Author Topic: Hemifacial Spasms beginning 6 months Post CK in Jan 2022  (Read 608 times)

Dlip246

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Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« on: September 14, 2022, 11:00:12 am »
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....
« Last Edit: September 20, 2022, 06:31:12 am by Dlip246 »
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

robinb

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #1 on: September 18, 2022, 08:43:18 am »
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
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

Dlip246

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #2 on: September 18, 2022, 12:42:09 pm »
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!
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

Dlip246

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #3 on: September 20, 2022, 06:18:56 am »
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). 
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

gbly

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #4 on: September 20, 2022, 12:57:29 pm »
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

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #5 on: September 23, 2022, 07:03:00 am »
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. 
« Last Edit: September 30, 2022, 07:33:45 am by Dlip246 »
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

donjehle

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #6 on: September 24, 2022, 06:55:43 pm »
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
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

notaclone13

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #7 on: October 01, 2022, 03:36:47 pm »
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

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #8 on: October 02, 2022, 08:38:42 am »
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
« Last Edit: November 02, 2022, 10:20:25 am by Dlip246 »
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

Dlip246

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #9 on: November 02, 2022, 11:33:09 am »
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.
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

donjehle

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #10 on: November 05, 2022, 12:56:32 pm »
Thank you for the update, Dlip246.  It is very helpful to see what is working for you and what is not.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

notaclone13

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #11 on: November 05, 2022, 02:47:18 pm »
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

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Re: Hemifacial Spasms beginning 6 months Post CK in Jan 2022
« Reply #12 on: November 21, 2022, 05:29:38 pm »
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!
1.4 x .83 x 6 cm (14 x 8.3 x 6 mm).  watched slowly grow for 2 years then CK January 2022.  3 months post CK hazy head, 6 months post CK now having hemifacial spams same side.

 


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