Low blood pressure hell

[poetessinmotion]

Hi everyone!

One of my most debilitating symptoms of ME is low blood pressure, but I was managing it quite well with pregnenolone (12mg) and 2 capsules per day of adrenal cortex extract. However, since the summer heat has begun, it seems to have gotten worse. It came together with a big crash I had 3 weeks ago, and I don't seem to be able to make my blood pressure raise. I'm trying electrolytes and ocean water (purified) but it helps only with a little less feeling of being zombified or wanting to sleep the whole day (which, well, it is something but I feel very dizzy or feel like faint most of the day) . My BP is still on 8/4 or 8/5 most of the day even if I take 4 salt tablets a day plus the salt in meals.

I wonder if this comes from the adrenals (I also have reactive hypoglycemia and my HPA axis is all messed up) . I also had very low body temperature on the days before and the first days of the last crash. I have Florinef but haven't tried it yet. I wanted to try to avoid it but looks like electrolytes are not enough and I can't live this way.

For those who have tried or taken Florinef for a while, do you still take electrolytes? I'm afraid of the potassium thing but I'll have a blood test in a month to see how it is going... Does really Florinef help with this? Any other remedies which are not licorice, coke or stimulants? I've tried everything salty and it raises it for an hour or so but maybe to 9/6 only to make it drop again.

Can I still take salt tablets with Florinef or it's better to avoid them?

Thanks in advance!

 

[Judee]

Mutaflor did the best for me on this. Licorice moved my BP from 86/58 up to about 94/59 (not much) but Mutaflor brought it up into normal ranges (110/70) and within about 30 minutes. Plus even if I missed a dose and it dropped again, sometimes it would come back up by itself.

(The first few doses I tried, I started sweating--which I hardly ever do--and got chills because of the sweating. I thought--mmmm, I'm going to check my BP and sure enough it was raised. For many years I've never been able to get it up so I know what you are struggling with.)

I'm off of everything right now because I'm going through medical testing but when I'm done with the testing, I'm going back on the Mutaflor.

It is pricey to buy initially but I've learned how to make the Mutaflor yogurt so that helps with the price. This is a good post for that plus he has other topics on Mutaflor on his website. Read the comments because I and others have put suggestions there if you do try to make the yogurt after buying the Mutaflor.

Of course, everyone is different so Mutaflor may not work for you like it did for me. Hope you find something.

Oh, and Florinef didn't help and I got the side effects of Migraine headaches, water weight and severe depression on it. I didn't really raise my BP at all. Hydrocortisone does a bit though.

Also you can make your own electrolyte that has potassium in it if you use Morton Lite Salt in the mix. Do you have that where you are? I have a recipe in this post that I use.

Edit: Don't drink black tea. It will lower it and make you feel lousy the next day. At least, that's what it does for me with my BP.

 

[poetessinmotion]

Thank you for all your suggestions, @Judee, but I'm afraid they won't work for me... I can't take sugar at all, or any kind of caffeine or stimulant, and I couldn't prepare Mutaflor with sugar

 

[kangaSue]

As strange as it might sound, look into renal Nutcracker Syndrome. Low blood pressure commonly occurs along with this, from the narrowed left renal vein causing increased venous pressures into your left kidney and left adrenal gland which then messes with a lot of hormones that are part of bp control and cardiac regulation too. Autonomic dysfunction also goes it, POTS in about 20% of cases but there are plenty like me that just have Autonomic Neuropathy with it. This latter can also affect your sweating and body temperature regulation so you might want to be checked for sudomotor dysfunction too.

 

[sunshine44]

As strange as it might sound, look into renal Nutcracker Syndrome. Low blood pressure commonly occurs along with this, from the narrowed left renal vein causing increased venous pressures into your left kidney and left adrenal gland which then messes with a lot of hormones that are part of bp control and cardiac regulation too. Autonomic dysfunction also goes it, POTS in about 20% of cases but there are plenty like me that just have Autonomic Neuropathy with it. This latter can also affect your sweating and body temperature regulation so you might want to be checked for sudomotor dysfunction too.

Interesting, what is the treatment for something like this? As I am always complaining about left kidney/adrenal pain etc. but due to being bedridden haven't been able to see a urologist, etc. for sometime.

 

[taniaaust1]

However, since the summer heat has begun, it seems to have gotten worse.

Dont forget that in summer as the temperature goes up, you will need to drink more.

