Sarah4444

Can I ask where you get that sports drink? I am so sick of gatorade. I guess it still has artificial sweeteners though?

I can tell you what I think my anaphylactic symptoms are, but I get confused. I have so many symptoms, and there are so many things that overlap with people who have POTS but don't seems to have MCAD, so I'm not sure what's what. When I was really bad, I had pretty much complete orthostatic intolerance, and my bp would collapse/heart race very quickly many times a day (even lying down) and every time I tried to stand. I think that this extreme version of POTS for me was what Julie calls "chronic low-grade anaphylaxis" (although it wasn't really low grade at that point, it was more chronic anaphylaxis), when my sympathetic nervous system just got so overloaded trying to keep my bp up. According to that Vanderbilt article, the excessive NE and NPY may cause mast cell degranulation, theoretically leading to this severe on-going vascular collapse. Now that I am feeling better, I have times when I can be upright to some degree, but any standing still causes me difficulty - I can feel the blood drain out of my head, my legs get heavy, I can't think straight, etc. My guess is that the constant mast cell degranulation and release of things like histamine, over time causes such a strain on the sympathetic nervous system that it becomes POTS; what I think I mean is that chronic low-grade anaphylaxis eventually led my body to no longer be able to keep blood in my head (leading to all kinds of other symptoms due to cerebral hypoperfusion). The mast cell docs talk about syncope and shock, but I am not sure they are clear about how POTS may develop due to mast cell disease, and I think the chronic cerebral hypoperfusion is important for doctors to know about. However, I now also get more clearly defined anaphylactic episodes. For instance, several days last week I felt well enough to walk briskly, and each night on those days I had episodes of dramatic flushing, tachycardia (supine), shortness of breath and difficulty swallowing - sometimes with itchiness and sudden diarrhea. It sort of feels like a dramatic and unpleasant amplification of what's going on in my body all the time, though. I have wondered if I tend to get these episodes at 11:30 PMish now because my midodrine has worn off and/or when I lie down, my NE levels go down. My catecholamine levels from my TTT showed that my NE and epinephrine/adrenaline levels are low when I am supine and incredibly high after 10 minutes tilted - it's almost like when I am standing I am getting a constant shot from an epi-pen, which dampens down any anaphylaxis that might be going on, but when I lie down and my NE and adrenaline decrease, the anaphylaxis "breaks though". I have no idea if any of this is right, it's just my theory of what's happening. It sounds silly, but I think I am having some degree of anaphylaxis all the time. When I was very ill it was 7-8 out of 10 all day, with episodes of 9.9 at night (where I'd end up in the ER). Now it's more like 4-6 out of ten on and off during the day, with occasional 9/10 if I overdo it. Things that seem to trigger a worsening of my symptoms include standing too long (or even sitting too long), concentrating, heat/showering or rapid temp changes, eating, stress, alcohol, hormone changes (esp the first two days of my period) and exercise in a vertical position (and any combination of these). Some foods also may be contributing, especially gluten. And although the dramatic anaphylactic episodes tend to happen at night, the orthostatic intolerance is worst in the mornings. Now this doesn't explain the fact that I also have a hereditary connective tissue disorder like EDS and that a large proportion of EDS people also have POTS. Either I have two sources of POTS, or it's all somehow the same thing for me. Also, I have things like pain, fatigue, brain fog, etc. that could be related to any or all of these issues. I don't know if this makes sense, but hope it helps a bit.

Nowwhat, I have the same problem with drinking and nausea. If I try to drink large amounts of anything except G2 I get nauseous so easily. But I am so sick of G2 and don't normally consume artificial sweeteners. Don't know what to do. Do you know if nausea with drinking is common, or is a POTS thing?

I remember that in one of Dr. Grubb's article he does mention that POTS can be the presenting form of some cancers, but I think that's pretty rare. It can also be associated with Autoimmune Autonomic Neuropathy, which is often a neoplastic disorder (meaning it comes along with cancer I think). Hope this helps.

Hi Jodie. I do - the dermatologist I see says they are Dermatographic and Cholinergic Urticaria. I get very flushed and splotchy if I am stressed, emotional or warm (and in many other circumstances too). For me it seems to be part of Mast Cell Activation Disorder. If you haven't looked into that, a good place to start is the article "Hyperadrenergic POTS in Mast Cell Activation Disorder" (Shibao et al, 2005), and then you can get more info about MCAD from www.tmsforacure.org.

Hey Tennille- I was really disabled by nausea for a long time, but now it's much better. I am pretty sure that Zantac and Nalcrom/Gastrocrom are helping the most with this symptom.

I also wanted to add a note about Cymbalta. I started it in Feb of last year, a pretty high dose for pain (before I know I had POTS), and it helped with pain for a bit but after a few months made POTS much worse (too much NE I imagine). I hope it doesn't do that for your son. I think that Nalcrom/Gastrocrom has been helping me a lot with nausea, along with the anti-histamines - it seems to be viewed as a pretty safe drug.

