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Posted by: honeycw27 ® 07/01/2011, 07:37:33 |
Hi everyone i seem to be suffering from vibrating vision from the constant 24/7 twitching in my eyelids just wondered if anyone else knows what i mean and also when my eyes are closed my lids go mad with spasms...when im just about to go to sleep my boyfriend notices my lids twitching when my eyes are closed and also when i look down i can see my bottom lashes kind of knocking together...awfully strange...it still amazes me at what these twitches are capable of...im currently waiting for a pre op assessment for a pretarsel orbicularis myectomy as botox and drugs didnt help me at all....im praying and hoping it works but theres unfortunately no guarantee...any replies would be grateful...Honey :) |
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Posted by: Norm ® 07/01/2011, 15:50:10 |
Hi Honey,
Boy, the girlfriend might not like that. LMAO You didn't mention how long you have had the condition and all the different facial movements you experience,
After stating botox and getting up to 100 units they didn't stop but I don't notice it as often. Or maybe my spasms have just changed over time. Have a great day,
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Posted by: honeycw27 ® 07/01/2011, 16:28:25 |
Hi Norm, My sympotms started about a year and a half ago, im only just 28 my main symptom was shimmering vision and vibrating vision and now when i half close my eyes or squint my eyelids flutter aggressively...as the years gone on i feel it more... it feels like i have a bag of worms dancing all around my eyes! so i suppose this is the start for me as at the moment they are not forced closed.....i was certain it was my eye moving at first but ive seen a couple of specialists who have assured me its not my eye thats moving its the twitch causing it to feel like its moving.....i still cant get my head round these annoying and powerful twitches!!! ive tried botox and drug therapy with anti cinvulsants but neither had an effect, so im currently waiting for a partial myectomy....so glad ive found someone whos experienced the "vibrating vision" as not many other people have mentioned this they all just seem to say they have spasms that force shut their eyes ...whereas mine isnt to that stage yet...thank goodness...how do you relieve the spasms? and does it make you feel off balance and a bit odd? i hate it one day i was fine and than i was not, i get slight relief when i gently pull my lid forward or if i tilt my head right back :( i used to go out all the time but very rarely leave the house because f the way it makes me feel so im praying and hoping this surgery works so i can get my life back on track.....what helps your spasms? botox? or have you had surgery? Honey :) |
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Posted by: Norm ® 07/01/2011, 17:27:21 |
My only dizziness if probably from the medication I take. LMAO
My spasms are some-what controlled by the meds and botox. I do understand your statement that one day you were ok and the next it hit you. I felt the same way. Only I was diagnosed at 42. You are a lot younger than most of us and most that get diagnosed with BEB. I am just curious about the surgery so soon. I do hope you have a good doctor that is knowledgeable on not only the myectomy but Blepharospasms and maybe other dystonia. It just seems extreme so soon. I have had this for 6-7yrs and i haven't had the surgery. So far I get along with the typical treatments. You do seem to have a little different type of condition so i am hoping that your doctor knows what he is looking at.
Good luck and let us know what the outcome is.
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Posted by: honeycw27 ® 07/02/2011, 04:02:58 |
unfortunately nothing has worked for me in regards to botox boy have i tried had soooooo many injections and im one of the unlucky ones who never responded to any type :( Im seeing the best oculoplastic surgeon in the uk so i now m definately in capable hands his name is brian leatherbarrow he trains surgeons around the world...i know what you mean but he says this is my last option as nothing has worked so far...ill keep you updated over the next few months Have a nice weekend
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Posted by: In Indiana ® 07/03/2011, 06:46:16 |
Honey-
I'm so sorry you are dealing with this. Being only 28 years old, you are way too young for this to be "benign essential blepahrospasm". I'm going to just throw some ideas at you - I also am someone who was younger when this hit, but I do really well now. Have you ever noticed that the fluttering is worse depending upon what you eat? If so, try avoiding the foods that are bothersome and see if that makes a difference. Are you by chance someone who gets migraines? If so, try to avoid foods that commonly trigger migraines. I do agree with the plastic surgeon - a partial myectomy is a last resort. This surgery is helpful to some, but others don't do as well, and continue to require Botox. How many medications have you tried? Are you taking a multivitamin and Omega 3's? Have you tried large doses of B12 (with your physician's approval, of course)? Medications may be to blame as well. If you happen to be taking hormones, that would be something I would suspect could be contributing. If you haven't already, try a yoga class or two. Please keep searching for the cause and for things that help. It may be a combination of things. It's nice to think that the surgery will fix this, but when you mention feeling off balance and odd, then there's more to this puzzle than just the eye fluttering. When you feel that way, have you tried eating a piece of candy? Your blood glucose level could be low. My eye spasms are worse when my blood glucose level drops, and I keep glucose tablets with me at all times. I buy them at a drug store in the diabetes area. Glucose tablets work much more quickly than a piece of candy does (and only 15 calories ;o) ). It's worth a try the next time you feel that way to try one or two glucose tablets. If that helps your eye muscles and that feeling, I can give you more details about what this may be. You're not alone! Hang in there. Take care. |
