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Posted by: pdb ® 02/03/2004, 15:45:16 |
Given how much I read about delayed and incorrect diagnosis of BEB, I felt happy that I was diagnosed only a few months after onset. But now, because of travel I've gone to a new Dr at a Neurological Institute in London, and their diagnosis is not BEB but a dystonic tic. Hard to tell them apart, different reaction to certain drugs, but many simialr characteristics. Any experience of this from other board watchers? My NY Dr. is skeptical....... |
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Posted by: Shirley Barr in New Mexico ® 02/03/2004, 18:07:21 |
I imagine that some of the symptoms might look similar. I'm not sure that I understand the term "dystonic tic", though. Have they diagnosed you with Dystonia?
I've had tics before and they usually just affected one eye and it was just a mild to moderate intermittant muscle spasm lasting for brief periods of time. With the onset of Blepharospasm, the symptoms quickly included sustained forced closure. There was no mistaking a "tic" for Blepharospasm. Maybe you could describe your symptoms a bit more. We may also have a difference in terminology in London versus the US..... Shirley in New Mexico |
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Posted by: pdb ® 02/04/2004, 02:29:00 |
The symptoms are absolutely typical of everything I read about BEB, whether on this board or elsewhere. The dystonic tic terminology was completely familiar to my Manhattan based first diagnosing neurologist, so there is no issue on terminology. The Dystonia Foundation web site has an article on how hard it is to tell there things apart. The key test done apart from general observation of facial movements was to get me to keep my eyes open for as long as I could, without the involuntary closing. That turns out to be beyond 30 seconds, and the view was that if I had BEB I would not have been able to do that. On that basis the diagnosis was that I don't have dystonia, but a tic whose characteristics are very similar to dystonia, hence the terminology. Anyway, I'm interested in whether others with bleph can in fact keep themselves from blinking for a controlled period of time, and if so for now long? |
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Posted by: Raymond Fudge ® 02/04/2004, 11:18:15 |
There are times I can out stare anyone, and other times I can not get my eyes open to see what I am doing. It varies so that I have not been able to know what kind of day I will have or even from minute to minute. Just put on the best face I can and keep going, even when bumping into walls. |
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Posted by: Shirley Barr in New Mexico ® 02/04/2004, 19:06:30 |
Hello again pdb,
Well, I did a "google" search on "dystonic tic". It seems that the experts even disagree on symptoms and where a tic begins and or a dystonia begins. There is some overlapping it appears. The link to the Dystonia site is:
There were many other sites and one even termed Blepharospasm and Torticollis as "Dystonic Tics". A tic is typically defined as a rapid movement of a body part...sort of a compulsive thing and one that can often be controlled to an extent.
Personally I think that the confusion or lack of diagnosis of something more specific comes into play when a patient visits the doctor and symptoms don't appear at their worst. Frequently when I go in to see the doctor, my eyes don't misbehave too badly...could be due to excitement, me talking, different situation...whatever, but when I get back home or into a more normal situation my eyes may shut down on me. The doctor may have seen a minor problem but certainly didn't see sustained closure and me struggling to get or keep my eyes open. The doctor can't diagnose what he or she doesn't see unless they go by history from the patient(and sometimes that doesn't work either). Probably on my last doctor visit, the physician saw what could be termed a "tic" with brief periods of sustained closure. A Dystonic Tic(around the eyes) comes in three varieties...clonic(brief, intermittant), dystonic(some sustained closure) and tonic(sustained forced closure)....if I understood it correctly. Your doctors just appear to be saying that what they saw when you were in for your office visit was an intermittant tic with possibly some sustained closure with it.
