Flushing And Accompanying Symptoms While Talking

[janiedelite]

I had my first POTS-related tachy episode 10/06 and my symptoms have slowly worsened since then. One of my most disabling problems is that talking brings on these symptoms that seem to be a byproduct of too much adrenaline:

- Flushing from the chest up. Even my eyes get pink, blood shot and feel gritty and sore. My skin gets so pinkish red and feels hot to the touch.

- Within a couple hours after a flush, I get red, burning, itchy bumps on my neck, face, ears, etc. that I think are a heat rash.

- This flushing occurs during any conversation but the more I talk, the worse it gets.

- Laying down while talking only helps slightly.

- BP rises substantially while talking, even when lying down (this was demonstrated during my TTT at Mayo), even when not talking about a stressful topic.

- Other symptoms that accompany a flush are chest pain, head ache, scattered thoughts, burning mouth, fatigue, and a feeling of doom.

I had a really bad flushing episode 2 days ago at the dr's and it feels like the flush and its accompanying symptoms have never gone fully away. My face has a consistently ruddy appearance. I know my body produces too much norepinephrine, which in itself can create feelings of anxiety and doom. It's just that I've watched my mom deteriorate from carcinoid syndrome for 20 years and so many of my symptoms mimic hers. (I've been fully tested and my symptoms aren't from carcinoid as of yet.) Wierd, though, huh?

Benadryl helps with the burning pain in my face and mouth a bit, and if I take a 1/2 of a vicodin I don't notice the chest pain and headache so much. I've also been tested for pheochromocytoma and don't have that. It just takes days or weeks to recover, and I'm never quite sure when a flush will be severe like this. Then I have an episode like this and feel even sicker for days or weeks, during which time I'm more susceptable to recurrences.

Who can relate???

What can I do besides resorting to sign language in order to avoid talking and triggering these episodes???

No doctor knows what to do with me... Should I consider going back to Mayo where I've already been? (They said I might have MCAD even though urine methylhistamine was normal. Standing norepi was high. I have small fiber neuropathy. They want me to try mestinon but we've been trying to conceive; but no luck after 8 months, so maybe I should just go on the mestinon.)

Would mestinon help with flushing?

Heat seems to trigger these episodes, or at least make them worse, by the way.

[juliegee]

So sorry you are dealing with all of this. I agree with your docs- it still could be MCAD. I notice you have GERD. Are you taking anything for that? I would suggest adding ranitidine (zantac) to your regimen. it is an H-2 blocker and combining it with H-1's (like zyrtec and benadryl) seem to calm MCAD symptoms down. Have you tried a nebulizer or inhaler for your chest pain? I went through many before I found atrovent, which provides some relief. I also take a daily singulair which is VERY helpful with chest pain. I can often knock the pain out within 15 mins. of taking it.

If these measure prove helpful, it would help firm up a MCAD DX. Many masto docs use the patients reactions to these drugs as an important part of the diagnostic work-up. Take careful notes of how each new med makes you feel.

I've been as "punk" as you in the past. It really will pass with targeted treatment. I'm keeping you in my prayers. Please, let us know how you are doing.

Julie

[janiedelite]

So sorry you are dealing with all of this. I agree with your docs- it still could be MCAD. I notice you have GERD. Are you taking anything for that? I would suggest adding ranitidine (zantac) to your regimen. it is an H-2 blocker and combining it with H-1's (like zyrtec and benadryl) seem to calm MCAD symptoms down. Have you tried a nebulizer or inhaler for your chest pain? I went through many before I found atrovent, which provides some relief. I also take a daily singulair which is VERY helpful with chest pain. I can often knock the pain out within 15 mins. of taking it.

If these measure prove helpful, it would help firm up a MCAD DX. Many masto docs use the patients reactions to these drugs as an important part of the diagnostic work-up. Take careful notes of how each new med makes you feel.

I've been as "punk" as you in the past. It really will pass with targeted treatment. I'm keeping you in my prayers. Please, let us know how you are doing.

Julie

Hi Julie,

Thanks for your informative response! I do have a bottle of zantac, and will make a point of taking one for the next couple weeks along with the zyrtec to see if it helps. I never actually feel like I'm having breathing problems like wheezing I just feel like I can't ever get enough air. My O2 sats are nearly perfect. I think it has to do with adrenaline because my BP gets to high, I think there's just massive vasoconstriction going on everywhere including my coronaries... but that's just a theory! I think my doctor isn't really willing to try new treatments for me beyond what Mayo has already recommended (salt, fluids, compression, mestinon which I haven't tried yet as we're trying to conceive). Unfortunately, most docs are wary of trying to treat my complicated symptoms (I know this is quite common for most of us here ). If I need further diagnosis, the Mayo neurologist said he'd be willing to see me again.

