orthostatic hypotension

[sharron2]

My husband has been diagnosed with PD for 8 years. While fatigue and tremors have been most prominent symptoms, orthostatic hypotension has been rapidly becoming his most debilitating issue. He is taking Rytary 48/195 3 times a day. His doctors are reluctant to increase his Rytary as they fear it will further drop his already low blood pressure. His standing blood pressure is often 68/43 and 70/43.He does have heart disease and recently had a pacemaker inserted. He does well when it is around 70/60. Thankfully he only has a little short term memory issues that has been very stable. Any suggestions will be appreciated.

[johntPM]

As first aid, I keep myself hydrated and have with me some crisps (US = chips) for the salt.

[park_bear]

Orthostatic hypotension can be caused by Parkinson's itself or by dopamine agonists. Levodopa has also been blamed, but this recent study found no association between levodopa (which would include Rytary) and orthostatic hypotension: journals.viamedica.pl/neuro...

The first, higher, blood pressure number -the systolic - is the active phase of the heartbeat and what ought to count most for getting blood to the brain. 70 is awfully low. It is certainly understandable that this would be debilitating.

There are ways to mitigate this problem. The very first step is to measure his blood pressure lying down, at bedtime in the evening. The reason why you need to check this is that OH is frequently accompanied by supine hypertension ("SH") - high blood pressure upon reclining, particularly in the evening. You should only be taking measures to raise his blood pressure after you have confirmed his evening supine blood pressure is not dangerously high. If it is he may need to sleep reclining instead of flat. You must be careful not to aggravate the SH to dangerous levels.

It is important to understand why SH peaks in the evening: Orthostatic hypotension is the result of impairment of the postural blood pressure regulation system. There is also a long-acting blood pressure regulation system that slowly operates over a period of hours. During the day when the patient is not lying down the average blood pressure is too low. As result it slowly rises during the course of the day and peaks in evening. At night when the patient is laying down blood pressure is too high and slowly drops. It reaches its nadir upon waking in the morning.

So interventions to raise his blood pressure should only be undertaken in the morning, preferably early. The simplest intervention is to drink a quart or liter of isotonic saline. Since he has a heart condition you should to check this idea with his doctor. Plain water works poorly because it is quickly excreted to maintain a proper concentration of electrolytes in the blood. Isotonic saline is made by adding 8 grams of salt to 1 quart of water, or 9 g to 1 L. That raises the blood volume and therefore increases blood pressure. The prescription drug fludrocortisone also does this along with a number of undesirable side effects.

Compression garments around the legs or abdomen also help some people. They should be removed before retiring in the evening.

[rescuema]

In addition to above helpful suggestions, if he's eating lots of foods containing glucosinolates such as broccoli and cauliflower, it may contribute to hypotension. It took me a while to figure this out on my own through food tracking with correlating events. It may have to do with hydrogen sulfide production causing the BP to drop. Also, be cautious of high oxalate foods.

You could try some licorice or authentic ginseng products carefully (look out for low potassium) to increase or normalize the blood pressure. Zagarese licorice drops or licorice tea worked well for me, as well as ginseng. More on this healthunlocked.com/cure-par....

Hydrating and increasing salt should be the initial try. I noticed eating salty foods such as pickles or olives tend to help better rather than adding salt to the water where the kidneys seem to filter right out. You may also want to try supplementing ubiquinol in the am if not already.

[sharron2 in reply to rescuema]

Thanks for your comments, he can't use licorice as he is on coumadin for an artificial heart valve and it interacts. He only occasionally eats broccoli, he is more of a fruit, yogurt, egg, meat eater with a few veggies occasionally. He certainly could eat olives as he really enjoys them. I do have push him to drink enough as he doesn't feel thirsty.

[Resano in reply to sharron2]

An acupuncturist's view on this issue: "This is probably due to the pressure on the carotid sinus in the neck. The

rigid tissues of the neck press on the

carotid sinus, sending a false “high pressure” signal to the sinus. The body

correspondingly lowers the blood pressure. This symptom, orthostatic hypotension, is also commonly associated with adrenaline insufficiency as well

as shock (dissociation)." (Dr Hadlock)

[rescuema in reply to sharron2]

That's unfortunate - coumadin also rules out the use of ginseng. PD affects the sense of thirst - it is one of the common signs even before diagnosis, so keep pushing him to drink extra fluid along with salty foods. Also, interestingly some of the real/sea salts I used don't seem to do a good job of raising the BP, so try a plain old table iodized salt instead. One thing extra he could try - I'm not sure if he had tested his homocysteine level lately but do check it to be sure it's not too high and see if sublingual methyl B12 helps. A few times I noticed B12 seemed to help raise the BP and it's probably also a good idea for him to supplement B6 at least 2 hrs away from PD meds. I'm not sure if he's anemic at all, but looking into ruling that out is not a bad idea.

