Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> Non Mast Cell Disorders, such as Ehlers-Danlos, POTS, MCS-CF, etc. >> POT/MCAS People http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1355777754 Message started by Futurehope on 12/17/12 at 08:55:53

Title: POT/MCAS People
Post by Futurehope on 12/17/12 at 08:55:53

It appears to me, from viewing my symptoms, that standing and sitting are causing mast cell degranulation. Sitting and standing, among other things, is a problem for me.

Is it possible that there is a subset of MCAS patients that have a problem with sitting or standing? Or, does the sitting/standing/POTS problem have another cause besides mast cell degranulation?

I am not understanding why the sitting and standing problem is related to MCAS or how that is so?! Thanks.

Title: Re: POT/MCAS People
Post by Anaphylaxing on 12/17/12 at 09:34:33

Both are an issue for me

Have always attributed it to venous pooling in my lower extremities aggravating hypovolemia. If I keep moving I'm ok. So often do the step touch dance when standing, calf raises.

Get up and walk when sitting and bought a little floor peddler to keep my feet moving.

Also I need to stay hydrated.

Title: Re: POT/MCAS People
Post by MGC on 12/17/12 at 09:58:38

Futurehope, those of us with H. POTS and a Mast Cell Disorder generally have high levels of Norepinephrine. When Norepinephrine (NE) is released, Neuropeptide Y (NPY) is co-released. Both NE and NPY can cause Mast cell degranulation, although NPY seems the more potent of the two.

Hope this helps. It takes awhile.

Gail

Title: Re: POT/MCAS People
Post by Futurehope on 12/17/12 at 11:04:43

MGC wrote on 12/17/12 at 09:58:38:

So, is the high level of NE the cause of the mast cell degranulation, or the result? I'm confused?!

And.....us POTSies have two different malfunctions going on, the increased NE because of ???, and also MCAS?

Title: Re: POT/MCAS People
Post by MGC on 12/17/12 at 14:53:03

You are asking the BIG question on cause and effect, and I don't think that has been answered at this point. Dr Afrin believes all is due to Mast Cells. Vanderbilt "proposes" a Mast Cell Disease masquerading as H POTS. The question in my mind is this: Do all with MCD also have high NE levels? Or are we a subset? Dr Afrin is testing for NE, and hopefully, he will release a paper before too long.

There is some indication that Histamine 3 receptors are involved in controlling NE, but research on H3 is not very far along.

And yes, NE has some adverse consequences just as MCs do.

Gail

Title: Re: POT/MCAS People
Post by brethor on 12/19/12 at 03:35:47

I am a potsy too :) and yes I have the same issues when sitting and standing.....if I could somehow stay in perpetual motion things would be better ;) I also have very high levels of adrenaline.....not sure how it all co-relates though :P

Bren

Title: Re: POT/MCAS People
Post by Futurehope on 12/19/12 at 09:39:33

MGC wrote on 12/17/12 at 14:53:03:

The question in my mind is this: Do all with MCD also have high NE levels? Or are we a subset? Dr Afrin is testing for NE, and hopefully, he will release a paper before too long.

To add to the confusion, when NIH tested me for POTS, it is obvious that my NE levels were increased after standing, as if the standing had something to do with it?! But, maybe the increased NE caused the standing problems instead of being the result of standing?

I am so confused. Do I have POTS, or do I have MCAS, or do I have both? Is the MCAS in any way tied in with POTS? I remember my POTS doctor saying that many POTS patients are "sensitive" to drugs and changes in drugs, so maybe many POTS people have the characteristics of an MCAS patient? But why? This is so confusing. :-/

Title: Re: POT/MCAS People
Post by frugalmama on 12/21/12 at 21:03:26

This is an interesting topic! When we first were tracking down what was wrong with me, we were 100% sure I had POTS. Within 3-5 minutes of standing, my HR was 130+...every time. Except, when I had TTTs done, I didn't react at all. My HR jumped up maybe 10 bpm, but no crazy systemic symptoms like I normally has when my HR jumped. After this happened the third time, I started going through what could have possible been different during the tests, and realized that the tests were done in scent-free environments that were dark and had no sounds, motion, etc., the rooms were freezing, I had to fast, and I wasn't truly bearing all my weight during the test.. A year later, I now know that my main triggers are foods, heat, scents, exertion, and busy-ness around me. So, I actually think that I don't truly have POTS, but rather the physical stress of standing is causing mast cell degranulation and anaphylaxis when combined with any other trigger. I'm hopeful that I'll be able to get the masto symptoms under control eventually, and then I'll be intrigued to see if I'm able to stand for longer periods of time, too :)

Title: Re: POT/MCAS People
Post by Anaphylaxing on 12/21/12 at 23:26:49

It's a good question but don't think it changes too much treatment wise as the scientists don't have it all figured out. Personally, I say I have POTS and MCAS. They don't always flare at the same time and seem to sometimes need different things, but they both feed off each other.

