Hopefully good news for those of us with high BP!

[Guest veryblue]

Well, as you all know I am no doctor, but I take pride in myself for being very smart and able to understand complex issues very well. I decided to get off the POTS bandwagon this weekend ( cuz I doubt I even have this) and decide to just look into basic human phisiology. (sorry im smart but cant spell worth a lick) Anyway I found this in a textbook:

"Diastolic pressure is influenced by several factors. The diastolic pressure provides information on the degree of peripheral resistance: if there is increased arteriolar vasoconstriction, this will impede blood flowing out of the arterial system to the capillaries and diastolic pressure will rise."

Ha just as I thought: if POTS is caused by blood pooling then how come some of us have a rise in BP when standing. I'll tell you why...because we are perfectually normal. The body's normal response to orthostatic stress is a slight rise (5-10 mm/hg) in diastolic pressure with only a slight change in systolic pressure. Well if any of you are like me then you get a big rise in diastolic pressure but my systolic stays pretty much the same...maybe it rises a little sometimes. Then I read this article online...here is an excert:

"Orthostatic diastolic hypertension. The lower number of the BP often reflects the systemic resistance, and while standing many persons with OI and CFS will raise their lower BP number (diastolic) in an attempt to push blood up to the brain. Sometimes this is dramatic. One patient being followed with CFS had a low blood volume, about 60% of normal. While lying down, his BP was 140/80. After standing, his BP rose to 210/140 before we made him lie down. His pulse went up to 140 bpm. He felt rotten but refused to sit down by himself.

As an aside, everyone thought he was a fruitcake - a healthy looking man who said he felt poorly and couldn't work. He was denied disability as usual. Yet when we did the test, he was so determined to stand up I was afraid he was going to stroke out and croak. But he was standing with a BP of 210/140 and a pulse of 140 bpm. He is definitely not a wimp.

After the test, we gave him a liter of saline in the office because he didn't look too good and his blood pressure fell to 90/60 after an hour or so. It is important to note that we had measured his volume the day before so we knew he was hypovolemic. Normally you would never give saline to someone with high blood pressure, it just makes it go higher. In the future, orthostatic testing will require being done in an intensive care unit because these numbers are so scary. Now it is ignored, and patients with CFS called fruitcakes!"

Ha the answer is low and behold low blood volume! Those of us with high BP ovbisously cant have blood pooling now can we? We probably just have low blood volume due to a hormone that is out of whack. I can see a hormone going out of whack...not your whole nervous system going from fine one second to screwed forever in an instant. I rushed to my doc...told him my theroy and got a vasopression test done asap. I'll let you know how this turns out! Wish and wish and wish I'm right cuz this might be a cure out there for this select group!

[MightyMouse]

I was diagnosed with low blood volume, technically called "hypovolemia". My total calculated volume has tested below normal all 3 times I've been tested in the past 10 years. The test is done in the nuclear medicine department, in conjunction with multiple blood draws.

Here's an article on the topic of hypovolemia and CFIDS.

http://home.tampabay.rr.com/lymecfs/hypovolemia.htm

and, from the mechanisms section of the primary DINET site

"Hypovolemia (low blood volume) sometimes occurs in POTS patients. Reduced plasma renin activity often accompanies the low blood volume. Reduced levels of renin release consequently result in reduced secretion of aldosterone. This would be expected to impair renal sodium conservation thereby contributing to hypovolemia (Streeten, 1999). Findings suggest that the impaired renin release may possibly result from sympathetic denervation (Jacob & Biaggioni, 1999). Physicians believe hypovolemia and inappropriately low levels of plasma renin activity may be important pathophysiological components of orthostatic intolerance (Jacob, Robertson, Mosqueda-Garcia, Ertl, Robertson & Biaggioni, 1997)."

**I just want to caution folks that knowing one has low blood volume doesn't mean that a cure is available** Despite treatment for my low blood volume, I still have POTS symptoms.

Nina

Edited July 27, 2004 by MightyMouse

[Guest veryblue]

Thanks Nina...I was just inputing this information for us people who dont have other involvement....like EDS or whatever...just trying to figure out whats causing this. You do have EDS right?

