Nine years since PD diagnosis (13 since first obvious symptoms).
Last month I was fighting my way through sepsis shock in the hospital. Concensus seems to be meningitis, but two different hospitals were unable to successfully get a spinal tap. I felt grateful that I didn't seem too much worse for the wear as I continued to recover.
Two weeks or so since release from hospital I'm experiencing debilitating blood pressure fluctuations.
The best remedy I've been offered from my assorted doctors is salt your food. Wear long compression hose.
Any insights or suggestions for effective methods to try would be welcome. I'm fresh out of my usual optimization and feeling quite alone in coping with this.
Written by
AlpacaGal
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I take it you have been properly diagnosed with orthostatic hypotension ("OH") and suffer a loss of blood pressure upon standing. This results from impairment of the postural blood pressure regulation system, in this case caused by damage to your autonomic nervous system from the meningitis. This system normally automatically adjusts your cardiovascular parameters to maintain constant blood pressure whether sitting, standing or lying down. Orthostatic hypotension can also be caused by dopamine agonists.
There are ways to mitigate this problem and thereby improve your condition. It is important to understand that in addition to the fast acting postural blood pressure regulation system there is also a slow acting blood pressure regulation system. This system will slowly raise your blood pressure during the course of the day when you are up and about, because your average blood pressure will be too low. Likewise it will slowly reduce your blood pressure during the course of the night resulting in lower blood pressure upon arising.
To work on treating this problem it is essential to have a blood pressure cuff and check for worst-case high blood pressure. You should measure your lying down blood pressure upon retiring for the evening - it may be too high at this time. If necessary you can sleep reclining instead of lying flat to reduce blood pressure at your head and reduce risk of stroke.You should avoid taking measures to raise your blood pressure in the evening, especially if your evening supine blood pressure is dangerously high. You should also measure your blood pressure first thing in the morning and confirm it is low. For this measure you want to be sitting up, or standing up if you can do so safely.
To treat this condition you want to raise your blood pressure first thing the morning when you are done sleeping. Prepare one liter or one quart of isotonic saline. That consists of 9 grams per liter or 8 grams per quart of water. Drink this first thing in the morning when you are done lying down. Do not drink it in evening or afternoon because it can result in high blood pressure when you retire for the evening. Plain water does not work because the kidneys will excrete it rapidly.
Once this water has been absorbed you can measure your blood pressure again and observe the impact of the treatment. As you get a handle on how your body is responding you can make adjustments as necessary. I did suffer from orthostatic hypertension and did recover. So that is possible although there are no guarantees.
I do possess a BP unit and have been monitoring mornings. I'll add the evening readings and formulate a plan to hopefully manage this issue. With any luck maybe leave this problem in my past, although I'd be happy to control it better.
Thank you again for your compassion and suggestions!
Follow the doctors instructions also. It sounds like they did not explain why. Do not wear the pressure tubes or socks to bed at night but put skin cream on your feet and legs and then the compression tubes a soon as you wake. Everybody is trying to avoid salt and a few people actually should avoid it but the Roman soldiers were partly paid in salt for a reason.
I listened to a webinar recently about the values of Celtic salt. It helps keep water in the cells. Also, if your Dr is recommending compression then you may want to ask about a manual lymph drainage massage or dry brushing.
Hi AlpacaaGal, i hope you don’t mind me reaching out to you from the uk. I have interrogated the whole of Healthunlocked,so a huge range of ailments and diseases, for ‘postural ( or orthostatic) hypotension’ and you were one of he very few across the world to match, and the most recent ( were the odd ones from up to 9 years ago!)! I do not have Parkinson’s but hypothyroidism, type 3c diabetes ( following septic shock and acute pancreatitis), fibromyalgia and in the last 4 years Long Covid. It’s the LC that really mucked up my autonomic system giving me high BP at rest, and very low BP after about 8 mins standing up., when if I haven’t sat down, I collapse or get very breathless. A tilt table test , in Jan. ‘24, showed 60/40 BP, and my HR rises to over 130 to ‘compensate’. I had been put on 5 BP drugs, until this Jan. when the Falls consultant removed one drug bisoprolol,but that’s it…bother dept.and Gp has subsequently ignored me, keeping me on drugs American articles indicate are a no-no, and I have been left to DIY treatment. I swim 5x a week, wear compression socks ( in winter, getting abit unpleasant now I’m in sandals) but unsure of what I should be doing as I have both hypo and hyper tension eg drinking lots of salty water first thing seems to contradict the hypertension. I can’t work out what has caused and drives my hypotension, other than standing up… Parkinson’s is often listed in likely factors, but Long Covid has not yet, I suspect the sepsis and LC have many similarities. I hope you have found some relief from postural hypotension in the last month or so, have you found anything to help you ,or tips to help cope?
Our common ailments seem to be hypothyroidism and sepsis shock. I had experienced a little hypotension over the past year, but the sepsis seemed to kick it into a more troubling issue. Like you, I was told more salt and compression hose. Nothing has been prescribed, but it seems to be gradually improving.
Other than a few vitamins, my only prescribed drugs are for Parkinsons and thyroid.
I'm sorry for what you are experiencing - it seems you are very pro-active in trying to resolve the issue. I wish I had the answer!
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