Hemifacial Spasms beginning 6 months Post CK in Jan 2022

[Dlip246]

Hello, I am new to the forum but have been reading the discussion posts and thank everyone for their insights. Thank you all for sharing!

In 2020 I was diagnosed with a small left side AN which we did a "watch and see."  Eventually it slowly grew to 1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  So, we decided on CK which I did in January 2022.  3 -20-minute sessions.  No immediate side effects.  But then about 3 months later started feeling a little lightheaded at times (a "1" on a scale from 1-10.).  I went to the ENT/Neuro who was my doc, and he had no idea why, so he gave me a small rx for diazepam which I barely took.  Then, with no other side effects for the next 3 months, in July (about 6-7 months post CK), I had my first left side hemifacial spasm which lasted minutes.  I went immediately to my same ENT/Neuro who did the CK and he had "no idea" what would cause that because he never heard of these symptoms so long after CK treatment.  I had a previous history of Bell's Palsy, so he treated me with Valtrex and Prednisone low dose.  I also coincidentally got Covid for the first time that same day.  Needless to say, no relief.  I was worried because he had said he never heard of such a delay in symptoms before.  I thought I had nerve damage now!

I am now 10 weeks after that first spasm.  At first, they were occurring just 1-4/day.  Now I am at 8-12 times/day.  They vary in strength and duration.  More so in the mornings when my face isn't "warmed up". They can start from a yawn or a simple laugh.  When it happens, I can feel a lot of pressure buildup in my head on the side of the AN. And tinnitus gets very loud.

I have since switched doctors. We did an MRI a few weeks ago which the Radiologist says show the tumor a little smaller and a bit blacker.  But the doctor didn't read the report but instead read the films and said he sees the tumor swollen and believes it is touching the nerve which is causing the spasms. He told me not to think outside the box as he is sure what is causing the spasms.  So now I am on my second week of Dexamethasone 2mg 3/day which hasn't seemed to help at all yet (still same number of spasms (10-12).  He wants me on it for 30 days. 

Questions for anyone who has had similar experience:  Did the steroids eventually help (side effects of no sleep aren't wonderful!)?  Anything else I can do to reduce the swelling of the tumor as a result of the radiation?  Any other Rx to suggest decreasing the frequency of the spasms?  Did your spasms eventually go away and any suggestion on a time frame? 

Thank you for reading and responding!  I will keep this post update for all to be able to review as the journey continues....

[robinb]

Hi-

Not sure if you're the same person that also reached out to me directly...but just in case not, responding here,

I had similar experience with facial spasms post GK. They seemed to be brought on when brushing teeth, turning over, shower water hitting face, stress and cardio....my doc tried Valium, Prednisone and eventually Gabapentin, which is an anti seizure med used to treat epilepsy. That eventually helped.

My doc said they would be temporary and they were, after several months gone, never returned. And that was almost 10 years ago. You can read more details in my thread.

Hang in there,

Robin

[Dlip246]

Hi Robin!  Thank you for your response, it means the world to me to hear from someone who has gone through this.  I intend on keeping my journey updated as well to help guide others.

I will be reaching out to my doctor about getting on Gabapentin.  I am at 10+ spasms a day with no relief in sight so hopefully he will be receptive, and it will help.  Right now, I am on Dexamethasone (2mg 3x/day) which doesn't seem to be helping but maybe it is? I am taking Diazepam 2 mg 3/day to take the pressure off but again, not sure if it is helping.  I am on every supplement, CBD, health food known to man hoping that can give me an edge as well.

Keep fingers crossed on me getting the rx for the Gabapentin and hoping it works....

Thank you again for your log of your journey!

[Dlip246]

Update:  Started Gabapentin 300mg 3x/day today (still taking the Dexamethasone going on my 20th day).  Fingers crossed it lessens the spasms that come now randomly (with or without activity). 

