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I’m not sure if this is posted in the correct location but I’m trying to learn more about the connection of some of my issues. I was wondering if you can explain (or send me to where you have already explained) the theory on why those with EDS are more likely to have Mast Cells or high histamine levels.
I just learned about mastocytosis last week. The doctor mentioned that I have high histamines and wants me to be checked for mastocytosis. So I don’t know yet if I have that or if I just have high histamines or a histamine intolerance. Or are they one and the same?
Also, many in my family have brown blotchy skin but we thought it is from hormones (melasma). Could that also be an indication of mastocytosis or just a coincidence?
This site seems to indicate that this is common with EDS. I also have dysautonomia and POTS. I flush after I eat and often feel so drained of energy I can hardly sit up, much less stand up, after eating.
The part that makes it more confusing, and we are in the process of testing to be sure exactly what our problems are, but my sister has lost part of her intestines and her liver to very progressed carcinoid cancer at only 39 years old. Her symptoms match up with the rest of ours (my mom, brother and my symptoms)so we are all concerned about the causes of our flushing and other symptoms.
Right now it is all so complicated so I’m simply asking how histamines and mast cells might connect to EDS.
Thank you,
DeborahIn my studies over the last few days I have learned a lot more about histaminosis. After learning about mastocytosis at http://www.youtube.com/watch?v=zaPo0r37wEc&feature=related and from information at the forum, I am starting to understand it better. It does seem that the mast cells would be more likely to get out of control in our tissue if there is a connective tissue disorder. So that makes sense a little.
It also seems that the high histamine levels somehow trigger the tachycardia and other POTS or dysautonomia symptoms. It even seems that the histamines may be released by heat. If so, that would explain why the heat makes me so sick.
I’m trying to cut back on histamine producing foods and high histamine foods adn I’m keeping a food diary. Keeping the diary is really helping me to recognize my symptoms more. I would not have said nausea is a regular occurrence but now that I’m keeping the diary I put nausea down after almost every meal. It lasts for a short period of time after eating. Headaches come and go too – a LOT more than I thought until I had to write it down.
Here’s another very good site to learn more about it: http://www.histrelief.com/4/FAQ.html
Any further insights are very welcome.
DebHi Deb, I’ll have some more info about the mast cell/EDS/POTS connection in Part 2 of my theory (did you read part 1, BTW?). I have not ruled out the possibility of a congenital mast cell disorder (our mast cells are not normal mast cells – they are shaped irregularly and rather than decrease in number with age, ours increase). But I think at this point we are all throwing out possibilities and mulling them over.
One important thing to note: more than half of the people with mast cell disorders respond beautifully to treatment, but the diagnostic tests are negative. It can be a booger to diagnose! Many, if not most of us with symptoms put our toes in the self-treatment mode and if we respond, then we jump into prescription medications (for example, in our family ALL of us had flaming cases of mast cell disease, but testing — except for bone marrow biopsy; haven’t done that yet — came out negative. We responded beautifully to OTC double dose Zantac/Zyrtec and now are going on prescription Gastrom. The downloadable ‘Patient Experience letter’ here is helpful: http://mastocytosis.ca
Interestingly, I got sick 8 years ago, and somehow stumbled on Zyrtec. When I was out and my insurance tried a substitute and it was not working, I remember calling the neurologist in a full-blown panic. I didn’t know why it helped, but without it I was non-functional. Unfortunately, I was not on a double dose, I had breakthrough episodes, so I thought the Zyrtec may have been a red herring and I STOPPED TAKING IT. Shoot me. We may be at the entry level of understanding this, but we are getting there!
Big hug, DianaDr D… since 45% of folks are Alpha Tryptase deficient, I’m not surprised that ppl are not being diagnosed! I think Mast Cell Diseases will prove to be far more common than they are now thought to be.
Deb… I am not aware of any research into Mast Cells and EDS. However, there has been a good bit done on Mast Cells and tissue remodeling. I expect it will take awhile to learn about all the ways Mast Cells are involved.
Gotta clarify something… 45% of Caucasians are Alpha Tryptase deficient.
Deb… I am not aware of any research into Mast Cells and EDS. However, there has been a good bit done on Mast Cells and tissue remodeling. I expect it will take awhile to learn about all the ways Mast Cells are involved.
There is a geneticist in Canada who is exploring mast cells and EDS (he believes that POTS = mast cell disease! Wouldn’t that be a kick in the pants? 🙂
You are way ahead of me — do you know if mast cell treatment treats alpha and beta tryptase issues?
Thanks so much!
🙂Since both Alpha and Beta Tryptase are products of Mast Cells, I think it would be a good bet that a stabilizer would treat both… not to mention all the other mediators a Mast Cell releases.
There is a physician in SC that thinks the same as the geneticist. I’m not sold on that at this point, but perhaps. And yes, it would be a kick in the pants since I have treated for POTS for eons, it seems.
Oh by the way.. it is my understanding that the Mast Cell problem is only found in a subset of POTS.
