|
|
|
|||
|
| Generalized dystonia and Blepharospasm? |  | ||
| Archive | |||
|
Posted by: maryhawk ® 02/20/2005, 07:37:19 |
My 14 year son has had generalized dystonia for the past few years, which has been worsening recently (I read this may happen during adolescence). His latest symptoms include headaches, his eyes "flashing" as he calls it and trying to close, and extreme sensitivity to light. This sounds to me like the symptoms I have read about on this website so I have a few questions. Does anyone else have generalized dystonia that includes blepharospasm? Does anyone else have a child with this? Do his symptoms sound like blepharospasm?
We have an appointment with our neuro later this week and will be checking these symptoms out more with him but since he sees so few dystonia patients, I wanted to check it out with those who have it. My son has said that when he is interested in or concentrated on something, it seems better. My husband gets frustrated because my son's symptoms often seem worse when it is time to go to school but if we allow him to stay home and he gets interested in the computer or listening to TV, he seems better. I think part of this may be due to the stress of school and from what I have read of not being able to control the environment there. Any comments, feedback or help? This seems like a supportive and active community--I'm glad to have found it. Modified by maryhawk at Sun, Feb 20, 2005, 07:38:02 |
| | | | Current page |
| Replies to this message |
| Re: Generalized dystonia and Blepharospasm? | | ||
| Re: Generalized dystonia and Blepharospasm? -- maryhawk | Top of thread | Archive | |
|
Posted by: Mary, upstate NY ® 02/20/2005, 08:25:53 |
Please accept my "understanding", sorry about your son's difficulties. I can only speak to two things - It's hard enough having teenagers (I had five at the same time) without haaving to go through this. The other is, as a blepharospasm patient, I know that when I (and , mostly, we) concentrate on something, like a task at hand, the eyes are better. And sensitivity to sunlight or bright lights is very common. I hope you can find answers from your neuologist. Mary |
| | | | Where am I? Original message Top of thread Current page |
| Re: Generalized dystonia and Blepharospasm? | | ||
| Re: Re: Generalized dystonia and Blepharospasm? -- Mary, upstate NY | Top of thread | Archive | |
|
Posted by: maryhawk ® 02/20/2005, 08:29:40 |
Thanks for the response. He talks a lot about how some places such as his school have "white lights" that are harder on his eyes. I'm wondering if that is the flourescent lighting? |
| | | | Where am I? Original message Top of thread Current page |
| Re: Generalized dystonia and Blepharospasm? | | ||
| Re: Generalized dystonia and Blepharospasm? -- maryhawk | Top of thread | Archive | |
|
Posted by: Anita in Ohio ® 02/20/2005, 10:37:47 |
Regarding your 14 year old son, I have seen only a few at this age with blepharospasm, but that does not mean that he may not have it. I'm really sorry to hear of his discomfort. I have blepharospasm (which is spasms in both eyes)and I'm extremely light sensitve (photophobia). I'm might suggest that you contact our BEB Foundation and ask for even an ophthalmologist that is in your area and knows how to make the proper diagnoses or you could contact your District Director for BEBRF and they could refer you to a doctor. The e-mail for the Foundation is: bebrf@blepharospasm.org My concern is his reference to eyes flashing. I hope he isn't seeing flashing lights. Maybe, his eyes are blinking or spasming quickly which will impair your sight and can't see as well. Lights in a store will bother me and I have to wear tinted glasses and prior to Botox injections I had headaches. In your home, using a pink color GE light bulb will help. Most of us have found that if you focus on something, it may help but then if the spasms are really bad, sometimes nothing helps and you have to get Botox injections. Also, I want to mention that there are times in the early stages where you may have days or moments when the eyes don't seem to bother you and then out of no where, you can have moments and days that they really hurt and bother the person. Not knowing where you live, I can't refer you to your District Director and I don't know if you are a membe of our BEB Research Foundation, Inc. You can also call the Foundation at 409-832-0788. I hope this might help. Anita Croce, North Central District Director, BEBRF |
| | | | Where am I? Original message Top of thread Current page |
| Re: Generalized dystonia and Blepharospasm? | | ||
| Re: Generalized dystonia and Blepharospasm? -- maryhawk | Top of thread | Archive | |
|
Posted by: judith k ® 02/20/2005, 12:40:17 |
Hi,
I have BEB, for which I get botox, and also benign essential tremor (which I never noticed till I was diagnosed with BEB) and something called paramyotonia congenita. Sunlight and fluorescent lights are murder on me. Botox helps the spasms but has not decreased the photosensitivity. Re your husband saying your son's symptoms seem worse when it is time to go to school but if you allow him to stay home and work on the computer or watch TV, he seems better-- that sounds EXACTLY like me: except I don't go to school as a student but as a teacher. Staying at home and working on the computer or reading is 'safe', and often (before I ever started on the botox) I didn't have any symptoms at all if I stayed at home and could control what I was doing, the lighting situation, etc. At home, you are, as you say, 'in control' of your own environment, and also you don't feel on display or self-conscious. The stress factor--and feeling self-concious is very stressful--is huge. So it's entirely understandable to