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☼ oskcajga: Partial recovery: SSRI/SNRI withdrawal and adverse reaction

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oskcajga   
oskcajga

Hello,

 

Part 1, Intro.

I would like to start by sincerly thanking websites such as Survivingantidepressants for essentially helping me to understand my plight more accurately.  I have found the success story sections to be particularly helpful, and have turned to these wonderful stories to help raise my spirits in times of utter hopelesssness.  After lurking around on these websites, often too incapacitated to do much in the way of meaninful writing, I decided that it might be helpful to someone out there if I shared a little bit about myself.  This is going to be a long post, and I understand that some folks going through the ringer will not be able to read this post in its entirety due to eye issues, or just information processing issues.  I've been there, I couldn't read for probably a year in total.  Nevertheless, I hope that you can eventually read this and garner some useful information, or at least some knowledge that you are not alone out there going through this unjust, cruel, and totally unecessary hell that we've been subjected and in my opinion, decived into undertaking. 

 

 

 

2 Background. 

To give a brief background, in January of 2013 I was prescribed 50mg of pristiq, had a bad reaction to it, then switched to effexor 75mg for ~2 months, and then after requesting a medication that doesn't give me sexual dysfunction, prescribed 30mg of cymbalta.  All said, I spent about 6 months on medication and I must say that it definitely relieved my moderate depression and my above average anxiety.  Simultaneously, I was taking ~10-15 mg of adderall nearly daily for over 7 years to relieve "ADHD". 

 

Unfortunately, after going on cymbalta, I had a severe manic and borderline psycotic reaction to all of this stimulating medication, and proceeded to spend a tremendous amount of money over a short period of time because I became convinced that the economy was going to crash and that I needed to prepare NOW.  At the time, I had a sneaking suspicion that something was wrong, but I always trusted my brain's intuition, and my ideas just seemed "right".  So I basically bought 400 pounds of non-perishable food, and nearly 4 grand worth of prep supplies and equipment.  Seeing that I was employed as a graduate student, earning my PhD, my funding was very small, so this basically bankrupted me and I had to borrow money from my family just to stay out of debt.  I also opted for a very invasive, and not entirely necessary shoulder survery to correct a torn labrum that had been annoying me for years.  I went ahead and had the proceedur finished, and was excited at the prospect of having a fully functional shoulder again.  As it turns out, my intentions were pure, but life had other plans for me (if you'll read on and bear with me).

 

At the end of my 6 month stint on this medication, I started to have severe memory issues.  I would be trying to explain something to someone, and all of a sudden I would hit a "road block" and couldn't figure out the correct word to say.  Obviously, as a PhD student, this would not do, so I told my doctor I wanted off of this stuff and I wanted my old brain back.  Well, I tapered from 30mg to 10mg somewhat quickly (as I have now learned), over about 1 month and from there, based on my doctors advice, I "bit the bullet" as he said, and went from 10mg to 0mg.

 

What proceeded to happen was that I went through very similar symptoms over a 1 week period as people often describe for benzodiazapine withdrawal.  Indeed, I had been prescribed clonopin for 5 years, and withdrew from thsi medication back in 2012, and for 3 whole months I was basically bedridden and completely incapactated before being able to function in the world again.  At that time, I swore I would NEVER EVER take a benzo again for the rest of my life.  Unfortuantely, I was unaware of the fact that SSRI/SNRI's could produce similar symptoms.  I was even moreso unaware of the fact that SSRI's could produce symtpoms that were even worse and even more debilitating.

 

To make a long and disappointing story short, I went on an epic vacation just 30 days after I quit taking the medication.  I had planned this trip very meticulously during my medication induced mania, and spent a tremendous amount of money on this trip - it was essentially meant to be the trip of a lifetime.  Instead, it became one of the more awful experiences of my life.  Try navigating 5 countries and managing an expliciting budget just 30 days after coming off SNRIs and having awful symptoms.  It was just really hellish, but by the halway point I was hoping that my symptoms would abate within 60 days and I would be able to resume normal functioning at the unviersity.  I was hoping to put all of this behind me.

 

Upon returning, I discovered to my horror that I was not much improved after 2 months.  My symptoms included, but are not limited to:  severe memory loss, burning sensations, problems with my eyes (blurry vision, floaters, etc), difficulty concentrating, difficulty thinking, hot flashes, vertigo, and depersonalization/derealization, fatigue, etc.  You guys and gals know the deal, it was GRIM, GRIM, GRIM.  Looking back however, I actually had it pretty good.

 

 

 

 

3.  From bad to worse

This is where the story goes from bad to worse.  As a PhD student, I had worked exremely hard to make a good career for myself once I graduated.  One way of doing this way to teach a college level class.  So upon returning from my trip, I was meant to teach a laboratory class in an advanced course in Biological Sciences in the summer for 1 month.  I was so severely depersonalized/derealized, and with all the other symptoms I listed above, that I could barely remember any of my students names, and I certainly couldn't remember any of the subject matter that I was supposed to be an expert in and deticated the last 6 years of my life to memorizing.  Ouch.  Nevertheless, I pressed on because the course had to be taught.  So I did, and the student's didn't seem to mind, although I was acutely aware of the fact that I had lost a tremendous amount of intelectual ability and could no longer "speak off the cuff" and go on intelectual tangents.

 

I recall one student asking me about a relatively simple mathematical formula, and my inability to easily answer this question that drove me to the point of calling my ex-psyciatrist back and demanding a meeting.  In this meeting, he indicated that a quick fix for my problems would be a prescription of prozac which has a long half-life, and reinstating this medciation for about a month or two, and then going off of it again.  I thought "well, this better work" and went ahead and tried.  As I had mentioned earlier, I had shoulder surgery, and as a consequence I needed to take some pain meds to help me through the immensly painful physical therapy sessions.  So I was prescribed tramadol, which is an SNRI (UH OH!).  One day I will never forget, I took this tramadol, about 1 week after being on prozac, and I had an adverse reaction to this combination that has haunted me for about 1.5 years now.  My entire body went numb, particularly my sensory neurons, and I felt like an strange tickling and itching sensation over all of my skin.  

 

I never took tramadol again, but as I continued to take prozac over the next couple of weeks, I began to have an odd sensation over all of my skin:  it felt as if I had wet paper bags over my entire body, and my face was becoming anesthetized.  I returned to the doctor, and told him about this a couple of times and he basically told me "how could that possibly happen, you're probably just anxious".  At the 1 month mark, things were not improving, and all of the original cymbalta withdrawal symptoms were still there.  Instead of taking me off the medication, like any reasonable human being would have done, this doctor UPPED my dose to 20mg (from 10mg) after I told him about these adverse effects.  After just 2-3 days of this, I started having insomia, and I said "**** it" and tapered off quickly in a 4 day period.  It was around September 1st, 2013 when I had my last SSRI/SNRI.

 

I should note here that I was miraculously able to finish teaching the course in anatomy and physiology with decent reviews - the prozac did help in the sense that it produced a mild mania again, which allowed me to sort of interact with the students better.  What also helped me was the fact that it was around this time that I got together with my then girlfriend who saw me through the worst of the issues, so I was not completely alone thorugh this hell.  It was really this wonderfully patient and kind woman who, amongst others, I attribute to saving my degree and possibly my life. 

 

 

 

4.  Recovery begins

Afer coming to the realization that reinstatement was not an option for my body, I had to deal with the fact that my reinstatment attempt was not only a failure, but it made my symptoms like 40% worse.  Now I also had tingling and numbness in all of my limbs, profound sinous headaches, and trigeminal nerve problems, and more serious eye problems than before.  I was seeing a psyciatrist through all of this, because I was still taking adderall and had developed quite a habit for this pill (later on, I did successfully quit), which was the only way I was going to write my dissertation and complete my degree.  This doctor told me that many of these symptoms may disappear after 3 months, so I waited patiently and tried my best to be physcially active and write my dissertation.

