Question On Mayo And Vanderbilt

[issie]

I do feel like sometimes some of the meds that i take make me feel much worse. Also, many of the drugs that i have been on gave such horible side effects, that i developed realy bad anxiety. I am so scared of taking anything and feel like i should drop all of them.

I personally, question a lot of the drugs that POTS people are put on. Some of what is happening with us is a compensatory thing and necessary to correct things.

Chris, Since you have the HyperPOTS DX - now you can look into EDS and MCAS. Lots of us with HPOTS - have these two other things too. Some sort of trilogy.

Issie

[seattle chris]

I do feel like sometimes some of the meds that i take make me feel much worse. Also, many of the drugs that i have been on gave such horible side effects, that i developed realy bad anxiety. I am so scared of taking anything and feel like i should drop all of them.

I personally, question a lot of the drugs that POTS people are put on. Some of what is happening with us is a compensatory thing and necessary to correct things. It may be uncomfortable - but, it could be keeping us alive.

Chris - Yes, drinking and being up all night - sort of goes by the wayside. Well, unless you are like me and have insomnia and stay up late - talking on this forum. LOL!

Since you have the HyperPOTS DX - now you can look into EDS and MCAS. Lots of us with HPOTS - have these two other things too. Some sort of trilogy.

Issie

They actually said I don't have POTS as I don't have tachycardia but it sounds very similar. I looked up the symptoms of EDS and MCAS and it doesn't sound like I have most of them (at least not yet). I will bring it up to my local doc next time though.

[issie]

"My official diagnosis was hyperadrenergic orthostatic intolerance. I had elevated levels of norepinephrine in two tests."

This DX confuses me then. You have high NE levels and orthostatic intolerance ---but, you don't have an increase in your heart rate with standing. So why do they think this is? Does your blood pressure stay the same, drop, or go up with standing?

Issie

[seattle chris]

"My official diagnosis was hyperadrenergic orthostatic intolerance. I had elevated levels of norepinephrine in two tests." This DX confuses me then. You have high NE levels and orthostatic intolerance ---but, you don't have an increase in your heart rate with standing. So why do they think this is? Does your blood pressure stay the same, drop, or go up with standing?

Issie

In past tilt table tests, my blood pressure dropped after standing, recovered and then declined sharply. During the most recent test, my blood pressure and heart rate reacted normally even after an injection of adrenalin. I also had normal results in all the autonomic testing. I have taken my blood pressure at times when I felt faint and there doesn't appear to be any correlation (it was usually normal or high). I spent several hours with the neurologist team but don't remember the answer to your question if they gave it. I am becoming more educated about these conditions over time and would like to obtain more feedback when I meet with my local neurologist in a few weeks.

[kayjay]

I currently have high Bp and low pulse. Haven't been able to get it above 100 for a few days. It's been 40-60.

I'm hyperadenergic but not sure i would meet the pots criteria at the moment

[issie]

The drop in bp is orthostatic intolerance - a different form of dysautonomia. My sister has this. Your NE levels being high is probably your bodies attempt to bring your bp up when it drops and is probably a compensatory thing to constrict your veins (as NE can do that) to help increase your bp. With POTS the heart will beat faster, tachy, to try to increase the bp. Sounds like your body may be using NE. Could be related to vasoconstriction or lack of.

Issie

[Psalm 23]

Kayjay,

Are you on any medications that are causing a reduction in you heart rate ?

Issie,

When I had my TTT my tachycardia hit the highest point at 5 minutes when my blood pressure was also at its highest point ( 160/104 ). At 10 minutes I was somewhat less tachy and my b/p was significantly lower. I guess I have an abnormal compensatory response ? I do have a very problematic labile b/p.

Janet

[issie]

My bp swings all over the place too. It's hard to predict what will happen sometimes. I can have a very slight drop in my bp and my tachy goes wild. And mine will fluctuate drastically --very fast. Some of us are so sensitive to the slightest change and our bodies go bezerk trying to correct it.

Issie

[kayjay]

Chris, The drop in bp is orthostatic intolerance - a different form of dysautonomia and doesn't meet the POTS criteria. My sister has this. Your NE levels being high is probably your bodies attempt to bring your bp up when it drops and is probably a compensatory thing to constrict your veins (as NE can do that) to help increase your bp. With POTS the heart will beat faster, tachy, to try to increase the bp. Sounds like your body may be using NE instead. Could be related to vasoconstriction or lack of.Kayjay, when your bp is high, there is no need for your heart to beat faster to keep your blood pressure up. When our bp's drop is when we get the tachy to try to increase the bp. That is more of a normal reaction.Issie

Actually no. It's not so simple. And no- a heart rate in the 40's is not normal for me although a spike in blood pressure can occur with bradycardia.

