jollygrant: protracted withdrawal from trazodone

[jollygrant]

Hi Friends, 

 

I went off of trazadone 5.5 months ago after 15 years of use for insomnia, and have been suffering from protracted withdrawal ever since.  The most debilitating symptom is severe depression that often manifests physically as pain in my heart, and a myriad of new drug sensitivities.  I have a few questions about other's experience's and/or recommendations.  

 

·       Has anyone had success with st. john's wort, 5 htp, homeopathy, or other approaches?

·       Will attempting to treat the symptoms with herbs, or ssris prolong the period of withdrawal?

·       Does anyone understand the mechanism behind the symptoms of protracted withdrawal coming in waves?

 

My preference would of course be to get through this without having to medicate the symptoms, but there are times when the depression feels so intolerable, I need to have another option for my own safety (I've been very proactive of finding alternative methods to deal with the depression, ie, meditation, exercise, support, etc. but they have a limited effect).  

 

I have read that in rare cases, protracted withdrawal can last years or be indefinite.  Given that I was on trazadone for 15 years, and I tapered much too quickly, I imagine mine may be a slow process.  

 

I have included a detailed history of my experience to give context for anyone who is interested.  

 

Thank you.

 

HISTORY:  

 

15 years ago, at the age of 23, I went through a healing crisis of sorts, dealing with issues of childhood trauma.  I went to a treatment center for depression, where I was put on a number of different drugs (as best I can remember: celexa, risperdal, trazadone, vistaril, and one or two others). The treatment center was beneficial for me - I did intensive therapy, and worked very hard on my own healing.  Within a year or two of returning, I tapered off all of the mediations I'd been put on, with the exception of trazadone.  I had had insomnia for most of my life and was under the impression that its only purpose was to treat sleeplessness.  I was unaware it was an antidepressant for the next 15 years, until after I began the tapering process. Even my naturopath continued to prescribe it without question.  

 

Over the last 15 years, I healed myself through intensive therapy, even becoming a therapist myself.  I build a successful business in a field I felt passionate about, combining therapy with an artistic discipline.  For years I contemplated getting off the trazadone but didn't feel like I could risk not sleeping with my demanding career.  A year ago, I decided to take sabbatical and travel the world, starting with an ayurvedic cleanse program in India.  

 

A couple years prior, I started to have the creeping suspicion that my medications (benadryl, alegra-D, singular, trazadone) were creating more symptoms than they were treating, and so began the withdrawal process before leaving for India.  At first I cut my trazadone from 150mg to 75mg and cut out the Benadryl completely.  I struggled with sleep, but more significantly, horrible nausea for about 6 months.  I attributed the sleep to the trazadone, but the nausea to the Benadryl (now I'm not so sure that was accurate - it may have been the large reduction of trazadone).  Luckily, I was able to treat the nausea with small doses of medical marijuana. I went off my other allergy mediations much more easily - with a week to two of acute symptoms that afterwards subsided completely.  

 

When I began my cleanse in India, I tapered the trazadone from 75mg to 0 in a matter of 5 weeks.  Way to fast given what I now know, but again, at the time, I had no idea what I was dealing with.  Each time I would decrease, I would have acute withdrawal symptoms for about a week which would then subside; mainly night terrors, sleeplessness, and irritability.  For the next three months I only managed between 3-5 hrs of sleep a night, but although it was frustrating, it was manageable, given that I was spending hours each day mediating.  My nausea went away after I tapered from 75mg to 50mg but for the first two weeks, I suffered from persistent sexual arousal disorder (pgad, the female version of priapism) - a nightmare which caused incredible discomfort as I was barely able to pee for two weeks.  Luckily, I figured out it was due to the trazadone withdrawal after some research.  That experience only made me more determined to get it out of my system, and quickly.  The PGAD disappeared when I tapered from 50 to 25mg.  

 

After my final dosage (I had basically just been taking a crumb for a week), I began experiencing the most horrific emotional pain I have ever experienced.  I often find myself at a loss for how to describe it as it's never felt like typical depression.  It was something like a combination of an ongoing panic attack with a grief stricken/shock-like feeling - like when you learn that your beloved has died and it knocks the wind out of you.  I felt a palpable heart pain -though it was clearly emotional in nature.  It is not the first time I've felt that heart pain, and may just be how my body metabolizes severe depression - but it was the most extreme experience I've had, and totally devoid of content.  

 

At the time, I had never heard of protracted withdrawal and so assumed I was having some kind of spiritual crisis.  I was staying at an ashram, and so spent many hours in meditation.  The symptoms gradually got a bit better over the first month, but then came back with a vengeance, though usually with some breaks of relief during each day when the heart pain would subside briefly and I'd get a bit of perspective.  The odd thing was that this 'depression' came seemingly out of the blue at a period in my life where I felt stronger and happier than I'd ever been before. 

 

After some research, and consulting with a colleague who specializes in psychiatric drug withdrawal, I realized I could be experiencing protracted withdrawal.  I tried to stay in India as long as possible to heal myself there, hoping it would pass quickly and I could continue my travels, but at some point the pain became too intolerable and I decided to come back to the States where I would have more resources to treat the symptoms (or so I thought).  I decided to stay with my family in the midwest while I figure this out, and enlisted the help of a wonderful holistic psychiatrist, who luckily recognized the symptoms (at that time - depression, arthritis, and gum pain) as protracted withdrawal.  