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Posted by: honeycw27 ® 07/09/2011, 10:25:11 |
Hi,
Only just seen your post...sorry....my twitching is constant 24/7 ...my diet is high on fresh food and lots of veg so i dont think its related to this...i also dont drink tea or coffee or anything alcoholic...i know a few people have mentioned that cutting down on these can help but as i dont drink them then i dont really suppose it could help me. ive tried a few medications over the space of a year i can remember tegretol, phenytoin and anothe one beginning with l? but had no effect and made me feel awful from the side effects. had over 30 botox injections and no relief ...they think i could be intolerant :( The only thing you`ve mentioned which im not sure about is the B12 im at the hospital on friday for my pre op assessment so ive got a list of questions so i shell mention this and i presume they could test my blood? i shall ask them definately i came off the pill when i was trying the medication as it broke it down so im not on anything havent been for a while. the off baance feeling could be due to the fact im partially sighted only got 20% vision in my right eye so as my eyes struggle normally i think this may have something to do with it but again ill ask them on friday.
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Posted by: In Indiana ® 07/15/2011, 11:23:57 |
Hi-
A diet high in fresh food/lots of vegetables is also most likely high in potassium. Ironically, when my blepharospasm was really, really bad was when I was trying very hard to eat a very healthy, lowfat diet. What I didn't know then was that my muscles are sensitive to potassium; once I learned what foods were high in potassium and started avoiding them, it made a huge difference. If you find that glucose helps, or that certain foods (especially high potassium) seem to cause issues, then I would suggest finding a physician who specializes in ion channel disorders/myotonia before having surgery, if you haven't already. There are many types of ion channel disorders (migraines, epilepsy, for example) but some affect the muscles, in fact at least one has been found to affect only the eye muscles (a form of SCN4A mutation - Tatia has posted about this one recently). Best wishes! |
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Posted by: hasty ® 07/15/2011, 13:29:13 |
Tricky conditions! Good info from good people here about both. Our education here is ongoing, thanks! Modified by hasty at Fri, Jul 15, 2011, 15:46:14 |
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Posted by: honeycw27 ® 07/15/2011, 14:41:55 |
hi
At first when i got my symptoms i was told it was similar to orbicularis neuro-myotonia after my EMG showed very radical readings from my muscles around both my eye so i was tested for the SCN4A VGPotassium chennels and various other things at the oxford radcliffe here in the uk but everything came back normal but thanks for the input as this could be useful to other readers who havent been tested. my symptoms are a mixture of both blephs and orbicularis neuromyotonia....as they are both very similar with the muscles twitching . Its interesting about the potassium though.
when maybe this isnt doing us as much good as we thought!! lol!! Thanks for your reply :) |
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Posted by: In Indiana ® 07/15/2011, 21:18:55 |
I am so thrilled to hear that you were tested for an SCNA4 mutation - sounds like you have a very thorough physician.
I still try my best to eat healthy. t don't notice spasms after eating apples, blueberries, carrots, and cucumbers, which are all fairly low in potassium. Best wishes - |
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Posted by: tatia ® 07/17/2011, 00:23:26 |
Interesting! Did they test you for the VGKC antibodies? Do you participate on the neuromyotonia forum? |
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Posted by: honeycw27 ® 07/17/2011, 05:50:04 |
Hi Yes got tested for all of those and they came back clear
I did join the forum but everyone on there seemed to have the issues in their bodies and not so much the eyes so didnt find much help I had an EMG and the readings showed the discharges to be consistent with neuromyotonia...constant bursts of persistent myokymia in my orbicularis oculi muscles. But when i tightly squeeze my eye muscles and re open my eyes they pull inward like my eyes want to close and the constant flickering of my lids and constant twitching 24/7 show signs of blephs so got a bit of both.the symptoms are very similar and highly disabling for me. Have you been tested for anti bodies?? Honey .
