Frugalmama

I found they made me very ill within minutes of putting them on! I think, though, that it's due to a mast cell flare due to the pressure.

Northerndarlene, I tried to PM you, but can't! Is your mailbox full?

I have the wrist and neck wraps from this company. I'd definitely recommend sewing on the "missing" side of velcro on the wrist wraps - mine only stayed on for a couple of weeks since the fabric could no longer catch the velcro. As well, I found that a polyester sleeve was necessary around the wrist ice packs, otherwise the condensation on the part against my wrist was burning my skin (and it wasn't just my sensitive skin...my tough hubby found it very painful, too . But overall, I found the wrist packs were fantastic, and bought me a little more time that I could be out!!

As others have said, it is so important to remember that we know we're not crazy . My doctors have always thought I was strange, because the treatment for each diagnosis I've had hasn't worked. I was misdiagnosed as Celiac, diagnosed with IBS (and not one of the IBS meds made a dent in my symptoms), diagnosed with POTS, but had absolutely no positive effect from beta blockers, salt, or midodrine, etc. Turns out now that I have indicators of mast cell disease, and we are persuing treatment along those lines. So it wasn't that I don't have IBS or POTS, but the treatments don't help because they're caused by an underlying condition. As jennglynn mentioned, I think it's so important to pursue a definitive diagnosis because this can run in families...my mother has almost identical symptoms to me, and my maternal grandmother, aunt and sister all have minor symptoms. So, I want to be prepared if one of my children becomes symptomatic

I think this might depend on the severity of your symptoms? I have almost constant presyncope, but I have no doubt that when I get that "I need to sit/lie down right NOW" feeling, if I continued to stay upright, I'd hit the turf. I've had many close calls where I've "greyed out", and just barely made it to the floor on my own....the scariest one was when I was carrying our youngest as a newborn. But, if you don't pass out, exercise is a good thing, in moderation . Maybe stick to a shorter time walking around and see how that goes?

It's an interesting poll! My cardio said that she hasn't seen a correlation between the "severity" of the tachycardia and severity of symptoms. My HR only jumps to the mid 120's, but I'm only able to get out of the house 1-2 times per week (and that's almost always if someone is with me), and only on a very good day can I sweep the floor, or empty the dishwasher, etc. i'm interested in hearing other's responses

I have major issues with this. I have difficulty even running into a store by myself because I become disoriented and I'll forget what I'm supposed to be doing or how to pay. I especially find my decision-making is impaired while standig. I will literally freeze at a store if I have to decide between two options - say, between two flavours of granola bars. I'll just stand there and stare. It's really bizarre, because I was definitely never like this before, and I have major word issues, and I constantly forget things...like asking my husband the same question three times within a couple of minutes.

I think I might be one of those people i've been having POTS symptoms acutely for almost four years, but I've had two negative TTTs. The weird part is that those are the only times that I was not symptomatic...I have symptoms every time I stand. So I started trying to figure what was different about those particular times, and it was a scent-free environment, extremely cold, and I had been fasting. I realized that scents/chemicals, food/eating and even a moderate heat are my three biggest triggers, and that maybe it was those other things combined with standing that was actually the problem. I'm in the midst of trying to get diagnosed with MCAS right now....it would certainly explain the weird health problems I've had for the past 15 years . I'm also don't experience full-blown anaphylaxis, so I originally thought it didn't apply to me. Turns out most of symptoms actually do indicate anaphylaxis...who knew? Futurehope, I hope the appointment goes incredibly well for you! I look forward to hearing about what you learn from him!

I was not able to, but I am in Canada, so things might be different! I experienced the exact same frustration with the holter! It came back "normal", even though my average heart rate over the 48 hour period (including two nights of sleeping plus numerous naps) was 99. My awesome GP saw that and said, "i'm not positive what normal is for this, but that's definitely way too high". I think the problem I ran into was that my cardiologist wanted nothing to do with me since there is technically nothing wrong with my heart. She really didn't care that I was having big spikes, because she couldn't "fix it". Good luck, though - maybe in the US you can access more of the records since the system is different!

I started crocheting last year, and it has been wonderful! There are many days when my only accomplishment is crocheting a hat...but at least I have something to show for my day! I like it because I don't have to think...my fingers just do it . It's bren very therapeutic to find something that I'm capable of doing in the condition I am in.

Yup, is me too! I explained it to my husband as a light switch - I'm either extremely hot and heading towards blacking out, or I'm completely frozen. I can't cool off or warm up on my own, and need to use cold packs and/or a heat pack or warm bath. I have dreams of one day becoming a "dimmer switch"

Wow, great run down, doozlygirl! I'm in the process of diagnosismfor MCAS as well, and it's been very interesting to delve into this . I think the biggest surprise for me was learning what anaphylaxis actually is. I always assumed it meant full-on swelling and lack of breathing, but it looks like my symptoms are almost identical to yours. Why is it that doctors don't recognize that constellation of symptoms as anaphylaxis? So strange! I actually started really looking into MCAS when two of my TTTs came back negative for POTSand one borderline...which is really weird because "in real life", I react every time I stand up for longer than a couple of minutes. I realized the only difference at the TTT is that it's a scent-free environment that is extremely cold, and I had to fast for the test. Chemicals, heat, and eating are huge triggers for me. The Mastocytosis Society of Canada is working with doctors to try to come up with a consensus document which would aid physicians in diagnosis and treatment of mast cell related illnesses. I'm really looking forward to this, as I don't think my immunologist knows what MCAS is (although she is familiar with mastocytosis, so that's a great start!). This forum is also an awesome resource for information - I've learned a lot from going back through the forum and reading the mast cell related threads

I have suffered with migraines for 15 years or so, and usually react very strongly to meds, but I went up to 10mg 3x day of Midodrine, and with the exception of the tingling/shivers, it had absolutely no effect on me (positive or negative...actually nothing). It's so strange that so many folks have such issues with it, and others have none at all!