 

Unfortunatley, releif came VERY slowly, and it wasn't until the 6 month point that I began to feel substantially better (Feburary-March 2014).  At this point, with the help of my wonderful girlfriend, and a moderate dose of adderall, I began to be able to write my dissertation, and in the next ~2 months I wrote a massive chunk of this work.  The symptoms sort of started to melt away, and I began to be able to read and function again - although I was still severely damaged and had not recovered.  In anticipation of the fact that this might take a very long time, I scheduled my PhD defense for Summer of 2014, so that I could be at my very best.  I also began applying for jobs, and succeeded in securing an interview. 

 

One unfortunate event that I should mention is that I reinjured my shoulder, so that now it was worse than it was before I got surgery in the first place.  I attribute my reinjury of the shoulder to the SSRI withdrawals, and the adderall - the level of fatigue and the lack of awareness of my body due to sensory nerve damage (or what ever the heck it is - I'm still not entirely sure I understand what precise physiological mechanism is responsible for all of the symptoms I experienced) caused me to just not work on my shoulder exercises like I should have, and to play with it the wrong ways while in bed one morning. 

 

 

 

 

 

5.  Hypersensitivity

This is a very important part of my story because it explains my great downfall and what happened next most precisely.  Basically, as I've read on this website, and others (particularly paxilprogress.com, which was my very favorite and brings me great disappointment to see it taken offline), many people experience an inexplicable hypersensitivity to various substances when going through an adverse reaction or an ssri withdrawal.  I too had this experience, most profoundly after my issues with prozac and tramadol.  For example, I would drink 1 beer and be totally incapacitated and brain dead for 3 days, and if I got drunk, I would be seriously messed up for no less than 14 days.  This was also true for niccotine, or any central nervous sytem agent - and it severely limited what I could do and how I could enjoy my life.  Thankfully, I was still able to escape my horrible existance by watching movies and playing videogames.  Indeed, videogames very effectively passed time for me in the early stages of withdrawal.

 

Anyways, I also noticed this in regards to other medication - I took one, ONE .5 mg clonopin pill to help releive the "rebound anxiety", if you can really call it that, during my recovery process in the spring of 2014, and it completely incapacitated me for like 2 weeks.  I then took a valarin root to try to see if that might help calm my nerves, and another 2 weeks of my life were gone.  It's very scary to realize that small doses of commonly taken medication can completely incapacitate oneself, and I seriously had no answer for any of this other than to very cautiously avoid any and all substances if it could be helped. 

 

I should have taken this as a warning for things to come, but unfortunately I did not.  One night, with my girlfirend, I had ingested a marijuana brownie in an attempt to have a good time and to escape from my unimaginable horror of losing my intellectual ability, my career, and everythign that was important to me (especially losing my emotions, the anhedonia was SEVERE and pathlogoically bad - instead of feeling emotions, I would just feel a vague burning sensation in the frontal part of my brain).  This pot brownie was suprisingly effective and I had a good night with her and her friends.  The only reason I mention this is because that pot browning made me believe that I could handle a small dose of marijuana without any ill effect - maybe I could find a way to medicinally deal with the agony of my condition. 

 

 

 

 

6.  True hell:

Boy was I wrong.  One night I shall never forget, my friend and college invited me to a party where people were smoking some pot  in a casual way.  I was just coming down from a daily dose of adderall, so I was a bit anxious and thought I would now have an opportunity to relax and enjoy myself with these folks and have a nice weekend.  I smoked the pot, and what happened next was that I went from euphoria stright to utter terror.  It's still very difficult for me to write this, and I'm having some emotional issues with articulating what happened, but I basically had a terror (panic) attack for like 12 straight hours, and proceeded not to sleep for the next 2 months.  Yes, you read that correctly, I did not sleep for 2 months.  The hell of SNRI withdrawals and an adverse reaction PALED in comparison to what I experienced when I smoked pot. 

 

ALL of the original symtpoms came back in full force, simultaneously.  I went from being partially recovered to fully incapacitated again, and this time I had the awful experience of constant panic attacks that could be set off from any little thing, and PROFOUND bodily anesthesia, in addition to profound derealization and depersonalization.  I had esentially lost all progress I had made over the previous 10 months, and became WORSE than I was before any of this started.  As I am still recovering from this experience, I can say with some confidence that what happened was that I overdosed on marijuana.  The weed in California is NOT the weed I remember back in NY - it's VERY strong and one can overdose on just a couple of hits.  I personally took 4 hits I think.  I know this is not a forum for drugs, but I must be explicit in my story and explian this because I do not EVER want ANYONE to go through what I went through.  Please, if you're on the fence about doing drugs to help edicinally allieviate your SSRI withdrawal symptoms, do not do it.  Please, I beg of you, with all of my heart, please do not risk it.

 

 

 

 

 

 

 

7.  Partial Recovery

I'm not going to go into all the fallout from my terrible mistake of overdosing on that pot, perhaps I will once it's all over.  I should just say that I just BARELY clung onto reality well enough to finish.  I thank God every day that I lived alone, and that I was in contact with a very understanding Aunt who had gone through similarly difficult situations.  She basically saved both my career and probably my life in the 6 months or so that I endured absolutel hell as a result of smoking that stuff.  At this time, I also started attending 12 step meetings of AA, and these kind and amazing people helped me out so very much.  I will forever be grateful to these wondeful people for their kindness during this time - these meetings esentially kept me out of the psych ward and off of medication.

 

I want to point out and focus on the positive:  I successfully completed my Phd in Biological sciences from a prestigous institution, and defended my PhD in front of the entire department and no one suspected a thing.  I also stayed with some friends after I lost the lease in my appartment due to graduation, and then found an appartment in the state of California nearby my old university that I was able to hang out in until I was well enough to make the drive across the country back to my father's house in Pensilvania.  I survived, barely.  Just barely.

 

*In the very unlikely, by theoretically possible chance that someone else in this wide world is experiencing something similar to that which I have just described, I would like to describe my timeline of recovery.  First 3 months, absolute hell - but by the end of the 3rd month, I was able to be somewhat peaceful and calm from time to time.  At the end of 6 months I was still having panic attacks from time to time,  but I was getting pretty good sleep 75% of the time time and I was able to enjoy myself sometimes.  At the end of 9 months is when the panic attacks stopped, and I just had bad migranes most of the time.  This is when I began to be able to read and write fairly well, and enjoy life even more from time to time.  I'm currently at 11 months, and still feeling pretty bad, but I'm much much better and get good sleep nearly every single night.

 

*If someone else is also trying to quit a stimulant while going through SSRI withdrawal hell like I did, I can outline my timeline for recovery if it might help you.  By the 3 month mark, I had all of my phiscal stamia back, and just lacked motivation.  By the 6-7 month mark, I have begun to recover intellectual motivation, but I'm still beset by migraine headaches most of the time.  I tapered from 10mg to 2.5mg and then off completely over a 6-7 week period. 

 

 

 

8.  Closing statements

Now, I'm currently on the mend.  I quit taking adderall immediately after completing my degree, and have been off that toxic and dangerous drug for about 7 months to date.  I am also 20 months free from SSRIS, and certainly will never go back that route again for the rest of my life.  I'm not employed, and really am not employable at all.  I will probably have to find a job at some point, but I'll most likely not be able to go back into academia until my brain fully recovers.  I don't know when that will be.  For now, I'm grateful to A) be alive, and B) be able to enjoy some things again.  I'm grateful for the fact that I have my health coming back, that I'm able to write somewhat articulately again, and that most of my symptoms are slowly improving.

 

I apologize for this massive essay - I know first hand how difficult it is to focus on things like this when you're going through withdrawal, but I just felt inspired this evening enough to write this post.  I hope that this helped someone in some way, and please let me know if you have any questions.  There is A LOT that I've left out from my story, especially in regards to the hell I experienced after smoking the marijuana.  I learned a tremendous amount about life that I really never wanted to learn, and I've learned a great deal about recovering from ssris, what works, and what doesn't. 

 

there's a lot that I don't really know yet, and I could use some advice from the community on a few things.  1) how the heck does one make money and support themselves through this?  I'm not entirely sure how to proceed from here.  I've attempted to figure out if there's another medical condition that I'm experiencing that is unrelated to ssri withdrawals - got an MRI (totally normal, from what the doctors at the ER said).  One doctor said it's possibly a neuropathy, or a metabolic disorder - but nothing concrete.  I'm scheduled to go see another doctor in an attempt to get an actual diagnosis so that I could possibly apply for disability, but I'm not too sure what to do.  I'm not so sure if going back to western medicine is a great idea, but I did get a lot of releif from knowing that there's nothing highly abnormal with my MRI, so I figure it might be good to rule out common disorders that can cause the symtpoms I'm still experiencing.

