Posted by: ClaireW ®
02/22/2003, 18:03:15
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No..Blepharospasm is not a symptom of parkinson's to come...hope that reassures you. The connection is that like Parkinson's it is a "movement disorder"...but the movement that has gome wrong is the movement of our eyelids.
Best Wishes
Claire
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Posted by: Brenda ®
02/22/2003, 18:24:37
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Thanks Claire. Your response did ease my concerns but Blepharospasm IS a form of Parkinson's, right? Have you had Botox injections? What medications have you tried? How long have you been diagnosed? Please fill me in...I am new to this and HATE it with every difficuly breath I draw..Brenda in Louisiana
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Posted by: Dee in OR ®
02/22/2003, 19:43:34
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Hi Brenda,Dystonia and Parkinson's disease are two distinct movement disorders. Some Parkinson's patients get a form of focal dystonia, but it doesn't usually work the other way around. Blepharospasm is a focal dystonia and some Parkinson's patients have blepharospasm. Some dystonic symptoms are referred to as "Parkinsonism" which simply means the muscles get rigid, as they sometimes do with Parkinson's Disease. It is very confusing. If you want to learn more click on the link. Hopefully that will answer your questions better. Cheers,
DeeOR Related link: http://www.dystonia-foundation.org/
Related link: http://www.dystonia-foundation.org/
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Posted by: Lynn Yarbrough ®
02/22/2003, 21:12:59
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Hi, Brenda,I'm sorry you feel bad. Are you seeing a neurologist or opthalmologist, or what? If not an neuro'ist, then I'd suggest you consult one to get specific diagnosis and treatment for your sinus problems. It's possible -- I would guess likely -- that that condition is stress-related. BEB does that to you. One of the annoying things about BEB is that it requires lots of patience. Nothing changes quickly. Botox is made from botulinum toxin, which is about the second most toxic substance on Earth (behind Plutonium), and doctors are naturally on the alert for possible overdosing. So the first few sets of Botox shots are likely to be less than what you might like right now. But you must let your Dr. set the pace for a while. What that means is that it may be a year or more before you get the right dosage for your condition. Then you can begin to experiment with the duration of the effects, and you will likely be able to stretch the duration out several months. (I'm on a twice-a-year schedule now.) At least that's my hope for you. And no, this is not directly related to Parkinson's except to the extent that they are both nerve diseases. My Mother had Park's, and I know what's different. We hope you will find some comfort from your new friends here. Drop by every once in a while and get acquainted. It's a neat bunch of people. --- Lynn
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Posted by: Brenda ®
02/23/2003, 08:41:08
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Thank you so much for your answer. Yes, I am seeing a neurologist as well as the plastic surgeon who is giving me the botox injections. I am scheduled to see a specialist in New Orleans at the end of May. So, in the meantime, I am trying to just hang in there. My husband really worries about me driving so I don't any more than I have to but I can't stay a prisoner here at home. I am a portrait artist and I am still able to paint some but when I am done my eyes want to only shut. I just wondered if anyone else had a problem with breathing through their noses. I'm sure it is stress related because this has me at the end of my rope. Thanks for the advice.
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Posted by: ClaireW ®
02/23/2003, 08:45:48
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About breathing through noses...have you tried Salex..it's a nasal spray..just saline, that moistens your nasal passages. my nose gets bunged up..and i think it's because it's so dry! When I am using copuious amounts of eye drops...they drain near your nasal passages don't hey..my nose seems better. Someone suggested the nasal spray as being a harmless thing to try!
Claire
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Posted by: Brenda ®
02/23/2003, 09:50:13
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Thanks for the advice, Claire. I've tried one called "Ocean" and it helps sometimes. Today it is better, I am breathing better. I hope it lasts through church. One other question...can you wear eye makeup anymore, if you wore it before being diagnosed? Because of having to use drops so often and because of the spasms, it "flakes" into my eyes and makes everything worse. So I wear sunglasses everywhere, inside and out. I feel naked without eye makeup! Is that a thing of the past?
