Newly Diagnosed with FND. Question

[sherwoodpg]

Hello-

I (42yrs old) was officially diagnosed with FND this past week, although in fairness I believed this was the cause for quite some time. I even had a neck surgery thinking that was the cause...ugh. As many here, its been a whirl wind 2 years with every known neurological symptom coming and going....foot burn, weak right leg, sleep apnea, muscle jerks, arm tremors, burning hands, IBS, tinnitus, hyperacusis, hypnogogic hallucinations, brain fog, ....it's as if I'm going to get a taste of everything. Now, thankfully, most symptoms don't stick around very long...they come and go, usually lasting 7-10 days in duration.

I am in an area (Boston) that is both supportive and knowledgeable on the condition. I have been referred to the FND specialty clinic at Brigham or MGH. In the meantime, my doctor asked me to switch from gabapentin to Nortriptaline. He stated it was far more effective for the neuropathy caused by FND than the gabapentin. I was in agreement, but when I did a little research, I realized it was an antidepressant. I'd rather not. go down that road right now if I don't have to...and If I did, I would probably feel better about a newer, better-tolerated SSRI. Does anyone have any experience with Nortriptaline? Has anyone found that anti depressants have helped manage their symptoms?

Thanks-

[Stone86]

I work with both these meds in my profession with my clients and I also took gabapentin myself for nerve pain, which personally didn’t work for me. Sadly.

From my experience gabapentin tends to have more side effects compared to Nortriptyline. I’d also say I’ve seen more success with gabapentin for nerve pain compared to Nortriptyline.

With that said, if you aren’t having any bad side effects with the gabapentin, I’d stay on the gabapentin. Gabapentin withdrawls can suck, especially if you have been on them for a long time. Why put yourself through a possible horrible withdrawal if ya don’t have too, you already are suffering enough with your symptoms!

If you feel “comfortable” on the gabapentin, stay on it and advocate for yourself to stay on it to your doctor. I’ve found that doctors are trying to switch peoples meds from gabapentin solely because the med does have a history of being an abused and dependent substance. (Nothing to do with actual patients symptoms or trying to help them, despite what they may say sometimes) But if this med works for you, and you don’t abuse it, don’t allow the negative rhetoric by the medical community to force ya to change your meds. Just because some people suck, doesn’t mean that you shouldn’t be allowed to remain on a med that works for you!

[Misstea]

I have never taken that medication. I likely wouldn't either. Ive taken about 17 different medicines to treat bipolar disorder. None of them worked and only one psychiatrist stated I might have another disorder (the one that stopped prescribing me those meds). Looking back, a few of those medicines are the types I would think would contribute to FND symptoms.

[coffee_luvvie]

Hi,I found that all the symptoms I had in 2013 (difficulty walking, talking, brain fog/ word finding difficulty, weakness in left leg, incontinence, limb jerks/uncontrollable movements) were actually side affects of Gabapentin and all stopped when I stopped taking it. I was prescribed it for sciatica. I have been taking Pregabalin for a few years without most of those side affects. Hope you get some answers and freedom from your symptoms.

Jx

[Stone86 in reply to coffee_luvvie]

Such a great response! Extra pyramidal symptoms, EPS, are super common with these types of meds. For sure if any new weird symptoms that were classified as “FND” started while on the Gabapentin, there is a super good chance that it could be a response from the med and not an actual symptom. —-I’m so happy that you got off the Gabapentin Coffee_luvie and we’re able to find Lyrica which works for you! That’s some awesome self advocacy right there! ♥️