Jordan5815 Posted July 2, 2008 Report Share Posted July 2, 2008 Hey Guys,First off my tilt table test showed I had pots, doctor never told me tho the nurse told me. The doctor was just talking about the ekg's that were taken during my so called "adrenaline surges" He said that something did not look right in one of the ekg's but said he wants to do an ep study with catheter ablation, he will also inject adrenalin into me. He is also doing a heart mri, sleep apnea test, also getting me checked for chronic fatigue syndrome. I think he could be driving past the root of the problem.....Problem: I don't know what he is doing because he never even told me the ttt came out positive for pots. I also believe I have the hyperadrenergic form of pots.Reasons: My blood pressure rises upon standing and goes up the longer i stand up. Heart rate goes up "instantly" upon standing. This occured gradually and it is progressive keeps getting worse. Worried: I read 2 articles one by Dr. Grubb that states getting catheter ablation can worsen symptoms even more then they are currently for the hyperadrenergic form. Secondly I remember reading somewhere that injecting adrenaline can be life threatening for that form of pots.Is there a blood test that I can have done by my primary care physician that can tell even more if it is hyperadrenergic pots? also is it safe to have both of those things done?Problem With Test Also QuestioOne more question is I believe that this could be secondary to an disease I could have.Reason: I'm 18 now when I was 14 I lost 40lbs in 2 months got acid reflux surgery because the doctor believed that was the problem and it turned out that i lost 20 more lb's after that. I still have not gained my weight back but have not lost it either so we quit trying to get to the bottom of it. Regular heart palpatations started when i was 16 with minor chest pain now it is way worse and definately have pots as well...... Last question: those with pots do you also have your heart rate shoot up with exerting very small amounts of energy? suppose lifting something? Thanks,- John Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 2, 2008 Report Share Posted July 2, 2008 John I don't know, but those a serious concerns. I hope its all cleared up before you have the ablation or the adrenalin test! I would seek out "the best in the business"before having those done. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 2, 2008 Report Share Posted July 2, 2008 John, my 2? here, if it were me: I wouldn't let anyone do an ablation until I was seen by 1) a doctor who I have good communication with (i.e. not failing to tell me my diagnosis!) and 2) that I trust is very well versed in what an ablation can do to a POTS patient especially. An ablation is not something you can get undone if it happens to make you sicker--it permanently kills off cells in your heart so that the nerves there can no longer make your heart speed up. Weigh the risks and decide for yourself what to do. Don't let anyone or any doctor make that decision for you.Nina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted July 2, 2008 Report Share Posted July 2, 2008 From the main DINET site, under "what to avoid""Ablations may be detrimental to POTS patients. A Mayo Clinic study reported short-term success in five of seven ablated patients with inappropriate sinus tachycardia and postural orthostatic tachycardia features (Shen, Low, Jahangir, Munger, Friedman, Osborn, Stanton, Packer, Rea & Hammill, 2001). However, long-term outcomes were disappointing in these patients. None of the patients experienced complete eradication of symptoms. A follow-up evaluation showed no vast improvement in symptoms, despite better heart rate control. A later publication states "in our laboratory, sinus node modification, total sinus node ablation, or atrioventricular nodal ablation is not recommended for patients with inappropriate sinus tachycardia who have autonomic evidence of postural orthostatic tachycardia" (Shen, 2002).Ablations have reportedly been detrimental to some POTS patients who were misdiagnosed as having inappropriate sinus tachycardia. After the apparently successful elimination of their "sinus tachycardia", they were left with profound orthostatic hypotension (Grubb & Karas, 1999)." Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted July 2, 2008 Report Share Posted July 2, 2008 Dittos to what Nina said.YOU ARE IN CHARGE OF YOUR HEALTH CARE. Not a pushy doctor.i would never give consent for an ablation. Yes, you need a doctor that respects your input.My heart rate jumps from lying to standing 40 points or more ( spend most of my days reclining or laying in bed in between basic things)Using our arms to lift or even raising them over our heads makes MANY of us symptomatic. I am sorry you are scared and being pushed but remember, the more you know, the more you can learn to say NO.Do keep us posted and M Mouse gave great advice. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted July 2, 2008 Report Share Posted July 2, 2008 Hi,I agree. Make sure you are working with a dr. competent in POTS etc. and explore all avenues prior to ablation. Research shows that for many it is not the first or best route to go for treatment. Also, check with the dr. to make sure that both of you are understanding each other, because it sounds like he is not communicating fully and it is possible that he was talking about something else or ablation down the road after everything else has been exhausted. Not sure... It can be difficult sometimes if they do not communicate well... Quote Link to comment Share on other sites More sharing options...
jump Posted July 2, 2008 Report Share Posted July 2, 2008 I'm sorry you're having a hard time with doctors!I think that you're probably right and should be continuing to pursue the cause of this mysterious weight loss with your doctor. That's a lot of weight to lose for no reason. POTS can sometimes be caused by dramatic weight loss, so maybe that's how things got started? Regardless, that sounds like a serious symptom to ignore.good luck,jump Quote Link to comment Share on other sites More sharing options...
Jordan5815 Posted July 4, 2008 Author Report Share Posted July 4, 2008 Firstly,Thank you all for responding I really really appreciate it and great advice was given! Sorry for the delay I have been in bed for a little while and right now I'm feeling pretty good. Hi,I agree. Make sure you are working with a dr. competent in POTS etc. and explore all avenues prior to ablation. Research shows that for many it is not the first or best route to go for treatment. Also, check with the dr. to make sure that both of you are understanding each other, because it sounds like he is not communicating fully and it is possible that he was talking about something else or ablation down the road after everything else has been exhausted. Not sure... It can be difficult sometimes if they do not communicate well...I am not ignoring that research at all, infact that is why I'm a little freaked out right now about having it done. My doctor wants to have it done right away he does not mean anything else and i did not misunderstand him.... He is pretty arrogant which I do not mind if he would listen as well...I'm sorry you're having a hard time with doctors!I think that you're probably right and should be continuing to pursue the cause of this mysterious weight loss with your doctor. That's a lot of weight to lose for no reason. POTS can sometimes be caused by dramatic weight loss, so maybe that's how things got started? Regardless, that sounds like a serious symptom to ignore.good luck,jumpyes the weight loss is questionable to me very. I need to get more into that...BTW, primary care physician prescribed me valium which seems to help alot with those bad attacks I get which is not anxiety attacks.... I can see a difference in it tho but don't want to stay on it.Quick question tho: I went to the ER recently because when I was having one of my "Attacks" my heart was going in the 200's skipping and throwing in extra beats and got really freaked out ambulance picked me up because i could not move both my legs were numb and arms.... so could not get up had someone call for me. They could not do anything for me after I told them what I had, had severe chest pain and they gave me morphine for that.....One thing about that morphine and want to know why it did what it did. They injected the morphine into me and i stayed for 2 hours after that.. My eyes are always dialated and when i was on that they were not... I said hey I want to check something they kept me on the heart monitor to let me get up and my heart rate stayed in the 70 beats per minute range upon standing when I was on it...... Does anyone know why that would be? What the heck is in morphine that would completely get rid of pots while it is active???????? I want to get to the bottom of that!- John Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted July 6, 2008 Report Share Posted July 6, 2008 Hi,Got to hate those arrogant drs. I just wanted to make sure that both parties were understanding each other because I know I tend to have that issue with drs. As far as the morphine, I am not sure to why it had that affect for you at that time. It can slow HR. I have had it, but I am allergic, so my response was different... Hopefully someone will listen soon! Quote Link to comment Share on other sites More sharing options...
mkoven Posted July 6, 2008 Report Share Posted July 6, 2008 Having just spent a week in the hospital for chest pain which has been determined to be autonomic, I was offered morphine regularly. Apparently it relaxes the vessels. Like ajw, we learned the hard way that I am allergic. (Many opiates trigger mast cells--there are very few that don't make me itchy.) Quote Link to comment Share on other sites More sharing options...
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