mblair: Severe pain after coming off SSRIs! Help! Please read!

[mblair]

What you are about to read is long but I urge you to PLEASE read it in its entirety! I am desperate for answers/help!! 

 

So a little quick history about me:

 

-Im a 29 year old healthy female 

-Lifelong history of anxiety and panic disorder with agoraphobia

-Been on several different SSRIs over the years including Paxil, Prozac, Zoloft, Celexa and Viibryd

-None ever worked for me at all except Celexa

-I was on Celexa for right about 7 years when it suddenly stopped working..and thats where my nightmare begins.

 

I had been taking Celexa for about 7 years when out of the blue last November I started having the oh so familiar problems when out and about. Panic and anxiety through the roof. This continued and got worse until around March or April when I finally went in to see my Dr about it. At that point I was unable to pretty much even carry on a conversation, I starched at my face and body and my husband pretty much had to do all the talking. It was all I could do to not pass out and or run out of the office. 

 

She concluded quickly that the Celexa had “washed out” or rather quit being effective for me. I was devastated as this was the only drug that had worked for me (although it did add on an extra 40pds) and I was terrified about starting on another SSRI. But alas..she recommended a newer drug called Viibryd. I was so sick that at that point I didn’t have the time to sit and research anything so I agreed to try it. All total I was on it for around 8 weeks. Eight weeks of pure hell!!!! Little did I know that this was just the beginning. 

 

The Dr said that since the Celexa was essentially not working anymore I could just taper down off in a few days and then start up the Viibryd starter pack. I knew this was going to be awful as there were many times I missed a dose of Celexa and felt like death warmed over with horrible brain shocks. Well, I was right..it was pretty much pure hell but I held on as much as possible because I had the hope that the Viibryd would soon kick in and things would be back to normal. Wrong. 

 

From the first small dose all the way up to the full 40mg dose these are a few of the things I experienced while on Viibryd:

 

-Severe, worsened anxiety and panic

-Inability to concentrate, function or carry on any kind of conversation

-Drop outs, or rather periods of blacking out completely with no memory of what happened

-Severe rage and anger causing outbursts of screaming and crying fits

-Horrible sleep paralysis, my tongue would go numb, body locked into a strange tingling state (same feeling as when your passing out) and I was completely unable to wake up! Husband had to force me awake. I also could not take a breath at all while in this state. This would all happen IMMEDIATELY after laying down and closing my eyes. Once locked into this state the demonic nightmares would start. This was all night. Every night. 

-At 40mg I began having severe stabbing like pains in my feet. The pain was so severe I had trouble walking and taking a shower was nearly impossible. It felt like stabbing on the bottoms, sides and tops of my feet. They hurt equally as bad when laying or sitting with nothing touching them. 

 

That was all over a period of 8 weeks.

 

My husband and I decided to go and see a psychiatrist to get some answers as at this point I was suicidal at best. To our surprise he ended up being a holistic psychiatrist (never even knew those existed) and told me flat out to stop taking the Viibryd. He said I should have stopped taking it as soon as I was having the reactions in the beginning. I explained to him that the Dr had told me that it would take a while to adjust to a new medication and adjust from withdrawal on the Celexa so I figured it was normal? Also, I questioned him saying to suddenly STOP taking the Viibryd cold turkey. But he insisted it would be fine. He recommended a strict and very specific list of vitamins, said to drink a lot of fruit juice as it was important for glucose in the brain. (This guy is highly regarded, awarded and has written books on anxiety disorders) He also sold me a bottle of something called Pharma Gaba to take several times a day. So we ended up stopping my Viibryd after tapering it ourselves over about 4 days. Needless to say…pure hell. Words can’t describe. 

 

Now all along my husband and I firmly believed that the sudden severe foot pain was a side effect of the Viibryd. After all, we looked up all of the other things I was going through (see list above) and every single one were known issues with the drug. Well, joint paint was another listed side effect. 