[gbly]

Dlip246,
Sorry to hear you are having the spasms.  I will be curious of the results.  I did the dex but my problem was synkinesis on the radiated side.  Sucks but it is the new face :0.  basically keep positive and maybe add an aspirin into your regiment.  there is a lot of write ups on aspirin for multiple reasons.
Good luck and interested to see how it goes.
v/r GB

[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.

[donjehle]

Thank you for the update, Dlip246.  It is very helpful to see what is working for you and what is not.

[notaclone13]

Just wondering how much gabapentin you take daily and when you take it. I got up to 600 mg per day, 2 100 mg capsules in the morning, 2 in the afternoon and 2 at night. I stopped taking it because I was still having spasms and the side effects of the gabapentin hit me hard. Made my feelings of imbalance  worse and felt sleepy and slow. I may give it another try since the BoTox doesn’t help much if at all.

[Dlip246]

Hi Notaclone13, 

I am sorry I just saw this and did not get a notification.  I was taking 300MG 3/day (every 8 hours).  I suppose I was lucky in that I didn't feel side effects from it.  I would have good days (0 events), then some worse days (last week I had multiple days of 10) and everything in between.  So, I am not sure how well it has worked in the 2 months I have been on it. I feel like it did help and wished it bought me enough time for the tumor and swelling to shrink, but it didn't.   So today I did my first Botox injection.  One shot next to the eye.  Again, I have high hopes this works.  Plan is to get off of the Gabapentin now to see if the Botox takes effect. 

I am sorry to hear you haven't found the relief you need yet.  I understand completely what you are going through. 

It is very frustrating since very few people seem to be suffering as we are, and the doctors (and I have consulted with MANY) just seem to say, don't worry, it will go away with time. 

One thing for sure is that the steroids were killing me and did nothing to help.  Maybe a higher dose of the Gaba? 

Please keep us updated.  Wishing you a very speedy turn around on your recovery!

[DodgeAU]

Hi Dlip

I had my GK on March 2022 and after exactly 6 months out the hemifacial spasm started on the AN side. I get 1 to 3 times a day and lasts 5-20 seconds.

I did not take any medication as I am able to tolerate the symptoms. It is normally triggered after yawning, sneezing, facial wash, etc.. usually in the morning.

During spasm, my upper and lower eyelids are twitching, stabbing ear pain, stiff nerve on the neck, lip feels like being pulled downward. 

There are days that are mild and some days are more intense. I'm on 9 month post GK now and hoping that this spasm will calm down soon.

I found this older thread regarding hemifacial spasm very useful. Hemifacial spasm shall go away over time.

https://www.anausa.org/smf/index.php?topic=10941.0

Happy new year !

[Dlip246]

Hello all and Happy New Year,

@DodgeAU thank you for your post. In my last post I was getting off of all the meds and trying Botox.  First, I did the one injection next to the eye but saw little results (only made the spasm in that direct area not as pronounced but rest of the face still spasm strong).  So, I did yet another injection (2 weeks later) in the lower eye lid and unfortunately saw little/no results.  I suppose I could have done injections at all of the big trigger points but that would have effectively made the entire side of my face barely movable at all times, which to me would have been worse than the discomfort and embarrassment of the spasms which last only 30 seconds to a minute.  So as of today, almost a year post-CK and 6-months post first hemifacial spasm, I am still getting the spasms (now 5-15 tomes/day). 

I am holding onto the hope that they will go away with time as seems to be the general feeling from people who have experienced them.  Since I have had them, I keep a daily chart of what I am doing, time of day, etc when they occur to try to see a pattern and shape my daily activity around that.  The results are in:  No pattern!  I can be watching TV, laughing, talking, getting worked up in a conversation, working out, eating....no rhyme or reason.  And sometimes they occur during those activities, sometimes not. The only constant is I can count on one or two in the morning when brushing my teeth and showering. 

Side note: It is shocking how little most ENT's know about this side effect of the radiation.  They have all heard of the AN and the types of treatment, but I'd say less than half have ever even heard of facial spasms as a result (and I have seen a LOT of ENT's about this). 

Anyway, here's to the New Year and good things to those of us who suffer through this...!  Hope everyone gets well soon!