I already saw the rheumatologist I was seeing for my chilblains and he had the same response when I asked about MCAD as he did when I told him I have POTS and neuropathy: "I don't think you can have that, that's really rare." So I won't be going back to him.

Benadryl does help with the flushing, though, and the burning whole body skin pain that accompanies and follows it. I usually take one prior to going places, but I didn't prior to that dr's appt because I like my doctors to see my symptoms unmasked.

Slowly my symptoms are fading from last Thursday's appt and I have a bit more energy and a bit less skin pain each day.

Thanks again, especially for the prayers. Janie

[ramakentesh]

If your flushing episodes are in response to particular stimuli that arent obvious allergins I dont think it automatically suggests that you have MCAD.

Flushing means you suffer from visual cutaneous vasodilation. Its often attributed to a comorbid Mast Cell Disorder but it does not automatically suggest MCAD. Infact MCAD seems to be a relatively rare finding from more recent work although the principle study on MCAD suggested half of hyperadrenergic patients tested positive.

Other recent work has implicated calcitonin gene related peptide as having a possible role in POTS - and its activity has been found to degranulise mast cells.

In patients with hyperadrenergic presentations in POTS a variety of environmental stimuli like crowded environments, fear, scary movies, etc can cause a crash in symptoms - your flushing could represent a sudden surge in norepinephrine activity or increased sympathetic activity.

The flushign could also represent a strange presentation of pooling due to patchy nervous damage in that area.

Also in some patients, the parasympathetic and sympathetic nervous system responses do not match.

Many antihistamines have a vasoconstrictive action that goes beyond the neutralisation of histamine.

All in all its hard to say but id suggest its more a sign of a hyperadrenergic response that a suggestion of MCAD - particularly when the indicators where not present at MAYO.

[janiedelite]

Yes, my flushing doesn't happen after exposure to an allergen. Stress, physical or emotional, can bring it on. But any talking will do it too, even if I'm lying down or having a conversation with my mom or a friend. Last summer I noticed more flushing and facial burning than I did in the winter. I wonder if the warm weather we've been having lately is causing more vasodilation of the skin. When I flush my hands and feet are also pale, cool and slightly sweaty (another sign of a hyperadrenergic response) while from my chest up I'm hot and dark pink.

Rakamentesh, you are so full of amazing information! I looked up calcitonin gene related peptide and it might fit my case except that excessive releases of calcitonin gene related peptide cause hypotension. But we already know I have a hyperadrenergic response to pooling, so maybe it is the cause in my case. I

really just wish I could ignore whatever is going on with me and be content with the answers I've already received. It's just that when this burning skin and fatigue acts up, I feel so painful and debilitated and I just want relief. I'm trying to just relax, though, and ride it out.

[bjt22]

I don't have flushing at all. However, talking does make me ill. It makes all of my symptoms worse, and my bp does some pretty wild and crazy things. My brother called last night, and we had a long talk on the telephone. Today, I couldn't get myself out of bed until 11:00. Since then, I've managed to walk the six steps over here to my computer. This has happened to me for years. I used to love to talk on the phone, but it's now become something that I can dearly pay for later on.

Talking does raise my blood pressure significantly. I always thought this was normal and I was just sensitive to those changes. However, it's been caught in a medical setting that this happens to me. I've stood up and they have not been able to find my blood pressure. When I start talking, it will come up considerably...we aren't talking in the lowest of ranges, rather, it can immediately pop up to 120-130/80-90. God only knows what it does when I've been talking awhile. From the way they react when it does this, I take it that these kinds of swings are not normal. These swings probably explain why talking makes me ill....My blood pressure is probably going up and down repeatedly every few minutes.

[janiedelite]

Bjt22,

That makes sense that the constant fluctuations of BP would make you feel so ill. Thanks for sharing your experience. When I had my TTT at Mayo, my resting BP was 130's/80's lying down. They were getting the test set up, but had the beat-to-beat BP cuff on me for about 10 minutes and I was chatting with the tech. He kept looking at my BP, which would jump up to 160's/110's after talking for a couple sentences. When I was quiet, it would settle to my baseline BP within 30 seconds. Talk again, same rise in BP. No wonder I feel awful when talking. I asked him if this was normal and he laughed and said "No." Sounds like your BP jumps around to the same extreme but you have a lower BP in general to start with.