Chaos, I seem to remember reading something along those lines, too....speculation that perhaps it's the oddities in our nervous systems that cause us to push to 110% all the time. Sorry, I really can't remember where I read it, but it suggested that before getting really sick, we might get little adrenaline highs that we keep seeking after because we crash in between them...so if we get adrenaline surge after surge after surge, we can avoid the crash...until it take us out completely.

I had been symptomatic for months when I stumbled upon the mystery diagnosis show about OI. From there we narrowed down to POTS and found DINET, and are now looking into MCAD as well. This forum has been life-changing!

I've actually been experiencing this for the last five days. It came out of nowhere, and my mouth gets so dry!! Please let us know if you come up with anything!

Sorry I missed your question, anaphylaxing! I have a weird presentation of this weird illness . I have POTS symptoms 99% of the time I stand for more than about 3-5 minutes. Thankfully I haven't passed out, as I do get a few seconds warning that things are really heading south, and I have greyed out before. But, before I get the tachycardia, I experience the following....nausea, shaking, flushing, getting REALLY warm, extreme weakness, extreme brain fog (I literally can't make even simple decisions), etc. I've now had three TTTs, and my HR only went up on one of them (and even then didn't have a full reaction). I'm stumped! The only reason I can get out of the house once or twice a week is because my awesome hubby babysits me...I'm very symptomatic all the time, and we have full-time help here at home to take care of my three little ones. So sick, and yet crappy TTT results. I am headed to an immunologist on the 13th for allergy testing and to chat with her about MCAS. Apparently she is familiar with Masto, although I'm not sure about MCAD. I guess I'm wondering if MCAD could be causing all of this, because the only thing that is different at the tests than in "real life" is the fact that they are scent and allergen free environments, and they require fasting (scents, chemicals and eating trigger me every time). Thankfully, no anaphylaxis here, but I seem to fit the "leaker" symptoms to a tee. Is it possible to have a masto reaction just to standing? Any thoughts from all you pros would be awesome . What a confusing set of symptoms! Thankfully my GP is awesome, but he really is just trusting my research as we move along. Thank you all for sharing your experiences...it helps put the puzzle pieces together!

I swing back and forth. I often have to force myself to drink (which makes me very nauseated), but for example, the past couple of days I've been so thirsty it feels like I haven't had anything to drink for a week.

I started having acute symptoms during my second pregnancy. My symptoms didn't get better with pregnancy, and my second and third children (both boys) were 8 lbs 13oz and 8lbs 10 oz. Except for the general misery caused by crazy POTS symptoms, my pregnancies were all very healthy and normal with non-eventful births. As well, my BP stayed at 90/60 (or sometimes 80/50) throughout all of my pregnancies.

Mine ache and feel very "full" and I feel like I can't keep them still. Jtonight my husband told me to sit down because my legs looked like Barney. It is shocking how dark purple they can get

Please correct me if I'm wrong, but didn't that study only look at people who were pretty healthy? I can't imagine anyone disabled signing up for the army . Not to negate their results, I just mean that maybe those of us who are very ill might need to start slower?

Maybe it would depend on the person? I spent some time in Saipan (which I think is pretty similar weather-wise to Hawaii), and the heat just about killed me. Plus air conditioning was extremely difficult to come by. I live in Winnipeg, and am in love with spring and fall Our summers are generally pretty hot, and I literally spend all my time in air conditioning....I can't even spend time in places that don't have it. Anyways, to make a long story short - do places in Hawaii have air conditioning?

I love to read with my kids, and snuggle them while doing so . My hubby and I love a good reno project, and my hands-on involvement has changed to doing research beforehand and encouraging while he does it . I also make kids accessories and sell them for a bit of extra money - the creative process has definitely kept me sane over the past couple of years!

I didn't actually work in health care, but was studying at university to go into medicine. I think there was a post here before along these lines, and someone thought maybe the high diagnostic rate was due to the fact that people studying sciences know how to find and interpret information, plus may be more likely to stand up for themselves and find a diagnosis.

I am the same way as you, Katybug . I can easily lose 3 pounds in one day if I'm having a bad GI day, but as soon as my stomach gets under control, I put on weight really fast and I'm always starving, That being said, I don't notice a difference on my symptoms as my weight changes. I am 5'9", and until I got married, my weight was about 120 pounds - and was extremly symptomatic. I had three pregnancies in three and a half years, and gained and lost 40 pounds each time, and didn't see a change at all in my symptoms.