[MightyMouse]

EDS III, and diagnosed with POTS/NMH (NMH is just another name for NCS), asthma, severe allergies, gluten intolerance and suspected celiac/sprue (yet another test for this was ordered by my gi doc last week), gastroparesis, yada yada yada.

[Michelle Sawicki]

Actually, those of us with pooling blood can have high blood pressure. I had high blood pressure when I first became ill, and I definitely have problems with pooling blood.

Like Nina, I caution readers as well. I know people who have taken DDAVP. It has helped lessen symptoms for some of them, but they haven't been "cured". If only it were that easy....

Michelle

[nantynannie]

Very Blue,

I wish it was that easy! I have a reduced blood volume of about 22% RBC mass, 12% plasma and 11% total volume. Many people with CFS (which I have) are hypovolemic. The cardiologist and my immunologist both said that this is not enough to cause the POTS symptoms. I also get high BP when I stand, but eventually (25 minutes during tilt) it drops. I can actually watch the blood pool in my hands. They turn a dark purple color within 30 seconds of being down at my side...

Ann

[MightyMouse]

Ann, you and are are alike in that my BP soars after standing, but eventually it takes a nose dive. Without meds, that's just a few minutes--with meds, I can stand for 15 minutes or so before the drop starts. I also eventually get a heart rate drop, but that takes much longer to happen.

Nina

[nantynannie]

Hi Nina!

I probably already asked you this...what kind of meds are you on? My doc did not treat the hypovolemia, he said it was not enough for the medicine and also, it can cause hypertension, which I guess some of us already have...

Thanks,

Ann

[MightyMouse]

I'm not currently on anything for the hypovolemia--however, I took florinef for many years (6 or 7, I think?). I had to stop taking it because it shot my base blood pressure too high--not sure what changed because for all those years prior, my bp went up and down, but never stayed high for long. Honestly, I've just stopped trying to figure it out. My body is going to do whatever it's going to do.

I'm on plenty of other meds though, mostly for gi, asthma and allergies (nexium, flonase, advair, zyrtec, benedryl, singulair and celexa).

Nina

[Guest veryblue]

Hummm...thats interesting...however I guess I am the wierdo of this group because I never have problems standing up...I feel fine...I go to school and work part time as a server in a restaurant for crying out loud! Since I have got sick, (Jan 04) I have never ever felt weird standing up. Thats my main reason for questioning POTS! Orthostatic intolerence...I have plenty of orthostatic tolerence!

[calypso]

Maybe I am confused, but if you don't have ANY problems standing up, why and how do you have POTS?

If you have a high heart rate all the time, you would be more likely to have inappropriate sinus tachycardia. Is high blood pressure when you stand the only symptom you have right now? Maybe that's your only problem.

No offense, but if you don't have POTS or don't think you have POTS, maybe you should find a different support site. Medhelp.org has a site for people with heart & BP problems. Maybe those people would help you better. Because you really don't seem to have POTS issues.

I am not trying to be rude; I am just trying to figure out how you can best be helped.

Amy

[Guest veryblue]

Thanks Calypso, Dont worry I dont find you rude at all...no appoligies needed. I dont know if I have POTS or not...thats whats frustrating. I feel like crap and it might just be something like a hormone imbalance that can be fixed, you know. I dont want to suffer if I dont have to. I do have a rather fast HR but it still goes up 30 BPM when standing sometimes. I do get dizzy at times, but it dosent seem to have any effect on my posture. Sometimes I happen to be standing, other times, sitting and they even can happen lying down. My doc keeps telling me POTS is postural...and I know that, but I dont really think its IST cuz of the 30 BPM thingy. I do find it odd however that I can still go for walks and play softball and stuff like that...you know...stay up late...the other day I went bowling for 4 hours, then came home at 1 am and partied with my friends. I just seems weird that if I really have orthostatic intolerence that I would be able to do so much. It seems like when everyone on here got hit with POTS they were bedridden for a while or at least very limited in their activities...I never have been like that...I never even considered POTS until I saw this website! No doctor of mine has ever mentioned it...they all make me walk a drunk line test and push and pull on me and say my nervous system is fine. The only doc who even was slightly conserned was a quack in my book! He told me that you cant just get POTS out of the blue. He said it was impossible to be playing basketball and taking 240mg of psuedophdrine just a couple of hours before my heart went haywire! The he proceded to tell me that I must have fainted a lot when I was little and didnt remember it! My answer was screw you...dont tell me what happened to me as a child! I am getting so sick of not recovering from whatever this crap is! People keep telling me that you can recover from POTS and be completly normal again...but if that bull is true then where are the people that have recovered! Where are they? I just want to hear from one person who was gone through this and is normal again! Just one and that would brighten my sprits and give me hope once again! I hate this! Here I am such a smart young lady, an athelete, a fiance, an aspiring lawyer...and now I am a freak! I feel so freking useless and I just want to be myself again...but am really doubting that it is even possible for me to completly recover. Am I just freaking out over here? Is it even possible for me to be completely normal again?

