roxie

No, I've never heard of it. I googled it but it doesn't quite look like what I have. It may be possible

Late august I had what I thought was a heat rash or yeast rash on my left side where my heart rate monitor is when I exercise. After a few weeks w/antifungal cream it cleared up except for a few tiny bumps that are still there. They don't itch anymore. About weeks ago (2, I think?) I had what seemed like a really sore pimple on my rear end and in two days the left side of my rear was covered is these swollen, red bumps that really hurt and almost burned. I ended sitting on ice packs. I started using the anti fungal & since i was at the dr asked about it. She said it has the appearance of shingles. She did a culture from the puss & a blood test. They both came back negative. The left side is settling down but I have all these purple festered scabs. Now a few days ago it started to break out on the right side of my backend and hip. What is going on? It looks like shingles but isn't & is showing up in new places weekly. A shot in the dark, Mid-august I started a beta blocker (inderal) at night. Could I be having a hive like reaction to it? They say if you have MCAD you should stay away from beta blockers. I have no clue if I have MCAD no ones ever looked into it. But it doesn't look like hives & hives don't last for weeks. I'm just finding the whole thing odd. Could it be a strange rash that needs to run it's course? I have an appointment next week & if it doesn't go away I'll have to how my dr.

It's a tough situation, I've spent a lot of years feeling like the only people who believe me are my parents. I've noticed there is a difference in the way people react to POTS when I was a teenager than they do now in my 20s. As a teenager people my age were rough, I looked normal but I had gone to a small school & everyone knew I was "that girl who got really sick" and two things happened they were either -afraid of me and always shocked to find out I watch the same movies & listen to the same music OR - the thought I was making it up for attention and talked behind my back. Getting into my 20s I've come across some more understanding people on the surface. I don't however think they grasp what its like. They may be more accepting but they have their own lives, why have a relationship with me? That's what I struggle with- everyone moves on & I'm just left by myself. It hurts, I have to fight the "I'm unlikeable" thoughts. People do only see us at our "best" and can't grasp that we go home and crash, sometimes for days.

I wonder if with some brainstorming there is a way you could still keep some if your dream alive? I don't know all that goes in to owning a salon, I'm sure it's very active hairstylists are always standing, plus with scheduling & book keeping. Like could you order magazines for them? Or write a newsletter, a blog? Something to keep you involved

Whenever I have a new pair of stockings I have a few dizzier days and then it settles down.

I was at my OBGYN talking about that this week too for pelvic pain, She told me to wait to start till the first Sunday after my period starts, so I have to wait. Like 10 years ago I tried continuos & didn't do well with them. I had breakthrough bleeding every two weeks. So I stopped them. My dr this time told me you really need to train your body to have less periods. She's have me do 3 months with the sugar pill week/period. If I do ok with that Ill try 2 pack in a row & then allow a period. I'll gradually increase my time in between periods. She also told me that there are so many different formulations of pills that if one doesn't work dont get discouraged there are others to try that may be perfect.

Yes, you can call and ask for her records. If she is hypermobile you definitely want to look into EDS. A good rhuematologist can help with that. Also, look on EDNF. org. They may know of an EDS dr. Usually a good EDS dr will have know about POTS

Definitely get a second opinion. Preferably one who already has knowledge of POTS & other Dysautonomias. There is a physicians list here. You may have to travel to one and that initially sounds like a pain but a knowledgable dr is worth it's weight in gold! My PotS started when I was 12 and was told the exact same thing about that's the way teenagers are and on and on. It not true. Please stick to your guns and be your daughters advocate. If one dr doesn't listen move on. The automatic bp machine is a good idea. If possible you could get a heart rate chest strap and watch her heart rates during the day. It'll all an understanding dr valuable information. research the conditions listed here that can cause POTS. And go through "what helps" and "what to avoid" section putting them into practice the best you can! If she can't stand up to exercise, do laying down exercises. Starting as low as you need and slowly and consistently increase things.

I've noticed that when I walk it's significantly slower than everyone else. Whenever I have an appointment every walking down the hall is way ahead of me and always turns around to look at me. Anyone else? I always think in my head "I'm standing and walking what more do you expect?"

