gdomaracki

Hello I've come to the end of my financial resources and I still haven't gotten any medical assistance. Midodrine is one EXPENSIVE medication that I just can't go without. I was wondering if any of you have thought about, or actually gone and ordered prescription medications from Canada. I know that in the past there has been alot of speculation to whether or not this is a safe way to obtain drugs. But after all the research that I have been doing, I'm coming to the conclusion that the reason our media badmouths the foreign pharamceutical companies is because it doesn't want to lose money from its customers. Just wanted to get an opinion on this topic before I made any decisions. Thanks!

I get that tingling sensation all the time, actually its in my head and face right now lol. I take midodrine, which can cause the sensation and goosebumps which I get frequently also. soooo irritating!

Lauren, I have been on florinef for two years now and haven't really seen any negative side effects. I had problems with arrthymia's and had tried the anti-arrthymic drugs but all that did was drop my blood pressure sooo low I would end up in the hospital. (not to scare u, everyone is diff) I also take midodrine with my salt tablets daily. Trying different things in the beginning may not seem like fun, but its worth it to find out which medications, when used together, are right for you good luck nicole

Boy you sound just like me. I'm always getting d/v bugs and they are so hard to deal with when you have pots too. I've actually gotten to the point that I don't eat at buffets, weddings, parties, anywhere where the foood might have been sitting out just a little bit. Somehow I just manage to get sick off something everytime. My mom always pushes the fluid thing, and not to eat anything but its so hard when I have hypoglycemia. Of course I learn my lesson then when I eat something little and end up over the toilet. Hope you are doing much better! Nicole

Last time I had the glucose test done (at 12 yrs old), they had said that I am hypoglycemic. The test was for 7 hrs but even though I came in early in the morning..I lasted about 3 hrs and my blood sugar was already below 50. Since then I've eliminated all simple sugars from my diet and eat only whole grains/complex carbohydrates. I did have to monitor my blood sugar quite frequently back then, but now it is under control as long as I eat right.

Julie~ thanks for your input. i'm actually not in school at all right now, not since I got sick.

Mary~ I'm sure I speak for everyone to say that we are glad that you've found us and we wish you the best! I know from my experience that when I first got sick, I would be on here most of the day and from reading too much information would worry myself sick. We all have such different cases and it takes time to find out just how to read your body to find the right regulation of medication and non-medicational therapies to start heading in the right direction. Stop in from time to time to catch up and read the latest info. Best Wishes~ Nicole

Hi Ling. Sorry to hear that your having problems with relux disease. I was diagnosed last yr after it got so bad I couldn't sleep or eat. At night I would have to lay propped up because the acid was so bad, it was burning my esphoagus. I too had problems breathing because the pain so was surreal I had an a barium test done to show how I was digesting and to see if there were any ruptures in my lining. Fortunately, they put me on prilosec 2x the normal dose which helped just enough to get through. And since then, it has managed to clear up on its own, along with me watching what I eat. Best of luck. Nicoel

As if the world wasn't against me already, i've been denied my medical insurance through the state. They told me that because my doctor put that I can work part-time on my paperwork, that I'm not qualified to get the disability health insurance through the state, that I was on before. Here's the question.... Where I am to find health insurance? I surely can't find it through an employer, since I can't work the full time hours. My mom is unable to put me on hers because I have to be a full time student. And the state has denied me. If anyone has an ideas where I should go from here, please let me know. I wasn't expecting the denial and my medications run out next wk..And I'm out of funds. I need a miracle. PLUS...the cc company wants all there money by nxt wk or they're taking me to court. i can't even afford court, i spent all my money trying to get better. ahhhh...thanks for listening to me vent, i'm going back to bed before anything else can go wrong Nicole ps. is it normal to have a tingling sensation in your legs often, along with numbness and goose bumps?!?

I've taken MIDODRINE HCL 10mg Tablet 2-3x daily for the past year and a half. Its a blue, circular tablet from the manufactorer Eon. I haven't had any problems taking it, and it helps to raise my blood pressure quite well. The only side effect I notice would be the occasional goosebumps. Weird, I know!

I've known people to have alot of problems with it and then there are some, myself included, who haven't had any viruses, etc. Mine is set to private, so that might also be why. ps. you guys can send me a pm too w/your addy and i'll get you mine too

Happy Monday!! I wanted to thank you all for your comments on my post. They were very informative and encouraging. Its so wonderful to know that there are people out there who care so much and are experiencing the same hardships as I. Thank you! Nicole *bgsu4- How sorry am I to hear of your father's passing. Your in my thoughts and prayers. Trying to keep a positive outlook on things can be so frustrating when you feeling like the world's against you and i definately agree that this is a life changing experience that has brought me also closer to God. My delemia is that I'm waiting to have my life back so I can use the experience that has changed me. Take Care

