Notgivinup

but I was wondering if anyone lived near Youngstown, Ohio. I've never met anyone with POTS in person. It would be so helpful & healing, I think, to sit down face to face with someone & just talk. I haven't been writing on here much, but I still read almost everyday, and I think about you all every single day. Just been feeling a bit down lately. Some good days though. (not many). My hormones are adding fuel to the fire in the POT-S. (haha, couldn't resist). I'm 46 and pretty sure I'm in perimenopause. Of course the doctors won't treat me for it. They all say unless I was skipping periods or my blood work showed too low this or, too high that. But it keeps coming back normal. However I feel anything but "normal" before and during my periods. It takes me about 10 days or so just to recover. Then If I'm lucky, and I don't catch a virus or something I have a couple of fairly ok weeks. Ahhhhhh this is all just so exausting. Oh......... I forgot, even talking on the phone with someone would be really nice. I have friends, but of course they're all healthy and I try not to discuss all my crap with them. So........... does anyone want to be my phone pal? LOL.

UPDATE: Saw Dr. Grubbs. I didn't get as much out of the visit as I thought or hoped I would. He spent about an hour with me. During that hour he told me his wife's brain tumor is getting worse. I felt like he was very distracted by that, which I can't blame him. I had sooo many questions. I came back with not too many answers. Don't get me wrong, he was very nice and sympathetic, I still think he's a great doctor and person, but he seemed to be very tired. I was his last patient. I saw him at 6:30 PM. He does not think I have MCAD. I still do. I asked why then does zyrtec help me so much. He said it is a vasoconstrictor. Hmmm. BUT, I've tried midodrine and florinef, which both help constrict blood vessels, and they did not help me. He also didn't or couldn't clarify if I had the hyper form of POTS. His exact words were, "Your blood work shows that you have it, but your clinical presentation does not support it."???? Soooo what does that mean? I feel as though I have too much norephinephrine. (sp?). i wanted to try clonidine. Instead he gave me a coupon for 7 free provigil tabs. I took one today and felt nauseous and speedy. But my POTS symptoms were not too bad. I just don't know what to think anymore. It's all so confusing. I wish he would of at least gave me a prescription for a test to rule out MCAD. He did give me a hug at the end of our session and told me not to worry.

I am always soooo tired. I've slept for over 12 hrs. and wanted to sleep more. I now know with trial and error, that no more than 7-8 hrs is good for me. It's so weird. Feel like sleeping forever, but feel worse when you do.

Try to relax and enjoy your pregnancy, or the last month at least! Nobody knows for sure how you will feel afterwards. You may feel better! Once the baby comes, the love and joy you feel for her/him, will override your symptoms for sure, at least for a little while. I've heard both sides, and some women do feel better! Try to stay positive, your baby will need you to be positive. And you'll be lying down at lot at first anyway. That will help everything.

Wow, so sorry to hear about all your pain. It does seem like you're on the right track now. Good luck, and keep us all updated please.

Wow, Frank, never have I heard such encouraging words. Thank You so much. Everyone on this board has been so nice and encouraging also, but your words hit me just right. It was everything I needed to hear. We did find out about the hotel discount, we will be staying at the Hilton. He's almost 4 hours away from us. Not too bad, considering where other people have to drive from. I have been told about his perception of time. I'm prepared to hurry up and wait. LOL. Frank, may I ask what kind of POTS you have? I've been treating empirically with antihistamines. We "think" I have MCAD and the hyper- form of POTS.

I do have a 5 year old son. I am 46 years old. It is very hard. Just having a 5 year old at my age would of been hard enough,(in a good way) but add POTS to the mix, and you can imagine. I stay positive because I HAVE to, for him. I stay positive by reading this board. I stay positive because it's the only way. I'm also on an antidepressant! I have to be. It helps. The ups and downs of this syndrome/whatever, can take the fight out of the strongest person. I'm just thankful I have some ups. You should be too! A lot of people on here, or with other illnesses never feel good. I'm not trying to minimize your pain, and I hope my rantings don't come off that way. I still have days where I get down, and have a pity party for myself. I just try to stay positive because really, what other option is there? I can choose to be happy in the here and now or wait for things to get better. I choose to be happy now. It's been 3 years, I've already wasted enough time. I'm not waiting any longer.

I've waited a long time. I'm so scared and nervous. I know this is my last hope of someone being able to find the underlying cause of my POTS. I am been being treated as though I have MCAD, but it's never been offically dx-ed. Though I've felt better on the H1, H2, & singulair protocol I'm still far from normal. And I don't even really know for sure if the antihistamines are responsible for me feeling better. Could be just time. It's now been over 3 years, since I got sick. I know I shouldn't put all my eggs in this one basket. I'm terrified I'll leave his office with no more answers than I have now. Yet I'm hopeful? Sort of. I guess I don't really know how I feel. Fearfully hopeful, that's it. Anyway, my neck and shoulders are killing me tonight. I'll update next week after I see him. For those who pray. Please pray for me. Or if you don't pray, wish me luck!

I am lying down right now, and I accidentally left an empty post! All my physical symptoms go away while lying down, but sometimes (like now) the brain fog doesn't go away. Most times it gets better, but still not like I was before POTS. When I first wake up in the morning I feel great. I mean before I get out of bed. Once I get up, all my symptoms start. Then as the hours go on I usually feel better. That is if it's going to be a good day.