I had a POTS dx long before EDS, it wasn't until I got to a POTS specialist that EDS was even talked about. He told me that with the right treatment (which takes a lot of trial and error) I should be able to manage but it takes a lot of awareness and consistency. He sees in his patients the midodrine & exercise are the best for EDS patients & loose veins.

Mine is pretty labile

Yes, you aren't supposed to lay down on it. That was hard for me to of how much I layed down before. I started with one dose &forced myself to sit up for 4 hours. I'd need to lay down for a few minutes here and there. It's slowing getting easier. I haven't been able to nap sitting up. I just sit with my eyes closed and try to relax as much as possible

Definitely do what you can to strength & support your legs & ankles (even if its kicking your legs in the bathtub) and then slowly work on one or two steps gradually increasing

I've seen dr's who have heard of it and who know the basics of it but aren't experts. It's not going to hurt to go to her & see what she says. Keep an open mind but dont get your hopes up SO high that you think you'll be cured.

My mom just got a bunch of these and they are so great. It makes it easier for POTsies to clean. They are called antimicrobeal microfiber clothes. Here's how they work http://green-clean-tips.blogspot.com/2011/06/microfiber-cloths-and-how-antibacterial.html

I know! And what really gets to me is when it's someone who has a health problem that different than ours. Have you ever run into someone who thinks what works for their disease must for work for yours. SO FRUSTRATING. And do you ever feel like our illnesses aren't looked at like other disabilities? Like you see ppl in wheelchairs and w/out limbs that can do all sorts of things & they are praised for it, rightfully so! Yet some don't see us as strong or persaverant bc we aren't doing earth shattering things. When it takes a ton of courage to get up everyday & get through basic things.

It's invisible illness week and invisibleillnessweek.com has a lot of great articles. This one in particular was great about how to cope with unsolicited advice we always receive http://invisibleillnessweek.com/2010/08/24/how-to-cope-with-unsolicited-advice-when-you-have-an-invisible-chronic-illness/

Puppy love- I really don't know if it is connected but when you consider hormones are wild as a teenager and POTS make things wacky it'd seem possible. I'd encourage you to be honest with your dr even though it is uncomfortable to talk about. I had a few ruptured cysts when I was a teenager but they seemed to be overlooked bc I had regular periods. Now, a few later I'm finding out my cysts should've been watched and taken more seriously. If you search the board you'll see that a lot of us have had ovarian cysts & a common sign of polycystic ovaries is missed & irregular periods. Studies may have not been published directly linking them for us but many of us have had it happen so all that to say talk to your dr, you may be able to fix it early.

Batik, do you mean autism spectrum disorder? I've tried to describe my mom how this like swirl around when a lot is going on and it's hard to process and she said it's almost like autism. But I'm not autistic. I normally don't feel like I'll run into things but I have this problem of thinking everyone's too close to me. It's normal at my house to hear me "you're too close" and it's like a joke to ppl but maybe it's why I feel crowded?

I don't know if this falls umber proprioception but if sometimes when I try to walk I feel like I'm being pulled, usually forward but sometimes backwards.

I had a full spine MRI, so they can do it. Some insurances cover I think.' it's all individual

I was told to watch it in the beginning and after switching doses. Since I've been on the same dose for a while I check it occasionally, like once or twice a week. Or if I'm really really not feeling well.

I find the side effects mild, too.

Hmmm, ya know mine didn't show any apnea but I sleep on my stomach the most. Sometimes if I do sleep on my back, which is rare, I'm woke up by like a startle or deep breath thing. Im also petite, I know my neck is no where near 16 inches.

There are many ppl that have found help through treatment. It is a matter of finding the underlying cause and doing the best to work with it I have started to improve some this year with meds, exercise,diet,& supplements more than I have the past 14 years. Did you say you are in WI? I believe there is a dr in milkwakee, Dr Chemilsky. There is also a dr in buffalo NY, Dr Svetlana Blyithsteryn that does phone consults & is supposed to be very very good. Maybe that's an option for you. I am 27, single, unable to work & living my parents. The future is what scares me most. How am I going to build my own , indepednat life? Will I somehow find a career? A man? Or stay this way forever? I don't know but I have to have faith that things can improve & work toward that. There's always going to be bad days and downs days that we need to allow ourselves. We have to get those feelings out. It's what you do with them that matter, once you feel them are you ready to get up & try again. It could be what makes the difference. Hang in there