Normal Tryptase - Can It Still Be Mcad?

[POTSMama]

I am trying to get a proper diagnosis for the crash I've had after living just fine with POTS for 20 years. I had an allergic reaction to an antibiotic, and since then have been reacting to foods with throat/stomach irritation and flushing and much worse POTS cardiac symptoms - - not being helped yet by antihistimines (have stopped the diarrhea but not the flushing, exhaustion, POTS flare). Here's my question - -

Allergist called and said I had normal tryptase levels and didn't test allergic to any of the foods I seemed to be reacting to. He said all that was abnormal was a slightly elevated total IGe. So he says not mastocytosis, but I am arguing with him that I think it's MCAD underlying my hyperadrenergic POTS, which of course he knows nothing about (gave him the Vanderbilt researcher's article). Allergist still wants to chalk this up to a major allergic reaction that will subside with time - - if only he's right. But any of you with an MCAD diagnosis also get normal serum tryptase levels? What else can I do to convince the allergist to test for MCAD (and how to do this?) short of flying to one of the experts out of state (not easy for me to do)? Anyone know of someone in Colorado I could go to who would understand POTS and MCAD?

Carol

[juliegee]

Hi Carol-

Sorry you are doing so badly lately. I think it's safe to say that all of us with MCAD have a normal serum tryptase level. If it is consistently elevated, the patient has mastocytosis. If is it elevated only after an "episode," that would be indicative of MCAD. BUT, many with MCAD have never "caught" an elevated serum tryptase. Your doctor doesn't have enough evidence to rule out MCAD, but he's correct that you most likely do NOT have mastocytosis. He may not be aware of all of the MCAD diagnostic criteria.

Your elevated IgE is indicative of standard allergies, BUT MCAD patients can have standard allergies along with highly reactive mast cells.

What is your current med regimen?

I have heard of two doctors in Colorado who treat mast cell disorders. Maybe you can do some research and find out if they know about MCAD & POTS. Hopefully, someone else will chime in with additional knowledge of good mast cell doctors near you. One is Richard Weber, at National Jewish who has a good reputation among mast cell disorder patients. The other is Stephen Dreskin at CU Medical Center in Denver. I've heard it takes a while to get an appt. with him.

All the best-

Julie

[anaphylaxing]

Have your doctors excluded Pheochromocytoma and carcinoid?

After that, and if H-1, H-2s and mast cell stabilizing meds help then that's all they can do. MCAD is an evolving entity as far as its diagnostic criteria and is poorly understood.

Hang in there!

[Annaliese]

I have suspected ive got MCAD for a while. I had serum tryptase measured and it was normal. But, just a few days ago i got a UTI and i got flush after flush after flush. This has to be a histamine response. I went asap to the drs and asked him to measure serum tryptase. Fingers crossed it will show up as it was bout 5 hours since the flushing. Perhaps you can try and induce flushing and then go and get a test? It is sooooooo frustrating knowing you have a disorder only to be ignored by the drs.

[issie]

Doctors told me that they have to do the blood draw within an hour of the flush/eposide to catch the mast cells. Noramally, they are not in the blood and if it's not caught within the hour - it may return back to normal. They also have you start an immediate 24 hour urine test to measure this in the urine to see if you are dumping larger amounts. My doc got a baseline and now we're waiting for the big eposide to hit and see what the test measure then.

[POTSMama]

Thanks, everyone, for your advice and suggestions! To answer questions: I had pheochromocytoma ruled out twice in the past 20 years with 24 hour urine tests because of my hyperadrenergic symptoms/tachycardia, so the allergist decided not to test for catecholamines again. I did do the 5-HIAA 24 hour urine test for carcinoid, and I'm still waiting on the results and praying that is not it as that sounds worse than MCAD (and I'm wondering if I should ask for the gold standard blood test on that if it comes back negative). It is true that when they took blood for the serum tryptase level I wasn't having a bad day unfortunately (not even symptomatic that day). I had one day early last week where after lunch I'd flushed/rashed/throat irritated and been a mess of POTS symptoms for a couple hours, but it took me another day to get in to see the allergist and I felt fine that day. Then 2 days later (4 days ago) I started having nearly nonstop symptoms, so I did do the urine test during a time I was symptomatic, but that is only for the carcinoid test. For the last 4+ days, my symptoms haven't seemed to abate at all and this is nearly completely disabling me, something I've avoided for 20 years of POTS!