 

I first tried supplements, homeopathy, and st. john's wort, in an attempt to stay off SSRIs.  The St. John's Wort did provide some relief after week 5, but I was experiencing extreme fatigue and rapid hair loss.  My psychiatrist suggested I try a small dose of prosaic after weaning off the SJW in order to get through the protracted withdrawal.  

 

Over the next month I tried 4 different SSRIs in miniscule doses (Prozac, lexapro, celexa, wellbutrin) and had horrible adverse reactions to all - sleeplessness, panic, wired/restless leg syndrome, loss of appetite, migraines, nausea, diarrhea.  I had to take Clonazepam (luckily only one dose for each attempt at a new SSRI) to counter the reactions.  Next we tried SAM-E at 50mg/day.  I had some mild reactions, but after 6 days, felt wonderful - depression had subsided though I was a bit wired, but on day 7, I ended up with the same reactions as the other SSRIs and had to discontinue.  

 

Interestingly, I've taken almost all of these medications in the past without issue.  I was given zoloft twice during my life (once for chronic mononucleosis when I was a teenager and for two years for 12 days out of every month for endometriosis).  I had no problem on the drugs, but did experience acute withdrawal symptoms when I was going on and off the zoloft each month.  I had horrible dizziness, and only after thousands of dollars of mris and other tests did I realize from my own research that it was caused by my body going into withdrawal for two weeks of each month.  A few weeks after my final dose however, I was fine.  I swore never to touch another antidepressant - totally unaware that trazadone was one!  I also tried SAM-E at one point when I was experiencing depression after a total hysterectomy (for the endometriosis).  It didn't help but it also didn't have any adverse effects at the time.  The depression subsided when we were able to get my estrogen levels back on track.  

 

My psychiatrist works in cooperative clinic, so together we saw the nutritionist there, who tested me for deficiencies and then started me on a regiment of supplements.  As far as I can tell, I have not had any adverse reactions to the supplements, but have not felt improvement from them either.  For the past three months I have been on a very strict diet:  no grains, no dairy, no sugars, no caffeine, no alcohol, and no meat (my choice).  I basically just eat vegetables, lentils, lots of fish, and a few nuts.  I've also been adamant about making sure I get 1-3 hours of mild to moderate exercise/day.  This seems to be the one thing that routinely brings me a bit of relief, though only while I'm walking, moving, etc.  I am lucky to have a wonderful support system and minimal external stressors in my life at the moment.  I have tried my best to keep a positive attitude and am often successful, though I continue to get knocked out by the intensity of the heart pain when it arises, even with my myriad of coping strategies.  Having tried so many ssris, and then the SAM-E (last dose was 12 days ago), it's hard to know what my norm off of meds will be - if there is one.  

[mammaP]

Hi Jollygrant, welcome to SA.  I'm sorry that you need to be here but am glad that you found us.

 

First I will try and answer your first questions.

 

 Has anyone had success with st. john's wort, 5 htp, homeopathy, or other approaches?

We have a topic on supplements including St Johns wort here http://survivingantidepressants.org/index.php?/topic/606-important-topics-about-tests-supplements-herbs-treatments/

Many of us here have tried all kinds of supplements and lots of them, including SJW have worsened withdrawal symptoms.  

 

 Will attempting to treat the symptoms with herbs, or ssris prolong the period of withdrawal?

The only drug that is likely to help with withdrawal is the one that has been discontinued. Reinstating at a tiny fraction of the

normal dose can bring relief quite quickly but this is only when reinstated soon enough. After 3 months off the likelihood

of it helping gets lower. Some people have had relief at 6 months and occasionally longer but the sooner the better. 

Again, many herbs have made things worse for many people. 

 

About reinstating http://survivingantidepressants.org/index.php?/topic/3079-about-reinstating-and-stabilizing-to-stop-withdrawal-symptoms/

 

  Does anyone understand the mechanism behind the symptoms of protracted withdrawal coming in waves?

 

About the windows and waves pattern of recovery. http://survivingantidepressants.org/index.php?/topic/82-the-windows-and-waves-pattern-of-recovery/

 

Withdrawal can go on for years for some people but the brain is a remarkable organ and has the ability to regrow. 

 

We find that most people do well with a good quality fish oil and magnesium  for withdrawal symptoms. There are many

topics in symptoms and self care covering things that members have tried and reported on so you might find it helpful

to look at those. 

 

It looks like you might have a good psychiatrist there who may be willing to learn about withdrawal, the fact that you 

were prescribed miniscule doses is a change from the norm, which seems to be lots of different drugs in high doses! 

If you were to try reinstating, a very tiny dose of trazodone might help, starting with just 0.5mg. When you have stabilised

you can then taper from that small dose.

 

Thank you for filling out your signature, it is very helpful , could you list your supplements too? And the dose of

trazadone you were on  and how you tapered. 

[jollygrant]

Supplement Mixture.tiffThanks so much for your response.  There's not enough room in the signature line for all of my supplements so I have listed them below.  They've all been recommended by a nutritionist based on my test results.  She also ordered a custom-made supplement, the ingredients of which are listed in the attachment.  

