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| | (1 recommendation so far) | Message 2 of 11 in Discussion |
| | From: juds | Sent: 4/3/2008 3:42 PM |
Yes, Mel, several of our members have tried botulinum toxin/botox injections in their superior oblique muscle. Hopefully they will pop in to share their experiences. For myself, I seriously considered using this treatment, but was discouraged by reports that it was likely to be effective for only a short time, just a few months. One of our members reported that it also caused short term paralysis of her eyelid. That alone would not have kept me from using it, but my insurance would not cover it and I would have had to pay the fee every few months, which I cannot afford. I reorganized our abstracts section a while ago, and gave each topic or discipline a separate page. All abstracts can be found here: The page for botulinum toxin/botox can be found here: Additionally, I just found another abstract last night, and have leads on several more concerning this potential treatment. The full article, for the abstract that I found yesterday, does not have a direct link, so you will have to click on the link for the full article. It is a PDF document, which I have used without any problems. When you get to that page, look on the right-hand side of the page, near the top and here is where you can find the link to the full article on that page: I will be working on the abstracts pages sometime this coming weekend and will let everyone know which sections have been updated. |
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Thankyou I have printed out the articles and will read them. I will bring them to the neurologist on Monday, but if anyone who has had it done would like me know how it went I would be grateful
Superior oblique myokymia <[email protected]> wrote:
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| | | From: juds |
Yes, Mel, several of our members have tried botulinum toxin/botox injections in their superior oblique muscle. Hopefully they will pop in to share their experiences. For myself, I seriously considered using this treatment, but was discouraged by reports that it
was likely to be effective for only a short time, just a few months. One of our members reported that it also caused short term paralysis of her eyelid. That alone would not have kept me from using it, but my insurance would not cover it and I would have had to pay the fee every few months, which I cannot afford. I reorganized our abstracts section a while ago, and gave each topic or discipline a separate page. All abstracts can be found here: The page for botulinum toxin/botox can be found here: Additionally, I just found another abstract last night, and have leads on
several more concerning this potential treatment. The full article, for the abstract that I found yesterday, does not have a direct link, so you will have to click on the link for the full article. It is a PDF document, which I have used without any problems. When you get to that page, look on the right-hand side of the page, near the top and here is where you can find the link to the full article on that page: I will be working on the abstracts
pages sometime this coming weekend and will let everyone know which sections have been updated. | |
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Melanie, I don't know how relevant this is, but I know some neurologist do suggest botox for SOM; however, my SOM started within a month of botox injections for migraine headaches, and there are now studies coming out that suggest botox can travel to the brain. I don't know if the botox caused my SOM; but it can cause muscle/nerve damage, and I feel that the initial botox for my migraines may have affected my muscles. or you can just google - A New Reason to Frown - Newsweek Health I haven't used the botox for SOM, but I would be really hesitant. Just my two cents. Nicola |
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| | | From: juds | Sent: 4/21/2008 10:06 PM |
Nicola, thanks for an additional perspective on the use of botulinum toxin. Have you pursued any of your thoughts with your doctors? It would be very interesting to hear more about this from you, and I am hoping that you might share more with us. When I first read some of the studies referenced in the Newsweek article, it wasn't clear that most (and now it seems that all) of the deaths were related to medical procedures, as opposed to purely cosmetic ones. Even given the most recent refinements of these reports, I have been unable to find information detailing the specifics of the injection specifics. Perhaps those variables are inconsistent with decent reportage. I believe, and this is a completely personal opinion here, that we are going to find that the transit of the toxin along neural pathways is going to be related to variants, and specific conditions, of how the injections were used. As for the use of neurotoxins for treating medical conditions, what we don't know still exceeds what we do know, particularly since each treatment protocol is dependent upon the skill of the physician and the unknowable and unpredictable condition(s) of the tissues so injected, although, the most recent studies seem to be moving in the right direction. Clearly, I find all of this fascinating, and more than a little sexy; and a big part of the appeal for me is that I really don't understand all of it. I just think that science is exciting.  Can't help it...always have. Just a hopeless nerd. |
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I have been referred for the Botox so i am waiting on a reply for it, they have also referred me for a mri scan (at last) I have waited over 3 years for a treatment to work. It is really debalitating which episodes happenening every 15 seconds. Some days i just go to bed really early because I can't cope with it. It has affected my social life, my work life and my love life. I am willing to try anything after being on so many drugs I care to mention. I had the SOM before I got any headaches these are only caused when the SOM is more violent and the pain is sore behind that eye only. I have researched it and have read the benefts and risks behind it (as there is which many drugs) but I am at the end of my teither and this seems the only option left for me if I am to gain any form of life back.