Mack's Mom: My current drug regiment is: Zantac/ranitidine 150 mg 2x/day, Atarax/hydroxyzine 25 mg every 4-6 hours during the day and 2 before bedtime, Benadryl as needed but no more than 2 per 6 hours. When I get into one of these terrible bouncing BP/pulse moments (about once a day, and for unknown reasons often about 8 pm at night), I sometimes take a Klonopin/clonazapam to try to calm down my nervous system (and my anxiety because these episodes are really awful).

I wasn't getting enough relief so the allergist called in Singulair and suggested I take 5 mg 1x/day. I tried it yesterday, but I haven't again today as I think it might have caused a reaction - - he had given me only the 5 mg chewables because I told him I always start small and titrate dosages upwards as I am very sensitivite to medication. I took 1/2 a pill twice yesterday and both times it felt like my throat went weird and 20 minutes later I felt very awful with flushing, light headedness, etc. I can't be sure it was the Singulair but I'm afraid to try it again - - I'm wondering if it's because the chewables have red dye and aspartame in them that I might have reacted to. Do you think adding Claritin might be a good idea instead of the Singulair and since it's OTC? Also, I'm not eating well as I'm afraid of reactions, so I started drinking some Ensures, Pedialyte for electrolytes, and I also went back on my Vit D supplement (I have nearly unmeasurable levels of D). I have been gluten-free for about 6 weeks now (did that before this all hit, as I just wasn't feeling well this last year and suffer from IBS, and decided it couldn't hurt).

Thanks for the names of the doctors in Colorado - - I will talk to my regular doctor first thing Monday, and bring my husband with me if I can, to confirm that I am not just being "anxious". this doctor knows a fair amount about POTS (he was the first one to finally come up with a proper diagnosis for me) but knows nothing about MCAD and he and allergist seem a bit reticent to consider that being the issue (I brought it up after my own online research). I am going to print out some articles and info from forums here, and talk to him about doing an MCAD workup or referring me to the Colorado docs you mentioned - - I am also going to send my info to Vanderbilt to try to go there for a POTS/MCAD workup if they'll take me. I know that methy-histimine in urine after a flushing attack is sometimes done, but does one have to be off the anti-histimines to do that? No way can I get off them right now, because when I forget to take a dose I start flushing/hot on neck/head, blood pressure whacking from like 220/160 to 96/50 in 30 seconds and back again, and pulse going from 40 to 110, and I feel awful and I also start reacting more to food (e.g. little red dots on my uvula and reddened back of throat, flushing, itchy scalp, crawling/hot feeling down head and back).

A week ago, despite having had some flushing and allergic episodes and occasional BP/pulse abnormalities, I was a busy working mom, buzzing from job to picking up kids to cleaning house to taking kids to activities to taking care of elderly father who lives down the street, to volunteer activities, etc. But the past week I have not been into the office, had to depend on husband and neighbors to take/pick up kids, house is a mess, and I feel dizzy if I'm off the couch moving around for very long and I'm afraid to drive. My husband is beside himself with worry both about me and about how we'll manage if I don't improve soon, and this is especially difficult for us as he was out of work for 3 years in the recession and just got a job a few months ago so can't risk this job by being gone too many hours (especially if I can't get back to work again soon). My kids need some doctor checkups and I feel like I can't safely drive them, and we don't have a lot of support or family resources (and brother with Parkinson's is already stretching what we have). So I'm feeling very depressed and scared, I admit. Sorry to whine, but I figure everyone on here will understand this better than others who look at me and think I'm fine, because of course this is mostly an invisible condition!

Someone please tell me that they got suddenly bad like this, after years of being manageable POTS, but after finding the right meds/doctor/triggers to avoid, was able to live a normal life again! I know I may have to slow down - - already thinking of telling my boss I need to go from full time ot half time if I can't get back soon (think he'll let me if I can just get back into the office again part of those hours anyway - - I can work at home some in the type of job I do) - - but thinking of taking some short-term disability leave first if there's any way I can document needing this (I simply don't see that I can go to the office and work 6 hours the way I'm feeling and with these scary attacks from time to time). I'm also letting my older girls (5th and 6th grade darlings who are really trying to help out) do more chores for more allowance. But I can't be an effective mom/husband/daughter/person like this and so I am feeling very, very depressed (whereas I'm usually a pretty cheerful half-glass-full person most of the time).

