Are there supplements or non medication techniques to raise BP?

[IreneF]

I've lost some weight lately (altho I'm still overweight) and my BP has almost gone back to its old normal of 90/60. It was 92/63 at my appt. w/ my new primary care doc (not my cfs specialist). He was fussing at me about it even tho it's not a problem for me. Sometimes things go gray and I see stars, but I just put my head down. He wants me to cut back on a drug I'm taking for hair loss that acts as a diuretic. But why? What's wrong with low BP if it's been low nearly all my life?

I used to take Florinef and drink salt water during the day. I would pee buckets every night. Now I consume smoothies and salty soups and don't worry so much about water. I mix a glob of miso and a glob of PB and add hot water--instant soup. I put a lot of salt on my food. I'm not sure how much it helps, since I think the mechanisms behind OI and POTS are only partly affected by what you eat or drink and have more to do with homeostasis gone awry.

BTW, you can buy salt tablets at any drugstore, but they are expensive when you realize they are just salt.

I just found out that lots of people have holes between the right and left sides of their hearts, but they are never found because most of the time they don't cause problems. Is this something to explore, Ginger, or have your cardiologists already considered the possibility?

 

[cturcot]

@cturcot I am very sensitive to meds too and definitely would not tolerate Licorice root if it gives me tachycardia or heart palpitations. I assume that you stopped drinking the tea and never tried it again? Did you ever find anything else that raised your BP?

Does anyone know the standard dosage of Licorice Root? I would start with a much lower dose than recommended if I did try it.

Yes, I stopped drinking the tea and since then avoid any combo supplements that contain licorice. I have not been able to find anything to raise my BP. Its lowest in the morning and usually increases as the day goes on and I drink more fluids. So far I just live with it and for the most part it doesn't cause me too much trouble. I'm pretty sure I have POTS as well so maybe that's why the licorice gave me palpitations?? Good luck, hope you find something that helps!

 

[taniaaust1]

Can you add something to make it taste good? For instance, some find fizzy drinks easier to get down. You could get soda water, add something like a fruit extract (I use concenrated tart cherry from a health food store), and something like electromix, which is a powder that comes in a packet. The time you need electrolyte fluids the most is before you get out of bed. Drinking then might prevent some of the BP fluctuations you experience.

Sushi

Im completely with what Sushi is saying to you.. taking fluids before you even get out of bed is important for those of us with these kinds of issues. 1-2 cups before you even get up.

3 litres is 12 cups of fluid daily. Those who have dysautonomia issues, its usually recommend 8-12 cups of fluid per day.

 

[beaker]

@beaker What are the water flavor enhancers? I am not familiar with them unless you mean something like Vitalyte? Salt Sticks are a pill/capsule that athletes use but I use them just to maintain salt and electrolytes. You can order them on-line. The blue bottle is without caffeine which is what I get.

HERE is a link from Amazon page of different water flavor enhancers. Some are just flavor and some add vits or in them.

I took just straight salt tabs from the pharmacy. They are horse pill size chunks of salt.

 

[ahimsa]

@Gingergrrl, maybe some soup broth (as a bonus the canned versions are usually quite salty) would be one way to get fluids? There are so many different options out there from boullion cubes to canned to boxed versions.

Another thought, since you hate the taste of Pedialyte, is to mix up your own homemade version of electrolytes. At the most basic you could just add regular table salt and some "salt substitute" for potassium into water. I also put in some dextrose to help with absorption (I think it makes a difference for me, esp. on nights when I don't eat dinner). But I think some folks on the forums use a mixture that's just 3 things - water, sodium chloride, and potassium chloride. And then you could add maybe lemon or lime juice or one of those water flavor things.

To get an idea of how much salt, etc., to add to the water you can search for recipes for "homemade pedialyte" or "WHO Oral Rehydration Solution." But I'm not sure how important it is to stick to these amounts. You should probably ask your doctor whether it matters. I checked with my cardiologist once just to make sure I wasn't getting too much potassium and he said it was fine.

By the way, I use non-iodized for this mix since it's so much salt. I figure that I'm getting plenty of iodine by using regular iodized salt for cooking and at the table.

 

[Gingergrrl]

There are quite a few threads on it. As I remember, most did not do well with it but of course some did! I tried it and it made me feel terrible.

@Sushi What happened when you tried Provigil? I have not had a chance to look for the threads yet.

One of the first drugs used to raise blood pressure in dysautonomia patients was sudafed (the kind behind the counter that has pseudoephedrine in it. It works for many. Have you ever taken Sudafed for other reasons--so you know if it bothers you?

I cannot take Sudafed or anything with ephedrine in it.