[bjt22]

Bjt22,

That makes sense that the constant fluctuations of BP would make you feel so ill. Thanks for sharing your experience. When I had my TTT at Mayo, my resting BP was 130's/80's lying down. They were getting the test set up, but had the beat-to-beat BP cuff on me for about 10 minutes and I was chatting with the tech. He kept looking at my BP, which would jump up to 160's/110's after talking for a couple sentences. When I was quiet, it would settle to my baseline BP within 30 seconds. Talk again, same rise in BP. No wonder I feel awful when talking. I asked him if this was normal and he laughed and said "No." Sounds like your BP jumps around to the same extreme but you have a lower BP in general to start with.

The numbers I quoted above are due to my being on several medications. Without these meds, my blood pressure was going as high as yours, and still bottoming out if I stood up. I think that's what meds do for me....they certainly don't get rid of the problem, but I feel better with less variation when I stand or talk, or heck, even breathe!

Funny about the "normal" thing...so many things I have always, and still do, consider "normal", only to find out that no, it's definitely not normal. And I manage to be shocked at everyone of these revelations!

[ramakentesh]

Interesting thread.

i was reading that mice that were engineered to have NEt knockout - that is no Norepinephrine transporter - experienced decreased heart rate and hypotension in response to fear and anxiety-proviking stimuli.

This is one of the suggested causal mechanisms of POTS - reduced norepinephrine transporter function.

However, we experience the opposite generally - increased BP and agitation. Seems at odds to me.

I also get this thing I call 'concentration' intolerance where for some reason If i read or think hard in the hours before bed i wake feeling like death - like a mental hangover from it - reading in particular can do this. I cannot explain this at all.

Calcitonin gene related peptide is heavily associated with migraine headache - and so is POTS. There was a hypothesis that CGRP being released purely in the stomach region may result in excessive nitric oxide in this region and bloo dpooling there resulting in POTS as a mechanism to compensate for thoratic and carotid hypovolumia.

[bjt22]

I can get "mental hangovers", too. However, something about the very act of talking really does it to me.

I"m trying to digest a lot of this information. It really does seem as if there are several mechanisms most likely at play. Again, its sounding like a "perfect storm" scenario. If one should be so unfortunate to have some sort of NET defect AND have problems with other regulatory substances such as nitric oxide, and, just for fun, let's assume there's some sort of additional post-ganglionic autonomic damage that's occurred...

Do such scenarios describe what's happened with some of us non-typical patients? I think so. I think it's why some can have very "simple" cases of NCS or even POTS and seem to respond very well to treatment and few associated problems while others keep spiraling in all directions with symptoms that no one can really fully account for.

[janiedelite]

Thanks BJT22 and Rama, again, for sharing your experiences and research regarding flushing and talking! My mom and I do wonder if there is a genetic neuroendocrine malfunction in our family being as all of us (mom, brother and myself) have come down with different but rare neuroendocrine disorders in our 30's.

I hope that as more research comes out, all of the autonomic treatment centers and physicians will take advantage of the new knowledge because right now it seems that each institution only implements their own center's research.

Anyway I digress, and the CGRP theory is an interesting one as I get bad headaches with my flushing episodes. I benefit quite a bit from abdominal compression (and leg compression), and sometimes during these episodes my whole torso looks flushed in comparison with my extremities.

So thanks for sharing your experiences and I don't feel so alone and wierd anymore. And Rama, I can understand about the concentration hangover, although I have more difficulty concentrating earlier in the day when my POTS symptoms are worse. I used to devour books, but I can count on 2 hands how many books I've finished since getting POTS 3 years ago.

[firewatcher]

Just to add a little more to the muddy waters: what about overspill from vasomotor rhinitis? It is an autonomic flooding of the sinus passages with blood, for no good reason! When I have it, I get really stuffy, and like Ramakentesh, I pool in my face! Sometimes I'll flush so hard, that my eyes will be bloodshot. I've had several recent occasions where people ask me how badly that "sunburn" must hurt. I too get exhausted afterward...Vandy wants the methylhistamine test ASAP. I am actually on an MCAD regimen, but it is not effecting the flush. How is your Red blood cell count? Mine is high, and that can cause a "ruddy" appearance. Good luck and keep us posted.

