Facial twitching problem, might be a Hemi-Facial Spasm

I have joined up with this group because it took me a VERY long time to get this problem answered. Naturally a doctor(s) (nephrologist with an infectious disease and neurologist in tow, in the hospital...oh, and I was in a teaching hospital...and I was saying I had Lyme and getting an incompetent differential diagnosis)...well they said the "facial droop" was not Bell's Palsy, even though that did end up in the chart later?????? They did no EMG. They said it was psychosomatic, and even sneaked in a psychologist who was a psychosomatic illness specialist...they didn't tell me! What???? The bad nephrologist pointed to his head and said, "Sometimes, these things can be all up here." I left with no diagnosis. This is my Organ Transplant Hospital

And just to make it prettier, I am an immuno-suppressed organ transplant patient, who has these doctors around to fix.....INFECTIONS!!!!

So back to the non-Palsy, Palsy. Almost three years into this, I went back to this same teaching hospital and got an EMG, because I wanted one. Everyone said, oh it is Palsey, just live with it, but it was twitching and getting BIGGER sometimes. Well those incompetent neurology test folks could not answer the question, of why my face wasn't doing what they expected during the EMG. Then after a long time, one of them stepped out, and brought in....and elderly woman. An old Neurologist.

She was tough. She squinted at me and held up a piece of paper across the right side of my face, with the edge of the paper running the mid-line of my face (meaning covering the right side of my face). Then she did the left side the same way. Then she said, "You are looking on the wrong side of her face".

She hooked up the electrodes to the right side of my face (the side the other doctors had not evaluated), and the machine screamed and the meter shot high on the machine. She simply said, "You have Hemi-Facial Spasm. This is not a droop, it is a spasm, most probably from your 7th ot 8th cranial nerve."

For all of you who have had this, and I know there are many (just look at Mandy in "Under Our Skin" and you will see her face and lips lift UP not DOWN. I have told my brilliant LLMD Superstar from NY who says he has seen many patients with this. And that research should be done.

And the cure.....BOTOX! Hey, if you have this, it can be fixed, though for only 3 to 4 months at a time. I got a reference through a great neurologist I know, and went to the best. I have my approval for insurance-covered Botox to see what happens....I will re-post on this. How many of you have had this?

Hope all is improving in LymeLand

So what causes the spasm?

So the question of what causes these spasms? What I was told by the elderly, semi-retired neurologist who diagnosed this, as well as by the Neurologist who is going to treat this spasm (meaning relax it with Botox) is this: that no one really knows why. Most surmise that something has caused some type of erosion or degradation of the 7th or 8th cranial nerve in the face. Somehow, this nerve interacts with an adjacent muscle to cause either Palsy (drooping) or PERHAPS this "spasm" as well.

No one has said why a spasm as opposed to a droop, though both seem to be caused by the same cranial nerve. The idiotic doctor, who originally called mine a "facial droop", but not palsy, was assisted by a Neurologist. They both need to go and droop! I have read NOTHING that says these facial spasms are caused by Lyme, but my spasm began the spring of 2013, when the Lyme symptoms really showed up.

Again, please watch segments of Mandy in the film, "Under Our Skin". You will see her upper lips curling upwards when she talks and laughs; her face seems tight or almost in a sneer. Compare her to when she is "cured", look at the follow-up movie. Quite and astonishing difference in her face. Do doctors know what they are talking about when it comes to Lyme...well, we already know how few have it together.

Hope this clarifies. Would love to see posts from folks with facial spasms who have been evaluated by a neurologist, and who got a diagnosis and hat that diagnosis was.

Hi I'm new on the board. I wanted to say I have Atypical Hemifacial Spasms that started last year or so ago along with debilitating depression and anxiety , fatigue, pain, etc. Now I'm experiencing pain in all my muscles , joints , nerves etc. Headaches. Vertigo can be severe sometimes. The bones in my shins hurt like HADES sometimes. THE BONE not like shin splints. Hot or Cold , never just right body temp. I was diagnosed with Spondylolisthesis on my L4 vertebrae and Piriformis sydrome. I have heart racing and blood pressure issues which I now think after reading may be POTS. Basically , I scored 129 and then some on Dr. Horowitz MSIDS quiz online. I've been tested for the HemiFacial spasms with just an MRI. They said it's non-specific meaning they can't see a cause (I though I might have MS due to some other odd muscle spasms I have all over at times). I'm also sensitive to meds so when I tried the baclofen , I had the rarest reaction of vaginal bleeding ( after menopause for FIVE years ! ) the second day ! I stopped that pronto. I do take sertriline for depression and now diazapam for the anxiety and spasms and a low dose High Blood Pressure med. All bandaids for all the odd symptoms. I could take other things I've been prescribed but I really DON'T want to be a walking medicine cabinet ! It took me YEARS to be convinced to take what I am taking ! ( except the HBP meds that was a no brainer ) . So I was also told when I went to see a different neurologist on the Hemi Facial Spasms that he couldn't see anything on the previous MRI ( why not do a new one ? or other tests ? ) and that Botox was the answer. I'm sure Botox paid his way through HARVARD and that is why. I'm not going to do that. So after trying even in all my pain and exhaustion to find out WTH is wrong with me and multiple tests like thyroid ultrasound resulting in tiny nodules but nothing specific and thyroid blood test being normal , MRI of my heart because heart disease runs in my family , xrays and MRI's of my lower back and hip , oh and my forearm / elbow last year for severe pain that mysteriously showed up there ... I started looking into chronic lyme. It seems I fit the patterns on steroids !!!!!! But I had a regular Lyme blood panel done ( not through non insurance docs cuz I can NOT afford that nor any of all of the cures that everyone is saying they have to pay for out of pocket , including the testing and that is even MORE depressing ... sigh ) ; it came back with only the IGM23 band positive. The rest were normal. So given I'm in the traditional med system as the only option I HAVE monetarily, and even that is a stretch for copays and LYFT rides to and from the doctors , I'm told I don't have LYME as you have to have at least 2 or more show up, and so the struggle goes on. I really feel like giving up and just accepting all this horrid pain and life because I really CANNOT afford to go the only route there IS to getting help from like you said your "LLMD SUPERSTAR for NY " who I'd guess IS Dr. Horowitz who I wish with ALL MY MIGHT I could go see as I feel G-D says HE is the one who could help me. Anyway. I know this all sounds like VENTING because frankly it IS hahahah and I'm pretty sure my boyfriend who lives long distance is sick of hearing me moan and moan and MOOOOOAN about it all . The point of getting on here to say something was that YES I HAVE ATYPICAL HEMIFACIAL SPASMS too and it sucks.hahahah.