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Posted by: ClaireW ®
02/23/2003, 10:12:13
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Well, I have had to give eye make up and mascara a miss too since the Botox. I do use blusher and lipstick though...make the most of my lips with lip liner and lovely moist lipstick.
I do get my eyebrows shaped regularly..that makes me feel good..but the Botox has made them a bit lopsided I think! I also spend far more time coloring and styling my hair..hoping that it distracts from my grotty eyes.MAKE THE MOST OF WHAT YOU'VE GOT...(Any men on the board must now close their eyes)...Since my face has gone west..i have meige too..I have invested in some excellent bras that give me a great cleavage and wear v-neck/open neck shirts as often as I can! What an admission. I must admit that I seem to get better treatment form the male docs too when I am doing my Dolly Parton act. Sad but true!
A shame-faced/brazen Claire
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Posted by: Rita Molnar ®
02/23/2003, 16:39:53
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Hey Claire...You are sooooo bad !!! But what a GREAT thought !!! I can just see it on next week's Evening News .... "Cleavage Combines With Botox to Relieve BEB Symptoms"..... Actually, that's not so far off base--when you're feeling better, stress and anxiety is reduced, and that's always been a help for me. I am running out TOMORROW to invest some open-neck tops and a better bra !!! Look Out World !!! I have Meige along with BEB, and I like your suggestions about distractions and making the best of what you have.... You go, girl ! Rita in New Jersey
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Posted by: Ann Doyle ®
02/24/2003, 14:59:49
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I never had real Breasts. I had AA cups. I didn't need a bra. Two band aids would do. When I went through menopause, here they came . Really big c's and D;s. who needs them. Just get in the way. Now I know what to do with them. I grew up before push ups and push ins and lifts and water filled. The most we could do is put in a gym sox. Can hardly wait to flash these voluptuos girls around. I've been wearing sweat suits.
Now on a serious note and breathing. My tongue slips down my throat a little bit and I don't know it. If I'm asleep, I wake up because I can't breath. I sit up and turn to the left and then it is ok. If I'm awake, I can still breath but it is definitely in the way and I don't know it. I'll try to drink a coke and it comes out my nose. That sort of destroys the thought of the voluptuos breasts. Oh well, we can't have everything.
It just effects different people different ways.
Please be sure to tell your DR. that you did not get enough Botox the last time. That you need more to make a differenc.e.
I find I like a Movement Disorder Specialist. That's a Neurologist with extra traing to make him or her a specialist. and get one who listens and works with you. This take forever it seems but you keep getting better results. We love having you here. Please tell up how it goes with your next DR. Ann Doyle We all care.
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Posted by: June in Toronto ®
02/24/2003, 16:41:31
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You are a hoot Ann:-)June in Toronto who always gets a good laugh at Ann's posts.
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Posted by: ClaireW ®
02/23/2003, 10:13:46
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Just noticed you are a portrait artist. Do you use paints with solvents in them..i ask because they make my BEB so much worse!
Claire
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Posted by: June in Toronto ®
02/23/2003, 10:37:57
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Hi Brenda, welcome to the beb bb. Others have posted to you with good comments. I just want to say that if, as you said, you are getting botox injections at the nose area, maybe that is what is causing your breathing problems with the nose! I've had beb/meige for 8 year's now (I'm 63) and only get the injections around the eyelid and forehead area. I choose not to get them on the face for the Meige as it can cause a droopy mouth, a lop-sided smile and other side effects. My Meige is managable without the inejections so far. Others on this bb do have breathing problems with their dystonias - I hope they will post back to you.As Lynn, said, getting the injections placed in the correct locations for each individual takes time and patience with you and your doctor working as a team. The amount of botox units used also takes time to figure out - I get 90 units of botox with about 16 injections total for the 2 eyes, but I started out at much less botox units years ago. As far as eye makeup is concerned - I don't use it at all anymore and really miss it, as I'd never go out of the house without it at one time. This is a strange disease and stress can really cause extra problems, so you should work on eliminating as much as possible (stress can cause extra problems with any disease). Dystonia is NOT Parkinsons - they are both movememnt disorders though. Come back and let us know how you are doing - we really do care. June in Toronto where we had freezing rain, snow and a blizzard last night - it doesn't look so good this morning either!
