Re: for those of you with breathing problems
Judi
Could you please elaborate on how it was diagnosed and your specific symptoms besides shortness of breath, if any.
Thanks,
Virginia in AL
Re: for those of you with breathing problems
I started with eye problems, and after a very long haul was diagnosed with BEB. A few months after starting with eyes drooping and closing (and before BEB diagnosis), I had a very rapid onset of shortness of breath). I started BEB and Cervical Torticollis Botox injections last July and had taken Benadryl, Scopolamine Patch, and finally Elavil to control the shortness of breath. My voice started deteriorating a few months ago so my neuro who does not do Spasmodic Dysphonia sent me to UNC ENT. That was where I was diagnosed and given Botox for the first time time. I am now off all of the Elavil. I have an element of paroxysmal laryngeal spasms also. They were stopped during the first month after Botox, but I've had two episodes this week so am gong to have another set of Botox May 2nd. Hope that's the info that you're looking for.
Re: for those of you with breathing problems
Thanks for the info, Judi. I am still not clear regarding your voice--
you say it started deteriorating. Did the Dr. diagnose you with SD?
If not, did they give you the botox around the vocal cords for this
paroxysmal laryngeal spasms only? The ENT Dr. dismissed me because I
don't have any voice problems or SD. From what you say, do you think
it is possible that I might get these injections around the vocal cords
without having SD and still have that possibly help the breathing? It
probably depends upon where the breathing problem is originating.
Thanks for your response and patience with me. Joanne M. CA
Re: for those of you with breathing problems
Hi Joanne,
I have noticed that when my eyes are doing well on a medication, my
breathing problems go away.
I doubt a doctor will give you botox for breathing problems, because
it could interfere with your voice and swallowing.
When my neck used to fall forward, that was the reason the doctor gave me for not injecting the front of the neck.
I know there are some people that get relief from Benadryl.(not me)
Best Wishes,
Mindy
Re: for those of you with breathing problems
Mindy, thanks for the input. Thanks Judi also. This breathing problem
has been a real challenge for both myself and my neurologist so any
info I can get helps. I'll keep plugging until I get better control
of it. Joanne M. CA
Re: for those of you with breathing problems
The main reason that I do receive Botox in the muscles surrounding the vocal cords is to prevent the spasms that cause not only the voice problems, but the breathing problems. My voice is not in bad enough shape to have them for just speaking.
Re: The importance of sharing
I think no matter how many times we post, what helps one doesn't mean it will help the next one, and what gives one bad results, doesn't mean it will be bad for the another, can not be said too many times.
I think we should be encouraged to try what we feel can help. Do not get
discouraged. We have the privlige of hearing from so many regarding
our individual symptoms. What we find helps us, is not always found in books or from our doctors. Even if it has been said before, say it again, for the benefit of someone new, or someone who is experiencing
a new symptom for the first time. What you share is important.
And then go on and share with your doctors what is helping others, let's help them open their eyes.
Re: The importance of sharing
Sometimes when i am eating i chew & chew my food but my swallowing reflex is goneso i just quick eating.Ifell like acow chewing its cud. colleen IL
Re: The importance of sharing
Well said, Mindy, I second that.June in Toronto
Re: for those of you with breathing problems
Oops, forgot to tell you how it was diagnosed. I had a speech therapy testing session after seeing the doctor. He suspected SD, but she confirmed it.
Thanks
That was exactly what I was looking for. Thanks for replying. You didn't mention SD in the post and I didn't remember it from the past. I had wondered if your voice was involved and possibly swallowing or choking.
Virginia in AL
Re: for those of you with breathing problems
Judi,
As follow-up to Virginia's request, were you actually diagnosed with
spasmodic dysphonia? I have the breathing problem and when I went to
the ENT surgeon, he determined I do not have spasmodic dysphonia, hence
no injections surrounding the vocal cords. They are diagnosing diaphragmatic spasms. I can't help but wonder if
those injections might possibly help with my breathing anyway!!
I await your response. Thanks. Joanne M. CA
Re: for those of you with breathing problems
My ENT MD is a specialist in SD, but also treats other types of ENT diseases. I believe that he is a surgeon also. Anyway. He did mention that if my breathing problems were caused by diaphramtic dystonia then Botox would not help. He and one of my speech therapists will be doing a presentation at the Greensboro, NC symposium in October. Unfortunately, I shall be in Virginia the weekend they are doing that. Hope this and my previous posting help you out.
