Sorry I haven't had time to read this whole thread.

Are you all familiar with dr peckerman's explanation on oi / hypoperfusion ?  If you google cfs peckerman you should find it.

Basically, he says that if you have oi / blood circulation impairment when you're upright all of your upper organs will be in a state of organ failure from blood loss. Yes organ failure.

This means your brain, heart, lungs, kidneys, digestive tract, spleen adrenals, etc are working the best they can to keep you alive. But somethings gotta give because without blood the nutrients can't get to these organs and toxins can't be removed.

For me this completely explains what's happening in my body when I'm upright. When I lay down after I've been up for even an hour, I feel my brain, heart, lungs and digestive tract begin to relax.

It takes me an hour to stabilize. I used my bp/hr monitor to verify that my hr won't normalize until I've been down an hour. My hr drops another 10 pts down to 64 - 67 in the last 15 minutes. This is my resting hr.

I don't know why our autonomic specialists don't explain it this way.
Dr peckerman's info has been around for at least 5 years.

My oi has responded to taking 25 - 40 mg zyrtec spread throughout the day. I'm working on getting consistent relief by experimenting with other mast cell meds.

Tc .. Marcia

Happy holidays, everyone!

Just thought I'd chime in. I was initially diagnosed with POTS via a tilt table test (TTT) two and a half years ago when my symptoms became debilitating. Symptoms continued to worsen over several months, so I went for a week's worth of testing at Mayo Clinic - Rochester. There, I was diagnosed with hyperadrenergic POTS (my standing norepinephrine was close to 1000), neuropathy, hypervigilant state (hahaha...that one was because sounds and movement triggered sx). Since then, I've been diagnosed with many environmental allergies and migraine.

I tried all the recommended treatments for H POTS and none helped, except mild-moderate exercise (strenuous exercise exacerbated symptoms). Some meds (beta blockers) made me worse. Over time, I also became more aware that quite a few of my symptoms (e.g., itchy rash, throat swelling, sound sensitivity) did not fit with POTS and it was clear to me that something other than hypervigilance was making me symptomatic.

Last summer, I saw Dr Afrin and was diagnosed with MCAS. He seemed to believe that my POTS symptoms (as well as all my other sx) are a result of mast cell degranulation. There are over 200 mast cell mediators that can be released from mast cells, with histamine being one of them. There are plenty of mediators that can cause autonomic nervous system problems associated with POTS.

Like many other POTSies, I experience increased symptoms sitting and especially when standing. Those are but two of the multitude of triggers I have identified so far. After viewing my POTS symptoms through the lens of MCAS, I have come to see them as MCAS symptoms, themselves.

Here's why I think my POTS symptoms are part of my MCAS - 1) The many, many POTS meds and behavioral changes I tried didn't work. 2) Beta blockers made me worse. They are known MC degranulators. 3) Strenuous exercise - another MC degranulator - increased my sx. 4) H1 and H2 blockers have helped with many of my POTS sx, including blood pooling in my legs. I was able to stop wearing compression hose after starting antihistamines! 5) Gastrocrom is beginning to help with some of my POTS sx.

In the report from my visit, Dr Afrin explained that it is extremely unlikely that I would be so special as to have multisystem polymorbidity and various causes to explain them. In other words, what are the chances that I have POTS, migraine, neuropathy, allergies to nearly everything in the world, etc? It is much more likely that I have one problem happening that is causing these symptoms across systems in my body. It sure was nice to have someone tell me I'm not special!

So, in my case, at least, the evidence is there to support MCAS as my diagnosis - and all my other diagnoses (POTS, migraine, neuropathy, "allergies") as symptoms of MCAS.

Futurehope, hang in there. Finding a MC treatment that works for you can take time. I bet you already heard this from Dr Afrin, but of the approximately 300 MC patients he has treated all but 10% have had significant improvement in sx. And, that 10% that hasn't yet improved are still trialing meds that could help.

When I get down, I think of those stats and remind myself that it is very likely that I will eventually have improved functioning - and probably in three years or less!  

Also, what you're describing with the exercise is what I experienced and what I've read from others. I found that starting low and going slow is the way to go. Also, for me, while exercise did help with some symptoms (I was in a wheelchair due to presyncope and severe fatigue pre-exercise. Those both improved enough to get out of the WC.), it sure didn't with others and seemed to make some sx worse, too.

Hang in there and remember that with the MCAS dx, there are quite a few meds to try and it is likely that one or, more likely, a combination of meds will help you a lot.

I forgot to mention that I also went through typical POTS treatments, and nothing made even a small difference.  At the time, I couldn't figure out why compression hose made me violently ill every time I used it - I now know that pressure is a major trigger for me . I also tried all the typical POTS meds, to no avail.  

It's amazing that Dr. Afrin sees such success!  The doctor that I see is a bit perplexed that I haven't seen more of a difference (I am only able to leave the house 1-2 times a week for short periods, and always come back in the throes of an episode since my list of triggers is really, really long).  I think she's a bit stumped about what to do next, as I'm on the highest dosage of all the "typical" meds.  I'll have to do some more digging to see what Dr. Afrin recommends, as I'd love to be able to look forward to a significant improvement

This Topic was moved here from General Mast Cell Disorder Discussion by DeborahW, Founder.

For me the non-medical interventions were most key at first. Figuring out MCAS triggers was the biggest thing as to prevent reactions and not flare the POTS. When I could barely stand, I had to eat tiny frequent meals and sometimes skip breakfast as my POTS seemed to routinely flare after it.

I find I needed to drink lots, but when I was bad, I was just voiding it all straight out with an abnormally high daily urine output which was also driving down my potassium. Not sure if that happens to you.

I did an elimination/rotation diet of simple organic foods to try to stop my system triggering. When I couldn't stand I put ankle weights on in bed to try to get excercise and keep my body moving. As soon as I could walk, I paced the hospital halls as long as I could stay awake trying to get my body to adapt.

Standing up slowly, changing positions slowly, and progressing with exercise little by little. Got a foot pedal bike when I was able to sit in a chair. I also removed scents and chemicals from my house as I realized they were triggering me.

Beta blockers made me worse. I reacted to Florinef also. I am on the MCAS meds but experimenting to see which ones help and which don't.

But 1.5 years later after daily battles, I am running 10 km 3 times a week, hiking, yoga, aerobics, weights. Can't believe it.

OH and sleep and stress management were so key for me. In the hospital they keep you up all night with tests and when I got home and let myself sleep I found my healing quickened.

Even now though, if I take a few days off exercise then get back to it, I get POTSy, or if I don't drink enough water. But NOTHING like it was.

I'm sure time had a healing hand in my recovery too.

Keep us posted.

Good for you for doing the bike!

Yes exercise really triggers me too. It takes so much listening to your body and trying to control the variables to figure out where the problems are; I'm still learning on that one.

At first my throat would swell if I walked up a hill. Now after ten km my skin is a bit more red but then for the rest of the day I'm a bit less reactive, or maybe that's because I'm less stressed

yes for so long I stared at runners longingly thinking I would never do it again. I used to run a lot too; though not well! But to be able to do it again has been amazing. I still need to hold off if I'm sick or having a really bad day but overall the trend has been huge gains

Yes my potassium is so finicky. I randomly hypothesize that the low blood volumes and degranulating caused by constant low level reactions makes us void out our potassium. I was on supplements for ages, but then stopped as I wanted to limit everything possible and they had dyes in them and to be honest I couldn't tell that they made me feel any better.

Don't give up!