Carol

[juliegee]

Oh Carol-

You have been through the wringer...and are still in it YES, I've been bedridden and recovered. I KNOW that awful feeling of everything coming loose (family, finances, household) because you simply can't trust your body. There is NOTHING more frustrating and frightening. My heart breaks for you.

That being said, you are one sick cookie right now and you NEED to care for yourself & put yourself first until you straighten this out. Do you possibly have a family member, who could come and help out for a bit until you are more stable? I've had to ask for that before- didn't get it- but I've been that ill before and somehow muddled though. I remember the depression that you are describing. I would dread waking up, knowing what I could expect. Better days are ahead. You will figure this out.

You NEED a mast cell specialist pronto. I would highly recommend traveling to see one of the docs at Brigham and Women's in Boston OR have your local docs get in contact with them. I highly recommend Dr. Marianna Castells. She does phone consults. She or any of the mast cell specialists there will be much more helpful that the Vanderbilt docs. From what I understand, they will DX MCAD, but don't provide ongoing treatment. If you can't get there, by all means RUN to Colorado to see one of the docs I found.

You are taking VERY high doses of H-1's and getting little symptom relief. I think your doc is on the right track by adding the singulair. I found that very helpful. The additives in the children's version MAY be what's tripping you up. Could you cut a regular 10mg adult tablet in half? The other glaring hole in your regimen is mast cell stabilizers. Gastrocrom, ketotifen, nasalcrom, sodium cromolyn are a few. Some get great relief with these in addition to the other meds you are already taking. I don't think that claritin or even benadryl is necessary, given the very high dose of atarax that you are taking. Another potent H-1 is doxepin. It is stronger than atarax. I had to take the doxepin for almost a year before I was stable enough to switch to the atarax. You may be able to benefit from doxepin in the evenings now and atarax (as little as possible) during the day. Doxepin is an old-fashioned anti-depressant. in low doses, it provides relief and stability to mast cell patients. When I was as sick as you are, I was also put on prednisone for a short time to help stabilize me. Have any of your docs recommended that?

I know I will anger some by suggesting this, BUT your worsened symptoms seem to coincide with going gluten-free. I recently tried a gluten-free diet for about a week and ALL of my symptoms GREATLY worsened. I don't know why: my GI, autonomic symptoms, flushing- EVERYTHING. I even came close to fainting while sitting. I wonder if there is something in gluten that calms mast cells down. I have read about an endorphic response that we get from it. Google gluten withdrawal. Maybe you are having an extreme form? Perhaps going gluten-free cold turkey was too much for your body. ANY change makes those of us with reactive mast cells go crazy. Once I ate a piece of bread, my symptoms began calming down. No kidding. Just a thought. Also, be careful with the dairy. I know Ensure is tempting, but many have a hard time (when so symptomatic) with dairy.

Carol, I am so sorry things are so rough right now. Do you have an epi-pen? (You definitely need to carry one.) I'm sending prayers and good thoughts your way. Please keep us posted on your progress.

Hugs-

Julie

[POTSMama]

Julie,

THANK YOU! I have some hope again thanks to you and I needed that. I am determined to get this under control. I am going to follow up on all you suggest - I'm going to see my PCP doc on Monday and ask my boss for a short leave of absence to get this under control. My PCP mentioned Gastrocom on the phone and maybe he'll give me a regular Singulair sample to try that doesn't have the other additives. I am going to ask him to call Dr. Castells and see if he can either get me in to see her or consult with her and/or the Colorado docs. Hmmm, I wonder about the gluten too (food for thought).

But again THANK YOU - - it helps just to know that it is possible to recover. I really needed to hear that. I am so happy you are better now.

Carol

[issie]

I wasn't getting enough relief so the allergist called in Singulair and suggested I take 5 mg 1x/day. I tried it yesterday, but I haven't again today as I think it might have caused a reaction - - he had given me only the 5 mg chewables because I told him I always start small and titrate dosages upwards as I am very sensitivite to medication. I took 1/2 a pill twice yesterday and both times it felt like my throat went weird and 20 minutes later I felt very awful with flushing, light headedness, etc. I can't be sure it was the Singulair but I'm afraid to try it again - - I'm wondering if it's because the chewables have red dye and aspartame in them that I might have reacted to. Do you think adding Claritin might be a good idea instead of the Singulair and since it's OTC?