 

If there's one thing I've learned from all of this it's that the worst thing I can do to help myself is to introduce new chemicals in my body in order to fix the problem.  I've read countless recovery stories on this website and on paxilprogress, and I've been able to determine that if what I'm going through is SSRI withdrawal/adverse reaction, the only real cure for all of this is:  time.  From what I've read, it takes between 6 months and 5 years for people to recover completely.  That's a long time, and I'm not sure how to survive for that long.  I've just barely made it through 2 years.  Just BARELY.  I've thought about taking my life so many countless numbers of times over the past 2 years, but never did it - I don't think I will either.  I just think about it, because the pain is so severe and unending.  Although things have improved a LOT, and I mean A LOT from last may when I smoked that pot, I'm still far from recovered.  I have hope that I'll recover in the future, but I think this process will take a long time.  

 

Thank you for reading.

Edited by scallywag
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Hello oskcajga and welcome to SA.

 

Thank you very much for sharing your story. There are many things from your story which many of us can identify with. When I came to this site many things finally made sense to me in the same way you describe. Among other things, we are very familiar with extreme sensitivity to all kind of substances when in withdrawal, including food. I'm sure that your experience with marijuna will help people who are thinking of trying it out in an attempt to deal with suffering of withdrawal.

 

I'm very happy to read that you are recovering and have every confidence you will continue to do so. 

 

When it comes to your question about how to support oneself during recovery I believe our members from the States will be able to offer some advice. From reading their stories I noticed that it is possible to apply for a temporary disability (relatively easy). I'm amazed at how you were able to work, travel and finish your Phd thesis while going through all of that. You have endured an awful lot and have come out a stronger person appreciating simple joys that actually make life.

 

As you have probably noticed, we all have a short drug history in our signatures even people who are no longer taking anything like you. It simply helps everyone to know where we are coming from so to speak. So when you feel like it, it would be good to have yours. http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

We found only magnesium and omega 3 as something that helps recovery without causing hypersensitivity. If you haven't checked them yet, you might want to do it.

 

Once again, thank you for sharig your story and I look forward to reading of your continued progress.

 

Best,

Bubble

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Altostrata   
Altostrata

Welcome, oskcajga.

 

Congratulations on finishing your Ph.D in such difficult circumstances.

What is your current daily symptom pattern now?

As I was reading your first post, I was trying to assemble a timeline for your quitting your drugs, which you've partly addressed here:
 

*In the very unlikely, by theoretically possible chance that someone else in this wide world is experiencing something similar to that which I have just described, I would like to describe my timeline of recovery.  First 3 months, absolute hell - but by the end of the 3rd month, I was able to be somewhat peaceful and calm from time to time.  At the end of 6 months I was still having panic attacks from time to time,  but I was getting pretty good sleep 75% of the time time and I was able to enjoy myself sometimes.  At the end of 9 months is when the panic attacks stopped, and I just had bad migranes most of the time.  This is when I began to be able to read and write fairly well, and enjoy life even more from time to time.  I'm currently at 11 months, and still feeling pretty bad, but I'm much much better and get good sleep nearly every single night.
 
*If someone else is also trying to quit a stimulant while going through SSRI withdrawal hell like I did, I can outline my timeline for recovery if it might help you.  By the 3 month mark, I had all of my phiscal stamia back, and just lacked motivation.  By the 6-7 month mark, I have begun to recover intellectual motivation, but I'm still beset by migraine headaches most of the time.  I tapered from 10mg to 2.5mg and then off completely over a 6-7 week period.


Can you give a simple outline of the drugs you took, the dosages, how you came off, and the time to partial recovery from each?
 

As for making a living while impaired from withdrawal syndrome -- As you know, the U.S. is not much for providing safety nets. There are state and federal disability programs, but both have work history requirements. You will need to find a doctor to certify your disability. It is unlikely any metabolic or neurological tests will indicate a diagnosis. Most likely, you will get a psychiatric diagnosis.

 

Otherwise, people make do as they are able. It seems that, despite the withdrawal brain fog, many find they can focus on the computer. Perhaps you can get some kind of part-time job?

 

Given you've already recovered to some extent, you can expect continued slow progress as long as you take care of yourself and avoid high stress. Our Symptoms and Self-Care forum has suggestions to assist this process.

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oskcajga   
oskcajga

Here are my current symptoms, 11 months since smoking the pot and exacerbating my SSRI withdrawal/adverse reaction.  It's been 20 months since my last dose of prozac that I took to help alleviate the withdrawals from cymbalta (which I last took 23 months ago).

 

1.  anhedonia - Don't really feel any emotions at all, mostly just a vague tingling and burning and numb feeling in the frontal lobe section of my brain.  Someone could literally shoot my pet dog right in front of me, and I might not even move a little bit.  It's more of a pathological nerve damage sort of anhedonia than a depression anhedonia that one might experience in a very deep depression.  When I try to force myself to feel emotions, I just get a vague burning sensation and a feeling that there's just a bunch of cotton in my brain.

 

2.  Depersonalization/derealization - Still pretty severe, but I get occasional wiindows here and there - and reality is much easier to grasp now.  This took a long time to get better, and occurs so gradually that I can barely tell if I'm better from month to month.  This symptom was getting much better back before I smoked the marijuana, but after smoking it got like 3X worse than it ever had been before.  MANY of the symptoms that I'm experiencing can basically be categorized under the umbrella of DP/DR, and it makes me wonder if a certain fraction of all patients are just severely depersonalized.  For example, if one goes to a dpselfhelp.com forum and searches for tingling numbness, brain fog, parathesia, brain zaps, discoordination, etc, you find that many of these symptoms also occur in these people who have never taken and withdrew from an SSRI.  Not sure what that means, and I've tried to address the DP/DR by doing emotional exercises, etc, but nothing really seemed to make a difference.

 

3.  Trigeminal nerve problems, extreme eye pain, occasional eye spasms, light sensitivity, difficulty reading, tingling and burning all throughout my entire face, and clenching of the jaw.  I whittled away part of my lower teeth over the last 9 months of extreme grinding just from the pressure in my trigeminal nerve pulling my jaws together.  I also have visual snow, but this has gotten better with time and is now bearable (the marijuana made it absolutely scary, bright flashes of light everywhere with electrical lightning strikes of light occurring throughout the night).  I sometimes get involuntary twitching of my face, and this occurs simultaneously with a sharp soulwrenching pain in the back of my eyes.

 

4.  Tingling and numbness and burning in my limbs, and most parts of my body.  Before I smoked the marijuana this symptom had mostly gone away to a "sort of noticeable" state, but smoking the pot exacerbated this one the most and I couldn't feel my entire body - I couldn't feel clothes on my body, and felt 100% detached from my limbs.  For about 6 months I was in extreme danger of hurting myself if I were to, say try cutting carrots with a sharp knife and not being coordinated enough to prevent chopping off one of my fingers.  This symptom has gotten much better, but it's still quite bad.  This symptom also  flares up from time to time to the point where I still can't really feel my limbs as well as I could before.  But at least I know they're there now.  I've seen this symptom described before as parasthesia.

 

5.  Migraine like headaches.   I went to a hospital ER back in November and got diagnosed with "atypical migranes" after describing all of the symptoms to them that I'm describing here.  They gave me a medication called Imetrex, but I'm scared shitless of taking ANY medication whatsoever, even aspiring for a common cold, in fear that I'll have a hypersensitivity adverse reaction to it.  This symptom has gotten better and continues to improve, but its painfully slow.  It's tough to parse apart the migraines from the trigeminal nerve issues.

 

6.  Sexual dysfunction - numbness of the genitalia, and numbness feeling in my brain when I try to visualize anything.  It's like I got a lidocane shot into my nerves down there.  This and the anhedonia have simultaneously ruled out getting into a relationship of any kind.  I've actually had some dramatic improvements in this department in the last month, so healing is occurring.

