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Posted by: Kygal ® 07/26/2013, 14:50:29 |
I would love to read some of your stories about when and how you first got BEB and how it progressed. |
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Posted by: Judy from Toronto ® 07/26/2013, 18:47:17 |
10 years ago my brother asked me "why do you keep closing your eyes?"I told him, I did not notice, but probably it was because I was not getting enough sleep. Within the next year I developed severe photophobia and my eyes kept closing, had trouble opening them, could not watch T.V. drive and kept bumping into things. I never did have rapid blinking. I was seen by my G.P. a neurologist, an optometrists, 3 opthalmologists. All told me that they could see some blepheritis. A second cousin, who is a neurologist heard about my problems, she did not see me, just diagnosed me over the phone. Once I knew what was wrong, it was easy to get to a movement disorder specialist, who confirmed the diagnosis and started botox injections. I-am having 80 units of botox every 3 months and really feel that the condition is under control. Driving is limited, but apart from that I-am o.k. most of the time. |
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Posted by: sb ® 07/27/2013, 07:23:03 |
Hi my blep started 3 years ago, trying to find out why is a hard one .when i turn 50 i got menapause and got depression and angsiety attacks they put me on zanax within 3 months i had blep dont know if it was the zanax or menapause or my destiney. Iam suffering, eyes shut all the time even with botox the doctor nuro up the dose to 70 got a dropy eye, 1 month later still have it. Last time i got a droppy eye it lasted about 2 weeks, have had shots and they worked well that was once in three years, I beleive the place they put the shots is the key as well as the correct dose, hopping for the day they get it right.life is a battle in the day i have to lay down and rest my eyes or they go crazy, socialising is very hard for me if i have to listen to people my eyes close or blink, if Iam talking its ok. go think. Anyway hope they find a cure but with so little money or reasearch being put into this conditon I might be dead before they find a cure. Hopeing some one with a high profile gets it then maybe something will be done, but then again I WISH THIS ON KNOW ONE. |
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Posted by: sue in orlando ® 07/28/2013, 06:02:30 |
Hi, I had a bad case of bronchitis a year ago, was put on medicine after medicine. I also brought the dog in the house and I am allergic to him. Anyway, this past oct, my eyes began shutting while I was driving. I thought it was funny actually. I thought I was just tired. However, it persisted, I thought I was losing my mind. I went to 2 opthamologist and a cornea specialist. both said it was dry eye. they put plugs in. I googled it and found blepharospasm. so basically diagnosed myself. started botox in jan and am able to manage it though botox. I am 48 and have not even started menopause yet, not sure why it came to me. It is not in my family, we are all healthy. Have really been wondering how it happened and why there are only a few handfuls of us out there and no known "celebrity". of coarse, doctors do not know anything but will gladly issue botox. I cleaned the dog room yesterday and my eyes went crazy, I could barely see. so weird to think that a year ago, I had no problems. sue :) |
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Posted by: Kygal ® 07/28/2013, 07:25:51 |
Thanks for all your stories. I am thinking (from what I am reading) that this disease doesn't always start the same way. My eyes just started fluttering and would not stop. Now when I close my eyes or blink they go to town. ALWAYS... except when I sleep and even then I have been woken up with them fluttering..... about 4 times since my started in March. I know this is not usual with sleep....or is it? If I look sideways they start. So far I have had one episode of not being able to open my eyes. I am feeling blessed with reading your posts that mine has not gotten worse with closing. Has anyone had BEB and it not get so bad for the botox? Thanks again I do get answers by reading all your posts.........keep them coming. |
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Posted by: noonsmom ® 07/30/2013, 16:09:55 |
Sue -
I am one of those who believes that there are allergic components to our BEB. That being the case, many of us take some form of antihistimine with some success. In another thread, Jann said she takes low dose Benedryl and sudafed. Benedryl would put me to sleep, so I take Allegra-D -which is Allegra and Sudafed combined. Sometimes I take Singulair which also does not make me sleepy. Speak to your doctor, or try it yourself - most antihistimine compounds may be bought over the counter without Rx. You may be allergic to that doggy. Marcia |
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Posted by: xycon13 ® 07/31/2013, 20:57:42 |
mine started about 8-9 months ago. It started out pretty minor, got worse little by little. It started getting pretty bad around 4-5 months ago. I hate going out as it is, and this just makes it worse. School was horrible. I can easily say my freshman year (I'm 15) was the worst year of my life so far. |
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Posted by: judith k ® 07/31/2013, 21:35:50 |
Oh my,
you are only 15! So sorry to hear about this. But you are fortunate in having gotten diagnosed—there are people who go on for 15 years before finding out what's wrong with their eyes. How did you come to be diagnosed, and what treatment are you getting?