Recently my high Bp has been a RESPONSE to low hr.

Normal for me is high heart rate and high Bp.

[kayjay]

Kayjay,

Are you on any medications that are causing a reduction in you heart rate ?

Issie,

When I had my TTT my tachycardia hit the highest point at 5 minutes when my blood pressure was also at its highest point ( 160/104 ). At 10 minutes I was somewhat less tachy and my b/p was significantly lower. I guess I have an abnormal compensatory response ? I do have a very problematic labile b/p.

Janet

Janet- thank you for sharing! No the low heart rate isn't caused by medications. I did have some low hrs when i began the betas but it also knocked back my blood pressures. I do take nadolol but only a small amount and I've been taking it since 2009. If I had the high Bp first I would just up the nadolol.

I can tell you I feel better with a hr in the 190's than with a hr in the 40's.

Very puzzling for sure. I've had low hr episodes summer for some reason. The last time it happened it lasted for hours and my Bp was very high. My husband said in the in the er it was 185/122. With a hr in the 50's.

To the op- I hope you don't feel hijacked! I will say that some of us are so inconsistent with our hr and Bp. Figuring it out is like chasing the wind.

[kayjay]

Kayjay, when your bp is high, there is no need for your heart to beat faster to keep your blood pressure up. When our bp's drop is when we get the tachy to try to increase the bp. That is more of a normal reaction.Issie

I actually thought about this more- the whole idea of hyper pots- which I have- is that the increased adrenalin will increase heart rate and blood pressure. It's not an either or thing.

Adrenalin has certain effects on the body. Increased heart rate is one, increased blood pressure is another. It's more "normal" for hyper pots to have an increase in both. I'm sure any number of combinations are possible.

[Gemma]

Hi everyone. I was reading everyones messages and have a question. I dont have an official diagnosis yet. I definetly know I have some type of dysautonomia, but not sure which type. Can someone explain the diference of. Just POTS amd hyperPOTS, and maybe there is another one? I usually have low blood pressure, standing 90/55 with HR of 90-110. My sitting BP is 106/60 and HR 60-75. I feel lightheaded most of the time during the day. Had sudden onset of symptoms last december. Would my symptoms indicate I have just POTS? Thanks.

[issie]

Kayjay,

Are you on any medications that are causing a reduction in you heart rate ?

Issie,

When I had my TTT my tachycardia hit the highest point at 5 minutes when my blood pressure was also at its highest point ( 160/104 ). At 10 minutes I was somewhat less tachy and my b/p was significantly lower. I guess I have an abnormal compensatory response ? I do have a very problematic labile b/p.

Janet

Tachycardia can also occur because of low blood volume. If we are hypovolemic - it can be another compensatory thing.

Issie

[issie]

http://europace.oxfordjournals.org/content/11/1/18.full

Here's a good article showing that the swings with our heartbeat and release of NE may be a compensatory thing. More doctors are starting to come to this conclusion and more research is showing this to be the case. That's why, I question the use of meds to stop this compensatory reaction. If it's our bodies way of compensation, it is trying to correct the problem and unless we can come up with the exact reason for the compensationary response of our body and correct that ---this is our bodies attempt to right itself.

We need to quit trying to treat the symptoms and get down to the core reasons for things.

Issie

[kayjay]

http://europace.oxfordjournals.org/content/11/1/18.fullHere's a good article showing that the swings with our heartbeat and release of NE may be a compensatory thing. More doctors are starting to come to this conclusion and more research is showing this to be the case. That's why, I question the use of meds to stop this compensatory reaction. (Whether others want to agree with me or not, is beside the point.) If it's our bodies way of compensation, it is trying to correct the problem and unless we can come up with the exact reason for the compensationary response of our body and correct that ---this is our bodies attempt to right itself.We need to quit trying to treat the symptoms and get down to the core reasons for things.Issie

It really doesn't matter to me at this point "why" I have pots. At this point a cause is unlikely to be determined. Probably a combination of factors including genetics and autoimmune "triggers" are to blame for the onset in my case. All I can do at this point is treat my symptoms and that includes medications as well as diet and lifestyle changes.

pots is a "syndrome"- not a disease-so for me treating the symptoms is my main goal. I have a friend with ms and our goals are similar. We want to have the best quality of life possible, and we want to stave off as many future problems as possible.

