Notgivinup

Teachr4k, sorry this happened to your daughter too. And a 7 hr. drive! I just don't know what to think anymore. I'm giving it a rest.

Maybe he's too overwhelmed. I didn't expect a miracle either, but when the nurse told me to stay on the same meds, it was almost funny because with the exception of singulair.............. I PUT MYSELF ON THOSE MEDS. I figured out the combo and put it all together.

So what did he do for me? Tried one medication, and quit.

I hope and pray you find the right doctor for your daughter. I'm sure you will.

When I had my second TTT at Cleveland clinic, they also tested me for small fiber neuropathy. I have three tiny little scars on my legs to prove it.

The test came back positive. However no one ever discussed any form of treatment for me/it. I don't know if it was because it wasn't that bad or what, but at the time I was confused and very symptomatic, all I wanted was for my symptoms to go away. I knew almost nothing about POTS back then.

Since then none of the doctors I've seen ever mention anything about it, even when they see what tests I've had. Maybe it's time I research a little bit about it. I don't seem to have any symptoms. No burning or tingling.

I'm not even sure if I'm talking about the same thing you are. Hmmm, off to do some reading.

Willows, I'm so sorry for your pain. Thank God for morphine. I'm sure your hand will be ok in time.

Let this be a lesson for us all, like you said. When we don't feel well accidents are so much more likely.

I wish you a speedy recovery.

I understand. Two of my doctors I really like. Both have HORRIBLE staffs that make me rather have teeth pulled than to deal with them. They have both messed up prescriptions horribly...in fact, when I need to call for a refill, I pretty much leave myself a couple of weeks in order to correct the messes that are made.

I also share the "not being taken seriously enough". I've had what I call the "it ***** to be you" appointment where I'm told that basically, it's not worth trying much else. I can intellectually understand this, but it's undermined when I hear from other patients seeing this doctor who report having every stop pulled out. Why them and not me? It's difficult not to take this as some form of judgment on the worthiness of my recovery. The NP was surprisingly better last year than the doctor...at least she picked up on a condition that I've been relating for several years now and ordered the appropriate tests...however, after having them done, I never heard back from any of them and had to read the results in my records at my primary care doctor's office. So, by and large, I treat myself these days. My primary doctor helps. When I see the cardiologist or NP this year for my annual appointment, however, my husband is going with me and is going to help me try to get further. If we don't, he's insisting that I see someone else even though this doctor is considered the "best of the best". Not the "best" if one is not receiving any actual help, I suppose. It is disheartening as I'm almost afraid to try another doctor at this point...if the "best" is so seemingly unwilling to go out on a limb for one, what can one expect elsewhere?

Yes, yes, thank you. It's just like you said. I've heard of people being given special vitamin food, cerefolin I think it's called, clonidine, and all sorts of other things have been suggested to them, and I can't understand why not me? Why not at least something else to try.

I was only doing as he asked. I called back just like he said, and nothing?

I ask myself, do I not seem sick enough to them? What have I done. I'm NOT asking for anything for free. I've made two trips out there. 3 hour drive there 3 hour wait to see him, and a 3 hour drive home. TWICE. This after waiting almost a year to see them. Even if he did not want to do anything over the phone, I could understand that. How about asking me to make another appt.? I would of. I told the nurse I may not be fainting everyday, but my quality of life is terrible.

IDK. I probably have a big red X on my chart now, lol. Maybe it's like you said. They feel there isn't anything else they can do for me.

But yea, one of "the best". Too scared to go anywhere else that's for sure.

Thanks everyone for your responses, I truly took them all to heart. The faxing is a great idea. That is if I can make myself have enough strength to go find a fax machine.

I'm going to try to say this without bad mouthing him or his staff. I know he's a caring doctor, who's helped many, many patients. But apparently I'm not going to be one of them IDK.

I saw a doctor on Feb. 1st.

I've been waiting about 4 weeks for a return call from them. I've called about once a week every week, since my appt. with him. I've been pleasant and calm. Each time I get someone new who asks me the same questions over and over. Each time I explain my reason for calling, and ask if a nurse could please call me back. Every time they ask me for my phone number, which I've given them at least a dozen times. Once they told me my number had been disconnected! Ummmm no......it hasn't. Three times they had my meds messed up. Three times I corrected them.

