StacyRN

Melissa, I read your Vanderbilt Chronicles thoroughly! I'm scheduled for a POTS study in April at Vanderbilt. I already have a diagnosis of Hyperadrenergic POTS, but I want to be in the study whether or not I get much out of it this time, because I think it is important in the big picture to further the research into POTS for the future, NOT just for myself. If I get some help out of the trip, I will be THRILLED! But I will be just as happy to have been a part of furthering the research into this medically misunderstood condition! I just think it's important to realize that even if participating in a study doesn't help us individually, it can help us as a whole... and I've read most of the papers written by Dr. Raj, and I have Dr. Robertson's book "Primer on the Autonomic Nervous System", which has some good chapters on dysautonomias! They ARE learning more, thanks to people like you! Thanks, Melissa! Stacy

Chris, Let us know how the study went for you! I am scheduled for April 19-30, and I would love to hear what you thought! Stacy

I want to add my thanks for your thorough account of your experience at Vanderbilt! I have just been scheduled for April 19-30 (this is 2010) for a POTS study. I am very excited about it, but was getting apprehensive, and your account was so good to read so I would know what kind of thing to expect. Thank you again, SO MUCH!! Stacy

"So WELCOME to a group no one really wants to be a part of. " I like this quote! Stacy

Lieze, my heart goes out to you... I can sure understand how it's too much to go into, and probably too painful to hash over also... if you ever need anyone to talk to though, you can message me, or here is my email: sreedrrt@yahoo.com I remember hearing about one woman with POTS who had it when she was a little girl, and her mother and father beat her and locked her in a shed many times because when she was doing chores she would faint sometimes, and they said she was faking it. How awful, when you are really physically ill, and no one understands. I don't know how you do it, working, and 4 young children... I had 3 children I raised pretty much alone, and had to work, and DIDN'T have POTS at the time, and THAT was hard! My kids are grown up now, I'm 49, and wish I could get back to work, want to be an RN so much after all that schooling! Maybe this clonidine is an answer for me, it seems to be making me feel a whole lot better! I had a day today, a whole day, where I felt pretty NORMAL! And that isn't common Anyway, if you need someone to "talk" to, PLEASE email me, I'll be thinking of you, and I will always have a word of encouragement for you... Hugs, Stacy

Lieze, That is just AWFUL the way your parents and husband treated you!!! Oh, I get so mad when I hear things like that... they have NO IDEA how awful this can make you feel! I have been a respiratory therapist in a pediatric intensive care unit for 15 years, taking care of kids on life support, etc., and I just became an RN in June 2009. I got really sick in Sept. 2009, just 3 months after starting my new RN job, and I had to search the internet too, because no doctors would believe me! My friends and family (luckily!) believed there was something wrong, because I have been a hard worker and am definitely NOT a wimp! If I hadn't found the diagnosis myself, then had it confirmed by a specialist (probably helped that I had an extensive medical background) I never would have known what was wrong, never gotten help, who knows what would have happened to me, because I'm on disability right now cuz I can't work. You tell your family that they'd better be kind to you, and get the DVD called "Changes" available on the dinet website, it helped my friends understand what I was going through. Do you have a good doctor who understands POTS? I sure feel for you, and it's wonderful that we have this place to get encouragement from those people who DO understand! All the best to you, and your husband had better quit throwing your bp machine... grrrrrrr! StacyRN

You definitely have the hyperadrenergic POTS! That is a very high norepi level, and research shows clonidine is helpful for this... why won't they give it to you? What do they say about why they won't? I'm not sure midodrine is something you should be on, because it tends to aggravate the hyperadrenergic feeling from my experience. And propranolol is said to have a more calming effect than metoprolol, so my doc switched to that and I think it's helped too. Klonipin helps the anxious adrenaline feeling... Let me know if they will tell you why they won't give it to you, because I can tell it's working and it's only been 3 days, I have more stamina to get a few things done... let me know! Hang in there, Stacy

I totally agree with you, Dianne, you explained it so well! That is what happens to me also, my pulse pressure narrows, sometimes down to a difference of 15! I feel the same way your son does when that happens. Thank you for explaining it so well Stacy