 

So fast forward a few weeks. I was still going through the typical withdrawals from brain zaps, severe fatigue, flu like feelings etc etc. I also still had pain in my feet but only off and on. It would come and go from one day to the next. (I tried what the psychiatrist recommended but didn’t seem to find the Pharma Gaba helping although maybe it did and I was just so bad I didn’t notice. The vitamins upset my stomach (belching up fish oils) so I stopped taking them. I do need to start taking them again)

 

I have now been off all SSRIs for about 9 weeks. I have have intense pain in my feet, knees, hips, fingers and elbows. Main amount of pain and issues are my feet. Stabbing, feeling like they are broken in the toe joints and tops of my feet, feeling like I have zero padding under my feet no matter what I am wearing. The tops, sides, bottoms. My toes…my ankles as well. Strange stabbing/electrical pains just completely random…to feeling like when I walk the bones in the top of my feet are broken.

 

So I went back to the Dr. about 3 or so weeks after being off the Viibryd and told her all the updates. I told her that while I expected to still have severe anxiety issues when stopping the medications (lets face it..I was after all on an SSRI for a reason!) I didn’t expect the pain to stay. So she examined me and decided to run some blood tests. At this point I was worried it could be RA or something like that and my Dr expressed some concern for that too. The following are what she tested for:

 

WBC

RBC

Hemoglobin

Hematocrit

MCV

MCH

MCHC

RDW

Platelets

Neutrophils

Lymphs

Monoctyes

Eos

Basos

Neutrophils (Ablsolute)

Lymphs (Absolute)

Monocyes (Absolute)

Eos (Absolute)

Baso (Absolute)

Immature Granulocytes

Immature Grans (abs)

 

 

The results: She said everything came back completely normal with the exception of my vitamin D which was slightly low. (she prescribed me some vitamin D which I have now been taking)

 

From here she suggested that because of my profession (I am a wedding photographer) that could explain some of the arthritic like pain my my joints. She prescribed me Mobic to try for two weeks. Then she wanted to see me again to hear if it helped. 

 

Well, here we are…two weeks later and the Mobic didn’t help one bit. Still the same pains as before I was taking it. If anything the pain has radiated around to my ankles more. (I should note also that when I went in and she prescribed Mobic I also presented with a couple new ailments. My ears were turning beat red and burning like they were on fire…several times a day….everyday for weeks. AND both forearms had a new extreme pressure feeling in them all the way to my fingertips. However, in the past two weeks both of those things have stopped)

 

So today I came armed with a lot of information I found online. Some articles, but a lot  from people writing on forums complaining of severe joint pains and other issues several mths and even years after having been on SSRIs. 

 

On such article mentioned “Protracted Withdrawl Syndrome” and stated that you can have an adverse reaction (by taking even just ONE pill) and OR this syndrome can happen when you have been on SSRIs for a long period of time. It states:

 

“Some people may experience an adverse reaction to the drug after taking it for as short as a few weeks or days. Sometimes even in a single dose of the drug may be enough.. The symptoms resemble those of the protracted withdrawal syndrome. It may take up to 24-36 months to recover from the adverse reaction.”

 

“Reducing the dose of antidepressants after years of taking them (by either slowly weaning off them or stopping them abruptly) may throw the body into a state of severe neurological and hormonal dysregulation, the symptoms of which, both physical and psychological, can persist for months or even years. Due to the severity of the symptoms, performing the simplest of life tasks becomes almost impossible for those suffering from withdrawal syndrome.”

 

“The functioning of both the sympathetic and parasympathetic systems is severely comprised as the bodes chemistry (especially the production of serotonin, adrenalin, cortisol and dopamine) is thrown off balance. The autonomic nervous system effectively develops a case of dysautonomia-malfuncion of the autonomic nervous system.”

 

So, my Dr looked over all the information I brought and also asked me how the Mobic worked. I told her it didn’t seem to help me at all! I asked her what this meant, what was wrong with me!!!!???? She flat out looked at me and said that she has practiced for 11 years and in that time she has never seen this before or heard of it. She said that we ruled out a lot of things with the blood tests. Now with the Mobic having not worked it shows that the pain isn’t inflammatory. That leaves…nerve pain. 

 

She offered up a few different options, one being to try small amounts of Tylenol on really bad days and see if that helps to taking a drug called Neurontin. (However, she said it does have side effects so Im not wanting to try it) She also offered that in similar cases where people are having a hard time withdrawing that the Dr. puts the patient back on an antidepressant to wean them down slowly again. She also offered Buspar for my anxiety as I am 100% not willing to go back on an SSRI. 

