gdomaracki

What a true blessing you all are. I'd be a reck without your support thats for sure, as if I'm not already. I'm definately stuck in the grieving stage, heck I guess who wouldn't be. Its only been a few weeks since my diagnoses. I think that seeing my family in pain because of me hurts even worse than this illness itself.

Even though your blood pressure is a little above normal, your heart sounds to me like it is still working hard to keep that up. (thats why your heart rate is higher) I know I get scared to take my midodrine when my blood pressure is higher (which is rare), but I have. And it only lasts between 3-4 hours in your blood stream. What dosage of midodrine are you on? Nicole

I would definately have to be a gymnast

I went to a pots specialist today, which I thought was going to be a great idea. Finally talking with someone who doesn't think i'm a nut, and understands what I'm going through. But, after speaking with him and hearing him tell me that it may be years until I get better if I do at all. And that I'm one of the worse cases he has seen. Its devastating! And the worst thing was, that my mom was there and she started bawling. I knew that this would be hard, but hearing it from a doctor hurt so much more. I can't stop crying. I also found out that I might have been suffering from this all along, and a mild virus I had in Oct. put me over the edge. He has decided to change my midodrine to 10mg 3x daily, .2mg of florinef (trying again), salt tablets, and exercise. He mentioned that I am pooling REALLY bad, within a matter of minutes my hands and legs swell. I just can't accept the fact that I'm sick, and things might not change. I hurt so bad. . . Thank you for listening, Nicole

Well~ It all started about two days ago and it hasn't stopped since. All I know im sore, my tummy feels like it hates me and I've drank enough pepto to turn myself pink I know that this can be common when starting a new medication, or if you have had problems with it in the past but this is all new to me. I've gone over my diet, water intake, and anything else I could possibly think of that could be causing this, and i've come up with NOTHING! And I'm scared to leave the house and I have an appt with my ep in an hour. Any suggestions?

Its not pleasant but I think it happens to all of us. My is normally accompanied by muscle spasms too. Not really sure how to make them disapate, but i'm on my way to my ep to hand her a list of my symptoms and hopefully she will have some answers. Best of luck Nicole

Talking to your doctor about Midodrine. It has helped me.

Dearest~ You are not a wimp or a coward. Dealing with this illness alone is proof of that. I too have "chickened out" of a few tests because I know how it feels and would stop at nothing to make these symptoms go away. I cancelled my second TTT because at my first one I passed out and had an induced seizure. Boy that day still haunts me. But through my trials I am also learning that although they might be uncomfortable, and downright SCARY. . .we must go through with them, in hopes to find answers. And the best place to become symptomatic is in a hospital, because they can do something about them if they become severe. I do hope your anxiety eases and you find peace. Nicole

Sara~ You are your doctor. Only you knows how this illness feels and how different medications are affecting you specifically. Real doctors can only guess and make suggestions, but you are the one dealing with the side effects that could be causing you to feel worse. I too would choose headaches over my dizzy/potsy feeling anyday, and until those around us have experienced this illness. I feel that they have no clue to what they are talking about. You do what you think would help you the most, and try talking to your doctor. Best of luck! Nicole

It's definately a potsy thing, an uncomforatble one at that. I notice it at times when I'm symptomatic, at also at times when I lie down. It can be caused by blood rushing to your head. My medication also increases this pressure like sensation, along with tingling/numbness. I wouldn't be alarmed but if you would feel more at ease, ask your pcp. Best of luck! Nicole

I have been experiencing alot of this lately too. Its a naggin', dull ache that just won't go away. I find that heat tends to relieve some of the discomfort and making sure that I stretch my muscle no matter how bad they hurt. My legs are getting so weak, they shake when I walk. Do you have this too? Hope you find comfort from your aching!

What an inspiration you are dear Lisa. It is a long, hard road but we musn't give up. I do hope you find relief in this mediation!