 

7.  Memory issues, difficulty thinking, difficulty visualizing problems, difficulty using my imagination:  This is probably the single symptom that is preventing me from holding down any sort of competitive job.  It feels like I've been lobotomized, that's the best way I can describe it - as if the nerves inside of my frontal lobe and cerebral cortex have been infused with a constant dose of lidocane.  It feels as if my memories still exist, but I can't access them because my nerves are all numbed out.  When I try to remember an important life event, such as a memorable vacation I took with my mother in California, it burns like heck and feels horrible, though I can usually access the memory.               This is the symptom that basically destroyed my academic career, and combined with the anhedonia (because memory and emotion are intricately tied together), has made life a living hell for me.  I could deal with all the other symptoms, but this is the one that really pushed me over the top and has me wishing to die from time to time when it gets very bad.  Where's my imagination?  All the things that made me who I am?  I've sort of just settled into living like this at this point, but I have a faint hope that things will some day improve because I've read success stories where people go for like 4-6 years and then they're nearly fully recovered.

 

 

There seems to be a great deal of knowledge here on the forums, it would be helpful to see what sort of input you folks have on these symptoms.

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Altostrata   
Altostrata

See our topics in Symptoms and Self-Care about light sensitivity. You would be surprised how alleviating this, even slightly, can improve other symptoms.

 

What we recommend is working on symptoms one by one. Very small changes can assist the nervous system to heal itself.

 

(Brain zaps are associated with nothing but adverse effects of drugs.)

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westcoast   
westcoast

Good God. You are one of the extremers. Outsiders do not believe this can happen, but people here do, 100%

 

I am so glad to hear you completed the degree.

 

Welcome

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btdt   
btdt

I would say your ability to describe the symptoms have me in awe... as I was reading and nodding the best list I have ever seen I think.   I would put money on the bet there are a LOT of people who have all of this and that to me these are not the worst of the worst or the extreme as WC says sorry WC there are worse cases and showing improvement in the PSSD numbness so soon is a good sign too I bet... while my money is on the bet there are many like you ...not many with all these symptoms can verbalize them as well as you have thank you for that. 

 

Just because I still have it on here... take a look at this pict

https://www.google.ca/search?q=Dominique+Appia&tbm=isch&imgil=DB8nLQhh58HFkM%253A%253BCj9xAW8O6iv_GM%253Bhttp%25253A%25252F%25252Fwww.panicposters.com%25252Fdominique-appia-poster.html&source=iu&pf=m&fir=DB8nLQhh58HFkM%253A%252CCj9xAW8O6iv_GM%252C_&usg=__jbfG4ERP66Q8VK2nJ248a-YPd7Q%3D&biw=1093&bih=527&ved=0CJMBEMo3&ei=1cgxVbGJFYejyQSWkIDYBw#imgrc=gAFKP3Dl1_ZsLM%253A%3BxjDClScShjykiM%3Bhttps%253A%252F%252Fs-media-cache-ak0.pinimg.com%252Foriginals%252F79%252F73%252F84%252F79738444963af81db6c96d643c045096.jpg%3Bhttps%253A%252F%252Fwww.pinterest.com%252Fpin%252F82120393178420124%252F%3B1146%3B715

 

wow that may not work it is huge a girl disconnected looks like I feel 

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btdt   
btdt

I don't want to disagree with everyone on this page but some people have been hypersensitive to mag and fish oil too best thing to keep in mind is your body and your reactions may be different if it makes you worse stop doing it no matter what it is. 

 

There is a list of drugs here that people have had trouble with some are antibiotics stomach meds I had a reaction to a bp med and a muscle relaxant both this past year.. both set me back.  

 

Point being there are a lot of drugs we can react to after ssri/snri wd and the list is long and drugs varied... please be very careful with all drugs even if the doc says you need them.  Some antibiotics seem to be more apt to cause a reaction for people here so check if you can before you take one. 

 

It is not just the doctor either I have reacted to dental freezing and thinking it was the epinephrine started using one without it only to react in an even bigger longer lasting way to lidocaine... no i have not resolved this as of yet I avoid the dentist as best I can out of fear of another reaction.  I know too much about me again... I tend to do that. 

 

Money I sure wish I knew how to make some.. :) too... let me know if you dream up a plan so far there is no plan. 

 

Some how I missed this bit about the jaw pain maybe because I did not look I had a fractured jaw so blamed a lot on there now I have bone spur in my jaw to account for yep still pain.. thanks for the heads up on that I was not thinking it was wd or the headaches... 

 

Welcome hope you stay is a pleasant and short... shorter than expected at least. 

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LexAnger   
LexAnger

Welcome oskcajga!

 

I am very sorry for the extreme suffering the meds have put you through!

 

I can relate every one of the 7 categories you listed. I always have difficulties to describe my symptoms in a way makes sense to others. Now I cau Borrow 95% what you wrote for my own sets of years daily suffering! I also agree with you 100% on #7 which is a new symptom for me just started a weeks ago. All the others combined disabled me from doing most things but I can still do some work by flexible hours, working from home etc. but this one alone took away the last part of me that I used to feel still working and useful.

 

One thing still gives me hope is, my symptoms usually have a daily pattern with changing severity for each over various time frame, but all get better in evening. I consider it a proof that my brain is not permenantly damaged.

 

Is there any pattern for your symptoms, within a day and /or over time?

 

 

Lexanger

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oskcajga   
oskcajga

Thank you everyone for your well thought out and meaningful responses.

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oskcajga   
oskcajga

*topic moved from symtpoms/self care forum

 

Trigeminal neuralgia? Extreme eye pain, occasional blurred vision, involutnary twitching, can someone please comment?

 

Hello,

 

I have experienced the following trigeminal nerve symptoms for about 18 months or so, and it's only slowly getting better. 

 

--->>>Trigeminal nerve problems, extreme eye pain, occasional eye spasms, light sensitivity, difficulty reading, tingling and burning all throughout my entire face, and clenching of the jaw.  I whittled away part of my lower teeth over the last 9 months of extreme grinding just from the pressure in my trigeminal nerve pulling my jaws together.  I also have visual snow, but this has gotten better with time and is now bearable. 

 

I sometimes get involuntary twitching of my face, and this occurs simultaneously with a sharp soulwrenching pain in the back of my eyes.  Most of the involutary twitching occures at night as I'm falling asleep.  But I also twitch my facial muscles around when I'm talking to people because the pain hurts and I just compensate by adjusting things up there.  It's very embarrassing and painful.  If it werent for the searing pain in the back of my eyes and nose, I'd think this was tardive dykinesia.

 

--------------

 

 

I went to see a doctor, and she seemed to think that I had trigeminal neurlagia, and referred me to a neurologist, who I am scheduled to see on June 30th.  I just went to get some general blood work done to test for hormone deficiencies, metabolic panels, etc, so I'll let you folks know how these went.

 

Anyone have any idea what's going on with my trigeminal nerve?  The pain is just excruciating, and if I push my eyes too far, I will get an entire visual field spasm, where everything shakes like crazy, and then I get SEARING pain that is practically unbearable.  I hate this symptom, and actively close my eyes for minutes at a time to "rest" my eyes while typing.  As I type this right now, I'm closing my eyes because the pain gets very bad, and only closing the eyes and not focusing on something small like text on a computer helps it out a bit.  In previous months, I'd be bedridden for hours with all sorts of visual disturbances and light waves and searing pain for hours and hours. 

 

the strage thing about this issue is that not only does the pain affect my eyes nose, mouth etc, but I also have severe cognitive problems when the pain is severe.  For example, I can barely hear myself think, and I cannot really remember things well.  I have no idea how a trigeminal nerve problem can affect congnitive functions, unless it's some sort of inflamation that gets into my frontal lobe region.  Perhaps its a migrane situation, folks with migranesreport experiencing side effects like cognitive dysfunction??

 

If it's a migrane, has anyone here tried taking any medication?  I',m scared to take something like Imetrex because the medication works by manipulating serotonin pathways, and I fear that my serotonin pathways are all messed up already and it might make me go crazy and have even worse symptoms.  I am afraid to take aspirin, because I don't know how my body will react.  Maybe start at a microscopic dose and work up?