Sure! I've only taken it for 2 days now, but I do feel more sluggish, dry mouth, slow... I don't know if it's the 2 days of clonidine or a coincidence, but I'll let you know more in a week. But I don't feel as sick! Tired... sick... hmmmm.... think I choose tired! Almost all the meds I take slow me down though, so maybe adding the clonidine tipped the scale. I also take klonipin (anti-anxiety), propranolol (beta blocker), everything I take is for blocking the sympathetic (fight or flight) response, so maybe that's why I'm slower. Let you know in a week or so! So far, I like it tho! Stacy

Sure, Deb, glad to be of any help at all! And please let us know how it goes with the doctor, testing, etc., I will be thinking of you and hoping for some help for you! Stacy

I agree, it was great to read this article and know that the word is getting out, even if just little by little! I was also glad to see that the misconception was addressed about blood pressure... it seems like most people don't know that the definition of POTS does NOT include a drop in blood pressure upon standing, even though it happens in some people, it does not have to happen to be diagnosed with POTS. When I had a TTT the cardio said I did NOT have POTS because my bp didn't drop, even tho my heart rate increased by 44 beats per minute... which I later found out was not true. Many people with POTS actually show an increase in bp upon standing, especially in the diastolic (lower) number. Here's a link to a good article from Vanderbilt University Med. Center: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Stacy RN

I've heard of Dr. Thomas Ahern in San Diego also. He is apparently very helpful with POTS patients and is interested in learning about it and trying to help. I see Dr. Friday at Stanford, but if I were farther south I would definitely look up Dr. Ahern! There's a dr. on the dinet list in Fresno, CA named Dr. Thampi John... I would NOT recommend him, he says he knows about POTS but isn't really helpful at all... kind of brushes you off, no time for you, etc.

I had the blood test done at Stanford, CA, about a month ago, just the way they said (lay quietly before supine blood draw, then wait a bit for upright blood draw). Mine was definitely hyperadrenergic POTS. The literature says patients with POTS usually have normal to slightly elevated supine norepinephrine levels, but the upright norepi levels are usually around 600 or more. My SUPINE norepi was 604 pg/ml, and my UPRIGHT was 1,231 pg/ml... definitely too much norepinephrine, and my symptoms support that. Jittery, can't sleep, can't relax, exhausted, nausea, tachycardia, etc. So all the meds I'm on are to block the norepi... I'm on propranolol, klonipin, and now have added clonidine which is supposed to be great for the hyperadrenergic type. We'll see... Good luck to you! Stacy RN

Hi Deb, boy you sound just like me when I first found this forum It sure sounds like you have some form of dysautonomia, whether it's POTS, or NCS, or whichever type, it sounds just like some for of dysautonomia. I have hyperadrenergic POTS, which they found because my supine/standing norepinephrine levels were 604/1231... really high. There are many tests they can do, but it's hard to find a doctor who knows what to order, and even what the tests are for! I was lucky to find a great doctor at Stanford University in California, USA. I remember about 5 years ago I fainted when I was sitting at a computer at work, not stressed or anything, and I feel really sick even lying down or sitting a lot of the time, so it's not just when you stand up that you have the symptoms always... Good luck to you finding some treatments that help you, it's so individualized, you'll find out! I'm trying different things, and different meds, but I still am unable to work. I'm a new RN, so it's frustrating, but I'm not going to give up! Hang in there, and good luck to you! Stacy RN

I know what you mean! But regarding our health, ignorance is NOT bliss... ignorance is dangerous, and knowledge is power. Remember, you have LOTS of friends who understand what you're going through on this forum... we believe in you! Stacy RN