 

My psychiatrist is against restarting the trazadone since I experienced persistant genital arousal disorder upon withdrawal, and trazadone is known for causing priapism.  I may be able to convince her to give it a try, but given that I've been totally off of it for 5.5 months, it sounds like that might be a long shot?  That said, a long shot might be worth it.  

 

Supplements:

 

·      DHEA (50 mg)

·      CoQ10 (100 mg)

·      EPA (155mg)/DHA (310mg)

·      Borage Oil (2000 mg)

·      Ferrochel (Iron 27 mg)

·      Magnesium Glycinate Plus (440mg)

·      Glycine Powder (1000mg)

·      S-Aceytl Glutathione:  (200 – 400mg)

·      L-theanine (200 mg)

·      Metalloclear Metagenics (3, 2x day)

·      Ultraflora DF probiotic (30 billion lactobaciluus acidophilus, bifodobacterium)

·      Melatonin (3mg)

·      Flower remedies as needed

·      Custom created multivitamin/Mineral powder from Metabolic Maintenance (see Metabolic Maintenance Supplement)

 

Prescriptions:

 

·      Levoxyl (50mcg)

·      Liothyronine (Cytomel, 5mcg)

·      Estradiol Patch, Vivelle Dot (0.125)

 

 

[Petunia]

Hi jollygrant,

Welcome from me too.  As MammaP mentioned, the only recognized treatment for withdrawal is a small dose of the drug you are withdrawing from.  This can sometimes work to relieve the withdrawal symptoms, then this small dose can be slowly tapered from.  Please read through the reinstatement link MammaP posted.

 

"No matter what you read about "natural" supplements or herbs, or even if an alternative practitioner, naturopath, or integrative doctor recommends them, you cannot treat withdrawal syndrome as though it is "natural" depression.

In "natural" depression, your nervous system is normal and it is operating your body properly. In withdrawal syndrome, your nervous system is struggling to get back to normal operation. Don't try to speed this along with anything that may be stimulating, or you may further unbalance it."

 

I'm concerned that some of the supplements you are taking may be having an adverse effect, please read through this topic which contains information about supplements:

 

http://survivingantidepressants.org/index.php?/topic/606-important-topics-about-tests-supplements-herbs-treatments/

 

Please let us know if you decide to try reinstatement.  A small amount and then a much slower taper might not cause PGAD

[Altostrata]

Welcome, JG.

 

What kind of tests were done to determine that supplement mix?

 

You're taking a large dose of DHEA, plus thyroid and estrogen. I would read up on the side effects of DHEA mixed with those hormones.

 

Had your psychiatrist seen prolonged withdrawal syndrome before?

[primrose]

·       Has anyone had success with st. john's wort, 5 htp, homeopathy, or other approaches?

·       Will attempting to treat the symptoms with herbs, or ssris prolong the period of withdrawal?

·       Does anyone understand the mechanism behind the symptoms of protracted withdrawal coming in waves?

 

My preference would of course be to get through this without having to medicate the symptoms, but there are times when the depression feels so intolerable, I need to have another option for my own safety (I've been very proactive of finding alternative methods to deal with the depression, ie, meditation, exercise, support, etc. but they have a limited effect).  

 

I have read that in rare cases, protracted withdrawal can last years or be indefinite.  Given that I was on trazadone for 15 years, and I tapered much too quickly, I imagine mine may be a slow process.  

 

I have included a detailed history of my experience to give context for anyone who is interested.  

 

Thank you.

 

HISTORY:  

 

15 years ago, at the age of 23, I went through a healing crisis of sorts, dealing with issues of childhood trauma.  I went to a treatment center for depression, where I was put on a number of different drugs (as best I can remember: celexa, risperdal, trazadone, vistaril, and one or two others). The treatment center was beneficial for me - I did intensive therapy, and worked very hard on my own healing.  Within a year or two of returning, I tapered off all of the mediations I'd been put on, with the exception of trazadone.  I had had insomnia for most of my life and was under the impression that its only purpose was to treat sleeplessness.  I was unaware it was an antidepressant for the next 15 years, until after I began the tapering process. Even my naturopath continued to prescribe it without question.  

 

Over the last 15 years, I healed myself through intensive therapy, even becoming a therapist myself.  I build a successful business in a field I felt passionate about, combining therapy with an artistic discipline.  For years I contemplated getting off the trazadone but didn't feel like I could risk not sleeping with my demanding career.  A year ago, I decided to take sabbatical and travel the world, starting with an ayurvedic cleanse program in India.  

 

A couple years prior, I started to have the creeping suspicion that my medications (benadryl, alegra-D, singular, trazadone) were creating more symptoms than they were treating, and so began the withdrawal process before leaving for India.  At first I cut my trazadone from 150mg to 75mg and cut out the Benadryl completely.  I struggled with sleep, but more significantly, horrible nausea for about 6 months.  I attributed the sleep to the trazadone, but the nausea to the Benadryl (now I'm not so sure that was accurate - it may have been the large reduction of trazadone).  Luckily, I was able to treat the nausea with small doses of medical marijuana. I went off my other allergy mediations much more easily - with a week to two of acute symptoms that afterwards subsided completely.  

