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Posted by: Diane in Illinois ® 04/10/2004, 12:20:35 |
This is my first time on the bulletin board. I was diagnosed with BEB about 1 1/2 years ago. Still learning what botox dosage works best for me. This is frustrating because it takes time to work everything out. I would very much like to hear from any of you for advice. Thanks. Diane |
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Posted by: Lynn Yarbrough ® 04/10/2004, 12:54:56 |
Well, Diane, you have worked out a couple of correct points of view that will stand you in good stead. (1) This is REALLY frustrating. (2) It takes time to work things out. I know - I have been struggling since about 1960 with BEB, although for the first 30 years of my struggle neither I not anyone else I consulted knew what it was. Most people thought I was somewhat crazy, and it was my psychiatrist who gave me a correct diagnosis. After a few sessions with BEB, I have worked out a treatment schedule, dosage, and injection sites that keep me largely free of serious problems for about 6 months at a time. So let me try to encourage you. What you have is, for the most part, controlable, but it will require some life-style changes that you may not like. You probably already have discovered that driving a car during BEB spasms is really scary and you may have to give it up, at least for a time. I had to give up bowling, for example -- the bright lights were too much for me, as well as the embarrassment of standing at the foul line for what seemed like hours, waiting for the lids to stop fluttering. But I recently passed a behind-the-wheel driving test with flying colors, mostly because I timed it to fall between treatments. Most of the people who hang out in this site have been through exactly what you and I have, and although their experiences may differ in detail, we all have the frustrations. It's part of the territory - get used to it. I tell everyone who comes here that the key to living with BEB is to reduce your stress level. While stress does not cause BEB, it certainly agravates it, and anything you can learn and practice about stress management will be helpful. So stick with us. We know what you are feeling, and we have lots of suggestions about the various treatments that have been proposed. There are several nurses here with lots of medical experience, and I think there's at least one MD here with BEB. And you can take advantage of the opportunities to vent your frustration in a reasonably constructive way. --- Lynn |
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Posted by: June in Toronto ® 04/10/2004, 14:51:48 |
Hi Diane and welcome to the beb bulletin board. Most of us were frustrated first in getting this disease diagnosed (took me over 2 years and I finally read about it and diagnosed it myself) and then getting just the right amount of units of botox and correct injection sites. It all takes time and patience - but in the end is worth it. I am one of the lucky ones in that botox helps me a lot - I get 90 units ever 3-5 months. I've had beb/meige for over 9 years now and had to quit my job at a university because of it. I was almost near early-retirement age then so it wasn't such a big deal to me as it is to others much younger - I really feel badly for those who have to carry on regardless with a full-time job and perhaps young children - its very hard. Lynn told it `as it is' - try to delete stress from your life (as with any disease) - easier said than done, but oh so necessary with beb. I started Hatha yoga 2 years ago and it has been a life saver for me. After 9 years of not being able to read a book I am now able to read large-print ones and its such a joy. After not being able to watch tv or go to a movie for a couple of years - I now can. So things can and do change, for the better sometimes. I still can't be in a room with candles, flash cameras, watch a firework display or go to a big theatre show (like Mama Mia) where there are strobe lights. I struggle with dry corneas and get checked every couple of months for this. I use drops/gels/creams at least every hour 365 days/year - I also am trying 12,000 mg of flax-seed oil caps to see if that helps. Let us know how we can help you and we'll do our best. Take care June in Toronto |
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Posted by: Debbie ® 04/10/2004, 23:22:39 |
Hi, June. How are you? I noticed that you mentioned in your post that you are still trying the flaxseed oil. It's been a couple of months now, hasn't it? Have you noticed any improvement whatsoever? I really find that it helps. As I've said before, the results are far from miraculous, but my eyes do seem to be moister. Does it seem to be helping at all?
