Post-Treatment > Facial Issues
Hemifacial Spasms beginning 6 months Post CK in Jan 2022
Dlip246:
Update - today starts my 4th full day of the Gabapentin (I am still on my Dexamethasone for 21 days now, not sure it's working but I'll run the course with it). Since I've started the Gabapentin, my events went from about 10-18/day to now down to 5 and mostly all before noon! So that's great news I hope! I am being cautious in my activities as getting my blood pressure up seems to activate the spasms. I'm also taking every "anti-inflammatory" and nerve strengthener supplement out there: (Turmeric, ginger, fish oil, resveratrol, Spirulina, vitamins with extra B's and C's and, I have been taking CBD (just started 25mg in the morning, people say it is an anti-inflammatory and can help relax the nerves as well). I also use a CBD topical over the nerve area on my face.
Let's hope the Gabapentin, plus time reduces the frequency even more, once it is really in my system.
I will keep this updated.
donjehle:
Your continued updates, Dlip246, are very helpful. Thank you for sharing them.
I'm not a doctor, but I understand that CK can cause swelling of the tumor for a while until it eventually shrinks a bit. So, I'm hoping this is a temporary situation for you. The swelling of the tumor is supposed to be a good sign, as I understand it, that the CK is working. But if the swelling of the tumor touches a nerve, it can cause issues for a while.
Again, thanks for sharing your experience. It is very invaluable!
Best wishes on your continued recovery!
Don
notaclone13:
Hi Dlip, you are not alone. I had 3 sessions of radiation via Varian Edge in late April-early May on a 1.7 cm AN. I had intended to get radiation a year earlier, when the AN was only 1.3 cm, but the Covid pandemic reared it’s ugly head and delayed my plans. I had my first hemifacial spasm in late December 2021, approximately 8 month post-treatment. I was in the shower and felt my face contort but had no idea what was occurring. At first they occurred only once or twice a day. Now I may have as many as 20 or 30 a day. Gabapentin didn’t help, only made me feel knocked out and ruined what little balance I still have. Ive had 2 MRIs since the spasms began, the AN is now 2.0 cm with darkening in the middle. The neurosurgeon seems to think it’s post-radiation swelling and he prescribed a dose pack of methyl prednisone, which did eliminate the problem for about a week. But, steroids come with their own set of problems and are not a permanent solution. I had a BoTox treatment 3 weeks ago, but it hasn’t helped much if at all. Needless to say after 10 months of spasms with no end in sight I’m discouraged and worried that I’ll end up needing surgery in the end, something I definitely don’t want.
Dlip246:
Hi, Notaclone13,
Thank you for sharing. You are not alone in this either.! It was a shock to get these symptoms so long after treatment, but yet here we are. The goal is that the swelling from the tumor begins to wane sooner rather than later. I've read all of the stories here and a good amount of them end with the horrible spasm going away. How long, I wish I knew! For me it has been 90 days since they started out of nowhere. In the beginning it was a few (1-3) a day, then peaked about a month ago at well over 12-15. But then I went on the Gabapentin. I have basically been on steroids for 6 weeks and am now tapering off (I don't believe they helped, as I would have felt a big difference in the beginning). I am on Gabapentin (for about 13 days now). The frequency of the spasms has lessened quite a bit. I have days now with 8 but most with less than 5 now, a couple with only 1! Not sure if it is the meds or maybe I'm getting over the hump? I obviously can activate the spasm with activity or vigorous conversation. But like you they can come on even while doing nothing. I haven't had any noticeable side effects from the Gabapentin, thankfully. For me, i am hoping to have a lot of good days in a row and get myself off of all the meds. Oh, when I feel the pressure in my head build up (which coincides with much louder tints and then an inevitable spasm) I may take a Diazepam. Like I said, I can't wait to get off the meds! Lastly, I am taking a ton of vitamins and supplements for anti-inflammatory and nerve strengthening relief. I can send you my list if you want.
Can you share the Botox experience? obviously for someone like me this is the next logical step if I can't get over them. How has it affected you? Did the ENT do it? Does it take time?
Don't be discouraged! Things could be a lot worse. your solution will come!
D
Dlip246:
Update: It has been 4 months since my first facial spasm (6 months post CK). I am now completely off of the Dexamethasone. I can't say if it helped or not (I was on it for about a month), but it did kick my a** with the side effects.
I am about a month and a half in on my Gabapentin. It took about a week to start seeing any results, but now I have seen a big decrease in the number of spasms I am having - now usually 1-2 per day, but some days none at all...and a few days with more than I would like (maybe 5-6). But way better than 10+/day. I am not sure of it is the Gabapentin helping me or a coincidence in timing, but if I had to guess I think it is the Gabapentin. None of the doctors I have consulted with (and I have had many consultations from many different doctors) thought Gabapentin would work, but it seems to have.
I have an MRI set for January to check on the tumor.
In the meantime, because I am still having the spasms (even just a few per day) I am considering Botox. I will keep this updated for all who it can help.
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