[Deb]

You sound like you need a little encouraging!

I may be recovered from POTS!!!!!

It's too early to tell positively, but my POTS symptoms are gone. My PCP thinks I may have gotten low blood volume from medications I was on that led to the POTS. All of those symptoms were exacerbated even further by the Zoloft. I am very sensitive to EVERYTHING, every stimulus, every medication, EVERYTHING!

I've been off of the Florinef for almost two months, and my BP has finally stablized. In fact it went form fluctuating drastically up and down to staying pretty level at around 120/75. A lot of the problems I have were caused from too much seratonin from the Zoloft. I was having myoclonic jerks that were effecting my walking and breathing and swallowing, and oh yeah, talking. I'll be off of the Zoloft this Sunday, and so far the jerks have lessened and lessened to where I rarely have them any more. The Neuros and the Psychiatrist the Neuros insisted I see thought I was having anxiety and panic attacks when actually I was reacting to first the Paxil and then Zoloft. I was having some anxiety, but if I was kept on the lower dosage of Paxil, I probably would have recovered much more quickly.

So, it is possible to recover from POTS if the cause is found and can be corrected. As in my case, if I don't let myself get dehydrated, I may never have trouble with POTS again.

[opus88]

Veryblue,

This support site is for those with dysautonomia, per the name. POTS is a very common problem for many people with dysautonomia, and this site seems to have evolved into primarily a POTS discussion. Some here have extreme cases of it, some quite mild. But having or not having POTS does not mean dysautonomic problems do not exist.

POTS is not one of my main problems, but dysautonomia is. In fact, I rarely have any tachycardia, and when I do, it's quite mild. But I do get a "head rush" and graying out many times upon standing, I do begin to feel faint if on my feet any length of time (especially if standing still), my heart will pound rather than race, I have trouble with dizziness, nausea, trembling and oversensitivity to adrenaline, horrible brain fog, and on and on and on.

Some experts believe MVPS, chronic fatigue, fibromyalgia, neurasthenia and POTS are all the same thing, but that it depends on your primary symptoms and the knowledge and specialty area of the diagnosing health practitioner - meaning 5 "experts" can look at the same person with the same set of symptoms, yet each diagnose it differently.

As for hope, YES! Cure? Maybe, maybe not. Improvement? Absolutely! It takes a lot of work, and a lot of trial and error, but you CAN feel better and live a relatively normal life.

The most important thing I've done for my heart flutters & gurgles & squeezing was take high doses of B6 for a few months. Since then, almost never is that a problem. (The heart is THE most responsive organ to nutritional therapy!) The doctors wanted to make me a lifelong cardiac patient dependent on drugs.

The most important thing I've done for my mental outlook, feeling of mental overload, and fatigue is whole food-based magnesium lactate. I don't seem to be able to live a life without it. Research indicates that nearly everyone with dysautonomic trouble is deficient in usable magnesium. The doctors wanted to put me on anti-depressants and anti-anxiety meds (even though I've never been anxious in my life!) that create dependencies and addictions.

The most important thing I've done for my inability to regulate body temperature and for chronic dehydration/constant urination is add cell salts to my water for a few months, and I now only use Celtic sea salt instead of table salt, because it retains its natural chemical makeup. Doctors have prescribed their fancy synthetic pills that the body doesn't know how to deal with, so you just end up trading one set of symptoms for another, which leads to a 2nd prescription to counteract the side effects of the first, and on it goes.