I hope so, since I suggested it to you! Debbie |
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Posted by: June in Toronto ® 04/11/2004, 05:24:30 |
I think its only been about a month Debbie and during that time I've had some botox injections so my eyes are at their worst as I suffer from side effects for up to a month with them. I go to the ophthalmologist next Tuesday and as she is to check on the dry corneas again (she was quite concrned last time) - so we shall see. The eyes feel awful at the moment - very painful, dry and scratchy so its hard to tell if anything....is working! I'm in a bit of a `pity' state right now with the side effects! I'm hoping when they have passed my eyes will feel more moist - I've certainly been keeping up quite a regime with them, so it won't be for a lack of trying. Thanks for checking in with me and I did appreciate the info about the flax seed oil caps. June in Toronto |
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Posted by: Debbie ® 04/11/2004, 10:19:52 |
Dear June,
I am so sorry to hear about your dry corneas. I know the feeling, and it's not a good one! Know that I am thinking of you. I wish I had a magic wand to make it all go away, and unfortunately, the flaxseed is helpful but not miraculous. However, keep taking it, as you may start noticing results when the Botox side effects wear off and you have been taking the flaxseed for a couple of months. Also, they say that flaxseed is good for heart health and lowers cholesterol, so I figure it can't hurt. I also just bought a bottle of flaxseed oil to use on salads---it is supposed to be very healthful. Keep us posted on your eyes....as much as I love the springtime, the lovely, sunny weather is hard on my eyes due to the bright sunlight...the other day I was wearing (while driving) a pair of prescription sunglasses covered by a pair of polarized wraparound sunglasses, topped by a hat with a visor.....hope this makes you laugh, at least, to imagine me in my googly gear! Best of luck,
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Posted by: June in Toronto ® 04/12/2004, 05:10:21 |
Thanks for your very kind message Debbie. I laugh at myself having to wear that kind of gear myself sometimes - a couple of pair of sunglasses and always a hat with a brim. I got a rather nice new one (hat) for Easter, not too fancy (as I'm not a fancy person!) but with imprinted flowers on it on a black background. I felt rather good wearing it (with my dark glasses) at church and at lunch for Easter Sunday. I'm continuing with the flaxseed caps - might get some oil for salads as well - it can't hurt and may well help. I find the winter months worse for me - the cold winds hurt the eyes so much. I'm still trying to track down some good goggles that don't fog up in the cold - anti-fog didn't seem to help a pair I had, and I'm a little bit too vain to wear the huge skii goggles with all the wording on them and so very colourful:-) If I had a magic wand I'd wave it for ALL of us- this isn't any fun. Keep laughing - its better than crying (mostly!) June in Toronto Modified by June in Toronto at Mon, Apr 12, 2004, 10:57:02 |
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Posted by: June in Toronto ® 04/12/2004, 07:48:42 |
I meant to post about this other supplement for dry eye - that I haven't tried. Shanasy and others posted about this in 2001 (I must be very....slow in checking things out:-)), but I intend asking the ophthalmologist tomorrow what she knows about it (most probably nothing as most doctors don't seem to recommend or know about herbal remedies). The link below tells you more about it. cheers June in Toronto Related link: http://www.avclinic.com/hydroeye.htm |
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Posted by: kathytai ® 04/12/2004, 08:46:13 |
The hydroeye is what Dee is taking in conjunction with 4000 mg of fish oil and has relieved her spasms tremendously. I've also been trying the same dose of fish oil with other things. Have found something else, Source Naturals Visual Eye, which in conjunction with the fish oil, has also relieved my spasms. I found the Visual Eye at a store called Wild Oats here in Portland. Haven't looked for it online yet. Both the hydroeye and visual eye have a lot of the same ingredients.
