Sarah4444

Thanks so much for that info. I haven't tried avoiding dairy yet (I'll miss cheese!). I have never had any kind of allergies (except perhaps to myself?) so it has taken me a while to figure this element out. I live in a mining town in Northern Canada - not too many alternative medecine types up here.

For anyone interested, there is a lot of good info about MCAD/S and POTS on the Mastocytosis Society of Canada website. You don't have to be Canadian or pay to join, it's just meant to support and inform people. I find it to be a really good resource and place to find articles.

I am one of the people fighting to get as far with this as I can, but it's not easy. However I do have the advantage that my medical appointments are paid for by universal health insurance (but not all the travel). The disadvantage is that for a variety of reasons, many of the top experts in these fields are in the US, and I have to either see them or wait for info to trickle down the research chain. I need to get better at balance my quest with looking after myself, but in a way these two things also inextricably linked.

Let us know what happens - I hope you get some relief, or at least nothing negative!

I also do better without gluten (wish I knew why!), and can only swim for exercise. I did have lots of breathing problems but they have improved since I gradually increased from 2 to 20 minutes a day of gentle swimming. I wouldn't be able to even do that without the MCAD meds, though.

This is an interesting thread. From what I can gather, according to Dr. Raj NE levels over 600 mean POTS, and over 1000 qualify as hyperadrenergic POTS. Mine were taken as TXPOTS described in an autonomic lab up here in Canada that was recommended by Dr. Raj. My supine NE after resting quietly for a while was abnormally low, but after ten minutes of tilt it was nearly 1700 - they decided I am hyperadrenergic POTS, but I don't seen to have high blood pressure. I can't remember the exact numbers right now, but my adrenaline levels after the 10 min were 26 times the upper level of normal (no wonder I feel weird sometimes). It seems important to remember how different we are in some ways, and I really appreciate it when people share things like this. I keep feeling guilty about having not cured myself by being active, but maybe what works for one person or group of us may not work the same/as well for others (although exercise overall seems to be helping, despite the fact that after each exercise session I get sicker).

Hi Lynne- I take 10 mg midodrine three times a day then 5 mg in the evening. Before starting I had had a couple of higher reading (150/100ish) when sitting, but this hasn't gotten any worse since I started taking midodrine. Most of the time I have low bps. Don't know if this helps at all since we all seem to react differently to things. I have also wondered if some people increase their dose prn when they have to stand for a while, because even on 10 mg every 4 hours I run into a lot of difficulty. Let us know what you decide and how it works.

Keep in mind that many mastocytosis specialists seem to feel that tryptase can be a very unreliable test, and that there is at least one kind of mastocytosis (bone marrow) in which the tryptase results are typically low. So a normal tryptase result is not really a clear indication of what is/isn't going on - the masto world seems even more undefined/controversial than POTS at this point.

You can buy a variety of ones online from Ames Walker. I got two kinds of black sheer ones that weren't as bad as the ones ordered by my pharmacy - one was the Ames Walker brand and the other was a sheer kind from Sigvarus. They don't help me much though.

Sorry that things continue to be so difficult, Tennille. I was so disappointed for you that your Vanderbilt appointment didn't turn out to be helpful. What symptoms did he accuse you of lying about? It makes me wonder if some of them might have been mast cell related - some of the things that people on the mast cell sites report do sound kind of strange. If you have time, it might make you feel better to go to a masto forum and read some of the stories and symptoms. I hope that once things settle down a bit your husband comes to his senses. You don't deserve to be treated poorly.

This sounds kind of crazy (I feel like I should preface all my symptom descriptions this way) but when I was taking 5 mg four times a day I got the tingly scalp and all that, but when my dose was doubled the strangest thing happened. I have never had a phobia of any kind, but now if I even look at someone standing in a very high place, or think of being somewhere high, I feel very strange and anxious. It's like an exaggerated fear of heights which I have never experienced before, and it started almost right after increasing the midodrine. I am still taking the med, but do have a real slump between doses if I wait the full 4 hours; the height thing doesn't really affect me, it's just so odd.