 

Any input would be greatly appreciated.

 

Thanks.

Edited by Petunia
added note and topic title

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Fresh   
Fresh

Around August of 2000I developed intense tooth pain first in one tooth , then in several.    I went to dentists , and they all

told me I had no cavities or problems.  I was given two , yes 2 , root canal treatments , but the pain continued and moved around.

 

Finally one night in January I had taken so much codeine I was worried  I may be toxic. The pain was intense and had seized up

my jaw and crept up my face and into my eye socket. I rang a doctor friend who took me to hospital , where I was diagnosed with

trigeminal neuralgia.    I was put on tegretol and had a severe skin allergic response (urticaria).  I was changed to Neurontin , the

new wonder drug at that time.  It kept the pain mostly at bay over the next 18 months.

 

Fast forward 18 months and I was at the dentist having a wisdom tooth pulled.  It was stuck - just not coming out.  When the dentist

finally hacked it out , it had a huge hook at the end of the root.   The angle of the ex-ray hadn't shown the hook (grrr) and the wound

was  a real mess.

 

From that day on the trigeminal neuraglia stopped.   It was the hook-root that had been aggravating the trigeminal nerve , and had

been worse when I chewed more all that time.

 

I'm not sure exactly what you'll take from this , but TN is excruciating at times- I totally understand.  

Other members have used mouth guards for teeth grinding (bruxism).

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Petunia   
Petunia
 pain,  spasms, light sensitivity, difficulty reading, tingling and burning , clenching of the jaw.  teeth  grinding. visual snow,

 

 involuntary twitching

 

visual disturbances

severe cognitive problems  migrane

 

All of these symptoms have been reported by people suffering withdrawal from various psych drugs, including antidepressants, so it may just be withdrawal.  But its good you are seeing a neurologist to get it checked out. Please let us know what you find out.

 

You have had some improvement, so that's a good thing.

 

I've had extreme sensitivity to drugs in withdrawal, but have been able to take 1 - 2 aspirin for pain without it causing any issues.  Usually 1 is enough to take the edge off any pain for a few hours, perhaps try a half and see how you react.

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Faithbarelysurviving   
Faithbarelysurviving

I have similar pains, excruciating. I am bed ridden. Allover the face teeth jaws, tongue burning and also stabbing like pain in the head that almost make me faint, pain in gums and also rigid rigid neck. It also happens i have sensitivity to light, used to have eye twiches, nose pain that goes straight into my head, so bad i wil vomit... And yes cognition, mental function is almost lost, like i am in a black daze, fog.... With me i think it started very bad after CT some antidepresant in the past or came off of it very fast, i was probably given something else, but when my dr took me off 15 mg valium in about 2 mths or less, that is when it triggered it and gave me tegretol, and I was already taking neurontin. What i used to do was to take a warm bath and put my head inside, now i am also battling other issues besides this, maybe because of other drugs i take..... but i know exactly what you are talking about. I wish i could help more...

Faith

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oskcajga   
oskcajga

I have similar pains, excruciating. I am bed ridden. Allover the face teeth jaws, tongue burning and also stabbing like pain in the head that almost make me faint, pain in gums and also rigid rigid neck. It also happens i have sensitivity to light, used to have eye twiches, nose pain that goes straight into my head, so bad i wil vomit... And yes cognition, mental function is almost lost, like i am in a black daze, fog.... With me i think it started very bad after CT some antidepresant in the past or came off of it very fast, i was probably given something else, but when my dr took me off 15 mg valium in about 2 mths or less, that is when it triggered it and gave me tegretol, and I was already taking neurontin. What i used to do was to take a warm bath and put my head inside, now i am also battling other issues besides this, maybe because of other drugs i take..... but i know exactly what you are talking about. I wish i could help more...

Faith

 

Oh my goodness, your case sounds absolutely much worse than myself.  I've never at any point of this thing been totally bedridden, always able to walk around and do exercise to some extent.  Mostly limited to difficulty working, thinking, interacting with people, but most people don't notice it (although I have facial twitches). 

 

Have you been to a neurologist to get it diagnosed or at least rule out MS or something more serious than trigeminal neurlagia? 

 

How do you support yourself, family, friends, or just money in the bank?

 

Have you seen any improvements over the years?  I've personally experienced rather dramatic improvements over the past year, to the point that sometimes I don't really notice it anymore.  I expect these improvements to continue as long as I don't do anything to exacerbate it, and I cotninue to eat very well, and exercise daily or once every other day.

 

I'm so sorry for your pain, I totally understand what you're going through.

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Bellisimo   
Bellisimo

Hey there

 

iam so sorry for you suffering. I had much problems with all these kind of stuff you mention for a very long time, still today i get some of them but very MILD. The burning sensations and musclespasms, tingling in my entire face etc was a big problem for me.. i was so scared, thought i had ms, parkinsson, als what so ever, even borrelia.. but all tests came back fine. Now 22 months free im much better , the burning sensations suddenly stopped and havent felt them for a while now, the tinglings in my face is gone aswell, still sometimes i get ticks like spasms. but they are much better aswell..

I had jawpain, eyepain alot aswell ..

I think its good u will go to doc and let them look at you and take tests but ive been there , i know many ppl been there and i got better and i know other ppl got better.

 

Hang in there

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Lovofsun   
Lovofsun

I have the same sort of thing going on at the moment... i get pain in the back of my head and ears the most but i do get facial pain and eye pain.

I have been told i might have TMJ....  maybe this could be a factor in people?  Does anyone else grind there teeth of clench there jaw a lot?

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oskcajga   
oskcajga

I have the same sort of thing going on at the moment... i get pain in the back of my head and ears the most but i do get facial pain and eye pain.

 

I have been told i might have TMJ....  maybe this could be a factor in people?  Does anyone else grind there teeth of clench there jaw a lot?

 

 

Yeah, I have that too.  Lots of jaw clenching, mostly because of the pain, its sort of a reflex to lessen the pain in the trigeminal nerve.  I don't know about TMJ.  Seems to be nerve damage in my case, but its slowly slowly slowly improving.

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oskcajga   
oskcajga

I just got a bunch of test results back, and they're all basically completely normal.  Figured I'd share, no one will probably care but here they are:

 

 

My value is on left and then to the right is the normal range.

 

THYROID STIMULATING HORMONE   0.948                        0.340-5.60 uIU/mL

 

TESTOSTERONE   537.6                   180.0-780. ng/dL

 

GLUCOSE   95                      70-100 mg/dL

BLOOD UREA NITROGEN   17                     7-25 mg/dL

CREATININE   1.14                    0.70-1.30 mg/dL

SODIUM   133                136-145 mmol/L

POTASSIUM   4.2                     3.5-5.1 mmol/L

CHLORIDE   102                      100-108 mmol/L

VENOUS TOTAL CO2   30                   21-31 mmol/L

ANION GAP   1                4-18

CALCIUM   9.5               8.6-10.2 mg/dL

TOTAL PROTEIN   7.2                    6.4-8.9 g/dL

GFR   81    

ALBUMIN   4.7                       3.5-5.7 g/dL

ALKALINE PHOSPHATASE   63                    34-104 IU/L

TOTAL BILIRUBIN   1.10                         0.20-1.10 mg/dL

ALT (SGPT)   35                          7-52 IU/L

AST (SGOT)   30               13-39 IU/L

 

 

CHOLESTEROL   132                0-199 mg/dL

TRIGLYCERIDES   42                0 -149 mg/dL

HDL   39                   40-60 mg/dL

LDL   85                 0-100 mg/dL

NON HDL CHOLESTEROL   94                  0-129 mg/dL

TOTAL CHOLESTEROL TO HDL RATIO   3.4                  4.0-6.7

 

 

So I guess that rules out any kidney, liver, or hormonal imbalance that can explain my current state of dysfunction.  In the past I got a bunch of other hormones tested, and they all came back normal too, so I guess its just brain damage.

 

Kind of glad my testosterone is normal, not really glad that I'm totally disabled and can't work or make money whatsoever.  Guess that's life.

