Re: Early Symptoms?
katrina, is the pain in the actual eyeball? i had copious tearing at one time but i thought it was allergies. keep posting and others will try to help you.
Re: Early Symptoms?
Kathy,
I am having trouble distingishing whether whether that pain is in eyeball or eyelid...
Re: Early Symptoms?Katrina
It is sometimes hard to distinguish exactly where the pain comes from. Maybe it is aggravated by sinus. Are the sinus areas also located there? Isn't pressure in the eyeball also maybe glaucoma? i don't know if there is pain associated with glaucoma.
--modified by kathy at Thu, Feb 14, 2002, 07:20:52
Re: Early Symptoms?Katrina
Kathy,
I've been screened for glaucoma and sinus inflammation.
Katrina
Re: WELCOME KATRINA
Welcome to the beb bb Katrina. Have you also checked out the Dystonia bb as most of the folk there have cervical dystonia?My beb was diagnosed about 7 years go after about 2 years of having difficulties. I initially had very dry eyes and was blinking/squinting a lot, and was told that it was my `old' age and I should use the computer less often. Obviously it did not go away and I diagnosed beb/meige myself from a magazine article I read whilst I was in the U.K. on `stress' leave from my job. I eventually got it diagnosed by a movement disorder neuro when I returned to Canada and eventually had to leave my job. I only get tearing, sometimes, after my botox injections. These tears are not good as they don't lubricate the eye, but just run down the face - they can last for a month. I also get what I describe as eye-pain headaches, that start in the eye and turn into a headache. That also, usually occurs for about a month or so after my botox injections, then seem to clear up. I do hope you get some answers or suggestions from other posts, Katrina. Hang in there and keep us posted. Best wishes. June in Toronto (beb/meige)
Re: WELCOME KATRINA/June
Aren't the type of headaches you are describing, June, sinus headaches?
Re: Headaches/Kathy
I see a difference in my sinus headaches and these eye-pain headaches, Kathy. Right now I don't have sinus (first time I haven't got it after the last 3 sets of botox injections) but I have this eye pain - feels like barbed wire keeping my eyelids open (that's what botox does to me - others are different). Either type of headache, its not nice!June in Toronto (beb/meige) where its gone back to winter at -13degC, very cold but sunny.
Re: Headaches/Kathy/June
Oh. Where did you say you got the window film? I think it's either going to be that or I should buy some curtains for the areas where the light is intolerable for me.
Re: Headaches/Kathy/June
We have solar screens on our windows on the back of the house where the sun is brightest. They help alot.
Re: WINDOW FILM/Kathy
Look in the yellow pages under Windows, Kathy, for the film. I actually got a recommendation but the company was in the yellow pages anyway. Remember there are different types that reflect "Percentage of Total Solar Energy Rejected" - the one I chose rejected 66%. There's a lower one that rejects 53% and a higher one at 73% (there may be more choices now). The higher one shows a silver colour from the outside and you may have seen this on office buildings.The advantage of this over window drapes or blinds is that you can see out of it all the time. You can also have drapes or blinds and, when the sun is really bad, you can pull those as well. We have beautiful views from our apartment and I like to keep the blinds open as much as possible - in the summer they have to be closed by 2-3 pm though because of the afternoon sun. Hope this info. helps. June in Toronto
Re: WINDOW FILM/Kathy/June
Thanks, is it expensive? I also want to see out the windows. Can others see inside through it?
Re: WINDOW FILM/Kathy/June
As I said before, Kathy, it cost about $200 Cdn for each of our large apartment size windows (some are balcony sliding windows). (our dollar is only worth about 60+ cents to the U.S. so it should be cheaper for you!). We are also on the 18th floor so noboy can se in anyway - check it out with a professional, get references and see for yourself if you can look in. June in Toronto
Re: WINDOW FILM/Kathy/June
Re: WINDOW FILM/Kathy/June
We used the solar shield screens and we did 6 windows for $750. You can see out of these also but you can't see in. We did it initially just to help contain the Texas heat but it does help with the light sensitivity.
Kelly
Re: WINDOW FILM/Kathy/June
Yes, i think I've seen those.
Re: WELCOME KATRINA
Hi June,
Good description of tearing---serving no lubricating purpose for eye! Thank you for your welcome---
Katrina
Re: Early Symptoms?