**** adderall. I love it and hate it. It's been about 3 weeks I think, on it again. My entire body is stiff, and in tight knots. Especially my neck and shoulders. So much pain! I have to stop it. I got a lot of really good days out of it, energy, no lightheadedness, brain fog a bit better. (any little bit helps). Felt pretty normal for a while. THEN the muscle stuff started, and slowly but surely it got worse and worse. I'm so disappointed. Now I'll be back to extreme fatigue, low mood, no motivation, probably dizzy etc. On a good note (I hope) I see Dr. Grubbs in two weeks! My first visit with him. I pray he can help me..

THANKS, I really needed that tonight. I've been feeling really down, broken. Tired of being this way.

I am back on the adderall. 10mg. morning. I was just sooo tired all the time, I didn't want to get out of bed. Adderall for me is a double edged sword, because on one hand it gives me more energy (although false), but it also tightens up my neck and shoulder muscles. As far as lightheadedness, I think it helps by constricting blood vessels. So in some ways I feel better, but once the muscle tightness kicks in I feel just as bad, but in a different way.**sigh**. Can't win with this thing.

Yes, I often have neck stiffness and shoulder pain. I feel worse when they hurt. More POTsy. When I don't have that pain, or I finally take some pain medicine, it's all much better.

Dustin, Dustin, how very informative that test looks, could you pleeeeze tell us who your doc. is. Or what kind of doctor he is. Hope you're feeling ok.

I'm on cymbalta 90mg.

Interesting. I'll have to take note of that. Lately, well, for a long time now I haven't had the desire for sex at all. My poor husband.

Thanks for the info. And I found this... Cardiovascular Health L-Citrulline?s primary benefit is in the opening and relaxing of blood vessels. A healthy increase in blood flow increases the transportation of oxygen and nutrients through the body. An important intermediate in the urea cycle, Citrulline functions alongside Arginine and Ornithine in ridding the body of ammonia. Since Citrulline is a precursor to Arginine, it is a readily available source material for Arginine production, which in turn produces of Nitric Oxide (NO) in blood vessels. NO plays has a fundamental role in vascular function and blood flow. Citrulline supports detoxification pathways, NO production, and a healthy cardiovascular system. The body converts Arginine to Citrulline, producing nitric oxide in the process. Citrulline is then chemically recycled back into Arginine in the endothelial cells of the blood vessels. Citrulline and Arginine?s benefits are similar, but for healthy blood flow and nitric oxide production, citrulline is preferred. Arginine is diverted to other less critical uses while citrulline?s main function is in the blood vessels. OK, so as usual I'm confused, I have the hyper form of POTS. Do my blood vessels need to open (dilate) or close. I always forget if my blood vessels are too constricted or too open. God, why can't I get this straight? Grrrrrr

I wondered about that too. I put a call in to Dr. Grubbs office. No one has returned my call yet.

Mack's Mom, How much turmeric do you take? I weigh about 110lbs. I've been taking I think 500-1000mg. (when I remember). Is that enough?

I'm feeling kinda crappy again. Still not as bad as before the antihistamines, but not as good as when I first started them. I wonder why? Any ideas. My standing h/r today was 112, not to bad.Or was it? IDK I'm so confused these days. BRAIN FOG is bad.

Bella, I am soooo happy you found your money. Christmas makes me sad now. Sad for all the things I can't do anymore, for all the things I wanted to do for my son, my mother, (who is widowed), my husband. I wish I had the energy to bake cookies. I didn't. I wish I had been able to send out cards. I didn't. I wish I had been able to get my sister and her husbands gifts to them on time. I didn't. Heck I didn't even buy them yet. It was all I could do to try to make my 5 year olds Christmas a good one. I didn't have any friends over. Or family. Not that there is much family left. Yes, Christmas made me sad. The only joy I got was watching my child open his gifts. But it went sooo fast. I worked so hard it seemed, and in 15-20 minutes it was all over. IDK, the stress in our lives right now is ENORMOUS, and not just because of my illness. So many other things are wrong too. BUT if I weren't sick, I could do a lot more to make things OK. I also hate the happy facebook people. I did not say one word about our holiday on my page. I could of faked it but why? Too much energy. Blah, I'm depressed tonight.

I don't really have anything else to say as everyone has already said it. BUT I did want to say, I've heard many times Dr. Goodkin is excellent.

Been there. Done that. This dis-ease tortures you. It just plain *****. When it's been so long that you can't even remember how it feels to feel normal, and then all of a sudden you feel it again OMG, it's like heaven.You jump for joy. You want to do everything you've missed for so long. (and I tried) Then slowly, or suddenly symptoms begin to creep back in. And you just can't believe how bad you feel. just plain torture. I've been feeling better since on a antihistamine routine, but the stress of the holidays, have not been easy on me. Plus the one thing I can't seem to beat is the fatigue. also right now, I'm having lots of anxiety, which is causing me some dizziness again. *Sigh*

Hey, what do you guys think of this.Turmeric can not work alone. Poor bioavailability. Maybe we need to add piperine to it?