Sarah4444

Thanks, Rachel.

I'd love to hear how it goes.

I have never had traditional allergies, but over the last while have started reacting strangely to foods and activities that didn't used to cause me problems - or at least I thought they didn't, maybe it just wasn't as obvious. I think the swollen throat kind of symptoms are on the spectrum of anaphylactic reactions. In my case, I think my main reactions are tissue permeability and blood pressure falling, the effects of which have accumulated over time to turn into POTS. However, I agree that controlling the POTS also seems to reduce the frequency and severity of my MCAD symptoms - I think that the vicious cycle proposed in Figure 4 of the Shibao et al article is accurate, and is what is going on in my body. A combination of POTS remedies (midodrine, compression, fluids/salt, exercise) and MCAD meds seem to be starting to help to some degree, but the balancing act seems incredibly complex and fragile so far.

I was wondering if someone could tell me where to get the adhesive for the thigh-high stockings, and what it's called. And does anyone buy their stockings online, and if so could you recommend a reputable company? Thanks!

Also, according to the literature I got from Dr. Francomano's office, there are over 200 known Hereditary Disorders of Connective Tissue - EDS is only one of them. I have an overlap of EDS and Stickler Syndrome, and am not particularly hypermobile. I suspect that many people have HDCTs underlying other health issues. Maybe people are only diagnosed when they have really obvious signs like hypermobility.

I have definitely noticed that once in a while my room seems to "shift", or the numbers on my clock seem to float around when I look at them. And before trying to sleep my heart is often acting up - I have had lots of trouble with symptoms even when lying down, but I still have to lie down so often/much that I can't say if it's related to lying down at the end of the day.

I have another appointment by phone with Dr. Francomano soon and will try to get more info about her immune dysfunction theory. Also, I was hoping that some of the people who have wondered over the past couple of years if they had mast cells issues might post and let me know how that turned out for them?

Hi Emily - I'm afraid I won't be much help at this point, but pain has been a huge problem for me for decades. Alongside, I now realize I had POTS too (that was probably the reason I had to walk around bent at the waist during exams in university one year because I was so dizzy...). Anyhow, most of my pain is in my back, which confused things for me as I was in a bad car accident in the late 80s and injured my back - but over recent years I also developed knee pain after hurting my knees - I wonder if my joints' reluctance to heal properly has to do with the connective tissue disorder I have. However I also get another "kind" of pain that doesn't always seem related to activity/joint use, and it is in my hips and legs. What is strange though is that even though my POTS has been very severe recently, the pain has been less severe this year than it has been for a very long time - actually that's not accurate - it's still severe, but less frequent. I haven't got any of this sorted out yet - my OI is so bad I am focussed on that, but I suspect it's all related somehow. To make things more complicated, it seems very similar in location and sensation to the bone pain described by people on the mast sites. (Oh yeah, I also had mono?/Epstein Barr in the late 80s)

Dumb question - I suspect I might fit in here too, but kind of don't want to - enough to worry about, check... What do you use to check your blood sugar? A home monitor like those for diabetics? Are they expensive, accurate, etc?

I had constipation for years and attributed it all to using narcotics for chronic pain. However, now that I know I have POTS I imagine that was probably contributing as well. At some point in 2009, even though I took the same pain medications, it all switched over to severe bouts of nausea and diarrhea - by this summer my POTS episodes were awful (and now seem to have been? have become? the anaphalactic episodes Julie describes) and the nausea and diarrhea were very severe. Taking H1/H2 antagonists seems to be helping me, particularly with those symptoms. Unless things had gotten that critical, I wouldn't have made the connection with mast cell issues - I have no allergies, no obvious hives...something weird is going on.

When it comes to blood sugar, doesn't the autonomic nervous system control hormone secretion to some degree? When I was reading about cholinergic urticaria I think I read that they suspect the skin condition may be somehow caused by sympathetic malfunction, which also seems to be possibly contributing to mast cell degranulation (as per the Shibao et al. hypothetical vicious cycle) - wouldn't it be weird if all of us with the same symptom set actually had a NET defect or something, and the POTS caused the mast cell issues, which then led to connective tissue "remodelling" or something? Although that wouldn't work with my family members on the connective tissue side who were born with deformed joints - unless it's already happening in utero. You see how I am driving myself mad with all this...and from what Dr. Francomano said, it seems an assault on the immune system is somehow involved too...aaarrgh

Sue1234 - What is IgA Gliaden, why were you tested for it an by whom? (If you don't mind my asking...). Everything is hard in this condition, isn't it.

Well, so far I seem to be going all over North America collecting rare/strange diagnoses. Like Julie, I keep running into people with a statistically unlikely triad of conditions: POTS, a hereditary disorder of connective tissue/collagen defect, and mast cell issues of some kind. I read last year's thread about potential connections among these conditions and am wondering if people have any new insights/research they'd be willing to share. I drive myself nuts thinking about this; it seems plausible that mast cell dysfunction could underlie both POTS and connective tissue problems, but also that HDCTs could underlie mast cell problems and POTS...and so on. Does anybody have any theories/info about connections among these three issues?

