MikeO

Sorry i have to respond to this. Yes coughing along with heart pain and being short of breath and fatigue is a sign of heart issues. I am again being currently looked at for heart problems. While my echo was normal my Cardio team suspects other issues. One item that came up was some microvascular spasms in the heart muscle in which nitro tabs are not very effective in relieving symptoms. Side note i already have had bypass surgery but hindsight i should have been evaluated at a earlier time in my life. I am not a Doc but IMO do not mess with a suspected heart issue. POTS or not these are not a normal day in a otherwise healthy person.

I see a Cardiologist at a university hospital as well. Very thankful that i drew him as a provider. He has been really good with me and has the best nursing team that i have ever had the pleasure of working with.

Sorry to hear you are having a bit of a go with some of your healthcare providers. It's not uncommon for many of us Dysautonomia folks to pedal thru Doctors until we find one that we are comfortable with of helps with what bothers us. Personally i would not consider a neurologist unless you really think there is a need for one. I have read many folks experience has not gone well and is just one more trip down a empty rabbit hole. I would agree that seeing a electrophysiologist for an opinion would be a worthwhile effort seeing you have inappropriate sinus tachycardia. Unfortunately there is no magic one pill that fixes this for all. I was lucky in my search for a good Cardiologist (have fired a number of them over the years) that does recognize autonomic dysfunctions as being valid and has been very helpful. He will tell you outright from a cardiology perspective that heart rate in the mid 90's or just short of 100 is not killing you but does agree it can be bothersome especially if i feel symptoms like a bit of lightheadedness or in my case feeling the palpitations. We did change out my meds completely to help with the palpitations which did not include Corlanor. Currents meds are Cardivadiol, amlodipine and ranolazine and this works for me. My heart rate is elevated most of the time from mid 80's to 90's but the Doc is very conservative not to throw the kitchen sink at the rates as we know it will just cause me more issues. Either way for you it's not out of the question to trial other meds to see you one works better for you. Rumour is that Ivabradine is effective with controlling the heart rates.

I have read that some folks have had success with a lifting back brace style type binder. the ones thats have a narrower belly band and has the suspenders. personally i found the abdominal binders to be uncomfortable and abandoned them quickly. but then i did not put a big effort in trying a number of them to see if there was one i felt comfortable with. Good Luck! in your search.

I would be concerned if i had hearts rates like what is being reported. I can tell you that the beta blocker that i take will throttle my heart rate to just below the target stress test numbers (have three while on the blockers) so we know my meds works for me. Typically while i have not see HR's in the 60's in a number of years i do see 70's and 80's on a regular interval. Seeing that your are so active can i ask why you were prescribed midodrine and clonidine at the same time?

@mrfSorry to hear you are having unwanted health symptoms. By no means could i even answer if you have dysautonomia but a tilt table test is often done if POTS or OH is suspected or are having the classic symptoms of either of these. What got me my (3) tilt table tests was due to me passing out upon standing. Below is a link on the DINET website that covers some of the diagnostics for dysautonomia conditions. keep in mind there are not many clinics that perform these in the country outside of the TTT test. Hope this helps.

This is so true!!!

Well it helps i am being tested (again) for my thyroid function. Lost big time weight over a few months. can't say i have POTS but do have other unexplainable health issues like unknown root of my diabetes. Best i can say is keep after how you feel. Best, Mike

I had rash of this with my left knee locking up in a semi bent position especially while in bed. I can say if is painful. i have not experienced in the last year + thankfully. My PCP looked at it and did note some abnormal movement. had some x rays taken and did not show much to explain what was going on but the snapshots did show a calcified vein which took me down a whole nother path of problems.

Some of the clinic where i live want a baseline tryptase test and then one during or shortly after a MCAS flare up. i gave up on the idea of being tested just of of the difficulty of doing this. Some Docs will just treat based on symptom and see what they get, again passed of this as well. I know i am sensitive to some foods and med combos some i just adjust and go with what works for me. Can't say i have MSAS but i an sure sensitive when i start dumping histamine.

I did not list any disabilities when i applied with the employer i am working for. Even though they have a pretty decent HR and do hire folks that need accommodations but as you said people are people and may inadvertently discriminate (hiring dept manager). I did look for employment that i know i can do without issues which helps.

I don't remember the MFG brand of the drug coating but the term medical wise is called Drug-coated balloon (DCB) angioplasty

I had my left iLiac ballooned with a drug coating to help keep it open. had about a 60% blockage. Never had a venogram done just doppler Echo's and then straight to being cathed. also had a blockage in my left femoral vein (80%). I do feel better once the blood flow was restored.

Not sure what some of this dysautonomia or other verbiage especially (cvd) i do get (PVD) and yes it is a player in symptoms. sure it is the same thing. either way it does affect the body.

I am taking a PCSK9 inhibitor for my LDL cholesterol. I have had a hard go of controlling the LDL and total cholesterol portion of my lipid panel (despite the rest of the numbers looking good) even when taking high doses of statins and a secondary med. I never realized that my severe myalgia was induced by the two meds. I do question if i have a gene mutation that makes the PCSK9 inhibitor very effective. my last couple panels look like a 18 year olds.