Severe postural hypotension : Hi I have had... - Cure Parkinson's

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Severe postural hypotension

20fatcats profile image
18 Replies

Hi

I have had PD since 2012. Now getting severe postural hypotension. ie Blood pressure drops 50 points upon standing up. I black out sometimes. Now on Midodrine 5mg 3 times a day and fludrocortisone 100micrograms but still a problem. Doctor has cut my sinement back from 2 x 7 times a day to 1.5 each dose and added 1 selegiline twice daily .Does anyone have this issue and has anyone tried something thats helped.Thanks

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20fatcats
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18 Replies
JJAJJ profile image
JJAJJ

Have you tried Pyridostigmine?

‘ pyridostigmine is effective in the treatment of neurogenic orthostatic hypotension. Both standing blood pressure and peripheral resistance were significantly increased, while the orthostatic fall in blood pressure was attenuated’

20fatcats profile image
20fatcats in reply to JJAJJ

I haven't tried that one . will look into it thank you.

laglag profile image
laglag

Do you drink plenty of fluids? Dehydration can cause low blood pressure/neurogenic orthostatic hypotension. 🥊

Astra7 profile image
Astra7

I was told to drink 400ml of water when this happened. It really helps.

park_bear profile image
park_bear

Postural hypotension, also referred to as orthostatic hypotension, is commonly accompanied by supine hypertension - dangerously high blood pressure upon lying down. This problem is at its worst in the evening. It is essential to have a blood pressure cuff and to check your blood pressure when lying down at bedtime. If your blood pressure is excessive under this condition you may need to sleep reclining instead of lying down.

Measures to increase blood pressure should be taken first thing in the morning. Drinking plain water is not sufficient because it will simply be excreted. What is necessary for this to work is isotonic saline - nine grams of salt per liter or eight grams of salt per quart of water. When absorbed this will not need to be excreted because it maintains proper electrolyte balance in your blood. When I suffered from orthostatic hypotension I would chug one quart of isotonic saline first thing.

Also consider high-dose thiamine if you have not already tried it. This is not a short-term fix but may help long-term:

highdosethiamine.org/

healthunlocked.com/cure-par...

park_bear profile image
park_bear in reply to park_bear

Also:

Small Study Finds CoQ10 Effective For Relieving Orthostatic Hypotension, Including OH due to Multiple System Atrophy

healthunlocked.com/cure-par...

20fatcats profile image
20fatcats in reply to park_bear

Thank you so much for that. I appreciate it. makes sense .I will do that.

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JJAJJ profile image
JJAJJ

ncbi.nlm.nih.gov/pmc/articl...

🙈 try this...fingers crossed...

park_bear profile image
park_bear in reply to JJAJJ

You can use the "more" pulldown menu to delete the comments with links that did not work

JJAJJ profile image
JJAJJ

stuffthatworks.health/ortho...

eschneid profile image
eschneid

20fc...Sorry to hear about your extra pd woes. As Michael J Fox always says, "It's the gift that keeps on taking!"

I'm a pd'er since 2007 and find that with my tremors increasing, toe dystonia, terrible balance, etc-orthostatic hypotension is my most debilitating symptom.

As said above, stay hydrated as best you can. I have to force myself to drink and it definitely costs me when I don't. It will also help with constipation (kill two turds with one stone)

Things mentioned earlier; I had success with B1 but bp became elevated so stopped it. Also, 8-9 grams of sodium sounds like an awful lot to me.

One simple thing that I do when out for a meal or at home when seated is to do some leg kicks/ lifts where I straighten my legs out, maybe a set of 10 for each leg and when you do stand-up do some knee/ t h i g h raises until you don't have that light-headed feeling.

Also, it seems just about every Parkinson's drug lists lightheadedness as a side effect, so have you added any new medications lately? Keep us posted.

Best,

Eric

kevowpd profile image
kevowpd in reply to eschneid

From a distance, you seem to be doing well for 15 years in the game, even though I'm sure it frequently doesn't feel like it 👍

eschneid profile image
eschneid in reply to kevowpd

Thanks Kevo,

Trying to get back on the basketball court since I t o r e my right labrum playing in November. Basically a sports hernia and I came back too quickly the first time and now after receiving a PRP injection and doing physical therapy I'm trying to do it right this time.

Anyone reading this should know that since I could not exercise as it was too tender, I definitely have gotten a fair amount worse tremor-wise due to inactivity and the social aspect of not being around people as much since I stopped playing 2-3 times per week.

If you want to keep the PD monster at bay, make exercise a daily routine for the rest of your life and don't hide at home- push yourself to go out and see people as well.

binnyrox profile image
binnyrox

I have a similar issue and take isotonic saline as per ParkBear’s note. I find mixing the salt with very cold water additionally boosts the pressure remarkably

The doctor gave me potassium to take with the fludrocortisone - as it decreases potassium in the blood

I was asked to wear compression socks but found the abdominal brace more effective

I was advised to sleep in a Reverse Trendelenburg position; where the knees and hips are not flexed; head higher than feet That helps moderate the otherwise high bp at bedtime

I’ve blacked out requiring stitches to the head - the doctor mentioned one can never fight a faint so if possible, lie down. ...

or sit down with your head lowered forward between your knees. .

House2 profile image
House2

This helps redmond.life/products/re-ly...

beehive23 profile image
beehive23

i have big troubles with that...compression stockings help and increase salt in your diet helps keep bp from bottoming out. hang tough.

Herford profile image
Herford

I am helping a good friend deal with this same problem. She has been to several doctors and just really told there is nothing that can be done. The salt tablets and the knee high and thigh high compression stockings. She too has blacked out and fallen twice, once with stitches to the head and the other with cracked ribs. Each doctor has asked her if she has Parkinson's but no one has ever told her she has Parkinson's. (I lost my dad to Parkinson's in October 2021 but he didn't have the low blood pressure drop upon standing). Is orthostatic hypotension a sign of Parkinson's? I took her to a specialist in this field and was told this is a common problem in older white women and for her to just watch for the signs and sit down.

She is on blood pressure medicine and she is supposed to drink lots of water and gatoraide.

She just mostly sits in her recliner now and is frustrated that she cant do much.

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