If you have low NO (nitric oxide) levels, glutamates can lower NO even more. Aspartame is a glutamate. I can't take Singular - makes me feel a whole lot worse. I can however, take Claritin and Tagament. This works well for me and if I'm really bad I'll use Nasalcrom. But, not real regular on that as it tends to make me feel dehydrated more and it makes my nose raw. But, if you're having bad environmental allergies - Nasalcrom seems to help allot.

[issie]

With allergies to foods (i.e. glutten) our bodies will crave the things we are allergic to the most. It is like a drug to us and the detox can be brutal. This could be part of the problem. With cutting glutten out you are most likely cutting yeast out too. You could be having a yeast die off and that makes someone feel very, very ill. But, the best thing to do is stick to NOT eating it. It will just feed the bad yeast and that makes them happy and they calm down. But, once the bad has died off - you will feel better in the end. If you start back to eating/drinking what you are allergic or sensitive to - it starts the circle all over again. Think of allergy things as poision - even a little bite of a poision could be deadly. It's worth trying to stay off of it for awhile and see if you get past the die off and see if you feel better in the end.

[aunie]

Mack's Mom,

I was wondering if you had the information for the doctor in Boston, like a phone number or a website link, so that I could contact her. I've tried to find her on the website and cannot find her in the directory. I also am having MCAD issues and am trying to find a doctor. I live in Louisiana, but I will travel if I need to. Any info would be most helpful. Thanks!

Andrea

[Godsgal]

Just wanted to throw my 2 cents in here...I have MCAD and my tryptase is ALWAYS normal. Getting on the right meds is critical. If you are seriously reacting, take a good look at what you take. Singulair chewables would mess me up big time. And I have to start slow too. I would take an adult Singulair and just cut the thing in half before I took kids meds because of all the junk in them. The singulair helps me a lot. I take it twice a day. Doxepin is supposed to be 60-80 times more powerful than benadryl. Wish I could take it but it interferes with midodrine. If you're seriously reacting, try a change in meds and monitor what you are doing & eating closely. My heart breaks for you too because I have lived this very scenario too many times and it is heart wrenching to live with daily. Take care, prayers, & hugs.

[POTSMama]

Update on me - - Still sick but hopeful I'm perhaps getting a little better in some ways. Allergist now has me on really high doses of antihistamines (50 mg Atarax 4 times a day, Benadryl as needed [only when having a bad reaction to a food], 50-mg Zantac twice per day and low-dose clonazapam only if needed for heart racing/blood pressure volatility). Also, I am using Nasalcrom to spray my throat 3 to 4 times per day (I do think adding that has helped; I tried the regular adult Singulair split and still had a bad reaction to it, so dropped that one). The POTS blood pressure/volatility and dizziness have subsided some, I'm sleeping better, and I'm confident enough now to drive the girls to/from school and me to/from doc appts, but I did take some weeks part-time medical leave from my job (working at home 1/2 time but not going into the office). I'm supposed to go back to my job Dec 27 and hoping/praying I'll be ready to do so - - I only work three 5 to 6-hour days a week at the office, and the rest of the time home anyway, so hopefully that will be do-able. I am still nervous about it though.

My big problem is still an inability to EAT! I can eat plain chicken (right after I cook it, since I found out that refrigerating meat ups the histamines, so not doing that anymore), plain rice, cream of rice cereal with maple syrup, and steamed broccoli/carrots/cauliflower mix with no reaction. Everything else I react to, some things mildly (like I can handle some oatmeal or granola cereals with rice milk, or granola/rice bars and only have an irritated throat, mild flushing, sometimes a runny or stuffy nose for awhile, and a slight tummyache) but most foods I'm majorly reacting to (tried a few new things this week like avocado, lettuce, wheat flour pancake, tilapia fish, Udi's gluten-free/soy-free/dairy-free mufins, cup of black pekoe tea, fried egg, corn tortilla, squash, etc, in small quantities and had bad reactions that sent me running for 1 or 2 Benadryl; For instance, my blood pressure/pulse would drop out and then soar, I'd get lightheaded, scalp start itching or get bumpy, hands and feet go ice-cold and get this weird shiver down my spine or hot flush on the neck/back/face... just an overall awful feeling about 10-30 minutes after eating a food, which is quite anxiety inducing - - even though I did get an epi pen now). So now I feel like I've almost become afraid to eat - - I started this odyssey at over 162 lbs, and now I'm at 148 lbs a couple weeks later, after having unsuccessfully tried to lose weight by dieting and exercising the last 2 years [i'm ruefully trying to think of that as the bright side of this illness; at least I'm getting back down to the weight I should be at]. I'm especially afraid to try new foods when I'm home alone with the kids at school and hubby at work. So my diet is super limited right now. Does anyone have a suggestion what foods to try next? I was vegetarian except for seafood and fish before this, but I'm forcing myself to eat chicken as it is one of the few things I can eat that is protein and feels alright afterward. But I am very sick of chicken and steamed broccoli!

