Severe pain after SSRI use! Please Read!!!
 

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:

**

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!!

Welcome to the NeuroTalk Support Groups.

Gosh, you've been having a time of it.

There's another post here somewhere from another member who experienced a reaction to Viibryd. Here's the thread from the PN Forum

Hi- New Member with some type of Neuropathy

Will post more later after I've reread your post again.

p.s. Have you had your B12 levels tested?

p.p.s. another thought. My daughter takes Propanolol (a beta blocker) for severe anxiety. She has breaks from it from time to time. Usually the two of us take natural remedies (I have anxiety as well) but when it gets really bad she has to resort back to the Propanolol. It's very helpful for her.

I'm sure other members here will respond with ideas for you as well.

So sorry you're dealing with this.

Thank you!!!! Nope, I dont believe they tested that?

Hi mblair, welcome.

Did any of these doctors suggest—or have you try—L-tryptophan (or 5-HTP) after discontinuing thge SSRI?

ssri discontinuation l-tryptophan

Doc

Look on your test results and see if the MCV value is high or out of the upper range. That would be a clue then to get the B12 tested.

When you take SSRI drugs for a long time, the cells stop making serotonin. This is because the serotonin you had is staying in the synapse (connection between neurons), and more is not needed.

When you discontinue there is a lag then for the cells to wake up and start making serotonin again. About 90% of all serotonin is in the body and only the rest in the brain. So the whole body suffers when the drug is stopped. For example, serotonin is a major factor in GI motility, and also found on blood platelets.
This is a complex explanation of what serotonin does in the body:
http://en.wikipedia.org/wiki/Serotonin
You can see that messing with it with drugs will totally upset your balance over time...and recovery of all the systems affected will be uncomfortable and perhaps protracted.

As people wean off, using the amino acid tryptophan can help with withdrawals since it is the precusor used to make new serotonin. You can also try 5-HTP which is also made into serotonin, and faster. Tryptophan has to be used away from protein containing foods for best results.
PharmaGaba is useful for anxiety but it works on GABA receptors and won't help with serotonin loss.

Low B12 leads to all sorts of nerve pains and symptoms. Your test should be at least 400pg/ml. If any lower than that (US lab ranges still go down below 400pg/ml) you need to supplement with activated B12 called methylcobalamin.(take on an empty stomach.
Here is our B12 thread:http://neurotalk.psychcentral.com/thread85103.html

B6 and magnesium also are involved in serotonin chemistry.
There is a nice lotion you can now get and rub directly into your feet once a day. Morton Epsom Lotion... available at WalMart, Walgreen's and online at Amazon. This is very helpful and inexpensive and easy.

The drugs you took are pretty sophisticated and will take some time to recover from. Using the correct supplements may shorten that period for you.

Welcome mblair. :Wave-Hello:

If youre taking Neurontin, ask your doctor about taking Omeprazole also, as Neurontin is extrememly harsh on the stomach. I wasnt advised of this, took them for seven months & ended up in hospital vomiting blood... I wouldnt want that to be added to your already extremely busy plate...

I hope you find your answers in the long term, & relief in the short...

Andy, if you took acid blocking drugs for months, you could be low in B12 and folate. Low B12 causes nerve damage.
Have you been tested for low B12?

Wow! You guys are awesome!!!! Your responses make me feel like you all really know what your talking about (and its a huge help to not get responses back like OMG thats crazy!!!?? Whats wrong with you!)

So looking back at the blood results I left off an entire page (Whoops!) I will type those out at the bottom. Not sure what any of it means. The MCV just says Result 90 reference interval 79-97

It is so wild you guys mention the 5-HTP because my husband and I just stumbled across that online last night and have been researching it. We are looking for something to help with my panic and anxiety disorder but dont want anything else to do with SSRIs. We have been reading some really fantastic stuff about it (and of course some scary stuff too but thats with anything) Im seriously excited about trying it!!! My Dr. only recommended the Neurontin IF I agree to take it but when she told me about all the side effects I said no. (Ive had all I can handle of side effects!) She NEVER mentioned any explanation for why this could be happening and the explanations with links above make PERFECT sense!! Why would a DR not know all of that!!?? I did ask her for a recommendation for something natural for my anxiety and she said L-theanine. Looking it up is when we found out about the 5-HTP. I am SO hopeful that it will be a life changer for me. I hear for some people it even helps with pain..

Okay so here are the rest of the things she tested for:

Glucose
BUN
Creatinine
eGFR
BUN/Creatinine Ratio (Was 26 and said HIGH)
Sodium
Potassium
Chloride
Carbon Dioxide
Calcium
Protein
Albumin
Globulin
A/G Ratio
Bilirubin
Alkaline Phosphatase
AST
ALF
TSH
Lyme Disease
RA

At the bottom it said

Vitamin D, 25-Hydroxy 22.6 LOW
Vitamin D deficiency has been detected.

