Hyperadrenic Pots

[MomtoGiuliana]

PM me with your e-mail address. I can send you an article that describes the different kinds of POTS. It may or may not answer your questions. Symptoms have significant overlap. Only a doctor can tell you what kind of POTS you have (maybe). There's a lot still not understood. And from what my dr has told me, it doesn't really matter what type of primary POTS you have, it is still a trial and error to find the medication regime that will work for you.

[jolineshope]

Hi...I don't post to often but check in from time to time and this thread caught my eye, after reading all the posts, I decided to throw my two cents in.

I was first dx last year about this time with dysautonomia, by the University of Chicago. However, my doctors there had never seen this form before and didn't even know what to call it, other then an atypical POTS. At the time I was bedridden to the point that I could not sit up in the bed or use my hands to even wash myself. Even talking or laughing would send my BP and HR right through the roof, and then I would pass out (I did not pass out from low BP , because mine was always high and if I got physical it could easily get up to 230/117,but form severe tachy, that at times would reach over 240 beats per minute, sending my heart into fibrillation). So, in an attempt to try and help me my docs decided to try and treat me with the "usual" drugs used for POTS patients. The first drug they started me on was Midodrine. Now as you all may know Mididrine is used to raise the BP in POTS patients. So, there should be no surprise as to what was going to happen to me! Within about 2 hours my BP which while laying down would be around 147/98, went to 187/112. My HR while laying before Midodrine was averaging 98, and it went to 187. At this point my head was hurting so bad I could not think much less talk. My vision became so blurred that I could not see anything infront of me. By late that night the nurse called the on call service and by the time they came up to see me I had - had a TIA from the extreme BP, which was now at 250/137 with a HR of 215. Within minutes of that I coded. I ended up in NICU for two weeks. needless to say the Midodrine was stopped immediately. My docs were not convinced that the Midodrine was the culprit and so decided to try Florinef. Once again, a drug that is used to raise low BP, and again we would see the same event take place. Finally, my docs decided that this was not a type of POTS they could treat or even knew enough about to help me. I was then referred to Vanderbilt.

I was tested and treated at Vandy by Dr. Biaggioni, who sat and looked through my records from the University of Chicago, and could not believe that they did not get what was going on here, and could not believe that they would prescribe drugs for hypoadrenergic dysautonomia (POTS) when I clearly had the hyperadrenergic form and should have never been given any of those drugs. This appointment would be the first time I would be given a clear dx. Dr. Biaggioni would dx me with Baroreflex failure / hyperadrenergic dysautonomia / hyperreflexia/ SVT's. I would then learn that certain drugs would be a very big NO - NO !! among the drugs contadicted for my condition would be drugs that raise BP and or HR like Midodrine, Florinef, Mesitonin, etc.. other drugs that Vandy totally contradicted use of were SSRI and SNRI drugs . (which I had been tried on several different SSRI drugs while in the hospital but the side effects and the effect on the BP and HR were very serious and I was taken off of them immediately). Any drugs that raise the epinephrine or norepinephrine levels are never to be used in me. As well as these types of drugs there are many others that no one including Vandy seems to know why they would cause the problems that they have with my autonomic system, but according to Vandy it is not unusual for people who suffer from all forms of dysautonomia to have multiple chemical reactions. Vandy would also try me on a small dose of BB but said that these drugs only block the epinephrine and norepinephrine from being re-uptaked by the heart, where as for hyperadrenergic forms of dysautonomia, we need to have these levels inhibited from even being made in the brain. So, the better choice of drug was to use anti-cholernergic drugs like Aldomet. This drug would even help to tone down the adrenaline rushes that surged through my whole body and on many nights woke me from a sound sleep with a HR of 180 and a BP of 187/110. I would also be told to use both compression garments for my legs and stomach and I would be told to avoid all salts, but I should increase my fluid as much as possible. I can tell you that it took me three months of this therapy before I would be able to sit-up and walk from my bed to the bathroom. From there my abilities would increase at a very slow pace but the drugs have definetely worked. I no longer wake with adrenaline rushes, I have gone from needing nursing care, to taking care of myself and I now get out, but have to use a wheelchair with a service dog to pull it so as not to raise my BP. I still suffer from high BP and HR but not to the degree I did before the drugs. I still suffer with passing out quite frequently, but once again it too has gotten better. My local docs fax and e-mail Dr. Biaggioni at least once a month and he still coordinnates my care from Vandy. I am also doing cardiac rehab and TT training.

Anyway, there is a substantial difference in treatments from hypo versions of dysautonomia to hyper versions.You would not want to give someone drugs to raise BP if they are already suffering from this nor do you want to give someone drugs to lower BP if this is there main problem to begin with, becuase the consequences can be devastating!! In all last year I coded three times and my family thought they were going to lose me because of medical mistakes made due to the fact that most doctors who think they know about POTS believe that all forms can be treated with with the same "standard" group of drugs. This could not be further from the truth! Dr. Biaggioni made this very statement to me and my family after reading my past history from the University of Chicago and then reading my test results. So, I do not want to upset Doctrguest, but it is not true that all forms of dysautonomia can be treated from the same group of drugs, the hyeradrenergic group gets treated with completely different drugs, and some drugs are very well contradicted in us. Anyway, this is my two cents for whatever it is worth.