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Fresh   
Fresh

It's good news that your bloods are normal oskajga.

There's no reason to believe that the state of your brain is permanent.  It's likely that your healing will continue for

years to come.

Have you tried a mouthguard for bruxism?

 

Fresh

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btdt   
btdt

first time I seen this one

ANION GAP   1                4-18

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btdt   
btdt

I just got a bunch of test results back, and they're all basically completely normal.  Figured I'd share, no one will probably care but here they are:

 

 

My value is on left and then to the right is the normal range.

 

THYROID STIMULATING HORMONE   0.948                        0.340-5.60 uIU/mL

 

TESTOSTERONE   537.6                   180.0-780. ng/dL

 

GLUCOSE   95                      70-100 mg/dL

BLOOD UREA NITROGEN   17                     7-25 mg/dL

CREATININE   1.14                    0.70-1.30 mg/dL

SODIUM   133                136-145 mmol/L

POTASSIUM   4.2                     3.5-5.1 mmol/L

CHLORIDE   102                      100-108 mmol/L

VENOUS TOTAL CO2   30                   21-31 mmol/L

ANION GAP   1                4-18

CALCIUM   9.5               8.6-10.2 mg/dL

TOTAL PROTEIN   7.2                    6.4-8.9 g/dL

GFR   81    

ALBUMIN   4.7                       3.5-5.7 g/dL

ALKALINE PHOSPHATASE   63                    34-104 IU/L

TOTAL BILIRUBIN   1.10                         0.20-1.10 mg/dL

ALT (SGPT)   35                          7-52 IU/L

AST (SGOT)   30               13-39 IU/L

 

 

CHOLESTEROL   132                0-199 mg/dL

TRIGLYCERIDES   42                0 -149 mg/dL

HDL   39                   40-60 mg/dL

LDL   85                 0-100 mg/dL

NON HDL CHOLESTEROL   94                  0-129 mg/dL

TOTAL CHOLESTEROL TO HDL RATIO   3.4                  4.0-6.7

 

 

So I guess that rules out any kidney, liver, or hormonal imbalance that can explain my current state of dysfunction.  In the past I got a bunch of other hormones tested, and they all came back normal too, so I guess its just brain damage.

 

Kind of glad my testosterone is normal, not really glad that I'm totally disabled and can't work or make money whatsoever.  Guess that's life.

I have not seen this test before I took a look 

http://www.medfriendly.com/anion-gap.html

 

first time I seen this one

ANION GAP   1                4-18

I am not sure I have this straight as who knows with tests I am often making a mistake but if your result wa 1 and the reference was 4-18 is that not a problem. For all I know the 1 is part of the name of the test... :)

 

Bit more if you interested 

"The anion gap is the difference between primary measured cations (sodium Na+and potassium K+) and the primary measured anions (chloride Cl- and bicarbonate HCO3-) in serum. This test is most commonly performed in patients who present with altered mental status, unknown exposures, acute renal failure, and acute illnesses.[1] See the Anion Gap calculator.

The reference range of the anion gap is 3-11 mEq/L

The normal value for the serum anion gap is 8-16 mEq/L. However, there are always unmeasurable anions, so an anion gap of less than 11 mEq/L using any of the equations listed in Description is considered normal.

For the urine anion gap, the most prominently unmeasured anion is ammonia. Healthy subjects typically have a gap of 0 to slightly normal (< 10 mEq/L). A urine anion gap of more than 20 mEq/L is seen in metabolic acidosis when the kidneys are unable to excrete ammonia (such as in renal tubular acidosis). If the urine anion gap is zero or negative but the serum AG is positive, the source is most likely gastrointestinal (diarrhea or vomiting).[2]

http://emedicine.medscape.com/article/2087291-overview

 

If it wasn't flagged it is likely fine. 

Small things befuddle me some days I have had a million tests and I have not noticed this one on any of the results so I was curious. 

 

So how are you doing now?  I hope things are tolerable and your finding some things to help you feel better...my best advice is always deep relaxation from my experience this helps me a lot. 

I wish you peace

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oskcajga   
oskcajga

 

I just got a bunch of test results back, and they're all basically completely normal.  Figured I'd share, no one will probably care but here they are:

 

 

My value is on left and then to the right is the normal range.

 

THYROID STIMULATING HORMONE   0.948                        0.340-5.60 uIU/mL

 

TESTOSTERONE   537.6                   180.0-780. ng/dL

 

GLUCOSE   95                      70-100 mg/dL

BLOOD UREA NITROGEN   17                     7-25 mg/dL

CREATININE   1.14                    0.70-1.30 mg/dL

SODIUM   133                136-145 mmol/L

POTASSIUM   4.2                     3.5-5.1 mmol/L

CHLORIDE   102                      100-108 mmol/L

VENOUS TOTAL CO2   30                   21-31 mmol/L

ANION GAP   1                4-18

CALCIUM   9.5               8.6-10.2 mg/dL

TOTAL PROTEIN   7.2                    6.4-8.9 g/dL

GFR   81    

ALBUMIN   4.7                       3.5-5.7 g/dL

ALKALINE PHOSPHATASE   63                    34-104 IU/L

TOTAL BILIRUBIN   1.10                         0.20-1.10 mg/dL

ALT (SGPT)   35                          7-52 IU/L

AST (SGOT)   30               13-39 IU/L

 

 

CHOLESTEROL   132                0-199 mg/dL

TRIGLYCERIDES   42                0 -149 mg/dL

HDL   39                   40-60 mg/dL

LDL   85                 0-100 mg/dL

NON HDL CHOLESTEROL   94                  0-129 mg/dL

TOTAL CHOLESTEROL TO HDL RATIO   3.4                  4.0-6.7

 

 

So I guess that rules out any kidney, liver, or hormonal imbalance that can explain my current state of dysfunction.  In the past I got a bunch of other hormones tested, and they all came back normal too, so I guess its just brain damage.

 

Kind of glad my testosterone is normal, not really glad that I'm totally disabled and can't work or make money whatsoever.  Guess that's life.

I have not seen this test before I took a look 

http://www.medfriendly.com/anion-gap.html

 

first time I seen this one

ANION GAP   1                4-18

I am not sure I have this straight as who knows with tests I am often making a mistake but if your result wa 1 and the reference was 4-18 is that not a problem. For all I know the 1 is part of the name of the test... :)

 

Bit more if you interested 

"The anion gap is the difference between primary measured cations (sodium Na+and potassium K+) and the primary measured anions (chloride Cl- and bicarbonate HCO3-) in serum. This test is most commonly performed in patients who present with altered mental status, unknown exposures, acute renal failure, and acute illnesses.[1] See the Anion Gap calculator.

The reference range of the anion gap is 3-11 mEq/L

The normal value for the serum anion gap is 8-16 mEq/L. However, there are always unmeasurable anions, so an anion gap of less than 11 mEq/L using any of the equations listed in Description is considered normal.

For the urine anion gap, the most prominently unmeasured anion is ammonia. Healthy subjects typically have a gap of 0 to slightly normal (< 10 mEq/L). A urine anion gap of more than 20 mEq/L is seen in metabolic acidosis when the kidneys are unable to excrete ammonia (such as in renal tubular acidosis). If the urine anion gap is zero or negative but the serum AG is positive, the source is most likely gastrointestinal (diarrhea or vomiting).[2]

http://emedicine.medscape.com/article/2087291-overview

 

If it wasn't flagged it is likely fine. 

Small things befuddle me some days I have had a million tests and I have not noticed this one on any of the results so I was curious. 

 

So how are you doing now?  I hope things are tolerable and your finding some things to help you feel better...my best advice is always deep relaxation from my experience this helps me a lot. 

I wish you peace

 

 

 

According to online research that I did, a normal anion gap is between 0 and 10, indicating that my levels are normal.  Not sure why the reference values were different for the lab that had me tested.

 

Too bad they can't do a blood test for seritonin, norepinephrine, dopamine, gaba, etc etc for all of the various brain regions.  I bet they would be totally out of whack and not normal. 

 

Thanks big pharma for creating a chemical imbalance in my brain, I appreciate it.

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westcoast   
westcoast

It looks like started during your Adderall taper. Is that right?