I agree with the proposed theory that they are inter-related, but time and science will hopefully tell

Title: Re: POT/MCAS People
Post by Futurehope on 12/22/12 at 04:59:03

frugalmama wrote on 12/21/12 at 21:03:26:

A year later, I now know that my main triggers are foods, heat, scents, exertion, and busy-ness around me.

I can really relate to this. I always thought I was weird because of my reactions to the above. Add to the above, loud noise. I do not do well with loud noise.

Title: Re: POT/MCAS People
Post by Futurehope on 12/22/12 at 05:01:42

Anaphylaxing wrote on 12/21/12 at 23:26:49:

Ana, it is so confirming to know that other people are going through similar problems, not that I want anyone else to have the difficulties that I have. I, too, believe I have POTS and MCAS. How they are related, I have no idea, but in me they are somehow related.

Title: Re: POT/MCAS People
Post by Anaphylaxing on 12/22/12 at 20:21:23

Me too future hope I agree.

I also have issues with all the triggers above. I've never liked places like bars etc my whole life but now I'm all about serene, uncrowded environments even moreso because it keeps my issues at bay

Hope you have a good Christmas

Title: Re: POT/MCAS People
Post by Futurehope on 12/23/12 at 01:41:14

Anaphylaxing wrote on 12/22/12 at 20:21:23:

Hope you have a good Christmas

You too. :)

Title: Re: POT/MCAS People
Post by brethor on 12/23/12 at 05:06:41

yes me too :) I have been diagnosed with POTS/Dysautonomia. MCAS and EDS.....my specialist says they are co-morbid but doesn't necessarily think one causes the other just that they don't help each other ;)

Merry Christmas All :)

Bren

Title: Re: POT/MCAS People
Post by lynda51 on 12/23/12 at 18:54:34

I thank all of you who posted above. I have MCAS and although I do not have an official POTS diagnosis, Dr. Greenberger did the "free stand test" and I had an increase of 40 bpm in just under 3 minutes. I was diagnosed with mitral valve prolapse/dysautonomia in 2010. I have yet to get the autonomic testing done.

I feel really bad that many of you suffer from getting symptoms from sitting as well as standing. I thought I was the only one! For me, I get the same symptoms but just not as rapid as if I were standing. Thank you for sharing!!

My first ambulance trip when all this started was after I was sitting at a sports event for over two hours...my second trip was sitting in a car for over 2 hours.... both times my BP was around 240/150. Interesting, isn't it??

When I had an appt. with Dr. Afrin I asked him if there was a connection between the two syndromes. He said there is a definite connection but they are not sure what causes what and why. He feels that if you get the mast cell disorder under control, the POTS will eventually be controlled as well.

I just got back from Boston two days ago from an appointment with Dr. Castells (a referral from Dr. G because of the possibility of the POTS). I asked her if she thought the two were connected. She said, "Histamine release causes the POTS symptoms". (Although she also stated that there are patients that do NOT have elevated histimine levels and still have POTS!!....about 20 % do not vs. 80% that do). Don't quote me on that as I have nasty memory issues and lots of brain fog!! I do know there has been a study done and there is an article stating the findings.

I think you are right on Ana.....they don't really know YET. I am actually very relieved that they believe there is a connection. For me anyway, I feel like I have given up every trigger I know that can cause mast cell symptoms, yet I still have trouble keeping the POTS symptoms under control. I kept feeling like it was something I was doing wrong. I am now learning to distinguish between the autonomic "reactions" and the mast cell reactions....and when I keep my MCAS under control (as much as we can keep it under control that is) then my POTS gets better with time.

As Ana stated, hydration is HUGE! Any time we become dehydrated we put ourselves in grave danger! I think that hydration and exercising as much as our MCAS allows us to is critical.