 

When I began my cleanse in India, I tapered the trazadone from 75mg to 0 in a matter of 5 weeks.  Way to fast given what I now know, but again, at the time, I had no idea what I was dealing with.  Each time I would decrease, I would have acute withdrawal symptoms for about a week which would then subside; mainly night terrors, sleeplessness, and irritability.  For the next three months I only managed between 3-5 hrs of sleep a night, but although it was frustrating, it was manageable, given that I was spending hours each day mediating.  My nausea went away after I tapered from 75mg to 50mg but for the first two weeks, I suffered from persistent sexual arousal disorder (pgad, the female version of priapism) - a nightmare which caused incredible discomfort as I was barely able to pee for two weeks.  Luckily, I figured out it was due to the trazadone withdrawal after some research.  That experience only made me more determined to get it out of my system, and quickly.  The PGAD disappeared when I tapered from 50 to 25mg.  

 

After my final dosage (I had basically just been taking a crumb for a week), I began experiencing the most horrific emotional pain I have ever experienced.  I often find myself at a loss for how to describe it as it's never felt like typical depression.  It was something like a combination of an ongoing panic attack with a grief stricken/shock-like feeling - like when you learn that your beloved has died and it knocks the wind out of you.  I felt a palpable heart pain -though it was clearly emotional in nature.  It is not the first time I've felt that heart pain, and may just be how my body metabolizes severe depression - but it was the most extreme experience I've had, and totally devoid of content.  

 

At the time, I had never heard of protracted withdrawal and so assumed I was having some kind of spiritual crisis.  I was staying at an ashram, and so spent many hours in meditation.  The symptoms gradually got a bit better over the first month, but then came back with a vengeance, though usually with some breaks of relief during each day when the heart pain would subside briefly and I'd get a bit of perspective.  The odd thing was that this 'depression' came seemingly out of the blue at a period in my life where I felt stronger and happier than I'd ever been before. 

 

After some research, and consulting with a colleague who specializes in psychiatric drug withdrawal, I realized I could be experiencing protracted withdrawal.  I tried to stay in India as long as possible to heal myself there, hoping it would pass quickly and I could continue my travels, but at some point the pain became too intolerable and I decided to come back to the States where I would have more resources to treat the symptoms (or so I thought).  I decided to stay with my family in the midwest while I figure this out, and enlisted the help of a wonderful holistic psychiatrist, who luckily recognized the symptoms (at that time - depression, arthritis, and gum pain) as protracted withdrawal.  

 

I first tried supplements, homeopathy, and st. john's wort, in an attempt to stay off SSRIs.  The St. John's Wort did provide some relief after week 5, but I was experiencing extreme fatigue and rapid hair loss.  My psychiatrist suggested I try a small dose of prosaic after weaning off the SJW in order to get through the protracted withdrawal.  

 

Over the next month I tried 4 different SSRIs in miniscule doses (Prozac, lexapro, celexa, wellbutrin) and had horrible adverse reactions to all - sleeplessness, panic, wired/restless leg syndrome, loss of appetite, migraines, nausea, diarrhea.  I had to take Clonazepam (luckily only one dose for each attempt at a new SSRI) to counter the reactions.  Next we tried SAM-E at 50mg/day.  I had some mild reactions, but after 6 days, felt wonderful - depression had subsided though I was a bit wired, but on day 7, I ended up with the same reactions as the other SSRIs and had to discontinue.  

 

Interestingly, I've taken almost all of these medications in the past without issue.  I was given zoloft twice during my life (once for chronic mononucleosis when I was a teenager and for two years for 12 days out of every month for endometriosis).  I had no problem on the drugs, but did experience acute withdrawal symptoms when I was going on and off the zoloft each month.  I had horrible dizziness, and only after thousands of dollars of mris and other tests did I realize from my own research that it was caused by my body going into withdrawal for two weeks of each month.  A few weeks after my final dose however, I was fine.  I swore never to touch another antidepressant - totally unaware that trazadone was one!  I also tried SAM-E at one point when I was experiencing depression after a total hysterectomy (for the endometriosis).  It didn't help but it also didn't have any adverse effects at the time.  The depression subsided when we were able to get my estrogen levels back on track.  

 

My psychiatrist works in cooperative clinic, so together we saw the nutritionist there, who tested me for deficiencies and then started me on a regiment of supplements.  As far as I can tell, I have not had any adverse reactions to the supplements, but have not felt improvement from them either.  For the past three months I have been on a very strict diet:  no grains, no dairy, no sugars, no caffeine, no alcohol, and no meat (my choice).  I basically just eat vegetables, lentils, lots of fish, and a few nuts.  I've also been adamant about making sure I get 1-3 hours of mild to moderate exercise/day.  This seems to be the one thing that routinely brings me a bit of relief, though only while I'm walking, moving, etc.  I am lucky to have a wonderful support system and minimal external stressors in my life at the moment.  I have tried my best to keep a positive attitude and am often successful, though I continue to get knocked out by the intensity of the heart pain when it arises, even with my myriad of coping strategies.  Having tried so many ssris, and then the SAM-E (last dose was 12 days ago), it's hard to know what my norm off of meds will be - if there is one.  

 

Hi Jollygrant

 

I recently halved my trazodone dose in steps over a period of a few months, from 300mg to 150mg. I wasn't planning on getting off it, but I felt like 300mg was zombifying me, and the 150mg feels much better, so I am sticking with that.

