Kris4444

I struggle with this every day too. I've lost most of my "friends" over the years because they really just don't understand what I'm going through and as you said, we "look" normal. Then there are the times when I don't look normal because I've ridden my horse and I'm lobster red and shaking and sweating and that turns people off too, it makes them uncomfortable to be around me. Sometimes it feels like you just can't win. I've noticed that my husband and my Mom tune me out when I talk about doctors visits or start complaining about how I'm feeling. Sometimes I'll just stop talking in mid sentence to see if they are listening and they don't even seem to notice. When I start to turn inward I come here. There is ALWAYS support here. I don't know what I'd do without these forums and the people here who really do understand and get what we are going through because they are going through it too. Today I had a lady from another forum send me a private message thanking me for taking her under my wing. It made my day that I could help someone, make them feel better, rest easier. That's what it's about. I realized that when I've been feeling better I tend to stay away from the forums and that is quite selfish really because there could be someone reaching out that I might be able to encourage as I have been encouraged when I was down. Keep your chin up and know that you have a caring community behind you!

I know the root is different. I know that when I'm exercising or riding I'm not having a psychological issue yet the end result to the body is the same. Just mind boggling.

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!

Glad to hear you are starting to feel better Katy!

NE is 112-658 pg/ml Dopamine is less than 10 pg/ml

I just got the results of my testing. Last time I was told that my NE should double upon standing, which it did, bringing it to 1199. This time my supine NE was 855 and standing was 990. My dopamine was really high this time, 41 supine and 37 standing. During this test things went terribly wrong. They put the IV in and left me alone in a well lit room. Drew the blood after 30 minutes. Got me up and standing for 10 minutes but when they went to draw the blood it was barely dripping out of the IV. They had a nurse come in and for the next 20 minutes they poked, prodded, twisted and turned that darn needle trying to get blood to flow freely. They were trying to fill 5 vials. We had to stop at 4. I was not allowed to sit and I bruised TERRIBLY from all the poking. I don't think they do the testing there often, this is a new ANS center. I don't know if I should ask to have the test redone or just go with the high supine numbers and disregard the rest. They said that the reason it took so long to get the standing results was that they had to be rerun for some reason. Anyway, It was my understanding that the NE should double. Isn't dopamine a NE antagonist? So if my dopamine is high could it be keeping the NE down?

I had my catecholamines retested and my doctor said that my dopamine and norepinephrine are still high. I also had an abnormal TTT and valsalva. He said the cathecholamines were high due to autonomic hyperactivity not an adrenal tumor. When I googled autonomic hyperactivity anxiety disorders popped up. I was surprised how much they have in common. It got me thinking.

That is good to know! If I get denied again this time I will definitely look into it.

I'm hoping to not have the expense of a lawyer.

Yes, this is through the state as well. Were you approved Katy?

Thank you. Was this your first time applying? Do you think you are close to getting a decision?

I have filed for disability and have been set up to meet with a psychologist. I'm guessing it's due to all of the medical problems that I have from Hyper Pots to autoimmune disease. I wondered if this is standard or is this unusual? Thanks.

My cathecolamine testing came back and I have high dopamine and norepinephrine. My doctor said it was due to autonomic hyperactivity and not an adrenal tumor. When I did a search on autonomic hyperactivity, a lot of anxiety info popped up. When you compare the two, they are very similar. I wondered what the differences are? My tilt table was abnormal with a drop in my blood pressure and a continued rise in my heart rate on standing. My valsalva was also abnormal with the same sort of resutls, drop in pressure, raise in heart rate. My doctor said that I flushed on and off during our entire visit. Would these results be similar if one was suffering from an anxiety disorder? I do not believe that I have an anxiety disorder and I don't think my doctor is suggesting that either. He prescribed a beta blocker which seems to be helping when I exercise or ride my horse. I am concerned though because I have a flushing disorder which may be mast cell related so I'm not sure a beta blocker is the right drug for me. I'm curious to know what the difference is between Hyper Pots and anxiety. Thanks in advance for any info. -Kris

Kjay, do you have issues with flushing? I'm guessing the nadolol is helping you? What symptoms has the nadolol helped with? Thanks.

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.

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?

Nope, I fainted on norvasc which is a calcium channel blocker.

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.

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!

Great information Janet. Thank you! I'm seeing a new neurologist who thinks I present with a mast cell disorder. He is also re-running all of the AND testing. I'm hoping to get some answers.

Last time I looked into this I saw an immunologist but I'm seeing a lot of oncologists deal with mast cells? Who do you see? Any tips or recommendations? I didn't have much success with the immunologist. Thanks.

p8d, thank you. I won't go off my prescriptions without the doctor's approval. Yes a good cry is needed but as overwhelmed as I'm feeling I do have some hope with the new doctor. He really took an interest in my case and promised to do homework over the weekend. He wanted me to email him come Monday to see where his mind is. I have blood tests Tuesday and Wednesday this week and I'm hoping they give us some answers and a direction. That's all I really want is a plan. I know medication is necessary to treat the symptoms but when you are taking meds to counteract the symptoms that the meds are causing it starts to get ridiculous! I've been here before and I fought hard to get off meds and stay on the ones that I absolutely had to stay on. I see my med list growing longer and longer with each doctor's appointment. I don't want to end up back on 20+ meds per day again. I'm just going to keep my chin up and hope that I was sent to this new doc for a reason.

Wouldn't that be something! I'll keep praying!

Thanks Dancer. I guess Xeljanz scares me because it's so new. I know they do extensive testing before releasing these drugs to consumers, but I worry that being one of the first to take it will lead to problems 10 years from now. I'm really considering taking a break from the autoimmune meds, a vacation if you will, and maybe focus on the dysautonomica/possible MCAD issues for a bit before adding more scary drugs to the mix. I'm sure ultimately I will need to go back on something for the joint pain and inflammation but maybe my feelings of uneasiness are my body's way of saying it needs a break. I don't know. Thank you for the information though. It's great to know that people are getting good results with this drug. I do love my doctor and this is the drug he wants to try so the more information I can gather before making my decision the better.

Thank you. I've had many opinions. I think I'm in good care. It just seems like things keep getting worse and the answer is more meds by the meds are causing more problems. Just a vicious circle.