Kathy |
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Posted by: June in Toronto ® 04/12/2004, 10:55:25 |
Hi Kathy, Dee just e-mailed me as she had problems with the bulletin board. She is taking "HydroEye plus 4,000 mg of Fish Oil concentrate (omega 3 fatty acids) and 2,000 IU of Vitamine E and hasn't had Botox since last July - although she can't say for sure that the vitamins are responsible for blephs being improved such a lot". Let us all know what you find out about Source Naturals Visual Eye -thanks Kathy June in Toronto who just came back from an aerobics class where I wore (as usual) dark brown wrap-around glasses and a hat. Its such fun....wearing the hat over my face when doing `crunches' on the floor - but oh those fluorescent lights hurt so much without it! "Where there's a way there's a will" |
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Posted by: Kathleen ® 04/12/2004, 08:41:20 |
I also suffer from dry eyes all the time and especially after the botox. I have been taking Thera Tears Nutrition (a flaxseed and assorted other ingredients supplement) and after about 3 months of taking it continuosly have found that it helps quite a bit. This may be old news to most of you, but I have also found that eliminating caffienated beverages from my diet and drinking a lot more water has helped, also. That seems to make sense to me, since caffiene acts as a diuretic. Boy, it was hard to give up my morning coffee, but so far I'm surviving. We'll see how summer goes - my favorite thing to do is get up early in the morning and take my HUGE coffee mug out in the garden and sit and drink coffee and listen to the birds sing and look at my gardens. |
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Posted by: June in Toronto ® 04/12/2004, 11:01:16 |
I only drink one cup (and not every day) of coffee - hate to give that up - but know I'd survive as well! I've always (years and years) drunk loads of water and have never drunk pop at all (hate it). I'll check into Therea Tears Nutrition - I use the drops - hope they know about it here in Canada, but sometimes we are behind the U.S. with this stuff. Thanks June in Toronto where it is a lovely springish-type day and the sun is shining (rain expected tonight) |
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| Kathleen--flaxseed oil and no caffeine | | ||
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Posted by: Debbie ® 04/12/2004, 22:01:19 |
Dear Kathleen, Can't believe you gave up coffee entirely! I just have one big cup in the morning and that's it for the entire day. I can't believe that one cup is drying my eyes out (or maybe I'm in denial?) I've been taking flaxseed oil and vitamin e since last summer and it does seem to help....I haven't had botox since last August. I used to take Thera Tears but thought it was overpriced. However, I confess, when I read your post, I ran to Walgreen's and bought two bottles of the Thera Tears Nutritional supplements for dry eyes (luckily, they were on sale) and am going to integrate it with the flaxseed. I always felt that the Thera Tears, as prescribed on the box, was never nearly enough, so I upped the doses, and now am taking even more with the flaxseed oil combination. How many Thera Tears capsules do you end up taking per day? I don't want to overdo it, but I don't want to start spasming again either!
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Posted by: Jane ® 04/12/2004, 23:44:06 |
I agree about the effect of caffeine on drying the eyes. Just can't give up that morning cup! What do you think about the effect of ginseng? I use it sometimes to perk me up and I have noticed any ill effects. I would be interested in your thoughts. I think any oils help such as Omega3 (Fish Oils).
Anybidy use that? |
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Posted by: Kathleen ® 04/13/2004, 08:16:51 |
I haven't ever tried ginseng. I tried fish oil capsules and kept belching up a fish taste all day so that went by the way side pretty quickly! My medical doctor is a real advocate of natural and alternative medicine and he is sold that omega-3 fatty acids are very helpful, especially if we have a diet with much processed food. |
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Posted by: Kathleen ® 04/13/2004, 08:14:25 |
I was down to about 3 cups (but large cups) of coffee per day before I decided to try quitting entirely. It's not been easy. I've been a pretty heavy coffee drinker for over 30 years! One thing I've found about this disorder - it is not predictable so maybe having less trouble with extreme eye dryness since I quit caffeine is just another fluke. I'm going to try decaf in the future. With the Thera Tears, I take 4 capsules every morning. I do take another flaxseed oil supplement with it sometimes, but can't remember the dosage of it. I'm not real consistent with that, because I just get tired of taking pills. |
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Posted by: Cynthia ® 04/13/2004, 10:09:22 |
For what it's worth, there was a BEB "segment" about caffeine several months ago. The final concensus was that avoidance helped in several cases, but others noticed no difference. Guess the best thing to do is try it. Limiting caffeine is probably better for overall health anyway :-) In my case I was doing very well without it until I discovered cappuccino ... now I'm a complete failure. (*_*) Cynthia in IL |
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Posted by: June in Toronto ® 04/13/2004, 11:41:55 |
I like, and mostly make it myself, a half cup of coffee with a 1/4 cup of skim milk whipped (it whips wonderfully - better than whole milk) into a latte. Top it with cinnamon (which someone else some time ago posted was good for us), it makes a lucious dessert/drink. I don't like chocolate (I know I'm strange), so cinnamon is great for me. June in Toronto |
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Posted by: June in Toronto ® 04/13/2004, 11:38:18 |
Be careful, also, of de-caf coffee. The last I heard (from reserachers at a university) it was only 7% de-caf in actual fact. Unless its improved since then! I've just enjoyed my one cup of coffee for the day - I've never been a big drinker of it. When I worked it was still 1 cup and the rest of the day it was hot water and lemon, which I didn't mind if it gets cold before I could drink it. I hate cooler coffee! Its hard to quit coffee that's for sure. June in Toronto |
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Posted by: Cynthia ® 04/10/2004, 14:59:09 |
Welcome, fellow-Illinoian! Your word "frustrating" is very accurate with this BEB disorder ... it's indeed very frustrating, but it's not terminal. As Lynn has already said, depending on how effective Botox is for you, you may have to make some minor or even major lifestyle changes; however, you may continue to do very well with with what you are doing now. BEB affects us all differently it seems, and what might work for one may not work for another ... see why frustrating is a perfect word?