[janiedelite]

Hi Firewatcher,

My red blood cell count is normal actually. When I haven't flushed in awhile, I'm actually quite pale. It's just that other times I seem to always have a mild flush going on. My nose gets stuffy and runs when I'm flushing too, but I always thought that was allergies. Who knows? And I'm glad you mentioned about the eyes because mine get red and feel like sandpaper in them or like I've been crying. They still feel like that today, and I haven't worn contacts for the last year because they chronically feel that way. Do your lips, mouth and throat burn during and after a flush? Mine burn all the time anyway (no doctor can provide an answer for this) but so much moreso during and after a flush. My whole torso even burns more and I can't bear to be touched for a good day after the flush. Clothes even hurt.

I'm having a bit of a rough time this morning because our dogs were attacked by another dog last night as we were walking them! There is this one little pomeranian who has chased our 80-pound mixed breed, Apollo, in the past. This time Apollo and Nollie (who is a 40-pound waggy, smiley fuzzball) were in their harnesses and being walked by my husband and I when this little pomeranian runs across the street with no leash, straight for our dogs. We yelled at it and even threw small rocks but on it came, running under my dogs and nipping at their feet. We were hollering for help when Apollo grabbed the dog in his mouth, shook it and let it go and it ran off yelping back to its house and owner . I held our dogs and made sure they were okay while Shawn spoke with the other owner and she apologized profusely. Meanwhile, her dog was bleeding . I know it wasn't our fault, but we still felt awful all night and I'm so tired today. I wish we had a dog's memory because once we got home, Apollo and Nollie were running, wagging and playing tug like nothing had happened!

[juliegee]

Hi Thankful-

Sorry about the dog attack. That wouold have upset me too. Glad it ended well.

One last time I want to reiterate is that many (if not all of your symptoms) are consistent with MCAD. Despite Rama's assertion that it's overDXed, I would suggest letting a Masto specialist sort things out for you.

Your symptoms are very similar to mine and common with MCAD- POTS, flushing in response to stress (not necessarily allergens), stuffy & runny nose, pink & gritty eyes, red burning & itchy bumps (hives), GERD, burning mouth & throat, fatigue, brain fog, and chest pain. I also experience no discenable wheezing and I've never caught a drop in my O-2 sats. My chest pain is quite severe at times and worsens when I breathe in. A high BP is also consistent with MCAD. It often rises in response to misbehaving mast cells before it drops. You and I also share the small bowel dysmotility- GI issues are very common in MCAD. We also have the Raynauds and chillblains- not associated with MCAD to my knowledge.

The fact that benadryl is helpful is VERY telling. Rama is right. It does have vasoconstricting effects- BUT only in response to histamine. It inhibits the vasoconstrictive efects of histamine which is released when mast cells are activated. In normal dosages, it has NO vasoconstrictive effect on the CNS (other than that those described above.

One normal methyhistamine test does NOT rule out MCAD.

I'm a bit uncomfortable reiterating this information, but my conscience refuses to let this go without one more attempt to help. Do what you will with the info. Best of luck to you.

[janiedelite]

I'm glad you keep sharing your experiences, Mack's Mom! I've been taking zyrtec and zantac daily and haven't noticed any decrease in my flushing. If anything, it's provoked more easily lately although it's been warmer here too and heat seems to make me more susceptible at times. But the benadryl sure does help with these episodes so there must be a connection. My PCP is done ordering more tests for diagnosis for now though. If I want further investigation, I'd have to go back to Mayo I think. The rheumatologist I saw here wasn't knowledgeable or helpful. Til then, I'll just keep taking H1 and H2 blockers and benadryl.

You said the high BP is common in MCAD and that it drops afterward. Mine never drops afterward but takes an hour or two to return to baseline.

I don't know if I'll ever really know the cause of my flushing. I guess I feel like knowing the cause would validate my symptoms more, but you guys have already done that by sharing that you have very similar experiences. Thank you!!!

[gertie]

I can relate to the flushing. What I have noticed over the last 20 years is if the person I'm talking to has on any fragrance whether perfume or scented deod, hair spray etc, I start flushing & turn bright red. Any odor, even cooking odors send me into a flush. I do understand how miserable they are & mine won't stop until I get away from the cause. Talking for even a short while leaves me mentally & physically exhausted. I took large doses of Neurontin for years to try to help calm my ANS but I'm not sure if it helped. I hope you get better soon.

