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Does anyone get bouts of tingling senstation and feeling like your pricked by needles? i woke up with that this morning. It seems to move around my body at different times?

Hi Julie!! I'm homebound as well and I really hate admitting it but i think it's ok to here! I am 24, single, and living with my parents. It's really hard sometimes, I got sick when I was 12 and I"ve never really been able to function since. Most of my friends I keep in touch with through email but those friends are few and far between. sometimes i get invited to do things but it's always hard to accept bc I can't plan to far ahead and sometimes I just don't want to bc I don't want to do with a week long aftermath.. normal people don't get that. I also like to knit and crochet. If you search the internet there are many organizations that can donate things you make to! Look up some knitting magazines and they have lists of charities a lot of times. I've donated things to places for people with cancer or at my dad's old job they collected things for military and I crocheted hats! Personally, i think doing something to support the troops is a great idea! My brother joined the marines last winter and i know firsthand how much letters mean to them. one word of caution though, make sure you check out the legitimacy of the organization first. From having my brother in the military I know that sometimes people set up fake organizations and they either send things to people in jail or sometimes they attach mean letters. If you want to do something for the military I'd suggest trying to contact your local recruiter, uso, or military base. they would be able to give you the best infortmation!!!! Bananas

Hi! I was at the dr's last week and he was talking about going back on Midorine. I was on it a few years ago and it seemed to be helping then one day out of the blue my bp skyrocketed and for months no matter how low of a dose I took my bp was too high so I stopped taking it. Now he wants to try it again and I'm nervous bc of the whole bp thing. So I have a few questions for y'all Has anybody had any extended bp problems with midorine? How do you guys keep it a normal number? How often do you take you bp? Do you still wear comopression stockings on midodrine? Any input would be appreciated Bananas

hey! does anyone understand how sometimes our bp and pulse can be normal and we skill have symptoms? or at least I still have symptoms of heachaces, nausea, fatigue and dizziness? If I'm at the dr's an my vitals are anywher near normal he thinks i must be doing great but so often I feel horrible...i just don't understand bananas

Hi Everyone! Today I found out about a book that has a chapter in it with the story of a girl with POTS and Arnold-chiari malformation. The book is called Wilderness Skills For Women by Marian Jordan. The story is in either chapter four or five I don't remember right now but it's about a girl named Sarah! ~Bananas

HI! Yesterday I was watching oprah with dr oz and he was talking about how he uses accupressure and reflexology with all his patients to do this like reduce stress, ease headaches, and even help with digestive issues. Has anyone tried this? Has it helped at all? i tried doing the one that is supposed to help with headaches and I felt weird and lightheaded for the rest of the day. If anyone has any experience with this stuff I'd love to hear about it Bananas

HI! My eyes seem to get tired a long with my body when I do things and I was wondering if anyone else has the same problem? I've really been considereing buying a kindle from amazon but I'm afraid that I'll spend the money on it and it will bother my eyes causing headaches and nausea like some other things have. Does anyone have experience with the kindle? Did it increase your symptoms at all? ~Bananas

Ive been on florinef consistanly for 11 yrs and haven't had any real problems. I've also had ekg's done at different times and they all have been fine so I don't think theres anything to worry about. Most important keep your sodium, potassium, and water levels normals. The main side effects I've had is that it does make me gain weight, like 10 pounds, when I decrease my dose I loose the weight quickly. It also can cause acne so don't panic if you start having skin trouble. hope this helps. ~bananas

Rachel, I found it on the coolsport page under "cooling accessories". bananas

Hi! I see in the "what helps" section that cooling vest may help potsy when they are in hot whether. I am wondering if anyone has tried the wheelchair cooling pads? If so, do they work? Later this month I'm going to an event that I'll need to be outside for a few hours and am thinking about getting a wheelchair pad ~bananas

HI! The other night I was watching 20/20 about work at home scans and they were talking to the owner of this website that investigates all those work at home things. I went to look at the sight and it has tons and tons of legitimate work at home opportunities in all sorts of field, including one the specifically looks for people with disabilities If you're interested here's the link: http://www.staffcentrix.com Bananas

HI! The other night I was watching 20/20 about work at home scans and they were talking to the owner of this website that investigates all those work at home things. I went to look at the sight and it has tons and tons of legitimate work at home opportunities in all sorts of field, including one the specifically looks for people with disabilities If you're interested here's the link: http://www.staffcentrix.com Bananas

HI all! I have been really confused about this one thing lately and just don't know what to do. Some say you should sleep with the head of your bed elevated orthers say your feet? For the past few years I have slept with my feet elevated, gave my head elevated a chance once for like 3 days and couldn't sleep at all, so I went back to having my feet up. Now, I am hearing that I should sleep with my head elevated to reduce reflux, increase blood volume, or strengthen my veins. which is it? Plus how long does it take to adjust to a new position? does anyone know the objective of either? My mom brought this up the other day and I don't know if anyone has tried but what about sleeping with both head and feet elevated?You know like those mechanical beds? A problem I have with that is I only seem to sleep on me stomach, would that hurt if I was "u" shaped? I hope this makes sense to you all. Bananas

Rachel, do they only hire disabled people? Could you let me know the name of the company as well?

do you wear spanx over the compression stockings? ~bananas

My ana is high, my dr always puts it, "YOu have a high lupus indicator" but nothing else tests positive for lupus. He says he doesn't know how it plays into everything, but I had it done when I first got sick 10 years ago and then I had one last year and each time they were high. sorry i can't give more advice Madeline

Hello! I have a lot of stomach problems, and have wondered for a long time, what is the difference between irritable bowel syndrome-constipation and gastroparesis? I have been diagnosed with ibs-c but sometimes I wonder if it is gastroparesis although I don't know the difference Madeline

I HAVE THE SAME PROBLEM and it is torture, I am even in a relapse, since last March grrr.... I am having the exact same feelings. The only thing I can count on and hopefully you can find too, is that I have my mom who will help me with anything Do you have someone to help you. The only other thing that works for me, is list making. Hope this helps madeline

Michele, I am sorry to hear about your troubles I wish that I had an answer for you, but I do not The only consolation that I can offer is that I am going through the very same thing that you. For the past nine months my body has not been tolerating my meds and I have not been able to gain any strength or endurance, it is unbelievably frustrating. I too, have to tell myself that this to will pass and it is comforting to hear that other people have experienced it and have experienced it getting better. Have you thought about trying new or re-trying medication that you have already taken? That is what I am in the procress of and hopefully will have some success with my next attempt mid-january. I guess right now all you can do is take it day by day and do the best that you can, praying for strength and enjoying simple things. I have found that I like to listen to audiobooks to pass time Until you are feeling better (((Hugs)))) Madeline

Rachel, I hope that these new leads will create some postitive results for you. my prayers and thoughts will be with you over the next few months madeline

Michele, I do believe that you can use midodrine on an as needed basis, but I do not know how it will afffect migraines. I am sorry that you are having this trouble, I have trouble with my periods as well, but I am not strong in between either. Recently I have been doing some research on diet and how that affects our bodies, I am planning on reading the book "Diet Cure" by Julie Ross that claims to fix hormone havoc through your diet and also might check out "Food Cures" by Joy Bauer which claims to have a diet to reduce PMS, I don't know if this works but am going to look into it, maybe it would help you as well? Madeline

As strange as this sounds to say THATS SO GREAT FOR YOU!!!! I can empahtize I have has terrible allergies this year, I live in upstate ny and things have froze over, but my nasal passages are still swollen and my ears keep crinkling and popping so I am still taking my allergy meds hoping it will eventually dry it up, How did they do you testing? I had some blood tests done for seasonal and poultry allergies a few years back, but they seem to have gotten worse. Let us know how the allergy shots go and if getting rid of the allergies helps you POTS. best wishes, Madeline

Hello again! I have an already scheduled appointment with my dr for next week, so i can just talk to him about it then. I went down on the prozac b.c I was feeling like it increased every emotion and that was no fun, he felt I should take it down, but I have heard that prozac can either lower or raise your bp After talking to my mom she feels like I might be worrying to much about my bp and that is causinf it to stay high and that I should put away my bp moniter for awhile and just relax. Taking it 2-4 times a day is a little nuerotic, sometimes I just get in rut and now have to work on getting out of it. I know that in time things will be ok, I've changed my florinef doses TONS of times over the past 10 years, I always end up dropping it for dif reasons and then having to bring it back up b.c its not enough so that may be my next step, but I am always careful to do things one at a time with my dr!! hope I'm making sense. Madeline

Julie, I do take florinef and salt. Over the years we have played with the doses at different times for different reasons, but somehow always found my way back to .1mg 2xday. Right now I am taking .1 AM and .05 PM, but I have been on that dose last spring, but you never know. When it first went up, I lowered the salt and it was still borderline like low 80's then I decided to eat salt anyway and started to feel a little better, but my bp went up to 128/88 in the afternoon and 134/91 in the evening. so who knows? if it stays up we will prob have to try something again, I dropped my prozac dose last week though . Does he do as well on less florinef in one week then he did taking it everyday??? btw, i'm not growing, lol, I don't think I've grown since I was 15 and that was 7 years ago!!! Also, is there a reason you only take his bp once a week? How often does everyone take their bp??? Take care, Madeline

Hello! I know that some of you can have hbp at times as well as can I, usually mine is fixed through changing my meds, but I have been having elevated bp for about 2 1/2 weeks now, nothing dangerous aruond 128/88- 133/93 with really no rhyme or reason, did decrease some meds, but it isn't helping. So, my question is- those that say that have elevated/hbp sometimes. how long does it last? and what do you do about it? like is it only a day or two or a month or what? thanks Madeline