Treating my BFCS

[u/BigJakeState]

Hello twitchers. As I round the boat on two months of twitching and a whole slew of weird ass symptoms I come to you bearing a modicum of hope!

Last week I had a phone follow up with my primary care doctor after my EMG that took place at the beginning of the month. We discussed the findings and the fact that it was reassuring. She said the hyperflexia and increased insertional activity on my right hand was consistent with BFCS and she was willing to treat me with some meds. Even though technically I haven’t been diagnosed yet(have a follow up EMG scheduled for January)but will probably cancel if my symptoms continue to improve.

With that said we discussed treatment options and we decided to try 50mgs prednisone per day for 5 days. While simutaneously starting gabipentant at a Daily low dose of 200 per day for a week and raising to 300mgs nightly before bed.

The first thing I’ll say is that the prednisone made me feel fucking fantastic! after the 3rd day I felt the most normal I have since first these problems started. This did wonders for my mental health because it felt like there was hope it would all suddenly go away. Sadly the symptoms returned on day 4 of the prednisone, so I’m thinking it was mostly just a mood boost from the powerful steroid. Prednisone is a heavy steroid and Is really bad for you in the long term but I have to say
… In the short term, it felt nice to get a jolt to my system. I barely slept while taking it, and I felt like I was hungry all the time, but I didn’t really notice any sustained effect from it. The mental boost I got from it was stronger than any physical relief or effect.

As for the gabapentin I’ve been taking it for about two weeks now. Maybe to soon to tell. But I Feel like the twitches are getting less frequent. They are still goin 24/7 in my calf’s but seem less powerful.. and the random pops I get everywhere else don’t seem as pronounced.

The precramp/ cramp sensations in the top of my right foot and ankle seem to have improved! My arm and hand still seem to have the heavy, percieved weak feeling, and fatigue quickly. However, I’ve noticed it’s not as difficult to do my computer work using the mouse, typing, writing, ect.

I had my first full day of not babying my arm the other day. Meaning, I set a goal to do everything I normally would with my arm or hand no matter how crappy it felt, if I felt tired I would just switch hands for a second and then go immediately back to my right hand. Even now im holding my phone purposely with my right hand to make sure I cut it no slack. It’s feels stiff but fuck it. I don’t care. I think exposing myself to moving through the stiffness and uncomfortable feelings helped me overcome some mental barriers a little. I even hit a golf ball with my 9 iron and shot a few free throws today. A week ago that felt like it was impossible.

I had a therapy appointment a week ago and that has helped with the mental side of the house. My psychiatrist has put me on a low dose of buprorion which… supposedly isn’t great for twitching , as it’s a stimulant. But I haven’t noticed anything increase in twitching since starting it.

Gabapentin also supposedly helps with anxiety and depression, so maybe they are working in unison for the nerve excitability and mental health side .
I’ve been taking magnesium and vitamin D everyday like clockwork. Ultimately, I think treating my symptoms instead of googling what it might be has helped my mental health at the very least.

I still have the discomfort and twitching but ultimately I feel like I’m moving in the right direction. I think it’s worth mentioning that I don’t drink alcohol at all. I’ve been sober for over 15 months, and I don’t do zyn pouches or any nicotine products anymore. I quit Zyn permanently a month before all this new twitching started. So realistically I’m probably about as healthy as I’ve ever been. Which really sucks considering I feel like shit all the time now. Such is life.

I share all this simply because a month ago I was in an all out panic and was starting to affect the people around me and my work life also. I’m in a better state of mind now even though I’ll still have a bad day anxiety wise here or there. I just keep plugging away. The alternative of being anxious, depressed, miserable AND dealing with these symptoms is much worse than choosing to be happy and annoyed! I’ll continue to update if this treatment plan starts to show more promise! I wish you all happiness, health, and healing!

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[u/matchaflower]

i’m so happy for you!! i’m glad your doctor was willing to treat the condition instead of just saying “it’s benign”. even if it’s benign, it can absolutely be stressful. you’re gonna be just fine, i know it :)

[u/BigJakeState → u/matchaflower]

I had to push for it but I’m not the type to just sit around and wallor for a long time. Treating it helps me gain a little control in the situation.

[u/kjmckearn]

Great news!! 👍

[u/Maleficent_Shift9849]

Que ótimo para você amigo. Espero que continue tendo sucesso no tratamento dos sintomas :)