Birdlady

Yes I am on HC for the AI. I'm not exactly sure why eosinophils are elevated in some patients with AI. haha! All I know is that when I got on HC, they immediately came down and that study also says this too.

I had elevated eosinophils prior to my AI diagnosis. I haven't had them since being treated. Just wanted to throw that one out there! I'm sure there are other causes though. Here's a study to back this up too. http://www.ncbi.nlm..../pubmed/8957461

issie, I am so excited for you. I will help anyone and everyone with their results. I broke down and ordered my husband a kit. It's gonna be his bday gift!

I've finally had some time to look over my 23andme results in regards to the methylation theory. I think it is interesting and some people may see some benefits with methylfolate, especially those with the compound heterozygous or homozygous mutations. However, it's important to remember that this is all very much theory and in it's beginning stages. I think some of the other genes (COMT, MAO A, NAT2, P450 enzymes etc) need to be further investigated in us POTSies. It very well may help us to understand why we have such different symptoms, reactions to meds etc. yet mainstream researchers aren't even looking in these areas. After seeing my results it is no wonder the one size fits all methylation supplements were diasterous for me. I test as a overmethylator so all of these protocols assumed everyone was an undermethylator. That is likely why my mood was all over the place and I would get heart palpitations with seemingly innocent supplements. It probably also explains why I feel like I have HyperPOTs but I don't have the high BP associated with it. Now that I have this new knowledge, I'm going to see what I can do... I've already started on GABA and am looking to get some hydroB12 instead of methylB12 to see if I notice any mood changes. From there, we will see how I feel and then dig deeper. I don't see this as a cure by any means, but it may help some of you feel less fatigued or have less brain fog which are the most common symptoms here. I tend to be on the opposite end. I have too much nervous energy and obsession, which doesn't feel very good either. We will see what happens, but I just wanted to report my updated findings. Hope everyone is doing well!

I really really want one, but right now it's out of my price range. I wonder if insurance would cover this? I do all of the water spritzing tricks. haha! I even get cool baths just to cool myself down. All it takes is getting overheated for 10 minutes and I get the beginning stages of heat exhaustion. Ugh summer time is not good for me at all. Same thing happens with exercise too. I get heat exhaustion from it... I can relate to your reply, its exactly my main problem too. Have you tried a cooling vest ? I usually wear one in summer and also carry around a mini hand held fan and a pump spray water bottle, its helps a lot. What you do is spray yourself with water and then use the fan to cool off the water, its awesome and so refreshing, even my friends steal it off me to have a go and they dont even have Dysautonomia.

I'd have to say, Heat intolerance. It's my worst symptom and no meds control that one.

I'm a weird one and have zero symptoms (except for heat intolerance) while sitting. My POTS since it's started has always been like this and I think that's why I'm more mobile than most POTSies even without any medications. When I'm sitting I am completely normal feeling. Unfortunately I can't take the poll because the last question only has a bad option and I'm never bad while sitting...

Hey Issie, I've tried more fluids a few years ago and it doesn't do anything but make me pee too much. lol I was even on DDAVP for a while, which forces your body to hold onto fluids. We are all very different. Some have amazing results with saline IV, but my first TTT was done while on saline and DDAVP and my HR still hit 180. hahah!! I don't deprive myself of water. I just drink normal amounts.

Thanks for all of the suggestions! It does seem some of you have an easier go at this than others, which I'm envious of. If I were to hit 200BPM while exercising, I'd be in bed for a week which would completely cancel out any benefit I got from it. Spending an extra 100 hours in bed seems counter productive.... HA!