I think that hormone levels are closely tied with POTS somehow - my symptoms definitely change at different points in my cycle (it's one of the only predictable things about my life - knowing when I'll for sure feel worse than usual). I also got really bad during my second pregnancy. I have been wondering about this - I did ok during my first pregnancy but much worse during the second - I wonder if there is some kind of cumulative effect and whether other women have found this, or if it's more random.

I know how you feel, I have not been able to work since 2008 and am in the process of trying to contest my appeal for LTD, which was denied. It is so hard to fight this when we are so sick. I have not had a lawyer up to this point, because I was also told that almost everyone is denied at first - my union is looking into whether one of their lawyers will help, but if not I have pretty much resigned myself to trying to find one who will work on contingency. We have also had to borrow a lot from the bank over the last few years, with the expectation of being able to repay it once disability was approved. Friends and family members keep saying "well since you're this sick you must be eligible for disability" (and I would have thought that myself when I was still healthier). People don't realize how punitive these systems are, how hard it is to apply with a rare disease, and how exhausting the whole process is. Doctors keep telling me that with H POTS I have to minimize stress in my life - I wish they would tell that to the LTD people.

I am unable to remain upright all day without lying down to rest and get blood back in my head on and off throughout the day, and some days I feel quite unwell and have to lie down quite a bit. I take the midodrine at regular intervals and check my blood pressure once in a while. I haven't seen any evidence of supine hypertension yet, and without it, it's harder on me when I do manage to get up and move around. When doctors say not to lie down, I'm not sure they really appreciate the realities of having POTS.

This happens to me too, and I drive myself nuts trying to figure out why. While I can take meds, control my diet, etc. there are factors to this that are beyond my control. I have to keep remembering that the relapses pass and that I'll be feeling better again before too long. It can get very discouraging - seems like 3 steps forward and 2.9 steps back, but at least overall it seems like it's going in the right direction. Hang in there.

Thanks for that info, mwise.

Just wanted to add that I had the same experience with the holter - heart rate all over the place just from standing up and walking to the bathroom, but they don't believe it.

Exercise and exertion seem to trigger my MCAD episodes (anaphylaxis), particularly when I try to exercise standing up. Brye, can you tell me what kind of recumbent bike you have? Do you like it?

I saw Dr. Carlos Morillo in Hamilton, and it was his autonomic lab that diagnosed me. He seems like a nice man, but I have mainly been treated by his students so far. I don't know if he sees children at 12, but it might be worth calling his office to see if they can recommend anyone. At least they know what you mean when you talk about autonomic issues. His secretary seems a little disorganized though. Another idea would be to call the Hospital for Sick Children in Toronto to see if anyone there could recommend somewhere to go in BC? It's an awfully long trip for you if you have to come all the way to Ontario. I really hope you get some answers soon.

Hi Victoria- So glad to hear your surgery went well and hope you feel better soon. I have hyperadrenergic POTS (confirmed by TTT and catecholamines) but mainly have low blood pressure, with only the occasional reading that was somewhat elevated (150/110ish) while sitting. I take midodrine which helps a bit, but did try Florinef initially. While I was taking it my anaphylaxis episodes seemed to worsen, so I ended up discontinuing it. I was probably on it for about a month-6weeks. I have considered trying it again, but am trying to get my MCAD med dosages adjusted first, to see if that will provide enough relief. I'd be interested to know what you decide about Florinef. With regard to stopping the anti-histamines, I can understand why you are worried. I would be very hesitant to stop mine unless I was medically supervised. Also, my pharmacist warned me that once you start taking them you have to taper off, as people develop neural hypersensitivity to histamines while taking these meds. But I also understand why you want to be as symptomatic as possible - it's hard to describe how severe the symptoms are if the doctors don't see them. Let's see what Julie has to say on this one.

I'm sorry to hear about the trouble your son has been having. Where are you in Canada?

mwise, can you tell me what the Mestinon does to improve on the effects of the midodrine for you?

I have been avoiding gluten since last fall, and it does seem to help me, particularly with brain fog and GI symptoms. I had antibody tests done and they were within the reference range, but I was already avoiding gluten by the time the bloodwork was done.

Midodrine, in combination with the MCAD meds listed below does help me. Not enough, but it's better than nothing. I take 10 mg every four hours (or less) and then 5 mg at 7 PM. I didn't really start to do better though, until I added the anti-histamines, etc.

"There is a lot of frustration in not having validation," Raj said. Understatment of the century. Thanks for posting this.

It happens all the time for me too, sometimes with itching and sometimes without. I think it's a flare up of what's going on all the time and causing POTS, what Julie calls "chronic low-grade anaphylaxis". Sometimes it just tips over into a more severe reaction, due to a certain trigger or accumulation of triggers. When I have flare ups like that Benedryl helps (on top of my other MCAD meds).

Christy, I was extremely nauseaous, but once I started taking H1 and H2 blockers (Reactine/Zyrtec and Zantac) along with the other meds listed below, it has really improved. In my case, it seems to be mast cell related. I suspect that Zantac and Nalcrom/Gastrocrom are the meds that help my nausea most. Good luck to you both.

I had severe daily nausea for well over a year, until I started the MCAD meds.

I suspect it's the medication, but in any case I really hope it continues! Keep us posted.