[ramakentesh]

Your statement that you are uncomfortable reiterating this information makes me think that you believe that there is a definate and proven relationship in that MCAD is a widely accepted clinical disorder that has been definitively proven to cause 'hyperadrenergic POTS' and that flushing and a positive reaction to Benadryl suggest MCAD in this case.

I wish it was that clear and unequivocal but its not and Im surprised that you could suggest so.

The relationship between MCAD and POTS is unclear and is based on one study. The primary causal factors of POTS remain unclear and research is still in the conjectural phase. The definition used in the one study of 'hyperadrenergic' POTs is still controversial because there is limited evidence that proves this causal subset (that any patients have primary norepinephrine deficiency or beta-receptor hypersensitivity as a causal factor, rather than an expression of abnormal norepinehrine release or patchy denervation hypersensitivity.)

From what Ive read even MCAD itself is controversial.

The symptoms you describe are common in many POTS patients who may not have MCAD and many of them can be explained purely within the mechanics of POTS (cerebral hypo-perfusion and sympo-excitation). Even the research on POTS and its relationship with MCAD suggests that the elevation of mast cells could be a result of sympo-excitation. The conclusion was that the relationship was unclear.

Recent evidence could provide alternate mechanisms that could result in POTS and a finding of elevated mast cell activity or histamines without it being the primary causal mechanism. These mechanisms are just as readily arguable given current research.

Benadryl could be helpful because a patient has elevated histamine as a result of MCAD activity. It could also be helpful because it is a sedative and is dampening the overstimulation caused by reflex sympo-excitation especially given the consist finding of routinely normal levels of histamine in POTS patients in more recent work.

That being said why other antihistamines help other POTS patients is unclear and may be explained with time. I wont make any assumptions on why this is until the research is out there.

[juliegee]

I'm glad you keep sharing your experiences, Mack's Mom! I've been taking zyrtec and zantac daily and haven't noticed any decrease in my flushing. If anything, it's provoked more easily lately although it's been warmer here too and heat seems to make me more susceptible at times. But the benadryl sure does help with these episodes so there must be a connection. My PCP is done ordering more tests for diagnosis for now though. If I want further investigation, I'd have to go back to Mayo I think. The rheumatologist I saw here wasn't knowledgeable or helpful. Til then, I'll just keep taking H1 and H2 blockers and benadryl.

You said the high BP is common in MCAD and that it drops afterward. Mine never drops afterward but takes an hour or two to return to baseline.

I don't know if I'll ever really know the cause of my flushing. I guess I feel like knowing the cause would validate my symptoms more, but you guys have already done that by sharing that you have very similar experiences. Thank you!!!

Sorry, the zyrtec & ranitidine isn't helping Both are imperative to my daily functioning. When I stop taking ranitidine, which I've done for a trial of nexium (before MCAD), my hives were awful. I am very dependent on both. Makes me wonder about the MCAD possibility for you.....but the benadryl helps??? Very difficult to sort out. I'm glad you local docs are still running tests trying to get to the bottom of things for you. Depending on which Mayo you go to, you my get to see Dr. Joseph Butterfield. Best of luck. Keep us posted.

Julie

[janiedelite]

Hi alicia, Thank you for sharing your experiences with talking and flushing too! I was on Neurontin for two trials and on lyrica for one trial and I felt they both did a good job of calming my ANS. Lyrica also really helped with my burning skin pain (and back pain too!). But they totally shut down my GI tract. I took over-the-counter stuff to get it moving but got more and more bloated and uncomfortable until I quit the meds. Wierd!

I had one allergic reaction to a fragrance, but mostly it seems that fragrances just overstimulate my ANS.

Yesterday I was thinking about how my personality has changed due to POTS, and I really think that the horrible symptoms I get while talking have changed me the most. My hubby can tell when I'm not well because I get really quiet. A couple days ago, I felt really well one evening and we were laughing and joking and he said he loved those times because he has his "girlfriend" back. I have had to spend a lot of time on the phone with my health insurance company, and finally broke down yesterday and asked for a Case Manager to help me communicate and decrease my talking time.

Thanks guys! I know there are researchers working hard to find better treatments for POTS. Thank God for them, too!

