AshleyPooh

My third dose around 5pm was a lot less horrible than the 1pm dose. The funny scalp thing is still around, but the chills and goosebumps have lessened. It might just take time getting used to. I felt less fatigued this last dose as well. We'll see though tomorrow if it stays that way or if i'm immediately back to chills/ goosebumps. I hope it works, b/c i'm sensitive to just about every medication, and who knows how i'd react to anything else they gave me. also, maybe it is increasing my blood pressure, and i just don't realize it b/c it's right after the tilt test and my bp has been super low since.

Thanks Alex. Also, no it's not my pet bunny ( although I've owned bunnies before). It's a pic I found off the internet. I call it Armageddon Bunny- b/c it's cuteness will end the world I have an obsession with cute animal pics.

Hi all, I started my midodrine 2.5mg 3x day today. I'm getting some rather nasty side effects, and wanted to see what you all think. first, goosebumps and chills. They are so horrible!!! I'm alternately freezing and burning up! Please tell me this goes away soon and I can continue taking this medication. Also, I kinda feel worse on the medication than i was off!? I feel tired, mentally fatigued, not wanting to stand up or move at all really. my blood pressure is still falling when standing, going from 117/68 sitting to 85/57 standing ( probably lower if i stayed standing). Is the dosage just too low you think? Or does it take longer to really start working? I have to go to town in a few, and I'm worried about walking around at all really. I'm worried I'll have a faint attack, the way I'm feeling. If I'm too sensitive to midodrine, what else is out there that I could take that would be easier on me?! (for low blood pressure) Any ideas would be a real relief!

Alex: I'm definitely needing longer than one day to recover, just like you said. Yesterday I was in the store, and almost fainted. We'd been walking around costco a bit, and we'd switched stores, and as we were walking I realized I was feeling rather warm. My aunt commented on me looking flushed, and we both looked at each other like ' oh.... ok' and immediately sat me down. I was feeling bad, but with the help of the scooter carts ( felt like an idiot riding around in it but what else can one do?), I was able to continue shopping without further incident. I did have my bp monitor in the car, and when I checked it was pretty low ( 95/39 i believe it was, pulse 41) . It gradually stablized, but I had to be careful the rest of the night. Today I feel a bit dizzy headed too. I took my first dose of midodrine at 9am, but it doesn't seem to be doing much to my blood pressure. Second dose just took at 1:08, we'll see if it does anything. I'm on 2.5 mg, so if that doesn't work i'll have to talk to the doc about a dose increase. How long did it take for midodrine to boost your blood pressure after you started it? Just curious

Freaked, I do believe that NCS and vasovagal syncope are the same thing, just different terms. Alex: did you have actual fainting before your ttt? I'd never gone anywhere near to fainting before until the test. I suppose I just kept myself from getting too bad, and didn't realize how many things i'd been doing to help myself ( like sitting down, flexing legs etc) I realize now why they stress to you not to do anything physical after the test. I feel like I've been on the edge of having some sort of episode ever since. Over heated, wobbly, etc. I'm being careful though, so hopefully by tomorrow I will feel just fine

Today's tilt table test came out quite strongly positive for syncope. I wasn't standing but a few minutes before I went down like a bag of bricks, no nitroglycerin needed. I was pretty shocked, as I'd never come close to that before, but as my doc explained to me, I'd always had coping mechanisms like moving my legs and stuff, or sitting down before it got too bad. Since my doc says i'm so 'brittle' (meaning I reacted so strongly) , she is skipping just the non medicinal therapy and putting me on midodrine, the lowest dose which i think is the 2.5? to start with, and we will monitor from there. Meanwhile, she says i need like 60 oz of fluids a day, more if i'm in the heat, i need to eat lots of table salt, and to take my meds 3 times a day. I'm so happy I got answers today. I was so afraid I wouldn't react at all, and everyone would think I was crazy. Little did I know that I would react more strongly than most of the people that get the test. The doc says most people need the nitroglycerin to react, but they didn't get anywhere near that time frame before I was going down. I feel pretty rough though, tired and ' washed out' as they say. I am going to take a nap to recover, also ate a big salty meal