Thank you all so much for your positive reinforcement. I am STILL recovering from Saturday, but the headache has finally left. I know I overdid myself, and my bf keeps reminding me that when he tells me to sit down, that means sit down. lol. Oh, how I want to be like everyone else without a care in the world. Maybe in time. . . Thank you all again! Nicole

CONGRATS! Way to fight the anxiety and i'm glad to hear that you had a positive day too. Hopefully, this will help ease your tensions and make it easier for you to work. Take BaBy StEpS

That's what I would have suggested. When my family gets sick, I stay somewhere else because I know if I get the bug, it'll be 10x worse and I'll end up in the hospital. I'm sure she understands and doesn't want to make you worse

I was eating dinner and i my jaw went numb Let's just say, it wasn't pretty.

You would think there would be, but I guess since our bodies are supposed to do it all by themselves there really isn't much out there. (YET) Increasing fluids and salt does help, like others mentioned. And of course there is midodrine. This is what I ended up taking because I couldn't handle taking florinef. It does have very interesting yet distrubing side effects, but if your used to your crazy pots symptoms, its worth a shot. The other negative thing about it, is that it only lasts about four hours in your body. So, you have to make sure you take your dosages or you'll be on the ground. . .

I have been on zoloft for many years now, but I do remember when I was put on it that it can cause nausea and many side effects. But I will tell you one thing, it has given me my life back. So if you can I would stick it out and see if it helps because the good might outweigh the crummy side effects. They might taper off within time. I would suggest calling your doc and making sure that this is normal in your case. You might also be feeling dizzy, etc because we are all so gosh darn sensitive to all medications. Best of luck! Nicole

Before I was diagnosed with POTS last month, I was doing research and came across the same information. Which was really disturbing to me because I had all the symptoms and I live in one of the most highest known counties for lyme disease. So I got tested. Good to know that I didn't have it, but I am still on my quest to find out what brought on this illness. . . Best of luck! Nicole

Mari, Mine tends to vary~ from the usual lightheadedness to the worst. Usually for me, I have a constant feeling of off balance along with a little dizziness. Kinda like I'm on a boat. It then goes to the not so pleasant can't hear anything, everything I say doesn't make sense, can't breathe, lost kinda feeling. Then I know it is time to get my butt down, or I'm going to be going down. I try not to let myself get this bad cause it takes so much outta me. I also notice trouble with my vision and numbness. Nicole

The mornings are the worst for me, followed by the late evenings. In the morning I feel as if I never even went to bed I'm so groggy and exhausted. And in the evening I have used up all of my energy. . .if I even had any for the day. Nicole

Boy did I have a doozy of a day. I went up to a thing called Motorcross up in Harrisburg. (a hick thing, hehe) And I was pretty nervous about going cause I didn't wanna get sick, but I thought ya know lets try it anyway. Well, I had a Great time and didn't realize that I had been walking around for WAY to long till I went to go up some stairs and I couldn't breathe. It was like I was stuck on that dumb TT, and they wouldn't let me off. The rest was almost a blur... I ended up walking into a wall and thats when I told my bf and our friends that it was time for me to sit down. I literally just plopped down on the ground. Then came the horrible headache and I had confusion so bad I couldn't make any sense of anything or talk right. The words came out in random order. So we tried to get me to the bus.... BIG MISTAKE! My bf was basically carrying me cause I couldn't walk and my legs were giving out. I tried drinking water when we finally got there, and I threw up on the bus. GROSS! All i know now is that I just woke up from sleeping 15 hrs and I still have a horrible headache and my eyes hurt. So much for having fun! Nicole

My dearest, I know how you feel. It's like we create this safe haven for ourselves, a place where we feel comfortable and its okay if we get sick and there's those around us who know whats going on and how to help. I am struggling with this too. I want to go out and do things but sometimes its just so frustrating when you do and you get sick, and end up back at home. Seems like we shouldn't leave at all, but we must. I know anxiety makes EVERYTHING worse, especially since I have had anxiety disorder for EVER. But, please do be careful if they put you on medication. I unfortunately was put on a medication which could possibly be making me feel worse now, nearly six years ago. And im only 19. I have begun with the doctors to lower the dosage and now have to go through withdrawal symptoms along with my pots. They will help temporarily, but don't rely on them. Hope your feeling more relaxed soon! Nicole

I do hope you start feeling better soon and they have some answers for you at Vanderbuilt. In my thoughts and prayers, Nicole

Hi I experience it all! I'm not sure why but im believing it to be because of pots. I do hope your feeling better soon. Nicole