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Posted by: tatia ® 07/20/2011, 15:24:05 |
Hi Honey, That's great your doctors are being so thorough. Your description of your eyes pulling after squeezing them tightly sounds just like me. But I don't have the constant myokymia so antibody testing hasn't been considered. BEB experts say that blepharospasm usually has a triggering factor, in most cases, dry eyes. I suspect that in some people, another eyelid condition such as myotonia or myasthenia can act as a triggering factor. |
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Posted by: hasty ® 07/02/2011, 07:06:27 |
I noticed you said when you look down, you see your bottom eyelashes knocking together. There is a condition called Entropian, I think, that involves inverted eyelashes, the lower lashes turning inward towards the eye. I wonder if you have something similar to that? Modified by hasty at Sat, Jul 02, 2011, 07:10:24 |
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Posted by: honeycw27 ® 07/02/2011, 07:16:11 |
no ive definately been diagnosed with blephrospasm but maybe that is an extra thing on top of it?? hmmmm ill look into it.........thanks :) Honey :) |
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Posted by: hasty ® 07/02/2011, 07:27:31 |
Sorry, I misspelled it. And there seems to be several names & types for it. I googled it & it involves the lower lids being inverted & causing the lower lashes to turn or roll inward. So pehaps your lower lids aren't inverted & you can rule that out? I think Shirley Barr, a bb member, described something similar in her experience? Perhaps she'll check in on your post! Best wishes.. Modified by hasty at Sat, Jul 02, 2011, 08:59:39 |
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Posted by: hasty ® 07/03/2011, 09:02:23 |
I googled "flickering vibrating vision" & there are lots of sites & forums with people describing vibrating vision & their gamut of diagnostics, with interesting & sometimes complex possibilities, including inner ear disorders. Some included the feeling "off balance & a bit odd" you mentioned, too. Their experiences may not be related to yours, but when you have a minute, you may want to browse thru them. If your ISP/server doesn't offer any or many such sites, I'd be happy to link a few to you, in email, if you wish! Modified by hasty at Sun, Jul 03, 2011, 09:24:28 |
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Posted by: honeycw27 ® 07/07/2011, 06:26:21 |
Ive googled it so many times and read a lot about it but none of them have twitchin eyelids....my eyelids twitch constantly and its really noticible when i close my eyes...i also was born with only 20% vision in my right eye so im wondering whether this could cause me to feel a bit odd as i really only have proper vision in my left eye...one lady has described the vibrating vision im describing and she said thats how her blephs started and her lids fluttered like a humming birds wings which is exactly what mine do....ive had a diagnosis of blephs from 2 different doctors one a opthalmologist and one oculoplastic surgeon who specialises in blephs but my eyes are not being closed by it but ive been told that that could happen as its a progresive disorder...i suppose everyones different but its always good to hear from people who experience the same symptoms and im not really finding many with the vibrating vision...but if i gently pull my lid it relieves it and if i tilt my head really far back that relieves it and lots of people have said this happens with their blephs ?? its so annoying and just want the twitching to stop!! thanks for your reply :) |
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Posted by: Shirley Barr in New Mexico ® 07/07/2011, 07:55:53 |
http://www.blepharospasm.org/forumarchives/beb1/26071.html The above link goes to a archived set of postings on Myokymia which may be what you are describing. My eyelids will do this twitching or tiny back and forth motion. It can be very irritating but didn't really ever notice that it effected my vision too much. Sometimes I wasn't even too aware of it unless I looked in a mirror and saw it. I'm not positive this is what you are describing but you could look into it. I'll also enclose a link at the bottom of this page on some information describing eyelid Myokymia. Botox injections in that area do take care of it for me. You could possibly have the Myokymia and not blepharospasm. Mine does go along with my Blepharospasm but it can be two separate issues. Click on the below link for additional information on Myokymia. Let me know if this sounds like what you are dealing with. Shirley in New Mexico where the sun is shining and hoping that the smoke from fires around Los Alamos stays away.
