Any info or experience with light headedness and circulation issues with PD?

[whitdemo]

My husband has PD, 9 years in, He had DBS surgery a year ago and that has been a miraculous positive change, however he has this symptom of getting really lightheaded when going from sitting to standing or any quick movements, ( he passed out a while ago and hit his head) or happens like playing pickleball and going from start to stop movements. Our neurologist said it can be PD related because it can impact circulatory system or it could be the meds, he was on Amantadeen for years and just got off of that.

Anyone else have these types of symptoms or have any suggestions that may help. He is taking electrolytes now which do help a bit.

[park_bear]

The medical name for this is orthostatic hypotension. You can read about it here:

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

According to this study amantadine carries a very high risk of orthostatic hypotension:

pubmed.ncbi.nlm.nih.gov/223...

Did this problem start while he was still on amantadine, and how long since he quit?

It can also be caused by dopamine agonists or by Parkinson's itself. It is a dangerous condition for exactly the reason you state - fainting upon standing resulting in uncontrolled fall. There's home treatment that can mitigate, but not cure, this condition. It starts with having a blood pressure cuff to measure the results of your interventions.

[whitdemo in reply to park_bear]

Thank you so much. He was on Amantadine for 8 years and has been off only 3 weeks. We had not idea that it could cause this potentially. He has been having issues for a few years but worsening in the last year. He's 62. We do have a cuff at home. He also takes Sinemet and Carba dopa leva dopa

[park_bear in reply to whitdemo]

I had not been aware that amantadine could cause this either. To mitigate this problem:

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 his blood pressure during the course of the day when he is up and about, because his average blood pressure will be too low. Likewise it will slowly reduce his blood pressure during the course of the night resulting in lower blood pressure upon arising.

It is essential to first check for worst-case high blood pressure. You should measure his lying down blood pressure upon retiring for the evening - it may be too high at this time. If necessary he can sleep reclining instead of lying flat to reduce blood pressure at his head and reduce risk of stroke. He should avoid taking measures to raise his blood pressure in the evening, especially if his evening supine blood pressure is dangerously high. You should also measure his blood pressure first thing in the morning and confirm it is low. For this measure he should be sitting up, or standing up if he can do so safely.

To treat this condition you want to raise his blood pressure first thing the morning when he is 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. He should drink this first thing in the morning when he is done lying down. He should not drink it in evening or afternoon because it can result in high blood pressure when he retires for the evening. Plain water does not work because the kidneys will excrete it rapidly.

Once this water has been absorbed you can measure his blood pressure again and observe the impact of the treatment. As you or he gets a handle on how his body is responding you can make adjustments as necessary.

I did suffer from medication-induced orthostatic hypertension and did recover. So that is possible although there are no guarantees.

[whitdemo in reply to park_bear]

This is so helpful ,thank you.

[Hidden in reply to whitdemo]

My PWP had a lot of problems with this when he was on Sifrol/Simipex - he had 3 bad falls and had a couple of stints in hospital with concussion and broken ribs until we got him off that drug. He has an issue still but that is related to thyroid - he has had to learn not to get up quickly or turn quickly. He is managing it much, much better now that he is only on Madopar and is more aware - he has had PD for 13yrs and is 73.

[pdbuzzboard]

NOH has become my wife's primary symptom that we manage (the gloves have essentially cleared the rest of the issues, although she still has some sleep disruption). She is on Droxidopa and Midodrine. The Droxidopa is a regular 3x per day dose while the midodrine is, mostly, to get her up in the morning with a very occasional dose during the day when she gets low.

The diagnosis on this is pretty easy. Take his blood pressure lying down. Have him stand up and take it again immediately. 10 point or more drop confirms the OH diagnosis (the N just means its Neuro related).

I have a pad of paper that I take a BP reading every morning and during the day if she has a spell (rare). Doctor's seem to respond better to a lot of data...

[stlewy]

I don't take Amantadeen, and I don't take my prescribed PD medication (C/L). I am a Pickleball player and had to stop temporarily as I would get some mild lightheadedness especially when quickly turning. I don't have an issue getting up/sitting down. I related the issue to some cognitive balance loss caused by PD. I had my wife give me a pushdown shoulder balance test, and I performed well meaning didn't think it was a physical issue. I then tested it with C/L (lowest dose), and the issue for the most part went away for a couple of hours. I want to get back to playing Pickleball, and hoping the vibration board I'm assembling (thanks PDbuzzboard for all the info) will help that along with exercising.

[whitdemo in reply to stlewy]

Thanks for sharing, can you tell me more about your vibration board. I have wanted to get one , but not sure of the best type to get.

[stlewy]

I think a good place to start:

github.com/pdbuzzboard/pdbu...