scarfgirl

@KC: what herbal remedies are you referring to? I'm going to continue using caffeine, right now I'm drinking a cup every other day (really don't want to get addicted since that'll cancel out any benefits). How can I respond to this email in a way that will get the doctor to understand that this is important to me? It's got to be significant that caffeine gives me such a huge boost, and I don't won't him to write me off just b/c I'm not improving like he thought I would. It seems like doctors are great at listening and understanding....for about 3 visits. If you're still a mystery after that, it's because you're difficult. Also, if anyone has suggestions as to safer/more effective alternatives to caffeine or a way I can ingest it semi-regularly without forming a habit, please let me know!

Alright, so after having my florinef dose increased again , I sent off an e-mail with my latest BP results (sitting and standing). I also explained in the e-mail what, to me at least, were three important things, that 1. Due to a goof on my part, I had accidentally taken three tablets of florinef a day instead of the two I'm supposed to be on for a few days. I stopped as soon as I realized what I was doing, but had taken three tablets for almost a week before I figured it out. 2. Despite slightly improved numbers I'm still as unable to function and feel just as bad as when I first showed up in his office and that this really bothered me. 3. While I was told to avoid caffeine completely, and had followed that advice for the first couple of months, I've since added it back in (a cup of coffee every other day) and have noticed a HUGE improvement in my ability to think and move around in the hours immediately following ingestion. I wanted to know if I could either try ingesting caffeine occasionally, or if there was some other medicine that could provide similar results. Also wanted to know why caffeine helped so much. This is the e-mail I got back: Stacy, Dr. Watkins read your email and said that you don't need 3 Florinef per day and that your blood pressures are fine. He said you must avoid all caffeine. As soon as I read that e-mail I saw red. The telling me I don't need 3 florinef shows he couldn't have more than just glanced at what I had to say and the complete dismissal of something I thought important just pisses me off to no end. I know my **** body, I know how to tell when something is helping me or not helping me. The stuff he has me on isn't helping, the caffeine is, and I want to know WHY. How should I handle this? I obviously need better help than I'm getting (when I saw this guy five years ago he put me on the same treatment regime I'm on now, and just like then I didn't get better. The only difference now is that I actually know a little about POTS, enough to know that there's more out there to try than just beta blocker/florinef). I have no idea how to find better help, but I have no idea how to make this guy listen either. I want to send back a less than friendly email demanding answers, but know from past experiences that doctors just get obstinate if you don't accept their word as gospel. Also, know I need to cool down a bit before I sent a reply of any sort. Advice, please? I can't keep going on the way I am.

I used to have these non-panic attacks when all my symptoms first started up. Other than that they usually occurred at night I don't recall any other pattern to them.

I'm really not sure why my GP brought it up. He has a patient that is going through the diagnoses process now and I guess my chart reminded him of that guy? He basically said 'you could have that too' but then kind of dodged any questions I asked him about it like if I should try some of the treatment or get diagnosed myself. The same doctor also made me cry by stating that I was lonely and that it would only get worse until I made myself get out more. Just right out of the blue. I went from feeling pretty good about myself to feeling like total crap in 15 very confusing seconds.

I'm sorry things are so rough for you. Hang in there sweetie.

I might hold off on the oats for a while then, my bp is about is low as it can get right now. I'll write it down to keep in mind for later. Anyone taking CoQ10? I mentioned it on the mito thread, but was wondering if any non-mito people took it.

My GP mentioned mitochondrial disease, then I saw it mentioned on this board. Is it something I should bother looking into? Or should I try some CoQ10 and see if it helps any? The diagnoses sounds long, and complicated, and I really don't have the energy for something if I'm not certain I'll get some energy back for the effort.

I've done magnesium foot soaks before, and I have a bit of magnesium in my calcium tablets. Maybe something like that would work for you Ericka? @pat57 - I've tried St. John's Wort in the past and it did help cheer me up (this was pre-POTS). Don't know if it would help much with depression as severe as mine. Is depression what you were recommending it for, or do you take it for something else? @lauralulu - /a. sativa is oats, right? Are you eating a lot of oatmeal, or are is this some type of concentrated form or oil or something? I'd like to know more if you have a link or something I could look at. The only thing I know about oats is that it's supposed to lower cholesterol.

I should add the one I'm most interested in trying is the Nervous Fatigue stuff. I always feel like I'm having adrenalin burn out (that wired but tired feeling) and wonder if there's something out there that would help my system chill the **** out. I'm taking Klonopin and the occasional Ativan, as well as a beta blocker, but it only helps a little.

HoudiniCat, how did the CoQ10 work for you? Sunburnt_land - thanks for that warning dani, good point about the garlic! A lot of things that are supposed to 'improve blood circulation' are bad for POTS people, mainly because they dilate blood vessels or lower BP. Another reason to be nervous when people say they know just what I need. Anybody else wanna weigh in?