Re: for those of you with breathing problems
I was just on the SD BB and saw an item heading that you might want to check out. It is FYI for Diaphramatic or Dyspnea and Dystonia. To get to the SD BB go to the bottom of this BB and click on Dystonia BB. At the bottom of that BB is the link to the SD BB.
Re: for those of you with breathing problems
Thanks Judi, I have already checked this out. Joanne M. CA
Re: breathing problems
Hello Judy
I was interested to read your posting along with others re breathing problems. I have a problem with breathing too but mine, my doctor has suggested, is due to the stress surrounding the problem with my eyes. At times I have trouble speaking as I am so short of breath. I am going to have instruction from a breath specalist who will teach me how to breath properly. I can relate to this? Any comments please. I would hate to think I have to take drugs for this problem. Sometimes I think doctors use drugs when there may be other solutions. Any comments please.cheers Pam from New Zealand where the weather is not good for Easter?
Re: breathing problems
Pam
I can totally relateto the breathing problem. I did have the problem just after I was diagnosed with BEB. I also felt like I was always gulping for air. My eyes would stay open when I talked but closed when I was listening. I have since had surgery last year and doing very well. I have mentioned this before and I don't know if anyone else has tried it but I took Gravol which is a medication for motion sickness. I don't know what you would call it there. I took the childrens dose and found that it helped with my breathing and anxiety.
Fortunely I rarely use it now. Only in very stressful times when I am feeling anxious. The adult dose can make you very sleepy.
Catherine in Calgary
Re: breathing problems
Perhaps Gravol is an anticholinergic medication. The medications that work for people here in the US are Benadryl, Scopolamine, Elavil, etc. They all have anticholinergic properties.
Re: breathing problems
No I do not have shares in the Company that makes Gravol. It is called dramamine ( spelling?) in the US used for motion sickness. I swear that it really helps with the breathing and there are no side effects especially if you take the children dosage If you are having trouble sleeping at night I take 1 adult dosage. It is non habit forming and no hangover if you take it early enough. Do not try taking it at 1.00 am if you have to get up in the morning but works well at regular bedtime because it wears off by morning
I have mentions this product before but has anyone tried it?
Catherine in Calgary
--modified by catherine pender at Fri, Apr 13, 2001, 12:23:47
Re: breathing problems
This is weird, weird, weird...but here goes. A couple of weeks ago, I had a strange sensation for 2 nights in a row, which is unexplainable and very strange. I forgot how to swallow. My sinus's were draining, and I could feel it in the back of my throat, but I couldn't swallow. I tried, and had the reflexes which occur just prior to swallowing, but I couldn't get myself to actually swallow. It happened 3-4 times over a 2 night period and then was gone. Any idea's?
Re: breathing problems
Joanne, I suspect or at least hope those were isolated incidents for you. There have been a few occzsions where I have attempted to swallow
and it just didn't happen so I relaxed for a minute and was then able
to swallow. What concerns me regarding this is that as a result of my
breathing difficulties, I was referred to the ENT surgeon for check for
SD and anything else that might be irregular in my throat area. He
concluded I do not have SD but did ask if I ever have trouble swallowing. I remembered the two isolated incidents but told him no.
There are some of us with this disorder who do have trouble swallowing
and I am not sure if there is a botox solution for that as there is for
SD. Interestingly enough, botox injections around the vocal cords
for SD can sometimes cause difficulty swallowing. I would relax and forget about it and hopefully you won't have any further reocurrences. Maybe it just had some kind of link to the fact that your sinuses were draining. Hope it doesn't sound like I am talking in circles but
sometimes this disorder seems that way to me. Vicious circles!! Keep us posted. Take care. Joanne M. CA
Re: breathing problems/Swallowing
My sinus' are very bad right now - and have been since the day I had my last botox injections on March 7th (same thing happened when I had the injections before that!). Because my sinus' are so bad, my breathing is affected - I cough, choke a bit and its hard to breathe sometimes. I'm seeing the neurologist on Friday to try and figure out why I had so many side effects this time.June in Toronto
Re: breathing problems/Swallowing
I'm having the same problems - coughing, choking, some trouble swallowing and difficulty breathing. I couldn't get in to see a neurologist (I was picky - didn't want to see just anybody) until July, so keep me posted on your situation. I've never been to a regular neurologist and had a heck of a time getting in - all my BEB treatment has been with a neuro-op and an ocular plastic surgeon. I'm looking forward to seeing him and (maybe) getting answers about some of the non-eye related problems I've been having.