Here's the back story:

On Feb 1st. after discussing my symptoms and talking about how I felt, my doctor decided to try me on provigil

He gave me a seven day sample . He asked me to call back and let him know how/if it worked for me. Within 3 days of taking it, I knew I couldn't. It made me EXtremely nauseaus. Yes, I only took it for 3 days, but it was at half dose, and I was soooo sick. Soooo, I called back, like I was told and asked them what my next step should be. No one ever called me back. Finally today I was so distraught I called again. Twice this week now. I finally got a call back from a nurse who basically said this......."Dr. said he would like you to stay on your current meds., he doesn't want to change anything, your still on ___,____,____,adderall, and ______." Ummm NO I'm not on adderall I've told you guys that at least three times, I cannot take it because it eventually causes muscle pains, hence the reason doctor tried me on provigil. "Oh, let me correct that on your chart."

Then I tell her, you know I'm still sick, nothing is better, isn't there anything else I can try? "Well, no not at this time, as you know this is a very difficult syndrome to treat and you're already on most of the meds we prescribe, just keep tabs on your B/P let us know if it changes." OF COURSE IT CHANGES I have POTS! I tried to explain to her how I thought maybe I needed a beta blocker and that I wasn't trying to play doctor, I just thought maybe it would help . I told her my quality of life *****. She didn't want to hear it, and innterupted me by saying again "this is a very difficult blah, blah , blah." I know it's difficult I've live with it for over 3 years! I kept my cool, I was friendly, but inside I was screaming.

I was told the doctor's nurse practitioner that I have the hyper form of POTS and possibly MCAD. However when I saw the doctor he said he thought I just had regular ole run of the mill POTS. Two different opinions. And one crazy, sick, angry, depressed patient, feeling like I'm not being taken seriously.

Help people. Am I somehow wrong here? I will NOT be offended, I just want to know what you all think.

Absolutely unacceptable. No one should ever have to stop meds. cold turkey. Everyone here has great suggestions. I'm starting to really feel jaded by doctors these days.

Sorry for what you're going thru.

So sorry. Please keep us updated.

Clonidine is an alpha beta blocker. It simultaneously lowers B/P while dilating blood vessels at the same time.

I've been asking for it, but alas, my doctors won't give it to me. No idea why. I'm told I have the hyper POTS by one doctor. Then told I don't by another.

****deep sigh****

Glad it works for you. Isn't it great when you get a good doctor AND a good medication.

Hi,

You may want to ask your doc why he gave you zyrtec. It isn't usually taken for POTS/dysautonomia - though some people here take it for other conditions.

I am glad you are no longer scared about the BP. It is normal to have some high BP readings even for people without POTS. One bad reading could even be a misreading or be aggravated by your being scared. Having that kind of BP as your baseline is more of a problem, but usually even then it takes a while before you would have a heart attack, stroke, etc. - people with high BP like smokers and overweight people don't have heart attacks for years. If so you would have to take beta blockers (or some other medicine) every day - rather than taking it in response to a high reading. My guess is that if you had high baseline BP, a small dose of beta blocker would not have brought your BP back down so low. So talk to your dr, but don't worry!

Yogini hi, thanks for replying. What you said about if I had high baseline B/P a small dose of bb would not have brought it down, makes perfect sense to me. I feel much less scared. Thanks.

prognosis of full recovery is usually related to etiology, how exactly you developed POTS. some people get POTS from underlying neuropathy which progresses or cannot be corrected due to trauma or genetic factors...so their prognosis is not hopeful. but many people acquire POTS after infection or during a growth period, and they have a high likelihood of recovering spontaneously (i.e. without medical intervention).

if the etiology is neurological damage limited to the Autonomic Nervous System, where the source of the damage can be halted, then those are peripheral nerves, which (unlike central nervous damage) can heal and do heal over about a 4 year period.

in my case, I recovered a lot in that 4-year period, but I was still only semi-functional after that, until I got the proper medical intervention. I got POTS suddenly in 2002. I recovered a lot between 2003-2006. In 2006 I was diagnosed and started medication (mostly Midodrine). In 2008, I stopped the midodrine and started other forms of treatment. Now, 2010, I consider myself fully recovered. I'm on gaurd, however, because I know a relapse is still possible.

Good luck with your recovery! I'm sure it'll get better.

Would you be so kind as to elaborate on "other forms of treatment"?

Eric, YES, I forgot. You are exactly right. Histamine IS a potent vasodilator. Therefore blocking histamine would help. Thanks for the reminder.

Of course no one has "proven" I have excess histamine, like with MCAD, but I'm guessing because zyrtec and the like help a lot of people it doesn't really matter.

FIRE! You know that's funny because I could not find anything, anywhere on the net that said that it was vasoconstricting either. Unless it was zyrtec-D. Which i am not taking.

But I am positive he said that. I looked and looked, the day after my appt with him. I even have him on tape saying that. Crazy I know, but I asked him if I could record our session because my memory was so bad. He didn't have a problem with it.

Soooo, just more confusion.