Hello Everyone!?! I've been a little uneasy lately and I figured I would present my worries to my pots people I know that not every person with pots has the same prognosis. I became ill in Oct 05 after a viral infection, and diagnosed in Feb 06 with POTS/NCS, w/underlying chronic fatigue. My doctor told me, that it would take 2/3 years but that I would make close to a full recovery. Here's the thing.... Its been nearly a yr/half now, and I'm afraid that I'm not making the progress that I should be.I am doing tremedulously better and am able to do alot more, but I'm still symptomatic every day and am having spells. My doctor "says" that I'm doing well and that he is still expecting a near full recovery. Now I know he wouldn't lie to me, per say, but is it really that common to have a full recoverys. I guess what I'm trying to say is that I'm scared. I've gone this far thinking that this illness is only temporary, and now I'm coming to the realization that I might have this alot longer than expected or for the rest of my life. Can you really have a full recovery, or at least become a-symptomatic? Any thoughts/comments will put my mind at ease, thank you Nicole

Desiree~ I take zoloft along with my other pots medications and it does seem to help. I'm from Pa too and I see Dr. Consevage from Moffit Heart & Vascular Group, near Harrisburg. Its quite a drive for me, but he is VERY knowledgable with POTS. (and nurses too) The only thing is, is that he is actually a pediatric cardiologist, but if i'm not mistaken he will see patients over 21 with Dysautonomia/POTS apon request.

Welcome Lauren! Yes, using an SSRI/anti depressant can be a big help but it always depends on the person. I am also currently on midodrine and florinef and YES it is so very expensive. If my insurance didn't take care of it I wouldn't be taking it, and it was what really helped me. Increasing your salt and fluid intake are always a plus! This is a way you can raise your blood pressure every day non-medicationally. Therma-tabs are a great way to get salt and can be found for $6 a bottle at your local drug store. Any kind of pain in your chest is always worth getting checked, but more than likely if they don't find anything its just one of those strange discomforts from the pots. Same with the swallowing. Always check with your doctor first though. Glad you found us here, its always good to know that your not alone in this! And I know what you mean by being so young, i got sick with pots at 19. Nicole

Oh my goodness!! Yeah we have alot of trouble with ticks here out in the country too, especially Pa. I too have been tested for lymes disease and thank goodness it was negative. I don't think I could handle having both. Thanks for the warning though, nicole

So sorry to hear about your bad spell.... Hope you get to feel better I know what you mean about being so scared, I had a spell last night (not as severe as yours) and it scared me so bad that I couldn't get to sleep.

Muscle fatigue and fibromalygina can result for dysautonomia and pots. Glad to hear that your other symptoms have let up for you.

Melissa~ You poor thing. I do hope your up and feeling better soon. Thank goodness that they found the infection before it spread. Do feel better soon! ! !

Cheryl. First of all, might I say welcome! I was in the same boat as you just a few months ago until I found this site, and got diagnosed. Its always good to know that it all isn't just in your head, a sort of knowing puts your mind at ease even if the doctors aren't exactly sure how to fix you. This forum is such a wonderful blessing to myself and many others. Without the comfort and wisdom of these beautiful, strong people I'm not sure if I could have made it this far. Knowing that your not alone, and that there is light at the end of this tunnel gives me strength to perservere another day. Welcome again. Nicole

The tachy is your bodies way of trying to raise your blood pressure, when it begins to drop. It means that your body is compensating for something and you need this.

I do hope your brother finds the strength that he needs to get through his chemo, that the doctors will have the knowledge and guidance to rid his struggling body of this terrible illness. And may his work come to an understanding and realize that this young man needs time to rest and heal. For he is in the fight of his life, and your health definately comes before work. In my thoughts and prayers deary! Nicole

~Amy. My goodness dear, I do hope things start getting better for you. And that the symptoms you are experiencing are just part of the potsy cycle, not anything more serious. I do hope that the doctors can find something that can elivate some of your pain and begin to make you feel better. I am definately thinking about hiring a lawyer to do my ssd/ssi case. I haven't even begun it, but from your story and the difficulties that so many of you have encountered. I feel that it would just save me the stress and energy, which I have none of, just to have someone else trained to handle it. (although I really don't feel like paying for it, lol.) You and your mom are in my thoughts and prayers! Feel Better Soon.

I'd have to go with fatigue too, even though many of my symptoms seem worse nothing beats my ongoing chronic fatigue. Nothing like sleeping 10 hours a night, taking a 3 hour nap during the day...and STILL being tired.

Yeah, I always debate an er visit. I can't stand going there because I know that I'm not going to get the right treatment, and they don't understand my condition. The only thing about calling my doctor, is that, the office is closed. Since I haven't had chest pain since the incident last night, I might wait until Monday. Now if it happens again, be sure I will call someone for medical advice. I do remember having a few episodes like this, especially around that time of the month, and it went away just as it came about. I've had a cardio evaluation, everythings working correctly that I know of. My only thing problem is my inappropriate sinus tachy which eventually led to my pots diagnosis. Other than that, I passed my stress test with flying colors which is wonderful because I'm only 20 yrs old. Too young for heart probs...