I wouldn't necessarily advise others to taper down by 150mg in a few months, as a slower descent is advised on these boards, it's just that I think my original dose was too strong.

 

What was your dose?

It may be that you reduced too quickly.

 

I agree with mammaP regarding magnesium, and I find it a great muscle relaxer, as it is enough to help get me to sleep.

 

Yikes! traz widrawalk gave you night terrors I always hate the irritibity of drug withdrawall   To me it feels like i am mad enough to destroy something or myself.

 

Sorry you had to go through priapism, a common traz side effect I think.

I got dry eyes from them, they helped me sleep, but dumbed me down and dulled my interest, so the lower dose feel better as I am less trazodoped.

 

Thank you for sharing your experiences, and I will take it as a warning, when I get round to tapering the rest of mine down, a warning to take longer than five months, cos I don't fancy a taster of that emotional pain you so very well described.

[jollygrant]

Hi Friends, 

 

Thanks so much for all your responses.  I spoke to my psychiatrist about re-instating trazadone and we both agreed it was just too big a risk with the priapism, a condition that can require surgery.  To answer some questions:

 

Primrose - I think every person responds differently to withdrawal, and heart pain may be my own unique expression.  But that said, having endured almost 6 months of this (and I know there are others who have endured much more) - I don't think you can go off slowly enough!  

 

Altostrata - Blood & urine tests were done to determine the supplement mixture.  I believe the test was from Genova Diagnostics, and the custom supplement mixture comes from a company called Metabolic Maintainance Products. I do not feel any worse on the supplements than I did before taking them, so I don't think these specific supplements are causing a problem.  I feel for the folks who have reported an ability to take any supplement in withdrawal.  I haven't felt any significant improvement from the supplements yet, but if nothing else I feel they're strengthening my immune system.   As for the DHEA, I've been on that for years following a total hysterectomy.  My naturopath has been monitoring my hormones (estrogen, DHEA & thyroid) and it's taken us years to find the right balance, so I have no intention of messing with any of that, and certainly not at this point.  

 

I don't know if my psychiatrist has treated protracted withdrawal or not before, but she is certianly knowledgable.  I have shared this blog with her and many of the suggestions (she's wonderful about doing research and persisting despite setbacks), though ultimately she feels that each case is different and we have to keep trying things to see if they work for my individual body.  Given that I seem to do ok with supplements, I have to agree, though it is really helpful to see similar patterns with other's responses to medications and withdrawal symptoms.  

 

Other than the supplements, I haven't been on any medications (SSRIs, SAM-E, etc) for over 2 weeks now.  I am starting to feel a bit better though I don't know whether this is an upward trend or a brief window.  I feel less acute heart pain, but a more consistent level of moderate depression & extreme irritability.  Sleep continues to be challenging though I do take magnesium & melatonin (it helps).  I also have extreme exhaustion throughout most of the days, and have been experiencing a new symptom of dizziness in the late afternoons.  Still, all that is a step up from the heart pain, and I grateful for any small shift.  

 

My plan with my psychiatrist is to try to stay off everything for the next three weeks to give my system a rest, and then possibly try a low dose of 5 htp if the depression still feels significant.  At one point during the withdrawal, I tried Tryptophan and did ok with it, and because it's a different mechanism than ssris or sam-e, my psychiatrist thinks it could be worth a shot.  If anyone has had experiences with 5-HTP I'd love to hear them.  

 

Thanks again for all your comments and feedback.  

 

PS>  I am always hungry and feel like I could eat all day.  I have to be so disciplined not to do so.  I read that serotonin is an appetitite suppressant.  Could my lack of serotonin be causing this insessant hunger?

[Altostrata]

See What is withdrawal syndrome?

 

For discussions of your supplements and others, please see our Symptoms and Self-Care forum http://tinyurl.com/3hq949z

 

As far as we know, there is no one supplement or combination that can reverse withdrawal syndrome.

 

As for reinstatement of a small amount of trazodone: Side effects are dosage-related. A dose as small as 5mg might alleviate the withdrawal symptoms and aid sleep while not triggering PGAD. On the other hand, you might not react well to it. Whether you want to try this, it's up to you. (Priapism and surgery for it refers specifically to the penis, I have never heard of a woman having surgery for PGAD.)

 

If your psychiatrist is making decisions based on balancing neurotransmitters: Theories based on balancing serotonin, dopamine, norepinephrine, GABA etc. are invalid and always were. You do not have low serotonin of any type. Your nervous system has been destabilized by too-fast withdrawal, that is why you are having symptoms, including depression, dizziness, and hunger. (It is also possible your supplement mix is affecting you differently now.) Adding serotonin analogs such as SAM-e and tryptophan may backfire. Some react badly to 5-HTP.

 

When it comes to dealing with withdrawal syndrome, we haven't found alternative practitioners to be any more helpful than conventional doctors.

 

You may experience waves of depression, etc. for some time as your nervous system heals. Many of this, including myself, have dealt with this. Please continue to practice alternative methods to deal with the depression, ie, meditation, exercise, support, etc. -- eventually, you will find your symptoms lighten.

[jollygrant]

Hi Friends, 

 

Has anyone heard of, or had experience with the Walsh Approach for protracted withdrawal or underlying imbalances?

