breathing problems


Posted by pam bullock , Jun 10,2001,17:26   Archive
My father is 65 years old and has blepharospasm (3years). He is now having trouble breathing. What kind of dystonia affects your breathing. It is so hard to get an appointment with a neurologist who specializes in dystonias. We have one at Duke on July 31st. I am scared to death that his NOW healthy heart will overwork itself with him trying to breathe normally before we get to see the doctor. Any advice is most welcome! I will get back on the phone tomorrow in search of a qualified doctor that will see him ASAP! Any ideas?



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Re: breathing problems

Re : breathing problems --- pam bullock
Posted by Mindy , Jun 10,2001,21:14 Top of Thread Archive
Hi Pam,
Quite a few of us have breathing problems that somehow
tie in with BEB.
What type of doctor has been treating your father for BEB the last
3yrs?
You can take your father to his regular family doctor
to check his breathing, just to rule out any other problem that could cause him to have trouble breathing.
If he says he's fine, ask if your father can try over the counter Benadryl, until he sees his specialist. Benadryl helps a lot of
people, even helps their eyes.
My breathing is helped with Lorazapam (Ativan)
Try to keep him calm, reassure him he's ok. and see if you can
get him to breathe slower and deeper, rather than fast and shallow.
It's very scary feeling when you can't breathe.
Mindy in NY



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Re: breathing problems

Re : Re: breathing problems --- Mindy
Posted by pam bullock , Jun 11,2001,08:34 Top of Thread Archive
We have seen a pulmonary specialist and everything was fine with his lungs. Then we saw a specialist for Spasmodic Dysphonia and that was ruled out. We have an appointment at Duke for July 31st, but that is such a long time and frankly, I'm scared to wait that long. It feels like we are being run here and there and not getting any answers. I guess the doctors just don't understand the urgency. I know this is selfish, but I want my Dad helped NOW! Thank you for your response, it's good to know that I have someone to air all this out with!
Again, Thank you,
Pam Bullock



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Re: breathing problems

Re : Re: breathing problems --- pam bullock
Posted by Joanne Matuzas , Jun 11,2001,11:50 Top of Thread Archive
Pam,
I understand your concern but there are no fast answers with this
disorder. Mindy mentioned you could try some benadryl. I have the
breathing difficulties and that helps me some. Also, she mentioned
Ativan which is part of a class of drugs called benzodiazepines--I believe they act as mild tranquilizers by calming the nervous system
down thus slowing spasms. Many of us are helped with these meds. Check under www.dystonia-foundation.org for treatment options/oral medications. Perhaps the doctor would consider prescribing one of these until your father has his appt.in July. Take care and hope this helps.
Joanne M. San Diego, CA



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