Hemifacial Spasms beginning 6 months Post CK in Jan 2022

[donjehle]

Thanks again for the update, Dlip246.  We do appreciate you sharing what does/doesn't work for you!

[DodgeAU]

Hi Dlip246, my Oncologist told me to take Dexamethasone last month and I did for 2 weeks. However, the side effects on me was increased spasms from 5 times into 30 times a day, very difficult to sleep at night as well as tummy feeling bloated   
 
But after 2 weeks of taking it, the spasm has started to calm down to once a day with noticeably reduced intensity. Then this week I have no spasms. Hoping for the best fingers crossed the inflammation is starting to heal (and hopefully shrinking).

This AN keeps surprising me all the time
 

[Dlip246]

Hello @DodgeAU and all that follow this thread!  Thank you for the update.  I hope you continue with no more spasms! That would be amazing. Please keep us updated as to your progress!  As for me...no change.  I am 13 months post CK and 7 months since the spasms (contractions?) started with no difference.  The Botox (I did 2 shots) did absolutely nothing!  In December my "events" went up to as many as 10-20/day.  So now I am back on Gabapentin (300mg 3x day) which I think has helped.  I am back down to 1-6 day.  What a rollercoaster.  I can't seem to find what works.  I am glad the Dex worked for you (and it is worth the side effects).  As anyone who reads this thread knows, in addition to medicine I have tried just about very holistic approach.  I now do cryotherapy as much as I can, which, believe it or not, seems to work!  I don't usually have any events afterwards. Maybe I am cooling the nerves down, who knows?!!  Please keep updating this thread as we all are hoping the best for you and your journey can hopefully help all of us come and understand this better!

[mwatto]

Hi Dlip I use cold packs that side which helps stabbing pain in ear. I also found 1 mg valium helped quite a bit. Lately I am having success with a combination of: PEA 300mg twice a day (will increase from next week) CBD THC tincture- full spectrum. Started on Honopure past two days and no nerve pain -take with food if you use. Also melatonin compinded with the CBD at night. Functional doctor has recommended I add on 3 mg LDN compounded with PEA if the nerve pain comes back.

[Dlip246]

Hi mwatto - thank you for your post.  Are you having the spasms/contractions as well or just pain?  I am glad you are finding solutions that hopefully will work!

[mwatto]

No spasms. I have had stabbing ear pain past 4 years when I lie down - am woken in night. I had some hypnic jerking after CK though and low dose valium (a muscle relaxant) helped me a lot. I have no pain in day so I pretty much know my issue is vascular - to do with blood flow in night. During the day I am just fine. at one stage I had eyelid twitching but magnesium sortd that out.

[Dlip246]

Hi All,

I just wanted to write a little update.  That said, I wish I had something to update you with!  It's been over 9 months since the spasm/contractions began and no relief in sight.  I have tried just about everything and nothing seems to work.  I go in swings from 1-3/day to up to 15-20/day.  There is no rhyme nor reason for when or why they happen.  Doctors have no idea what is causing it or how to help...and believe me I have seen a lot of doctors! If anything changes or I learn anything new I will post.  Best to all!

[Dlip246]

Hello to all:

I haven't been checking the forum much lately as I have been feeling a little defeated with the hemifacial spasms (really should be called contractions) that are still ongoing.  It has been about 18 months since my CK and about a year now since the day the spasms/contractions started.  As anyone who has read my thread knows I have tried just about everything and have seen about a half dozen doctors.  It seems that other than this forum there is almost no literature out there and the doctors seem to know very little (or have very little experience) with this side effect.  I did start taking 5mg THC gummies to help me sleep through the night which has seemed to help lesson the episodes the next day.  I have no side effects from that low dose and don't recommend it to anyone that shouldn't use THC, but I do recommend doing whatever is needed to get good sleep!  I will keep this group updated with any progress (hopefully)!

Thanks!

