futurehope

Okay folks. I'm noticing this big time. I'm sitting/leaning while crocheting. I'm concentrating big time on the directions and what I'm doing. but..... I got really fatigued and sick feeling. Just from all the concentration. Is this POTS?? I had just figured out the directions last night on how to crochet a pineapple Christmas tree ornament. I was so happy that I could make one. I was concentrating for about 1 1/2 hours straight making this object. Bam. I'm totally wiped out and done in from doing this. And I was leaning, reclining the entire time. It's as if my brain gets tired. Can anyone here relate? Is this chronic fatigue? I guess I'll have to monitor how long I concentrate because I'll suffer if I don't.

Sophia, I'm SOOOO with you on this. I'm in the middle of a UTI myself and I'm really scared. I've already had a seven day course of Bactrim DS which really only worked for about 3 days. It is now 5 days after stopping the abx, and it's back. I feel awful. (Understatement) I'm heading back to the doctor today to get something. I'm with you. We'll suffer through this together. Misery loves company. Yikes!!! I hate being sick!!!! I hope you have a speedy and uneventful recovery.

First of all, I would NOT be concerned with expressing to a physician that you have had severe, or anaphylactic reactions to medicines. I would NOT think this would be labelled as "anxiety" in the usual sense. You are justified in your fear. And the physician would want to know. I would tell the physician and then suggest that the first pill be taken in his/her presence because of your history. If they refuse, ask the physician for another suggestion for having someone present who could administer first aid. Do you have a "ask a nurse" or "hotline" with your medical insurance that you could ask? Whenever I get an allergy injection, it is taken in the presence of a physician for the same reasons.

WW2, Another person on this forum and me, we both had Insulin Tolerance Tests. The test showed poor response of adrenals to stress. Because of the test result, it was suggested that I try a very low dose hydrocortisone (15 mg in the am and 5 mg at 1 pm) daily. This is less than the body actually needs. I was unable to comply due to side effects. Maybe you need a very low dose, one that wouldn't harm in the long run? Possibly a knowledgeable endocrinologist would know.

I've been sleeping on a tilted bed for years, even prior to displaying POTS, so I don't notice any difference in OI. I will "keep it up", though, since I do have POTS and GERD and supposedly it helps. Also, somewhere I read that there is a difference between using a "wedge" pillow to raise yourself and using something under the feet of the bed. Under the bed, as you are doing, is the preference. For GERD sufferers, a wedge can just make you have a "crease" at your midline where the wedge is, and that could exacerbate GERD. Since I have the wedge, I may not be doing the ideal. I hope your trial helps you. Let us know.

FWIW, I had purchased many Bobbie Brown cosmetics one day, when the department store was having a, "put make-up on" kind of promotion. This was before my POTS was full-swing. After using the moisturizer (all expensive stuff), I noticed a severe headache. Go figure? I tried it again. Same thing. I took all of the cosmetics back. I never thought that a substance with no discernable odor could cause a headache, but that experience taught me that all chemicals can be absorbed through the skin, and I could have a reaction. I suspect that there may be something in the mascara that you are sensitive to, in addition to the fact that you are standing still while applying it.

I'm really scared to try new medicines. Most of them make me feel worse. I can't prove it but, it was after I "forced" myself to continue and take Remeron (an anti-depressant I was taking to help me sleep), and then discontinued it after 5 months, that all "this" happened to me. I can't help wondering if the trial of the Remeron helped bring the POTS on. I don't know, but... To sum it up, sometimes you do not get back to "baseline". Sometimes you do. It's scary when you don't know how a medicine affects you.

I'm finding this topic interesting. My doctor suggested "walking in water" to strengthen leg muscles. I actually thought the idea amusing because before I had POTS I always found that being around the water and then getting out made me very tired. I can't really imagine what would happen if I tried going in the water now. My guess is that I would have an excessively hight heartrate and I would feel woozy and dizzy and scared that I even tried. I admire your courage in trying. Where do you have a pool to use? Keep us posted on your progress.

Michelle, Thank you for asking the doctor. I guess I'm the "secondary hyperadrenergic" according to him, and they still don't know what works for us.

Ernie, Is there a picture someplace of a reclining wheelchair? I'd like to see it.

Things I've done: If I know the doctor and there's going to be a LOOOONG wait, I'll tell the receptionist I can't sit that long, then I'll either go out in the hallway and recline on a bench or better yet, go to my car and have her call me when they're ready, or give me an approximate time to show up again. I don't care what people think anymore. I pull a second chair up to my legs and rest them on it. I've had some people look at me and comment something like "You look comfortable" Whereupon I say, "I need to keep my legs up for health reasons." or "It's either this or I pass out" (somewhat of a lie) At church I sit where I can get up anytime without distracting the pastor - in the balcony at the farthest corner.

