Kris4444

TTT was normal. My biggest issues are that my gut doesn't work (severe colonic inertia) and I have heat/cold intolerance and exercise intolerance. I was a professional horse trainer. I was very fit and active. I had to let that part of my life go. Just walking today caused a massive flushing attack, headache, high bp and excessive sweating.

I don't know what I'm doing. All of this was decided at Mayo and then I was thrown back home and none of my docs at home even know about this stuff...do you think it's too soon to up my dosage? I've been on it almost a month now, just in the morning. I have high blood pressure to begin with. Today after cooling down from a walk I took my pressure and it was 138/102 hr of 128. This was after taking my morning dose of clonidine and a losartan. My rheumatologist is looking into things and I've made an appointment with my GP. I'm hoping someone will tell me what to do. I don't even have a true diagnosis at this point. Just "hyperadrenergic state". Whatever.

I am taking clonidine too. Tonight I started my second dose of .1. They eventually want me on .2 3x's a day. I'm on a 30 day medical leave so I figure i will try it but I know it makes me tired so it will be interesting.

Beautiful! It's nice to hear a spouse being so supportive. I am so happy for you both that things are looking up! Good luck with the half marathon!

My bp does increase. I need to look over the test results again to better understand. Seems like it goes in one ear and right out the other. Thank you for the response.

My Neuro at Mayo refers to my diagnosis as a "hyperadrenergic state" or hypersympatheic state, he uses them interchangably. On my summary the diagnosis code is for Pots. I called and spoke to someone in neuro about this and they said they use the code that best fits the symptoms for billing purposes but it doesn't necesarrily mean that is my diagnosis. I don't think there is a code for hyper pots? What are the criteria for hyper pots? I have the high NE and NME and high blood pressure. I passed my TTT. Thanks.

oh yeah forgot about thyroid. Hypothyroid

Thanks yogini. He is a nice man and I could tell he was as frustrated as I was. He was really hoping Mayo would come up with something concrete. So was I. At this point all I have from them is "hyperadrenergic state" *** does that even mean? Is it a hyper pots diagnosis? I guess not. He does want me to go somewhere else and stressed that he feels there IS something wrong he just doesn't think it's within his field. He thinks it's autoimmune in nature. I am just frustrated and confused. I contacted my two rheumatologists, one at Johns Hopkins and my one here at home at Northwestern and threw the ball back into their court. If they can't figure it out then I just give up.

EBV titers 2,850 ANA slightly elevated nucleolar pattern Low cortisol High NE and NME Anemia after severe bout of microscopic colitis Accute kidney failure after MRI dye High C-reactive protein A bunch of others that go up and down and make no sense to me what-so-ever!

I am totally confused. I am on an SNRI for slow motility colon issues. I had the flushing symptoms before starting it but the sweating and vertigo came in after I believe. I have high NE 656/1199 but none of the doctors can tell me if it's from the SNRI or not. I had a waste of time appointment today at my endo. I honestly don't know what to think or do at this point.

Hmm.

Zap - thank you. I am just getting started I guess. I think I'm not seeing the right doctors. All of my problems started out rheumatological. These flushing issues and others have manifested over the past couple of years. The gut issues are huge and I have too wonder if it's all related. Im fed up.

Katy, So sorry you still aren't feeling well. I'm lucky that I have a rheumy who really wants to help. Looneymom, I'm sorry about your son. Thanks for the tip on the hemotologist. I'll let my rhemy know. Maybe he can set something up

They did them at Mayo. Only the normetinephrine was high. .90 is the limit. Mine was. 1.0.

Hi Karen, Welcome. I am new here too. I am sorry for all you are going through. I think you will find a lot of help here on this forum, I know I have. Could you please tell me how you got your diagnosis for mast cell? My doctors don't seem to know where to send me, what type of doctor would do the testing for this? My endo said an oncologist or hemotologists. Who did you go to? Thanks, Kris

I thought he would at least test for Pheo considering my NE levels were 656/1199 but he said Mayo wasn't impressed and he didn't feel they were high enough to test for a tumor. I asked him what he thought was going on and he said he didn't know but it wasn't something hormonal so he can't help me. He suggested I stick it out with my rheumy and let him look into a possible EDS diagnosis. He said I would need to see an oncologist or hemotologist for MCAS. I was in tears. This seemed to frustrate him. He is a very kind man and wants to help me but I was upset that he thought nothing of the high NE levels! I told him about the strange vibrating feeling waking me up at night, he said that it's not adrenaline or the high NE levels...so what is it? He doesn't know. I asked him is this all in my head? He said again, Idk. He suggested that maybe I go to Cleveland Clinic. LOL. Does he not realize that I am not made of money? I took a 30 day medical leave and we are pinching pennies as it is. I've been to Johns Hopkins to confirm the Scleroderma diagnosis which was changed to UCTD, now Mayo where all they found other than my Raynaud's was the high NE and that they can make me flush very easily. I don't even have a diagnosis from Mayo, they are saying I have a "hyperadrenergic state" yet the diagnosis code is POTS. Hyper POTS I asked the endo? IDK was his answer. I am BEYOND FRUSTRATED!!!!!!

Emma, Any idea why it went away?

Kitt , Has it happened to you since stopping the clonidine?

I see my endo tomorrow and plan to discuss this and my high NE levels. I will share any info that may be helpful.

My hands swell and get blotchy. I flush very red, my heart races sometimes (I noticed this while laying out trying to get some sun which I probably shouldn't have been doing due to autoimmune issues). If I exercise I will have vertigo when i stop exercising an it will take me about 3 hours to stop sweating. After showers my legs and arms will itch horribly. I can't take a hot shower or bath. I am also intolerant of cold and have Raynaud's. I have cold urticaria and will break out in hives the day after I get cold. Weird. I need to live in a bubble, unless it's 75 and sunny with a slight breeze I'm miserable.

Wow I had no idea I would get such a big response! I have not been officially diagnosed with hyper pots yet even though my NE levels are way up there. Do you think this is related to potsy type symptoms then?

Rachel I'm not sure if it's my heart pounding or what it is. AAP so you were physically shaking? I couldn't tell if I was or not. It felt like it but I'm not sure. It happened last night when my husband came to bed but on a much smaller level. Maybe he startled me when he came to bed. Idk.

Thanks. I'm sure there are underlying fears for him. Communication is so important. We are both type A personalities and still trying to figure out how that is going to work lol (we have only been married a year). I appreciate all of the replies. It's nice to have a place to vent and people who really do get it.

Well good he wasnt alarmed. I haven't mentioned it to anyone. I don't see a cardiologist regularly. All of this is very new. I was seen at Mayo in January. Still trying to sort things out.

I forgot to answer you about sleep. Im exhausted when I go to bed and normally fall asleep well but I wake often and toss and turn a lot. I wake up tired. Sleep is my #1 priority on my medical leave.