Notgivinup

Dysautonomia in Dogs Hmmm. Interesting. toxin found in nature?

Thanks, looks very useful.

Don't know if it's affecting my POTS but it sure is adding injury to insult! Like it's not bad enough just having POTS, I need this. Grrrrrr. When will it ever end? I have to have a laproscopic (sp). surgery in two weeks to check for endometriosis as well. At the same time he will take a biopsy, and do a D&C. I have sooo much pain with my periods. And there is a 25% chance of this being, or turning cancerous. Ugggg....kill me now. Man it ***** being a 46 year old woman.

Cardiac output and blood pressure If only my brain fog would let me comprehend it. I'll have to read it another day. Maybe someone else will find it useful.

Kay, I can sense your frustration here. I'm sorry you're not feeling any better yet. I was never officially dx'd with MCAD. I was also never officially dx'd with H-POTS. One doctor said I had it (H-POTS), and the other doctor from the same office said I did not. All I can tell you is that one day I tried zyrtec and felt soooo much better. That lasted a couple weeks I think. Since starting the zyrtec I still do feel better than before it, but not as good as those first days. When I told the one doctor how I was feeling she recommended adding an H-2 blocker and singulair. This without ever confirming or denying MCAD. Well this combo seemed to work well for a while too, then things started to change again. My b/p's were all crazy. Up, down, you know the drill. I still don't know what I have, but I know like you my standing norephinephrine was high. I've never flushed (that I know of) and I have no allergies that I know of. But since zyrtec is so benign, why not just try it like I did. Worst thing could happen is nothing. And who knows maybe you'd get some good days or weeks out of it. You have nothing to lose. I do know one thing........... excess histamine raises adrenaline! Which we apparently don't need. I guess that's why in a lot of Potsy's antihistamines help?? IDK. It seems the more I learn the more confused I get. Do you get itchy a lot? Hives? For the life of me I can't remember some of the other tell tale symptoms right now, I'm sure others will. I'm so sorry you're not getting the answers you need. Keep looking. I'm Notgivinup, so don't you!

to tell me what dose you're on? I've started with a half 0.1 pill twice a day. Then today one whole pill in the AM. Not sure if it's helping the way I feel, but it has brought my heart rate down. It was in the 120's-137. I also have a sinus infection, and have been on bactrim. Feeling very tired and just blah. Tomorrow will be my last day of antibiotics. Shouldn't I be feeling better by now. I think my sinus infection is gone, but I still feel like crap. Thanks

Yes, I have it now. Normally I do not have it, but I have a sinus infection right now. It seems anytime you are sick or more stressed than usual you can get it. It's scary, but it is easing up now that I'm on antibiotics and feeling better.

Bumping this in case he's around!

I felt pretty close to normal for about 10 days in a row back in Oct. I "thought" I had found the right combo of meds. for me. Alas it didn't last. I'll never know why it worked for those days. It's truly a mystery condition. The body seems to be constantly changing. (At least mine). It is possible, just keep reading, researching, have her listen to her body. Use your instinct as to what is right or wrong for her. And never let doctors bully her into thinking she should just get on with life. This can be a miserable illness. Mentally torturing, and physically.

I cried. I laughed. Thanks for sharing.

Kay, for some reason, I can't remember right now. You were not suppose to use a pillow. I told you I tried it,(used 3 bricks) it probably did help, but like I said, I kept sliding down and felt like my sleep was disrupted. I think you should try it, but make sure it's the right way. Maybe ask your doc. again.

Lieze, please don't let my post keep you from getting help. This is just me. LOTS of people get better. Lots of people find good doctors and find the right combo of meds for them. Please, please, I'm so sorry to have discouraged you. Just ignore me. I'm still Notgivinup. I've just not found my angel doctor.......yet. I know someone on here will point me in the right direction.

I'm in Youngstown, Ohio. I need someone that has at least a general idea of what POTS is. I need someone to manage my meds. You know. Give me some suggestions, something new to try. I've had the worst luck with the "best" dysautonomia docs. I guess they just don't see my day to day life as being all that bad. I don't faint. My B/P's aren't WAY over the top. My low this morning lying in bed was 84/68. Low, but they would never see that in the office. Heart rate is never below 100, except while lying down. Highest I've recorded standing was 145. I know it's been higher. Not high enough I guess. If they can't SEE how I'm feeling, they just don't help me. It's like I walk into the office fine, I look good. I speak ok. (They don't realize how hard I work at being articulate). I wish I would just all out faint right in front of them. This is so frustrating. If I wasn't really sick, would I have spent thousands of dollars on tests for the last three years. Would I be going to doctors constantly. Would I be on DINET complaining every week. NO........I would be out living my life!!!!! Why can't they see it? Should I act sicker? This is my line of thinking now. If I look and act fine, then maybe I should paint my face a pasty white color, make myself vomit, grab my chest in agony, speak incoherently, and fall over onto their feet. Ugggg. I'm not crazy, and I would never do that, but hey, maybe then I'd get some help.

THANKS guys.!!! I knew you'd all know.

I've been told to have an ablation too. My periods mess with my POTS terribly. I also have endometriosis. I need to get something done the pain is horrible.

Nikki, I do too. It's very frustrating and confusing.

last night. Didn't take my B/P because i was too scared. It passed after about an hour and half a bb. Tonight I felt funny, worse than usual. Took my B/P Sitting and lying down. It would NOT register standing up! just got the EE, for Error. I tried about 8 different times. It always picked up sitting and lying, but would not register standing. Does anyone know what this could mean?

Hi, just a quick reply here. I read the exact same thing. I have curcumin, but WITHOUT the pepper stuff. I posted on here a while back wondering if anyone tried it with the piperine? (sp?). Anyway yes you are right what you read. I "thought" I might of been getting some benefit from the GNC 500mg. But I could never be sure due to the ever fluctuating symptoms of POTS.

devising a cure! Love it. He could probably do it too.

haven't heard from you in a while. Hope you're in a great remission and enjoying your life!!!!

Awww, of course you hurt for your child! I hurt for mine because I have POTS! And BTW it's been 3 years for me too. I hurt for him because of all the things I can't do with him. I'm 46 and won't out grow this. Your daughter has an excellent chance of out growing this. In fact I know she will! I've read so much about kids recovering. And with all the new research that's going on now there is no reason not to think positive. Don't apologize for venting on here, that's what we're all here for. ****hugs****

Certain times of the month I crave olive and pickle juice too. I drink it straight from the jar. But unless I'm having steak I don't use it much. Oh I forgot I also love pumpkin seeds. With the salted shells. Connection?

TheLivingDead, Love the name! Welcome. Your name kinda sums it up for me on some days. I'm sorry I don't have any real answers for you, but there are so many very intelligent people on here. You will get to know more about your illness on here than anywhere else. Just read, read, read.

OMG, lack of sleep makes me a complete idiot zombie. Even an hour less. It will pass.