It'sMyLife

Do you mind if I ask why a heart transplant would be necessary?

Wow, thanks for this info. I'll mention this tomorrow. I feel very blessed that the doctor I have seems to really want to help. And, I don't get the feeling that he would just balk if he didn't know how to help me. He seams humble enough to admit if he's not sure or thinks I should ask another specialist.

I will be asking my doc tomorrow what he thinks about the possibility of me having the "hyperadrenergic" type of POTS since my bp's are high at times and low at others. I'll post what I find out tomorrow.

I am about to find out tomorrow if I'm eligible to participate in a study of this drug. The nurse called me today and asked if I was interested. My Cardiac Electrophysiologist will be the doctor hosting the trial location where I will participate.

This drug is primarily a norepinephrine precursor and a vasoconstrictor like midodrine but with a smaller side effect profile. Its not one of the medications that relate to Parkinsons. It is being avoided in POTS because some doctors believe excess NE is a problem for POTS patients. This is interesting info because the doc that just diagnosed me with POTS asked me today if I wanted to take part in the study he conducting with the drug. I go tomorrow for me initial evaluation. I'm hopeful but trying to be realistic. I'm sure we've all been there were we get to thinking what if there was just that one medicine that could make us healthy again.

I was just asked to be part of this drug study. I go tomorrow for my first eval to make sure I can take part. I'm excited but trying not to get my hopes up since the midodrine and fluoxetine were both failures for me.

I have to say if that were to happen to me before getting my POTS diagnosis I have no idea what I'd do. I'm sure I would cry for days. But, if a new doc did that to me now... look out. For starters, I would write a letter to the medical board. You have a diagnosis that has been confirmed by previous docs and there are well-renowned doctors who specialize in treating this disorder. They are obviously more successful in their careers than he is. So, for him to blow off your Dx (let alone insult you and ask you about Munch.) after reading notes and not even performing any of his own testing, designed specifically to Dx ANS disorders, is mental abuse to a patient. And, I'm not as familiar with medical laws as I am with dental laws, but it seems like it could border on malpractice. It was negligent on his part for sure! I am saying all this like we ever have the energy to sit and write a formal letter to the medical board. But, if you ever have it in you or have a good friend who would be good at that then I think it would be worth it. He won't lose his license but it will start a paper trail (or add to one that might even be there already!) I filed a complaint with one of the nurse practitioners here on the base (Air Force) at the women's clinic. It was actually followed up on and I was told by the administrator in charge of patient relations that at this point there's not much she can do since she's never had a complaint like it before. I told her (even though it wasn't really helpful) that one of my good friends had a poor experience similar to mine with the same NP and she said she really wished she'd have filed a report too at the time it happended. Then, she might be able to to more. And, I later met one other friend who had a poor experience and felt insulted by the same **** NP. So, the moral is that we should all report these providers to the best of our ability. Because if we just put it behind us (as is natural to want to do with a painful experience) then it will just keep happening to others. I wish you the best of luck and I just wanted to reach out and hug you after reading your post. Hang in there! You're not crazy!

Thanks, flop!

Thanks, Flop! I'm actually a dental hygienist so I know how to take a standard bp/pulse. I still have my steth and sphygmo from school. I just never looked into what "palp" meant after I heard it in all the shows in like ER and Grey's. Good explination-thanks again.

Wow, that's a pretty low drop. Do you mind telling me what the palpable means in regards to heart rate/pressure? I've heard it before but never thought much about it because I didn't think it pertained to me.

Holy cow! Good to know after you passed out, huh? lol Thanks so much for the info.

Oh yeah, I know how the diagnosis is made. My pulse went from 74 to about 130. So, 60 bpm increase! More so asking about the nitro's effect on bp I guess. It was obvious in my case that they didn't have to add nitro to get the POTS Dx. But, makes me think they were trying to find out how my POTS operates. Just dont' know what the results I had after Nitro imply.

Thank you! After the test my doc said it looks as if I have peripheral POTS. Does it sound like the nitro results would have told him that? ETA: Looked at my test results and my bp fell about 20 to 30 points over the last 15 mins. Started at 132/95 at nitro admin time and got down to 106/75 eight minutes later. Then went from 113/79 to 125/93 in the last two minutes before lying back down.

I get this if I sit on the floor or a hard chair. Haven't found a solution yet. My hands also fall asleep though while I'm sleeping if I place them on my chest while lying on my back. Just far enough above my heart I guess. I hate it 'cause I like to sleep that way!

I was given nitroglycerin with 15 mins left of the TTT. I didn't feel very different after it was given. For some reason I didn't ask what it was used to measure. Can anyone tell me?

I live in NC and have Tricare insurance (through my DH with the Air Force). I have not asked my PCP for a referral yet since I just got my Dx last week. But, I'm looking around because I'm pretty sure they'll have no idea where to send me. I'd love to hear your experiences if you seen this doc or any other ANS docs in NC. Thanks for reading!