Related link: http://en.wikipedia.org/wiki/Myokymia |
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Posted by: honeycw27 ® 07/09/2011, 08:43:06 |
Hi Shirley thanks for your post. Ive read all about myokymia and i think i have a bit of both...i feel like my symtoms are a mixture ....mine is constant 24/7 even when i close my eyes i can still see the twitching...myokymia says its fine rippling of the muscles and maybe this is what im experiencing in regards to my shaky vision sometimes. Another factor that may make me feel everything a bit differently , not sure whether ive mentioned it before but i have only got vision in my left eye ...from birth my right eye has only 20% vision so maybe his is why i feel the symptoms are slightly different?? who knows??? all i know is i just want it to stop as its getting me down so much ...who would of thought a twitch could cause so much hassle!! :(
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Posted by: Delaine from TN and traveling ® 07/15/2011, 14:19:57 |
After I had a limited myectomy in 2000, my eyelashes turned downward. I asked others on the BEBBB if that was a side effect of the surgery and some replied that theirs did this without surgery. I had been getting Botox for almost a year and the Botox had not caused it. It was more annoying in the beginning and I tried to curl my eyelashes but it was difficult to do and it didn't last. I guess my eyes adjusted. The top eyelashes turn down, but I don't seem to see them so much. I do occasionally have a feeling of flickering lights and twitching around eyelashes but not often. Usually it is when I am really tired or exposed to the wrong type of lighting.
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Posted by: bjd ® 07/15/2011, 23:46:58 |
I had forgotten about the flickering and somewhat vibrating because I have not had it on top of my list.
Your discussion on the board reminds me that I had this problem for a while when I went to bed and it troubled me so bad trying to go to sleep, I would often get up, watch TV or get on the computer and try to go to bed later. For me it was not only troubling, but extremely exhausting and painful. Don't know if my problem was the same but it troubled me early on about when I was diagnosed.
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Posted by: honeycw27 ® 07/16/2011, 05:42:14 |
I know exactly what you mean....when im closing my eyes to go to sleep its like my muscles are having a disco...when i close my eyes what i see can be described as when you light a candle at night and it flickers thats kind of what i see...not sure if this makes sense? it never stops....i take 25mg of anti depressant amitriptyline to help with my depression since this all began and they are a sedative aswell as i couldnt sleep atall at first like you say ..your eyes never seemed to shut off. this helps me go to sleep..thankfully. Like you say its not top of your mind at the moment as the closure kind of overtakes peoples memories of when it first started for them......i appreciate you remembering what im describing now as im only 28 and been going through this for the past year and a half..gradually each day getting worse. i have trouble focusing on things...which leads me to squint..which then leads to my spasms going nuts...i cant seem to win.
botox and drugs didnt help me so im hoping this will. Thanks for your input this board is great and everyones experiences are different but in there own way lead to help us all.
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Posted by: bjd ® 07/19/2011, 04:45:33 |
Honey cw 27
Thats quite a handle. A little more detail of how I felt may be valuable to you. I had talked to my Dr. about the sensation that mu focus muscles were screwed up, and that I felt I was losing contact with my brain. He alluded to me, with confidence that it was the obicularis muscles causing most of this. HE SEEMS CORRECT. The light that you refer to as like a flickering candle. To me it was more as a sensation of light filtering thru my eyelids , or possibly the sensation of light I had seen that took time to disipate from the sensors in my eyes. You know, when you see something bright it can take time for the immage or light to disolve from inside your eye. I played around with this quite a bit and concluded it was not a residue light sensation which needed time to disipate or even light filtering thru my lids. It was there even after long time in complete darkness. I figured it had to be from a source of it's own, whether neurological or muscle generated. I am the farthest from a physition or expert you can find ,but I came up with conclusions that I still Hold. If you were to hold your hand or fingers over your eyes with moderate pressure, you would turn up with irratic and weird light sensations in your closed eyes. caused by probably the eyeball preasure and nerve tension. I believe this is the same principle caused by spasm of the orbicularis muscles putting unnatural pressure on your eye ball. I had no clue what Blepherospasm was, going to my doctor, but I remember telling him that it felt like the focus muscles of my eyeball malfunctioning and even causing my eyesight to be screwed up, and pulled out of focus. My perception of what was going on. I didn't know how the eye works. somehow we need to be able to describe our symptoms in a manner that the doctor is understanding what we are thinking. This is a problem because we come from different study , understanding and background. I am anything but a Dr. but these are my thoughts and perceptions, worth just less than you paid for them. good luck Brad