[donjehle]

Thank you, Dlip246, for your update, even though it is not good news.  Posting both good results and bad results can be helpful to everyone the forums who are considering a treatment option.  They need to know both sides while making their decisions.

Is there anything you would have done differently with what you know now?

Please continue to update us on how it continues to go for you.  I'm still hopeful that someone will find something that will help you.  I think you are correct -- most specialists seem to know very little about that side-effect.

Best wishes and let's keep the discussion going in case anyone knows a possible answer.
Don

[DodgeAU]

Hi Dlip246, hope yours will get better soon and stay positive 

My hemifacial spasms has totally disappeared 9 months after showing up.. Each person is different I read someone had it for over a year. My doctor told me it could last up to 18 months for some people.

[mwatto]

I read this today - so it will hopefully resolve- in your case I think swelling which is normal post CK caused some compression of facial nerve

https://www.aaroncohen-gadol.com/en/patients/hemifacial-spasm/treatment/radiation-therapy

[Dlip246]

Hello to all, and thank you for the responses and communication, and the positive thoughts! 

I am 14 months post CK and the spasms/contractions are still occurring.  But...they have seemed to lesson in frequency the past month or two, so I am hoping I am on a good track! Fingers crossed.

I had another MRI and my AN has not increased in size since the radiation and, in fact, is getting necrotic in the middle, so that's good news! 

I have pretty much settled in and decided that there is nothing to do about this other than wait and hope it goes away as it has with so many others.  I guess the discouraging part is that I am probably the longest affected with this on the forum.

I promise I will keep this forum updated with my condition with the intention that others can learn from my experience. 

Best to all!

[mwatto]

Hi I have noticed that magnesium has stopped twitching under eye which had started up...could just be dry eye. Also taking full spectrum CBD for better sleep with melatonin.  Unsure whats causing the stabbing eye/ear pain during night-saw opthalmologist yesterday who affirmed my eyes healthy suggested its maybe facial nerve irritated by pressure when I lie on the AN side. Next year MRI I will ask if any adhesions on facial nerev - this recent MRI they said nothing going on with trigeminal.

[Dlip246]

The saga continues....

So about a month ago I decided to start another round of steroids.  This time we went strong, large dosage (stronger than the other times).  The good news is that it seemed to have lessened the frequency.  During the treatment I did not have a lot of "events."  But since it finished, they came back to some degree.  Still happens, but somewhat less. Maybe I will go a day or two without, but then the next day have 2.  I am also still being very careful with my physical activities and social interactions so as not to "trigger" them.  The downside was the steroids!  Wow!  they can really kick some butt! 

I recently did an MRI with a special focus on the facial nerve so my neurologist can try and see what may be going on.  I am meeting with the doctor next week to go over the results.  The usual MRI's (with and without contrast) just focus on the AN and not the nerve.  So hopefully this will educate us.  I will keep everyone posted!

 

[Dlip246]

Hi everyone - as promised just checking in to update anyone who is following this thread and may be going through what I am going through.

I am over 2 years post CK and about 22 months since my first facial contraction/spasm/cramping - if you go back to my prior threads, you can see all the treatments I have tried. Well, sad to report, I am still going through it.  Thankfully they have become "weaker."  By this I mean shorter in duration (they used to last up to 2 minutes and now they are under a minute) and less intense (I used to not even be able to keep my eye open or my mouth from contracting).  Now I can "fight" through them a bit.  So, I guess this is good news?  They still occur almost every day - same triggers - exercise, sneezing, yawning, social interactions, etc., etc...).  My brain MRI that focused on the nerve showed....nothing. So no help there.  MRI's don't really show the nerve and nothing stood out.  I have seen literally over 10 different specialists and have had 6 MRIs since the CK and not one doctor has ever even heard of or has seen my symptoms. 

If anyone wants to chat or discuss what they are going through, please reach out to me (I have been through a lot and have tried everything so I may be of some help)!