 

http://www.walshinstitute.org 

 

http://mensahmedical.com/_index.php

 

Thanks!   

[Rhiannon]

I think our member Meimeiquest has used the Walsh protocol and in fact there is a thread or two about it. Do a Google search "surviving antidepressants Mensah" or "Walsh" and you should be able to find it.

 

My own observation of the hundreds of folks who come and go through here is that overall supplements generally seem to make things worse more often than better, particularly once you start messing with hormones or stimulants or stuff that affects neurotransmitters. Our brains need stability to heal, they don't need things being stirred up. But as I say, I think Meimeiquest is quite happy with her experience, so as with everything, everyone's mileage varies.

 

Personally in protracted withdrawal I would probably shoot for simplicity, gentle self-care, etc. That's just me based on my own body and what I've seen with others. You absolutely must do what seems right for you--only you know your own body, and your own body is the expert.

[jollygrant]

Question for those of you who experienced multiple drug sensitivies during protracted withdrawal and are now recovered:

 

Are you able to take supplements & medications once your nervous system has rebalanced itself, or are we unable to tolerate most medications for the rest of our lives?  I'm wondering if I'll be able to take B or other vitamins, minerals, or amino acids (or god forbid even short-term anti-depressants if needed) after I recover.  

 

Thanks!

[Altostrata]

I am still sensitive to drugs, though a lot less sensitive than I was 5 years ago.

[jollygrant]

Hey Friends, 

 

I'm now 8 months off the Trazadone.  I started feeling some progress for the first time a few months ago:  I had my first "windows,"  where I would have up to a week of feeling almost like my old self, followed by a week or so of the debilitating heart pain/depression (emotional, not physical).  Because of this, and some exciting (though demanding) work developments, I decided to leave my family's place in the Midwest and try to return to my life on the West Coast:  living alone (but with friends nearby), and working full time.  I've been back for about a month now, and things seem to have taken a turn for the worst.  I'm now on two plus weeks of excruciating heart pain with no relief (longest wave since I started having waves and windows), and feeling like I can't tolerate much more of this - certainly not on my own or in my old routine.  I'm wondering if it was naive to try to resume my old life too quickly, though overall - work has been a really helpful distraction from the withdrawal.  

 

It's so challenging to try to take care of myself during this period when what I need changes week to week according to the waves and windows.  When I'm having a wave, it's clear to me that I need to go back to the supportive care of my family to get through this (a privilege that I'm aware not everyone has), but when I'm having a window, I think I need to tough out the waves and continue to build my life where I am - otherwise I will have the added depression of giving up work that is meaningful for me, esp, during the better periods.  The added challenge is not having any idea how long this will last.  If it's just a few more months, it seems crazy to give up work I love, but if it's years, it seems crazy to try to push through the stress and agony when it may just prolong my recovery.  

 

How do you all navigate this?  How do you make decisions for the future when what you need changes week to week and there's no sense of how long this will last?  Is it normal to have such a long wave after a pattern of improvement?

 

Thanks!

[Petunia]

Hi jollygrant,

A 2 week wave is not at all unusual, in fact I've read about waves lasting anywhere from 2 hours to 2 months, and longer, even after significant windows.  There really seems to be no way to predict what pattern recovery is going to take, but one thing I've noticed is that waves always end eventually and they decrease over time, with windows increasing and lasting longer.

 

Is heart pain the only symptom you're having at the moment?

 

Have you read the windows and waves topic?

 

The Windows and Waves Pattern of Recovery

If I were you I would give it a few more weeks before making any life changing decisions, if you can manage it, another window might be just around the corner.

[jollygrant]

Thanks Petu.  There have been a number of other physical symptoms that come and go, but the heart pain is the most disturbing by far. 

[Petunia]

Are you still taking all the supplements you listed in post #2?

 

A while back, someone posted a topic about heart pain:

 

chest pain and stabbing pain in the heart

 

You might like to add to the discussion and ask if anyone else is experiencing similar symptoms at the moment.

[jollygrant]

I'm still taking most of those supplements, but I got off the vegan fit food shake since it had tyrosine in it which was making me wired and anxious.  I also stopped the supplement mixture and melatonin.  I do small doses of pot as needed for sleep.  I've been doing trial and error with the remaining supplements and seem to feel a bit better with them than without.  I did go to Mensah Medical and will likely start their supplements sometime soon.  I'm doubtful it will do anything for the protracted withdrawal, but it may help to elevate my baseline and address the reason I had to get on the insomnia medication in the first place.

 

Thanks for the link to the heart pain/chest pain discussion.  While mine does feel physical, it's clearly emotional in nature - I've had the same kind of pain when I've lost someone close to me or had other kinds of sudden grief/shock, so it just must be how extreme depression manifests for me.  

[Altostrata]

What did they tell you at Mensah, jg?

[jollygrant]

I'm still waiting for the test results from Mensah.  My guess is that it may help to treat whatever the underlying causes are that led me to meds in the first place, but I'm skeptical about anything helping with the protracted withdrawal.  

[Altostrata]

Please keep us posted.

[jollygrant]

Hi Friends, 

 

I'm now a year into this discontinuation syndrome, and still really struggling.  My acute heart pain has improved a bit, but the overall depression seems more pervasive. I've also been experiencing  a new symptom - what I think are cortisol spikes (not necessarily induced by anxiety) that make me feel amped up, jittery, and sleepless. I'm lucky if I get more than 4 hrs these last couple of weeks.  The only thing that seems to help the insomnia is pot, but I'm nervous to rely on any substance after this experience.  