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Posted by: honeycw27 ® 07/19/2011, 05:35:37 |
Thanks Brad I know exactly what you mean...the sensations are still there long into the darkness. I do believe that it is the orbicularis spasms that are putting pressure on my eyeball like you say as ive had 4 specialists examine my eyes and they have all assured me my eye is NOT moving. I really hope this is the case as this is why im going through with the surgery...but as you know theres no guarantee but ive got everything crossed it will help me in some shape or form. I still cant get my head around the fact that these spasms cause such annoyance and disability Im glad ive found someone who shares what im describing and knowing im not alone. Been quite down about it recently but im trying not to let it get to me to much but its hard Take care
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Posted by: honeycw27 ® 07/19/2011, 05:36:01 |
Thanks Brad I know exactly what you mean...the sensations are still there long into the darkness. I do believe that it is the orbicularis spasms that are putting pressure on my eyeball like you say as ive had 4 specialists examine my eyes and they have all assured me my eye is NOT moving. I really hope this is the case as this is why im going through with the surgery...but as you know theres no guarantee but ive got everything crossed it will help me in some shape or form. I still cant get my head around the fact that these spasms cause such annoyance and disability Im glad ive found someone who shares what im describing and knowing im not alone. Been quite down about it recently but im trying not to let it get to me to much but its hard Take care
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Posted by: pdb ® 07/19/2011, 18:57:45 |
I've just read through this thread again, because I was puzzled. You are clearly having a tough time of it, and it sounds like you have your hopes up that a myectomy will solve the problem. But if you don't mind, here's a question or two and some thoughts on this. First, you say two things that intrigue me: symptoms started 18 months ago, and you said you’ve "had over 30 botox injections and no relief ...they think i could be intolerant". If that meant 30 separate visits to the doctor for shots, that would mean shots every 18 days approx. So I'll assume that's not what you meant. If you mean you've had 30 individual points of injection, then that's not much at all. My thought here is that many people find that they don't get to a good set of results from botulinum toxin injections until they've persevered a lot more than that. Also, intolerance is not common, and even without doing blood tests to check for antibodies, there are simple ways of checking if your body is responding to the toxin, by injecting areas of the face where there are some wrinkles. If the wrinkles smooth out, you are not toxin intolerant. I'm ignoring here the fact that you are 28 and hopefully don't have any wrinkles.... I don’t know how many doctors you have had doing the injecting. Some of us find we get no good results at all with a particular injector, but good results with another. How many different doctors have injected you? Were they open to discussion on changing injection locations, trying different strengths of doses and so on? If it was only one or two, and they did not try significant variations in injection strengths and locations, then you have a long way to go before it would be reasonable (IMHO) to give up on botulinum toxin. Which also leads to the question, did any of the injectors try using the type B botulinum toxin called Myobloc? The doctor you refer to for your proposed myectomy is certainly one of the top names, and I don’t doubt for a minute he will do a great job. The real question is, is having a myectomy the right thing to do at this stage? Of course I may have misunderstood what you’ve been through so far re injection techniques, doses and doctors, but if not then perhaps further variations on botulinum toxin injections should be considered. Cheers
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Posted by: honeycw27 ® 07/20/2011, 03:58:59 |
Hi Peter, Yes i was going very frequently as they werent being effective each time i went they tried different places to inject and to no relief. I think the highest dose i was given was 100ml , they tried botulinum toxin A dysport and B but nothing was successful in regards to helping my spasms i did suffer ptosis from the higher dose which was a complete nightmare as i only have proper vision in my left eye so i was literally blind as i could only see by lifting my lid open myself. this was not good and made me very depressed...also ive had a really bad reaction to botox before i actually have a squint in my right eye and have had since birth...i had a couple of operatons to tighten the muscles over the years but they said instead of operating next time to try botox injections into my actual eyeball to freeze the muscle. I agreed even though it was not pleasant as you can imagine but it worked for the first year and then i suffered an extreme reaction to which my opthalmologist said that hes never seen before My pupil was literally moved to the other side of my eye socket ( it looked like i was looking at my ear...was awful and they said two weeks until it would go back central....it actually took 7 months!!! so im not botox`s biggest fan as you can imagine and to get me to have it for this took a lot of persuading!!
