Kris4444 Posted January 29, 2016 Report Share Posted January 29, 2016 I had my ANS testing today. It's the second time for me. The last time was at Mayo in2013 all was normal except for my high NE levels. We ran blood work for those again too but they aren't back yet.I was shocked that my tilt table test and breathing (valsalva) tests were both abnormal. I don't know how to feel. I so desperately want answers and want to be able to get back to living my life as I had been. I was a very active person (pro horse trainer) who now suffers from flushing, sweating, vertigo and tremors when exercising or riding. I can't tolerate heat or cold.I was told that for the breathing part of the test that my bp would drop but my heart rate would increase. Same thing with the tilt table, the initial reaction was a large drop in bp but then it would rise and become high, stay steady but my heart rate continued to increase! I did feel light headed and dizzy for a little while and my vision became distorted.My doctor explained to me that my parasympathetic nervous system and my sympathetic nervous system are affected. He explained it to me in an interesting way. He said to imagine that my para symp was the brakes on a car and the symp was the gas. He said that my brakes are pushed all the way down and not really working (vagal nerve involvement) and that my gas pedal was pushed all the way to the floor and just wants to keep going and going. He said that I run very high and that I am quick to react to stress or confrontation. He said that I'm the type of person that if I lived in CA and there was a massive earth quake that I would drop dead! Not comforting. Clearly, we need to get my heart rate and bp to calm down.He prescribed nadolol. 1/2 a tablet for one week then to increase to full 20 mg after a week. He also is suggesting a drug called salagen which he thinks will help with my gastroparesis as he feels that the vagal nerve has been damaged. He said we would wait on the salagen and see how I do first on the nadolol. He thinks it is possible that my autoimmune disease has caused the ANS dysfunction but I guess there is no way to prove it. I know that I never had these problems until I got sick.We are still waiting on the results of the catecholamine testing. He said he believes it will be high again. If too high we will have to look for a pheo but he thinks it will be normal to moderately high which goes along with the symptoms he saw today. He said I flush a lot, he noticed it on and off during the course of the exam. I don't even notice half the time.Does anyone else with Hyper Pots use the drugs I have mentioned? If so, did they help you? Thanks! Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 30, 2016 Author Report Share Posted January 30, 2016 What is NCS? I took Losartan for my Raynaud's attacks years ago and it worked well for me. He started me on nadolol which is a beta blocker and I think I had issues with fainting on beta blockers in the past but I can't remember the name of the drug.Thank you for the response. I am hoping we can figure things out so that at least the simple things, like cooking dinner, can be fun again. I'm glad that he founds some clues but I'm concerned that every test I have lately has been abnormal. I really didn't think we'd get anything useful since my stuff at Mayo in 2013 was normal. I guess time changes everything.I'm still waiting on the cathecholamine testing to come back. He's pretty sure it will be high. I'm very curious. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 30, 2016 Author Report Share Posted January 30, 2016 Nope, I fainted on norvasc which is a calcium channel blocker. Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 31, 2016 Report Share Posted January 31, 2016 Hi Kris! I'll PM you later. I just wanted to quickly mention that beta blockers are contraindicated for MCAS which I know you were going to look in to. If your chest starts feeling tight or like a weight is on your chest, please call your doctor. BB can cause mast cell degranulations. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 31, 2016 Author Report Share Posted January 31, 2016 I know Katie,that is my concern too. He said he was torn between which medications to prescribe. He was going to go with Tenex which is in the clonidine family. Instead he picked nadolol.We aren't done yet and he said it may take several tries to find what works. Should I say something? Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 31, 2016 Report Share Posted January 31, 2016 I think it's worth mentioning and paying attention to side effects. But, I was on a BB for a while before my mcas dx. It turns out it was making my breathing difficult, but not so difficult it sent me to the ER or ever caused me to use my epipen. Mine was more of a low grade constant feeling of weight on my chest making it harder to breath...like I had to make an effort. Once I had my mcas dx, I asked if the BB could be the cause and we stopped the BB to see what would happen with my breathing. It cleared up significantly and quickly, so we knew the BB were not for me. Since you are aware this could be a complication, you can stop it early on if you are reactive to it. I think we're all so different that I try new things because I never know what will work and what won't. For example, I get terrible tendonitis from Levaquin (a quinolone class antibiotic) but not from Cipro (also a quinolone). Quinolones are known to cause tendonitis and tendon rupture. Docs and pharmacists cringe when I say I can take Cipro but not Levaquin. But I have a bunch of antibiotic allergies and Cipro works. I can't explain it but I just roll with it. I know to be aware of how my tendons are doing while I'm on it so if things change, I can stop it. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 31, 2016 Author Report Share Posted January 31, 2016 I haven't noticed any side effects yet but I've only taken half a pill over the last two days. I will see how I feel when I ride or exercise as I have issues with breathing with both. I do notice a lot more itching of my sinuses so maybe it will be a problem.Thanks for the input. I will ask him about it next week when I'm supposed to email him unless something comes up before then. Quote Link to comment Share on other sites More sharing options...
kayjay Posted January 31, 2016 Report Share Posted January 31, 2016 I also was diagnosed with Hyper Pots by mayo clinic. Pheocromactoma was ruled out for me and I've been on nadolol since 2009. I was on 40 mgs at one time. Now I take 1/2 a pill every night (so approximately 10 mg) Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted January 31, 2016 Author Report Share Posted January 31, 2016 Kjay, do you have issues with flushing? I'm guessing the nadolol is helping you? What symptoms has the nadolol helped with? Thanks. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 9, 2016 Report Share Posted February 9, 2016 I have been using nadolol for a few years now and love it. My doc wanted me to get off it as he was concerned about the MCAS issue so I have decreased to 5 mg (1/4 pill) every day but I can not get off it without a significant return of POTS symptoms like tachycardia, tremulousness etc. I stopped it for a month and was so miserable he let me start up again with the idea of weaning down and eventually off it. I can get to 5 mg but not lower. Kris 4444- glad to hear you are finding more abnormalities this time with your testing. It was so frustrating after you trip to Mayo when nothing really showed up like you were hoping. Really hope this time you get more assistance. Sorry to hear you haven't been doing better. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 10, 2016 Author Report Share Posted February 10, 2016 Hi Chaos! Glad to hear that nadolol is helping you. It's helping me too. I was surprised to have the abnormal TTT and valsalva but not surprised that my NE was still high, my dopamine surprised me too. Not sure what to make of all of it.I'm also dealing with autoimmune issues, the newest being autoimmune hepatitis. The drug they have me on for it (Imuran) is causing nausea and vomiting so I'm not sure what is going to happen with that.Thanks for your response! Quote Link to comment Share on other sites More sharing options...
kayjay Posted February 10, 2016 Report Share Posted February 10, 2016 Kjay, do you have issues with flushing? I'm guessing the nadolol is helping you? What symptoms has the nadolol helped with? Thanks.Sorry for the slow response. I don't get on Dinet very often.I do not have flushing. I can't say that I never flushed but I don't think I do now. The nadolol seems to help by lowering HR and blocking some of what adrenaline does. I honestly never asked why I was put on it becuase at the time my blood pressures would get really high. My tilt table showed a heart beat increase of around 100 bpm. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 11, 2016 Author Report Share Posted February 11, 2016 Thanks. I just got my results today. I'm confused about some of them. May do a new post on it later. Quote Link to comment Share on other sites More sharing options...
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