I havent, but I am taking high dose B12 vitamins on docs orders, so maybe they did & didnt let me know... Most docs I have seen have been next to useless & I am only on the course I am now, after made a complaint. But I wont hijack this thread, & I will ask my doctor when I next see them about low B12 :-)

Oral B12 should be at least 1000mcg (1mg)...

Andy--what dose are you taking?

Im taking 3000mcg daily, but can up that... Docs were pretty ambiguous about them & it was a bit of an afterthought...

So Ive been ready up more on Serotonin and I am assuming that since ive been off for a couple mths that my levels are low? So Im looking up the effects of low serotonin and if it can cause nerve pain like Im experiencing and I cant find anything? :(

Okay, make sure you take that on an empty stomach. If food is present the absorption will be seriously impaired.

It is possible that the use of the SSRIs was masking the pain.
When you stopped, then the pain became more obvious. SSRIs are a treatment for neuropathy pain for some patients.

But your high MCV suggests you are borderline or getting low in B12. The red cells get larger as B12 goes down. Eventually with time a macrocytic anemia develops...but neuro symptoms often appear first.

The Viibyrd is just too new to blame yet. It can take years of use to link some postmarketing side effects of new drugs.

Im wondering (along with my husband and my Dr) if either:

A. The prolonged use of Celexa caused some sort of nerve damage.
B. The sudden stopping of Celexa caused some sort of reaction that is presenting as nerve damage
C. If the Viibryd alone caused this painful reaction and somehow damaged my nerves
D. The combo of coming off the celexa after that long and that fast..and then going on the viibryd made it even worse and now I have nerve damage

I feel like the timing of the onset of pain is just to much to be a coincidence? Meaning I cant believe I just had a nerve problem all along (or rather developed a problem while taking the Celexa) and that Im just now aware because Im no longer taking it?

I made up a sort of timeline thing to go in my signature but havent put it in there yet:

Started Celexa to treat panic/anxiety/agoraphobia around the beginning of 2008. Tapered only a few days starting April 30th 2014 (per Drs orders) and took my last pill May 4th 2014. (Was on Celexa roughly 6 years)

Started Viibryd 10mg May 5th 2014 and tapered up to 20mg, then 40mg around June 29th or so. Was on that dosage until July 13th when I was told to stop cold turkey by psychiatrist due to adverse reaction. (Was on Viibryd around 2 mths total)

Presently on NO medication

**Experiencing severe nerve/joint pain mainly in feet but also knees and a few other places since starting on the 40 mg dosage of Viibryd. No prior injuries or history of pain. (panic and agoraphobia have set back in since stopping but I expected that)

Viibryd is related chemically to trazadone...which has been in use for over 25yrs. There has not been a published link to trazadone and neuropathy.

Get that magnesium lotion...it works on the NMDA pain receptors and minimizes pain. It is very simple and very good. It only costs $5.95 a bottle which can last up to 3 months. It will provide magnesium as it is absorbed to some extent for systemic purposes... one of which is calming of anxiety.

You can also soak in epsom salts, but the lotion is much better IMO. I use it just about every day. Just apply about a quarter's diameter divided between your two feet, at night once a day.
Give it a week to start working. I can feel it though within an hour. Apply to the tops of your feet and ankles. Don't do the bottoms, as the skin is too thick there for good absorption.

The vitamin D deficiency, and masking by the SSRI, could account for some of it right there.

vitamin d deficiency foot pain

Sometimes doctors prescribe a megadose type of vitamin D. Before purchasing/taking, find out if it's D2 or D3. D2 is pretty worthless.

d2 vs. d3

Vitamin D and Peripheral Neuropathy:

You can get D3 OTC fairly inexpensively, which should do the job. I take 5000 IU/day.

Doc

Hi there, I'm new as well. I just wanted to let you know that Neurontin (gabepentin) has it's own little set of problems. While it does help me with neuropathic pain in the legs, it has worsened my balance problems (already pretty impaired) and ruined my short-term memory. For me, it was a trade off--I had to weigh the pain levels against the side effects and decide which I was willing to put up with. The same will be true of any drug you take, unfortunately.

I'm so sorry you are going through this! I'm so lucky that I have a very knowledgeable family doctor who can help mitigate the silliness that comes out of my treatment by the VA (when I can afford to go see him, that is!) I know my comment hasn't added anything new to the conversation, but just wanted to let you know, you are not alone. I've only been on this forum for a couple of weeks and already learned something new, so I'm thankful for all of you!
:grouphug: