hyperpots Posted November 1, 2011 Report Share Posted November 1, 2011 Not sure if my POTS is hyperadrenergic or not. Dr. wants to do more testing.He had me hold one arm up and the other by my side for a minute. I brought both hands together and one was pale white, the other dark red full of blood. It took about 3 min. or so for them to = again in color.Dr. says this is whats happening in my entire body, even the brain.Says my body thinks I'm having a heart attack all the time, thus the constant Adrenaline which is a Psysiological anxiety and even the Shortness of breath, and get this, even the crying, which I have said all along feels like a Symptom.Says he has seen this before and a combination of a few drugs will make me feel normal in as little as 3 days. Is this possible ?????The drug will be Midridone and another I can't remember the name of. He says I need to get my blood pressure up and that in a years time, I could wean off the meds and no longer need them.Says, my Lyme may have caused this initially, but is not causing my crazy symptoms that I have so long associated with the Lyme and Co-infections.Says B-blockers make the condition worse b/c although they lower the Heart Rate, they also lower BP, which is counterproductive. Says the high HR is the bodys way to try and compensate for the pooling of the blood.He wants to repeat another Tilt test without Isoproterinol and then some breathing test. Then I can start the meds.Great news if this is true, but I have to wait a week to start meds, b/c dosing is based on these other tests, so I'm sick about waiting to start them.Someone please tell me the constant Heart Attack feeling, Shortness of Breath, Crying jags, Malaise, Fatigue, body aches, drooping eyelids, etc. can be fixed by simple meds and in the short amount of time he is talking about.This would a miracle for me and my kids.So, before I left, I asked, is this Hyperadrenergic POTS. He said, lets wait and see what to call it after the Tilt test, despite having a pos. Tilt test already. I'm still a little lost b/c I don't pass out when I stand up, just lots of tachycardia and feel like I'm gonna fall over b/c my balance in my head goes way off.Appreciate your comments.Steven Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 1, 2011 Report Share Posted November 1, 2011 Interesting. I have never heard of a doctor make such a bold assertion--that anything at all can be definitely cleared up in 3 days, much less something as complex as POTS. It is possible that you could eventually wean off, as this is the case for many people w POTS including some of us on here (including me). POTS is a dynamic condition and for some it does resolve eventually and for many it does improve.I have to disagree that b-blockers "make the condition worse". It really depends on the individual. Beta blockers have been helpful for me, and for many others and are widely recognized as a treatment for POTS.I also do not believe a tilt table test alone will diagnose hyperadrenergic POTS. There are specialised tests needed and furthermore I am not sure there is agreement in the medical community on how to define hyperadrengergic POTS. Definition of POTS is heart rate change of at least 30 bpm from prone to standing. It has nothing to do with blood pressure. Blood pressure for some of us does not change, for others it increases, for others it does go down, for others it can vary.I hope the meds help you and you do start to feel much better soon. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 1, 2011 Report Share Posted November 1, 2011 Here's an overview of medications used for POTS, including discussion of beta blockers...http://www.dinet.org/what_helps.htm Quote Link to comment Share on other sites More sharing options...
Brye Posted November 1, 2011 Report Share Posted November 1, 2011 I don't know if he's right or not but I hope for you he is. How great would that be. I have POTS but I haven't gone further to find out what kind. Just treatiing symptoms for now. Too hard to travel to see specialist. Symptoms are tolerable for me right now. Good luck. Let us know how it works out!!!Brye Quote Link to comment Share on other sites More sharing options...
