seattle chris

Yes, was very sensitive to smells, light and to a lesser degree sound for a period of time.

I have actually had better sleep with the SSRIs. In fact, I am frequently drowsy in the afternoon. I have felt much better overall with Paxil so I will gladly take the side effects over the misery I went through before I started the med.

I started getting much better weeks after starting an SSRI (Paxil). I have even stopped taking Mididrone and Florinef without any issues. My quality of life has greatly improved over the last couple of months (although I still have some symptoms). I don't want to proclaim victory yet but I am hopefully optimistic that I will remain stable. I think the effects of each medication deviate materially from person to person and I have heard many state that they weren't helped by SSRIs. I also had fairly unpleasant symptoms the first few weeks of taking the medication.

In past tilt table tests, my blood pressure dropped after standing, recovered and then declined sharply. During the most recent test, my blood pressure and heart rate reacted normally even after an injection of adrenalin. I also had normal results in all the autonomic testing. I have taken my blood pressure at times when I felt faint and there doesn't appear to be any correlation (it was usually normal or high). I spent several hours with the neurologist team but don't remember the answer to your question if they gave it. I am becoming more educated about these conditions over time and would like to obtain more feedback when I meet with my local neurologist in a few weeks.

I have woken up with my head and/or jaw numb. It goes away once I am awake for a few seconds but it is a real eerie feeling. Mayo recently ruled out any neurological issues but didn't have an answer for this other than suspect it could be sleep apnea related (which I am diagnosed with).

I personally, question a lot of the drugs that POTS people are put on. Some of what is happening with us is a compensatory thing and necessary to correct things. It may be uncomfortable - but, it could be keeping us alive. Chris - Yes, drinking and being up all night - sort of goes by the wayside. Well, unless you are like me and have insomnia and stay up late - talking on this forum. LOL! Since you have the HyperPOTS DX - now you can look into EDS and MCAS. Lots of us with HPOTS - have these two other things too. Some sort of trilogy. Issie They actually said I don't have POTS as I don't have tachycardia but it sounds very similar. I looked up the symptoms of EDS and MCAS and it doesn't sound like I have most of them (at least not yet). I will bring it up to my local doc next time though.

Correct, I dropped Midodrine and Florinef and am now only taking Paxil (40mg).

My official diagnosis was hyperadrenergic orthostatic intolerance. I had elevated levels of norepinephrine in two tests. I had to wean off midodrine, florinef and a beta blocker the prior week and surprisingly did ok without them. In fact I lasted the full 55 minutes on the tilt table test without any issues. In my previous three tilt tests I never made it past 10 minutes and was in utter misery from start to finish. I was convinced I had some sort of neurological problem, but the tests ruled out any such disorders as well as nerve damage. I think the SSRI I started six weeks ago has really helped. They couldn't explain all of my symptoms, but I am hopefully optimistic that they have the proper diagnosis. In summary, they think I will gradually continue to improve and be able to lead a relatively normal life if I know my limitations (no more guys nights out drinking).

I just returned from a trip to Rochester Mayo. I had an outstanding experience and would recommend them. Every person probably has a different outcome, but I finally received a specific diagnosis and prognosis for my condition. I was skeptical that they were re-performing many tests that I had already gone through at least once, but now I understand why they require you to take the full spectrum of tests onsite. The facilities and process were pleasant and I can think of only one appointment where I had a frustrating wait time (out of 17 appointments). Good luck with your decision - I think a visit to Mayo or Vandy will be beneficial.

You could also call the Cleveland Clinic. They see a lot of challenging cases, frequently have appointments available on short notice (although there is usually a decent wait for their POTS expert) and I didn't need a referral. I did get pushback from my cardiologist office for a referral to Vanderbilt some time back (said specialists don't refer to other specialists) so I made an appointment with a general practitioner who gladly wrote a referral for me.

I went there a few times. Dr. Jaeger is very knowledgeable but it is a lengthy process to set up an appointment, followed by testing and results. The blood volume/hemodynamic test yielded some useful results. Likewise, send me a message if you have specific questions.

I started today with 20mg so no turning back. Has anyone been on both paxil and midodrine and if so how did it work for you? My doctor wants me to continue with 5mg midodrine and gradually increase the dose of paxil to 40mg.

Did anyone start with a 20mg dose (to be increased to 25mg after a week)? It appears that others initially took 10-12.5mg. I am somewhat concerned about side effects so was going to wait until the weekend to start. I just went through a bout where I was in a room with no circulation and suddenly had to run outside to catch my breath. Felt like I was just going to keel over and die. Just worked out an hour earlier without any major issues. Hopefully the med can help alleviate some of these unbearable symptoms.

Great to hear. Hopefully many others will have similar results.

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