Take care, Judith K |
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Posted by: In Indiana ® 08/01/2013, 05:46:10 |
I am so sorry that you are dealing with this at such a young age.
I'm fairly certain that you have blepharospasm secondary to something, and it's a matter of figuring out what that something is. If you tend to see a pattern of when/where the spasms are the worst, that could mean something. I have a son who is 15. He was diagnosed with blepharospasm at 10 and needed Botox for three years. I'll tell you what has worked for him, in case it might be helpful for you. He does fantastic now. He was originally diagnosed with an sodium ion channel disorder, which seems complicated and I won't go into details unless you ask, but lots of people have ion channel disorders. Migraines, epilepsy, possibly ADHD, sensory processing disorders, etc. all have ion channel components. -His B12 level was extremely low. He gets B12 shots monthly. B12 is necessary for nerve/muscle function, and low levels can cause muscle spasms and nerve damage. The CDC recommends that anyone with an unexplained neurological issue be tested for B12 deficiency, so if you haven't been, it's important that you get tested. -He takes a multivitamin with B complex (B vitamin deficiencies tend to go together, since the B vitamins are absorbed in a similar fashion. A riboflavin deficiency can cause light sensitivity and surface eye burning/discomfort). -His vitamin D level was low. He does get a vitamin D supplement that is in the multivitamin. Some people just can't absorb vitamins like they need to. Please make certain that this has been addressed with your health care provider. Also, some people tend to eat only certain foods, and over time, they don't get enough of some essential nutrients. A program like myfitnesspal can be used to track intake and help pinpoint missing nutrients. -He is prone to tics/migraines. He avoids known triggers for these (chocolate, artificial sweeteners, artificial colors, artificial flavors, etc.) -He takes a small dose of an anti-seizure medication (Vimpat 100 mg) every morning. -He gets a lot of exercise With this routine, he hasn't needed Botox for almost a year and a half, and has done very well. I can't tell you what has helped the most - it's been a combination of a healthy diet, exercise, proper vitamin levels, finding good ways to release stress (being with friends, doing fun activities, talking), and I do think the Vimpat has helped as well. I hope that you find things that help you soon. I want to make certain that you know that there's hope, and that it can get better. Finding ways to "settle the brain". Yoga, meditation, and mindfulness may also be helpful. If you need hints regarding how to survive school, please let me know. I'd be happy to post ideas regarding what your IEP should say. Hopefully you've already found Dragon naturally speaking and have a reader capability on your computer, but if not, those could be helpful. Online classes may be helpful for a short while until you get to feeling better - something to think about if the florescent lighting is really bothering you right now. Best wishes - we're here to help! It can get better. In the mean time, hang in there. We know it can be rough, and it's very difficult for people who don't have blepharospasm to understand how difficult it is. We do - hopefully you can find support and ideas here. Sorry you have this, but glad that you found this site. |
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Posted by: sue in orlando ® 08/01/2013, 10:04:59 |
Hey, In Indiana had great positive feedback for you. Just think positively because you are young and hey, it may just be temporary for you. As Indiana said about her son, he is much better. I go to school too with 18 year olds (Im 48 and finishing my AA). You can control this, just relax and focus. dont let it run your life - we all have this and we all have a life with school, work, kids, stresses. You will be just fine. Just take each day one day at at time. I think since you dont like "going out" anyway, this is good time to stay in and take care of yourself first. I had to do this. For months, I just stayed home learning how to manage it. Then once I calmed down and figured it out, I slowly added things back in. As for school, there are just some things you cant stay away from. for me it was school and work. I got some cool glasses for the glare in the school (my eye doctor got them for me - non prescription). Also, I told my teachers that I was light sensetive right now and they were more than happy to turn the lights down for me. At work, (I work in a hospital) I walk into beds in the hallway, I walk into trash cans. When I go outside and run, I run off the sidewalk and trip. Oh well, I laugh about it. I see kids with alot worse issues than what we have so I think about that and am thankful that this is all I have. Take control, you can do this! You have the power to be an inspiration to many kids! There are some great inspirational books to read like biography about lauren scruggs a young girl that was hit by a propeller of a plane, she lost her whole eye and half her arm but is not letting life get her down. Her book is called Still LOLO. Also a book called Life without Limbs. About a man that was born with no arms or legs. He is a huge inspirational speaker and he just got married. Wow, God is good! sue :) |
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Posted by: antigua ® 08/01/2013, 14:53:54 |
Thank you for your encouraging letter! I need to reread it every once in awhile to realize that I have control and not the BEB of my life! Humor can get us through anything, we just have to remember that we have it! Antigua |
