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NFT: Medical advice requested

Phil S : 10/8/2017 5:06 am
I know I need to take this up with my Doctor, but I assume some of the BBI faithful are Doctors and would offer their opinion. I was diagnosed with Parkinson's disease five years ago. So far I haven't suffered much.

About a month ago I started suffering from light headedness and dizziness. I went through a whole work up and no real problem was found except maybe low blood pressure.

My neurologist suggested getting off one of my Parkinson's meds because it can cause dizziness. He gave me a schedule to taper. A week ago I started suffering from anxiety and sleepless nights. I have gone for walks after midnight to try to relieve the problem. My sleep schedule is messed up with two hour naps during the day. The Doctor suggested going back to the old disease of the med which helped but did not solve the problem. What should my next move be?
IMHO  
BobOnLI : 10/8/2017 7:57 am : link
Get a second opinion from another neurologist. One specializing in movement disorders.
Yeah  
superspynyg : 10/8/2017 8:19 am : link
Parkinson's is terrible. Get a second before going forward.
You might benefit from a Parkinson's Disease Support Group  
bob_in_ec : 10/8/2017 9:02 am : link
www.pdf.org/support_list
www.parkinson.org/patients‎
https://www.michaeljfox.org
parkinsons.stanford.edu/onlineSGs.html

Sudafed can help with sleep - stay on your PD medicine

Good luck
One of my life long best friends has Parkinson's  
steve in ky : 10/8/2017 11:08 am : link
and it was diagnosed as pretty severe case, has had to have two brain surgery's already. But one thing he does that has helped to keep it advancing slower than the doctors predicted and expect for him was that he works out like a madman. He lifts weights daily and regularly rides his bike miles at a time. If he even misses a day or two he says notices a big difference (I assume with his muscle control).

I know he is on a lot of medication but I don't know which to offer any advise specifically about it, but they do dramatically impact his sleeping.

My only advise would be that after having seen what this disease has done to him over the past 12-13 years is that I would recommend taking any medicine that doctors believe would help with controlling the Parkinson's from getting worse even if they may cause some discomfort. The alternative of not keeping it under control is much worse.

I wish you well

Ask your doctor  
pjcas18 : 10/8/2017 11:28 am : link
about medical marijuana, not being a dick, but I have read that it has helped many Parkinson's patients with anxiety and sleep.

No conclusions have been drawn about real medical benefits of marijuana for Parkinson's, and it's very possible there are none, but naturally marijuana helps with anxiety and sleep so it's a logical treatment.

FWIW  
mainiac : 10/8/2017 11:56 am : link
I've had to taper off several different classes of meds, and my Dr recommended taper was not even close to slow enough.

Often 1 month was considered plenty of time, and I didn't understand why I was feeling so lousy until I researched on my own.

In fact i'm halfway through tapering off clonazepam at 6 months in (the worst!). But, a simple antidepressant still took me 3 months.

Dunno if that is relevant, wish you the best!!!

What brought on the dizziness  
Chocco : 10/8/2017 4:37 pm : link
Is/was it constant, is it when you change position? Did it get better or worse with exertion? Did it occur at a particular time of day?
Was it low BP or a drop in your BP. Sorry for all the questions
RE: What brought on the dizziness  
Phil S : 10/9/2017 2:37 pm : link
In comment 13636355 Chocco said:
Quote:
Is/was it constant, is it when you change position? Did it get better or worse with exertion? Did it occur at a particular time of day?
Was it low BP or a drop in your BP. Sorry for all the questions


I have low BP. The lightheaded condition usually comes from standing up or exertion especially walking up hill or stadning after sitting. Putting my head down usually relieves it. One time it came from going from very dark to very bright light.
RE: Ask your doctor  
Phil S : 10/9/2017 2:43 pm : link
In comment 13634853 pjcas18 said:
Quote:
about medical marijuana, not being a dick, but I have read that it has helped many Parkinson's patients with anxiety and sleep.

No conclusions have been drawn about real medical benefits of marijuana for Parkinson's, and it's very possible there are none, but naturally marijuana helps with anxiety and sleep so it's a logical treatment.


I have trouble believing that something you smoke has medical benefits. It always struck me that medical marijuana was an excuse to get stoned and claim it was for medical reasons. And don't get me started on Doctors who provide the permission cards. I would venture to say they never turn down a paying customer.
RE: FWIW  
Phil S : 10/9/2017 2:45 pm : link
In comment 13634876 mainiac said:
Quote:
I've had to taper off several different classes of meds, and my Dr recommended taper was not even close to slow enough.

Often 1 month was considered plenty of time, and I didn't understand why I was feeling so lousy until I researched on my own.

In fact i'm halfway through tapering off clonazepam at 6 months in (the worst!). But, a simple antidepressant still took me 3 months.

Dunno if that is relevant, wish you the best!!!


Yes I think that is very much what I am experiencing. The good news is that I slept for nine hours last night and feel no anxiety this morning.
RE: You might benefit from a Parkinson's Disease Support Group  
Phil S : 10/9/2017 2:47 pm : link
In comment 13634770 bob_in_ec said:
Quote:
www.pdf.org/support_list
www.parkinson.org/patients‎
https://www.michaeljfox.org
parkinsons.stanford.edu/onlineSGs.html

Sudafed can help with sleep - stay on your PD medicine

Good luck


I looked up sudafed and it shows insomnia as a possible side effect. Thanks for your suggestion on support groups.
RE: One of my life long best friends has Parkinson's  
Phil S : 10/9/2017 2:49 pm : link
In comment 13634843 steve in ky said:
Quote:
and it was diagnosed as pretty severe case, has had to have two brain surgery's already. But one thing he does that has helped to keep it advancing slower than the doctors predicted and expect for him was that he works out like a madman. He lifts weights daily and regularly rides his bike miles at a time. If he even misses a day or two he says notices a big difference (I assume with his muscle control).

Steve, has your friend looked into the medication in clinical trials in New Zealand NTcells?

I know he is on a lot of medication but I don't know which to offer any advise specifically about it, but they do dramatically impact his sleeping.

My only advise would be that after having seen what this disease has done to him over the past 12-13 years is that I would recommend taking any medicine that doctors believe would help with controlling the Parkinson's from getting worse even if they may cause some discomfort. The alternative of not keeping it under control is much worse.

I wish you well
RE: RE: You might benefit from a Parkinson's Disease Support Group  
Pete in MD : 10/9/2017 3:10 pm : link
In comment 13639356 Phil S said:
Quote:
In comment 13634770 bob_in_ec said:


Quote:


www.pdf.org/support_list
www.parkinson.org/patients‎
https://www.michaeljfox.org
parkinsons.stanford.edu/onlineSGs.html

Sudafed can help with sleep - stay on your PD medicine

Good luck



I looked up sudafed and it shows insomnia as a possible side effect. Thanks for your suggestion on support groups.

I think he might have meant Benadryl (diphenhydramine) and not Sudafed. For most people, Sudafed has a stimulating effect. (They do make meth out of it, after all.)
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