sheer frustration!


Posted by pam bullock , Oct 29,2001,16:57   Archive
has anyone had any luck with a medication that helps the breathing problems that can occur? (spasmodic dysphonia has been ruled out!) It's all associated with the blepharospasm. Also, what types specialists do you see? Right now my father only sees the opthamologist that does the botox. I say we definitely need a neurologist also. I hate to sound ignorant, but isn't a neurologist normally seen for these disorders? I think if we could straighten or at least get some help for the breathing, he could resume somewhat of a normal life! I keep searching and searching for answers and ya'll are the best help I've gotten. I would like for him to try artane or something similar. Who writes the prescription for that? (he has seen one neurologist who really didn't offer any possible solutions.)



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Re: sheer frustration!

Re : sheer frustration! --- pam bullock
Posted by Shirley-Arkansas-USA , Oct 29,2001,17:34 Top of Thread Archive
Hi Pam,
In my opinion your dad would probably be best served by seeing a Neurologist that is a Movement Disorder Specialist. They are not all created equal and some are better than others. You will just have to shop around. I've posted a link that will help you get started with your search. This is a new doctor database for dystonia patients. The specialty will be listed as to whether they are Neuros or Ophthalmologists or whatever. The list does not promise if they are a good physician or a not so good one. You can also check with the BEBRF for a movement disorder specialist in your father's area.
Just look for your state and go from there and then make some phone calls.

http://www.dystonia-foundation.org/health/

As far as medication to help with the breathing problems, some people have gotten relief with small doses of over the counter Benadryl. You would need to check with your father's doctor but most people can take it without difficulty. It might make him sleepy and cause a dry mouth so he would need to be aware of that. You would just want to get plain Benadryl-with no other ingredients in it. No combination products. Besides the Benadryl, I believe that some have had their breathing problems relieved a little with Klonopin which is a prescription drug.
These are only a couple of suggestions. If it is ok with your dad's doctor, I personally would give the Benadryl a try and start looking for a good Neurologist that is a Movement Disorder Specialist (MDS) and then go from there.

We have several people on the bulletin board that have breathing problems with this and they will hopefully respond to you, also.
Pam, most of us are looking to resume somewhat of a normal life. It is a difficult thing to do and something that we struggle with on a day to day basis. I wish you luck and think that you are high up on the list of wonderful daughters. I keep a list in my head and you are on it.

Shirley in Arkansas with BEB and Apraxia




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Re: sheer frustration!

Re : sheer frustration! --- pam bullock
Posted by Dee in OR , Oct 29,2001,19:52 Top of Thread Archive
Hi Pam,

I have trouble breathing and I haven't found a medication yet that helps. I did find an article that discusses this issue but doesn't really give any solutions. About the only thing that helps me is to lay on the floor on my back with my knees bent and feet flat on the floor and press my lower back into the floor. Most of the time I feel like I am being squeezed in a vice. I even went to a cardiopulmonary specialist and there was nothing he could do. I can't take benadryl - it makes me hyper.

Dee in OR who wishes she had a better solution for you. Related link: http://www.dystonia-support.org/Library%20Table%20of%20Contents.htm




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Re: sheer frustration!

Re : sheer frustration! --- pam bullock
Posted by Virginia , Oct 29,2001,21:06 Top of Thread Archive
Yesterday after our local support group meeting, a lady came up to me and asked about my breathing - she does exactly the same thing I do. (She said she waited til the meeting was over in case it embarrassed me - obviously she doesn't know me well.) So far I don't know of anything that really works, but I'm still trying. I went to a MDS (a neurologist who specializes in Movement Disorders) recently who is going to try several medications to see if something will work. He said Benedryl is usually too sedating (it was for me, but not for everyone) and that Artane usually has too many CNS side effects (again, not for everyone). But we're working on it. Your father needs to find a doctor who will try to work with him. And if he does find something that helps, let us all know. Lying down helps me, too. Sudafed sometimes helps, but can raise blood pressure. It's still a work in progress.

Virginia in AL (where the 2004 BEBRF conference will be held)




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Re: sheer frustration!

Re : Re: sheer frustration! --- Virginia
Posted by catherine pender , Oct 29,2001,22:09 Top of Thread Archive
I have posted this before and I don't know if anyone has tried it.
I occasionally use childern dosage of dramamine (motion sickness meds.)
I find this helps with the breathing. I use a product called Gravol in Canada. I don't know the name in the US but you get it from the pharmasist.
Hope this helps

Catherine in Calgary who just got back from the eye doctor and found out that I do not have a stye but a Herpes simplex keratis which is like a cold sore on the cornea. ( I had shingles when I was in my early 20's.) Apparently the virus
can remain dormant in the body and in 25 percent of case stress can cause it to replicate within the conreal epithelium. The nurses on the board could explain all this much better than I.
Being sent to another doctor tomorrow as this is much more serious than the doctor originally thought




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Re: sheer frustration!

Re : Re: sheer frustration! --- catherine pender
Posted by Sally - in - Idaho , Oct 29,2001,22:15 Top of Thread Archive
Hi Catherine ... I'm glad you got some answers and your eye will finally be treated for what is actually wrong. Good luck and a speedy recovery to you!

Sally in North Idaho where it is drizzling.




