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Posted by: ConCatLin ® 04/19/2013, 18:48:29 |
Hello, I was diagnosed with blepharospasm a few months ago. So far, Botox treatment by my ophthalmologist has helped some, but not entirely. At least I can drive without one hand over one eye. I know it takes a few treatments to tweak the dosage, though. My job involves staring at a computer monitor 8 hours a day. This is when my eyes are the worst; even worse than driving. Am I making the condition worse because of the kind of work I do? Also, I have frequent spasms in my cheeks. They feel fairly strong and are very annoying. And sometimes my jaw seems to spasm a little bit, and my teeth click together. Is this part of blepharospasm? To me, it doesn't sound like either blepharospasm or Meige, but like something in-between. My doctor mentioned it might be Meige, but didn't say anything else last time. She did say she wouldn't give Botox outside of the eye area or I might end up with a droopy face. Does anyone get Botox in the cheek area? I am wondering if I have to live with these cheek spasms with no relief. Thanks in advance for any info you can give. |
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Posted by: Susi ® 04/19/2013, 21:29:46 |
Sounds like you might need to find a neurologist or neuro-ophthamologist who will be willing to inject beyond the eye area. My neuro-ophth injected at the side of my nose, my cheeks and around my eyebrows as well as the eye lids. Blepharospasm can spread to other areas and I think that is called Meige. Why do you think the other spasms aren't bleph or Meige? It all sounds like dystonia.If the Botox helps your eyes you might have good luck with injections for the other spots.
Do you have dry eyes? Working on the computer, you might not be blinking enough. Do you use eye drops? There are others here on the forum that can give you advice about the computer issues. I am sorry that you have to have this disorder. Susi |
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Posted by: ConCatLin ® 04/20/2013, 08:18:58 |
Thanks, Susi. I have been reading a lot about eye and jaw spasms, but can't find much about spasms that affect the cheeks and nose. The Botox is not helping my eyes and face enough yet. I blink and spasm a lot at work, making it impossible to be productive. I know that if I didn't have to be on a computer all day,my symptoms would be cut in half. But I must support myself, have cancer, and have to work. (And, ironically, to get support, I have to be on the computer again!) I have a long history of eye dryness, but have been on Restasis since January, and my eyes don't feel dry now. I am in the south suburbs of Chicago and don't know how to find a neurologist that specializes in this. He or she would have to be local, as I don't feel comfortable driving any distance, especially on Chicago expressways! |
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Posted by: diane48 ® 04/20/2013, 12:31:56 |
True, your current injector, an ophth, would not inject in areas other than around the eyes. But a neuro most certainly would. You're early on in your Botox treatment.
You may have Meige/OMD (oromandibular dystonia), affecting the lower face, & your future neuro may diagnose it as such. Also, below is a link to a comment from Judy our Moderator about how injections help her in the TMJ area. Regarding your computer, there have been numerous discussions about coping techniques. One is changing the resolution of the screen background light, from bright to less bright. Also tips on enlarging the font on the texts you're viewing & working on. These past discussions are in the clickable Archives option at the top of this page. Also, you can email or phone the BEBRF office for an information packet, & also ask about any recommendations for a neuro in your area. You can also email Anita Croce for a neuro recommendation, as she herself has BEB (& possibly Meige/OMD?) & also oversees the support groups in Illinois, & may have word-of-mouth neuro recommendations from them, & can maybe guide you to a support group in your area of south Chicago.
