Have had PD for about 2 years. Have severe orthostatic hypotension, bladder issues, dystonia in left foot, and neuropathy in both feet. Both my Achilles heels have been weakened , probably due to cipro, and other antibiotics. In last few months, a very concerning issue has evolved. Every evening, usually after dinner, my bp goes to stroke levels.(180/120 or higher). I begin to have to have to urinate every 10-15 , and my body goes into shutdown mode. C/L isn't much help. Then 2 hours later, or less, my bp can be down to extremely scary lows. (60's /40's). Neurologists don't seem to have any solutions. Working with cardiologist trying to get to some reason why this is happening. Have lost my ability to exercise, and my mind is in another place. Feel like I'm in someone else's body. Concerned I've done much damage to my brain, and body. Does anyone else experience these issues?
What is this? Doctors no help!: Have had... - Cure Parkinson's
What is this? Doctors no help!
Pretty sure some PD patients experience autonomic nervous system problems, but have you been assessed for Multiple System Atrophy?
I'm not sure what's wrong with me - I have some dysautonomia symptoms and sleep problems, similar to my father who had MSA - which is not supposed to be hereditary. My dad also had really bad neuropathy, and later muscle wasting of his limbs and rhabdomyolysis. My dizziness on standing problem cleared up after I started taking MitoQ, a CoQ10 derivative. There are case studies in the literature of high doses of CoQ10 helping with orthostatic hypotension. I'm also taking a bunch of other stuff including benfotiamine, which is supposed to help with diabetic neuropathy, which seems to have more in common with type of neuropathy my dad experienced than I had initially thought.
I read a lot on neurodegenerative diseases and the current track I'm on is the role of the Na/K ATPase (aka the sodium pump). I've been playing with my Na/K intake by cutting salt and taking some potassium bicarb - going the opposite direction of what is normally suggested (which is to increase salt consumption). This can be dangerous and I am not suggesting you try it - just offering myself up as guinea pig / case study.
Hope you get some answers.
How much COQ 10 where you taking to stop the dizziness I take 100mg a day but still dizzy when I stand
I take 10 mg MitoQ/day. It is getting too expensive, unfortunately. It has been used in clinical trials at higher doses. The trials have not shown any safety concerns but there was a weird ex-vivo study on kidneys (they took the kidneys out & kept them alive somehow) that showed unfavorable changes to mitochondria. I'm a bit concerned over that, but OTOH CoQ10 interacts with light and kidneys are not supposed to be exposed to light so I'm wondering if the experiment has any relevance to real life. Also, some in the kidney study research group may be involved in the development of another mitochondrially targeted anti-oxidant, SS-31 (aka Bendavia, Elamipretide) that I think is en route to becoming an Rx drug. No doubt it will also be expensive - but I would like to try it if it becomes available.
I also do a lot of other stuff (exercise, take other supps including benfotiamine and PQQ) and I'm not sure how much the other stuff contributes, but I do know that the MitoQ in necessary from times when I have run out for a few days.
Here's a link to the abstract for the case studies article:
pubmed.ncbi.nlm.nih.gov/290...
"Seven patients with symptomatic orthostatic hypotension were treated in an unrandomized
manner with 257 ± 37 mg coenzyme Q10 daily for 10 ± 3 months."
So the amounts that the patients took varied and averaged around 250 mg.
Thanks
Welcome - hope it works for you.
Come to think of it - the OP might be able to get SS-31/Bendavia on a compassionate use basis if they can get their doctor and the drug company, Stealth Biotherapeutics, to agree:
stealthbt.com/expanded-access/
Another thing I forgot - I try to eat my greens. Seriously, I can't understate how important greens are. Vitamin K has structural similarity to CoQ10 and dietary chlorophyll actually helps regenerate CoQ10:
nutritionfacts.org/video/ho...
Now with the pandemic and me being really scared of it - I buy prewashed greens and dump them in a pot to cook. They say not to worry about contracting it from fresh produce, so perhaps this is overkill.
I don't know how I can get my daughter to eat greens, though... I think she really needs to eat them. Being a parent is hard.
