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| Have you tried ice packs behind your ears? |  | ||
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Posted by: tatia ® 10/17/2012, 14:33:32 |
I was reading a list of tips for dealing with BEB. One section related to heat and cold. All the tips are related to placing heat and cold on the eyelids themselves. I have found it soothing on my blepharospasm to use ice packs placed just behind my earlobes, behind/above the jaw, near where the skull joins the neck, on the sides. I found this by chance, and don't know the mechanism why it helps me. One theory: the seventh cranial nerve exits the skull near this point. So I was wondering if anyone else has tried this, and do you find it helpful? Or is this another one of the things that makes me a freak OOPS I mean unique. If you've never tried it before but want to give it a shot and tell me your results, good bad or indifferent, I'd love to hear them. Thanks,
Modified by tatia at Wed, Oct 17, 2012, 17:09:29 |
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Posted by: bjd ® 10/17/2012, 21:39:52 |
I haven't heard about using ice packs. However, for a couple years before having a diagnosis, I had found that while driving in the hot afternoon, the spasms would start. of course back then I had no idea that they were spasms, all I knew was that I was getting extremely dry eyes and couldn't keep my eyes open. What I found helped and would give me a few more hours Was a big cold milkshake and a bottle of five hour energy, which is actually a heavy dose of B vitamins. I did it every day for a long time. I don't know how it worked but the impression I got was that it was the cold milkshake working on the back of my neck and throat. I also drove several hundred thousand miles in my work with a big cold wet rag on my head and a hat on top to not look like a dork. I can't tell you how desperate and crazy I was not having anyone who could even have a clue what I going through. I went through the stage of being suicidal because I new I was sick, depressed and no answers from anyone, not even an excuse for myself. I found myself unable to hold down a regular job and no verifiable excuses, just sick , but how do you tell someone you are sick when doctors fix a little something and say you are fine. Turns oit I also have cervical and generalized dystonia, so now my eyes are just a small portion of the trouble. I think the estimates on how many years and doctors people can go through without a diagnosis is even still underestimated. I think we are losing people who give up in dispair and were never diagnosed. Brad
Modified by bjd at Wed, Oct 17, 2012, 21:44:31 |
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Posted by: LeAnn ® 10/18/2012, 14:15:11 |
Brad, it was a good day when I saw your post. Cervical and generalized dystonia as well as BEB not good to read that. LeAnn |
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Posted by: tatia ® 10/21/2012, 11:50:00 |
Brad and sd_eds, Thanks so much for the cold food input. Brad I think you are exactly right about the milkshakes/ice cream being a similar effect. Ice cream helps me too, and sometimes I also just drink ice water as cold as I can possibly get it. Brad, I think of you often and hope you are coping well. I know it's been so difficult for you. Tatia
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Posted by: Norah-Jean Perkin ® 10/17/2012, 22:21:05 |
I've never tried ice packs behind my ears, but before I started Botox shots, and sometimes even then, I would get a head ache starting right behind my left ear and down my neck. I got it often enough with the bleph symptoms that I thought there was some connection, but I never did much about it beyond putting a hot wrap around my neck. That helped while it was on, but not once it was removed. I'll have to try something cold and see how that works now that I'm going without Botox for at least six months. Norah-Jean Brad, that sounds awful what you went through trying to keep up your ability to drive. I'd laugh about the wet rag under a hat, but it's not really funny ha ha, just a mark of how desperate we all get to make anything work, and laugh about the dumb things we do so we don't fall apart. Laughing is far superior to falling apart, in my books, no matter what crazy thing you're trying. God bless you. |
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Posted by: tatia ® 10/21/2012, 11:42:40 |
Thanks, Norah-Jean, That kind of headache is exactly how I "discovered" this trick. And like yours, mine often coincides with the bleph symptoms. Thanks for sharing your experience so I can feel confident this is something that can go hand in hand with blepharospasm. I hope you do okay for your long stretch without Botox. Tatia |
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Posted by: thea ® 10/18/2012, 03:47:03 |
Ice packs used to help, but I have not tried it for a while. My apraxia problems are worst when walking, and it is too much hassle to cool down when walking. I also have problems walking, with coordination, brainfog etc. but still have no diagnosis.
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Posted by: sd_eds ® 10/18/2012, 08:19:53 |
I have noticed that when I have ice cream and eat it rapidly (brain freeze!) my symptoms almost disappear and Im able to focus and nearly feel normal. I have not tried ice packs behind the ears but it sounds similar in principle. At least its zero calories. |
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Posted by: inar ® 10/18/2012, 11:21:23 |
What way to be cured;) Ice cream!!! Who knew? Just in the spirit of the fall season lets start with EDY's Pumpkin ice cream . Amazing . Tastes just like a pumpkin pie. |
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