Sarah4444

I'm so glad you are doing a bit better and that you figured out you were reacting to the medication. I don't think you are a slow learner; there are just so many factors involved in trying a med and so many strange symptoms with both POTS and MCAD it's almost impossible to figure out what is causing what until it gets really severe. Thanks for continuing to post your experiences - it's so helpful to those of us who are also trying to sort this out for ourselves. Hope you continue to improve and your fingers stay oxygenated!

Does it have any side effects, drug interactions or anything else that anyone is aware of?

This sounds nuts, but I started having migraines for the first time in late 2005/early 2006, then had many a month for years, but starting this spring when my POTS got really bad, the migraines got less severe and less frequent. I did take Topamax for at least a year during this time (2007-8ish) and it seemed to help, but when my neurologist weaned me off, they didn't get worse. I wish I knew what was going on, sorry not to be of more help.

I also definitely have auditory processing issues with POTS, as well as trouble remembering what I have said out loud and what I have just thought. I also forget things a lot and it's different from day to day. I'm not taking Mestinon and it's just the "brain fog", but I have no idea whether the med could make this worse. Sorry that you and your son have to go through this.

Hope For All, did you read the anti-cancer book or try the diet? Did Dr. Grubb tell you why he recommended it for POTS patients (it looks like a healthy idea for anyone, I just wondered if it was particularly helpful for POTS). Also, and I have no idea if I'm right about this or if I'm right, but it seemed that when I was really sick avoiding gluten helped me. When I would try to eat it again, I would feel bad, get GI upset. Now that I seem to be feeling a bit better overall and improving on the MCAD meds, I can tolerate it again without obvious symptoms. I don't know what that's all about - I have read a bit about inflammation or other processes perhaps allowing inappropriate leaking of food substances from the gut. Maybe as inflammating is reduced, that is also reduced?

I have had some bad falls, and now try to be more careful (not that I was careless before) but I still stumble around quite a bit. Frustrating.

When my kids were smaller I wasn't comfortable having them wait at the bus stop alone, as it is also a couple of blocks from our home. I asked the bus to pick them up at the house, which worked when they were in JK, but then hired local kids in grades 7/8 to be their "bus buddies" and keep an eye on them on the way to and from the bus stop. This year my mother helped too. Are there any older kids in the neighbourhood who could help out?

I still have to rest, recline or lie down a lot of the time. When I "catch" really low bps it seems they are short-lived and that it returns to a more normal reading pretty quickly. I don't measure my bp often and sometimes I wonder if it is falling frequently that low and always having to pull back up. I would be so interested to wear a continous monitor for a while to see what is going on. All I know is I generally feel pretty awful.

Tilt table tests seem like a pretty limited tool to assess what is going on in dysautonomia, but it just may be the best they've come up with so far. I know the ttt allows for some control and standardization, but it doesn't really simulate anything we do in day to day life. During mine my bp stayed pretty steady I think; in real life it's often pretty low (the other day I felt awful and when I checked it was 60/45). At other times it has been a bit high, but usually it's low.

I just wanted to add that I think I have had steadily worsening orthostatic intolerance pretty much my whole life. I have a connective tissue disorder but am not obviously bendy like many with EDS - my hypermobile joints are my ankles, shoulders, spine (not the ones tested by the standard scale used to diagnose EDS by most geneticists). I had to see a geneticist who sub-specializes in connective tissue disorders to be diagnosed. I don't know how it fits together, but I think that mast cell disorder has something to do with my symptoms arising so young and getting much worse over time. With a history of allergy-like symptoms, make sure you read about MCAD at www.tmsforacure.org. I worry about both my kids, but my son seem to be unwell more frequently than my daughter. He has reflux, joint pain, trouble sleeping - I feel like he may also be slowing becoming more symptomatic but no local doctors know enough about any of my diagnoses to understand what I am talking about so I just watch and worry for now. As far as I can tell he isn't showing the 30 bpm increase (yet). Please let us know what your doctor says, and I hope your daughter is doing well.

When I had my tilt table test the admission forms asked if I had allergies to bananas and kiwis - I think it was part of their screening for latex allergies. I hope your appointment goes well - let us know what you find!

Just to add to what sugartwin said, even some geneticists have difficulty diagnosing connective tissue disorders. EDS is one of 200 that have been identified so far. If you haven't already, look at www.ednf.org, the EDS website to see if she fits, and if you think she does don't let them talk you out of your gut feeling unless you are talking to a geneticist who is a connective tissue disorder specialist. Nothing about this is simple, unfortunately.

I just noticed that my compression hose (which I haven't worn too many times) has a small tear, as though the stocking is separating from the "stay-up" thigh band. Is there any way to repair them so it doesn't get worse? I didn't buy special detergent to wash them - can people tell me how they wash theirs?