I definitely recommend Dr. Karen Friday also! I saw her in December 2009, then again in Jan. 2010. My next appt is April. After being brushed off by way too many doctors, I got in to see Dr. Friday, and she was wonderful, took her time talking to me, took my history thoroughly, did a physical exam, explained POTS, mentioned things I could do that would help, started me on some medications, I had already had a TTT so didn't do that there, but she did a supine/standing epinephrine and norepinephrine level, which was really elevated showing I have the hyperadrenergic type of POTS. (Supine was 604, standing 1231) Knowing the type you have is helpful in narrowing down which treatments will be most helpful. Clonidine is very helpful for hyperadrenergic pots, so she is adding that. Things that slow down my nervous system are the things that help me, so I am on propranolol, klonipin, and will now start clonidine. Dr. Friday has a nurse that coordinates things for her, her name is Kathleen Masket, and she is AWESOME. After seeing Dr. Friday, any questions you have are done best by email, and Kathleen is good about getting back to you with answers. One of the best things about Dr. Friday is that she understands that POTS patients have to do much of their own research due to lack of knowledge in the medical field, and this is not offensive to her at all! She doesn't get touchy when you tell her which meds you'd like to try, or ask about different things, she doesn't have a big ego that gets offended if someone tries to tell her something... that's a big plus for POTS patients, I think! She gets a 5-star rating from me! Stacy RN

Michael, I'm so sorry for what you're going through, but you are not alone! I have the same symptoms, and I have hyperadrenergic POTS. I used to shower and wash my hair every single day WITHOUT FAIL! But since having POTS I can't shower without getting the dizzy, lightheaded, ringing in the ears feeling, and having to lie down on the bathroom floor until the blood comes back into my head. Then I am so weak and tired that I sleep for about 2 days afterwards! And the nausea is awful... I keep telling my friends to shoot me, but they won't cooperate I use a shower chair, and it helps a little, but I still get really sick from the shower... my pulse is in the 160-180 range after I shower. POTS is the pits. Hang in there, though, there is lots of support out there from people who are going through the same things, and we all understand eachother! Hugs!

I get this too! It's because having POTS is like running in place when you're just standing still. You get short of breath and dizzy, and heart races. It takes a lot of energy to talk when you're short of breath. That's why they say one of the things you should avoid when you have POTS is SINGING! I thought that was humorous at first, but have found it's true! POTS is like having congestive heart failure, or chronic lung disease, and it's hard to speak with those conditions also due to being short of breath...

Oh, I definitely know the jittery feeling you are talking about, it is my WORST symptom, because it is so hard to live with! It makes me want to scream, and prevents me from sleeping, doing anything, and I just lay there MISERABLE! Taking Tramadol (which is a synthetic narcotic) helps to calm it down, but this isn't the best med to take, but it's all I know so far that helps. If anyone has any other ideas, I would love to hear! I will look into Klonipin and Clonidine, thank you!! And I hope you can find something that helps besides smoking... for the baby's sake! It's hard, because meds have effects too... I hope you find something that works for you AND the baby, and I totally sympathize with the misery you are feeling! Hugs

Wow! This sounds very interesting! I've never heard of such a thing! Anyone out there have any knowledge of this??

My ejection fraction is 75%, which is a really good thing, it just shows the heart is pumping efficiently! The ejection fraction is the percent of the total volume in the left ventricle that the heart pumps out to the body with each contraction. The more it's able to pump out, the better! I have never heard of a high ejection fraction being a problem... it's when it's low that the heart is showing failure, the inability to pump enough blood out to the body. If your EF is high, count your blessings!

Just to clarify, I don't have any arrhythmias, just tachycardia, and my omron errors when standing cuz pulse is too faint to pick up. My doc confirmed this and says it is common in POTS patients.

I've taken Zoloft for 15 years, long before I knew I had POTS, and I've never had any problems... I started with Prozac and had AWFUL side effects, so changed to Zoloft and only notice that my depression got better. Some are selective serotonin reuptake inhibitors (SSRIs), and some also affect norepinephrine reuptake as well, like Wellbutrin. Have to find what works for you.

Think I know why... my BP monitor would read Error many times when I was standing up, but then would read when I sat down. It's because when I was standing up my pulse was so thready that the machine couldn't pick it up, so couldn't get a pulse or BP reading, then when sitting it was a stronger pulse and would get a reading. Sometimes when I'm standing I can't even palpate a pulse myself because it's so faint and thready.

I agree, it feels like the POTS just doing its thing... does anyone know if palpitations are more commo with the hyperadrenergic form of POTS??