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Posted by: Brenda ®
02/24/2003, 10:07:53
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Thanks. I think I will pass on the botox around my mouth next time because I do feel strange trying to smile. But I do feel better knowing that you all are out there also and that I am not just "nuts"!
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Posted by: Ann Doyle ®
02/24/2003, 15:18:55
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Brenda. My dr also does not like to give shots around the top of the mouth. He gave me a little bit onco so I could see what it was like. It was similar to going to the dentist and having my top lip numb. I had to eat everything with a spoon or I would bite my lip. It was really hard to put on lip stick. I used lip liner for the whole works. I have given up on eye makeup except for eyebrows. I wear dark skiing glasses most of the time anyway.. I'm glad I don't have to date or apply for a job. There are advantages to being age 72. I used to wonder why older people gave up makeup. First of all it gets cacked in the cracks(affectionately called wrinkles and just exaggerates them. Lips disappear for the most part unless you have collagen.
It is all made up for by grandchildren. My youngest son age 36 just got married for the first time to a young lady 33 who made a very bad choice the first time and has a 4 year old. After their honeymoon, my son spent the night and that was OK. The second night was OK too but the 3rd night was too much and she said' Are you going to spend the night again?" I mean enough is enough. Ann Doyle
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Posted by: Virginia ®
02/23/2003, 11:46:01
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I'm one of those with breathing problems. I've been to an ENT to be sure that everything in my nose and sinuses is functioning properly - even had a septoplasty to see if that would help (improved my sense of smell). I use a saline gel when my nose is dry because the liquids are too irritating. My lower tear ducts have been cauterized, so my nasal passages don't benefit much from eye drops.I've been to several neurologists (movement disorder specialists) who assure me that it most likely is part of the dystonia. I don't mean to sound discouraging, but so far I haven't found anything that really helps. Stress makes it worse, but "normal" things like eating, speaking, walking, etc., set it off. I do not get botox at the sides of my nose, so I don't think that is it. Mostly I just put up with it and have gotten used to it until someone asks me about it (usually comments like "Having problems with allergies?"). When it gets really bad, I find that lying down with my neck supported helps - but you can't spend your life that way. Keep us posted and try to be patient about the Botox. It may take a while to get the dosage and placement of the injections adjusted. And sometimes, even a change in doctors is necessary. Virginia in AL
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Posted by: catherine pender ®
02/23/2003, 13:40:51
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BrendaI have had the same problem with the breathing. I feel like I am gulping. I have mentioned using childrens Gravol (available is Canada) and I think called dramamine (motion sickness tablets in the USA) The childrens dosage does not make be drowsey, 15 mg. If it does you have to get use to it like any other meds. My doctor says it is non habit forming and I use it when I have a feeling of anxiety. It is better for me than taking ativan all the time, and cheaper too! Catherine in Canada where it is -35C with wind chill factor.
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Posted by: Virginia ®
02/23/2003, 15:23:32
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I tried the dramamine tablets one of the times you mentioned it in previous posts. It didn't make any difference for me. I don't have any symptoms of anxiety since I started taking clonazepam (which is, of course, habit forming).Virginia in soggy AL
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Posted by: Brenda ®
02/24/2003, 10:04:39
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Thanks so much for the advice. It does feel like I am spasming inside my nose and throat making it difficult to breath normally thru my nose. I have been in much better spirits, though, since talking to all of you fellow "BEB's".
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Posted by: Brenda ®
02/24/2003, 10:05:09
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Thanks so much for the advice. It does feel like I am spasming inside my nose and throat making it difficult to breath normally thru my nose. I have been in much better spirits, though, since talking to all of you fellow "BEB's".