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oskcajga   
oskcajga

It got worse during adderall withdrawals, but started long before then.  It started way back when I had an adverse reaction to prozac when I tried to remediate my cymbalta withdrawal symptoms, and was then SEVERELY exacerbated when I smoked too much pot, and then again when I came off of adderall.  Ever since then it's just been very slowly improving over time.  It's the one symptom that is making it very difficult to enjoy being alive.  I could more or less cope with all the other issues.

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oskcajga   
oskcajga

This might be a little bit TMI, but I figured I'd update my situation a bit:

 

for the last 2 nights in a row I've had almost functional orgasms.  Probably like 50-75% of normal, but that's a VAST improvement from my state for many months where I couldn't even feel pleasure at all, and it felt like my genetila was a numbed out piece of meat that I was handling.

 

I can't even tell you how long it's been since I've felt like this.  Ever since smoking that pot about 13 months ago, the sexual dysfunction got like 2X worse than it was during withdrawals....and so now I'm seeing a window in that symptom.

 

So I guess for those of you with pssd, there is hope.

 

Oddly enough, it seems like the pleasure is all in my brain (that makes sense I suppose if you realize thats where all the pleasure centers are in the body, and the genetilia just act as a trigger for those centers).  It's as if one of my brain regions is no longer anesthetized and can process the pleasure in a somewhat normal way.

 

If this can happen, I'm certain that I can heal almost completely.  Just a matter of being patient and taking care of myself.

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btdt   
btdt

I am glad this has given you some hope. There is something called C fibers Dr Healy was talking about it tho he did not say much I posted it on here some place I don't recall which thread maybe the pssd one but they are studying them now and maybe there will be a break thru for pssd some day. In case you not cured by some day 

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oskcajga   
oskcajga

I am glad this has given you some hope. There is something called C fibers Dr Healy was talking about it tho he did not say much I posted it on here some place I don't recall which thread maybe the pssd one but they are studying them now and maybe there will be a break thru for pssd some day. In case you not cured by some day 

 

 

Yeah those C fibers are probably the ones that get damaged from SSRI use - doubt there's going to be anything that research can do for it.  If you look at diabetic neuropathy, there's no cure, just a bunch of medications people can take that might help with the pain but give them terrible side effects.  Sound familiar?

 

I'm beginning to think more and more that staying away from western medicine is the best medicine.

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btdt   
btdt

 

I am glad this has given you some hope. There is something called C fibers Dr Healy was talking about it tho he did not say much I posted it on here some place I don't recall which thread maybe the pssd one but they are studying them now and maybe there will be a break thru for pssd some day. In case you not cured by some day 

 

 

Yeah those C fibers are probably the ones that get damaged from SSRI use - doubt there's going to be anything that research can do for it.  If you look at diabetic neuropathy, there's no cure, just a bunch of medications people can take that might help with the pain but give them terrible side effects.  Sound familiar?

 

I'm beginning to think more and more that staying away from western medicine is the best medicine.

 

I find it odd I can't find any information on C fibers like there is an information boycott on them or something I know they are supposedly "new" or newly discovered but there is not even a wiki page on their discovery nadda...

 

I wonder if diabetics have sexual dysfunction too if what you say is right then they would have to have it too and I do not know that they do.

Sexual and urologic complications of diabetes occur because of the damage diabetes can cause to blood vessels and nerves. Men may have difficulty with erections or ejaculation. Women may have problems with sexual response and vaginal lubrication. "

 

Well answered that but some of the problems are not the same... some are.  Not the same as me at least. 

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westcoast   
westcoast

Osk, I saw your posts in the cursing thread. Are you still feeling that badly? I noticed that your grim condition fell to the wayside because of a graver issue.

 

I wish I could compare my dna to yours. Effexor and it's cousins pristiq and cymbalta, and adhd meds were my ruin, too.

 

About non-western stuff, the other day I searched for akathisia ayurveda and found a lovely rant on indiadivine.org that was triggered an akathisia article elsewhere.

http://www.indiadivine.org/content/topic/1780371-akathisia-an-insane-side-effect-of-sanity-treatment/

(NB the reference to Haskovec in 1902 brings up another discussion; he might have been describing a kind of encephalitis and akathisia as we know it might never have existed before now. To be taken up in off-topic.)

 

I did not think I would ever recover from it or get over what I lost, which is massive. Probably true. But nonetheless I am finally enjoying things again. I can look back, and I do. I look forward, and it's not the view I had before all this. But I don't often do that. That's what's better. I just got a call and have to log off, but please stick around. The site, and the surface of the earth.

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oskcajga   
oskcajga

Osk, I saw your posts in the cursing thread. Are you still feeling that badly? I noticed that your grim condition fell to the wayside because of a graver issue.

 

I wish I could compare my dna to yours. Effexor and it's cousins pristiq and cymbalta, and adhd meds were my ruin, too.

 

About non-western stuff, the other day I searched for akathisia ayurveda and found a lovely rant on indiadivine.org that was triggered an akathisia article elsewhere.

http://www.indiadivine.org/content/topic/1780371-akathisia-an-insane-side-effect-of-sanity-treatment/

(NB the reference to Haskovec in 1902 brings up another discussion; he might have been describing a kind of encephalitis and akathisia as we know it might never have existed before now. To be taken up in off-topic.)

 

I did not think I would ever recover from it or get over what I lost, which is massive. Probably true. But nonetheless I am finally enjoying things again. I can look back, and I do. I look forward, and it's not the view I had before all this. But I don't often do that. That's what's better. I just got a call and have to log off, but please stick around. The site, and the surface of the earth.

 

I'm sorry to hear that you too have gone through something similar to what I'm experiencing.  I just feel a strong sense of anger towards many different entities that are more or less responsible for this outcome.  I feel compassion for fellow sufferers, but its such a dubious and uncertain recovery process that it makes it difficult to feel too much hope when you realize some people don't fully recover at all, others take 5 years, 7 years, etc.

 

-

I'm doing OK I suppose.  I might be partially recovered, but that means that I've improved from like 5% of normal to like 25 or 30% of normal.  I used to be so completely brain damaged that I couldn't sit still and enjoy anything whatsoever.  Every single day was a living hell and I just endured it because I had some faint hope that life might get better.  Fast forward 2 absolutely horrible years of my life, and I'm just not that much better than I was, and so the slow progression of things, coupled with the really frustrating life situation I'm in, makes me think of dying almost every single day. 

 

I mean, I'm running out of cash, have no job, can't hold a job, can barely drive, can barely eat and exercise, can barely talk to people - and my parents are just marginally interested in helping me, or can't help me.  Sure, I'm not totally psycotic, and I'm not having daily panic attacks, and I can actually read the computer and write and express myself - I can feel my legs, and I can eat, and I can sleep like 5-12 hours a day (usually 8+) and I can talk to people and pass for normal, so in that sense I'm partially recovered, -------but all the things that made life worth living at my baseline state have been virtually erased.  Emotions, what are those?  Passsion?  Love?  Hate?  Motivation?  Creativity?   Relationships?  Eating food and enjoying it?  Spirituality?

 

  I don't forsee myself ever hurting myself or ending my life, because things aren't THAT bad yet, but I fantasize about it every day.  Usually after I wake up and realize that things are "still like this".  My dreams have been fairly normal, and I forget that my life has been turned upside down when I sleep.  I'm SO LUCKY that I get like 5-12 hours asleep, usually 8 or more.  This period of time is my respite.  As soon as I wkae up, I still usually get brain zaps, little ones that come in rapid succession (like zap zap zap zap zap zap zap zap, sometimes can go for minute or longer).  This is still happening 2 years later.  Usually these brain zaps are like some sort of strange auditory hallucination coupled with a small brain jitter.  I interpret them as my brain trying to heal itself, but who really knows.  Again, I doubt I'd every do it - if I was going to do it, I'd have done it back when my life was a living hell - not now that I'm partialy recovered and can see monthly improvements.

 

I thought I'd be able to work a simple job by now, but my unreliable nervous system makes that chance pretty dubious.

