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.

"My official diagnosis was hyperadrenergic orthostatic intolerance. I had elevated levels of norepinephrine in two tests." This DX confuses me then. You have high NE levels and orthostatic intolerance ---but, you don't have an increase in your heart rate with standing. So why do they think this is? Does your blood pressure stay the same, drop, or go up with standing?

Issie

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 do feel like sometimes some of the meds that i take make me feel much worse. Also, many of the drugs that i have been on gave such horible side effects, that i developed realy bad anxiety. I am so scared of taking anything and feel like i should drop all of them.

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.

Hi Chris. So you not taking any of those drugs now, just the ssri. May I ask which one? I was told zoloft helps a lot of patients.

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

Okay, so what is your DX?

Mayo is a well oiled/run machine of a place. Pretty amazing. Most have had good experiences here in AZ as well.

Issie

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.

I use them all the time. They are portable and great for traveling. Check out Super Supplements if you buy some as they have deep discounts on certain flavors.

I got super short of breath last time I swam and stopped after 1 1/2 laps. It is unfortunate given that swimming is recommended as a good activity for people with dysautonomia related conditions.

Sorry to hear about your issues. My symptoms have put in question my career prospects as well. Good luck with the United opportunity - I worked there for 6.5 years

Regarding your inquiry about the QSART and hemodynamic test:

I took the QSART test a few months ago. You feel some prickly sensations but it wasn't bad at all. My results were normal, but a doctor recommended that I retake due to the fact that I took aspirin beforehand (which they indicate can skew the results).

I recently took the blood volume and hemodynamic test at the Cleveland Clinic. The test took about two hours and was also fairly easy - they inject you with dye and draw blood at certain intervals. The blood volume test indicated that my blood volume was 25% greater than predicted, likely due to the florinef that I take. They recommended that I subsequently cut the dose in half (and eliminate my afternoon dose of midodrine), given that I had recently dealt with episodes of high blood pressure. The test also indicated that I was very slightly anemic so I started taking a daily iron supplement. The hemodynamic test indicated that my heart was functioning properly.

My 24 hour urine test showed an output of 9.2L but all my blood work has indicated normal electrolyte levels. Per doctor's recommendation, I have cut back to 3-5L per day, with 80% of the liquids being more than water (Nuun, Vitamin Water, Propel, etc.). I feel like I would be dehydrated at only 2L. I once ended up in the ER for hyponatremia after I ran a marathon as my sodium levels were severely diminished (even though I only drank Gatorade), so I guess you do need to be careful with liquid consumption levels.

I have been taking beta blockers for a couple of decades and my normal resting heart rate is typically in the lower 40s (from the beta blocker and being involved in endurance sports). I never had any issues with this until my dysautonomia issues started last year. The low heart rate ins't likely the cause of my problems as my symptoms persisted even while I was off the beta blockers for several days.

The lower atmospheric pressure likely causes symptoms to be worse. I would ensure you stay hydrated and take it easy on the physical activities. As others have stated, compression stockings or abdominal binders may help. I take midodrine before taking a flight (where the pressurization is 6,000 to 8,000 feet) so it is in effect the majority of the flight (but you can't take this med at night). There have been some past posts on this topic so it may be worth a search.

I also had miserable symptoms last fall at high altitudes in the Sierras. Fortunately I improved immediately upon descent to sea level.

I had blurry vision a couple of weeks ago but it only lasted for ten minutes or so. Since then, I have had a few instances where it seems like my eyes are blurry but I don't have any visual impairment - it is difficult to explain like so many of these symptoms. I also wondered whether there is some kind of brain signal issue rather than a problem with my eyes.

I tried .05mg, 1mg and .05mg each successive day per the doctor's recommendation. Not sure of the rationale for decreasing, increasing and decreasing again. I felt miserable for a few days but stuck with it.

Excellent! Good resource incorporating symptoms, potential causes and current treatments among other things.

I have had a similar feeling, in my head only not neck.