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Strange side effects and is it Parkinson's related?

snorre profile image
8 Replies

Is it normal that when I wake up in the morning I feel fantastic but after taking my medisin (Sinemet 25/100 ) (the second dose) i feel worse thenthe first one (dose)

I would expect to be better during the day taking more medisin?

Also , i have some strange sideeffekts ore whatever it is.

In the evning and at bedtimes i have some problems with hyperventilation.

My troath feels narrowd , stiff and i start to hyperventilate.

I have trouble breathing and my blood pressure rises to 180, very uncomfortable,

My doctor has given me up.

Is this Parkinson's related?

My neurologist has apparently also given me up. Does anyone have any suggestions on what this might be?

When I fall asleep it takes an hour or two before I fall asleep and then the problems with the throat narrowing and the hyperventilation is ok. If I wake up again after a short sleep and do not think about the problem, I fall asleep again without problems.

If, on the other hand, I think about the problems with the throat and breathing, then the whole process starts again. I can therefore start the process of thinking about the problem but can not stop the process and then it easily takes another hour before I get to sleep.

Has just been examined for anemia but was just told that everything was fine there.

Actually starting to wonder if it's Parkinson's I have?

Hope someone recognizes themselves in this.

Absolutely awful to have it like that.

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snorre profile image
snorre
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8 Replies

Hi snorre,

It sounds like you are suffering from some fairly bad anxiety...

FYI, I take sertraline for anxiety, and it has helped me a lot... it reduced my anxiety significantly, which in turn greatly improved my sleep...

park_bear profile image
park_bear

During sleep, dopamine has a chance to accumulate in the brain, so it is not unusual to feel good upon waking.

The urge to hyperventilate at night is also not unusual. In my case my airways are clear and my oxygenation is normal. I respond to this urge by deliberate slow deep breathing.

Dragona profile image
Dragona

I had something similar, I don’t have Parkinson’s, but mine was thyroid related

JMSL profile image
JMSL

I've had something quite similar & I had a respiratory & cardiac work-up with everything turning out normal. None of the MDS/neurologists seem to think it's a side effect of the carbidopa-levodopa but I am 100% certain it is! The timing of those types of symptoms seem to qualify it as a type of "off" symptom for me. And taking deep & slow breaths rarely helps me deal with them. I haven't tried breathing into a paper bag yet. Generally I just need to be sure to take my med early enough to avoid the issue. I do also take a small dose of mirtazapine (7.5 mg) every evening, which has helped, too. This is an antidepression med that has been found to help anxiety & sleep issues for some PwP. Also I had a couple of acute anxiety attacks where those types of symptoms really got out of hand. They appeared to be triggered by Entacapone the first time & I think Rytary the second time. I quit taking those meds & rarely have the issue after that (as long as I take my regular C/L pill on time.

Grasss1973 profile image
Grasss1973 in reply toJMSL

Agree with you completely. At first I thought it was the caffeine in my coffee until my husband told me that he had been using decaf for at least a couple of weeks prior. I get these symptoms intermittently but seem to be better controlled as long as meds are taken on time and no eating until 30 minutes after a dose.

Hikoi profile image
Hikoi

Hi snorre

Breathing problems are real and are PD related. See this article.

atlasofscience.org/breathin...

IMHO i think this could be an off symptom or a peak dose symptom, or maybe both! I suspect you have a build up of levadopa during the day and by evening you or more accurately your body is reacting this way. It is scary so anxiety will compound it. I would certainly be trying something to help you sleep as suggested above and maybe try and reduce your cl amount if you are able to see if this helps.

My friend has dystonia of the diaphragm and was told the only treatment is DBS.

snorre profile image
snorre in reply toHikoi

Thank you so much for all the great answers. It is inconvenient to have such a condition that is constantly increasing in scope and doctors and neurologists who do not understand anything. I went to a neurologist 3 days ago and was told that this was not Parkinson's related.

So if I am not allowed to breathe one night in the future and need medical help, what should I say?

What worries me is if this warns me that something is wrong and that I am using up the time window on nonsense?

I have been complaining about this situation regularly now for about 1/2 year and what has also changed is the blood quality.

Have been to an expert on anemia but have recently received confirmation that I do not have anemia.

I take sinemet 25/100 7 times daily with 2 hours between each dose and 1.5 tablets each dose.

Wondering if I have met the limits of the dosage on the sinemet?

Is at times very dizzy and has to sit down because it turns black. The pressure can drop to about 75/45 and then there is little to go on.

Sprinkled here one day with warm water and fainted.

But I am comfortable with this as I know that the low pressure is due to the sinemet

So the right thing to do is to try to reduce the dose of the sinemet and see if it helps on the low blood pressure ?

I do not see any pattern in this.

Shortness of breath can be activated by food, sinemet, mental.

When I think about the problem, my throat tightens and I get short of breath which in turn affects my blood pressure.Just thinking of it aktivate it.

Maybe I'm depressed too?

So what do I do when healthcare professionals give up?

But thank you for all the answers and greatly appreciate receiving tips and ideas on what this might be

Grasss1973 profile image
Grasss1973 in reply tosnorre

snorre One more thing you could try is to cut your pills such that you can decrease the dose to one and one quarter pills 7 times a day with the same mealtime schedule.

A small dose of an SSRI or SNRI would probably help a great deal with sleep, anxiety and generally stabilize your mood which is clearly getting jerked around by the Sinemet.

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