[juliegee]

Your statement that you are uncomfortable reiterating this information makes me think that you believe that there is a definate and proven relationship in that MCAD is a widely accepted clinical disorder that has been definitively proven to cause 'hyperadrenergic POTS' and that flushing and a positive reaction to Benadryl suggest MCAD in this case.

I was uncomfortable reiterating this information because I didn't want to be "pushy" and because YOU seem very wedded to the notion that MCAD is NOT causing Thankful's symptoms. I was hesitant to contradict you, but my conscience compelled me to share my thoughts one more time.

I wish it was that clear and unequivocal but its not and Im surprised that you could suggest so.

There has been a documented correlation between MCAD and POTS, but it is in it's infancy and poorly understood. I agree, more research is definately needed. I am a member of a Masto support group. Many there (mastocytosis & MCAD patients) also suffer with autonomic dysfunctions. So, I've also anecdotally seen this played out. I never stated that MCAD was the cause for Thankful's symptoms. I commented on the similarity of our symptoms and recommended that she see a Masto researcher to untangle things.

The relationship between MCAD and POTS is unclear and is based on one study. It's actually more than ONE. I'll be happy to post links later The primary causal factors of POTS remain unclear and research is still in the conjectural phase. The definition used in the one study of 'hyperadrenergic' POTs is stillcontroversial because there is limited evidence that proves this causal subset (that any patients have primary norepinephrine deficiency or beta-receptor hypersensitivity as a causal factor, rather than an expression of abnormal norepinehrine release or patchy denervation hypersensitivity.)

Rama, you seem quite well versed in medical jargon and are refuting many autonomic specialists prior research and findings- rather adamantly. We agree that more research needs to be done. We agree that NO ONE knows the exact causitive factor in POTS. (I'm sure there are many that overlap.) I am simply sharing my experience so as to help Thankful. Like her, I was very incapacitated before being on my current regimen and finding my current doctors. It would make me so happy to even help one person out of the misery that this illness creates.

From what Ive read even MCAD itself is controversial.

Absolutely true. We've chatted about that extensively here.

The symptoms you describe are common in many POTS patients who may not have MCAD and many of them can be explained purely within the mechanics of POTS (cerebral hypo-perfusion and sympo-excitation). Even the research on POTS and its relationship with MCAD suggests that the elevation of mast cells could be a result of sympo-excitation. The conclusion was that the relationship was unclear.

I would be very surprised to learn that all of my symptoms were caused by POTS alone, especially the hives and anaphylaxis. The first time I used my epi-pen, ALL of my symptoms ceased. I was about to lose consciousness. It was miraculous and eye opening and the reason I sought a DX. I feel certain that SOME allergic/mast cell process is behind my autonomic symptoms. My allergist (from Mayo) explained that when I am "reacting" to a trigger, my blood vessels leak fluid out, causing the low blood pressure (for me), low blood volume, and subsequent high HR especially with postural changes. My response to my MCAD treatment has stabilized that. Why else would H-1's, H-2's, singulair, atrovent, epinepherine, etc. make such a dramatic difference? I may be very rare, but I doubt it .

Recent evidence could provide alternate mechanisms that could result in POTS and a finding of elevated mast cell activity or histamines without it being the primary causal mechanism. These mechanisms are just as readily arguable given current research.

WHY are you so adamant that MCAD isn't behind Thankful's symptoms? I'm simply trying to help her. What's your motivation?

Benadryl could be helpful because a patient has elevated histamine as a result of MCAD activity. It could also be helpful because it is a sedative and is dampening the overstimulation caused by reflex sympo-excitation especially given the consist finding of routinely normal levels of histamine in POTS patients in more recent work.

If that were the case, why doesn't a sedative of some sort work just as well? Trust me, everyone I know with MCAD has been prescribed things like ativan and it simply doesn't work. You're right. It is often difficult to catch elevated urinary methylhistmine and even serum trypase as their release is associated with very severe symptoms.

That being said why other antihistamines help other POTS patients is unclear and may be explained with time. I wont make any assumptions on why this is until the research is out there.

Rama, I appreciate your information. Please remember to leave room for voices and perspectives other than yours. I'm just sharing my experience and trying to help.

Julie

[ramakentesh]

Im not wedded to any cause when it comes to POTS. Im just making sure people are aware of all and not just some of the possibilities. MCAD is an attractive idea but its also confused. As an example, most people who experience anaphalaxis (sp?) have postural hypotension, so why would histamine from mast cells result in postural hypertension. Although then again that may not actually be that relevant to the whole thing.