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Posted by: lisao ® 08/01/2013, 23:52:28 |
Hi, I think what Indy says is all great. Maybe there will be tests that show deficiencies that, if corrected, will help you a lot. It sounds like meditation and relaxing would be especially helpful for you. When you say you hate going out, I wonder if the stress you feel about that might be making your eyes worse. Daily meditation can help with that - make you feel more relaxed generally. If you want help on how to practice meditation, Jon Kabat Zinn has great audio recordings of guided meditations. My library has them so yours might. In terms of school, this might sound crazy but if you have trouble walking, try reading something as you walk. I read my iphone and it lets me walk without spasms. (My hope is that by doing that a lot, I will train my brain to stop associating walking with spasms.) The other thing I notice is that when I take notes in classes, I don't get spasms while listening to the teacher, even though in other listening situations I do. Somehow when my brain is occupied with writing, it doesn't react to listening (my worst trigger). I am seeing a Spanish doctor named Joaquin Farias who just started working with bleph patients a year ago. Before that, he was treating focal dystonias (similar to bleph but in other parts of the body) in musicians for many years. He has helped many musicians recover completely from their hand, laryngeal, lip, and other dystonias. Recently, I met one of his first bleph patients, who used to have spasms all the time and is now doing MUCH better. I had lunch with her and went for a long walk, and she seemed totally normal. She said she still has problems sometimes but hopes to be 100% better eventually. I myself have begun to improve, too. For 3 years, whenever I went running I had to struggle to keep my eyes open even a slit; now I can run for 6-7 minutes with my eyes open - and I expect to be able to run further as time goes on. I also couldn't watch TV without spasms but recently I have watched for hours (on my iphone) with no spasms. This doctor's approach involves retraining your brain by finding ways of inhibiting spasms as much as possible, so your brain gets used to not spasming. I think there are a couple of other doctors using similar approaches with musicians (musicians are especially prone to the problem), and I hope that eventually many doctors will try this approach with all dystonias. Finally, I should mention that I know someone whose nephew got bleph when he was even younger than you, and a few years later, it went away on its own. I have also talked to an adult who experienced the same thing - her bleph just went away after a few years. (I don't know about the boy, but I think the adult worked hard on relaxing, eating well, getting exercise, and getting lots of sleep. My Spanish doctor feels that good sleep is really important.) So please don't give up hope. Keep coming to places like this board to learn more about bleph and get ideas about all the options you have. |
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Posted by: pdb ® 08/02/2013, 17:27:11 |
When specialists have discussed early age onset of blepharospasm in the past, the comment has been that it usually goes away after a while. I don't know the definition of "after a while" but hopefully for you too it will go away with time. Peter |
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Posted by: lisao ® 08/02/2013, 01:41:03 |
My husband noticed I was squinting a lot. I asked my eye doctor if I needed glasses. He said no, so I let it go. A year or two (or more?) later, in the fall of 2010, I was at a conference and noticed that each evening when the group met for drinks, I had trouble with my eyes when I listened to people. The rest of the day was fine. Within a few months, I was having trouble doing other things, too - walking, jogging, driving. I asked my eye doctor if my eyes were dry - I kept feeling like I needed to rub them. He said no. The condition progressed, and I asked my eye doc about it again. By now, he could see it happening and said he thought it was definitely neurological because my eyes were fine. I went to a neurologist who told me it was anxiety - nothing could be done. I eventually googled and found out what it was myself. I went to another neurologist (who accepted it when I told her I had bleph but did not seem to know much about it) in order to get referred to the botox-injecting doc in her office. I met with him, but he didn't inspire confidence so I didn't try it. Finally got a recommendation for a good botox-injecting neuro and met with him for a diagnostic appt. He confirmed I had "classic bleph" and made a date for botox. But I never got the botox because in the meantime I had learned of and made plans to see a doctor who had helped many musicians recover from focal dystonias (same as bleph but other parts of the body) through neuroplasticity therapy - training the brain. No drugs. (Dr Farias) I wanted to try his approach, so went to see him in Spain. I am still working with him and have seen some improvement. (Recently, I have been able to run with eyes open for 7 minutes, and to watch TV on my iphone for hours.) Others who have been seeing him longer have seen more improvement - I just had lunch with a woman who had bleph for years and now looks totally normal to me, though she feels she has a ways to go. We all hope to be 100% better eventually, but the therapy is gradual. Might take me another year or two, or more. I am in it for the long haul and feel very optimistic.
Modified by lisao at Fri, Aug 02, 2013, 01:46:40 |
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