Whether you have a tic or Primary Blepharospasm...they can both be treated with Botox and possibly medication. The issue here is one of severity of symptoms. If your symptoms are typically worse than how the doctor saw you, have someone film you so that they can see what is going on. Yes, tics can be a different diagnosis that BEB but sometimes it is just a matter of severity of symptoms. And yes, sometimes it is even hard for the doctors to tell when all they have to go on is what they "see" on a particular visit that last sometimes only a few minutes. Hope this helps a bit and didn't just add more confusion. Shirley in New Mexico who used to have simple motor tics and now has BEB |
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Posted by: pdb ® 02/05/2004, 11:46:18 |
Thanks for that, your research got further than mine did. I'm told by both the NY and the London specialist that dystonic tic responds much better to tetrabenazine than does BEB, so I'm going to get that prescribed and give it a go. Peter in London
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Posted by: Lynn Yarbrough ® 02/06/2004, 11:24:30 |
Shirley's advice about getting a "film" (actually a videotape is easier and cheaper) of yourself is VERY good. For one thing, unless you have such, you don't even know how you behave in your "tics" -- you can't see yourself blink. So get a video of yourself at your worst and take it with you to your Dr. It will be helpful to avoid the mistaken impression that "appointment calm" leaves, and it will help you to describe your experience in terms of a common point of view. Also, when you have your Botox shots and are feeling great, you can show your friends why you have to get treatments every so often. Or show it to your Congressional representative the next time the high cost of medical insurance becomes an issue. Remember, they have likely NEVER seen a case of this condition. --- Lynn |
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Posted by: Shirley Barr in New Mexico ® 02/06/2004, 12:37:26 |
I'll be interested in hearing how the tetrabenazene works for you. Keep us posted.
Shirley in New Mexico |
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Posted by: pdb ® 04/14/2004, 01:20:56 |
I'm now completely off tbz. See below for my note to the Dr. on my assessment of tbz Note on tetrabenazine effectiveness: tbz seems to cut spasms and clamping but not consistently. Some days with bad spasms in spite of it. Also some days when taking it would clearly calm the spasms, so inconsistent. Large dose side effects (3 tabs per day) not pleasant. Still don't know if its what stopped me sleeping. Now feel much better without the side effects (drowsiness, lack of enthusiasm, headaches etc). Back to plenty of blinks and spasms, but hopefully the latest round of botox will help with that. Peter |
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Posted by: Lynn Yarbrough ® 02/04/2004, 18:15:07 |
My Drs. use a simple test to diagnose BEB: held the patient's eyelids shut (pressed against the cheek) and ask the patient to open the lids. This is usually very difficult, and when the lids are released, the patient goes into a full-blown spasm. My guess is that this is somewhat different from tic symptoms. Of course, what you should do is ASK the Dr. what symptoms are used to discriminate between the two conditions. Do not hesitate to ask lots of questions, until you are certain that you understand your condition and all the details of the treatment you will get. It's far too easy to be misdiagnosed. --- Lynn |
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Posted by: pdb ® 02/05/2004, 11:53:10 |
can you explain that test a little more? My attempts at it give me no trouble opening my eyelids, with no spasm after, but I don't know if I'm doing it right. Do you mean pulling the eyelid to the side to hold it closed? |
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Posted by: Lynn Yarbrough ® 02/05/2004, 17:45:13 |
Have a friend stand in front of you as you close your eyes. Ask your friend to place the sides of her thunbs firmly on your eyelashes, against your cheek below the eyeball, then try to open your eyes. When he lets go, you will get a clue. Most people simply open their eyes. BEB'ers usually blink furiously for several seconds. (Botox sharply reduces this effect.) Another clue is the scope of the blinking - how many muscles are involved in blinking. For BEB'ers, its usually the whole area covered by the Lone Ranger's mask, including brows and cheeks. Normal blinks affect only the lids. I sometimes have tics in the muscles near the lids, usually along the outer edge of the skeletal cavity; but that's a whole other symptom of something else. --- Lynn |
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Posted by: pdb ® 02/10/2004, 16:45:43 |
We've tried the test you suggested, and I can either force my eyelids open, or if not, have no particular spasm or other reaction after the hold is released. I guess that says maybe Idon't have "breadn and butter" blepharospasm, as my nuerologist puts it. Thanks for the ideas and the test. I go back to my NY neurologist next week to see if he agrees with the guy in the UK that it's dystonic tic not BEB. Peter |
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Posted by: PDB ® 02/20/2004, 16:14:06 |