Bren, I find it very interesting that you have high epinephrine levels. Mine have been consistently high for over a year. Sometimes it gets over the 600 range (normal 0-110). Dr. Afrin thinks it could be "just another variant" of mast cell disease. What has your Doc said about your levels? How is your Norepi and dopamine levels?

Good question Futurehope, how is it that sitting and standing cause us to degranulate? Maybe it's just that our blood pools and then we get tacky and then our body is physically stressed. And we know what happens when we get physically stressed!! Big time degranulation. You are right, it is all so confusing!!

I too have trouble with places that are loud and also places that have what I would call too much stimulation ...like music AND lights flashing AND people talking, etc. I thought I was having seizures at first, but after reading info about POTS, I think it's the autonomic "stuff" that kicks in. I respond by getting the "visual symptoms". They scare me the most.....tunnel vision, "black hole" vision in combo with blurry vision. I now know to close my eyes, lower my head and breathe deeply. Hummmmmm the things we learn to do to keep ourselves safe (and sane, right?)

Gail...I need to look into the NPY. My nor-epi levels are always normal but I have never had them done standing. Interesting?? I would like to know more about that. Don't most people with MCAS have elevated nor-epi levels?

Thanks for all the great information!

Merry Chirstmas to all!! Take care.....stay well. Hugs, Lynda

Title: Re: POT/MCAS People
Post by Futurehope on 12/24/12 at 03:09:51

Lynda,

Your post did much to validate my everyday experience and I thank you for that.

Also, any of the info you have shared is appreciated by all of us with POTS and MCAS.

In the future, if any of us POTS, MCAS people learn anything from our respective doctors about any of this, it would be nice to share the info if possible.

I realize we are not doctors and may not be sharing things totally accurately, but maybe eventually there will be articles written when more is learned.

Thanks so much for sharing. Have a happy holiday!

Title: Re: POT/MCAS People
Post by MarciaB on 12/24/12 at 03:24:57

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

Title: Re: POT/MCAS People
Post by MGC on 12/24/12 at 06:36:33

[i]Gail...I need to look into the NPY. My nor-epi levels are always normal but I have never had them done standing. Interesting?? I would like to know more about that. Don't most people with MCAS have elevated nor-epi levels?[/i]

Lynda... Vandy's method of checking NE is to have the person lie down while they insert a line. They then take blood. Then the person must stand in place for 10 minutes if possible, and blood is taken again. We may well have normal NE when lying/sitting. Standing is when the numbers climb.

I am one of those that have normal Histamine levels.... another reason I question how these problems are connected. It may be that NE is our primary trigger rather than Histamine????

BTW... I was diagnosed with MVP/Dysautonomia many years ago.

Ana.. respectfully...I believe a diagnosis of H POTS can make a difference in treatment. Clonidine and Methyldopa are used to reduce Sympathetic output, which should in turn reduce symptoms, according to the Vandy's concept of how these two, POTS and MCAS, are connected.

If any of you have not read the Vandy paper about the connection, here is a link: http://hyper.ahajournals.org/content/45/3/385.full

Merry Christmas to you all. Gail

Title: Re: POT/MCAS People
Post by PepperPOTS on 12/25/12 at 06:19:43

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.

Title: Re: POT/MCAS People
Post by Futurehope on 12/25/12 at 10:28:04

Dr. Afrin told me about the multisystem polymorbidity as well.

Up until now, none of the POTS ideas worked for me except compression hose.

Since I had already evolved into taking H1 and H2 blockers along with a leukotriene inhibiter, I have not noticed any improvement recently.

I'm a bit discouraged because since beginning an exercise program (10 months ago), I am able to exercise but it has not improved my OI symptoms. As a matter of fact, I'm a bit worse in the overall everyday stamina area than before beginning my exercise regimen. This may or may not have something to do with my thyroid. Time will tell. Long story there. Then again, it may have something to do with degranulating mast cells. But on that subject, I notice that my reaction to exercising decreased the more frequently I did it.

Anyhow, I am not pleased with my lack of progress with my health. And that is not even mentioning that I have progressed with my hair loss to the point of purchasing a wig, since my hair looks like a pathetic set of fine strings.

If and when I notice any improvement from anything, I will post on this forum.