P.S. Some find drinking through a straw easier.

I actually do find it easier to drink with a straw so I don't have to lift a cup or bottle which is heavy for me (I have no arm strength and get short of breath doing nothing let alone lifting something!)

BTW, you can buy salt tablets at any drugstore, but they are expensive when you realize they are just salt.

The ones I buy have Sodium, chloride, potassium, magnesium, etc, in them and are a good electrolyte tablet although salt is the main ingredient. They really are not expensive compared to other supplements.

I just found out that lots of people have holes between the right and left sides of their hearts, but they are never found because most of the time they don't cause problems. Is this something to explore, Ginger, or have your cardiologists already considered the possibility?

I had several echocardiograms (and a CTA scan while in the hospital) and assume they would have told me if I had a hole in my heart !

3 litres is 12 cups of fluid daily. Those who have dysautonomia issues, its usually recommend 8-12 cups of fluid per day.

@taniaaust1 Thank you and I can never remember how liters translates to cups.

HERE is a link from Amazon page of different water flavor enhancers. Some are just flavor and some add vits or in them.

@beaker Thank you and I looked at the link and had not seen those before. I am trying to figure out if different flavors would make it easier for me to drink but I actually really like the two flavors of Vitalyte that I have (citrus and fruit punch.) I just struggle so much with breathing that it is hard to eat and drink. Today I have had 4-5 cups and it's 10 pm and honestly don't think I can drink much more but am trying. I agree with everyone who is telling me to drink more, it is just really hard for me to execute.

 

[ahimsa]

I cannot take Sudafed or anything with ephedrine in it.

Same here! It really screws me up.

By the way, for rough calculations a liter is pretty close to a quart. A quart (4 cups) is 32 ounces. A liter is about 33.8 ounces.

 

[taniaaust1]

Gingergirrl.. how much salt are you having in your things in a day?

I tried salt pills but found I couldnt take enough of those to get the amount of salt which was being recommended for POTS. (salt pills were sticking in my throat and very hard for me to take to). Im wondering if maybe you also are not taking the recommended amount for issues like this (dont thou ask me what the recommended amount is for people like us is as I cant currently remember).

I know you are taking some but is it enough?

 

[IreneF]

This is an excerpt from a blog post written by a woman who had a stroke at the age of 33:

"The clot reached my thalamus through a hole in my heart. The hole, or more accurately a flap, is called a patent foramen ovale, or PFO. All fetuses have a hole in their heart between the left and right chambers, to bypass the lungs as they take oxygen from their mother’s blood. Once born, that flap fuses. And once born, nearly a quarter of humans have holes in their hearts that don’t completely close. For some, the hole is severe and needs to be closed immediately. For many others, the hole is undetected. Maybe like I used to, you get migraine headaches, or have altitude sickness at 5,000 feet instead of 10,000 feet, or find yourself panting while doing a slow jog, no matter how often you train.

"They discovered the hole, the cause of the stroke, with an echocardiogram and a bubble test. A doctor injected a bubbly sterile saline solution into my vein and watched the bubbles travel through my heart on a monitor. If there were no hole between the left and right atrium, the bubbles would be filtered out in the lungs (right atrium, lungs, left atrium). When bubbles appeared on the left side of my heart, we knew I had a PFO. My blood had not been fully oxygenated ever."

 

[Gingergrrl]

@IreneF is this story supposed to make me feel better or relate to having low BP? I spent five days on an inpatient cardiac unit in Sept and my cardio and ME/CFS specialist do not think I have a hole in my heart.

I had none of these autonomic problems prior to having mono and EBV and do not get migraine headaches and had no issues with altitude or breathing prior to mono and ME/CFS. I have had a terrible day and to be honest this story was not helpful assuming you addressed it to me?

 

[mermaid]

@Gingergrrl I know you have been put off re the liquorice option by what has been written here by others. I take it safely with the help of a herbalist and have had no bad side effects.

If you did change your mind to pursue it properly then I see that in the US you do have this professional body of medical herbalists as we do in the UK and can find someone who could be trustworthy to prescribe and check you were not having bad side effects...
http://www.americanherbalistsguild.com/fundamentals
http://www.americanherbalistsguild.com/member-profiles

 

[Valentijn]

@Gingergrrl - 100mg of Yohimbe (2mg yohimbine) helps with my orthostatic low pulse pressure. It's a supplement, and cheap and easy to get in the US. If worried about reacting badly, it might help to check norepinephrine levels first to make sure that it's low, or at least not high.

 

[Sushi]

What happened when you tried Provigil? I have not had a chance to look for the threads yet.