Had an appointment with Dr. Weber, the specialist at National Jewish on Jan 30, who Mack's Mom Julie recommended, but he badly broke his leg I was told so now it will be early March before I can get in. Just my bad luck! I am thinking of trying the other doc she mentioned meanwhile, if I can get in - - will call Monday and try. My regular doctor was talking about trying me on doxepin or prednisone since the allergist hasn't gotten me eating again, and my regular doc is the one that understands POTS (but not MCAD). But he is gone the next week or so on holiday. So I will just have to stumble through how I'm going, but wondering what might be good food choices to try - - anyone who's been there done that?

Thanks,

Carol

[songcanary]

Hi Potsmama,

I've been there and still doing it lol. It sounds like you are doing a good job of trying foods and charting reactions. It can take up to three days to react to a food, that's what drives me nuts. Currently I have a forehead full of hives and I can't trace the culprit. Grrr. Anyhoo, have you tried any coconut based foods like coconut water or yogurt? The water especially is nutritious. Also, dried peas are a decent source of protein and quinoa is terrific. I can't tolerate it but maybe you can. Be very wary of corn, it is a very common allergen and I go nuts with reactions to corn. It's hard to avoid unless you eat organic whole foods only. That's what I do. Have you tried bison? It's very lean and might be worth a try.

I really feel your pain. It gets better; two years ago I had the terrible weight loss etc. Through trial and error I have a good diet now but it was really rough in the beginning. Take care.

[anaphylaxing]

I've been there, still there too. Everything I eat makes me flush; and right now just eating oats, organic milk/freshly cooked meats, sweet potatoe and rice. I'm on a boatload of meds and steroids and still can't find anything that doesn't make me flush. I have off and on trouble breathing, mild tongue swelling, and itching throughout the day. And my POTS is pretty limiting. I'll keep you posted if I find something that works. Glad to hear you've had some improvement! Hope it continues!

[issie]

Are we all HyperPOTS that have this MCAD disorder? Reason I asked, is I'm starting on Lorsartan and it's supposed to help the high bp's and (according to an old post I read - MCAD issues). I can't find anything saying that - from studies. Mack's MOM - Julie, it was on one of your comments - do you have a research article showing that it should help with MCAD? I'm working with an allergist/immunologist at Mayo and my neuro just called in the Lorsartan for me to try. Trying to get data to support the idea that this may help. I know that Lorsartan will vasodilate the veins and should help with blood flow and oxygen - but didn't realize there was a connection to MCAD with it too.

Issie

[POTSMama]

I am pretty sure I am hyper pots also - - I fit those symptoms and long ago I was told I was "hyperadrenergic" (by Vanderbilt docs, before the term POTS started to be used - - I was a young college professor at Vanderbilt at the time, when my symptoms first began - - 20 + years ago). Also, the recent Vanderbilt docs article suggested a connection between hyperadrenergic POTS and MCAD. I realize looking back that some of my current MCAD symptoms may have started in a milder form years ago but weren't so bad I couldn't ignore them. I think the Vandy docs article was suggesting that the POTS might actually be secondary to the MCAD, rather than the other way around, but I'm not sure. I'll have to look up Lorsarton.

Does everyone with HyperPots and MCAD see a neurologist also? I see only my PCP, who is good at understanding the POTS part, and an allergist/immunologist who isn't doing that much for me and doesn't understand this, so I'm looking for someone better. Does it make sense to look for a neurologist or some other doc too?

Carol

[issie]

Most of us do see a neurologist - since they deal with the nerves and the autonomic nervous system is definitly connected to that. A good many of us also have some sort of neuropathy that the neuro docs deal with. But, if your PCP is doing you good and you feel that he/she is on top of your symptoms - don't fix what's not broke. Because I was FINALLY diagnosised by Mayo - they use a team approach and send you to nearly every kind of doctor you can think of. Thankfully, one of my doctors is one of the docs noted as having interest in POTS - Brent Goodman. Also, my allergist/imunologist is Dr. Lewis and he's learning about POTS and that a good many of us have these MCAD issues. He is doing allot of research right now in trying to figure this out. He says there is really only one study showing the connection and he wonders why more studies haven't been done. Since I do have autoimmune issues in addition to POTS - he's trying to figure that one out too. I'm to see him next week and he's been to several conferences recently - so hopefully, he will have more input.