I've been on a trip to NY and visited my original neurologist, who spent over an hour observing my movements, talking it through, and video taping me for review with his other colleagues. He sticks with his view that it's BEB (with touches of meige appearing), but the concensus is that the treatment is the same - botox plus medication. He strongly endorsed the tetrabeazine recommended by the UK neurologist, and of course I can get that in the UK without difficulty. I'm now 8 days into a gentle build up of tbz, with doses still very low, but I'd say based on results so far I'm cautiously optimistic. I'll report back further when I've had more days on it and at the stronger dosage I'm working up to. PBD. |
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Posted by: PattiA ® 02/20/2004, 18:19:43 |
I am wondering how much TBZ you are working up to? I am taking a very low dosage and it hasn't affected my BEB, but it has certainly improved my throat and breathing spasms. My neuro had said that it might improve my BEB, but so far it has not, and I'm thinking I might need a higher dosage. Thanks. ~Patti in Houston |
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Posted by: PDB ® 02/22/2004, 22:21:23 |
Will work up to 3 tablets per day (0.25mg each I believe, can't read the bottle too well, maybe it's 25 mg?)). currently at half that level, and feeling slightly off the pace on concentration etc - on the other hand I've just flown from NY to Tokyo, so jet lag may be a contributor. I'll give it a day or two and see how I settle in. I will say a little more confidently than in my previous post that it is helping me. Peter Modified by PDB at Wed, Feb 25, 2004, 01:57:18 |
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Posted by: PattiA ® 03/09/2004, 23:49:23 |
Peter, thank you for the info concerning your TBZ and clonazepam dosages and also the updates regarding changes you are experiencing as you adjust dosages. This type of info is helpful. I am on a very low dosage of TBZ -- just two halves per day -- and would like to take more but I'm having terrible anxiety and restlessness that I attribute to TBZ, even that small amount. The low dosage is helping my throat spasms, but not my eye spasms. I'm thinking I might possibly get some help there also with a higer dosage, but I'm reluctant to do that given the level of side effects I already have. I would certainly be interested to hear what sort of side effects others who are taking TBZ are having. Thanks again. ~Patti in Houston |
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Posted by: pdb ® 03/13/2004, 12:36:36 |
I can summarise now that I've had another period of time with tbz. 1) it no longer seems effective at all I'm up to 3 tabs per day) and I just basically get strong spasms much of the time. 2) I get headaches from it 3) I'm having trouble getting more than 4 hours sleep, before I become very awake, and can't do mcuh about it (I used to sleep lots of hours no trouble). 4) I have more apraxia than when I started.
Conclusion: time to get off it I think. Back to botox and Clonazepam. Peter |
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Posted by: PDB ® 03/23/2004, 16:07:28 |
a while since I posted on this. I've mostly had misery with it - tiredness, inability to sleep (nice comb that), inabillity to concentrate, aprazia when no spasms, good solid periods of spasms - and three days of complete blissful relief, follow by the sos. Found a web site that said if it didn't work in 7 days, it wasn;t going to.I'd go wtih that. Haven't had access to a Dr to talk it through - any experts out there on tbz can andwer this? Peter |
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Posted by: PDB ® 02/25/2004, 02:01:53 |
Can now say I've definitely had a major reduction in clamping and blinking. I've backed off the Clonazepa somewhat - and I think I over did that because some blinks began after a few hours, but doing the half tablet of each at lunch time put it back under control. So I'm now doing half a tab of TBZ with breakfast and lunch, and a full in the evening; have backed off to two halves of clonazepam. Will move to a full tab in the morning and a half clonaz at lunch in a day or so. Promising. Peter |
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Posted by: PDB ® 02/28/2004, 21:54:57 |
basically went backwards over the last few days - not so much in blinking and spasms but in eyes wanting to close, unclarity of vision, and what I'd call secondary side effects of the medications. Long haul flights every couple of days have not helped, and I'm looking forward to a period of one place, consistent environment to try to build a real pattern from what's going on. Right now it's a mix of optimistic and depressing, which some of you may understand. But no real conclusions to be derived just yet. PB |
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Posted by: pdb ® 03/05/2004, 00:18:58 |
More or less a week later, a few more long haul flights, but similar results - good effects on stopping uncontrolled movements, but eyes tend to want to stay closed all the time. Not sure this is the right result.
Does botox on top of this help with the apraxia-like eye closures I wonder as I am way beyond the end of useful life of my last botox shots. Peter |
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Posted by: PDB ® 03/07/2004, 13:07:24 |
This stuff clearly gives me a heaadache. I haven't had a headache in years, but with this stuff as I build the dose the headaches come on - and they're not even on the liist of side effects I've seen for it. Still have far too much apraxia, but if I back off the tbz the spasms come back really quickly. |
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