Hi everyone & thanks for letting me join your groupI'll start by saying I don't think I have ALS or MS. I have doubted MS but all my scans were clear, so thankfully you don't need to offer me any re-assurance there.Over 18 months ago I started with spasms in my right eye, I say spasms because they were painless but definitely trying to clamp shut, like a pulling feeling. No real twitching at this stage, only the odd one in the affected eye. Within 3 months my mouth was pulling down & spasming, blurred vision, mild cramps in left hand and intermittent lisping. By this time I had got my neuro appointment and was diagnosed with Myasthaenia Gravis and given Mestinon. I had the blood test and scan of the thymus, the blood test was clear and at my next neuro appt I saw another Dr., he told me he thought I had hemifacial spasm. I then asked how he knew that, he said he just knew by looking at the spasms and that my blood tests were clear. The thymus scan didn't come out well apparently and he said he wouldn't be repeating it and sent me for brain scans "to see what was causing the hemifacial spasms". Well, thankfully they were clear too. Apparently these spasms can occur through brain tumour, MS, blood vessels pressing on the facial nerve or unknown. I've always been convinced it wasn't hemifacial spasm because I had swallowing trouble, a funny left hand, lisping and by this time blurred vision. While taking mestinon I had the odd twitch I thought due to the mestinon. 6 months later I saw a Myasthenia specialist at Oxford, he also ruled out MG and said he thought it was "some sort of hemifacial spasm". You can imagine how fed up I was still no clear explanation, no reason for spasms on both sides of the face, swallowing trouble, speech problems, vision problems ..... It seems be that neuro's are only interested in what they can visibly see - at this point facial spasms. I then stopped the mestinon - wow what a change, I was twitching from head to toe, it started in one leg and was continuous for 24 hrs, it then calmed down but became more widespread. Initially I was getting jerks pins & needles, numbness and all sorts. I blamed much of it on stopping mestinon and eventually my GP prescribed lyrica, this seems to work on the swallowing which I find unbearable.Fast forward 12 months, I am still twitching head to toe, worse at rest. I get the jitters on a regular basis and can only get relief from sleeping. I had a bad spell a few weeks ago, spurred by doing too much, then I started lisping, the swallowing was awful, feeling of my throat collapsing, mucus stuck there. The spasms in my head were awful, it felt like it was about to split. I went to my GP, she gave me some tegratol instead of Lyrica, I tried it but the swallowing which had by now settled came back with avengeance.Does anyone have any hints for meds?? Anyone with similar problems. I think mine is BFCS as I definitely get cramping and spasms, please someone correct me if you think I am wrong. I am 42 yrs & want my life back.Any Advice is welcome. I live with this and forget about it as much as I can but when I get an attack of the jitters and severe spasms its difficult to forget about it. I know I need to slow down sometimes, but I have give up 2 days at work now. Partly due to this and partly due to problems I had with my leg - hip replacement and major re-alignment op.Thanks
New to Group - Eye Spasms
- Thread starter duckyduck
- Start date
Hi, sorry that I cant help a whole lot, but I know how hard it can be to be a newbie and wait for responses, but others will be along soon, trust me, this forum is very supportive. I'm a twitcher from head to toe, I get them everywhere, but alot are in my legs and feet. The swallowing issue and throat issues are common among alot of us here, I'm dealing with throat issues today actuality, trying to ignore it, but very hard. Keeps feeling like I need to clear my throat but that seems to just aggravate it. My speech slurrs from time to time also, but not sure whats causing it, but its been happening since this stuff started for me 7 months ago.Vibrating and buzzing, pins and needle sensations are also very common here along with migrating numbness, numbness is a big problem with me, I've had MRI's to rule out MS and such, but all clear I guess. Tremors and shaky lymbs are also very common here. May I ask if you have had an EMG yet?? Not trying to be nosy, just curious. May I also ask what do you mean by spasms in your head? Do you mean the ones in your face or are you talking about something different.Oh, and the vision thing, I havnt really searched to see if that is common here or not, but it wouldnt surprise me at all. My vision goes from being cloudy, blurry, to floaters, and sometimes even pain in my eyes.The search engine at the top of the screen can be a life saver when you need some assurance or answers quick, it saved my life a few times, just type in your symptoms and watch how much you pull up on other posters, You'll be surprised. If you need to talk or need help with anything you are welcome to PM me.Welcome to the community 