 

I am terrified. Im exhausted. Im in severe pain. My husband has been an absolute angel but its wearing on my marriage. We are at our whits end. We don’t know what to do, where to turn too. Its difficult for me to function because the anxiety disorder is so bad but the pain on top of it is just unreal. Im depressed and I think dying would be the next best option. (no Im not thinking of killing myself)

 

I wrote this lengthy story to ask for help from anyone out there who might know something about this. Anyone who has had a similar experience and anyone who can offer help or insight! It is my hope that this will get around enough that SOMEONE out there, possibly even a Dr might see it and be able to help me!! 

[bubble]

Hello Mblair and welcome to SA!

 

I'm sorry that you are suffering so much. You're right, it's quite a lot of text but I have read it and will share with you how I see your situation and also ask for some more details which will be important for us to try and give you some suggestions. I'm not a doctor and nobody on this forum is. We just have years of experience struggling with these drugs, have met a lot of people like us here and followed their stories and the founder of this forum spent around 10 years researching pretty much everything there is regarding discontinuation of ADs and many other things.

 

We are here because our doctors are not aware of issues surrounding the use of ADs and mostly operate under a very false assumptions that since they are unlike benzos, not addictive, we can stop taking them just like that. When we start feeling worse than ever before they conclude our "illness" is back and we need more/other meds. 

 

In your situation my guess would be that, although Celexa stopped "working" for you, stopping it abruptly after 7 years of use caused withdrawal which continued despite taking the other medication. It's very likely that Vibryd made things worse and caused an adverse reaction in a nervous system which was already severely compromised by the drug which had become a part of its structure being removed. But I wouldn't say Vibryd is the only culprit in this story. 

 

Despite many details you added what is key here is what dose of Celexa you were taking, when did you stop taking (try to be as precise as you can, you don't have to write the exact date since it seems to be quite some time ago), write the dose of dose and timeframes of your experience with Vibryd. Please add this information as well as mention of your previous drugs in your signature as described here: http://survivingantidepressants.org/index.php?/topic/893-please-put-your-withdrawal-history-in-your-signature/

 

(You can check how me or other people here did it. In that way every time you post we will be able to see what has been happening and when.)

 

I would say that you are still in acute withdrawal but when we get the time frames, we will be able to say more. I had an idea that reinstating a small/tiny amount of Celexa might relieve your suffering but I will see whether that would make sense when we get a fuller picture with dates and dosages. 

 

At this point I'll just add one more thing which stuck with me after reading your story: I've also been suffering with severe anxiety sometimes amounting to agorophobia. But my first method of treating this was talk therapy which helped me immensely. Drugs came later and they never really helped me except throwing me in some awful mess. You don't mention other ways of trying to deal with your condition apart from medication... This can wait now but I couldn't help mentioning it.

 

You will find a lot of very valuable information similar to what you quoted above, friendly support and advice on how to deal with the situation you are in now. We just need the information I indicted above. 

 

Once again welcome.

 

Bubble

[mblair]

Hello Bubble and thank you for your response!! I have included the information you asked into my signature : )

[Altostrata]

Welcome, mb.

 

As bubble said, it sounds like you have had severe withdrawal syndrome since going off Celexa, and the Viibryd added its mite of adverse reactions.

 

When your nervous system is destabilized by withdrawal syndrome, addition of other drugs, even antiibiotics, can cause unusual and unpleasant reactions. Please add drugs or even supplements very cautiously; avoid drugs if possible.

 

Mysterious pain syndromes can be part of withdrawal syndrome. See these topics: http://survivingantidepressants.org/index.php?/topic/603-what-is-withdrawal-syndrome/

 

It's very typical that all your tests came back normal -- it's important to keep vitamin D up, make sure to take vitamin D3 and get plenty of sun.

 

It's not unusual that your doctor hasn't heard of antidepressant withdrawal syndrome. Most PCPs and many psychiatrists are ignorant of it, although it's been known for decades.

 

Sometimes reinstatement of a very small amount of the original drug, such as 2mg Celexa in your case, can reduce withdrawal symptoms, see http://survivingantidepressants.org/index.php?/topic/3079-about-reinstating-and-stabilizing-to-stop-withdrawal-symptoms/

 

In addition, acupuncture, chiropractic, and massage may help the parts that are hurting.

 

(Is your screen name your real name? If so, you may wish to change it to protect your privacy. Contact me if you want to do this.)