Hi Katrina
I hope you get the answers you need here. One thing you said hit home with me "sort of like a bruise feeling". I have beb/meige (or oramandibular dystonia). I clench my jaw alot especially at night. I began getting what I thought was sinus problems. I felt like I had a bruise just above the inside of my left eye. After a sinus xray revealed nothing I sought further answers and discovered it was from the oramandibular dystonia. I have damaged my joint - TMJ. I now wear a night guard designed by a specialist and have it adjusted often to alleviate the pressure on that joint which can cause pain from head all the way into lower shoulders.My beb developed almost 7 years ago when I was 26. My eyes felt heavy like I needed to go to sleep. I had just had my first baby and thought I was tired. It progressed to actal squeezing which caused severe headaches and there were times I couldn't get my eyes back open again for several minutes. I have been receiving botox injections for 6 years and, while they help, have been on disability for 2 years (I was a CPA) and focus all of my efforts on my 6 1/2 and 4 year old daughters. Kelly in Dallas (33 years old today!)
Re: Early Symptoms?
Hi Kelly,
I don't think I have TMJ, tho I do a little jaw clenching. I'll be careful and aware cause I sure don't need TMJ too---I know it is very painful---I sure hope you are getting some relief.
Yes, my eyelids are getting heavy like you said---this is the first I have heard from others about that.
Thank you for you response...
Katrina
Welcome Katrina and Happy Birthday Kelly
God love you. I'm so sorry you have so many different things to deal with, one thing is hard enough. My symptoms progressed pretty rapidly over a 5 month period. It started out as blinking constantly when I would drive and my eyes watered like a facet. This was only while driving so I thought I was nuts everytime I told someone about it. When the first doc told me I had dry eyes I thought he was nuts. My eye make-up was all over my face from the tears how could I have dry eyes I thought. I got a second opinion and by the time I saw doc #2 my left eye was closing and I was having episodes of squeezing of both eyes. By May the light sensitivity was terrible and I couldn't drive, watch TV, walk down the hall or look at the computer screen or be in any kind of light without my eyes closing. My eyeballs felt like someone was sucking them into the back of my head and it hurt badly. Almost 3 years later, eye surgery, Botox, Klonopin, tons of herbs, not working since May of 99 and stress management I have learned how to live with this better and am doing much better. I have better days and terrible days, but I just keep adjusting and make the best of it and I keep looking for answers that will work for me. I rest often, sleep and rest with my eyes covered, use Thera Tears eye drops, get a massage and chiropracter adjustments every 3 weeks and am working with a herbalist and a neurologist who helps me with my BEB and Fibromyalgia. Don't give up. You are not alone.
Re: Welcome Katrina and Happy Birthday Kelly
Delaine,
Thank you for your thoughtful post. Unfortunately, this progressing Dystonia is only ONE of a number of other things going on---kinda beyond belief. Beginning with a Neuro-endocrine-immune assault in 1985. Either viral or toxic. I have accumulated multiple complications along the way. (Including FM). My theory my doctor shares (and relating to some interesting research on Gulf War Syndrome) is that the original/ongoing assault has resulted in damage to basal ganglia and that plus gene from grandfather (seemingly weak since no other relatives have symptoms) has resulted in Dystonia.
Your tearing and light sensitivity are familiar. I pray to God I do not have such a rapid advancement. Impossilble to imagine bearing that on top of the rest. I'm so glad you have some tools and may ask you mre later!
Katrina
Re: Early Symptoms?
Hi Katrina and welcome to the BEB bulletin board.
My first symptoms were of eye irritation and light sensitivity and eyes just feeling very tired. I was a contact lens user and thought that was the problem. I stopped wearing them and things didn't get better-they got worse. The eye irritation and light sensitivity increased and the squinting became more of a squeezing. Eyes were usually pretty good in the morning and would worsen as the day went on. Both eyes were effected with one being worse. I did have some increased tearing and doctors prescribed different forms of eye drops from anti-inflamatory to antibiotic to steroid to just plain preservative-free eye drops. I developed headaches from the squeezing around my eyes. The only relief was from lying still with eyes closed and a warm or cold washcloth over my eyes. Reading, TV watching and driving became impossible and quickly led to almost total closure of my eyes and having to be led around. All this happened within a time span of about 3 months. There were minimal symptoms before this for several months that I just attributed to my eyes giving up on my contact lens. Looking back, I had problems with my contact lens for years but was too vain to give them up.Hope that this helps a little. From the information that you gave us, your problem may be more similar to what Kelly was describing. You might check with a dentist. I'd a least rule that possibility out. Having Cervical Dystonia, you probably are aware of the need to have a good neurologist that is a movement disorder specialist. They would also know about Blepharospasm. Good luck to you and let us know how you do. Shirley in Arkansas with BEB/Apraxia
--modified by Shirley-Arkansas-USA at Sat, Feb 09, 2002, 18:14:05
Re: Early Symptoms?