Diana Just wondering who the Geneticist in Canada you were referring to is? I am trying to get as much info to my Dr as possible and being in Canada I would love for him to talk to this geneticist
Dr. Diana,
Thank you for your recent video on the mast cell side of the Driscoll theory and the answers to email questions about Diamox, etc.It was very interesting to me to hear that mast cells can cause cysts in the liver! Finally, an answer! I have several cysts and no one knows why, but I also have at times horrible pain in my liver area! All my liver panals are fine, and if anything, they go VERY LOW when it is at its worst. Argh. Talk about not helpful at all!
Also, when researching Diamox more (still trying to get these headaches figured out… only on 62 mg at night – can “rebound” headaches happen? I totally get the whole dynamic componant – wondering if I should take another 62 mg dose if I wake up at night with the headache?) I saw a lot of links to psuedotumor. This is very interesting to me because when I was 14/15 and had been plagued with headaches for about a year, my doctor sent me for a CT scan (nice bonus… I reacted to the contrast, scared me bad!) and the report said I had a psuedotumor. Dr. told us it was nothing to worry about and never did anything about it.
Is a psuedotumor related to brain pressure?
Thanks so much!
Diana Just wondering who the Geneticist in Canada you were referring to is? I am trying to get as much info to my Dr as possible and being in Canada I would love for him to talk to this geneticist
Hi, Here is his name and location, but I don’t have contact info for him. Dr. Alasdair Hunter (Ottawa, Ontario) I’ll be working on it, though. I have an article I’d like to get into a peer-reviewed journal that I’d like to discuss with him. Tell you what — whoever gets his info first shares? Sound good? 🙂
Dr. Diana,
It was very interesting to me to hear that mast cells can cause cysts in the liver! Finally, an answer! I have several cysts and no one knows why, but I also have at times horrible pain in my liver area!Also, when researching Diamox more (still trying to get these headaches figured out… only on 62 mg at night – can “rebound” headaches happen? I totally get the whole dynamic componant – wondering if I should take another 62 mg dose if I wake up at night with the headache?) I saw a lot of links to psuedotumor. This is very interesting to me because when I was 14/15 and had been plagued with headaches for about a year, my doctor sent me for a CT scan (nice bonus… I reacted to the contrast, scared me bad!) and the report said I had a psuedotumor. Dr. told us it was nothing to worry about and never did anything about it.
Is a psuedotumor related to brain pressure?Hi, just to clarify — we see liver cysts with EDS, and these patients usually have MCAD. I don’t think we know if the cysts are MORE due to EDS or MCAD, though. However, MCAD DOES cause our liver enzymes to go wack… (fine points, I know). 🙂 YES! Pseudo tumor cerebri is a presentation of slightly high brain pressure. I’m not sure why your doctor didn’t start you on Diamox at that time (the standard treatment). And yes, when my son and I were fiddling with our Diamox dose, sometimes we’d get headaches (usually on the tops of our heads), and sometimes not. As you mentioned, our pressure is dynamic, and interestingly, one of the side effects listed is “headaches”! So we continued to “fiddle” a bit, but eventually the headaches just went away. I’m not sure if it was because the dose was more of what we needed, or if it was just a pesky side effect that went away by itself over time. I went on the 500mg Sequels for a while, thinking diamox was wearing off in the middle of the night. But went off of them when I became too acidic. Now, it’s just not an issue, and I hope the same thing happens to you. Fortunately, my neuro gave me plenty of wiggle room with my dose, and my cardiologist checked my serum CO2 and potassium regularly for a while, until everyone was comfortable with what was going on. My dose stabilized, as did my CO2 and potassium levels. My son still fights with borderline low CO2 levels, but he’s a bit more resistant about taking the baking soda capsules (poor kid). He is, however, attending school now for the first time in 3 years! Yea! Bottom line, fiddle with your dose a bit, roll with a few of the headaches and watch your CO2 and potassium levels. With your doctor’s help, I betcha it will all settle down — it just takes a bit of time. 🙂
re the zantac/zyrtec combo… I already take lansoprazole (a ppi) re stomach acid… would just adding zyrtec work re mast cells or do I need to try switching to zantac instead of lansoprazole??
afaiu lanso does work differently than zantac re stomach acid… is that right??
xxgre the zantac/zyrtec combo… I already take lansoprazole (a ppi) re stomach acid… would just adding zyrtec work re mast cells or do I need to try switching to zantac instead of lansoprazole??
afaiu lanso does work differently than zantac re stomach acid… is that right??
xxgHi Bearcat, You want to be on H1 and H2 antagonists. A PPI helps a lot with too much stomach acid, but it is not an H2 antagonist. There are 4 of them that are FDA approved (all over-the-counter): cimetidine, ranitidine, famotidine, and nizatidine. Pick one of those and add an H1 antagonist (like Zyrtec or Benadryl). You’re on your way! Be sure to check with your doctor for any contraindications first, OK?
sorry -oops- just to be totally clear…
do/can I add the zantac (on top of the ppi) or do I take it instead of the ppi?
xxg
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