roxie

Earlier this year I has mine tested for the first time and it was either 10 or13, I don't remember. I started taking a high dose of a liquid supplement daily and my numbers got up to 100 so I took my dose to a little lower and will have them rechecked soon. All that to say I checked 10-20

Mine is totally obvious, dr's are always staring at it. I get it in my hands too & when I'm upright a long time I think my cheeks & nose get mottled. At night when I take my stockings off there's like this purple pool that sits on the top of my foot. I just went to a knew dr who wants to go a special pelvic ultrasound bc blood can pool in your stomach too. It's called Pelvic Congestion Syndrome and it's something that can be ablated! So whoever talked about the prego look from bloating- maybe PCS is a possibility?

Ok, it was recommended I get genetic testing and will do it but the one my dr uses is backed up a few months. We'll have to wait and see There is nothing real glaring in my family history that I know about. Like my brother has a double jointed thumb and my grandma & great grandma could bend over and put their hands on the floor but that's about it. I'm scared of having EDS 4 but like I said I don't know of any family history of that or anything Maybe upcoming autonomic tests will help solve somethings too

I'm in the process of being tested for EDS. In the meantime I'm reading about it and think it's possible I have type 3, but don't really know?? Online it says there's no specific gene for type 3, so how do they know then if you have it? Is it bc I'm so hypermobile & have POTS? Is it true all the other types have a specific gene?

I believe so, but I would definitely ask your dr first. I had a dr for many years who dealt with my meds at times taking them every other day. I dont remember if florinef was one or not? Maybe you could start with a real low dose? Like 1/2 a poll or 1/4? It'd be hard to cut 1/4 though. Yogurt can help prevent yeast infections IF you don't have a dairy sensitivity. If you ate sensitive to dairy you could try a probiotic supplement, I've never tried one though I've had bouts with hbp on florinef as well as midodrine & it still freaks me out my new dr wants me to try midodrine again and i groan. We'll see. I get terribly nervous going to dr's & white coat hypertension. My new dr is putting me on a 24 hr bp and I'm nervous about that, ugh! So I get your anxiety But above all else, run it by your doc

I've always been told to get it. My dr told me sometimes you can have a small reaction because your body is creating antibodies (or something like that) but don't be alarmed it goes away in a few days. This year it wasn't bad for me, I had a little flushing and wooziness the first day but and all it was fine

Neti pot!! Strange at first but once you adjust you'll love it! Whenever i wake up stuffy I can't wait to use it

He only asked if anyone in my family has died of an anuerysm? No one has that I know of. He is going to do more testing over the next few weeks including a transcranial Doppler on the TTT, that show brain problems right? He is also very interest in my pelvis and pelvis congestion. I'm very very flexible. From the little testing he did so far he said my Beighton score was a high 7 possible 8. With 9 being the highest.

I went to a new specialist this week and he strongly believes from the timeline of my illness and flexibity that some form of EDS if the root cause of my POTS. It'll be a few months before I can get to his preferred geneticist. Anyways, I don't know a lot about EDS and from what Ive recently read some forms are fatal and that scares me. Does anyone know if the form that causes POTS is progressive & fatal? In the 14 years I've been sick I haven't gotten worse I've been perpetually stuck. He says it's because no one has address the collagen problem of EDS so until that is helped no POTs med will help. But I'm just nervous about this shortened life span and anuerism stuff now. Does anyone know?

Earlier this year my ferritin was 5 and iron sat 17% (should be at least 25%) I started taking 80mgs of iron a day. A few months ago my ferritin was up to 9. In the next few weeks I'll have it rechecked. Taking iron has helped a lot of my to the bone muscle pain

It's super super hard, that's for sure, I get mad and want to escape POTS as well but that's the thing its the ALL THE TIME, it has no discretion, and follows you everywhere. Grrrrr. I've tried lots of different exercises and could never keep up with them. then, I found this exercise program on a CFS forum a dr developed for her patients and thought I'd give it a try. I've stuck with it since the beginning of the year. Here it is OK, I finally found my exercise information. Here it is summarized: **All of these are to be done lying down.** Use heart rate monitor while exercising so that you will not exceed your personal limit. First and foremost work on focused breathing. These breaths should be taken slowly and deeply. Put a box of tissues on the stomach if you are not sure you are doing it right. The box should rise on inhalation and fall on exhalation. Inhale 3 sec. exhale 3 sec. Do this before you start exercises and 10x between exercises. [breathing helps oxygenate the blood & facilitates recovery from each exercise.] Next, work on TVA (transverse abdominal) These muscles are at your body’s very core. Start by making a Haaaaa sound when you exhale (as if you were fogging up a mirror). Do this to a count of 3 then release Start off doing 1 set of 4 reps to ensure no payback ~Toe points: Point toes then bring foot back towards leg as much as comfortably possible ~Contract thigh muscles (quadriceps) for count of 3- release ~Contract gluteus muscles for count of 3- release ~Contract biceps by bringing fist up to shoulder then back down to hips ~Overhead press: start fist by the shoulder, rotate fist outward, extending arms then back down to shoulder Once you are sure there was no payback, increase reps, then when ready increase sets ex: 2x/day then 3x/day. After you have increased to 10 reps 3x/day then you can add therabands to toe points, leg extensions (leg up in air, knee bent back toward face, push out to create a diagonal), bicep curls, overhead press. These are color coded according to the amt. of resistance. Purchase at sporting goods store or online. This next bit is not for everyone. It is very expensive. It is called the Pilates Reformer. If it is possible for you to use this machine the benefit would be great to those with POTS & ME/CFIDS. This machine works perfectly with this illness because most things can be done lying down which keeps the pulse lower. You can actually “walk” while lying down if it has a rebounder on it (mini trampoline). Many exercises are done with your legs in the air which helps the pulse rate to stay down even more so! It is almost as if it were designed for this illness.