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Posted by: Ann Doyle ®
02/24/2003, 15:23:03
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Karen , maybe yours is entirely different. but I know I am not breathing, when it waked me up at night. Thwo mild shot on the outsied of my throat help. Ann Doyle
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Posted by: Rita Molnar ®
02/23/2003, 16:52:02
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Hi Brenda...I've been getting Botox injections for about 2 years now (only around the eyes). I have BEB and Meige. I always seem to be getting a "stuffy" nose. I don't know if Meige, BEB, or Botox injections have anything to do with the stuffy nose...I've always blamed it on a sinus condition and allergies. I use Benadryl Sinus and Allergy tablets, and they seem to help a lot, and for some reason unknown to me, clear breathing and relief from my stuffy nose seems to alleviate the BEB and Meige symptoms as well. I wouldn't give up on Botox just yet. Your first experience is not always your best one. I'd suggest you work with your doctor to see what dosages and locations are best for you. Don't be worried about Parkinson's...Although both BEB and Parkinsons are dystonias, they are different...and one doesn't come from the other. Best wishes to you for successful treatment... Rita in New Jersey
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Posted by: catherine pender ®
02/23/2003, 18:32:19
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BrendaCan your neurologist give you the botox injection? I have been to a cosmetic doctor who give botox as well but was not impressed with his understanding of blepharospasm. Just a suggestion. I suspect that most others on the board go to a neurologist. Catherine
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Posted by: Brenda ®
02/24/2003, 10:15:10
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My neurologist is a cousin of the plastic surgeon that gives me the injections. (Sounds like Deliverance, but the plastic surgeon's office is in Baton Rouge and my neurologist's office is in Lafayette, La.) Anyway they consult each other about my case and the neurologist said he gives botox in other parts of the body for various things but not around the eyes. The plastic surgeon has been doing this for many years, I just don't remember exactly how long he has said. But he has been the most knowledgable about the disease that I have found so far among my many doctors.
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Posted by: Brenda ®
02/24/2003, 10:11:40
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Thanks for your reply. About the only time I am releived of the difficulty with breathing is when I am TOTALLY relaxed, about to fall asleep. I have found lately that muscle relaxers and decongestants are about all that help.
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Posted by: Ann Doyle ®
02/24/2003, 05:44:37
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Brenda,, they are both dystonia but at other ends of the spectrum. With Parkinson, they can't get their muscles to work and with Bleph, we can't get them to stop working. There are some dystonias that are minor, such as hand tremor, restless foot sydndrome.
Drs. start with a low dosage on a new patient and build up. I have Bleph and Meige. I get shots around my eyes mostly. 100 units and 20 sites. I get a little at the jaw near the ear because I clench it and it gets sore. I also get a little at my throat to help me swallow. I have tried on the side of the nose but it traveled down to the lip and I couldn't control the lip until it wore off. My Dr. doesn[t like to give above the lip because he said it usually has bad results but under the lip is ok. After the nose thing, I agree with him FOR ME. We are all individuals. Work with him. Pay attention. Tell him what works and what doesn't. Ask for a printout sheet of where you are getting Botox and how much. I started out at 25 mg, then 50 , then 70 and he kept going up by 10's until I now get 100. The problem is my condidtion kee[s gettig worse. my husband is sick have ti go. ann doyle
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Posted by: Brenda ®
02/24/2003, 10:17:01
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Thank you Ann. I keep learning more and more from you guys. Hope your husband is better.
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Posted by: joyce whitt/NC ®
02/24/2003, 17:56:19
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I know this is a stupid question but someone once said there are no stupid question so here goes. A lot of you have posted that you had difficulty breathing - but according to the above post, they are having trouble breathing through the nose. Is this where the breathing problem is or somewhere else? I have what I call being short-winded, it is like asthma but without the wheezing. It has been very bad here lately. I have gained a little weight this winter but I was like this before I gained the weight. I also get choked very easy, I can sip water or slightly turn my head or suck on a sweet piece of candy (Whethers)
and I will start coughing so hard I can't breathe. I do not smoke so it is not related to that. I have always been an active person but because of the "short-windedness" I am hesitant to start exercising. The first time I had it I went to the doctor (family doctor) and he said I was having an anxiety attack and when I told him I thought it was related to my BEB he slaped the desk and said "nonsence" Before you cast judgment on him he has really cooperated with me on different medicines for my BEB like the Klonipin. I also make noises in the throat when ever I am struggling to open my eyes - it is an autonatic noise I am not conscience of making it. My husband is the one that first notied it. Joyce in NC who is hoping her stupid question is not stupid. Temperature today was 60 but tomorrow evening we are expecting either a very cold rain, or freezing rain or snow. If you don't like the weather in NC, just wait a minute, it will change.