Just to add to what Julie wrote, domperidone is available in Canada by prescription - it might be available from Canadian online pharmacies? My neurologist actually prescribed some for me last month, apparently it also helps some people with dizziness. I haven't tried it yet.

I have to travel to Toronto which is about five hours away for many appointments, and this summer when I was too unwell to get up I had to cancel a few of those. I try as hard as I can to make it to my local appointments though - like Rachel I try to schedule them in the afternoon and have someone drive me if they are farther than a few minutes away. I have had some luck with calling ahead and telling them I am feeling particularly bad; at two offices I was allowed to wait lying down in an exam room, and I have conducted several appointments lying down the whole time. When it's at all possible, I think it's good to go to see doctors when we're very sick because it gives them a better picture of what this is like and adds a bit of urgency to the situation.

Can someone tell me where they buy nuun? I live in Canada and haven't seen it in stores. I did look online but it seemed quite expensive.

Like songcanary, when I read your post I wondered if you were having a food reaction. I was having episodes like you describe in the night; I didn't have the shaking, but I would have a falling feeling, wake up with severe tachycardia, shortness of breath, flusing and feeling hot, feeling wired. Now these episodes include itching but not always, and they weren't always related to something I did or ate. Now that I take 20 mg. doxepin at night they happen much less frequently, only around the beginning of my period this month. Have you looked into MCAD? My symptoms are not typically allergic at all.

I had what they thought was mono back in the late 80s, but my blood test for EBV came back positive this year. I'm pretty sure you test positive if you've ever had it or maybe even been exposed to it and fought it off. I have lots of fatigue as well, but in my case I think it's caused by POTS/MCAD.

MCAD is confusing, and I was only diagnosed last Friday so I'm still learning too. Here's an article that might help: http://hyper.ahajournals.org/cgi/content/abstract/hypertensionaha;45/3/385 I was diagnosed with a connective tissue disorder and POTS, but had some symptoms "left over" that didn't fit until I found that article. You can read about MCAD at www.tmsforacure.org. I belong to the Canadian mastocytosis society and they have lots of good info and research there too. MCAD is still a pretty vague and controversial condition, but whatever it turns out to be, I seem to have it. From what you are feeling now I was able to get some improvement by simulataneously treating POTS (fluids, salt, compression as I can tolerate it, midodrine, very light water exercise) and MCAD (anti-histamines, mast cell stabilizers - see my signature for current meds and doses). I have only been on the whole combo for a month, but as I have added each component I have felt some improvement. I still can't stand for long and my bp drops a lot in the mornings. Lots of ups and downs, but overall I feel like I am at least stabilizing, after a very long downhill spiral. Please feel free to ask anything else if I can help, and I'll try to answer to the best of my knowledge so far!

If this helps at all, I have had a cesarian with full blown POTS that was not diagnosed at the time so no special precautions were taken, and I'm still here.

Orange juice contains a decent amount of potassium I think - you could google it. Maybe diluted orange juice with salt added? I think I might try that actually, I'm not sure all this G2 is good for me at all.

That is exactly how I felt during the summer and early fall. As I have started my POTS and MCAD treatments is seems to be gradually improving, but in a variable, unpredictable way so far - I have no idea whether the improvement will last and am still substantially disabled, but it feels a lot better than the alternative. If you want any details, please let me know.

Hi Shan - I have found that my legs get very itchy when I wear compression stockings, which limits their effectiveness for me too. I don't know if it's allergy, but I have always had very sensitive skin. I try to wear them sparingly, in case it is a reaction that would increase circulating vasodilators, and kind of undermine any benefit they have.

I thought I was just imagining things. I started on Amatine/midodrine this summer in the middle of the controversy about whether it would continue to be available. Up in Canada we had a different issue that also apparently limited availability, so I was just grateful to get anything my pharmacist could get his hands on. I started with little orange pills with a flat top that were kind of crumbly and dissolved in my mouth before I could swallow them - were those the name brand? (in Canada they're called Amatine). Since then I have gotten midodrine, I think from Apotex (orange, but more smooth looking), and they don't seem to work quite as well, but there are so many variables that affect how I feel I just dismissed this feeling. Did Dr. Grubb think all the generics were less effective than the name brand?

Hi Robin - This will probably sound strange, but I have trouble drinking plain water. I don't know why, but it seems to make me feel nauseous. When trying to increase fluids I have had more luck with G2, both in terms of tolerating it and how it makes me feel. I am worried about consuming that much artificial sweetener, but am just trying to make basic improvements and will try to iron out those details in the future. I remember that some members have mentioned making home-made electrolyte drinks - those might be more palatable for your daughter. Good luck with all this.