It was a long time ago and I've tried so many things! I don't remember much except feeling: "Well, that was a disaster, never again!" If you don't do well with stimulants there is a pretty good chance you wouldn't do well with this type of drug.

On the other hand, I guess you can't drink coffee? It is a stimulant that is also a vasoconstictor and raises BP for most. For some it is a marvelous drug (in reasonable amounts). For others it is awful. I do very well with one cup in the morning.

I had several echocardiograms (and a CTA scan while in the hospital) and assume they would have told me if I had a hole in my heart !

I have a PFO (the hole Irene is mentioning). They are very difficult to see on echos. Mine was only seen because I had an echo with the cardiologist who "wrote the book on echocardiology"--literally! All my other echos missed it. Dr. Cheney used to write a lot about them as they are fairly common in this patient population. The bottom line: leave them alone, they rarely cause problems. Not something to worry about or even bring up with your cardiologist. (My take anyway) They aren't really "a defect in the heart" (as I understand it) but this "hole" which is natural, usually closes at birth, but sometimes pressure differentials between the chambers can cause it to open a bit again.

Patients generally had very bad experiences when surgery was done to close the hole. My cardio said, "Ignore it, it isn't a problem." When the underlying dysautonomia is corrected the PFO should close.

Thank you and I can never remember how liters translates to cups.

A liter is a little more than a quart so basically 4 cups + a bit.

Sushi

 

[SOC]

It is almost 1 pm here and I haven't eaten or drank anything yet (except water to take meds) and I just don't know how to force myself to do it when I feel this bad. It's like I am just trying to get enough air and can't swallow anything else! By evening when I have drank 6-8 cups I do feel better so logically I need to do this but can't figure out a way.

Well there's your problem. We all get dehydrated overnight because we're not drinking, then you go to 1pm without drinking. You're probably severely dehydrated. If you know you have low blood volume, that's really bad. It's no wonder you are having problems.

I know it's hard to drink enough water, but it's critically important -- as important as taking your meds. We hate doing it, too, and found it very difficult at first but we decided to treat it like medicine. We don't like it, but we have to do it for our health, so we force ourselves to. BTW, Florinef doesn't do a lot of good if you don't drink enough fluid, so if it didn't work for you, that might be why.

Fluid loading at the right time of day is important, too. We drink 500-750 ml (2-3 cups or 16-24 oz) before bed and again before getting out of bed. If you have low blood volume, you probably get quite dehydrated overnight, so fluid -loading before and after bed is a big help.

It's hard, but we do it because it's critical to feeling better and being functional. We have alarms set in our phones to chug another 500 ml (2 cups) several times during the day -- at least 3 liters (12 cups) total daily. It was difficult at first, but we got used to it eventually, just like we got used to taking an insane number of pills.

I've heard that it works best if the water is ice cold. I also find ice cold water easier to get down in larger amounts, so I've taken that path. I use ElectroMix in my water twice a day because I prefer the less-flavoring option, but if flavoring is what you need to get the water down, do it. Use a straw. Get someone to nag you. Get someone to hold the glass and pour it down your throat if you have to. Do whatever it takes to get enough water in you or you're not going to improve your dysautonomia symptoms (assuming you have low blood volume as opposed to other forms of dysautonomia). You can't get more (or enough, anyway) fluid pressure in your veins and arteries if there simply isn't enough fluid in them.

It's nuts what we have to do to keep our bodies working, isn't it?

 

[jeff_w]

@Gingergrrl - I agree with everything quoted below. Getting enough fluids is one of the most critical components of treatment. I wonder how much better you'd feel if you did fluid-loading on a regular basis.

Well there's your problem. We all get dehydrated overnight because we're not drinking, then you go to 1pm without drinking. You're probably severely dehydrated. If you know you have low blood volume, that's really bad. It's no wonder you are having problems.

I know it's hard to drink enough water, but it's critically important -- as important as taking your meds.

Fluid loading at the right time of day is important, too. We drink 500-750 ml (2-3 cups or 16-24 oz) before bed and again before getting out of bed. If you have low blood volume, you probably get quite dehydrated overnight, so fluid -loading before and after bed is a big help.

 

[IreneF]

Well there's your problem. We all get dehydrated overnight because we're not drinking, then you go to 1pm without drinking. You're probably severely dehydrated. If you know you have low blood volume, that's really bad. It's no wonder you are having problems.

I know it's hard to drink enough water, but it's critically important -- as important as taking your meds. We hate doing it, too, and found it very difficult at first but we decided to treat it like medicine. We don't like it, but we have to do it for our health, so we force ourselves to. BTW, Florinef doesn't do a lot of good if you don't drink enough fluid, so if it didn't work for you, that might be why.