I was just discussing this with a good (not just close, but good) friend of mine the other day. We were talking about how my DH probably gets tired of hearing me complain. I told her I totally agree, because I get tired of hearing myself say it. Then, I added, "but, if I don't complain, he assumes I'm feeling good and expects too much out of me." Sometimes I don't know where the middle ground is either. I suppose I could talk with him and tell him I'm going to try not to complain on the condition that he asks me how I feel before asking/expecting me to tackle a stated task all on my own. I have also decided to try to update all of my friends and family on my condition by computer as well and then I don't have to spend precious chat time telling them where I am with my fatigue and frustration. The one question that's been hitting me hard lately is when, or if, my DH and I are going to have another child (we have one DD born 4/2007). Some people I can be honest with as to why I'm having hesitations. But, with mere acquaintances I find myself unsure of what to say. I guess I just feel inadequate as a woman simply saying one's all I can handle (when, in all honesty, one's too much most of the time). I find myself telling people-and it's what I told people before my diagnosis-that I'm just not a very high-energy person. I try to make it sound humorous. I, too, am very grateful I have the people here to relate with. If I had been going through this as part of my mom's generation, I don't know who I'd turn to for support.

I just got my official diagnoses today and, naturally, starting to have a lot of questions. I know this could be three or more separate threads, but I'm hoping to get as much info as I can out of this one. First of all I'm wondering if I should really be starting Midodrine when my bp appears to have risen during the TTT along with tachycardia. I was given very specific instructions for monitoring my bp so I won't let myself get in a dangerous situation. But, I certainly don't want to take something that might make me feel worse if even for a day. I have a two-year-old to take care of by myself during the day. Thinking now a weekend would probably be best to try it for the first time since my DH will be home. OK, having said that I was looking over the Mast cell info with the links and found some stuff there that made references to hypertension with POTS. I read something about hyperadrenergic POTS vs. non-. I don't fully understand this. Is this why the nurse administered the nitroglycerin spray with 15 mins left of the TTT? -to test my hyperadrenergic response? My doc told me it looks as though I have the peripheral type of POTS which is the better to have (didn't say as opposed to what). I didn't ask him what that actually meant at the time because it was about 2:45 and we had been at the hospital since 8:30 that morning for the TTT. I guess I was eager to leave and happy to have a Dx finally. I also figured I could just go home and look up whatever I didn't understand, but not having as much luck as I anticipated. lol Go figure. I will appreciate any info you have the time or energy to give me. Thanks for reading. PS. Tried to edit my error in the title but didn't have access I guess. lol

Hi there, I just got my official diagnosis of POTS and was doing a search for bladder pain because I'm worried about the proamatine causing a problem for me in that department. I was eval'd (but not officially tested as doc didn't think I fit the bill) for IC because I have a lot of the symptoms. I have also experienced the pain you're describing but I don't believe mine was as severe. It was like a light bulb moment after reading your post that makes me wonder if it's related to the POTS after all. The one thing I do have is a direct correlation between symptoms and the food/drinks I consume. It took a long time to figure out the culprits but it finally happened after I had to go on an elimination diet for my daughter while I was breastfeeding her (food allergies). So, I'm wondering if you've gotten any answers from your medical providers since you posted this. Hope you're doing better.

I had several tests to rule this out after my urogyn saw some sort of lump outside of my bladder from the inside while scoping my bladder. They were all pumped that they might have figured out my mystery illness that I've had for years and gave me literature she printed out. Then the 24-hour urine test and MRI was neg and it was like they didn't care about the rest of my symptoms anymore. Just back to the plain ole bladder. Fun. BTW, they never ID'd the mass she saw from the inside. I think it was just my intestines pushing on it from the look of the MRI. I'm not a Radiologist though.

Thanks for your reply.That's what I thought would be a possibility. I guess I'm worried it would mask the symptoms or reduce them and the TTT would be less accurate. Does anyone think this is a valid concern. I haven't actually read it anywhere. I'm just thinking out loud. It took 4 weeks to get in for the test and if my symptoms start improving from the pill then I would prob want to go off of it and do the test again. But, I would be happy that the symptoms improved! What do you think?

I have a TTT scheduled for next week. I was going to start b/c pills tonight but had a quick thought that I should check to see if anyone had a change in their symptoms after starting them. Thanks for any input you can give me ASAP.

I just read a few days ago that salt without the florinef is usually not very effective because our kidneys will just work harder to get rid of the extra fluid and that's what the florinef stops them from doing. Anyone know anything about this?

My bp has been normal sitting and standing but I've only taken it once lying down. The headache's not worse lying down though. I had hbp 3 years ago and I haven't fealt like I did then. I'll watch the bp lying down though. I didn't take the Florinef today and I'm gonna call my doc in the am and see what he suggests. Thanks! I'm still waiting on my electronic bp monitor in the mail so I haven't been real diligent with the manual cuff.

Thank you for the great info!