me that your son feels this way, whatever the cause of his 'flashing' eyes and sensitivity to light. Also, looking down (as when you are using the computer, or reading) is much better than looking up, or even straight-- I discovered that there is a sort of 'ceiling' in classrooms (with a very small class that sits close to me, I don't have to look up very far, and if the lights are on it isn't too bothersome; if it's a large class where people are some distance from me, it's much more bothersome). Unfortunately, there seems to be a huge amount of fluorescent lighting in institutions-- and some of it is particularly brilliant, and sometimes there are fixtures that seem to multiply the fluorescence. I wear light sunglasses all the time in school, and that helps. (If anyone asks, I say I'm sensitive to light.) I turn off the lights in the classroom in the daytime, as long as it isn't too dark outside (since I'm in charge, I'm lucky to be able to do this). Maybe your son could wear tinted sunglasses and a hat with a bill; if the hat seems rude (depends on what part of the country you are from; where I am, students routinely wear caps like that), that might help him too. Does your son play Nintendo or anything like that? There are warnings about neurological disturbances having something to do with neural/light impulses... Good luck! Modified by judith k at Sun, Feb 20, 2005, 12:46:35 |
| | | | Where am I? Original message Top of thread Current page |
| GD & BEB ... | | ||
| Re: Generalized dystonia and Blepharospasm? -- maryhawk | Top of thread | Archive | |
|
Posted by: Moderator-JB ® 02/20/2005, 12:40:42 |
Hello, We're so sorry to hear that your son has these problems. That, however, is not a help to you or him. You need information and he also needs to have the opportunity to talk with friends his own age with the condition. He may indeed have BEB. It sounds very similar to what we experience. Not being doctors, we cannot diagnose. If you will follow this link to the Dystonia support group online, you will find many helpful areas, including a section for teenagers. http://www.dystonia-support.org/ Another contact for you is a moderator for the main Dystonia Bulletin Board, Jeff. His son has generalized Dystonia and may be a very good help to you. Sincerely, Judy Blackman
Modified by Moderator-JB at Sun, Feb 20, 2005, 12:44:38 |
| | | | Where am I? Original message Top of thread Current page |
| Re: Generalized dystonia and Blepharospasm? | | ||
| Re: Generalized dystonia and Blepharospasm? -- maryhawk | Top of thread | Archive | |
|
Posted by: Lynn Yarbrough ® 02/20/2005, 15:19:26 |
Hi. If you have been reading the stuff on this forum you probably have seen something that strikes a chord. Here's one you haven't seen here yet: The 'flashing eyes' may be a symptom of vitreal separation -- the separation of the vitreous fluid in the eyeball from the retina -- sort of an air bubble formed inside the eyeball. I had this a few years ago and had it treated (don't recall how) but it is not related to BEB in any way that I have heard of. The primary effect of the separation was a bright white arc of light in the outer edge of the field of vision in one eye. At first my optho thought it might be retinal separation, which is much more dangerous, but it wasn't. The primary symptom of BEB is the unremitting, spastic eyelid closure, usually for several seconds. The closure is one source of photophobia -- the iris opens when the lids close for more than about 2 seconds, so the retina gets overexposed when the lids reopen -- but not the only cause, we are told. Whatever the root cause of BEB -- and it is not known -- stress agravates it. So helping your son to recognize the sources of stress in his life, schoolwork or whatever, and how to deal with them, will be very beneficial. With the variety of things that might be wrong with your son, I think it's prudent for him to get a thorough exam by an opthalmologist and/or a neurologist, preferably one who has some prior experience with BEB. Check the BEBRF site for a list of references in your area. Good luck! --- Lynn
|
| | | | Where am I? Original message Top of thread Current page |
| Re: Generalized dystonia and Blepharospasm? | | ||
| Re: Re: Generalized dystonia and Blepharospasm? -- Lynn Yarbrough | Top of thread | Archive | |
|
Posted by: maryhawk ® 02/21/2005, 13:33:20 |
Thanks all for the responses and the concerns. We did go to an optometrist last week and have an appointment with our neurologist this week about these new symptoms. I appreciate you all taking the time to share your knowledge and experiences.
Mary |
| | | | Where am I? Original message Top of thread Current page |
| Re: Generalized dystonia and Blepharospasm? | | ||
| Re: Re: Generalized dystonia and Blepharospasm? -- maryhawk | Top of thread | Archive | |
|
Posted by: Sally in South Carolina ® 02/22/2005, 14:37:55 |
Hi Mary: I'm so sorry to hear of your son's problems. His "flashing lights" could also be ocular migraines. I never, ever had migraines nor did I ever have many headaches in my life, but right before I was diagnosed with BEB & several times since I would have these spells where I would have what I called a "light show" going on to left of my left eye. They were shaped like a lightning bolt & just dazzled & flashed for awhile & then would go away. I have since been told by the drs. that these were ocular migraines. They only come once in a blue moon & they never last more than 30 minutes, but usually alot shorter than that. I have never gotten a headache from them either. Just another avenue for his "flashing lights." Good luck at the drs. next week. Sally in South Carolina. |
| | | | Where am I? Original message Top of thread Current page |