I get numbers like that too. The highest I've recorded was 174/152 (I KNOW it has gone higher at times, even measured higher by nurses during pain.) The lowest was 50 over "can't hear anything" (at Vandy.) It is going to happen, especially if you're the HYPER-POTS type, you just constrict and keep constricting. Did you have symptoms when it was that high? What position were you in? During my autonomic testing I got numbers like that too. Try to relax. If this is really odd for you, call your doctor. New symptoms need to be addressed. Your pulse pressure was good, so I don't think you showed hypovolemia. I didn't look at your meds, but the BB will cause you to have the really low BP that you got lying down--it was at peak activation when you took your BP the second time.

It is normal for our BPs to fluctuate, even higher numbers are normal under certain circumstances (valsalva, straining, weight-lifting, etc.) It is only when it stays high all the time, stays low all the time or doesn't change at all that you have serious problems. Don't be scared, call your doc and ask the questions, perhaps your meds are too high. With questionable MCAD you could get some really high numbers when standing. There is one article in the "mother of all MCAD posts" that mentions Postural Hypertension and POTS is a hallmark of MCAD.

Calm and relaxed, calm and relaxed...

((((((((((((((hug)))))))))))))

Jennifer

Thanks Fire, this site is so invaluable to me. It's like having a doctor on call 24/7. Really, better than that. A doctor who cares and who KNOWS exactly what we're going through.

Thanks for the in depth explanation. I don't care how many times I've read about this stuff it just DOES NOT sink in. It's like everyday I need to ask the same **** questions.

To answer your questions, yes I had symptoms at the time. I was standing up feeling miserable ( mild low back and shoulder pain) I had only been out of bed about 20 minutes. Felt the usual heavy legs, fatigue, flu like symptoms.

Why if our blood vessels are constricting too much, are we taking zyrtec etc. which constricts further? Grrrrrrrrr I'm so confused.

Dr. Grubb said almost everyone feels better on zyrtec. I asked why. He said because it is a vasoconstrictor.

See what I'm saying? it makes no sense to my POTSY-foggy-oxygen deprived brain!

What am I missing?

Thanks again Jen, and I will try to stay calm. (((((hugs right back at ya)))).

So.......I took a HALF of 25 mg. metoprolol. Laid down for about an hour. Took it again (still lying down) it was 87/48. *** is going on with these numbers?

I'm starting to get scared.

Stacy, will you please let me know how the clonidine works for you.This is a drug I've been wanting to try, but for some reason the doctors keep stalling on giving it to me.

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

Thanks Stacy. As I lie here in bed, yet another day, I'm contemplating what meds. to take. I've put myself back on a tiny does of metoprolol and midodrine.

b/p and h/r have been very high this morning and this afternoon. I just feel like crap. My standing nori was 987. Not as high as yours, but i still think I have the hyper POTS. I'm NOT understanding why they won't give me clonidine.

Oh well, please keep me informed on how it's working for you. Thanks.

Stacy, will you please let me know how the clonidine works for you.This is a drug I've been wanting to try, but for some reason the doctors keep stalling on giving it to me.

Strange I feel better on high doses of ibuprophine( I know spelled wrong) too. But I'm so afraid of getting a stomach ulcer.

Oh screw it. I should just take it and deal with the possibility of an ulcer later.

I'm so sorry guys. I have nothing to add, except this *****! I have no real answers either. I'm sick of it all.

I wish I could help, I really do. :(

Is Dr. Grubb better to see than the folks at Vanderbilt? How do they figure what type of POTS one has...no one has mentioned anythin like this to me. Why does it matter....are the treatments taylored to each type? If I got it after a virus what type would that indicate??

Thanks so much!!! ANy info is so helpful. Erika

Sorry so late on answering this Erika. I hope you read it. I had blood work that showed high standing norephinephrine. It was 900--something. Can't remember the exact number right now. Anyway, that is not normal. It means too much adrenaline--the fight or flight hormone.

Some doctors subtype POTS. There are different treatments for the different types of POTS.

I don't know if Dr. Grubb is better than Vandy. He is suppose to be the best, or at least one of the best.

Have you had blood work done? I'm sorry I haven't read too much about what you've tried. That's about all I can think of to tell you right now. Brain fog is taking over. Hope this helps a little.

Love it!

I had an experience where because of my really bad memory I forgot to pay the minimum payment on a credit card. I had never been late before and the late fee was $39.00!

I was really upset about this and felt like crying. Usually I would suck it up, call the company and pay it. But this time I just let myself feel what I felt. I called them and when the girl answered, I was crying pretty hard. I "may" have exaggerated a tiny bit. I told her all about how sick I was, and how stupid I felt, I just went on and on, sobbing in between sentences. Well the poor girl was so nice to me. She kept saying "It's OK, just calm down. Just take a breath I'll help you." Don't worry..she said. I'm going to waive the late fee. You've never been late before. Then she asked if there was any other way she could help me!

