Katybug

Oh Jen, you have been through more in two weeks than most people go through in a lifetime. I think what you are feeling emotionally is quite normal. I also hope that the IVIg starts to help in the end. I continue to think good thoughts for you and your family.

JWPotsMom, I was looking up info on MCAD treatment and came across this list of drug classes to treat nausea in people with MCAD. I thought you might want it in case one of these might end up working for your son even if he doesn't have mast cell issues. I'll include the list and I'll also include the link to the entire website I was viewing. Nausea⇒ metoclopramide; dimenhydrinate; 5-HT3 receptor inhibitors; icatibant (from Table 5 in the link below) http://www.jhoonline.org/content/4/1/10

alicia, I, too, am sorry you are not getting the support you need. As Naomi said, I can't offer better advice than what has already been given, but, know you have friends here. Julie, You really do give the best cyber-hugs I've ever seen. You are so kind and so eloquent.

I overdid it at breakfast and (apparently I'm a slow learner ) overdid it again at dinner! It was a wonderful and an awful day all at the same time. I'm so careful not to overdo the food cause it makes me so sick but I just threw caution to the wind and ate what I wanted. You're right, Libby, it wa nice while it lasted.

I do get some good effects from it but I have to be careful. If I feel like I'm having blood pooling but not a lot of adrenaline surges in the morning, then I can have a cup (only one cup) and it makes me feel better and allows me to leave the house for a couple of hours. If I'm not sure sometimes I do 1/2 caff and that helps too. If I am having adrenaline surges then it makes me too shaky. It also has the effect of helping me sleep sometimes when I can't get my body calmed down...weird, right? If its after midmight and I'm still not asleep and having surges, I will dink a cup of coffe and it usually has me asleep in 1/2 hour. Can't explain it but I know someone else on the forum said it does that for them too. Like many of the other respondents I had to use trial and error to see under which circumstances it helped and which it made worse.

I was thinking after my last post...you say you had various procedures...did you have a spinal tap(lumbar puncture) somewhere along the line? Sometimes having one of these can cause leakage of spinal fluid which can cause pretty severe pain.

I agree with Julie that while I do get chills and brain fog from my POTS, the spine pain sounds like something different and possibly serious. If it was me, I would pursue a better answer for that particular pain. Hope you feel better soon and get some answers.

Thanks Jana!

Chaos, Thanks for that. I never would have even considered that to be a problem. Katie

jangle, I understand your worry because when I first learned I had POTS this thought crossed my mind. Actually, it had crossed my mind well before my dx because I often feel like I have brain damage. But, as I got more used to having this disorder, I have been able to calm some of my fears and take some things with a grain of salt. Keep in mind that our cerebral perfusion is only occuring when we are upright (and for some of us not all the time we are upright just some of the time). SO, that means we can help ourselves by laying down if we feel that we are too far gone at any given time. That being said, most of us are also living proof that our brains have do a built in mechanism to make us faint if it's not getting enough oxygen as the docsw have said. One of the things I do to make myself feel better about this is to do the kinds of things they tell middle aged people to do to avoid getting Alzheimer's/Dementia, such as cross-word puzzles, manual math calcs, word searches, word scrambles, memory games, etc. Plus, these are a great way to fill time when you can't get out of bed on bad POTS days.

I haven't tried Tai Chi but have interest. I have been trying to find an upright exercise I think I can do besides just walking which gets boring. Tai Chi might just be a good option I hadn't thought of! And, yes, I agree that medical science is behind the times on using these methods to treat and also to look at research avenues. Thanks for the great thought!

Thanks, Ladies!!

I don't think its weird at all to think your body reacts badly to your own hormones. All of my symptoms, from whatever disease we end up calling it, were worse when I would get my period and even on Nuvaring (which contains estrogen). I talked to my Ob/Gyn and told her that unless she had a really good reason I wanted to go back on DepoProvera shots...no periods and no estrogen with that. I felt a change in my body (for the better) within 3 days of getting my 1st shot.

As another argument for being fit and having POTS at the same time... I had to stop working because of then undiagnosed POTS November of last year. In Feb, I had to have an exercise stress test before my insurance company would approve my first TTT. I went in for the test and was able to jog the last 1/3 of the test at a very steep incline. The techs were like, "Why are you here?" and then the test ended and they stopped the treadmill. One of the techs luckily caught me as I started to fall to the ground immediately after the treadmill stopped. My heart rate had hit a top rate of 165 (resting had been about 70) but it would not come back down and my blood just doesn't stay where it's supposed to if I'm not moving constantly. I was very fit...in fact they tried to make the test more difficult to get my heart rate even higher and it just wasn't happening. But it also wouldn't recover until they laid me completely flat.

jangle, I have used this as part of a meditation and it does help. I also wonder if part of the mechanism is that tensing and relaxing the muscles helps to keep the circulation distributed throughout your body and therefore helps normalize BP and HR. Have no proof...just speculating.