 

Thank god for websites like this, there's really not many other people on this planet that seem to have the time to give a crap about people like me and you who have been so utterly destroyed by these medications.  I just wish the damage didn't take SO long to heal.

 

--

Having admitted that I idealize about suicide frequently, I should also mention that I'm improving a great deal in my view of this situation.  I'm sort of of the opinion now that this is my life and as horrendous and difficult as it is, its the only life I get on this planet.  Pain and suffering are paths to spiritual growth.  A the very least, pain and suffering will offer contrast for the beter times ahead.  I've sort of adopted this new idea that I'm actually enjoying the misery and the pain.  I'm not quite at the point where I'm grateful for it and welcome it, but I'm getting there.  I shouldn't resist it so much. 

 

I try acceptance, and have gotten a great deal of improvement in that department over the last couple months.  I think that suicidal idealization when the pain is extremely intense is a natural reaction that is very human.  These sorts of expressions should be encouraged, and I sort of wish there was a thread on this website for such thoughts and musings.

 

As spring has arrived, I've begun to help my parents out in the yard.  I've been able to work outside and do quite a bit of work.  I dug up an entire garden for my dad and transported like 20 wheelbarrow fulls of soil across his 1 acre plot.  I've been outside and hiked for several hours until my body was completely exhausted, seeking good places to fish up in the mountains.  I helped my mother water her plants, fixed her deck with screws, and helped clean the gutters of a 3 story house.  I've driven back and forth between PA and NY 2X in the past month, and will be driving to visit my friend in Ithaca again very soon.  When I'm back at home, I go fishing almost every day, and always get some sort of exercise for at least 5 times a week. 

 

So I'm out in the world, and I can do some basic things, and I'm trying to get myself back into this world.  Trying to appreciate the pain and suffering of life, and try to express my hopeless feelings during difficult life situations online on this website, or to an understanding friend (not too many people are understanding or even HIGHLY apprehensive of suicidal thoughts).  I'm not one of those people.

 

I tend to view society as a broken and doomed system of unsustainable consumption and waste.  There's a great deal of pain and suffering that occurs throughout the globe, and I'm just one of the many billions of people who struggle every single day.  There are over 7 billion people on this planet, and we're outstripping the natural resources that keep us alive in an exponential fashion.  Moreover, the financial systems in this world are highly overstressed, more debt has accumulated than any other time in hsitory.  Difficult and crazy times are ahead.  My pain and suffering are so insignificant compared to the grand scheme of the universe, that it seems senseless to end my life on my own.  There are obviously much bigger things happening out there that will probably do it for me.  I might as well stick around and try to enjoy my highly unlikely existence on this planet in the first place, and the first class lifestyle that I've been born into as a citizen of the US (I could have been born as a scum diver in Mumbai, and die at the age of 28 from a septic infection as a result of swalling too much scum).

 

So that's my musings for today, thank you for taking interest in me, I'm grateful.

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westcoast   
westcoast

Thanks. I am no Polly-anna, by the way. (Also, I meant its, not it's.)

 

There is a huge difference between wishing you were dead and wanting to kill yourself. If I wanted to kill myself I would, just like wanting a cup of coffee. What I wanted during the worse phases of WD, as in all two years of it, was to be unconscious. I could not sleep without chemicals. Yet a prescription drug was out of the question. So I pieced it together with OTC and plant-based things including C2H6O and C21H30O2. (Never knew they had the same elements. (Good work, mother nature.) Non-sleep is special hell of WD misery.

 

Nothing's more maddening than a glib expert saying what I went through was a relapse of depression. I wasn't on the drug for depression, anyway. It wasn't just depression x 100, it was something out of this world that I can't believe would be created in a body without some foul poison designed for the task. (Good work, science.)

 

My foray into ayurveda led nowhere, as I expected. Akathisia was not around until recently. Maybe researchers in ayurvedic medicine will find it interesting. Maybe I should search harder--in Hindi.

 

Anyway, nice to hear your better than when you typed the excellent post in the Cursing Thread.

 

wc

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LexAnger   
LexAnger

Hi OSK,

 

It mad me very sad to read your last post although I appreciate your great insight and deep thoughts about how you evolved during this incredible hurt and journey! I too went through the mindset change painfully one step after another until almost complete acceptance of the situation.after couple years struggle! I believe its the first milestone in the right path for healing and self care. I'm happy for you that you are seeing some improvement even it's painfully slow.

 

Your brain is still super sharp as shown by your writing! It shows your brain is not permenantly damaged just sometime or most times in certain areas it was suppressed. I believe each story here is heart broken, such as mine a victim for a bad headache and two weeks lexapro samples! They actually gave away this poison like candy!

 

What I do regularly is to read the successful stories compiled here at SA to enhance my sense of hope and strength to continue. You are still young and I saw many cases of young ppl with faster healing. I believe you will be another successful story in future and looking forward to the day will be good for healing as well.

 

Wish you faster healing!

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oskcajga   
oskcajga

Hi OSK,

 

It mad me very sad to read your last post although I appreciate your great insight and deep thoughts about how you evolved during this incredible hurt and journey! I too went through the mindset change painfully one step after another until almost complete acceptance of the situation.after couple years struggle! I believe its the first milestone in the right path for healing and self care. I'm happy for you that you are seeing some improvement even it's painfully slow.

 

Your brain is still super sharp as shown by your writing! It shows your brain is not permenantly damaged just sometime or most times in certain areas it was suppressed. I believe each story here is heart broken, such as mine a victim for a bad headache and two weeks lexapro samples! They actually gave away this poison like candy!

 

What I do regularly is to read the successful stories compiled here at SA to enhance my sense of hope and strength to continue. You are still young and I saw many cases of young ppl with faster healing. I believe you will be another successful story in future and looking forward to the day will be good for healing as well.

 

Wish you faster healing!

 

Thank you for your post.  It means so much to me that you took the time to read my little statement.  I'm sure that you have a lot of important things to do in your day, so the fact that you spend 10 minutes or whatever, reading my post means a great deal to me.  Thank you for letting me know that you think I'm sharp. 

 

 Some of these symptoms feel like I have permanent or semi permanent nerve damage.  I feel like some diabetics probably feel after having a blood glucose level of 500 for years at a time.  

 

I hope my young age will be a factor in my recovery.  I also hope that my active and healthy lifestyle will also contribute.

 

How many years out are you?  You're obviously better off than myself if you can feel the emotion "sad", I can't feel much of anything other than a headache and a vague burning sensation in my brain.  I yearn for the days when I can feel emotions again, and I feel like it's going to be a very difficult process getting used to them all and processing everything that has happened.  It's going to be like being 5 years old again and feeling emotions for the first time.

 

The recovery stories are the bread and butter of this and other websites.  I too have read and reread them a million times.  Unfortunately, for one reason or another, there are far fewer recovery stories as there are complaint and misery stories.  Obviously many other recovery stories are out there, it's just that people tend to move on with their lives and not post the details online.

 

thanks again.

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oskcajga   
oskcajga

Update:

 

Spilled a bunch of gasoline all over my arm and then inhaled a bunch of gasoline as well.  Thought I'd have a terrible adverse reaction, but I just felt sort of out of it for an hour or so, now feeling much much better.  A year ago this sort of thing would have created a MASSIVE panic attack and I'd be totally incapacitated for a couple of days, at least.

 

Sign of improvement.

 

Oddly, all these "exposures" to chemicals, or other things usually result in my trigeminal nerve to get all out of whack, causing confusion, depersonalization, difficulty concentrating, etc.  The symptoms are almost always the same, regardless of what I was exposed to.

 

I'm sure I'll be fully recovered within a day, nothing tragic to report, thankfully.

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LexAnger   
LexAnger

I believe I was the first reader of your initial introduction as I noted it was immediately after you posted. I was very impressed thinking wow, you did it like a thesis :) I actually shared your initial intro with my family as I have 95% of what you had but I always have difficulty explaining it. that's how well your brain is working even in such a hellish situation!

  

Unofrtunately, I am not out yet as you can see from my signature. I am still on 3.425 mg Lexapro doing <1% cut every couple weeks. If I ever get out, it will be 7+ yrs giving this rate and assumming no other hiccup along the way. I am still going through all the fun experiences every moment.

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