Orthostatic hypotension: I am trying to... - Cure Parkinson's

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Orthostatic hypotension

Bowling55 profile image

I am trying to deal with being dizzy and sometimes fainting. I am transitioning from Sinemet to mucuna . My dosage was 7 1/2 pills a day. 1 extended at night and 1 amantadine in the morning and 1 at night

I have increased my water intake and taking essential oils to increase my blood pressure. My neurologist wants to put me on another medication to increase my blood pressure. I will not take it. I appreciate any suggestions you have thanks

25 Replies

Listen to your doctor?

Bowling55 profile image
Bowling55 in reply to

May I ask why you say so?

in reply to Bowling55

Perhaps you can elaborate on why you won't take the medication they are suggesting?

Bowling55 profile image
Bowling55 in reply to

My goal is to get off of medications.From what I’ve been reading 0H is a side effect PD meds. If I add another medication that med could have another set of side effects. Then once you start you just can’t stop because you don’t like What it’s doing to you.

Bowling55 profile image
Bowling55 in reply to Bowling55

I meant you can’t stop abruptly.

Kmoore464 profile image
Kmoore464 in reply to Bowling55

Same here. I don’t take your meds. I take requip for rls and was told to take Florinef for OH. I take 8 different meds. OH is a side effect of several of them. So I’m trying to stop the meds I can. I recently stopped ability and gabapentin and I feel so much better. I no longer have trouble waking up and I have a ton more of energy now. My cardiologist told me to add salt to my diet and stay hydrated. My symptoms have improved. Sent me to neurologist to determine cause. Neurologist said it could be a neurological problem. Two cardiologists said my heart was fine. I never fell I just felt like I was going to black out. I now try to take my time getting up. I understand why you don’t want to add more meds to your regimen. I don’t either unless I have no choice.

bookish profile image
bookish in reply to Kmoore464

Might be worth looking at Small Fibre Neuropathy and dysautonomia. Similar signs and symptoms with POTS etc so may be some treatments in common which you could discuss with your doctor. Have a look at Dr Anne Louise Oaklander (Google Oaklander YouTube) - best one is Small Fibres, Big Pain (Radcliffe) and Dr Brent Goodman (Google Brent Goodman YouTube) - try Sjogren's Syndrome & The Autonomic Nervous System. Best wishes

Bowling55 profile image
Bowling55 in reply to bookish

I did check that out it's very informative. Thanks

BlueHawaii profile image
BlueHawaii in reply to Kmoore464

I am on gabapentin too. I have developed neuropathy, and some say it can cause neuropathy. I am so confused, because some say they take it for neuropathy, and that it helps. Did you find it hard to quit taking? Did you stop all at once?

Kmoore464 profile image
Kmoore464 in reply to BlueHawaii

Gabapentin is very hard to get off of because it also treats rls along w my requip. Pain doc had me taper off from 600 to 300 to 100. So far it’s working. I took 100 for two weeks. In the past my rls got worse but .5 requip is working pretty well

BlueHawaii profile image
BlueHawaii in reply to Kmoore464

Thank you! I hope you will do well with your med changes!

Bowling55 profile image
Bowling55 in reply to Kmoore464

Thanks for understanding.

My husband has a history of high and low blood pressure. His first symptoms before diagnosis were extreme apathy, diagnosed as depression, and orthostatic hypertension. Previous to this, he had high blood pressure, and was on medication.

He was prescribed Florinef for the low blood pressure. It worked very well and he had no more falls. After a few years, probably 4 or 5, his blood pressure went up, so he came off the Florinef and on to high blood pressure medication. Over the previous 12 months, he'd developed bladder problems, which disappeared as soon as he stopped taking the Florinef.

Now his blood pressure can be high or low. 😫 He's been taking mannitol for about 4 months and I feel his blood pressure isn't dropping as low. It very rarely goes below 100/70.

What about the B1 protocol. There's a Facebook site for it, although chartist, on this site, knows and has posted lots of information on it. We tried it, but it sent my husband's blood pressure thru the ceiling, which is very unusual apparently. It might help you though.

I hope our story helps.

Gwendoline

Thanks for your response. Your story does help to give me more insight. Thats the medication my Dr. Suggested

Florinef did it’s job well, without any visible side effects for a long time. My husband’s later problem isn’t listed on the possible side effects. It’s all a balancing act, isn’t it.

Have a look at the Mannitol research. Our neurologist was amazed at my husband’s improvement when I told him what he’d been taking. In fact, he sent us info on the trial now being conducted in the US after he researched it himself. The fact that it has been used in hospitals for brain injuries and brain surgery since the 1960s and hadn’t been researched significantly since, until a VIP in Israeli got PD and raised the research funds is very sad. See syncolein.com and watch the video.

Keep us informed

Gwendoline

Thanks so much🤗 I hope your husband is as well as he can be.

In case you do not already have one, you need to have good blood pressure cuff, because:

We humans possess a quick acting blood pressure regulation system which serves to maintain constant blood pressure in any posture – lying, sitting or standing. When this system fails the result is orthostatic hypotension, AND likely supine hypertension – dangerously high blood pressure upon lying down. I am talking over 200 systolic. This is why you need the blood pressure cuff - you may be in stroke territory lying down and you may need to sleep in a reclining position instead. You MUST know your evening supine blood pressure before trying to raise your standing up blood pressure - without it a dangerous situation could get even worse. In the medical literature on orthostatic hypotension MDs are cautioned to check for supine hypertension.

The next thing to understand is that we also possess a slow acting blood pressure regulation system that takes many hours to adjust blood pressure. If you suffer from orthostatic hypotension your average blood pressure will be too low during the course of the day. The end result is your blood pressure is at its highest at the end of the day. Likewise your blood pressure will be too high lying down at night. As result your blood pressure is at its lowest ebb upon rising.

After you have measured your blood pressure upon lying down in the evening we can discuss how to raise your blood pressure safely.

Bowling55 profile image
Bowling55 in reply to park_bear

Thanks so much I do have a blood pressure cuff I will measure it at night before bed thank you so much.

park_bear profile image
park_bear in reply to Bowling55

Also CoQ10 has been shown to relieve orthostatic hypotension. See:

healthunlocked.com/cure-par...

Just in case, might be worth looking into Small Fibre Neuropathy. Have a look at my reply to Kmoore464. Cheers

Bowling55 profile image
Bowling55 in reply to bookish

Thanks I will do.

Bowling55 profile image
Bowling55 in reply to bookish

How do I locate? I am new on this site

Our daughter has been on amandatine and complains of dizziness. But it has helped with the shuffling and quick steps she was experiencing. She takes a lot of sinemet also and doc is trying to get xadago approved to extend her on times....

It’s a vicious circle trying to figure out what works and what doesn’t and each persons body responds different. Good luck with finding a regimen that works.

park_bear profile image
park_bear in reply to Williemom

If she is complaining of dizziness you really need to check her, or have her checked for orthostatic hypotension. It is simple to do – compare her blood pressure sitting versus standing up, or better yet, lying down purses standing up. This condition can be disabling. Not something one wants to invite.

You are so right I am dizzy when I stand and everything I read is very good information.

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