gdomaracki

If I could obtain ANY superpower in the world, it would def be the ability to cure POTS and all dyautonomia related illnesses!

I can relate. My own mother doesn't understand what is going on with me, and even questions the doctors about this "illness". (as she calls it) She doesn't understand how one minute I can be fine, and then the next my heart is racing and I can't breathe. I also feel like people don't believe whats happening to me, but then I get on here~>to regain my sanity and assure myself that it is. I don't live in a dorm, but I do know what its like to have to take baths. I take at least three/four a week bc I feel that bad. Keep your chin up and if you need someone to talk to, just pm me!

I began taking 30 mg of mestinon on Saturday, and the docs are already putting a hold on it. I was nausated all weekend with extreme fatigue. This morning I woke up and everything was blurry and then my heart took off. (...thinkin' svt?!?) Then came the near syncope. Passing out is my BIGGEST fear, and I come close alot. All i know, is that I was scared to death and it happened twice. I'm not sure thats it is related to the medication. . .Did anyone have these side effects or do u think its just pots? I also am having fatigue so bad my legs keep giving out, and I end up falling down. I noticed an increase in anxiety and I feel more tachy then I have been. Any thoughts?

I just started taking mestinon on Sunday and I have been nausated ever since. I also am having extreme fatigue, so bad that I have been falling. I also had two bad spells this morning where everything got blurry, and my heart took off. We are not sure if they are related, but they want me off of it until the end of the week. I too was only on 30 mg x1 daily. Best of luck!

As goofy as it sounds, I use a pill case~ just like my g-ma and im only 19. It helps me remember what to take and when to take it. Especially since my brain went on vaca from POTS. lol. I also learned this rule of thumb one day when i wasn't sure if i took my meds or not. If you can't remember, don't take it cause the risks of overdosing are so much greater and most of us are real sensitive to medications. Hope your palps go away and you can get some rest. G-night!

Thank you everyone for your advice. I think I just need to vent and until i can get health insurance, this is the only place too. Especially because you all understand, and its only been a week since I was diagnosed. Thank u all again!

The more i learn about this illness, the more i die inside. My hopes and dreams of enjoying my life are being crushed. And i almost don't see a purpose living like this. For goodness sakes, im ONLY 19 years old. I had my whole life ahead of me~ and now its G O N E!!!! Worst of all, how am i supposed to find someone to marry and have kids when i can't even take care of myself. I don't want to drag anyone down to the **** that i'm now living in. i feel like this is some sort of punishment~that i don't deserve. knowing that im never going to get better makes me not want to do this anymore. i just want to give UP!!!

Well, its been nearly six hours since i took my first dose of this new med and i have SEVERE nausea and have been puking and laying down all day. I am also have extreme weakness in my lower extremeties Not happy!

Aw, I feel terrible for you. It soOoO scary when all this is happening to you and you can't do anything about it, even getting up to get help! I've had spells where I just get so confused that I barely remember my own name and nothing that comes out of my mouth makes ANY sense. (i am blonde tho.) Especially in the evening I have gotten to the point where I don't remember anything, and that scares me too. I'm not sure if the burning sensation is normal, but i have it too! You are not alone, when i first got diagnosed with NCS i kept complaining about this burning sensation right before i would pass out and these muscle spasms in my stomach and legs and im sure they thought i was crazy. Now after being diagnosed with POTS, I have found that these "weird" symptoms will occur...just our bodies way of telling us that something is not right. I do hope that things get better for you! I too have had a rough past two days, its like my brain went on a vaca and nothing wants to function right. And i have no energy! You'll be in my thoughts Best of luck, Blondie*

Persephone, I too notice that is worse around that time of the month and i have mentioned it to my doctors but really haven't gotten a response to whether thats the case or not. Do let me know if there is a correlation if you find out?

I too have trouble with heaviness in my chest soOoOo bad sometimes, I swear i'm having a heart attack. I know laying down helps, along with my medication but it's an uncomfortable feeling I am getting "used" to. I also have trouble with my legs and feet feeling heavy. (and numbness too) This is from venous pooling when we stand up. . .all the blood is RuShInG to our feet from gravity. Now if we had a normal functioning nervous system, it would take care of this for us. But we ALL can't be that lucky, lol. Keep on smilin' and lifting those heavy legs, it only gets worse if you don't walk around. (your othostatic tolerance will degenerate) Oh, and you could try compression hose although they are uncomfy and make me feel 100 yrs old. lol. Best of luck, Blondie

Have any of you been put on pyridostigmine/mestinon? Reactions?

What a WONDERFUL valentine's day blessing! I wish you the best of luck!

Amy, I have been having the same problems for the past few months. I literally lie down extra early just so I can try and get a decent nights rest. Once I get to sleep, the littlest things will wake me up, and I begin the process of trying to fall asleep again. I also experience very vivid dreaming?!? Don't know if anyone else gets this, but it gets to the point where I will wake up in a cold sweat. I did some research about my sleeping patterns and found that POTS will cause restless sleeping because you create so much extra adrenaline during the day from the racing of your heart, that it can keep you awake at night. Hope you get some good rest soon! I know i need it

What works for one might not work for someone else, but I guess as POTS sufferers we must try whatever medications come out to try and eliviate our symptoms. I know when i started midodrine, I felt worse but that was because they didn't have me on a high enough dose. I was hesitant to increase, but did so and am able to get up without svt. I wish you the best of luck

Midodrine definately will create some odd and irritable itching! I started taking it just a few weeks ago, and thought i was crazy with the numbness and tingling sensation that I got especially on my scalp. But with some research, I found out that it wasn't just me. lol.

I know what your going through all too well. Just keep moving around, at least that's what they tell me or it will only get worse. (orthostatic tolerance, that is) And the tacch. at night is my least fav, it makes me feel as if i'm running a marathon. I can NEVER get enough sleep. Best of luck to you, its good to know tho that there are others out there dealing with the same symptoms as me. I'll be prayin' for you.

Just out of curiosity, who is Dr. Grubbs? I am new to all of this.

Im strugglin' with pots too hunny and i was just diagnosed the other day. I feel like I've had my life taken away from me and I don't know what to do, what kind of treatment to follow, or what kinds of medications to take. Keep your head up and keep prayin'

Well, where do i begin?!? Just five months ago, I was living the normal life of a typical 20 year old. Working full time and going to college. Around the beginning of december, I began passing out and feeling weak on a day to day basis. After NUMEROUS tests, hospital visits/stays, monitors, medications, and hundreds of doc visits, they give me a diagnosis of pots syndrome and neurocardiogenic syncope. Why this has happened to me, the doctors have no clue and neither do I. All I know is that they tell me for now that I can't drive or work. . .and basically live my life. Everyday is such a struggle, a new challenge. I'm finding it so hard to accept the fact that there really isn't alot of treatment out there for these illnesses and that I might have to suffer with this for the rest of my life. I take midodrine so that I can get up everyday without severe svt, yet if I remain in an upright position for over an hour, I am almost sure to feel faint or pass out. PLEASE, if you have an information on any types of treatments that have helped you or want to chat, I need some kind of understanding to all of this and some friends to help me thru this.