But ... we can still have FUN and we do! Cynthia in North Central IL ... where do you live? |
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Posted by: Diane in Illinois ® 04/11/2004, 19:07:42 |
Hi Cynthia. It's nice to talk to other people who have BEB and understand what it's like. I live in Ogle County in north central Illinois. Where do you live? |
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Posted by: Cynthia ® 04/12/2004, 08:32:55 |
Diane, I think you must live fairly close ... Dixon, Oregon, Rochelle area? I live in Mendota, LaSalle County. On occasion a few of us have had a mini-support lunch get-together in Rockford, but it's been awhile. Would you be interested if we did it again? Where did you get your diagnosis and treatment?
Cynthia in IL (practically your neighbor :-) |
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Posted by: Debbie ® 04/12/2004, 10:58:52 |
I would love to attend a BEB lunch if you have one! Are Chicagoans welcome as well? I hope so!
Rockford is a reasonable driving distance for me. Actually, I just had dinner there the other night at a great restaurant. ;-) Debbie |
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Posted by: Cynthia ® 04/12/2004, 12:09:58 |
Of course, Debbie! You're on the list as well as anyone else who's interested. It will be posted whenever it is set up.
Cynthia in IL |
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Posted by: Ann Doyle ® 04/12/2004, 12:22:30 |
There is another side of getting Botox. You don't need the same ammount in the same places everytime. At least that has been my experience and more of the frustration. I have an excellent Movement Disorder Specialist at Vanderbilt , Nashville, We work together so I have to remember what was acting up and where and how much. Sometimes and can touch a particularly sore muscle and he can feel it. Also, he has about eight different pictures of the muscles of the face from different angle and diffent levels. It really gets complicated. It started out easy with just the eyes but has gone into the cheeks, jaw , tongue and throat. Ann Doyle |
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Posted by: Diane in Illinois ® 04/13/2004, 18:20:29 |
I live in Mt. Morris. I was diagnosed by a doctor in Rockford.
Rockford is an easy trip for me. We usually go to Rockfod for shopping. I have also been to a couple of other doctors - one in Park Ridge (a suburb of Chicago) and one at UIC in Chicago. Unfortunately Rockford does not offer much in this field. Are you planning on attending the meeting in Peoria in June? I am. This will be by first meeting of this kind. Diane. |
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Posted by: Cynthia ® 04/14/2004, 15:21:08 |
I'll look forward to meeting you at the Peoria support group meeting, Diane! In the meantime whenever we get something going for Rockford I'll let you know.
Yes, it's too bad there's not more help available in the Rockford area, but at least you got a diagnosis there. That's a plus. Cynthia, your neighbor in IL |
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Posted by: Debbie ® 04/10/2004, 23:19:03 |
Dear Diane, You are in good hands with the people who have already replied to your message. They know a lot more about this mysterious disorder than I do! I was also diagnosed about a year ago. I have had Botox injections only once so far, knock on wood, in August, and am hoping to prolong the time between injections, but I think I'll have to play it by ear and see how things go. I have good days and bad days. Generally speaking, my mornings and afternoons are good and my evenings are not so great. I am coping, but it can be frustrating, trust me. I also live in Illinois....Northeastern IL. Feel free to write if you have any specific questions or merely need to vent! Debbie |
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Posted by: Diane in Illinois ® 04/11/2004, 19:03:27 |
Hi Debbie. I'm happy to hear from you. I live in north central Illinois - Ogle County. Are you anywhere close? Diane |
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Posted by: Debbie ® 04/11/2004, 19:11:55 |
Dear Diane,
I live in Cook County/metropolitan Chicago area. Not sure where Ogle county is.Is Oglesby in Ogle County? I'm asking because, coincidentally, I was just in Oglesby a couple of weeks ago. Sounds like we contracted BEB around the same time. Maybe something was "going around" in the Midwest??!! Keep in touch,
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