For those who have tried or taken Florinef for a while, do you still take electrolytes? I'm afraid of the potassium thing but I'll have a blood test in a month to see how it is going... Does really Florinef help with this? Any other remedies which are not licorice, coke or stimulants? I've tried everything salty and it raises it for an hour or so but maybe to 9/6 only to make it drop again.

Can I still take salt tablets with Florinef or it's better to avoid them?

Thanks in advance!

Many of us find Florinef quite helpful. In my case it helps by about 15% which may sound not much but I really do notice that improvement as it means I can do an extra little thing in my day which I would not otherwise been able to do and last slightly longer in on my feet giving me more time to do something.

And yes people usually continue with what they are already doing while taking florinef as it's more so used as just part of the whole thing to help eg you need to make sure you are having plenty of fluids or electroylites, make sure you are getting enough salt, some need to wear medical compression stockings while taking it too.

With the florinef.. your potassium levels should be checked with dosage changes of it as it can lower that and also start off slow like those with ME/CFS should do with any new drug we try eg my specialist had me start off with only a quarter of a tablet for first few weeks, then I got my potassium checked and then we went to half a tablet etc.

 

[jstefl]

I suffered from low blood pressure for many years. I saw a cardiologist and had all of the tests. When she ran out of ideas, I visited two different electrophysiologists. I was put on Midodrine, but they had no idea why I was suffering from blood pressure that had dropped to 80/50 and my pulse slowed to 50. I wore compression stockings, but still was unable to stand up without almost passing out.

After several years of this I started on Valcyte. I monitored my pulse and BP daily during this time and was able to taper off the Midodrine. After 10 months on Valcyte I had stopped the Midodrine and my BP had increased to somewhere in the 115/65 range. That was 11 years ago, and my BP has remained in the normal range ever since.

I have no idea if this would help any one other than myself, but it sure would be nice if more cardiologists were of the work of Drs. Peckerman and Natelson.

 

[poetessinmotion]

Mutaflor did the best for me on this. Licorice moved my BP from 86/58 up to about 94/59 (not much) but Mutaflor brought it up into normal ranges (110/70) and within about 30 minutes. Plus even if I missed a dose and it dropped again, sometimes it would come back up by itself.

It's almost impossible to find Mutaflor here, but do you know if Symbioflor 2 would do the trick?

As strange as it might sound, look into renal Nutcracker Syndrome. Low blood pressure commonly occurs along with this, from the narrowed left renal vein causing increased venous pressures into your left kidney and left adrenal gland which then messes with a lot of hormones that are part of bp control and cardiac regulation too. Autonomic dysfunction also goes it, POTS in about 20% of cases but there are plenty like me that just have Autonomic Neuropathy with it. This latter can also affect your sweating and body temperature regulation so you might want to be checked for sudomotor dysfunction too.

I have to be checked for small fiber neuropathy, but the tests for sudomotor dysfunction came back fine. I'll ask my GP about renal Nutcracker Syndrome, but I got several urine tests done recently and nothing weird appeared, only some oxalate crystals.

Dont forget that in summer as the temperature goes up, you will need to drink more.



Many of us find Florinef quite helpful. In my case it helps by about 15% which may sound not much but I really do notice that improvement as it means I can do an extra little thing in my day which I would not otherwise been able to do and last slightly longer in on my feet giving me more time to do something.

And yes people usually continue with what they are already doing while taking florinef as it's more so used as just part of the whole thing to help eg you need to make sure you are having plenty of fluids or electroylites, make sure you are getting enough salt, some need to wear medical compression stockings while taking it too.

With the florinef.. your potassium levels should be checked with dosage changes of it as it can lower that and also start off slow like those with ME/CFS should do with any new drug we try eg my specialist had me start off with only a quarter of a tablet for first few weeks, then I got my potassium checked and then we went to half a tablet etc.

Thanks, I've started with a quarter pill today but haven't noticed nothing. Maybe it's a very low dose for me or it takes a few days to produce an effect? I also wonder if I'm suffering an adrenal crash and if I should also raise the adrenal glandular... I read that one shouldn't take much sodium with Florinef to avoid losing too much potassium, is that true?

After several years of this I started on Valcyte. I monitored my pulse and BP daily during this time and was able to taper off the Midodrine. After 10 months on Valcyte I had stopped the Midodrine and my BP had increased to somewhere in the 115/65 range. That was 11 years ago, and my BP has remained in the normal range ever since.