I wish I had some definitive answers for you, Victoria. All I can say is that I also have lots of pain and I think it is related to staying still/blood pooling somehow. For me it's worst with sitting. I have to carefully balance staying still and moving all day long to minimize pain - swimming seems to be helping too. I also used to wake every night at 3:30-4 and have trouble getting back to sleep - for me it seemed to be bp falls/anaphylactoid episodes. Whatever it was, I have stopped having this problem after starting doxepin 20 mg before bed. Eating continues to be a challenge. I have read that eating can exacerbate POTS symptoms by drawing blood to the abdomen, but for me I think it's a combination of that and reacting to some foods I eat. Nalcrom (taken 20 min before eating) seems to help - to learn more about that issue, I would suggest looking at the Mastocytosis Society of Canada website (it's free to join). A lot of people there are far more knowledgeable than I am about food issues and mast cell reactions. My tilt table test involved measuring catecholamine levels (norepinephrine and epinephrine) and it was extremely high levels of those that led to the hyperadrenergic diagnosis. I was taking Remeron 15 mg for a couple of years as I got sicker, before I knew I had POTS. I discontinued it because they wanted me off meds to figure out why I was getting so sick. I think with any drugs that block re-uptake of neurotransmitters, a little seems to help some people, but too high a dose seems to cause problems. I prefer doxepin at night at this point, and it was recommended by the doctor I see who is familiar with mastocytosis. With regard to your neuropathy, all I can tell you is I have had blood work done for autoimmune autonomic neuropathy but I don't know the results yet. Apparently something like 10% of POTS patients have anti-ganglionic antibodies, but I don't know if they know the implications of this yet. Hope some of this helps a bit, anyway. So glad to hear you have been doing a bit better! I followed the same pattern, and continued to improve after adding doxepin and Nalcrom.

Hi there- I saw a dermatologist who was familiar with cutaneous mastocytosis (I only have dermatographia), and he ran a tryptase test for me. He tried to order the urine methylhistamine, but it isn't available where I live. I think a hematologist or immunologist might be the right person, but if you could find one familiar with mastocytosis that would probably be best. From what I have read so far on masto forums, that can be hard to do. Let us know what happens, and sorry I can't be more helpful at this point.

Welcome, Alison. I just wanted to let you know that with my severe POTS/MCAD symptoms, I have also had an itchy rash on my upper arms, as well as a rash around my mouth at times. Not sure what the cause is exactly, but they have improved. Keep us posted, and I'm glad to hear you're finding some treatment options.

I just wanted to ask if you have read at all about mast cell disorders. I seem to have one along with my POTS, and from what I have read they sometimes occur at the same time as other blood disorders. I also have a family history of young women with lymphoma. Sorry for all you and your family have had to endure, and for having to be separated from your baby. That's just awful and I really hope things improve soon!

It makes you feel like you're some sort of plague rat, doesn't it? I call myself the hot potato patient; I think I behave myself, but I have run into that kind of attitude as well (although nobody has been rude and dismissive enough to actually fire me as a patient, they just act like such jerks that there's no point). Doctors really don't want to deal with our level of complexity, and they have trouble tolerating the ambiguity and strangeness of our symtoms. My only advice is to keep trying - I have had to do most of my learning and treatment planning myself, with the help of people like those here. Don't give up. Doctors shouldn't be able to take the easy way out like that - it's far from good medicine. And it's hard to keep fighting after so many years of illness; try to rest and then get back on the horse and try again. Sorry this happened to you.

I agree with mkoven, I am not sure there is a benign joint mobiliy disorder that is related to POTS. There do seem to be some hypermobile people out there without all the troubles we have, but I think that those of us with POTS and hypermobility probably share some kind of connective tissue disorder that is far from benign. I know what you mean about feeling like you already have enought to worry about, but I think it's all connected - in my case, including the mast cell dysfunction. The more of us who see the same doctors with the same symptoms and history, the sooner the doctors will start to figure this out.