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Re: Correct Diagnosis

Re : Re: sheer frustration! --- catherine pender
Posted by June in Toronto (June Floyd,June in Toronto), Oct 30,2001,11:23 Top of Thread Archive
Glad you got a correct diagnosis for your eye problem, Catherine - Herpes simplex keratis sounds awful! Hope you get relief soon.

June in Toronto (beb/meige)




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Re: Conference 2004 in Alabama

Re : Re: sheer frustration! --- Virginia
Posted by Shirley-Arkansas-USA , Oct 30,2001,16:36 Top of Thread Archive
Hey Virginia, does this mean that we can all stay at your place? Please, please, pretty please? We'll even humor you and let you take us on a tour of the Botanical Garden. :-)
Carl can bring us all warm washcloths every morning and collect our sleepmasks to be laundered. Don't worry about beds-we can all bring those blow-up air beds and our own sheets and quilts and have a slumber party.
Start planning now. This is going to be the most company you have ever had.

Shirley in Arkansas




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Re: Conference 2004 in Alabama

Re : Re: Conference 2004 in Alabama --- Shirley-Arkansas-USA
Posted by Virginia , Oct 30,2001,17:11 Top of Thread Archive
I'd love to have you all even if I had to go out and buy extra washcloths. The only problem is that I live 100 miles away from Birmingham (which is where the conference will be) and that's a little long for a commute.

Virginia in AL




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Re: Conference 2004 in Alabama

Re : Re: Conference 2004 in Alabama --- Virginia
Posted by Shirley-Arkansas-USA , Oct 30,2001,17:22 Top of Thread Archive
Don't even try to get out of this over a little measly 100 miles. It would be worth it for the warm washcloth from Carl in the morning, anyway. Possibly we could have bulletin board registration for the conference at your house for say a couple of days and then proceed on to the conference. That would work for me. :-)

Shirley in Arkansas who is really looking forward to the 2004 conference even though it is a ways off. You started this Virginia so don't try and weasel out of it.




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Re: Conference 2004 in Alabama

Re : Re: Conference 2004 in Alabama --- Shirley-Arkansas-USA
Posted by Delaine Inman , Oct 30,2001,20:53 Top of Thread Archive
I agree with Shirley. We can stop at Virginia's as a rest stop and have a big sleep over on our way to the convention. You can stop at my house too. Don't expect Rusty to get up until late, so Roy will just have to fill in for Carl until we get to Virginia's. I'm only about an hour north of Huntsville and I have plenty of room inside and outside for pallets. Anybody country enough for a homemade quilt pallet? Those out West can stop at Shirley's, then it is 5 hours to my house and then just another hour to Virginia's and then 100 miles to Birmingham. I can get quite a few people in the Van. If it is too much you can stay here on the way back and at Virginia's on the way down or vice versa. I'll have most of the yard made into flower beds by then and you can pretend it is a real botanical garden. I'll need more Garden Fairies to give me a hand, but I'm so glad I have a real goal here to get it done by 2004.



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Re: Conference 2004 in Alabama

Re : Re: Conference 2004 in Alabama --- Delaine Inman
Posted by Virginia , Oct 30,2001,22:52 Top of Thread Archive
I'm fine with that, but we'll have to do the quilt pallet thing here, too. I'll send my Garden Fairies up your way to help out. Three years notice is not bad. You can do it.

Virginia in AL, where the trip to the botanical garden is mandatory - non-negotiable.




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Re: Conference 2004 in Alabama

Re : Re: Conference 2004 in Alabama --- Virginia
Posted by Alan Phair , Oct 31,2001,14:09 Top of Thread Archive
Virginia, the last time I was in Alabama was when I was in the service back in the 60's. I was stationed at Fort Rucker (we always substituted the R in Rucker with the 6th letter of the alphabet as that place was horrible. It was near Dothan Alabama if I remember right. I can remember being flown in and the airline terminal consisted of a part bench along side the runway. Being a Yankee back then was not that easy and I am sure that things have changed over the years and I look forward to going there in 2004. I just don't know if "you all" will be able to understand my accent however.

Seriously, I hope you took this "tongue in cheek" as the saying goes. I actually made some very nice friends during my short stay there. The airstrip story is actually true however and I will never forget being just dropped off there and sitting on that park bench for over an hour until an Army bus came to pick me up....Alan




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Re: Conference 2004 in Alabama

Re : Re: Conference 2004 in Alabama --- Alan Phair
Posted by Virginia , Oct 31,2001,16:39 Top of Thread Archive
I do understand the tone of the post - no offense taken. When I found out I was moving here in the early 70's, I didn't expect to like it or to stay long. Thirty years later, I'm still here and can't imagine living anywhere else. Some parts of Alabama probably are still as you remember. Huntsville is in the extreme north of Alabama and is (believe it or not) a technology center. We developed the rockets that put men on the moon. And we joke that there are few native Huntsvillians (more now than when we moved here). So at least up here, we're used to "foreign" accents. Birmingham is a little different from Huntsville, but a lot different from Fort Rucker in the 60's. I think you will find Alabama not at all as you remember it.

Virginia in AL, where we'll still say "Y'all come back"




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Re: sheer frustration!

Re : sheer frustration! --- pam bullock
Posted by Kelly Saffell , Oct 30,2001,08:48 Top of Thread Archive
I see both an opthamologist and mds on a regular basis. The eye injections for beb work best from the opthamologist but the neurologist gives me injections for meige and prescribes klonopin. My breathing problems are very mild so I don't have any answers for you there.

Kelly in Dallas




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