There are other things, but those above have been huge positives for me. No, it's not been easy. Not everything I've tried has worked for me or worked as well as I would like. And no, I'm not "cured." But I believe without a shadow of a doubt that if I was still listening to and continuing to follow the directions of the many doctors I desperately consulted for so many years, I would be bedridden and probably would have succumbed to at least one nervous breakdown by now. (I was sooo close to that more than once!) I also wouldn't be able to hold down a busy, full-time+ job and teach one night a week and enjoy very structured rehearsal/performance opportunities as I do today.

Yes, I mourn the losses of my "previous life," but I am still able to have a life - albeit rather different from what I had planned. You can, too! Just keep researching and trying things, and above all, don't ever give up.

[Michelle Sawicki]

Hi Veryblue,

If you really do think you have POTS or any other type of dysautonomia you should see a specialist. They will be able to tell if you do or do not have a form of dysautonomia. I encourage you to do this.

In all honesty, you don't sound like you have POTS to me. Most of the people on this forum would kill to be able to be servers in restaurants, go for walks, play softball, go bowling, stay up late and party. You sound like you are a lot healthier than the majority of us.

I worry that by reading our posts you are causing yourself unneccesary worry. Most everyone on this forum has been diagnosed with some form of dysautonomia, and this forum is a supportive place for them. But if you haven't been diagnosed with dysautonomia our posts may seem downright frightening. That is why we specifically state in our disclaimer that this forum is for dysautonomia patients and caregivers. We don't want to scare anyone. I honestly don't know if this is a good place for you. Please think about it.

Michelle

[ethansmom]

Veryblue,

I am sorry that you are feeling so frustrated by all of this...even if you don't have POTS we still understand because many of us went through long periods if misdiagnosis and wondering if we had finally found "the answers". The truth is, there are no clear cut answers sometimes, and I definitely think you should see a specialist to determine if you do have some form of dysautonomia...that way you can put your mind at ease What area do you live in? Have you tried to get in with anyone yet?

[Guest veryblue]

Well I cant seem to find any doctors anywhere. I live in Nebraska part of the year for school, and in California the rest if the year. There are no doctors in either place. I tired to get into Mayo Clinic, but the head of the autonomic lab didnt think it was necessary for me to go there. It's like nobody cares. I just want this to go away whatever it is!

[nantynannie]

Very Blue,

What part of California? I found a doc at UCLA who specializes in dysautonomia and sleep disorders. Her name is Frisca Yan-Go.

Ann

[RunnerGirl]

Veryblue writes:

<<But if that bull is true then where are the people that have recovered! Where are they? I just want to hear from one person who was gone through this and is normal again!>>

First of all, I'd like to offer a theory - a theory that presupposes that MOST people who have recovered fully from POTS, IST and/or another type of dysautomomia simply don't make a habit of frequenting support boards on a regular basis. Sure, there are folks that will no doubt visit from time to time - out of the kindness of their hearts- to OFFER the very thing you seek: HOPE and a true success story. But let's face it - probably most of us who come here are still SEEKING support, answers, advice, etc. on how to cope with an existing condition. That's the nature of support boards, I'm afraid.

Second, there are clearly folks who ARE on this board that have had extended periods of remission, or a MAJOR reduction in symptoms (Deb's story is a great example of that), and lead full, active, and productive lives. While I never received a formal diagonsis of POTS, I had several hallmark symptoms of autonomic distrubance, which began spontaneously in the Fall of 2002. Like you, I considered myself bright, young, healthy and athletic - at age 31, I was training for my second marathon at the time, working a six-figure salary job, and enjoying a vibrant social life. As you've probably seen in the quality of posts on this site, MANY of us here are well-educated, relatively young women who, prior to falling ill, enjoyed success both personally and professionally. Whether we're attorneys, computer whizzes, college students, nurses, or full-time homemakers and moms, we ALL lost something when we became ill. In short, your situation is not unique. I'm not trying to take away from your personal experience here - I'm just trying to get you to understand that you are not the only "smart young lady, athlete, fiancee, aspiring professional" to have her world turned upside down by a chronic illness. And having experienced this doesn't make you a "freak."