Green smoothy camoflaged with frozen blueberry and banana and other tasty fruit. Start low greens and increase spinach or kale each time. or freeze this and call it sorbet!
Unfortunately she has oral allergy syndrome and pretty much all her fruit and veg has to be cooked to death to denature the allergens. I could try cooking, then freezing to make smoothies.
A while ago I froze some pureed acorn squash and it turned out kind of like sorbet after it had thawed for a bit - but she can't eat winter squash at all. It was pretty good and very healthy, so I might try it again for myself.
Gosh that sounds tricky. She sounds like she needs a good multi nutrient to compensate for the nutrients that have been destroyed in cooking. Try Hardys DEN.
Made this tonight and kids liked it,newworld.co.nz/recipes/vege...
Just speculating here – it seems you have the opposite of postprandial hypotension. As you absorb food and drink from dinner your blood volume increases in an unregulated manner. Then your kidneys try to rectify the matter and end up overdoing it. If this is the case then skipping dinner would make a difference.
Since you have severe OH, you are no doubt well aware that blood pressure will change radically depending on whether you are standing, sitting or lying down. Just checking – I take it the blood pressure measurements you have shared are in the sitting position? Also, are you taking a dopamine agonist?
I will share what I know about conventional OH and perhaps it will be a little help:
In the case of OH there is a long-acting blood pressure regulation system that will gradually raise your blood pressure during the course of the day when you are up and about and your average blood pressure is too low. Conversely it will reduce your blood pressure during the course of the night when you are lying down and blood pressure is too high. As result a person with OH tends to have dangerously high blood pressure upon lying down in evening. You should measure your blood pressure under this condition and if it is dangerously high consider sleeping in the reclining position rather than flat. Likewise your blood pressure is likely at a nadir first thing in the morning. This would be the time to implement blood pressure raising measures if you choose to do so.
Do you think it could be helpful to use a continuous glucose monitor to see if there is a correlation between bp changes and changes in blood glucose levels?
I do not know. I tried checking with Google scholar did not find anything relevant.
It seems like leptin could be involved but it seems like it should lead to the opposite - postprandial hypotension. It's puzzling.
Supine hypertension?
ANS dysfunction aka dysautonomia?
Fight or flight mode chronically?
Goldstein DS
Recent article about dopamine, insula, primary motor cortex.
The topics above can be explored using HU search function.
Spend a day watching Dr. Joe Dispenza on YouTube to see if his work can provide you with some relief or better.
Constance
Hi barnwill! I, too, have extreme OH and have my bp at times in the 50-60, which I can control! if I put my head between my knees (out in public) because I feel I am going to faint while standing still. I am much better sitting. For I had the DATscan which assessed I had Parkinsonism which lead to MSA (multiple system atrophy). One neurologist, another movement specialist (neurologist) diagnosing! I have been on Rytary for PD and they all agreed it is a process of elimination! So far the Rytary has been keeping my symptoms controllable! All agree on medicating the symptoms and when the meds stop working = problems. BUT
I must tell you I I was so down with severity of OH, PD symptoms, I tried a homeopathic doctor and I have become a believer of holistic meds! I haven’t stopped prescribed meds, but I see her once a month and she is “working on” my autoimmune/nervous system. I have been seeing holistic for 8 months, assessed PD/MSA 1 1/2 years! If I forget morning or evening dosage, I feel the difference!
I don’t know how long it may last, but I don’t want to go back to the undiagnosed days for as long as possible!
Thanks for CoQ10 info!
God Bless all of you! This disease is scary!!
I would suggest being evaluated for MSA, your symptoms seem to align more with MSA then PD
I wonder if it would help if you switched your evening meal to a low carb high good fat meal - avocado, nuts, seeds, animal fats.. with lots of veg. i think it might.
I think altering macronutrient ratios or tracking food intakes (using something like the cronometer app) and seeing if it correlates to symptoms could be informative, but I would proceed cautiously given the severity of the OP's symptoms.