Did you try the tiny little red bottle that says 5-hour energy and has a silhouette of a guy running up a mountain? I'm trying to determine the effects of that specific drink on people.

Lol, I revived it! I was doing a search for energy drinks and your post was the only one I saw, so I thought I'd start it up again. Sometimes good questions get lost in the mix of an active board before anyone gets a chance to answer them.

So a high WBC is not normal for POTS? I'll be sure to mention that to the doctors when they repeatedly ignore my count as an indicator that something might be wrong and insist it's just because of the POTS. I always felt they were ignoring something because they had no obvious reason to explain it, but since more than one doctor did it I began to believe them. ((I went to the ER once because I had gotten so weak that I couldn't get out of bed to feed myself, tests revealed a high WBC count and blood in my urine and the attending Dr told me nothing was wrong.))

So a friend of mine tracked down some homeopaths and got a couple of different treatment regimes for me to try. One suggestion he got from a naturopathic doctor and the other came from a lady that owns a health store. Both people insisted they were very familiar with POTS (that made me suspicious). I'm nervous to try any of the recommendations, mainly because I've had only negative experience with this kind of advice in the past. It seems like homeopathic people always insist they know exactly what I need and then charge me way more than I could ever afford for a bunch of pills, most of which do nothing and a few of which actually make me feel worse. This guy went to a lot of trouble for me though, and he seems to really trust the people he got the advice from, so the least I can do is look into it some more. If anyone has experience/knowledge with any of these supplements, I'd love to hear about it. First suggestion: Nattokinase Hawthorne Extract Second suggestion: Capsicum/garlic/parsley tablets CoQ10 Nervous Fatigue Formula (no clue what's in that, but I know it has to do with adrenal support and imagine they all follow a fairly similar formula) Lymphatic Drainage Formula Cat's Claw

If you're talking about that tiny little bottle, I tried and loved it. I'm not supposed to be on caffeine, but I was tired and desperate and in the middle of a store that had them. It woke me up, without making me feel weird. I didn't crash afterward, but I could definitely tell when it had stopped working.

a cheap electrolyte solution would be awesome.

I always have a high WBC and tend to run a low grade fever at random, so yeah I think POTs can cause that for some people. I had a miserable time once: fever, joint aches, crushing fatigue, even worse than normal tachycardia, yet no infection was found for the longest time. Finally I told them to look at my sinuses and they found the infection! I had chronic sinusitis, but noone saw it until they looked up my nose and saw the infection. I never manifested any of the symptoms, but the infection was sure 'nough there. So infection can be hiding in strange places....your body knows it's there, but it won't always let you know where.

Just to throw in my two cents - I had a doctor explain that in order to be dx with CFS, all other causes and syndromes had to excluded. One of the dx criteria is unremitting fatigue with no know reason behind it. So if you have POTS, you can't have CFS. CFS is what you get labeled with when everything else-including all other 'syndromes'- has been ruled out. It basically means you're sick, and no one knows why. I like that explanation, and think it makes sense, but know a lot of ppl don't agree with it.

If you're worried your doctor won't take you seriously, I also have stuff you can show your doctor that explains that these anxiety feelings are more physiological in nature (like you said, from adrenaline) than psychological. Of course, all that stuff is back in my Seattle condo, but I'm sure the lovely research peeps here can provide you with that information as well. They're awful smart.

Nicotine is not considered healthy for a baby, although I had trouble getting information as to the exact risks. It does affect the fetus, and it looks like the effects on the fetus are the same as the ones to the mother, just to a lesser degree. Pretty much everything I found was focused on getting pregnant women to quit smoking and indicated that nicotine replacement therapy was almost certainly healthier than smoking, but I couldn't find a study that really examined the risks of nicotine alone. So I'd be careful, and at the very least use short term nicotine hits (gum) instead of long term dosing like patches. Sorry I don't have any research links for you, internet is acting wonky so I'm just talking from memory here.

This is my 8th year with it, so I've kind of given up on improving.

Yep, happened to me too. Hearing seems more sensitive as well. Vision and taste are worse though

I've tried Zoloft with no noticeable side effects, doesn't help with my depression though, or not much anyway. Never tried Paxil. Wellbutrin gave me a bit of energy and I lost a ton of weight on it (not that I had a ton to lose), but it made sleep problems worse.

There is also a book out about Mitral Valve Prolapse Syndrome, which I'm pretty sure is the same thing as POTS. I have it in my Seattle apt, but can't recall the exact name of it.

No point to this post really, I'm just feeling the love today. I've been so down and out lately, it's nice to feel some positive emotions for once and wanted to share the feeling. Hugs to all!