I certainly will treat my pots related high blood pressure with medications, not only for the relief of symptoms, but also in an attempt to offset some of the damage that uncontrolled high blood pressure can cause.

IMO the suggestion that these are compensatory mechanisms is obvious. Our bodies are always trying to stay in balance. Passing out is a "compensation" and a symptom.

I'm a daughter, a wife, a mother, a friend- not treating my symptoms would be irresponsible and selfish.

[issie]

Hi everyone. I was reading everyones messages and have a question. I dont have an official diagnosis yet. I definetly know I have some type of dysautonomia, but not sure which type. Can someone explain the diference of. Just POTS amd hyperPOTS, and maybe there is another one? I usually have low blood pressure, standing 90/55 with HR of 90-110. My sitting BP is 106/60 and HR 60-75. I feel lightheaded most of the time during the day. Had sudden onset of symptoms last december. Would my symptoms indicate I have just POTS? Thanks.

HyperPOTS is associated with an increase in your standing NE (noriepi) levels of over 600 points, according to most docs criteria. Many of us also have high blood pressures when we stand. So many of us also have EDS (Ehlers Danlos) and MCAS (mast cell activation syndrome). Those of us that traditional POTS meds have not helped and who doctors are now treating with MCAS meds - are now showing improvements. I often say, it's hard to know what is a POTS symptom and what is MCAS. MCAS can occur regardless of posture or position and is very similar to a surge that POTS causes. There is no way to know based on your bp (for sure) whether or not you are HyperPOTS. But, some doctors have told some that they are based on their symptoms. All of us have some NE release as a compensation for posture - that is a normal body response. But, those that have an over-release that goes very high ----is extreme compensation. There are some doctors also starting to question if the body is not responding properly to NE (itself) and therefore the high release occurs.

Some of us HyperPOTS people have even experimented with increasing our already high NE levels even more and keeping the levels at a more stable level through the day - to see if it would help with the NE surge that we get. Many of us have found it to be helpful and the surges to lessen with time. But, unfortunately the med we were using stopped working at day three. But, many of us are holding it in reserve for a day when we need that extra boost to have a good, turned on day. (I found it to be hard on my kidneys with a week trial, and had to stop using it.) We were using the orginal Sudafed. It is similar to midodrine and has a vasoconstricting property. Interestingly enough, my blood pressure did not go higher with it.

http://en.wikipedia.org/wiki/Pseudoephedrine

Mechanism of action[edit source]

Pseudoephedrine is a sympathomimetic amine. Its principal mechanism of action relies on its indirect action on the adrenergic receptor system. The vasoconstriction that pseudoephedrine produces is believed to be principally an α-adrenergic receptor response.[9]

While it may have weak or no 'direct' agonist activity at α- and β-adrenergic receptors, the principal mechanism is to cause the release of endogenous norepinephrine (noradrenaline) from storage vesicles in presynaptic neurons. The displaced noradrenaline is released into the neuronal synapse, where it is free to activate the postsynaptic adrenergic receptors. These adrenergic receptors are located on the muscles lining the walls of blood vessels. When these receptors are activated by noradrenaline, the muscles contract, causing the blood vessels to constrict (vasoconstriction). The constricted blood vessels now allow less fluid to leave the blood vessels and enter the nose, throat and sinus linings, which results in decreased inflammation of nasal membranes, as well as decreased mucus production. Thus, by constriction of blood vessels, mainly those located in the nasal passages, pseudoephedrine causes a decrease in the symptoms of nasal congestion.

Issie

[issie]

I don't have time to respond properly to you kayjay - out the door.

But, we have to know WHY - there are too many possible reasons for the dysfunction. If we are treating compensatory response ----long term we will make ourselves worse and could wind up with CHF or CKD. I have the CKD (Chronic Kidney Disease). (I've nearly reversed my CKD with diet and working on my immune system.) I've always been one to question the meds used by doctors. And FLAT don't agree with what is being used. Long term - it could have disastrous consequences. I've never beat around the bush with this opinion. And now, many of the things I've been saying over the years are coming to light and doctors are starting to agree with what I've been saying.