It felt so good to just be myself AND to get the $39.00 taken off!

So the moral of the story is.......if all else fails cry.

Hola~

Well, count me in as another person that can be your friend. I am 47, with a grown son, and I am also going through the **** that is perimenopause. I live in AZ, (but am originally from the Midwest - Iowa - and visit there quite frequently) and am currently disabled and not working. PM me if you'd like, and we can write and exchange phone numbers. Hope you're doing okay today.

Cheers,

Jana

Jana hi, thanks so much for the offer of support. I will Pm you. My body hurts today, so I'm pretty miserable. I'm going to take something for pain and see if it gets any better.

hey- I am far (in pa) but I think we are facebook friends - I am almost always home and you can call me! PM me if you want the number. I should warn you... I don't always make sense when I talk and I nap a lot...but I think I am a good listener. kayjay

kayjay, yes we are facebook friends. LOL about not making sense when talking. No need to explain that one! I totally get it.

My whole body hurts today. I'm going to try to take something and see if I can function. Maybe I'll give you a call later.

Hey there my dear...your post caught MY eye too ~!

I remember the many many years and problems of PERI-menapause..yuck!! I had over 10 years of PERI-menapause.

I didn't know I had Dysautonomia then either..or other kinds of things wrong.

Get this.. I just had some steriod injections in my back..and..WOW the side effects INCLUDING BLEEDING again at 60!!

Now I have to have tests..biopsies for Uterine CANCER.. oh no they didnt!!!

I dont have children your kids are at..but more like 7 grandchildren. I cannot be that ACTIVE grandma like others.

My darlings seem to just accept me..but still..they ask.

But sweetie.. I will be your friend..your internet "mommy"..whatever YOU need k?

You can PM me.. and we'll see what you need and know this.. I can and WILL support you.

Hi, I'm sorry I just got to reading this! thank you so much for the reply and offer of support. You sound like a wonderful grandma! Your grand kids are lucky.

This Peri-meno stuff is brutal. How did you make it through?

I am not too far from, in the same state at least and I'd love to be a friend! I'm 43.

I have four kids though and still have a 3 year old and my 5 year old is still at home.

They do not let me talk on the phone at all! They get jealous.

If you would ever want to send a pm for now or email that way I can get back to you as time allows. And then in the future I might have more time to talk on the phone at least that's what I keep telling myself.

I also had the feeling my hormones were messed up especially because my periods were changing right at the time of all of my other symptoms. First my periods went to every two weeks which of course made my anemia worse and made me weaker and more emotional.

Then they went back to every four then they went to every three.

I went to get checked out and thank goodness everything was normal. They said my uterus seemed a bit large but after four kids does it ever really go back to normal?

They did an ultrasound though and every thing looked good they said I did not want a hysterectomy and that they would look at different options for me. I put it off and I'm supposed to be checking in with them to see how much of a problem my bleeding is-sorry guys!

I haven't really done that figure it's something I most likely have to live with. I know my mom's periods were awful and she lived through it when she was going through perimenopause.

My hormones came back normal too and I actually think all other lab work including Hgb was normal on that lab test. But they said that they could be fluctuating on a daily basis there was no way to tell that by the tests they had done.

But hey pm me and I'm willing to listen and if the future I might even be able to talk on the phone.

lieze

Hey Lieze! Sounds great. I will Pm you. Wow 4 kids! I just have one 5 year old and it's sooooo hard sometimes.

It's weird I'm always talking to someone, whether on here, or on facebook, but it's like I'm tired of this kind of disconnect. I'm not sure if that's the right word, but you know what I mean. I have friends that I see and do things with, when I can. But of course they're all healthy. So I suck it up and play my healthy version of myself LOL. It would be nice to say........"Hey Lieze I feel like crap right now." and you'd understand.

Hey! Your hormones comment caught my eye. I was saying for about a year that I thought mine were messed up and when they tested my FSH they said oh it's fine you're not in menopause. Recently I had my hormones tested by my naturpathic doctor through saliva testing and they were all incredibly low! I think getting the right help is crucial in all of this!! Check out the saliva testing. You can even get tests over the internet that you mail in I have heard. Sorry you are having such a hard time...I know how it feels to be so frustrated and having no one who understands it! Keep your head up and in the game...you need to be the star player on your medical team!

KC

Thanks, and you're right. I need to go see a naturapath (spelled wrong). That is my next step. But it's the $ I'm worried about. I don't think insurance covers them.