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| | | From: NicolaH2 |
Melanie, I don't know how relevant this is, but I know some neurologist do suggest botox for SOM; however, my SOM started within a month of botox injections for migraine headaches, and there are now studies coming out that suggest botox can travel to the brain. I don't know if the botox caused
my SOM; but it can cause muscle/nerve damage, and I feel that the initial botox for my migraines may have affected my muscles. or you can just google - A New Reason to Frown - Newsweek Health I haven't used the botox for SOM, but I would be really hesitant. Just my two cents. Nicola | |
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| | | From: juds | Sent: 4/22/2008 2:45 PM |
I am glad to hear that you have received this referral for treatment and, most especially, for the MRI. You really deserve to have some good news for a change. Whilst I am sad about how it has affected the work and social aspects of your life, it is most distressing to hear that it has also had a negative affect on your love life. Horrors!!!!! Not having one of my own, love life that is, I can only imagine how terrible that must be for you.   You know that all of us wish you well in the coming weeks. Keep us posted, if you like. I have e-mailed you. |
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Initially when my eye started spasming, I went to an optometrist, and he suggested that it was the botox. He said only time would tell. Then the Neuro Opthamologist at UCIrvine, CA also thought that the spasms may have been caused by the botox. After 6months when the spasming didn't stop, that was when the neuro starting doing MRI's etc.. to see if I had MS or a brain tumour. I have seen lots of specialists that have recommended botox to see if it would help with SOM, but I do have one Neuro that doesn't shut me down when I suggest the botox as the culprit for my SOM. With all drugs, there are benefits and downfalls. Perhaps botox may help. I also have some tingling in the right side of my face that may or may not have to do with SOM. All of my MRI's show that there is nothing wrong with my brain. No one has an answer why my eye spasms or why I sometimes get facial tingling. I guess for all of us it just sucks! When my eye gets really bad, I put a patch on that eye. Nicola |
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| | | From: juds | Sent: 4/23/2008 1:04 AM |
Thanks, Nicola, it sounds like you had a rough time getting to a diagnosis, like so many of us. Pretty much everythink about having SOM sucks, big time. Well, except for the times I used my symptoms to avoid having to attend some weird family thing. Then I was thrilled to have a legitimate excuse for staying home. Aaahhhh, sure do miss those days sometimes. It would be lovely to have one, or even just a dozen causes that could be identified for SOM, but there are as many as there are persons with this disorder. There certainly isn't any reason to simply dismiss your botox treatment as a possible cause for your SOM symptoms, and I am glad to hear that you aren't letting anyone bully you around regarding it. And, whilst no one else has yet shared the kind of facial tingling that you experience, it certainly does not mean that it shouldn't be investigated further by you and your doctors. Related to SOM or not, you shouldn't have to suffer with that as well. That whole issue of being shut down by a doctor (or other people, for that matter!!!) is one that I'm guessing that every single one of us has experienced in respect to some aspect of our symptoms or testing or treatment. I still have to patch sometimes, and my favorite these days in my rhinestone one. |
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| | | From: juds | Sent: 5/29/2008 4:11 AM |
Melanie, I've been thinking about you and wondering if there has been any progress on your referrals for the botox and MRI? |
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