Agree or disagree ----it's up to us what we do with our bodies. But, we can't blindly treat a symptom ---without knowing what the long term results may be. Long term, it may give less quality rather than more quality.

Issie

[kayjay]

I don't have time to respond properly to you kayjay - out the door.But, we have to know WHY - there are too many possible reasons for the dysfunction. If we are treating compensatory response ----long term we will make ourselves worse and could wind up with CHF or CKD. I have the CKD (Chronic Kidney Disease). (I've nearly reversed my CKD with diet and working on my immune system.) I've always been one to question the meds used by doctors. And FLAT don't agree with what is being used. Long term - it could have disastrous consequences. I've never beat around the bush with this opinion. And now, many of the things I've been saying over the years are coming to light and doctors are starting to agree with what I've been saying.Agree or disagree ----it's up to us what we do with our bodies. But, we can't blindly treat a symptom ---without knowing what the long term results may be. Long term, it may give less quality rather than more quality.Issie

In theroy I agree.

Practically speaking it isn't always possible to find the root of the problem. I personally have stopped looking for a cause and am doing ing every thing I can to stay as healthy as possible.

We do know that in the long term high blood pressure will trash your kidneys. If it was possible to control my blood pressure in any other way I certainly would. I think it's wise to question the use of prescription drugs but they also save lives. I am thankful for beta blockers. They have not only improved the quality of my life, they have also quite possibly prolonged it.

[Psalm 23]

I guess for myself I am desperate for an improved level of function and comfort in the present as well as if at all possible an identified root cause for all of these problems. I want it all. Lol. It is very complicated though as there is kind of a standard representative of a neuropathic pots as well as a hyperpots patient. Certainly there are particular criteria to be met for a diagnosis of either but beyond that other sub types exist as well and problems unique to each individual which I'm sure has much to do with the root cause of their condition. For myself I have a blending of hyperpots, neuropathic pots and hypovolemia with a lot of co-existing conditions. At last visit an autoimmune basis was thought to possibly be the root cause. Knowing that didn't change anything though. Recommended treatment remains the same. I'm returning to Mayo though because now I am wondering about MCAS as a possible contributor to my problems.

Kayjay I'm sorry you are having such a time with your hypertension and bradycardia. Blood pressure and heart rate can be so unpredictable at times with this condition. I agree with you that high blood pressure must be addressed for many reasons. I have a very labile b/p ( 80/40 - 200/110) so I am on a number of medications because I don't want to pass out or suffer any hypertensive damage. For me I also could no longer tolerate a standing NE level of almost 3000 so I take medication for that. I wish there was another way of managing these problems besides medication but I have not found one yet. So I am thankful at present for these medications. I hope your vital signs stabilize soon.

Janet

[kayjay]

I guess for myself I am desperate for an improved level of function and comfort in the present as well as if at all possible an identified root cause for all of these problems. I want it all. Lol. It is very complicated though as there is kind of a standard representative of a neuropathic pots as well as a hyperpots patient. Certainly there are particular criteria to be met for a diagnosis of either but beyond that other sub types exist as well and problems unique to each individual which I'm sure has much to do with the root cause of their condition. For myself I have a blending of hyperpots, neuropathic pots and hypovolemia with a lot of co-existing conditions. At last visit an autoimmune basis was thought to possibly be the root cause. Knowing that didn't change anything though. Recommended treatment remains the same. I'm returning to Mayo though because now I am wondering about MCAS as a possible contributor to my problems.

Kayjay I'm sorry you are having such a time with your hypertension and bradycardia. Blood pressure and heart rate can be so unpredictable at times with this condition. I agree with you that high blood pressure must be addressed for many reasons. I have a very labile b/p ( 80/40 - 200/110) so I am on a number of medications because I don't want to pass out or suffer any hypertensive damage. For me I also could no longer tolerate a standing NE level of almost 3000 so I take medication for that. I wish there was another way of managing these problems besides medication but I have not found one yet. So I am thankful at present for these medications. I hope your vital signs stabilize soon.

Janet

Thank you Janet! You are very sweet I'm a bit better this afternoon but I had to up my salt my last two sodium levels were low.

I should have communicated better- I wish I knew what caused my pots- especially because I have children and I wonder about them. Also I have control freak tendencys.