JigsawJane said...
Hi I'm new on the board. I wanted to say I have Atypical Hemifacial Spasms that started last year or so ago along with debilitating depression and anxiety , fatigue, pain, etc. Now I'm experiencing pain in all my muscles , joints , nerves etc. Headaches. Vertigo can be severe sometimes. The bones in my shins hurt like HADES sometimes. THE BONE not like shin splints. Hot or Cold , never just right body temp. I was diagnosed with Spondylolisthesis on my L4 vertebrae and Piriformis sydrome. I have heart racing and blood pressure issues which I now think after reading may be POTS. Basically , I scored 129 and then some on Dr. Horowitz MSIDS quiz online. I've been tested for the HemiFacial spasms with just an MRI. They said it's non-specific meaning they can't see a cause (I though I might have MS due to some other odd muscle spasms I have all over at times). I'm also sensitive to meds so when I tried the baclofen , I had the rarest reaction of vaginal bleeding ( after menopause for FIVE years ! ) the second day ! I stopped that pronto. I do take sertriline for depression and now diazapam for the anxiety and spasms and a low dose High Blood Pressure med. All bandaids for all the odd symptoms. I could take other things I've been prescribed but I really DON'T want to be a walking medicine cabinet ! It took me YEARS to be convinced to take what I am taking ! ( except the HBP meds that was a no brainer ) . So I was also told when I went to see a different neurologist on the Hemi Facial Spasms that he couldn't see anything on the previous MRI ( why not do a new one ? or other tests ? ) and that Botox was the answer. I'm sure Botox paid his way through HARVARD and that is why. I'm not going to do that. So after trying even in all my pain and exhaustion to find out WTH is wrong with me and multiple tests like thyroid ultrasound resulting in tiny nodules but nothing specific and thyroid blood test being normal , MRI of my heart because heart disease runs in my family , xrays and MRI's of my lower back and hip , oh and my forearm / elbow last year for severe pain that mysteriously showed up there ... I started looking into chronic lyme. It seems I fit the patterns on steroids !!!!!! But I had a regular Lyme blood panel done ( not through non insurance docs cuz I can NOT afford that nor any of all of the cures that everyone is saying they have to pay for out of pocket , including the testing and that is even MORE depressing ... sigh ) ; it came back with only the IGM23 band positive. The rest were normal. So given I'm in the traditional med system as the only option I HAVE monetarily, and even that is a stretch for copays and LYFT rides to and from the doctors , I'm told I don't have LYME as you have to have at least 2 or more show up, and so the struggle goes on. I really feel like giving up and just accepting all this horrid pain and life because I really CANNOT afford to go the only route there IS to getting help from like you said your "LLMD SUPERSTAR for NY " who I'd guess IS Dr. Horowitz who I wish with ALL MY MIGHT I could go see as I feel G-D says HE is the one who could help me. Anyway. I know this all sounds like VENTING because frankly it IS hahahah and I'm pretty sure my boyfriend who lives long distance is sick of hearing me moan and moan and MOOOOOAN about it all . The point of getting on here to say something was that YES I HAVE ATYPICAL HEMIFACIAL SPASMS too and it sucks.hahahah.

My doctor is a regular doctor and I'm treating my chronic lyme all on my own... You could look into Buhner's protocol and start adding some lyme killing herbs. You don't have to have an LLMD to be cured, although I'm sure it helps with questions and guidance but it's possible to trial and error on your own and ask questions here and make progress in the right direction.

The main herbs are Japanese knotweed, andrographis, and cat's claw. Some other herbs are used for co-infections like sida acuta, cryptolepis, and alchornea. Some people here also go about changing their diets. They also usually add in detox regimens like epsom salt baths and saunas.

You could make a new post here just saying you're new and can't get an LLMD and asking for advice. There is a sticky at the top of the forum that says New to Lyme that you can read to help get an idea of how to start self care.

Thank you everyone. If I could afford to see an LLMD and or all the protocols costs in herbs , oils etc I would ! Right now I have 40 dollars in the bank LOL sooooo... I live in Nashville TN. I have searched and there in only one known LLMD here. My insurance in from the Marketplace (Oscar TN, Silver 150 ). I've studied a lot online and it's really hard to determine which protocols are correct for each case anyway ! I think you could spend a lot of money before you found the right combo. As I don't have money anyway , I suppose that doesn't matter. I think you all are BRAVE and MIGHTY SOLDIERS and I appreciate your caring hearts! I'll keep on board to hear your stories and pray for everyone ! I did vent a lot , but I really only MEANT to comment on the Facial Spasms :D hahahah. Pain makes you do funny things am I right ? HUGS for everyone if you can stand them !