i know a lot of you get botox and find relief from it but after my past with it and all the upset its caused i was advised about the surgery. Im my opinion i think this is my best option and why keep trying with botox when the results are not predictable for me and unsuccessful and have cused me a lot of upset from various doctors. Im hoping the surgery will help but im also aware that theres no guarantee. But my specialist had advised me so i have took on his advice as i trust his judgement and feel this is the right option for me personally. Thanks
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Posted by: Hiccup ® 07/23/2011, 14:40:25 |
Hi, I've been reading through your posts and have found it very interesting as you are also quite young to have this condition. I am eighteen and have recently been diagnosed with Blepharospasm. I received my first 'course' of botox injections a few weeks ago in one eye and so far there seems to be a slight difference (fingers crossed). I noticed that you described the feeling as 'flickering/vibrating' vision which I also experience. I was just wondering how long you have been suffering from this and if you seem to think it gets worse? I find this condition very embarrassing and awkward and was just hoping to share some thoughts as I haven't yet found anyone who really understands due to being non-sufferers. Thanks |
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Posted by: honeycw27 ® 07/24/2011, 06:21:40 |
Hi, Yes i seem to be one of the young ones but your only 18 :(
Mine isnt at this stage yet and i can only describe it as 24/7 twitching ,persistent myokymia ,i thought it was my eyeball moving as it feels like my eyes are vibrating but ive been assured its not my eyebell and the sensation i get is as if the twitch is putting pressure on my eyeball and making my vision odd is this what you experience?. when i half close my eyes my eyelids upper and lower twitch uncontrolably and if i squeeze my eys shut and let them go they twitch uncontrolably :( hate it!! also when i close my eyes its still there 24/7 do you find you still see the twitching even with your eyes shut? ive described it as like when a candle flickers at night time thats what i kind of see? i do have to saw mine has got worse over the past few months im awaiting surgery as botox wasnt successfull for me i saw in another post that your from the uk...so am i i live in macclesfield cheshire...who do you see in regards to your blephs? im under mr marsh at liverpool and brian leatherbarrow at manchster eye hospital in regards to my surgery. so what are your symptoms??? keep in touch :) Modified by honeycw27 at Sun, Jul 24, 2011, 13:12:00 |
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Posted by: Hiccup ® 07/25/2011, 09:04:56 |
Mine also isn't yet at that stage, I know this probably sounds stupid but do all cases reach that stage do you know? Because I have been doing some research and most places seem to describe Blepharospasm as a progressive condition. Yes, I experience very similar conditions and linking back to before my eyes don't get forced shut but sometimes it as though they are blinking in an over exaggerated sense, i don't really know how to describe it other than a big blink? I don't think my vision is effected as severely as you, however I do find it hard to focus at times and suffer from double vision sometimes. I also find myself tilting my head back in order to see as my eyes are constantly squinting, do you find that? My eyes are always twitching too, it is horrible isn't it! Yes, when I close my eyes they twitch. When I was a bit younger my friends used to do my make up but my eyes twitched too much for them to apply eye shadow and mascara when they were closed which was really embarrassing :(. How are you feeling about the surgery? I'm from Taunton in Somerset. Well, I have seen so many people it's ridiculous! But I am seeing someone called Dr. Fish at the Musgrove in Taunton for my botox. However, I went up to Bristol last year but that was unsuccessful. Speak soon :) |
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Posted by: honeycw27 ® 07/25/2011, 10:06:38 |
hey yeah i find myself tilting back..not the greatest look!! lol!! ive only got 20 % vision in my right eye so think that that may be why im finding it more difficult aww bless you with the make up but mine do it to so your not alone. im nervous about the surgery as ive no guarantee that the twitch is causing my vibrating vision etc but i wont know until i do it i suppose and theres no guarantee anyway that it will help nd ive been advised i wont know whether its worked for at least 6-12 weeks after due to intense swelling as im having upper and lower done together but i trust my surgeon. His names brian leatherbarrow if you google him hes the best here in the uk so im in the best hands so that makes me feel a bit better. apparently blephs is a progressive disease but my surgeon said theres no way he can tell whether mine will go to that stage as everybody is different...i hope it doesnt but suppose we wont know until a bit later on in life. glad your getting relief from botox and have found a surgeon that understands as i know how you feel i got told it was all in my head from a couple so just had to move on and keep at it. i find it hard to focus like you say but then when i squint my twitch goes nuts!! i cant win!! lol!! im awaiting a date for surgery but the waiting list is 8-12 weeks :( so ill keep you updated. Theres also a facebook page for "living with blephrospasm" which is really useful so join us and you can get lots of great info and stories on there as everyones different :) speak soon
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Posted by: Hiccup ® 07/29/2011, 18:44:33 |
Hi, No it's not haha! Yeah, I can imagine it would be. Don't worry though, i feel lopsided at the moment as they would only give me botox in one eye to start with so that one looks wider and more normal than the other which is weird. I hope it does work! You'll have to let me know when it is and everything. I'll have my fingers crossed for you :). I will do that. Yeah, at least you know he is the best :). I hope it doesn't either, it's bad enough as it is. It was horrible hearing that it was all in my head, at least we know we aren't mad! Yeah, my twitching is always going nuts. I just want to wake up oneday and not have it. Thank you for adding me to the facebook group. :) |
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