Another me too - especially the flushing, etc. I also have light brown spots, but apparently not UP. My arm looks an awful lot like the photo on the link above of "diffuse cutaneous mastocytosis". Had a bad anaphylactoid episode last night and another tryptase test today. It'll be interesting to see if anything shows up this time. I'd also like to hear how things go, Victoria. With Julie's med advice I have had a lot of improvement in the severity of my symptoms - hope it works for you too.

I worry too. I see bits and pieces of this in my kids - joint pain, reflux, occasional hives, flushing, etc. Nothing serious (yet) but I am concerned for the future and hope they make some headway quickly in terms of research, diagnosis and treatment, in case things get bad for them.

This is really interesting. It makes me wonder if MCAD could be some combination of something causing mast cells to degranulate too easily with triggers such as stress, smells, foods, etc. and then also an impaired histamine metabolism?

Is there any way to see a copy or description of Dr. Levine's exercise regimen?

I just wanted to agree with this strongly. I have always known that exercising helps me function at my best, but within the last ten years, whatever illness in underlying all this got worse to the point that I was unable to exercise. I kept trying to change what I did for exercise to accomodate my decreasing ability levels, to the point of installing a salt water exercise pool in my garage, but I couldn't get my body to work well enough to use it - my arms and legs would stop working and I would just sink. Actually, when I think about it my ability to exercise has been wearing down for a very long time. AFTER finding out about POTS and MCAD and starting the meds for them, I was able to start swimming two minutes a day but it was a struggle (this was last summer/fall). By the end of the two minutes my limbs would stop working and I would feel terrible after each session. But I was so deconditioned I couldn't stand it so I have tried to persevere. Now I can swim (it's not vigorous and I wear a float belt to take stress of my back) for 20 minutes a day, and I usually feel less terrible after than I did before. I still have to watch my pain levels and rest aftewards though - it's a delicate balance. Overall, I feel much better than I did last fall when I was in what Julie aptly describes as a state of "chronic low grade anaphylaxis", which for me seems to either be the same as or coincide with very severe POTS. However, I am still severely disabled by orthostatic intolerance - just not feeling like dying all the time. I do hope that things improve, but my impression is that this illness has been there all along and when I was healthier and able to exercise I have done my best. I am hoping that if I am able to continue swimming, I will then be able to withstand dry-land training again. Now, when I try to walk about 1/2 mile, often by the end I am almost passing out and my vision is tunneling. I hope if I can keep trying, I will also get better with this too. But, even if I can manage some exercise and increase my sense of well-being and fitness level, the illness will still be there, making everything a struggle. That is what bothers me about the Grinch article - it's not trying to address why I feel like this in the first place and what could be done to help, but putting all the responsibility for recovery (and, it feels like, for being ill in the first place) on me. There is enough of the "blame the patient" happening to POTS patients already and I don't feel these authors took this into account when deciding on the somewhat flippant tone of their article. It reinforces the idea that this isn't really so bad, not such a big fuss and adds barriers to us receiving the diagnoses and care we deserve and require.

What I read was more of a short article he wrote in response to the "Grinch Syndrome" article, an editorial kind of thing. I'll search around and see if I can locate it - I have read so many things I lose track.

I'm so sorry about your job and insurance, that's just so awful and unfair. As if this wasn't hard enough.

It is all so frustrating. Do you have to choose or could you see what both docs have to say next? I'm a bit confused about the salt too - I have hyper POTS based on very high catecholamine levels during TTT, but so far have mostly low bp issues. I tend to salt my food generously and eat salty snacks, but didn't feel well when I tried salt tabs - apparently they can draw fluid to the abdomen and make things worse? Glad you tolerated your TTT (i.e. didn't die). I think sometimes they forget we are actually people, and that we have to go on living with this even after we leave the lab or appointment. They don't really understand what it feels like (except maybe a couple of the real experts like Dr. Grubb and the Vanderbilt guys, who keep emphasizing in their articles how disabling this is - hope their message eventually soaks in).