hyperpots Posted November 1, 2011 Author Report Share Posted November 1, 2011 MomtoGiulana,Please don't get me wrong on the Beta Blocker. He was talking about the use of it as it pertains to my case. I asked if my case was Hyperadrenergic Pots. I took him labs showing excess levels of Norepinephrine, yet my Blood pressure goes up on Standing to about 150/90, but then returns to say 110/90. Laying down, I may be 120/80.So, I'm pumping out tons of Adrenaline, but not having the Blood Pressure expected response. This is why he is not sure what type of POTS it is. I already had a pos. Tilt Table 2 years ago that I took him that was done with Isoproterinol. I didn't pass out, but my heart rate went nut to 190.My resting HR can be 70-110 right now and I always get the 30 point bump or higher on standing... I just don't pass out.It is an Orthostatic Intolarance form of POTS. He says he has seen this presentation many times and it is one of the easiest to treat, yet people present with the most severe type of symptoms.Best I can do for now,Steven Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 1, 2011 Report Share Posted November 1, 2011 Thanks for clarifying on the beta blocker issue.POTS is a type of Orthostatic Intolerance (OI)-- everyone who has POTS has OI--so not sure what is meant by an orthostatic intolerance form of POTS.I thought midodrine was typically used for patients with low-side bp, and it sounds like you are saying you do not have low bp? I believe it raises bp. I don't know anything more about this medication and have never used it. Although many here do or have. That's great that he is confident he can treat you and hope it works and you feel a lot better soon. Quote Link to comment Share on other sites More sharing options...
hyperpots Posted November 1, 2011 Author Report Share Posted November 1, 2011 The other drug he said to use that I could not remember the name of is on the dinet link you gave me:It is MestoninI have been told that I have Parasympathetic excess driving up my Sympathetic from an ANS test I had.I hear you that we all have OI, he just could not tell me the name of my specific type as of Yesterday.. I will seek clarification on my f/u Thursday visit.He said he would use Mestonin and Midridone combination to clarify !!Can you add your thoughts now that I know the name of the second drug.Steven Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 1, 2011 Report Share Posted November 1, 2011 That is a very bold statement to say to you... I mean talk about getting someones hopes up! I am on midodrine, and it helps me stand longer and be able to get out of bed. However, it is not miracle cure. Most days are still bad days for me and I can still pass out. Not trying to say that you wont get better and I sincerely hope you do, but it would stink to truley believe in just three days you could be back to your old self and then find out thats not the case! Quote Link to comment Share on other sites More sharing options...
lieze Posted November 1, 2011 Report Share Posted November 1, 2011 I'm so glad that things are sounding positive.I can relate to what he said about the beta blocker in my case I think it was counter productive and downright unsafe for me most likely.Please let us know how things go for you : )Hang onto hope because I do think one way or another you will get some relief. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 1, 2011 Report Share Posted November 1, 2011 On the side note, you dont know how you will tolerate the meds. I couldnt do florinef or mestitonin. Midodrine gives side effects, but I just deal with them. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 2, 2011 Report Share Posted November 2, 2011 I think I can kind of understand what he means. I have hyperPOTS--my heart rate goes up the 30 bpm AND my blood pressure goes way up on the TTT. It goes from an average 110/72 laying down, to around a high of 170/110 after 15-20 minutes. I think what your doctor is trying to point out is, as we stand, we pool, so some of us(hyperPOTS people) have bodies that overcompensate to get blood back up to the brain, so our adrenaline flows to constrict the vessels. This causes such a high b/p.I think what he may mean is IF we didn't pool in the first place, then there would be no need for the body to overcompensate by spewing out adrenaline. Having midodrine on board would provide us with a little vascular tone to prevent some of the pooling.Where is this doctor?? I would love to be his patient!BTW, I could never tolerate any of the beta or alpha blockers. I think they just tended to make me pool and then the adrenaline could not kick in to help out. I ended up with a standing b/p of 75/45. Quote Link to comment Share on other sites More sharing options...
anna Posted November 7, 2011 Report Share Posted November 7, 2011 Sorry but I am going to sound really stupid now, if a 'normal" non POTS person holds their arm above their head and one at their side do they to have one white hand and one blood swollen hand?!!!!! Quote Link to comment Share on other sites More sharing options...
lieze Posted November 7, 2011 Report Share Posted November 7, 2011 You know prior to my POTS exacerbation I always had trouble with that now that you mention it.I tried to exercise and do aerobics for years whenever it was the hands above the head for any length of time my hands and fingers got really tingly. Quote Link to comment Share on other sites More sharing options...
derekliz Posted November 7, 2011 Report Share Posted November 7, 2011 Was wondering how you are feeling? Are the meds.working? I hope.soLiz Quote Link to comment Share on other sites More sharing options...
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