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.

for the past couple weeks i have had severe brain fog and dizziness with the POTS attacks. i am a wreck and feel like im going to be like this forever. I know that being 8 months pregnant is making it worse, but i heard most of you saying that after birth it gets even worse. im just feeling horrible and feel even worse because im not looking forward to birth because of this. i cant enjoy the pregnancy and i just want to stop feeling like this. i feel like im going crazy and nothing is helping..

any ideas

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.

not,

Dr. Grubb is great. I first started feeling effect of POTS last summer, I was taken to the hospital after blacking out at work in September. I spent 22 days there getting tested, misdiagnosed, doubted and quetioned about my sickness. Luckily a doctor there did some internet research and contacted Dr. Grubb who had them perform a tilt table test. After hitting 180 beats per minute on the table, it was finally confirmed.

I have been almost completely bedridden with this, not being able to stand or sit for more than 5 minutes. I was able to get an appointment with Dr. Grubb in late November. I had to rent a compact RV with a bed for me to lay down in just to get to him from Long Island NY.

He is very knowledgable about POTS, He spent about 3 hours talking with my wife and I. He explained the history of the problem and asked about all my symptoms. When I told him I had questions for him, he said I'll answer them. I said I have 3 pages, he said I'll answer them. And he did. Every one.

How far do you have to go to get there? How are you traveling? Are you staying at the Hilton, he gets a big discount there. Be prepared, write down everything you want to tell him and everything you want to ask him. He will probably want a follow up in 6 months, so don't forget anything.

Mainly, don't worry about seeing him, relax and be yourself. The worst is over, you are going to start getting better now.

Frank

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.

When my POTS was severe, lying down helped with some symptoms, but not all. I also have experienced waking up and feeling disoriented. I believe due to low bp as you state.

**** 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.

Hi all I was put on Lexapro (ssri) by the my local doctor who thought I might have POTS before I went to Mayo. Mayo did not want to change my meds at that time but I would love to know can hyper pots people take SNRI? I want to try something else but don't want to cause trouble for myself.

I can suggest meds to my Doctor but want to check with all of you first. What do you think?

As always thanks!

I'm on cymbalta 90mg.

To quote my neurologist (heavy Indian accent required:) "Take your Klonopin if you anticipate having intercourse."

To quote my OB/GYN (no accent:) "Sex stirs up a whole lot'a catecholamines...if you do it right."

I only have POTS issues if I um, achieve, um...

Then it creates a big spike in my headache and tremors. If you have MCAD or mast cell issues, it will also cause a flush that is directly proportional to the intensity of the... um...

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 think your body can adapt to some medicines so they no longer have the same effects as before. I don't know if changing antihistamines would help if your dr says so.

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 am having an horrible time! My main POTS dr (autonomic neuro) called and yelled at me on the phone Friday! I have basically been in tears since. I had left a message with his assistant, letting him know that my cardio wants to switch up the meds, and to call me if he has a problem with any of it. He and this cardio had agreed to work together in my treatment, as both have been treating POTS for 20-some years (sounds ideal, right?). So he calls me and says angrily that he "doesn't have time to argue with another doctor". They've never even spoken!! Nor did I ask anyone to "argue" - I was trying to do my due diligence and make sure everyone was on board with the change. I didn't want to upset the apple cart... well the apples are rolling around in the street now! He said he also got denial from my insurance to have the insulin response test done that he wants me to have. Shouldn't a Dr know that (1) that's sort of par for the course w/ insurance, and (2) that it's NOT the patient's fault???? Plus, I went out of my way to do as much leg-work for him as possible in trying to get the test approved so as no to waste his time. To the point where the insurance company actually said to me that I had to let the Dr's office do the rest. GRRRRRR!!!! So did all this require yelling?? Sort of ironic when he's the one who's been lecturing me on not getting stressed out since it worsens symptoms. Now he's causing the stress.

I have been vacillating between anxious energy and bawling all weekend. I'm trying to get angry but it's hard. I can't imagine why he needed to take things out on me. I actually broke down and cried while on the phone with him, which I've never done w/ a Dr before. But then I've never been treated this way! And the worst part is that he's the one who I've felt best about through this whole thing. He's the major POTS Dr in the area and up until this moment I felt like we'd been getting along well and that he's really been helping. It's clear, though, that even though he said he is willing to work with my POTS EP, he really wants to run the show himself. But he's not a cardio, just as the cardio's not a neuro! Forget what's best for the patient. In fact, as proof of the point, he had me go through a horrible withdrawal from Cymbalta just to prove whether or not the cymbalta was exacerbating my palps... and after a month of withdrawal symptoms, the tachycardia and palps were the same as ever. The cardio told me later that he could have said straight off that the cymbalta wasn't effecting the palps. I never even told the neuro this because I didn't want to seem to be second-guessing his expertise. Now I have seen first hand that it's good I didn't tell him this... God forbid his wisdom be questioned!

so now I'm wondering what the heck to do. Part of me thinks I should suck it up and keep going to him, but the rest of me wants to try another POTS guy in a neighboring state (Dr Goodkin - I think he's in Media, PA? If any of you like him and think I should give him a try, please pm me!). I feel like the rug's been pulled out from under me.

*sigh*

dizzyde

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?