I dont mean to 'smother' your opinion. The way your post was wordered suggested that you were reporting a few things as fact rather than opinion (be they based on your considerable experience) so I thought that I should clarify the issues.

are refuting many autonomic specialists prior research and findings- rather adamantly

Im not really refuting anyone, im just pointing out that there were flaws in the major study on MCAD and POTS. These are flaws that were brought to my attention by my own specialist at the times and by a friend who is a medical researcher. Im never refuting any study or idea, but I am quite often trying to explain that many things that are talked about as givens with POTS are not actually givens - that there is other well-researched work out there that refutes this givens.

Some people like to be selective about what references they refer to or comment on based on whether the study fits their concept of the condition they are researching. This seems to happen a bit in some POTS research and could potentially prolong the time it takes to find the real answers.

I would be very surprised to learn that all of my symptoms were caused by POTS alone, especially the hives and anaphylaxis.

Obviously you suffer allergies as well and from what I gather you have received an unequivocal diagnosis of MCAD. However, heightened allergies and sensitivities do occur in patients who have been found negative for MCAD and they can also occur in auto immune and inflammatory disorders. So allergies and reactions arent always indicative of MCAD.

[juliegee]

"Im not wedded to any cause when it comes to POTS. Im just making sure people are aware of all and not just some of the possibilities. MCAD is an attractive idea but its also confused. Many highly recognized researchers disagree with that opinion. As an example, most people who experience anaphalaxis (sp?) have postural hypotension, so why would histamine from mast cells result in postural hypertension. Although then again that may not actually be that relevant to the whole thing."

Researchers aren't sure WHY some patients with anphylaxis and mast cell disease present with hypertension. Some theorize that it's the body's attempt to maintain homeostasis that causes the rise in BP. In full-blown anaphylaxis, patients ultimately present with severe hypotension- but there is a group that initially presents as hypertensive. AND (when not in anaphylaxis) some mast cell patients show great variability in BP- both hypertension and hypotension.

Im not really refuting anyone, im just pointing out that there were flaws in the major study on MCAD and POTS. These are flaws that were brought to my attention by my own specialist at the times and by a friend who is a medical researcher. Im never refuting any study or idea, but I am quite often trying to explain that many things that are talked about as givens with POTS are not actually givens - that there is other well-researched work out there that refutes this givens.

'Preciate that. I'm just humbly & (not very well!) representing the other side.

Obviously you suffer allergies as well and from what I gather you have received an unequivocal diagnosis of MCAD. However, heightened allergies and sensitivities do occur in patients who have been found negative for MCAD and they can also occur in auto immune and inflammatory disorders. So allergies and reactions arent always indicative of MCAD.

Actually, I suffer from NO allergies. I've had the full nasal and anaphylaxis series of allergy testing AND some specific RAST blood testing for triggers that are known and I react to NOTHING. That's the mystery of mast cell disease. Anything can set me off and it can change from day to day. Very frustrating. Show me evidence that this is not MCAD. I'd really love to learn. I am open to other possibilities Really, I am! Please send me links to research that shows my symptoms can be caused by auto-immune and inflammatory disorders.

My masto specialist is Dr. Marianna Castells from Brigham and Women's- Harvard Medical School. My local allergist is from Mayo. These top docs and many others regularly see patients like me with mast cell disease and (coincidentally) autonomic dysfunction. I really think there is something to this connection.

I will work on not being so intimidated by your definite views and try to understand them.

Julie

[ramakentesh]

Ive never read any material reporting orthostatic hypertension in analphlaxis other than the link that Firewoman posted so which researchers are you referring to?

So when you say that you have no allergies do you mean that during testing to precipitants you did not have a Mast cell flushing episode?

Im not sure what your symptoms are, but if you experience POTS with flushing then Im confused why you seem closed to the idea that it could have other explanable mechanisms.

If I remember correctly you experience blood pooling in your extremities which for a start does not suggest a 'hyperadrenergic' form of POTS which you state is the only type that occurs in Mast Cell disorders (based on the findings of Biaggani (sp?)).

Perhaps there is a connection between MCAD and autonomic dysfunction. Im certainly not suggesting otherwise, but I am suggesting that most of the research available and thus the conclusions drawn from those studies are in their infancy at present so to suggest otherwise is premature.