Hard time breathing when in "off" state

[bluedahlia]

Does anyone have this symptom when meds don't kick in. Sometimes it feels like there's an elephant sitting on my chest. My breathing becomes shallow and my heart rate goes up. I'm fine when my meds kick in.

Last time this happened I stopped taking amantadine for a while and then startred at a lower dose. I'm taking 200 mg a day now and wondering if maybe I should stop it again. Any advice would be appreciated.

[Stitcher]

bluedahlia...did you can you prescribing doctor?? If not, please do ASAP!!

Now...I am sorry you are having this problem. It may or may not be the Amantadine.

Hopefully someone can bring other thoughts to this thread.

:hug:

[bluedahlia]

Yes I had this problem a year ago and went to the ER. They performed a battery of tests and all checked out ok. Even went for a stress test and nuclear medicine scan of the heart. Im just wondering if it has to do with rigidity in my chest muscles causing the problem as it only bothers me when I'm in an off state. If it does get worse, I will definitely follow up with the doctor.

[Evon]

I have problems breathing when I have dystonia which is usually when I am getting close to the time for meds. Of course the cramping effects my left side mainly my leg and foot but lately is also in my left arm. It makes it hard for me to breath at these times, I assume it is the muscles in my chest that are cramping as well. Increasing my Sinemet seems to relieve all of the discomfort.

[reverett123]

...he points out that the diaphragm is a muscle and stiffens up with the rest.

I don't have the problems like yours, but I do get winded easily when I am stiff.

[bluedahlia]

Thank you for the replies. Makes me feel a wee bit better mentally, even though it's such an uncomfortable state to be in physically.

[chasmo]

dystonia of the diaphram to me too. Sounds like you might want to consider a DBS or a med change and\or the way you take them.

Charlie

[bluedahlia]

Thank you Chasmo. I'm 8 years into this damn disease......thought I'd have a few more good ones but between the dystonia and the dyskinesia, I have to consider doing something a little more drastic. I will be talking to my doc re. DBS. Hopefully I'll be a candidate.

I'm worried they may turn me down as I was diagnosed with breast cancer last year. Would they turn me down on the basis that I'd be a risky candidate as far as life expectancy is concerned? After all it is an expensive surgery and it would be government funded as I live in Canada. My cancer was stage 1.

[CTenaLouise]

Does anyone have this symptom when meds don't kick in. Sometimes it feels like there's an elephant sitting on my chest. My breathing becomes shallow and my heart rate goes up. I'm fine when my meds kick in.

Last time this happened I stopped taking amantadine for a while and then startred at a lower dose. I'm taking 200 mg a day now and wondering if maybe I should stop it again. Any advice would be appreciated.

dear bluedahlia,
I am also finding this out the hard way - I am having the hard to breathe
symptoms - we breathe too shallow -this is one reason -

I am on a mild liver detox - I have been having pain in my liver - I thought it was my mid to lower back -
I have just put a larger article about toxicity -
I have discontinued the use of my -toothpaste - the flouride is causing
my mouth to have what feels like burning - it is subsiding but I must
continue with the detox-

please read:
THE FLUORINE/FLUORIDE CULPRIT

The Parkinson's-like tremors are, likewise, also associated with the toxic substance, Fluorine/Fluoride.

It particularly affects the kidneys and promotes low blood pressure.
It causes the muscles to become flabby and degenerated. Fluoride destroys our will to live!
"Many commercial toothpastes contain cavity-fighting fluoride.
Each one of these tubes contains 1,000 - 2,000 mgs. of fluoride, enough to kill a small child who might eat the whole contents."
(Journal of Pediatrics 1987) People taking tablets containing one-half of one milligram of fluoride per day (the amount found in 1 to 2 pints of fluoridated water) can expect to experience:
Black tar-like stools, stiffness, bloody vomit, diarrhea, faintness, nausea and vomiting, shallow breathing, stomach cramps or pain, tremors, unusual excitement, unusual increase in saliva, watery eyes, weakness, constipation, loss of appetite, pain and aching bones, skin rash, and sores in the mouth and on the lips. (US Pharmacopia Volumes on Drug Information 1983 quotes Hannah Kroeger's book, GOD HELPS THOSE WHO HELP THEMSELVES.)