Hi Katrina, and welcome to the BB!\Since my early symptoms were very similar to those Shirley just related, I will not write them out again. Mine, however, took a longer time to fully develop. For about two or three years I was searching for answers to the extreme light sensitivity and scratchy eyes. Lots of eye drops prescribed, both tears and antibiotics; situation continued to worsen. I hope you get some answers soon and can begin treatment for relief of your symptoms. Come here often and tell us as much about yourself as you'd like. Sally in North Idaho BEB/Meige
Re: Early Symptoms?
Thank you very much,Sally
Katrina
Re: Early Symptoms?
Hi Shirley,
How very frightening your experience
sounds. As I just said I am praying for more time if this is what's happening. I am very doubtful of TMJ causing these symptoms.
I appreciate your response and what you have done for some relief. Sounds like it's taken alot of guts!
Katrina
Re: Early Symptoms?
Katrina, welcome to our support group which meets every day and doesn't require driving.I do not have cervical dystonia, just blepharospasm (BEB) and oromandibular dystonia (OMD) which equals Meige Syndrome. My early symptoms were constant blinking of both eyes during times of stress. There was no actual pain involved. The OMD started about 9 months later and only showed up when under stress as well. Copious tearing followed which I find very annoying. I also experience light sensitivity, though not to the extent as some of the others on this board. Progression of symptoms was relatively slow and I bought the "It's all in my head theory" for a number of years. When things got worse I finally went to a neurologist who diagnosed me correctly. That was in 99, about 5 years after onset of first symptom.
It actually took a few years to progress to the point where the eyes clamp shut and I can't open them, that's how I found myself walking hand in hand with a strange man across a parking lot last summer, thinking it was my husband. It was kind of amusing in retrospect. By the way, the tearing stopped for a long time and only started up again a couple of weeks ago. If you stick around a while you will see how everybody is different, as far as progression and severity of symptoms, as well as response to the various treatment options. Only the misery of this disorder is the same for all of us. Having a sense of humor is very helpful in coping with this disorder.
Good luck to you and don't be a stranger. Christel in Ca.
Re: Early Symptoms?
Christel,
Thank you for your description. I'm glad you had a little more time to adjust and that nice man holding your hand!
Katrina
Re: Early Symptoms?/Christel
really, that is pretty funny and it is wonderful that he was nice about it. i mean he could have slapped your face or something for being so aggressive, Oops, i forgot only women do that. It now seems that I do have a Valentine.
Re: Early Symptoms?
Hi Katrina, I am not sure what I have to say will help but this is my story. Approx 6-7 years ago I started having Migraine headaches. I have never had migraine headaches before except maybe a few back in the "birth control age". I was approx. 57-58, I am now 65. I became very light sensitive and at that time I was working a part-time job one mile from my house. Part of my duties was to carry mail over to the main building ( I was in the warehouse office) When I went out in the sun light my eyes shut and I would walk across the parking lot with my eyes shut. Gradually my eyes began to close at other times. I asked several doctors , "Why do my eyes close, I feel like magnets were in the lids pulling them down." No one had an answer. My doctor told me that because I had blue eyes I was extra sun sensitive. I noticed that they were closing on cloudy days, rainy days and even in the morning going to work when it was still dark. Finaly a doctor did put a name to it and I was sent to a specialist at Baptist Hospital. There were times after I had the Botox that I would experience sharp pains in one eye, it would be a brief sharp pain but never the less it HURT. I still have headaches but most of them come from the squeezing of the eyelids. The doctor had a name for those sharp pains in the eyes but I don't remember what he called them, but they did have a name. I also have dry eyes after Botox injections and I have the briars, sandy gritty feeling in the eyes which do hurt very much. If you have other questions you can e-mail me. Just click on my name at the top of this post. Joyce in NC BEB/Meige/apraxia(?)
Re: Early Symptoms?
Hi Katrina Welcome aboard. This is a great place to be for information and moral support.I have beb/meige, for about 8 years now. It wasn't diagnosed until 1996 though. The blepherospasm seemed to start gradually with blinking a lot, light sensitivity and my eyes watering a lot. In fact, the docs all kept telling me I had dry eyes. I was putting so much eye drops in my eyes, I felt as though I was in a fish bowl. Anyways, I finally went to a neurologist who told me I had beb. I don't remember experiencing pain in the eye though. Have you tried eye drops? Perhaps that will help. I know I haven't been much help, but do hope you find the answer. Good luck. Carol Brown, Naselle, WA
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