Articles like this make me sad I've had POTS since i was 12. I'm now 26 and even my "good" spurts are no where near growing out of it. I've tried everything the dr's have said to do and I don't get better. I'm like the forgotten teenager? And then I've had a few times where I told people about my illness, they've googled it and found articles like this one and made comments like "on the Internet it says teenagers outgrow it. Why haven't you?" When people say that it hurts my heart and makes me wonder where I went wrong? Or haven't I tried hard enough? Sometimes it's almost like theres a few different illness under an umbrella term. The kind the gets better and the kind that doesnt

Hahaha- autocorrect. I meant it can turn your teeth black!

It's called cypress poly-iron http://www.amazon.co...rce-full-site=1 And if you take the liquid, use a straw & put it in the back of your mouth bc liquid iron can turn your teeth black

Lieze, I am positive this is contributing to your weakness & tiredness. Earlier this year I started following this article http://www.hospitals...-pots-recovery/ She talks about her iron problems with POTs, among other things. I decided to get better testing & found out my ferretin was 5 (it should be 70) & my saturation was low too though not as low as yours. I also has to fight dr's on it. The woman who write this article recommend this type of iron & it's what I'm taking www.amazon.com/gp/aw/d/B001AS9PLG/ref=redir_mdp_mobile/187-6703801-5919466 In the beginning I was a bit nauseous but I've been doing alright with it. I also take it with a buffered vitamin c powder to help with absorption. My numbers are creeping back up BUT the biggest thing is how much my achiness & weakness has gotten better. I'm not strong by any means but that feeling if my muscles hurting down to the bone or that they are about to give out is mostly gone.

Brynne, starting a journal to just let out all your thoughts and feelings may be very cathartic for you. You dont have to show it to anyone just keep it for yourself and your deep thoughts! Also, I was a lot like you when I was a teenager in that I cried a lone, I cried in the bathroom, shower, falling asleep. Anywhere alone. I'm gettin better at being open about my struggles with people I trust but I still cry by myself too. I think sometimes you just have too.

Hi Brynne, I wish I could give you an answer but I dont have one. I do emphasize with you how feel though. Ive had POTS since I was 12 & it's rough, you feel like everyone is passing you by and all you can do is get out of bed in the morning. Actually just before I read your post i was thinking "these should be some of the best years of my life" and I'm 25. My best advice is to cry when you need to. Use the little energy you have on things you love. Do you best to keep good friends around you. And if you have someone you trust don't be afraid to talk to them about it. A lot of times talking honestly & crying with someone really does help. ((hugs))

I'm in the same boat as kayjay. Well, I never ate very much because my stomach always hurt. Then I found out I had problems with dairy & have cut dairy out. In 2 months I gained 10 pounds, now I'm right on target of healthy weight for my height & age but am battling the fat thoughts I hope you can find something that works for you

I had laprosopic with POTS for a ruptured ovarian cyst. It was VERY hard I won't lie but I did heal. I didn't have a choice bc the cyst ruptured & was bleeding through my stomach. I ended up needing blood transfusion & it took longer than normal to recover BUT I did survive If you do have it done, make sure you are VERY closely monitored with vitals and take things slowly.

I have, it almost taste like sugar water with a slight metallic taste. It's mostly very sweet. I thought it was better when I mixed with other juices

I have Ames Walker- it's what my insurance covers

Thanks. I have full length stocking so it's the fabric rubbing behind my knee. I've tried every lotion, balm, treatment I can think of. Maybe I'll just stick with the gauze

Does anybody get chaffing behind their knees from stockings? I do & it's been getting worse, it gets a bumpy & raw,sometimes it's almost like little cuts. I've found the only thing to help heal it is putting gauze behind my knees. Has anyone found anything to help?

Great news Julie! But what about us that are younger? Can it hurt us too?

I know a lot of POTS patients have brainfog & I do too. Sometimes I feel like I can't think or retain & concentrate on anything. Something I also have is that when I read or really do anything beside laying back with my eyes closed is getting real dizzy & nauseas Do you guys too? Can anything be done about it!