Fluid loading at the right time of day is important, too. We drink 500-750 ml (2-3 cups or 16-24 oz) before bed and again before getting out of bed. If you have low blood volume, you probably get quite dehydrated overnight, so fluid -loading before and after bed is a big help.

It's hard, but we do it because it's critical to feeling better and being functional. We have alarms set in our phones to chug another 500 ml (2 cups) several times during the day -- at least 3 liters (12 cups) total daily. It was difficult at first, but we got used to it eventually, just like we got used to taking an insane number of pills.

I've heard that it works best if the water is ice cold. I also find ice cold water easier to get down in larger amounts, so I've taken that path. I use ElectroMix in my water twice a day because I prefer the less-flavoring option, but if flavoring is what you need to get the water down, do it. Use a straw. Get someone to nag you. Get someone to hold the glass and pour it down your throat if you have to. Do whatever it takes to get enough water in you or you're not going to improve your dysautonomia symptoms (assuming you have low blood volume as opposed to other forms of dysautonomia). You can't get more (or enough, anyway) fluid pressure in your veins and arteries if there simply isn't enough fluid in them.

It's nuts what we have to do to keep our bodies working, isn't it?

How do you prevent peeing it out? When I was drinking salt water I would pee it out in the evening. I think I would just have to get up every hour to pee if I drank that much water before bed.

 

[jeff_w]

How do you prevent peeing it out? When I was drinking salt water I would pee it out in the evening. I think I would just have to get up every hour to pee if I drank that much water before bed.

If you take Desmopressin, which is replacement for Anti-Diuretic Hormone, then you won't.

 

[IreneF]

If you take Desmopressin, which is replacement for Anti-Diuretic Hormone, then you won't.

Interesting idea, but according to wikipedia it doesn't raise bp, which is what we want.

 

[jeff_w]

Interesting idea, but according to wikipedia it doesn't raise bp, which is what we want.

Desmopressin does raise blood pressure. It does this by raising blood volume. Low blood volume is a direct cause of low blood pressure. Here's how Desmopressin works to raise blood pressure:

1. It raises blood volume, by preventing you from peeing out the fluids that you drink.

2. Raising blood volume then raises blood pressure, because you have more blood in your body to produce necessary pressure.

Remember that low blood volume is extremely common with this illness and is thought to be one of the root causes of OI. Also, low blood volume is a direct cause of low blood pressure.

This is why IV saline works to restore blood pressure: It raises blood volume--just like taking Desmopressin does. So, for people who can't take IV saline, drinking a lot of fluids and taking Desmopressin will raise blood volume. Which, then, raises blood pressure.

Taking Desmopressin in addition to fluid loading is how I became free from daily IV saline. I don't need saline anymore, because I'm regulating my blood volume and pressure by doing everything listed above. I drink more than 3 liters of fluid per day. One of those liters comes from an electrolyte drink. I space out the fluids so that taking them isn't a terrible chore. Then, before bed, I take 0.05mg of Desmopressin.

I learned through experience to go slowly on dosing with Desmopressin. It's one of those meds where taking too much can be dangerous. My doctor prescribed a standard dose for me, which was way too much for my system. I take 1/3 of the standard dose.

 

[ahimsa]

How do you prevent peeing it out? When I was drinking salt water I would pee it out in the evening. I think I would just have to get up every hour to pee if I drank that much water before bed.

Florinef (fludrocortisone) is another medication that can help the body retain sodium and fluids. But like @SOC said it won't work without extra salt and water. And it also can deplete potassium so that may need to be added, too.

It is true that we can't hold onto fluids indefinitely. Something in the body seems to messed up and wants to keep that fluid balance and/or blood volume low. So this fluid loading needs to be constant and consistent. Very annoying but at least it's a treatment option that can be helpful.

What is interesting is that when I first got sick one of my (many) early symptoms was waking up a couple of times almost every night to urinate. At the time I was not drinking extra fluids either during the day or before going to sleep. And when I did have to go during the night it was not a huge amount. So I wondered why I was waking up with this problem. I remember reporting it to the doctor in hopes it would be a clue for diagnosis since this was something that had never happened before.

Then in 1995 I started to treat my OI with florinef, water and salt. In spite of drinking 3+ liters of fluid (water and/or electrolyte mix, plus maybe 1-2 cups of coffee), way more than I drank before, I NEVER get up during the night to go. Ever.

I do notice that since I added midodrine (in 2003) to my list of drugs I sometimes feel an increase in the urgency (that feeling of I better go right NOW). But there has been absolutely no increase in the frequency over these last 10-15 years in spite of the amount of fluids I take in.