[vlhperry]

I have had PD for about 18 years now. Difficulty breathing is a major problem for me when my meds wore off. It could be caused by a couple things. If you suffer from dystonia from idiopathic PD, it could cause difficulty breathing.

Your symptoms sound as severe as mine, so I can't help but wonder if you could have a mutation in your Parkin gene which may cause a mitochondrial disease such as I have. See the following link for a clear idea of what mitochrondial disease entails. http://www.mdausa.org/publications/Quest/q64mito.html .

I found DBS surgery to be a lifesaving measure for me. It allowed me to cut way back on the amount of Sinemet I take as well as other drugs. I am not sure how the Canadian Healthcare System works, but you might consider talking to your physician about the possibility of sending a blood speciman to Allinia Diagnostics, which is the only American lab that will do a gene test for mitochondrial for commercial use. Participating in a research study is another possibility, but having the test results sent to you by a commercial diagnostic testing service puts the DNA information directly in your hands so you are able to research the more recent research which says what will or won't work for your particular mutation, should one exist. Research studies will not release any information to the patient.

I am so sorry to hear you have breast cancer to deal with as well as PD. There was another poster named Thelma who was also coping with cancer and PD. I haven't read any recent posts by her. She might be able to answer your question about cancer and DBS surgery.

Vicky

[harley]

i go into a real shallow breathing pattern. like getting enough breath , but just barely. and its very regimented. as soon as the meds kick in, one of the first things i feel is a release of air.. i take a dddeeeeppp breath. then it goes back into a normal breathing pattern

[bluedahlia]

Thank you all. I don't know how I missed your post Vicky, but I thank you for the info. I have a doctor's appointment in a couple weeks and will discuss a change in meds or start looking at DBS seriously.

Harley that's exactly how I feel. What a relief when those dreadful drugs kick in.

[ol'cs]

feeling like you are "not getting enough oxygen"? Well, the first thing i should say is that you get an immediate "feeling of anxiety", that''s why your heart rate goes up, you are scared. I thought that it might be the Amantadine too, but didn't think so after it went away.
Asked doctor for a "puffer" a bronchodilator (Albuterol) and it fixed me up very well, although not to be used only unless really needed. Doc (GP) didn't tell me any ideas, but i think some people here have it pinned down. Dystonia of the diaphragm or related lung muscles, leading to too much fluid in the lungs "pulmonary edema" (or too much "frothiness" of the liquid in the lungs upon breathing). IT could also be something more serious, say Cardiopulmonary Obstructive Disease, but unlikely, unless you are an asthmatic, heavy smoker.
It usually overtakes you in a laying down position, and is made better by getting up and forcefully breathing, while the muscles get in gear and the liquid drains. Try not to let it FREAK you out. That only gets more adrenaline going which helps to take care of the situation, but is harder on the heart. You could put out the bucks for an "oxygenation meter", which is a clip that you put on your thumbnail, and it gives you a readout of % oxygenation. Any number from 95-96 to 100, should put you at ease by letting you know that you are not in danger of suffocating (which is almost always not the case)

[joopoele]

you don't take ibuprofen do you?

[bluedahlia]

you don't take ibuprofen do you?

No I don't. The only other drug I take that is non-parkinson's is tamoxifen for the estrogen positive breast cancer I had. Will be on it for another 4 years.

[CTenaLouise]

I will pray for you dear bluedahlia...
:hug:

[bluedahlia]

Thank you Tena. They are welcomed.:)

[CTenaLouise]

dear ladybluedahlia,

our muscles wont allow the diaphram to stretch -because of many things,
however -that is why even though I do not love to take pills -
I take .5mg's of klonopin 3 to 4 times a day...
-

I have done all things to give a bit of peace to my spirit, sometimes it is to
hard - and I pray -simply -not too many words...because -I feel you really donot have to -and the words are not verbal -but from our hearts -to God...

[vlhperry]

After suffering with breathing problems, I asked my primary doctor to do a blood screening test. My calcium level was high. She then tested the hormones put out by the parathyroid and it was highly elevated. I am waiting to hear from my doctor as to what it means.

Vicky