I would also be not so quick to assume 'good fats' will be helpful. I am a carrier for Medium Chain Acyl-CoA Dehydrogenase deficiency (MCAD) and partially symptomatic - I can't metabolize MCT oil efficiently. I believe based on family history that my father (had MSA which included a bout of otherwise unexplained rhabdomyolysis) was a carrier; he did not have symptoms of hypoglycemia that I know of, but he has a sister who does. My daughter is a carrier and had an episode of neuroleptic malignant syndrome as a reaction to Reglan; NMS is caused by a drop in dopamine levels. It can run in families and is more common in people with Lewy Body Dementia - and it can result in rhabdomyolysis (didn't in her case, thank goodness). I believe the problems metabolizing MCT can cause CoQ10 insufficiency and contributes overall to the pathologies experienced by me and my family.
Are you using a arm cuff for blood pressure? I've found wrist cuffs to be very inaccurate (both too high and too low at times). It seems unlikely that you would have a 60/40 blood pressure and still be conscious, or at least dizzy.
I know the neurologist told me years ago not to take Cipro with PD meds. You may want to read this article if you're taking Azilect.
I had what sounds like really similar symptoms. My cardiologist put me on Flecanide, only after trial and error through several different drugs. This one did work for me. Prior, I was fainting, falling on the ground in a heap and then my BP off the charts? Luckily, my doctor and I found a solution. I feel like a new person. Hopefully you will also find relief!
Interesting mechanism of action for flecainide:
researchgate.net/figure/nhi...
The more I read the more interesting this gets. Thank you so much for posting.
Flecainide acts on the Nav1.5 sodium channel, found in cardiac muscle; the Nav1.7 and Nav1.8 sodium channels are found in pain sensing neurons and are implicated in neuropathic pain:
So interesting! Thanks for the links and the one below! This is obviously anecdotal, but I feel better! I am so relieved not to be falling on the ground, dragging myself out of bed, into bed, and also pleased my BP is controlled.
So impressed by the support on this site. Want to thank you all for your comments,suggestions, and concerns. Such a caring community. Lot to digest, and consider. Thank you.
One more thing - Vitamin B12 deficiency can cause orthostatic hypotension:
ncbi.nlm.nih.gov/pmc/articl...
And neuropathy:
ncbi.nlm.nih.gov/pmc/articl...
The possibility of Vitamin B12 deficiency is often overlooked by physicians
Be careful about what medication you are on that they don't interact with each other. Because last year(, this doesn't have anything to do with my dystonia.) I felt that I'll that some nights I thought I was going to die I end up with paramedics coming, I was down outpatients even went back to the heartlands where I had a band fitted they thought it could have moved, tests for bowel cancer MRI scans you name it I had tests I was curled up in a ball on the bed couldn't stand voices or phones going one night I felt my body was leaving the chair. Then one day my daughter took me to doctors appointment she said you might need your new antidepressants to go up . When I got home I got the box out and the instructions inside was crumpled up when I put it straight it was on allergy, it turned out the tablets pramipexole for restless legs was interacting with citalopram and I had serotonin syndrome and from that night not taking them I was back to normal.
Ugh! I am sorry. Went through exact same thing with my husband. Complicated to find the right combo. Here’s what he landed on:
For bladder. D mannose. Over the counter 500 mg daily
For orthostatic:
During active times during the day like Pt. Salt tabs right before. Lots of water
Other times on your feet. Northera which is for Parkinson’s orthostatic hypo. Need to take blood pressure throughout the day if too high don’t take it. They usually try mididrone first. Then when bedtime and laying down almodipine to lower it Had to play around a lot. Find a specialist that treats autonomic dysfunction. The doc said with Parkinson’s those high numbers are nit so bad like they would be for non Parkinson’s people. They had him do a 24 hour bp while playing around to see what worked.
Not sure if nyc is convenient. NYU Langone had a whole dept fir this. Best in the world
It’s tough. You don’t want high and don’t want low-you could blackout and fall
Also see what other meds you are in. Many antidepressants and things like flomax cause orthostatic hypotension
Sadly that’s my short answer. Keep trying! Don’t give up. It might take daily monitoring. Exercise helps too. Stationary bike. Good luck!!!!
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