Ashley, it's interesting that we're both struggling with the same issues - feeling like we need to avoid gluten, and yet it's so hard to do so. I'm the wrong person to ask about meal ideas - basically I eat a gluten free dry cereal with milk for breakfast, lentil soup for lunch and meat/veggies/rice or potatoes for dinner. Not much variety but I still can't stand up long enough to cook so I am grateful that others are feeding me and don't want to be too demanding. But with kids and while travelling it's so hard to avoid gluten, not to mention that it's in so many things that taste much better than what I have been eating. I keep wishing I had a personal chef like Oprah or something and could really test the gluten thing out properly. What tests do they do for celiac disease? Sorry to not be much help, just muddling along here. Hope you're managing ok.

My new endocrinologist has had me taking iron supplements daily for at least a year and a half, but my ferritin doesn't seem to go over 15 or so. I'm not pregnant or using hormonal contraceptives, and it seems that my iron tanked around the same time that something did my thyroid in, and when the POTS started getting really bad. I don't know why iron supplements don't help much though. I have been cutting gluten out of my diet (and man do I miss it) but am still so unstable that I can't figure out what is causing what yet - for instance when we travelled recently I ate gluten and then had a really bad couple of days, but it could have just been exhaustion. Then I went off gluten, felt better and then felt worse again while still not eating gluten. I really hope things settle to the point that I can start figuring some of this out. How do you know if gluten is causing anemia - how long did you have to avoid it before your iron absorption improved? It may be underlying mastocytosis that is causing all of it - anemia, hypothyroidism, POTS...does that make sense? Also, does being anemic pull transferrin down or is it the other way around? Thanks, guys.

On my most recent bloodwork my transferritin was normal, my hemoglobin normal, my ferritin low normal (10) like always, but my transferriting saturation was low. I tried googling this but still am not clear what it may mean - does anyone know? Thanks in advance!

Can POTS patients become dependent on compression stockings? I have read that they become less effective over time, and others seem to feel that using them prevents circulation in the legs from improving through exercise to the extent that it might without the use of compression. Are there any people out there who wore compression stockings initially but can now get by without them? Did they help/impede your healing? I don't want to depend on something this itchy that I won't be able to tolerate in the warm weather, but they do help a bit and I find I am starting to wear the more often just out of desperation. Will I end up unable to function without them, while if I had more patience with exercise that would not happen?

Brye - I suspect I am one of the MCAD people, and apparently we're supposed to avoid beta blockers. I am trying the MCAD meds, hoping that will help my POTS. In the meantime my heart just goes nuts and I'm pretty debilitated. Sorry not to be more help here...

I tried metoprolol for a couple of weeks and didn't find much change, positive or negative. I also feel that I have significant cognitive impairment, particularly when it comes to concentration and memory but I don't think it has to do with meds, but more likely with lack of oxygen to my brain (or something else, who knows).

It's very frustrating here in Canada too, and I suspect elsewhere. I truly understand your anger and frustration. Don't give up.

I just started with the antihistamines MacksMom/Julie recommends, then saw a doctor familiar with mast cell disorders who has prescribed others for me. I started with Zyrtec/Reactine and Zantac in the mornings and Benadryl and Zantac at night. Sodium Cromoglycate is a mast cell stabilizer - here in Canada it is available over the counter as a nasal spray, but I have a prescription for the oral version, Nalcrom, which you dissolve in water and take before eating. It has helped with my GI symptoms, and the whole combination has been enough that I don't feel like I am dying every minute of the day. However I am still quite unwell and hope that the new regimen I start today will help more.

I have been reading about mastocytosis and related conditions on the Mastocytosis Society of Canada website, and also at tmsforacure. It's a bit confusing so far, because the MCAD diagnosis is apparently controversial. Some doctors think that Mast Cell Activation Disorder is a separate condition, in which mast cells degranulate too easily but conventional tests for mastocytosis come back normal. However others feel that MCAD is actually indolent systemic mastocytosis that is not detected by the tests, because the tests are somehow inadequate or not sensitive enough. I have been taking the anti-histamines and sodium cromoglicate recommended and these meds do seem to be starting to help.

Hi Justin - The Mastocytosis Society of Canada has a great website with lots of info, and I think it's free to look at. I think I also have the chronic anaphalaxis that Julie describes and that you might be experiencing, and it is terrifying.

TXPOTS - I seem to do better on fish oil too, and wondered if the blood thinning effects were helping my circulation, maybe restoring some oxygen to starved cells or something. Can you tell me why this might be? Do POTS people generally have circulatory problems that can be helped with blood thinning meds? And Ashley, regarding the Advil - I have been reading mast cell stuff, and apparently people with masto have too much Prostaglandin D2 or something. I wonder if Advil would help your symptoms in the short term if this was the case for you. However, the mast doctor I saw yesterday said that NSAIDS can cause mast cell degranulation and can be dangerous for those with mast cell disorders. Apparently some doctors use low dose aspirin therapy for masto, while others think it is too risky.

Hi mirry- I am 41 and have just been diagnosed with POTS. Learning about the condition has also made me realize that I have had symptoms of dysautonomia for decades. I am being investigated for a mast cell disorder now as well. My experiences and episodes seem a lot like your description, except I don't actually pass out.