 

My Mensah results came back as undermethylated with pyrrole disorder.  There has been some speculation that the withdrawal has made the pyrrole worse - which is why I'm experiencing it as depression.  Unfortunatley, I haven't been able to tolerate the Mensah supplements with my hypersensitivity to medication.  I'm having adverse & paradoxical reactions to things I used to take no problem. 

 

Here are my questions, which I'm hoping you might be able to answer:

 

- Is depression a common feature of withdrawal that goes away over time, or is it particular to me and potentially indicitive of an underlying issue?

 

- Why is it that I/we are experiencing atypical protracted withdrawal, whereas others do not?  Does this point to some underlying issue?

 

- My psychiatrist (bless her heart) wants me to keep trying different supplements and/or minute doses of pharmacuticals because she doesn't think I should still be suffering like I am.  She totally gets the protracted withdrawal and chemical sensitivies - just doesn't want to give up and is convinced something may help.  Has anyone found this to be true?  If I continue to experiment and then experience paradoxical reactions - am I potentially slowing down the healing process?

 

Thank you! 

[Petunia]

Thank you for updating jollygrant, I'm sorry you are still having symptoms, but you are not alone in still suffering after more than a year off, there are many of us here in protracted withdrawal trying to cope with difficult symptoms as we slowly recover. I will try and answer your questions or point you towards topics where you may find more help.

 

 

 I've also been experiencing  a new symptom - what I think are cortisol spikes (not necessarily induced by anxiety) that make me feel amped up, jittery, and sleepless. I'm lucky if I get more than 4 hrs these last couple of weeks.

 

Reducing cortisol and waking with panic or anxiety 

 

The only thing that seems to help the insomnia is pot, but I'm nervous to rely on any substance after this experience.  

 

 

cannabis, THC or marijuana to ease withdrawal symptoms

 

My Mensah results came back as undermethylated with pyrrole disorder.  There has been some speculation that the withdrawal has made the pyrrole worse - which is why I'm experiencing it as depression.

 

The pyroluria fallacy

 

 

- Is depression a common feature of withdrawal that goes away over time, or is it particular to me and potentially indicitive of an underlying issue?

 

 

Depression (Anhedonia, apathy, demotivation )  is a common symptom in withdrawal, even for people who had never experienced this before. As with other withdrawal symptoms, this one will go away in time, it can often be one of the last symptoms to go.

 

 

- Why is it that I/we are experiencing atypical protracted withdrawal, whereas others do not?  Does this point to some underlying issue?

 

 

One theory of antidepressant withdrawal syndrome

 

protracted withdrawal symptoms -- why?

 

 

- My psychiatrist (bless her heart) wants me to keep trying different supplements and/or minute doses of pharmacuticals because she doesn't think I should still be suffering like I am.  She totally gets the protracted withdrawal and chemical sensitivies - just doesn't want to give up and is convinced something may help.  Has anyone found this to be true?  If I continue to experiment and then experience paradoxical reactions - am I potentially slowing down the healing process?

 

"There are no supplements to fix withdrawal symptoms."  No supplement can compensate for a too-fast taper. While fish oil, magnesium, and some other supplements might improve general health and reduce the intensity of symptoms for some people, only time can cure withdrawal symptoms.

 

See:  What to expect from my doctor

 

Additionally, if you are continually causing more destabilization of your nervous system, subjecting it to adverse effects and paradoxical reactions by trying different drugs and supplements, you are increasing stress and slowing recovery. Many people become very sensitive to drugs and supplements after they've experienced withdrawal symptoms for even a short time. Do not count on taking the big risks you used to take. The nervous system is very complicated. It can repair itself, but it takes time to do this.

See:

The rule of 3KIS: Keep it simple. Keep it slow. Keep it stable.

 

What supplements are you taking now?

[jollygrant]

Thanks so much for your response.  The supplement question is a good one.  I have had paradoxical reactions to many of the supplements I've tried, and overall found them more harmful than helpful.  However, there are a few that do seem to work well, esp. for a time, and I'm hesitant to stop trying them new things alltogether when I do occassionally find relief.  For instance, I recently added melatonin and that has been helpful.  

 

According the Mensah results - because I'm undermethylated and have pyrrole (for whatever that's worth), I should NOT be taking Omega 3s - and should be taking Omega 6s instead (thus the borage oil) and avoiding fish, nuts, etc.  

 

My psychiatrist would like me to try phenibut as well for sleep - has anyone had experience with that?  She also mentioned phosphatidylserine as possibility - but that one looked potentially activating to me.  

 

I'm currently on:

 

·      DHEA (50mg) - for total hysterectomy

·      Borage Oil (2000mg)

·      Ferrochel (Iron 27mg)

·      Magnesium (400mg)

·      Cal/Mag (500mg/250mg)

·      Glycine Powder (1500mg)

·      Gaba (750mg 6 days/wk)

·      Theracurmin (600mg)

·      Potassium (100mg) - need for muscle spasms

·      Vitamin C (1250mg)

·      Melatonin (1.5mg)

·      Similase (digestive enzymes)

·      Ultimate Flora Vaginal Support (50 billion lacto/bifido cultures) - probiotic

·      Oregano Oil (occasional)

 

I'm also on cytomel & levoxyl for hypo-thyroid/hashimotos & the estrogren patch for a total hysterectomy.  I've been fine on these for years and feel that messing with either could make my depression significantly worse.  