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Posted by: Brenda ®
02/24/2003, 20:26:48
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Hi Joyce,
I agree that there are no stupid questions here and we are all looking for answers. Most of us are all in the dark about this damned disease. I am new to it but I'll address my breathing problems. I never had this before being diagnosed with BEB. I just can't seem to get enough air breathing thru my nose and have to gasp to breathe thru my mouth. We live in the deep South and the humidity, etc. doesn't help. I am not a mouth breather...couln't scuba dive because of that. I have an inhaler which I use daily but never did before BEB...just to try to help open up the airways. I am at my wits end because I think I could handle the post botox spasms but not the gasping for breath. Good luck to you... Brenda
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Posted by: MaryNY ®
02/24/2003, 21:59:58
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Joyce - I could take 60* right now! We're hoping it stays above zero tonight and tomorrow!
Your breathing problems sound like me. As someone else said once, I feel like I have to tell myself to breathe sometimes. I don't choke, thankfully, but feel like I could sometimes. My husband, too, tells me he knows when I need shots, because I make (unconciously) funny noises in my throat. I use a CPAP for sleep apnea at night, and it seems good to put it on when I go to bed, because I can breathe so much easier, and have no trouble going to sleep and staying asleep. Mary
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Posted by: Rita Molnar ®
02/24/2003, 23:31:32
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Hi Joyce...That was a very logical question. I wondered, too, after reading all the various posts...Sounds like we all have a lot of different kinds of breathing problems. I have BEB and Meige, but only receive Botox injections above and below the eyelids. Sometimes my doctor will try to go a tiny bit lower on my upper cheek hoping to help the Meige a little (it doesn't). So, I can't say that the Botox injections are related to any of my breathing problems, and I have several different kinds. I'll try to explain my different kinds of breathing problems. Here goes:
1) I have problems breathing through my nose very often. Always thought it had more to do with a sinus condition or with allergies rather than with BEB or Meige. But the confusion in my mind is...When I take Benadryl Allergy/Sinus tablets, it clears my nose AND ALSO helps my BEB and Meige Symptoms. So What does that mean???? Do sinus and allergy problems naturally accompany BEB and Meige???? Is being able to breathe through the nose what's easing the symptoms of my BEB and Meige, or, is the Benadryl helping my BEB and Meige, and THAT's what is clearing my nose. ????? 2) I very often wake during the night, with my heart beating like crazy, and having a feeling like I just stopped breathing. On many occasions just as I'm falling asleep, I jump up with a start, again, with a feeling like I stopped breathing. I've never been checked for sleep apnea, but that's what it sounds like to me. So, if I have BEB and Meige AND sleep apnea, does that mean the BEB and Meige are causing the apnea??? 3) If I have my head turned to one side while I'm swallowing liquids or solids, I also choke, and begin coughing. Is that a symptom related to BEB and/or Meige, or is it simply that (as my Mom used to say) "it went down the wrong pipe" ????? This happened to me sometimes when I was younger, but seems to happen more frequently now that I'm older. It seems like we can blame problems like these on whatever.... Take your pick...BEB? Meige? Sinus Condition? Botox Injections???
Overweight? Or, is all this just a part of the aging process????? And....will we ever know????? Rita in New Jersey
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Posted by: Virginia ®
02/24/2003, 23:47:40
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I guess my breathing problems aren't always the same. The most common problem is that it feels like air won't go through my nose - causing me to "sniff" a lot. Thus the "allergy" questions I get. This is almost continuous when I am not lying down. There is another person in our local support group who has the same symptom. My ENT says is is just a habit - one I have acquired since I developed BEB. It definitely gets worse with any exertion - and I mean normal stuff, like walking.My throat also gets tight sometimes, so I also feel like air is not getting through to my lungs. I do get choked - my breathing and swallowing don't seem to coordinate properly. Virginia in AL, with daffodils blooming.