Virginia in AL, where summer has retreated and we may have freeze warnings.
Re: breathing problems
I've had that problem off and on for much of my adult life. It is a very weird sensation, isn't it. There's nothing to do for it, but try to relax and finally the ability will return. I had not had an episode in several months, but had one a few nights ago.
Re: breathing problems/swallowing problems
I used to have problems swallowing food. When this happens it's best
not to dwell on it, just eat easy swallowing food like macaroni, and
foods you do not have to sit and chew.
Re: breathing problems
Joanne, I have had the same thing happen to me on several occasions. I just couldn't swallow no matter how hard I tried. It wasn't a problem when I ate, but if I tried to do so without anything in my mouth, I just couldn't. I assumed that it had someihing to do with the botox inj. I get in my neck and mouth area. It went away about as fast as it came and never though about it until you just mentioned it. Strange how we run into similar situations with this disorder..Alan
Re: breathing problems
Alan, it is very strange. Especially because I don't get botox in neck or mouth area. It felt like I had forgotten how to swallow. Not that I couldn't, but my mind was not connecting with the reflex needed to swallow. I am not going to worry about it...just wanted to know if anyone else had experienced this. On a lighter note...had the wonderful experience of Aruba last week. Now I understand why you lke it so much.
Re: breathing problems
I have multi-focal dystonias. That means I have more than one form of dystonia - BEB, SD, and ST (Spasmodic Torticollis). I also have paradoxical vocal cord spasms (that is apparently what is causing the breathing problems). I was on medication because it completely got rid of my shortness of breath. I was able to get off the medication when I had Botox for my SD since it also apparently did not allow the paradoxical vocal cord spasms to occur either. The neurologist who takes care of me for BEB and ST had not heard about respiration problems. The ENT neurologist that I go to for SD said it is uncommon, but a physical, not psychological, problem.
Re: breathing problems
Hi Pam,
I was told by doctors my breathing problems were due to stress also.
This was years ago before I came to the BB.
Since being in touch here, and with others with ST, I have learned there are many of us who have the breathing problems. I think it was
Judi who mentioned the feeling of gulping for air, that's what mine
felt like. It did cause some problems with speaking at times.
At one point I felt as if I couldn't remember the correct way to breathe.
If a speech therapist can help, I would say go for it.
I was going for biofeedback and I told the therapist I have a hard time
reading out loud because my eyes shut. When I am at work and have to
read patient information to someone on the phone and my eyes shut, it
makes me sound stupid.
The therapist taught me to start off reading 3 words at a time, then
breathe.
Mindy in NY
Re: breathing problems -Mindy
Thanks Mindy
I can relate to your comment on forgetting how to breathe. I have been a little better over Easter. We had a quiet weekend, not much exercise and I am sure it helped my eyes. I have not had any help yet as I am waiting to see what the Neurologist comes up with next week. My first appointment so I am hoping for some answers. I read the BB a lot and my problem is minor compared to some. I think you are all so brave at getting on with your lives as well as you can. Keep it up. There are new soluitions to all kinds of problems surfacing everyday.Cheers to all from Pam in NZ
Re: breathing problems -Pam
Hi Pam,
I wish you the very best with your appointment next week.
It's a good idea to bring all your questions written on paper.
Leave a space after each question, so you can write the answer.
Makes it much easier than trying to remember.
In the beginning I used to bring a little tape recorder, the doctor
didn't mind at all.
I would love to know what your doctor has to say about the breathing.
I was not brave in the beginning. I have learned many wonderful lessons
on my way to where I am now.
hugs,
Mindy in New York
Re: breathing problems
When the Botox in my eyelids has worn off to a certain point then I have to tell people that I can either talk to them or look at them. They have their choice.
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