[Altostrata]

Hi, jollygrant.
 
Please do NOT worry about methylation. It's so complicated, even the practitioners who claim to be most knowledgeable "treat" it by trial and error. "Treatment" is working is indicated when you're feeling better.
 
If you feel better taking fish oil, take it.
 
That is a lot of supplements. Did you add each one by one? Did you test your reaction first?
 
According to advice I've been given, phenibut is similar to a drug called baclofen, which works on GABA. As with everything else, a paradoxical reaction is possible.
 
Please see our topics about phosphatidylserine.

 

Also, please read all the links in Petunia's wonderfully complete response.

[jollygrant]

Thanks Alto.  I did add those supplements one by one, and found that some make no difference, but some did make me feel at least short term improvement.  Hoping that phenibut will be helpful since I don't seem to have an adverse reaction to gaba.  

[Altostrata]

I'd be very, very careful with it.

 

Quite frequently, it's prescribed as a very expensive supplement called Kavinace, which also contains vitamin B6 and taurine. You may wish to use search to see others' experience with it.

 

See http://www.raysahelian.com/phenibut.html

[jollygrant]

Can anyone explain to me why there is a 5 month window of being able to reinstate the drug that caused the discontinuation syndrome?  Does anyone have experience with trying to go back on at a very low dose after 13 months?

 

Also - I tried to read through the various peer reviewed articles to find some support for my doctors, but found myself utterly depressed by the fact that most didn't acknowledge the peristance of discontiuation syndrome after a few months.  Is there even one, peer-reviewed article out there that validates our experience for those of us still experiencing symtpoms over a year out, and/or with inability to tolerate medication & supplements we once were?

 

Thanks!

[jollygrant]

Hello, 

 

- Can anyone explain to me why there is a 5 month window of being able to reinstate the drug that caused the discontinuation syndrome?  Does anyone have experience with trying to go back on at a very low dose after 13 months?

 

 - I tried to read through the various peer reviewed articles to find some support for my doctors, but found myself utterly depressed by the fact that most didn't acknowledge the peristance of discontiuation syndrome after a few months.  Is there even one, peer-reviewed article out there that validates our experience for those of us still experiencing symtpoms over a year out, and/or with inability to tolerate medication & supplements we once were?

 

 - I'm finding that the my windows and waves are getting progressively longer (from days, to weeks to month) - but the waves are still not getting any shorter - just longer periods of both.  Is that common?

 

- I've been suffering horrible fatigue for the last month.  Any possibility that it's a new withdrawal symptom that has kicked in after a year?  Insomnia doesn't help, but doesn't seem to be the culprit.  Has anyone found anything to help with sleep that won't exacerbate our nervous systems?

 

Thanks!

 

Ch

[jollygrant]

Hi Friends, 

 

Putting this out there in case anyone does a search for these terms, as I've recently learned some valuable info that could potentially pertain to more of us.  I've been suffering from Discontinuation Syndrome for almost two years now since going off Trazadone (had been on 15 yrs for insomnia).  Since then, I've experienced horrendous waves of depression, extreme fatigue, insomnia, reactivity to medication, and a host of other symptoms of Dysautonomia.  After a fluke car accident a couple of months ago, I was first diagnosed by a physical therapist with Ehler's Danlos Syndrome (EDS).  She saw this in my mildly hyper-mobile joints and symptoms of protracted withdrawal.  EDS symptoms can be present since birth, or triggered by trauma/stress (such as withdrawal).  In my case, I'd had mild symptoms since childhood, but things really emerged after withdrawal.  

 

After many medical failures, I recently saw an amazing neurologist, Dr. Alexandru Barboi in Chicago, who then officially diagnosed me with EDS, and dysautonmia/POTs (postural orthostatic tachycardia syndrome).  He believes I've always had this, and the withdrawal simply triggered it.  He described all the symptoms of discontinuation syndrome to a T and really understood what I was going through.  From what I understand, EDS is not nearly as rare as was once thought.  It's simply rarely diagnosed.  Numbers range from as high as 1 in 5, to as low as 1 in 10,000.  

 

He said with patients like me, all someone has to do is hold up a medication and we'll react to it.  He also said that doctors would always want to push meds down my throat, but I should resist unless my life is in danger, or it was a quality of life issue (note:  I did not have this issue pre-withdrawal).  He had some good tips like compression socks and mild exercise - most of which everyone on here knows.  No cure unfortunately, but once you know what it is, you can learn to live with it.  

 

We often wonder why some of us are more prone to Discontinuation Syndrome than others.  This could be one answer. It is of course, only a theory, but may be worth looking into since it takes an average of 15 - 30 yrs to be diagnosed, and many EDS/POTs patients are incorrectly diagnosed with depression, anxiety, bipolar, and other psychiatric illnesses and treated with antidepressants.  

 

In case it's useful for anyone; another avenue to explore.

[MMMM]

Hi @jollygrant, how are you doing these days?