Title: Re: POT/MCAS People
Post by PepperPOTS on 12/25/12 at 13:10:15

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.

Title: Re: POT/MCAS People
Post by Futurehope on 12/25/12 at 14:58:58

PepperPOTS wrote on 12/25/12 at 13:10:15:

I needed that today. Thanks.

And no, Dr. Afrin did not mention the 90% vs. 10% figure to me, though he did say it will take time.

Anyhow, with so many unknowns, I hope I am not hurting myself with exercise. The reason I did not see a tremendous improvement after beginning an official regimen is because I had already been doing something, and walking a bit, so the improvement was not readily visible.....like it would be if I had progressed from wheelchair to standing.

But, I will continue what I can as I have built up to what I do over 10 months. Like I said, I hope I am not hurting myself or overly stressing the mitochondria in my cells?

I'll be seeing my heart doctor soon for my yearly visit and I will bring up what was said on this thread about congestive heart failure, especially in light of the fact that my pulse pressure can become narrow at times, and I have had a blood test showing some decreased blood volume. I'll post if I learn anything. Please do the same if you are able. Anything I can learn to help me understand what to expect. Thanks.

Title: Re: POT/MCAS People
Post by frugalmama on 12/25/12 at 19:41:40

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 :)

Title: Re: POT/MCAS People
Post by Futurehope on 12/26/12 at 05:59:46

You and me both. I guess I'm going to have to practice being patient.

Title: Re: POT/MCAS People
Post by DeborahW, Founder on 12/30/12 at 06:45:16

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

Title: Re: POT/MCAS People
Post by aimee8772 on 09/22/13 at 08:21:19

I am anxious to follow this thread and see if there are more of us who surface with POTS and MCAS and what you all find most helpful.

I was diagnosed at Vanderbilt in 2011 with POTS and was told I had a high tryptase level that should be further investigated because there was a link to MCAS in some. I followed up at Mayo Rochester in 2012 as I was severely affected by POTS symptoms and not finding much relief with the typical POTS med list. They confirmed my POTS diagnosis but didn't seem to think much of the elevated tryptase and just tweeked my meds a bit more to little effect.

In May of 2013 I pursued and appointment with Dr. Afrin in SC to discuss the MCAS possibility as I was getting worse, not better with my POTS treatment. He officially diagnosed MCAS and I began working through his recommended med list and am seeing improvement not only in my MCAS symptoms which are severe but also in my heart rate as well, it is much more stable. Still high but not as crazy high as it was before.

I did not have high NE levels when tested on two separate occasions. So I do not fit the typical hyper pots/mcas pattern.

I am also still taking the beta blocker that I have been on since the POTS symptoms began and am wondering if at this point it is underlying some of my issues and hurting me more than helping. I am however, afraid to mess with the beta blocker just yet. My plan is to try and stabilize a little more and then slowly cut back on the beta blockers to see if I am able to be without them and if so if I see any improvement
in POTS and or MCAS.

Do any of you know if there are other recommended POTS treatments besides beta blockers that have helped that don't mess so much with MCAS? I salt load, drink tons of water and have tried Florinef which was a complete fail as my BP went through the roof. I was also on IV fluids for a few months and that did seem to help some but obviously not a long term solution. Clonidine was a no go for me as well. I am currently on 15 mg of Inderal 4x per day. Curious to know if anyone else has had benefits from any other POTS meds that played nice with MCAS.

Title: Re: POT/MCAS People
Post by Anaphylaxing on 09/23/13 at 01:33:50

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.

Title: Re: POT/MCAS People
Post by aimee8772 on 09/23/13 at 12:14:23

That is interesting about your low potassium - I have been on supplements for the last two years, unable to keep my levels up without them. I never could figure out why - perhaps it is all the water I drink daily?

I am encouraged to hear that you have seen improvement in your POTS symptoms after learning which triggers to avoid and also with exercise. I was an avid runner before my health bottomed out and would really love to get back to that sometime in the future. Currently I can only manage 20 minutes on the recumbent bike but it's a start. Exercise is a trigger for me so I have to be careful not to overdo it or exercise on a day when I am having MCAS issues.

Some of my triggers I can figure out - other times I have zero idea what sets me off - I suppose it's just a really big learning curve! Thanks again for your response.

Title: Re: POT/MCAS People
Post by Anaphylaxing on 09/24/13 at 16:31:15

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!