Now that is interesting. Do you think it was some nasty virus causing it? Two events happened together with my low BP: heat and stomach issued I developed after eating a chicken hamburger one day that had passed its expiration date, but it smelled ok... And a few days ago I even had to go to the ER with a very intense stomach ache, so I don't know if it's related. I started taking reishi two months ago and it can reduce blood pressure, but I guess I should have noticed it before, not after one month and a half on it and feeling honestly quite well. I crashed for overexertion with these stomach aches and now I'm with this crap of BP.

 

[jstefl]

I believe that it was a virus. I tested positive for several herpes viruses and enteroviruses at the time. In addition to the BP and pulse improvements I also had many other improvements, the most important to me was a great reduction in the intensity of my continuous headache. It went from incredibly painful to moderate. This was 11 years ago that I stopped Valcyte, and all of the improvements have lasted.

 

[Shoshana]

I still do wonder about the reishi, possibly …. I don't know whether you should try going without it, to see if the blood pressure changes.
But I do understand why you think that is not likely.

 

[Moof]

My blood pressure always drops silly low when it's hot. It's a known phenomenon, and you could well be suffering with it for no other reason than that it's summertime.

All I can do is take it easy, drink plenty of electrolytes, put up with wearing the compression socks, and add more salt to my food. I haven't tried medication because low blood pressure isn't usually treated in the UK; I wouldn't be able to get meds for it unless I couldn't even sit upright. It does get bad enough to cause that at times, but it's not constant.

I do feel for you down there in Spain, the temperature map over Europe has looked crazy lately!

 

[taniaaust1]

Thanks, I've started with a quarter pill today but haven't noticed nothing. Maybe it's a very low dose for me or it takes a few days to produce an effect?

it usually works quite fast if that dose is going to work for someone. I have not found it to be a drug which one needs to be taking for days like the ones which build up in the system. It looks like you probably will end up needing a higher dose than a quarter. At half a pill I was starting to think "oh maybe it's doing something but I'm not sure".. it wasn't till I was taking a full pill could I say there was an obvious improvement.

I read that one shouldn't take much sodium with Florinef to avoid losing too much potassium, is that true?

One definitely is supposed to take salt when using this as it works by helping hold onto the salt to help boost the blood volume and if you are not taking enough salt with that med may not help at all.

I've seen up to 7g per day salt recommended to take to those who are needing to boost blood volume, I don't know though if one would keep taking that much with it though. I just highly salt all my foods and try eating a lot of salty things. (I do better when I'm taking those rehydration mixes with it which have a lot of salt in them but I had to stop as they were ruining my teeth.. 3 months of drinking those = 2-3 holes in my teeth, it ate the outer layer of my tooth enamel away and I then developed pre-diabetes)

the potassium loss thing with it, I have not heard that that is related to how much salt a person takes, the potassium loss may happen indepentantly of that but I really don't know so can't say for sure.

And a few days ago I even had to go to the ER with a very intense stomach ache, so I don't know if it's related.

Be aware that salt pills, I've found can irritate the stomach so consider if they could be at all responsible for your stomach issues. I personally do not do well with salt pills.

Be aware that salt tablets I started taking reishi two months ago and it can reduce blood pressure, but I guess I should have noticed it before, not after one month and a half on it and feeling honestly quite well. I crashed for overexertion with these stomach aches and now I'm with this crap of BP.

I would not discount that something you have started taking a couple of months ago could be further lowering your BP. Some things can take time to affect something else. Also if you are taking things which can drop BP while trying to trial things to raise BP, it is possible that what you are taking could counteract on things you are trying.

 

[Float]

You can also raise the head of your bed by 30 degrees and you can find more information on line about that. I don't have a permanent bed or id do it.
Midodrine and Norethra are recommended in some other groups I'm in.
I have not tried florinef. I hope something works for you. It's always worse in summer.

 

[Shoshana]

I am no expert at this subject, though I myself do have long-term ongoing low bp , which dips lower at times.

I have not taken salt pills, and i know that they are needed and tolerated by some who do get important benefits from them,

but wouldn't they also contribute to dehydration of body tissues, drawing the moisture away, (perhaps from both tissues and bloodstream) and thereby, perhaps lowering bp?