Tearose, I really like that phrase "professional patient". I think I'll give myself that title too.

Diana, It certainly wasn't me that brought up the Cymbalta though I participated in the "Grubb" discussion. Marli, Sounds good to me except, I don't understand the catecholamines;specifically, I thought it was the adrenaline that causes "fight or flight", and the noradrenaline (norepi) does something else. And the hyperadrenergic folks have too much norepinephrine in their blood. I sure hope we find out something. My report from NIH shows a 699 score of norepi after a 5 minute tilt when it's not supposed to go above 400 something, and hypertension. I do NOT get fight or flight. It's been shown by an insulin tolerance test (forced low blood sugar), that my adrenals do NOT produce what they would expect under stress. Normal people get shaky and weird when having low blood sugar (from the production of adrenaline, I assume). I didn't get the shaky part. I can't wait for Michelle to get some answers.

Diana, I'm waiting to understand or hear from someone the question you asked. I asked it under another thread, and that is why would we try to inhibit reuptake if we have too much NE? Where did you find out that Cymbalta may be the way to go?

Ithomas521, During my test, the powder was put on the TOPS of the feet (among other places), not the soles. When the doctor mentioned that my toes don't sweat, I was shocked that they even could.

Ithomas521, No, I have not had my blood volume tested, but I will pursue that at my next neuro visit. Why do you ask? Is there some connection to high blood pressure? Is low blood volume "fixable"? Also, in case you know the answer (you seem knowledgeable), it seems to me we have too much NE. If that's the case, why would we use a SNRI - selective norepinephrine reuptake inhibiter?! I thought we would WANT reuptake;we wouldn't want to INHIBIT it?

I just wanted to ask this apart from the long post on the (Grubb??) article. I get hypertension on standing. My norepinephrine levels are higher than normal on standing, but my epinephrine levels are fine. I had gradual onset. Does this sound like I could have the hyperadrenergic form of POTS to you?? I know you're not a doctor and I'd have to ask Dr, Grubb himself. I guess I'm looking for an opinion. If you feel like you shouldn't answer, I understand.

Interestingly enough, in my case, my gut was the first portion of my body to cause problems, and that from a very young age. I suppose I've hardly ever had a time when my gut was "normal". And all the "usual" tests, sigmoidoscopy, colonoscopy, turn up nothing. Obviously, it's a nervous system malfunction. Needless to say, gut problems can impact your life. I wish they knew more. When I feel up to it, I'll check out your articles. Thanks for posting.

Thank you all. Rita, I told my firend to look into financial assistance at Mayo. Thanks again.

I have a friend with a sick daughter. The daughter lives in Rochester, MN where the Mayo clinic is. They do not accept her insurance. Are there any options for unhealthy poor people with much debt and no insurance? I'll let my friend know of anything you tell me. Thanks.

Ithomas521, Thanks for looking this up. It's still clear as "mud" to me whether I should care about BOTH EPI and NE scores, or one or the other. But, yes, wouldn't it be WAY COOL, if I have the deficiency in reuptake of NE and that doctor in Australia is working on fixing this and I could be helped? I keep hoping that is the case. In any event, I do not display hyper symptoms, nor do I feel them. As pertains to the report that did not mention the higher NE score, I suspect that Dr. Goldstein at NIH was looking at stuff for his particular area of interest and that possibly that score wouldn't hold meaning or interest for what he studies. Just a guess.

I'm very happy for you. I live near D.C. so if you don't mind telling me, what doctor did you see to get the special volume study done? And where was it done? Thanks a lot. (Forgive me if I've already asked this question. I don't remember the answer.)

Thanks, Ernie. That kind of makes sense in that I don't get the "adrenaline rushes" people mention when they are hyperadrenergic.

The one test I had of catecholamines was at NIH for the "intake" exam. My results are below: The first number is NE (norepinephrine) The second number is EPI (epinephrine) xxxxxxxxxxxxxxxxxxxxxNExxxxxxxxxxxxEPI Supine venousxxxxxxx334xxxxxxxxxxx19 5 min upright xxxxxxxx699 xxxxxxxxxx48 Lower limit of normalxx 80xxxxxxxxxxxx 4 Upper limit of normalxx498xxxxxxxxxxxx83 The Interpretation: Normal plasma NE during supine rest and normal increment in plasma NE after 5 minutes upright. I'm confused. It's looks like I'm above the upper limit on the NE after 5 minutes upright? Does anyone out there know? I will not be seeing my POTS doc for 4 months and I don't feel like waiting for an answer.

My best hours (with the most energy) are 11:00 AM - 2 PM. Before and after that I'm not very good. Mornings I feel like I've been hit with a truck, and afternoons, I've used up my energy for the day.