I just believe at this point I will never really know. My immune system is very healthy now. No markers of autoimmune and almost zero inflammation. I mentally have "moved on" a little for the sake of my sanity.

Thanks again for your kindness. I'm very sorry that you know what high blood pressure feels like. It's pretty rotten.

[issie]

We do know that in the long term high blood pressure will trash your kidneys. If it was possible to control my blood pressure in any other way I certainly would. I think it's wise to question the use of prescription drugs but they also save lives. I am thankful for beta blockers. They have not only improved the quality of my life, they have also quite possibly prolonged it.

My nephrologist said the constant swings in blood pressure is REALLY bad for the kidneys. He said variations in either direction will cause issues. He is all for my low-fat vegan diet and that ultimately has corrected my kidney issues. I also seldom check my blood pressure - as it is staying near normal even with standing. Addressing diet improves things if there is an autoimmune issue. I have also lowered my fasting blood sugar to normal. I'm on NO heart meds. (Of course, having MCAS - can't use beta blockers any way. As they make things worse.) But, I have tried every kind of medicine that is out there. I have seen what they do ---with my body. And with tons of research over the years ---decided this masking of symptoms is not the right way for me to go. I never gave up searching until the last year. I feel I have found my answer and no longer feel the need to "try to figure it out". I'm really into research and enjoy the science and technical things of it all. But, other than trying to help some of you here ---I've got my direction. I still have POTS and have good days and bad days ---but, I think I've got it figured out. There probably is a genetic component and then autoimmune and inflammation seems to be the underlying issues. (Of course, I also believe the biofilm/protozoa connection has something to do with it.) We are genetically pre-disposed to things and especially us that have inherited EDS and other sorts of things ----but, something usually has been the trigger and then the immune system isn't able to react properly. The whole system starts to malfunction. Working also on known methylation pathway mutations has been very helpful also.

There may be a time that I will have to go back on some meds to help buffer "symptoms" and I reserve clonidine for if my bp starts to do the drastic swinging again. Two months on it before leveled that out. But, for the most part - addressing autoimmune issues and changing diet has been the best treatment to date. But, it requires being very strict on it and really paying attention to details. It's not something one blindly decides to do ----but, I really recommend it. My husband tells anyone that has some sort of illness ---you need to do my wife's diet. He is a true believer himself. I've had something since I was 8 years old and he has been with me for 33 years and seen what all I've gone through and what all I've tried. This has absolutely been the best treatment ---to date.

Issie

[Psalm 23]

Issie,

We all do really appreciate the research and information that you share and your desire to help others. I am so happy that you found an answer you are content with and have discovered an effective management plan. You are correct in emphasizing the importance of ones diet. I have been on a low fat mostly vegetarian anti- inflammatory diet for quite a while now and am moving closer towards a vegan diet but am not quite there yet. My concern is that a vegan diet may result in more weight loss which I can not afford. I will have to ask my Nephrologist his opinion on veganism.

Interestingly in my case I was diagnosed with CKD stage 3 in 2011. After embracing all of the treatment recommendations made by Mayo Neuro my GFRs returned to normal. I do realize that having a very labile b/p is not good for my kidney ( I only have one ) and causes an increased risk of stroke but it's a problem that still requires a bit of working out I guess.

Kayjay,

I'm so glad you're feeling better. Maintaining normal sodium levels can be so difficult sometimes. Moving on and keeping your sanity is pretty important. Searching for answers is exhausting and can definitely drive one crazy. I guess I just haven't quite reached a satisfactory end in my search yet.

Janet

[issie]

Thanks Janet, Hoping something I've said over the years has made a difference for others. Is you Nephrologist here in AZ, Mayo? I saw one doc there - but, he didn't have many suggestions. I love the doc I have now - he's outside of Mayo. None of them has really addressed my having low renin and aldosterone. That doesn't seem to be very concerning to them. Just glad that things are going in the right direction. It is a good feeling to not have so many unanswered questions looming.

Issie

[kayjay]

Issie- I recently added a good probiotic to my routine. I don't know the brand off hand but it's kept in the refrigerator. I've used them before but this is the first time I've really noticed improvement.

I'm sure you are on top of it- but I thought I would mention it just in case. It's really hard to get all the nutrients you need on a restrictive diet. I'm gluten free/low fructose so I think about EVERY thing I eat.

Very boring!

[issie]

I do use probiotics. I've got to go get some more today, as I'm out. What is the brand you like?

Issie