I didn't want this to get too off-topic, but I just wanted to put my struggles I've had with exercise. I fear clonidine isn't going to work because my BP is low normal to normal despite having high norepinephrine and HyperPOTS symptoms. I took my BP at my parents house today and it was 102/75 HR 62... Which is pretty low for me. I was a little shocked at both the BP and HR actually...haha When I stand up or do exercise and I get 80+ BPM increases in my HR. It's not pleasant, but I'm not really sure what to take. Nothing has been good for me thus far, so I just went au naturale a few years ago. Even on beta blockers, florinef, DDAVP and midodrine, I was routinely hitting 160. That's why i quit everything. I figured why be on these meds if I'm no better. I thought I'd try exercise to see what that would do, but I'm really having a lot of difficulties. I hear so many have amazing results with it, but I'm really failing here. Why can't things be easy? lol If anyone has any suggestions on what I should bring up to my doctor, please PM. My docs are clueless... Thanks Issie for worrying about me. LOL The funny thing is, is that my heart so far is working perfect... The lady who did my echocardiogram said they could have used my images in medical textbooks for what it should look like. haha

I must be overdoing it if you are keeping your HR in the 120's. I'm hitting 170's easily. What worries me with this, is that my standing HR's are into the 140's. There's no way I could jog and stay in the 120's while exercising... I'm not on any medications for POTS, so that probably explains it. Jangle, I also find it interesting that squats are good for you! wow...It shows how different we all are! Standing firm in one place and then squating causes major issues. Sadly this week has not been good at all and I hate to say it, but it correlates with when I added in exercise. I'm taking a week off and starting over again to see what happens. For me I have to do sitting exercises without much resistance and no postural changes, otherwise my HR hits 170+ while exercising. That always causes a major crash for me. It might take a few days but it always happens.

I gave up on salt loading and drinking extra fluids. I know not everyone is alike, but for me it messed up my electrolytes more and made me gain weight due to the extra fluid retention. Blah!! Now I just drink when I'm thirsty and salt my food to my taste. Interesting thing I wanted to add. I did a 23andme genetic test and I have every single marker that suggests salt intake will not increase my BP. I already knew that beforehand though... It was just nice to see my genes reflected that phenotype.

What heart rates are you guys reaching while exercising?

It sounds like I am overdoing it then, but at the same time not doing it often enough. I apparently have this issue too. What % of target heart rate does Dr. G recommend starting out at?

I wish I had these positive effects from exercise. Good for you though!

One thing that drives me a little crazy is that there is no gold standard for TTT. What one person gets done at their local hospital is entirely different compared to what someone gets done at CC or Vanderbilt. I really don't understand it. It's impossible to compare with one another unless we've all been to the same place. For my first TTT, I was hooked up to a saline IV and my Bp went up. Never fainted even when given Nitro. I was also on HC, florinef and DDAVP...lol For my second TTT, I wasn't on saline and my BP dipped to ~85/90 but it was temporary and I never fainted. I ws on HC, florinef but no DDAVP. Of the two TTT I had done, I have to give CC a lot of credit. Their testing methology was like a well-oiled machine. Everyone knew what needed to be done and did their role. My first TTT, it was a disaster.... lol They started it early without everyone in place. They were asking me all sorts of questions during it too. CC strictly told me not to talk and to remain calm or it would affect the results...

Well my ANA is 320 Speckled positive, but the subsequent tests were negative. I got my bloodwork out and this is what was tested. Everything was normal/negative except for anti-histone antibodies and CH50. I just had a strep infection, so my doc thinks it's likely related, but he is keeping an eye on things. I see him in July. CRP ESR RA Anti-DS DNA C3 Complement C4 Complement CH50 (High) SM antibody RNP antibody SS-A/RO Antibody SS-B/LA antibody Histone Antibodies (High) Cyclic Citrullinated Peptide Antibody (CCP) Rheumatoid Factor I'm the healthiest sick person you will find, at least on paper...lol

@ peregrine I never had a qsart test done, so I guess this would be a good first step. The good news is that they now do this at the hospital in my area! @Serbo I'm not entirely sure. My rheumy did a ton of blood work and said everything was negative. I'd have to get my bloodwork out and check if you are interested. I don't have any symptoms of SLE or Sjogren's so I felt like it should have been negative if that makes any sense...lol If you have the butterfly rash, that definitely sounds suspect. I've never had anything like that ever.