Related link: http://www.blepharospasm.org/forums/beb/posts/91006.html Modified by diane48 at Sun, Apr 21, 2013, 08:13:49 |
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Posted by: diane48 ® 04/20/2013, 12:54:36 |
Below is one of many discussions about what some refer to as bunny nose, that is, involuntary scrunching of the nose. I used to get injections along each side of the nose, as the scrunching was uncomfortable & distracting. It seemed for me that the scrunching was in the beginning of my BEB/Meige, & subsided with time. I no longer need shots there. Some say when their eyes behave, after Botox, so does their "bunny nose" twitching, & so they skip the shots there. Shots in the lower face & jaw for Meige/OMD (oromandibular dystonia) are very helpful for some, & a medical necessity. Others have mixed reactions, pros & cons, depending on the severity of the symptoms, & side effects of the shots. Again, as you have been diagnosed only a few months ago, that's when the symptoms are the very most active (& maddening, holding the eyes open with fingertips, etc.). How much total dosage have you received from your ophth during a treatment? How many treatments have you had? One, so far? It will get better, at least better than now! It takes time & finding the right dosage, injection sites & injector! Related link: http://www.blepharospasm.org/forumarchives/beb4/83107.html Modified by diane48 at Sat, Apr 20, 2013, 13:03:28 |
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Posted by: ConCatLin ® 04/20/2013, 15:44:16 |
Thanks, Diane. Nose scrunching -- that's exactly what I'm experiencing, plus raising of the upper lip due to spasms in the lower cheeks. Very kind of you to provide the link -- I am learning a lot here. I've had 2 treatments, but the Dr. started conservatively due to my line of work, small eyes, etc. I had 30 units total the first time and 30 more a few weeks later, so 60 total. I have had no side effects. The Dr. said 60 units is the standard dosage for around the eyes. The only time my eyes bother me a fair amount now is when I'm looking at the computer screen, which I do all day and part of the evening (and I have my brightness down to zero at work, and all but two fluorescent overhead bulbs removed in my office.) I recently received the BEB packet and will attempt to find a neurologist I can get to. Meanwhile, I have a few questions that maybe you or someone can answer. How many injections are usually given for relief of eye/cheek/nose symptoms? Will all my computer work make the problem progress more or faster, or does it just exacerbate the problem I have? Grateful for any replies, Connie |
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Posted by: bluebird ® 04/20/2013, 19:50:53 |
I get one injection on the side of the nose in the cheek area just below the corner of the eye. That pretty well takes care of the bunny nose. Right now my shots are concentrated on one side. I do not know if people get injections on both sides of the nose or not. It really does help. I would second what others have said about getting to a neurologist or neuro-opthamologist. You are shorting yourself to just use the injections around the eye. Am surprised your doc did not recommend you to go to someone else. I find personal experience is the best way to find a good doc. Ask Anita Croce or tell this group the general area you need to locate someone. |
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Posted by: diane48 ® 04/21/2013, 02:41:27 |
I have the raising of the upper lip, too, I call it "pursing" my lips, at least that's what the spasms there feel like, from Meige. But I currently get injections only around the eyes & mid-forehead. 23 injection sites. 90 or 95 units total, of Xeomin, the equivalent of Botox being the same. Some here have made the jump from an (ineffectual for some) 60 units (your current dosage) to 90 units, as I have. Post-myectomy patients get less, I believe. Regarding eyes/cheeks/nose, I've seen some total 200 units, but that depends on the symptom severity & also eval of your (hopefully future) neuro. Below is just one thread from Archives about injection sites/dosage amount for nose/mouth. For your computer work, You might also consider FL-41 lenses in eyeglasses, even if you don't wear prescription eyeglasses. There's *alot* about them in the Find &/or Archives clickable options at the top of this page.
Related link: http://www.blepharospasm.org/forumarchives/beb4/83107.html Modified by diane48 at Sun, Apr 21, 2013, 02:50:48 |
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Posted by: MTRose ® 04/20/2013, 18:55:33 |
I am in the same boat as you. I type on a computer 40 hours/week and have to in order to support myself. I feel like it is very hard on my eyes. What has helped me, I changed the background color to gray instead of white, enlarged my font, but it is still hard on me and my eyes. Does this make you feel very fatigued as well. I think it is from the eye spasms but not sure. I know it takes a lot of my energy. I hope this helps you. |
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Posted by: ConCatLin ® 04/21/2013, 09:38:26 |
MTRose, I know what you mean about the fatigue. Yes, the all-day staring at a computer screen is extremely hard on my eyes and very tiring. I am an editor and my job is always very busy, so it is difficult to take frequent breaks. The spasms in my cheeks/nose are uncomfortable and very distracting. The near-constant feeling of spasms and struggling to focus through the distraction is draining. Also, I find myself raising my forehead muscles to see better. Doing that all day is tiring. I saw in an article somewhere on this site where BEB cases were broken down by occupation, and "clerical" far outstripped the other occupations. I personally feel as it the dry eyes I got from years of computer work is what led to this horrible condition. Had I known it may have lead to BEB, I certainly would have used more eye drops. Too late now.