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Posted by: Joyce in NC ®
04/15/2003, 14:49:19
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Hi evryone- I have noticed since I last posted about the breathing problems that when my eyes are at there worse (most days) as I go around the house doing the litle things, straightening up, etc that I make this grimace with my mouth and find that I am breathing through my mouth and I consciously hace to make myself breath through my nose. Then I forget and I am back to breathing through my mouth. My nose is not stopped up and if I think about it I can breath through my nose. Weird, I am not even going to figure it out. Just as long as I keep breathing, that is the main thing. Joyce in NC
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Posted by: Carol A. Brown ®
04/15/2003, 19:34:57
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Hi Brenda,I am wondering if maybe you are having too much botox around the nose causing you to feel stopped up. Also, I always thought dystonia and parkinsons disease were two different things. I believe dystonia is muscles, whereas parkinsons disease is the nerves. Also, my doc told me that in parkinson's disease, there is a complete lack of dopamine in the brain, but in dystonia, only an insufficient amount. Don't quote me as gospel, but I think I am right. It usually takes a while for your doctor to find the right dose of botox. I know that it did me but finally got it figured it out. Good luck and keep the faith! Carol Brown, Naselle, WA where we are having a sunny day today. HOORAY!
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Posted by: Brenda in Louisiana ®
04/17/2003, 09:19:02
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Hi Carol,
I don't feel stopped up at all! I just FEEL spasms in my nasal passages and throat, making me wheeze and gasp for breath. And it comes on just like the symptoms of Blepharospasm...if I am totally engrossed in somthing it doesn't bother me that much most of the time. But if I am just sitting or lying around, here they come. I have had to go to a Pulmonologist because my case is complicated by bad asthma (requiring breathing treatments twice daily and changing my inhaler) and terrible sinuses revealed by a MRI (requiring nasal irrigation twice a day to avoid surgery). So new doctors look at me like I am from Mars. I just had my second set of Botox and have a question for you all. About a week after your shots do your eyes get "lazy" and harder to open? I look like I have spent an afternoon sipping Margaritas with my right droopy eye and left lazy eye. Anyone else have that? If I remember right, after the first set of shots, it took about 4-6 weeks (honeymoon period) for the eyes to improve.
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Posted by: Ann Doyle ®
04/16/2003, 11:13:36
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I've always thought of them as complete opposites. With Parkinsons' you want to move the muscle and it won't, with Bleph you want to stop the muscle moving and it won't.
Your DR. probably started you on a very low dosage. Most do and then build up.
I have Bleph/Meige. When I can't breath, I believe it is because my tongue is in the way in the back of the throat,
I complained about the lip movement and he said he didn't like to give Botox above the upper lip because it caused more problems. What he did do was give me a shot on either side of my nose half way down. It numbed my lip like when you have been to the dentist for about 6 weeks. It was OK but I had to eat everything with a spoon or fork. My lip wouldn't get out of the way to eat a sandwich or apple, etc. The next time he left it up to me. It is sort of a toss up if you are at work or dealing with the public. By the time my mouth is moving, I can't see good enough to work so I decided to go without. I would rather have the lip move all the time instead of being numb when I am with family and friends. They understand and if they don't , they better get used to it. Ann Doyle
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Posted by: Shirley-Arkansas-USA ®
04/22/2003, 03:21:22
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Hi Ann,
The injections on either side of the nose have also wiped out my upper lip in the past. The one positive thing that the doctor that I am now seeing (but soon not to be) is that he and I did work out the dosage and placement of that shot so that it worked without taking out my lip. I get 2.5 units on either side of the nose about midway with the needle being pointed upward. 5 units is too much there but the 2.5 units works. You might ask how much you were given there and try a smaller amount if that area really bothers you.Shirley in Arkansas who hates it when the upper lip has the droopy botox effect.
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Posted by: Ann Doyle ®
04/22/2003, 18:44:50
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I don't know your secret power but you always know the answer. Ann Doyle
Modified by Ann Doyle at Tue, Apr 22, 2003, 18:47:04
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