There is no way I was deconditioned before diagnosis. Perhaps I am now, but at 16 I loved doing my 8 minute tae bo workout, riding my bike and being a normal teenager. Kind of funny a handful of us were doing Tae Bo. The next research paper that comes out might say Tae Bo caused POTS... Too much common sense! hahaha

Oh my it's never easy, is it? I have to laugh or I'll cry. Part of me is just getting soo sick of doctors, tests, appointments etc. It's like this... Do I really want to go through all of this and then to think a negative might not even be a negative? Talk about frustrating. I'm sorry to hear your tests didn't reveal anything new for you. For now I've had Sjogren's and SLE ruled out. These were checked by the rheumy because I have a positive speckled ANA, but the subsequent tests were all negative except for positive Histone. He wasn't sure exactly what was causing that, but something I had taken was "bothering my immune system". I hadn't taken anything, so I didn't know what to make of that. I see him in July, so maybe I can dig more into SFN. I'm sure I could get him to refer me to get tested. Lots to think about. Thank you!

I have a new symptom that has sprung up ever since I got strep back in December which turned into post-streptoccocal reactive arthritis with erythema nodosum. It was 6 weeks of severe joint pain, swelling and being completely immobile, but funny thing about it, is that my POTS was nearly 95% better then. As the inflammation in my joints and the nodules on my legs got better, my POTS got worse...lol Anyway, I have noticed since the EN has cleared up when I am standing straight up without slouching, and putting all my pressure on my feet, that I get an unbearable itching and burning in my shins and tops of feet. I have to stop standing like that and scratch them. When I look down at them, they look like your typical blood pooling POTS feet. No rash or anything. I had a EMG and NVC done about a month ago because my rheumatologist was so sure I had neuropathy in my legs. He looked at them and said they did not look right. I have to assume it's probably blood pooling from POTS? It turned out my large nerves work perfectly. The tech said my tingling and falling asleep issues were likely circulatory, but now I'm wondering perhaps it is SFN? I didn't realize at the time, these two tests can't check for SFN. Part of me has always thought I had SFN. Is it worth the skin biopsy to get dx'd. What does a Dx of SFN really do for a person as far as treatment goes? At this point, it's just an annoying symptom, but I guess if it gets worse, I may have to talk to my rheumy again. Thanks for any input.

Naomi, Cleveland Clinic dx'd me with HyperPOTS with a standing NE of only ~613 and I do not have high BP. I think Vanderbilt is more strict with their diagnosing criteria for HyperPOTS. While I have symptoms of HyperPOTS (anxiety, shortness of breath, sweating, tremors), I just don't have the high BP issues for some reason. I can't really figure it all out. I'm not a fainter, even when my BP drops some. I just have temporary pre-syncope and recover. Not sure if that helps any, but just wanted to share my experience.

I'm complete opposite of you. I do better in the winter and pretty much can't do anything in the summer because of the heat and humidity.

Arizona Girl, I agree I need to get these things checked.You are the 2nd person in a week to tell me this and the other person was on a different forum! lol Interestingly even as a kid I had trouble mounting fevers. I'd tell my mom I was really sick (sore throat), but wouldn't have a fever. Doctors would tell me I was making it up (funny how this started so young...haha) and it was probably just a virus, but then the culture would come back positive for strep. When I do get a fever though it is always really bad 104+. I also have a positive ANA (just found out) and my rheumy isn't really sure why and is just keeping an eye on it. It's hard to really know where to go from here though. I am negative for sjogrens and lupus too. When I take supplements which "support" the immune system, my POTS gets worse so I definitely think mine is immune related somehow. It makes sense considering I had viral onset.

Hmm I am encouraged to read stories like this, but they also confuse me too. I always want more details on how someone got better. I don't really understand how a person could just come completely off of meds and be fine... That just doesn't make any sense to me especially if they have dysautonomia. I'm not on medication for my POTS atm (my choice) and I can live, but I'm still too sick to be considered normal and can't hold a job. That's a far cry from being able to perform in a band.. haha Regardless of how or why he is better, I am very happy for Greg! Consider me jealous!