[Gigi216 in reply to rescuema]

Yes B12, thyroid hormone and extra salt will raise mine. Obviously not all at one time usually but when mine has been 90/50 I did do all 3 and it helped within 30 minutes

[rescuema in reply to Gigi216]

It's good to rule out B12 deficiency for sure, but after a while it may not work reliably as I have noticed. Another big issue to rule out is subclinical potassium deficiency that could contribute to hypotension. A lot of people are on high-dose B1, mannitol, etc., and don't realize they contribute to excess potassium loss and unable to replenish it through diet. You must be careful of potassium loss even with licorice or coffee, so it's a good idea to try supplementing potassium (while making sure you're not Mg deficient) while also improving zinc homeostasis which will help improve the K level. Another simple way is to incorporate Morton Lite Salt - which is full of potassium chloride.

[Gigi216 in reply to rescuema]

Thanks I was not aware that potassium could help! I do feel I’m low in magnesium because I avoid it somewhat because my symptoms of dysphagia first appeared after a month of taking epsom salt baths which contain magnesium sulphate. I have been trying to get my thiamine up though so I have been adding a small amount of magnesium to see how I do

[rescuema in reply to Gigi216]

Oh no, don't ingest Epsom salt regularly... I'm a fan of ES bath though. healthline.com/nutrition/ep...

I suggest you try Mg L-threonate near bedtime (helps with sleep), or other good absorbable forms such as glycinate, malate, etc. I often recommend Jarrow's Zinc Balance because most people tend to run deficient and don't realize how important Zinc is for health.

[Gigi216 in reply to rescuema]

Mine was as a bath, I thought perhaps it made an,unknown at the time, thiamine deficiency worse. I will definitely work on my zinc! I’ve been seeing many people mentioning needing it! Thank you!

[rescuema in reply to Gigi216]

Got it - it's definitely possible to overdo with detox bath (and sauna) - which translates to the loss of electrolytes and minerals. I did it to myself and realized I couldn't sweat anymore at one point until I corrected the deficiency.

[grannma]

Hi sharron. I ,too have OH and PD. 3 years of experimenting, I am now committed to Rytary (fir PD) 2x3per day and Northera 100mg 2x 3 per day for OH. Works great !!!

[grannma in reply to grannma]

i am on the same meds and same dosage as you! My concern is lightheaded quite a bit. I will try th salt ! How many glasses of water?

[beehive23]

increase salt intake to up his BP.

[PalmSprings]

I had OH, fainting frequently. I see a Cardiologist and am on Flecanide for the problem. This is not the first medication that I tried. He prescribed 5 others before we found this one that worked for me. I’d talk to your doctor perhaps about seeing a Cardiologist? And see what he/she says?

[PalmSprings]

By the way, I tried keeping hydrated and saline tablets before and nothing seemed to work.

[KERRINGTON in reply to PalmSprings]

In addition to some of the already mentioned items, I may drink half a cup of black coffee, or V-8 (vegetable juice) filled with sodium, potassium, & magnesium.

[sharron2]

Our cardiologist has mentioned using midodrine to boost his blood pressure, if necessary.

[Mogul1]

I have been taking Rytary for quite a while and first of all, it isn’t quite the wonder drug I was first introduced to. I was taking generic Carbidopa/Levadopa made by Milan. Apparently their factory in Puerto Rico was destroyed by the hurricane stopping production. That is when I switched to Rytary. I take it four times a day at 4 hour intervals and find it essential to take it right on time. If I’m 15 minutes late, I know I will experience some off time and have to wait for the

next dose to kick in.

I take 6-195’s/day plus 2-145’s in the afternoon/evening, so that is 2 195’s@7:00AM. 2 195’s@11:00AM. 1 195+1 145@3:00PM and 1 195+1 145@7:00PM. It is so important for me to be on time, so, of course, I do miss my intervals from time to time.

I also take 1mg of Azilect per day at 7:00 AM, and this has worked reliably for a number of years.

The thing that gets me about Rytary is “Stacking”). Initially, I referred to it as stockpiling.

When I began taking Rytary, I found that as the end of the workday approached I would get this rush that felt like I had taken more medication. I felt “Amped up” and rowdy.

When I told my neurologist about my theory of stockpiling, he said that what I described is known as “Stacking”.

Stacking occurs when I miss an interval and take my meds an hour or so late, then my next batch on time, but there are times when it happens and I have no idea why...everything was taken properly on time, but I can feel it coming on. It makes me think that the variable release capabilities are not that efficient.

Have you had any experience with stacking?

[sharron2 in reply to Mogul1]

My husband has never been good at taking his meds on time, so we don't know how he would be with a constant flow of medication. His hands do get very shaky when he misses his dosage, but he hasn't seen a correlation for his OH and his meds. I think he is under medicated, and think we will probably have to see if his neuro will trial him on a schedule closer together with the lower dose in between or push him up to the next higher dose. He has been on Rytary for about 3 years now. He had a brief stint in the hospital and used the dissolvable dopamine for a short while. I like how it worked, but he was switched back to Rytary. When do you eat with such frequent doses?

[Mogul1 in reply to sharron2]

I’m not a great example when looking at timing of meals, but I do look at what foods help me go a longer period of time without hunger. My favorite breakfast is. steel-cut Oats. I have been able to go all day without a meal, comfortably.