) Robynn )
) Robynn )Thanks for you replies.Robynn, I've only had a single fibre EMG on my face and I think that was to rule out myasthenia. I am in the UK and should really ask my GP to refer me to another Neuro as mine isn't very interested. He just ruled out the bad stuff, told me hemifacial spasm, bfs, globus and left it at that - oh and I can have botox for the facial spasms. The thing is I know botox can cause muscle weakness so I'd rather leave alone. The facial spasms can be strong at times pulling my head down. They go up to my forehead and just felt like they were pulling my head in 2 a couple of weeks ago, thankfully I've not had them as bad since. They mainly affect the right side of my face including mouth and left eye.My GP just did a CK blood test, thankfully that is normal. My vision is intermittent blurred and when things got bad over the last few weeks I even had arythmia heart beats, scarey. The twitching was bad and in the chest area too then I got these fluttery, racey beats. Thankfully no more.Tina
AllGoodHere
Well-known member
Like others here, I went through a bout of facial and head tensions so if you search at the forum you will see how many and it may help - just in not feeling like it is only happening to you. I had TMJ for a while, some eye twitching stuff, and severe neck tension with headaches - an oh, this weird symptom that was like having a bug caught in my ear (actually a spasming muscle affecting the inner ear). I don't get this much anymore - as 43RichyThe43rd said - things tend to get better as time goes on one way or the other (we learn to live with it, get rid of it and heal, or it just goes away). What helped at the time was seeing this PT that performed a therapy called cranial sacral therapy. I don't know that it 'cured' me but it did allow for complete relaxation of the face, neck and scalp which probably allowed the tension to move out of the area. But if that is not available there are lots of things you can do yourself to release facial and neck tension and you should try these just to get a break. None of the other body twitches, tensions, etc. bothered me as much as the head and neck ones as they made also a bit nauseated, off-balance, with some vision stuff. So I am sorry you are dealing with this - here are some links about things you can do for yourself. Take what you like and see if it helps.
Thanks AllGoodHereI've got used to the facial spasms, it's been over 18 months since they started, although they have got progressively worse - but do calm down sometimes & I can ignore them then. They definitely get aggravated when driving but I'm used to that. I just had a really bad attack over the last few weeks to the point where I had no control, even with the meds. The swallowing is the worst thing ever for me. My throat just stays in spasm for days on end, lyrica is the only thing that seems to help, though it doesn't seem to help the twitching as much. Not to mention talking with a lisp for 3 weeks.Do you take meds? I don't like taking any meds, I weaned myself of lyrica a few months ago, I remembered why I started to take it when I got this recent attack & wow what a relief, even after a couple of days of starting to take it again. I do feel like things are stabilising now and I know that doing too much makes me worse, did you used to get like this? I deal with it but I honestly feel like it runs my life. I do what I want, when I want but suffer the consequenses when I overdo it. I will know when it's getting better, when I can have a busy few days, without having to collapse in the armchair mid-day to re-charge....., stop getting intermittent blurry vision, a lisp & very bad jitters or maybe it's just one of those things when you're getting a bit older.Keep smiling )
)Thanks for the re-assurance.When I say I feel like it runs my life, I definitely don't mean that it stops me from doing too many things, no way. I love life, I'm always busy. I work 3 long days, usually I'm out for about 10 hours, then at either end I have to go to the small holding I have to feed the animals. I have horses & drive one of them at least every Friday. I spend most my spare time at the smallholding, trying to keep the place tidy - talking to the animals LOL, I'm a right little doctor doolittle!! So as you probably guessed, I'm not in the category of people who sit around too much worrying about it, I learnt not to do that after about the first 6 months, when you realise you're not well, but it's nothing serious. So to sum it all up I suppose I resent it bothering me at all!! The hours I spend sleeping in a chair to recover from the jitters I would much rather be spending riding/driving around the forest on my horse )
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