[bensman]

Dr. Grubb says I am hyper, but my blood pressure shifts low and high. I do have MCAD (high histamine level and heparin) and POTS (per TTT), but my angiotensin is low. My catecholamines are high on standing. It's all so confusing to me.

I have not seen a neurologist, but probably should.

Issie ~ I hope the new medication is helpful for you!

[juliegee]

Hi All-

I'm just back in town following a family burial (funeral last weekend.)

Issie- I was better versed in the lorsartan stuff and how it affected ALL of my conditions last year when I was studying it. As I recall, lorsartan helps MCA by inhibiting angiotensin II, which is involved in signaling chymase, a protein stored primarily in mast cells. Chymase (released during mast cell degranulation) has been implicated in endothelial inflammation and vascular remodeling. This is a part of the process that occurs during Kounis syndrome. I know you have dealt with something like that & really feel that this medication could be VERY effective for you. Please share your experience with it to benefit us all. Fingers (and toes!) crossed that it helps.

Julie

[juliegee]

Hi Carol-

So glad that you have an epi-pen and are feeling a little more stable. I wish you were making better progress. I have little helpful advice with food as I rarely make direct correlations between what i eat and my reactions- with the exception of a few things that triggered HUGE reactions. Rice and chicken are safe food for me too during very reactive periods. I am afraid to recommend anything else as we are all so different. I think it is going to have to be trial and error. Have you considered gastrocrom? It is a mast cell stabilizer that is VERY helpful to folks who react to many foods.

I am still concerned about the extremely high dose of atarax you are taking. It is NOT unheard of- but shows me just how terribly reactive you are. (I knew a woman who was taking about 10 25 mg atarx a day- sounds like you are close.) Another drug to consider for PM is doxepin. I recently read (maybe from God's Gal/Jared?) that it is 60-80 times more potent than benadryl. Many "masties" take that when they are reacxtive as you presently are. I think a low dose at night, 20 mg- maybe a bit more- would allow you to take less atarax during the day. Hope you have a doc you can talk this ideas over with. I AM devastated that the doc you tried to see was unavailable. You really need input from a mast cell expert pronto.

Aunie-

The mat cell researcher I saw in Boston is Dr. Marianna Castells at Brigham and Women's. Here is a link http://physiciandire...pict_id=0000698

You can even check her out on youtube talking about mast cell activation.

All the best-

Julie

[issie]

Julie,

Sorry about the death in your family.

Thank you for responding to my question. If you can find any research articles that you ran across in regard to Lorsartan and MCAD that would be greatly appreciated. My appointment is next Thursday. Hoping to be equipped to talk to the Doc about this as a possibility for others.

Issie

[potsmomma]

Issie. That's crazy about the nitroglycerin helping you:. They gave me that to put under my tongue during my TTT and my heart rate skyrocketed, bp dropped nd I shook uncontrollably. So interesting, our different reactions.

Heather

[issie]

Yeah, it brought my blood pressure down really nicely. It was at stroke level and the main goal was to get it down. It gave me a horrible headache and I was more shakey - but had to endure 3 doses under the tongue and a patch for 16 hours. I think my reaction was a histamine reaction and had taken allergy meds before going to the hospital and also asked for an IV when I got there. Kounis Syndrome is an allergy reaction that affects the heart and if you look up the treatment for it - that's exactly what was done for me. I was okay to go home the next day. I was totally wiped out and my heart/chest hurt pretty bad. But, when I went in there I felt like I was having a heart attack and so did my husband. And then so did the emergency room doctors - but the levels that they check every so many hours never showed damage to the heart muscle and all my heart test that they did came back okay. Except for the terrible POTS symptoms and irregular heart rates and a few long QT's. They never could pick these QT's up later once my bp stablized and on an additional heart rate mointor test I did later.

Later I figured out I was having a reaction to glutamates in sugar free gum - from the aspartame. I make sure I read labels now.

[issie]

Oh, and glutamates can cause an increase in the NMDA response and cause an excitory response in the nervous system. Nitric oxide and Tramadol are antagonist to this system. So far, Tramadol with Bentyl have been my best treatments to date for POTS.