In an instant, and without any warning, my world changed dramatically: ER trips for a racing (and sometimes irregular) heart beat, waking up in the middle of the night with panic-like feelings, blood pressure spikes, sweats, etc. Being told I might have a rare adrenal gland tumor. Countless medical tests for heart disease, pheochromocytoma, carcinoid, MS, etc. A $14,000 workup at the Mayo Clinic. And, of course, intimations that this was "all in my head." Those were definitely some of the darkest days of my life...

...and yet, today, thank God, I'm so much better. It was a slow, but largely spontaneous, recovery. I have loads of unfilled prescriptions for various beta blockers and SSRIs. I would try a super-low dose of each, feel worse, then decide to go with my gut instinct: to let my body heal itself. Not everyone has that option, as their symptoms are simply intolerable and their quality of life is nil. But I was fortunate in that I was able to tough out most of the bad days. I do still have some unexplained bouts of tachycardia and ectopic beats here and there; still some unexplained waves of nervousness; still some bad days. But I've run two marathons in 2004 already. And I love my life - even more than my pre-illness one! The single biggest difference between now and pre-illness is that I cound EACH and EVERY GOOD DAY as the ultimate blessing. While I NEVER want to relive those dark days, I DO consider myself lucky that I gained such a perspective on life at such a relatively young age.

Good luck to you in your own journey...

RunnerGirl

[leah1321]

HI,

one, I wanted to know if you have had a liver test? Taking that much pseudophedrine is very very bad for you! Don't do that. It is basically speed. Have you had an echocardiogram? Maybe you have damage or other things wrong with your heart. Maybe you do have some form of IST. See a cardiologist. I had an ablation done for my arrythmias and it made it so that my standing heartrate does not jump from 90's to 200's in less than a minute. I still have an increase, but it is slower and not as dramatic. I also take many many medications that help control my POTS symptoms. Actually, I believe I have a more generalized form of dysautonomia that is autoimmune related. I have many GI symptoms, including two forms of dysmotility. I have Adie's pupil, I have adrenaline shakes and terrible insomnia. In fact, when I have the adrenaline rushes I cannot rest. I feel horrible, but I cannot take a break or I will just focus on my heartrate. I do not get dizzy with these until the crash (and the crash is bad, but much shorter in duration than before meds). Instead, I get terrible sharp pains in my head and migraines and flushing and many other problems, including very high blood pressure. My bp is high most of the time. I was initially diagnosed with VV syncope because I had high bp that dropped while I was standing. Mine went up first too and really went up. Then it would zoom down to something very low. Florinef controls these drops, but I do have high bp most of the time. My diastolic is scary a lot of the time, so I have to be careful. Another problem that dysautonomiacs get is diastolic and systolic narrowing- sometimes my BP will be like 110/105. This does not feel good. I take about 15 medicines a day and I now have a fairly normal life. I suffer almost constantly from terrible pain and I have a very restricted diet. I am practically nocturnal and need to take very good care of myself. At the same time, I get bad blood pooling in my legs that is very visible and painful. I do not get as dizzy or have the bad blackouts 40 times a day anymore, but I do feeling like c$#p when I stand a lot. I used to feel the worst sitting actually. When i would stand for a while and then sit, I would just lose it. Now, I push and push and push and even if I think I am going to die, I push more. I am 23, a grad student and a nanny and I need to do certain things. I can shop and I can walk two miles. I do rest and squat and even sit on the floor of dirty NYC stores, subways, etc. I mostly take the bus and ask for a seat. I am not better, but I am controlled. I am no longer bedridden and I have slowed the progression, but I am definitely getting worse.

I think that people who are better and people who have been on these forums for a while no longer check them or post. I cant dwell on it too much anymore because I have read so many books and articles and know my possible future and I get upset thinking about it. I think you need a cardiologist and neurologist and put those FIRST in your life. Working is very important, I understand that. But, you need to know what aggravates your illness, why you got sick and what your prognosis is.

By the way, what do you mean when you say you feel awful? What symptoms bother you most? You should look into many different forums and monitor them for a while and see what seems like a good plan for you. I did that 6 years ago and I was able to figure out a gameplan from my sofa when I could barely stand. I hope you feel better soon and discover what it is that makes you feel like not you anymore.

Leah

[Michelle Sawicki]

You might find this post helpful:

http://dinet.ipbhost.com/index.php?showtopic=388&hl=

Michelle