HI Ladies, I have a couple of things for you: 1) I have a young lady that I taught horseback riding to until last yr when I got sick who is now in a special Masters Pre-Med program at Tufts U. She says that they having been being taught quite a bit about mast cell disorders and EDS. I was actually surprised to hear how extensively they have covered these topics. I bring it up only to maybe add some hope to our plight that we may have a younger generation of doctors coming that are much more knowledgeable about these issues and will help bring fresh eyes and energized spirit to the hunt for answers. She is actually going to do her Masters thesis in Immunology becuase she finds me and my ailments so curious. I just think it's really pretty cool that they are teaching about it. 2) I have a question for you. I just started with an Immunologist 2 weeks ago. I gave him 65 pages of labs and docs notes from this yr and he was pretty open minded that there is something wrong. He said he didn't want to focus on MCAD because he might miss something else. He started by doing allergy testing for environmental allergens which was a short test cause I am really allergic to the world - literally! Anyway, he also sent me for same day blood work for lots of things...11 viles of blood. Here's what it comes down to...if he can't find anything and tries to sell me on allergy shots I really feel like that would not be a good option. (I had allergy shots as a teenager and had a very bad reaction that ended in 3 months of high dose steroids and antihistamines.) Also, it seems to me from my understanding of MCAD (which I have almost every feature of) that allergy shots could be counter-productive and I might have another bad reaction. Do you have any knowledge of how allergy shots may or may not work in an MCAD patient? Are they contraindicated? It's all so complicated. Thanks, Katie

Me too, Sue. I have become light, sound, and smell sensitive. My stepfather is going deaf and he turns the TV up so loud I have to leave the room cause it sets me off. My favorite is when he decides to watch WWII movies and there's all the gun shots and artillery explosions. It makes me want to throw the TV out of the window (and I can cause of all the adrenaline coursing through my body)! And I can actually hear some tones of dog whistles now. I try not to share that with anyone but my POTS friends.

One of the things you said stuck out to me about your tryptase test vs. what the docs said in the videos. If I am correct, these docs said you have to take a baseline tryptase (when the person is not acutely symptomatic) and then catch one within 4 hrs. of an acute attack and compare the two results for each individual. It doesn't sound like that's how your doc used the test. I wonder if you can find a protocol for this that you can give to your doc?

Rama, Maybe seeing an immunologist would be a good option if you think there could be an immune component to your symptoms. I also wanted to 2nd or 3rd the sentiment that you have always been a wealth of knowledge and comfort here and would like to return the favor in any way I can. Just let me know... Katie

Rama, That's an interesting theory. My BP used to consistently be 90/60ish and now I'm up around 108/72ish and my nausea/vomiting hasn't been bothering me since around the time I started getting these higher readings. (You know, superstition says I should not have written that down for others to see as I'll probably throw up later tonight! ) But, on a more serious note, I wonder if the consistent increase in my BP is the key to this particular issue?? I hadn't put the two together before. Thanks for that! Katie

Thanks folks! I feel like I have to take tiny breaths when I get these cramps or the cramps get worse. And, YES, to Todd's description of how it feels. It's really pretty bad when it happens. I am also wondering if there is a problem with my hiatal hernia. When I was scoped last year by the GI, he found it but said it was too small to worry about operating at that point. I have an appointment to see a Rheumy in early Feb. because I have many features of possibly having a connective tissue disorder (the hernia being one of the features). I'm wondering if I should get this checked out.........hmmmm........I'm just so sick of being poked and prodded............

I found it... "Mood/Temper Swings?? Is this normal for POTS?"

dizzyblonde, I posted this same thing a few months ago but its always good to talk about it again. I got so many responses I was amazed. I yelled at my mom the day I posted for asking me to open the windows at home. I was so ashamed of my behavior. I think the concensus we all came to on that thread is that it has something to do with our brains being oxygen deprived. I sometimes feel like my evil twin takes over (its always when my symptoms are bad and I feel lightheaded) and everyone is annoying...even the people that are trying to help me. If I can find the thread I'll make another post with the title. Hang in there, Katie

Hi Atomic, It sounds like you're had your fair share of heartache with the doctors and I am so sorry to hear you lost your mom. Is it possible to maybe ease back into the healthcare world? Maybe instead of going for a therapist up front, you can find a support group in your area for people with chronic illness. Maybe that could get a better support network going for you (we here of course can help support you but its not the same as having another human sitting next to you.) Once you have some good support around you, then maybe you could find some care that is considered "alternative" such as chiropractic or acupuncture to work on alleviating some of the fear and anxiety. I have used both chiro and acupuncture (not for POTS) with great results over the years and these practioners tend to be less jugdemental that "conventional" docs. They helped me with all kinds of my symptoms. Those were just some thoughts for getting a start back to health.... I am keeping you in my good thoughts. Katie

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