I know that salt in general, for many or most people (those who have salt-sensitive high bp, for example)
raises bp,
but perhaps for some of us, the salt does its function to help regulate our bp changes, but doesn't perhaps simply raise it higher, in all cases and all times.

(which would be part of the explanation of why it doesn't "work" for some of us who take it to raise our bp)


My educated but limited guess, is that one needs to be very careful, to increase salt intake to raise bp, and help with OI,
yet, too much salt , (whatever that would be for each individual) might throw off the balance, and possibly lower bp instead. And IF that is so, for any person, then, the salt pills being so obviously 'concentrated' and higher dose than simply having salt in foods, might be harming , rather than improving low bp?

So it is maybe better for some of us, to stay with salty food snacks when needed, or added salt on foods, rather than the salt pills?

Just ideas, to consider. I admit i do not know for sure.

Note for some of the readers here:
Licorice tea can also raise bp, for some people who need an alternate to salt, to try. But one needs to have some caution with that effect, also,
and @poetessinmotion specifically said that is not an option for her now, either she cannot drink that, or it didnt help her.

 

[kangaSue]

Interesting, what is the treatment for something like this?

Stenting the left renal vein is the easiest procedure to have done, but not the safest option in the long run and everything else involves a major surgery to either shift around a vein, mesenteric artery or even the kidney itself.

As I am always complaining about left kidney/adrenal pain etc. but due to being bedridden haven't been able to see a urologist, etc. for sometime.

Left flank pain is a main symptom in about 80% of cases. There is often nothing wrong with actual kidney function and even the signs of having gross or microscopic blood in the urine is absent in about 20% of cases.

A Doppler Ultrasound of the left renal vein is often the test that picks Nutcracker Syndrome so you only need to see any doctor that can order this.

I'll ask my GP about renal Nutcracker Syndrome, but I got several urine tests done recently and nothing weird appeared, only some oxalate crystals.

Oxolate crystals can be part of Nutcracker Syndrome (NCS), more commonly the case when you have NCS and LPHS (Loin pain hematuria syndrome) together. Some of the few doctors expert in LPHS suspect that even crystals can be part of causing ureteral spasm with this and contributes to causing much of the left flank pain due to the ureter being highly innervated.

The "hematuria" part in the title of LPHS can be a bit of a misnomer too as hematuria is also absent in about 20% of cases of LPHS.

 

[PatJ]

Taking 1/2 teaspoon of cayenne (35K heat units) in water 3 times per day is allowing me to stay upright longer and lessening my low BP symptoms even when lying down.

It took awhile to work up to this dose. I started with 1/8 tsp and worked up slowly. Note that if you try this, your body needs to adjust if you aren't used to cayenne or hot foods. Initially my mouth produced a lot of mucous after taking the cayenne but that doesn't happen any longer. Also, at least initially, the cayenne is hot going in, and coming out during a BM.

It has all been worth the trouble for the extra time upright -- 15 mins to 1/2 hour extra each time I'm up, so the additive effect leads to a couple of extra hours upright each day.

 

[poetessinmotion]

Hi everyone,

After several days with half a pill of Florinef and two brands of electrolytes I can't seem to go upper than 8/5. This last month I've had severe stomach and gastrointestinal issues and my GP is ordering several stool tests in case there's some bacteria or pathogen, blood tests for electrolytes and tests for MCAS.

We've had a horrid heat wave recently and my doctor is advising me to leave the house only if necessary and avoid the sun by all means, specially until they run all the tests.

I still have the feeling I want to sleep most of the day, and it sucks. If I don't sleep well at night, the dizziness the day after is severe. I'm having a tough time this summer, all my symptoms x2.

 

[Shoshana]

I am very glad to hear from you, and to know how you are doing, @poetessinmotion

I am sorry for how badly sick you are,
and that this is such a very difficult time for you.
In addition to being ill, that extreme summer heat makes anything feel even worse.

I am happy that your GP is trying to help you, and to find a cause and help for you, with the very bad symptoms you have been having. I hope they find a way to help you to improve and feel better, soon.

It is so difficult on our emotions too, when we are so ill.
I am glad you told us about how you are.

Hang in there , and keep on trying to cope.

 

[Pearshaped]

Hi @poetessinmotion
Licorice root solved in warm milk did help me A LOT with very low BP.

 

[Shoshana]

I have thought of you and wondered how you are doing, @poetessinmotion