Joline

[doctorguest]

Dear jolinshope,

Thank you for sharing your story. I am glad you got help with the diagnosis and treatment at Vanderbilt University.

As you stated, the diagnosis made by Dr. Biaggioni was baroreflex failure/hyperadrengergic dysautonomia/hyper-reflexia/SVT. This diagnosis is not the same as "hyperadrenergic POTS". In fact, it refers to a completely different form and type of dysautonomia. Let me assure you and others that there are plenty of people with hyperadrenergic POTS who are greatly helped by either beta blockers, midodrine, florinef, SSRIs or a combination of these. Unfortunately, since you do not have POTS but another form of dysautonomia, these medications weren't a viable option to address your blood pressure and heart rate abnormalities, and I personally would not have used any of these medications in a patient with your type of diagnosis.

It is clear from your history that "all dysautonomias are not created equal" and that the term itself encompasses a variety of disorders of the autonomic nervous system with different causes, mechanisms and presentations. You are probably aware that most patients with POTS - whether hyperadrenergic or not - do not develop such severe blood pressure and heart rate variations to the point of coding and requiring ICU hospitalization, and thus, most POTS patients should not be concerned about their current medication regimen if it consists of SSRIs or other medications that were contraindicated in your case.

I wish you all the best in your rehabilitation. Good luck!

drg

[jolineshope]

Doctorguest - I have a question for you, can you please explain the difference between hyperadrenergic POTS and hyperadrenergic dysautonomia. I ask this because my local docs still consider my dx as hyperadrenergic POTS or at least they will refer to it as that. Yet Vandy always refers to it as hyperadrenergic dysautonomia. Obviously both forms fall under dysautonomia which just means the dis-regulation of the autonomic nervous system, so what then is the difference and why would one form allow you to be able to be helped by the "standard" POTS drugs but if those same drugs were used in the other form it becomes a devastating outcome?

Here is another question, both forms cause high BP's and high HR's , so why would the "standard" POTS drugs help the POTS form, why would it not send their BP higher? Also I don't know if you can answer this question but I will ask you, like I have asked my local docs. Why is it that most days I can keep my BP and HR under control and then out of no where I can wake-up and get hit with a day of extremes? Oh and some days my HR goes low but my BP will be very high and then other days my BP is very high and so is my HR, can you explain this, because my regular docs just keep telling me that they do not know why this is, but from what they know it is not unusual for dysautonomia. I know you may not know the answer to my questions either, but I would appreciate any knowledge that you may have.

Thank You in advance for any information,

Joline

[dino551]

Hi

I have always been wondering the same thing what kind of POTS I have. My POTS pretty much came out of no where. I take lopressor to deal with it. My sleep is always interrupted with POTS symptoms. I either wake up short of breath, chest pressure, dizzy/sluggish, or my legs feel funny (weak like). In fact, I do pretty good during the day when I'm active with my kids, but at night it is abnormal if I don't wake up feeling POTSY. Its very fustrating. Any suggestions or comments? Thanks! I've thought about what if I try florinef or something in addition to the lopressor. I'm also thinking about changing my anti-depressant from celexa to wellbutrin? My prescription plan doesn't consider celexa a preferred drug anymore.

Thanks

Chris

[MomtoGiuliana]

Chris--recommend you post these questions in the form of a new message to get more responses.

No one but your doctor can recommend medications for you. We can tell you our experiences however!

Katherine

[ramakentesh]

thanks

[morgan617]

This is quite the interesting thread!

I was looking to see where drguest started the ssri thing and couldn't find it. I think some signals have been getting crossed, but can't quite figure out why.

I have never been to Cleveland, vandy, mayo, NIH, or any big place with lots of specialists telling me all kinds of stuff. I do go to a great pcp that says he's certain I have baro reflex problems. You don't give meds that raise the BP to people with really high BP's, period. Whether it's constant or they spike all the time. Mine started out sporadic and then just got stuck up there, with the surges and flushes and all that swell stuff. So, I have never taken midrodine or florinef. Seems simple to me. I do not tolerate antidepressants, they always affect my heart, no matter what the reason is I'm taking them. So I don't take them.

I do take a relatively small dose of atenolol, which helps control the surges and BP and heart rate, although I ended up with a pacer (they feel may well be due to damage from the ablation I shouldn't have had) which causes fatigue, but no apparent mast cell problems on my end.

I do think I get the gist of what you were saying dr guest, but I'm just not not up on the big word explanations, and maybe others might have the same problem. I frankly don't really care which kind I have, I just know my doctor's going to make choices based on symptoms and not the "type." It hasn't killed me yet, so I'm good with my treatments so far. What I can and can't take really shouldn't apply to anyone else, as we all know this crap can be as different for people as it can be the same.

I appreciate everyone's input, but in the end , it comes down to what works for YOU and what doesn't. if you feel better or even the same, it's either working or not making any difference. if you end up in the ICU, it was obviously not the best choice and should be avoided. Simple and complex as hello...simplemorgan