Hi all, I'm pretty well versed in POTS now, but I don't hear much on here about NeuroCardiogenic Syncope. I saw one person who just was told they had it, but I realize that I'm not all that sure about the symptoms of it. The reason I ask is b/c I thought my symptoms were POTS symptoms, b/c they were so ongoing and chronic. My blood pressure drops and stuff sound like Syncope though. 1) can NCS cause chronic symptoms, not just episodic symptoms? I feel tired from standing all the time, not just sometimes. I don't faint, but I get out of breath, have to sit down, can't tolerate heat and other things. 2) If you can have both POTS and NCS, would having both cause low blood pressure with drops and also faster heart rate? My hr doesn't go super high, just not normal. Also if you have NCS, what kind of treatment are you on that you feel works for you? Not just to control fainting episodes but the chronic fatigue and intolerances that come with it?

This is all very interesting. I have my tilt table test tomorrow, so I'm expecting some interesting results. My bp drops and heart rate goes up, so I'm assuming I'll probably get the NCS diagnosis as well. I experience at least some degree of NCS symptoms at all times whenever I am standing, so I totally agree to call it a 'reaction' rather than an illness seems wrong somehow. Also, after whatever diagnosis I get, I am making sure they rule out any other possible cause, like adrenal dysfunction among other things. don't want to treat the symptoms if i can treat a condition. But we'll see! I'll report back tomorrow to let you know how it goes. Thanks for this post, it really helped!

Lol , spinner! That sounds rough. I've had that happen too, with savella. Was jogging in the middle of the night in my bathroom, singing ' she's a maniac' to myself. Mania (hyper,restless etc) has got to be one of the nastiest symptoms ever.

i suppose the posture change might have something to do with it. floating around horizontally, then standing up to get out of the pool might cause a blood pressure drop?

i wonder why anti depressants are so horrible for us? I tried to titrate onto a normal dose of Savella once, and was nauseous and vomiting, had to give up since i couldn't even stomach the smallest of doses.

Considering I feel that ' very heavy feeling' just from standing around outside when it's warm, sitting in 89 degree water would definitely cause those symptoms to worsen! I would suggest a cold water pool for sure. I am curious about this though, b/c i am about to start swimming therapy to get into better shape, and was worried about the heat factor too. hoping the water is cold enough to counter the sun's effects.

I found out just today, that narcotic pain medications apparently are on the list of ' do not take'. I've been having heart flops all day! so annoying! Ah yes tramadol. i tried the time release kind once, called Ryzolt. wound up breaking out in a rash on my back, and feeling bug eyed for the entire day until it was out of my system! I sure hope I don't react badly to hydrocortisone. I am wanting to get my adrenals tested, and if i need that medicine, to have problems from it would be terrible! I did the saliva test for cortisol a year or so back. My morning cortisol was 3 ( range 13-25), while the rest of the day was normal. The problem with that test, is that i had been taking prednisone for a few days b/c of sinus swelling, and am not sure how it affected those results ( i was off of them about a day or two before the test) . didn't realize that it would affect it until later :/ Not sure if it raised my cortisol, or reduced it. I really need to get tested by the doc

Yeah benadryl actually is supposed to make your blood pressure go up a bit, but with me it always lowers it! As for cough syrups, i can't take anything that could make me restless, like the sudafed. it is a nightmare. it keeps me awake and makes me nervous. As for the muscle relaxants, definitely made my bp a bit worse, but the heart palps were really the main issue. Yeah, trial and error ***** But that's why i guess we only take what's necessary, and not random things folks might suggest would do us some good.

Hi all, I thought I'd ask this question because, frankly, I'm tired of running into a medication that gives me unexpected problems. The other day, I tried taking part (not even a whole tablet) of a muscle relaxant to help my muscle knots caused by Myofascial Pain. I took it before bed, went to sleep, and the next day, my heart was flopping so badly it became extremely distracting. I know they are called premature beats, but flopping feels more how the sensation feels. It actually got a bit scary, because my heart was flopping , not just once in a while, but multiple times in a row. At least a few times it flopped like 3 times in a row, you can imagine how that felt! If my sonogram hadn't come back saying my heart looked good, I would have taken myself off to the hospital. I'm almost positive that it was the muscle relaxant, and .. will never take that crap again. But I wanted to know what other medications out there bothered YOU. Anything out there drop your blood pressure? Anything cause tachycardia or heart flops? Let me know!