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Posted by: MTRose ® 04/21/2013, 11:34:15 |
I've done this all my life too. I recently found Frankinsense oil opens my eyes and relieves the spasms, so that has great but I'm still constantly fighting fatigue. I very much sympathize. |
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Posted by: DaveC ® 04/21/2013, 12:36:40 |
Hi, I have had Meige since 2009 and use a computer for work (from home) all day, every day. Neurologists may or may no know enough to help you. I go to a Movement Disorder clinic where they treat various dystonias including Parkinson's. The doctors there know all about the anatomy of you muscles and which should be injected and where. Neurologists in my experience do not always have this knowledge. I have little trouble using a computer though I do suffer from severe lip pursing and head raising. My eye problems are pretty bad most of the time and I hardly ever drive but I can still handle the computer and even watch TV on my iPad (while lying down only).My computer screens are 27" 1920 x 1200 resolution and this is a big help. The bigger the better. I urge you to find another doctor if you are not getting the results you need. You cannot risk not being able to work.
I hope this helps.
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Posted by: MTRose ® 04/21/2013, 18:14:27 |
I'm sorry you have all this to deal with. I know it is very discouraging at times. What type of doctor has that muscle clinic? I find that very interesting to know and thank you for your post. |
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Posted by: ConCatLin ® 04/21/2013, 19:03:40 |
Thanks, Dave. I wish I could work at home, but my employer doesn't allow it (even though it could be easily done). I would give anything to be able to escape the fluorescent lights. Could you please tell me how your Meige syndrome progressed? Did it progress quickly, then plateau? Did it start out mild and gradually become severe? Did it start in certain places and move to other places? I know everyone is different, but I am so in fear of the unknown and I am trying to get an idea of what to expect. I don't know about Movement Disorder Clinics in the Chicago area, but have an inquiry into my Area representative, so we'll see what I find out. Connie |
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Posted by: Susi ® 04/21/2013, 19:43:14 |
Connie,
FL-41 tinted lenses might help you with the fluorescent lights and wearing a visor or hat with a visor might help as well. FL-41 tint doesn't help with glare but it seems to have a soothing effect in my experience. I hope you can find a neuro who can help you. Susi |
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Posted by: ConCatLin ® 04/21/2013, 20:28:33 |
Thanks, Susi. Unfortunately, I just bought new computer glasses last year when I had vision insurance (I get it every other year), so can't afford new lenses this year, but it's something to keep in mind for next year... I'm trying to picture myself wearing a baseball cap to work. I already wear sneakers for my bad bunion. :-) I'll let you guys know if I find a neuro that helps me. In the meantime, you've all been so helpful an kind; you have my gratitude. Connie |
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Posted by: DaveC ® 04/23/2013, 18:59:07 |
Hi, The practice I go to specializes in Parkinsons and other movement disorders. Since Meige and Bleph are just cranial dystonias, the doctors there have much better information, skill and experience than any ophthalmologist or neurologist is likely to have. Mine is in Fountain Valley, CA. The progression of the disease for me was initial blinking followed by worse eye-opening problems which Botox did help. It was too bad for me to drive but I was able to work at my employer until I found that extraneous noise and the lights were killing my productivity. Once I began working from home there was a big improvement. The progression of eye issues was over about 18 months. Then the Meige symptoms began, mostly affecting mouth and jaw and those got worse over the following 2.5 years with neck problems (head lifting - Botox not very effective) kicking in about a year ago.
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