Honestly, you kind of sound like you are going through an adrenal crisis. Did they check your adrenals (cortisol) at the hospital? I would find out. If not, you need to go back and demand the test because weight loss, dizziness, vomiting etc are signs of adrenal insufficiency gone serious. If you have a primary doctor, you might call him/her and ask to get you tested for adrenal insufficiency.

Just remember, that even if they turn you down this time, there is always next time. My brother was turned down once before he got his disability for his spinal arthritis and mental issues. Just try not to get flustered. Be respectful, but make sure you tell them just how bad your condition is. Even bringing in some paperwork describing your problem might help. Make sure you have a supportive family member waiting for you, because you may feel upset/ flustered/ excited afterward and that could cause you issues with your condition. And good luck! Hope you get it

If there is a trigger, stress is probably one of them. I've been severely stressed this week

Interesting. The worst place for me is between my shoulder blades. My nurse practitioner was so impressed with my muscle knots once she was actually showing them to a younger nurse " ooh see how tight this is?" ... felt a bit weird lol. I have thought about muscle relaxants, but every time i take them they linger in my system so long, make me kinda loopy and stuff, plus i think it aggravates my bp and pulse issues like some of you said. But i'm in so much pain today, I might take one tonight to help me sleep through it!

Hey all I remember reading that at least one member here had a son who had myofascial pain problems. I wanted to ask the rest of the group how common this is? I have myofascial pain. My muscle bunch up into knots all the time, causing quite a bit of discomfort. The past two days it's been so bad I couldn't get much sleep. The heating pad helps a tiny bit, but they are so far gone now i need a massage to help work them out. Anyone have myofascial pain issues as well? And what do you do about them? Has any of the treatment for POTS helped this particular problem?

I have Hashimoto's thyroiditis. I mistook my pots symptoms for the thyroid just being not treated properly for a long time. First, I will say: TSH is not the best indicator of your thyroid. Get your T4, T3, and Free T's tested as well as antibodies. There are things that can suppress the TSH and make it seem more normal than it is. Secondly, if you worry about thyroid cancer due to nodules and enlargement, just know that the survivability rate of thyroid cancer is like 95 percent! All they have to do is yank that sucker out and put you on medication, and removing the thyroid is not dangerous if you are on meds, it's not needed. So even if anyone comes back with thyroid cancer, just keep that in mind!

Hmm I am the youngest of three children. My oldest sibling, a sister, died not long after birth from heart and organ defects ( a very rare condition) My older brother, who is 29, has ankylosing spondylitis (spinal arthritis) and had WPW ( a heart defect that caused atrial fibrillation until surgery corrected it) I am 26, have thyroid disease, allergies, unexplained digestive problems, and now this. Started having symptoms a few years ago, around the time of the thyroid diagnosis. Got bad enough to go to a doc about it a little over a year ago, when my blood pressure really started messing up.

I don't have a sweating problem, as I hardly ever sweat. But I still wake up dehydrated. In fact, I wake up multiple times during the night with my mouth as dry as the desert. i take little sips whenever i wake up, but it never helps that much. I use the bathroom multiple times at night as well, maybe losing the fluids there?

My mom had to give up on perfume ,body mist, skin lotions with smells, fabric softeners, any strong smelling detergents,etc etc my dad used to spray febreeze and I'd just about lose my mind getting out of the house and away from it. :/ i know how you feel. Avoidance is my only solution to offer you It's interesting that so many of us have this sensitivity though. People make fun of me when I go down the cleaning products aisle at the store, at a dead run to get through as fast as possible lol

Thank you all for the thoughts and prayers. I am trying my best to take care of myself, and my relatives are really helping too. I'm having to be more active now than I was before, which is wearing on me, especially in the heat, but so far no dramatic problems. The flops have settled down, thanks to me calming down some. Thanks for everyone, hope to give you some news by the end of the month on my testing.