sue1234

Hookworms cause anemia in its host. I'm not sure I would want a body invader that couldn't 100% be controlled, as in, well, it's causing a host of other problems in my body, so time to come out.

Welcome, and you'll enjoy the posts and points/issues brought up on this board. We all learn alot and have good conversation about all aspects of dysautonomia.

All I know, is about 6-7 years ago, I wondered if I might have porphyria. So, I tested myself. I put some of my urine in a cup, and put it outside in the sunlight and checked on it all day. People with porphyria's urine will turn purple/blue. Mine did not change.

Yep, losing hair. Used to be thick, now just about equal to a thin hair person. I started with a gray streak at age 28. I used to get compliments back then, as you said, it is something that can't really be duplicated. However, in my mid 40s, I had more gray than most my age. Oh well, IF I actually had a social life, it might bother me. The three things I remember to affect hair loss are, like the previous posters said, thyroid and ferritin levels. The other thing is people who have hyperparathyroid complain about hair loss.

I am on Xanax 1 mg. at bedtime. I would never sleep if I didn't take it. I proved that when we evacuated for Hurricane Rita back in '05 and I FORGOT my Xanax!! I bought some Benadryl and tried that--no sleep. The next day I bought some Unisom--an hour or two. The third night I dug deep in my purse and found a bottle with 1/2 xanax pill in it. Slept like a baby during stormy night. It is the only thing that keeps me sane. If I wouldn't sleep, I would be totally useless(well, kind of am anyway!!! Sitting at the computer or recliner don't amount to much).

I had it drawn fasting in the a.m. I wake up around 1:00 a.m. to go to the bathroom and my mouth is always dry, but I don't drink anything. And, of course, when I wake in the morning, mouth dry and thirsty. Thanks for the heads up on my testing! I hope something positive comes of it, and not just another dead end street. And, also want to make sure the cardio thinks with my vital signs that the DDAVP will be o.k. to try and see if it helps.

Well, Firewatcher, I retested, but we'll not know if I actually have true DI. My ADH was again low at 0.8(0.0-4.7) and this time I have a hard copy, with the blood osmolality at 292(275-295). But no urine test, so don't know that. He did prescribe some DDAVP(?), but I won't start it just yet, as I'm going to a new cardio next that is supposed to run all kinds of tests--he said he was blocking off most of the day for my stuff.

I have an overactive dreaming brain! I dream everynight, and nothing like nice, sweet dreams. I have half-nightmares all the time. I dreamed once that a guy was standing at my bedroom door, and I was paralyzed. I felt like it was real and I felt like I was awake, but I wasn't. Last week I dreamed that my window unit in my bedroom(yea, hot all the time and my central a/c doesn't cut it) was on fire and I was in bed unable to move. These dreams seem so real, and they seem to be getting scarier. I would totally believe that adrenaline causes this.

I have low D also. Speaking of parathyroids, I know that if someone has hyperparathyroidism, it causes high calcium. In this case, the body will automatically lower vit. D levels in the body so that the body will not absorb anymore dietary calcium. It's a protective mechanism to lower calcium levels. I don't tolerate the prescription or the 1000 IU vit. Ds. They all make me have worse insomnia, more palpitations, and higher b/p-----all signs of hypercalcemia. So, I wonder, if in people like me, could I be somewhat hypercalcemic under normal vitamin D levels? I know before I got POTS, every March was my daughter's first softball tournament. This was also a two-day outside event and we all got our first spring dose of sunshine. For about the 3 years in a row, I would end up with what I thought was a bladder infection, but lately think I just got a good dose of vit. D and ended up with calcium spilling into my urine, causing the bladder irritation. Who knows, but it doesn't hurt to go over theories in regards to any illness that isn't clear-cut!

DOUBLE GROSS!

Masumeh--do you remember your before-ACTH cortisol levels, and then what you stimulated to?

I have to say my peace on the microadenomas. If it is just a prolactinoma, USUALLY they don't cause any problems unless they get above around 1 cm. However, a microadenoma CAN secrete pit. hormones and wreak havoc on your body. And in the opposite condition, they can make the pit. secrete less of a needed hormone, and also wreak havoc on the body. I have been on a Cushing's disease forum for years where people were gaining 100 lbs. or more and getting all of the other symptoms, and their pit. tumors were 5mm! I had sent my MRI to a top neurosurgeon in the south, and I had just "areas" that were noticed, nothing hardly noticeable, but he said just to watch my hormone levels. I guess that's what your radiologist meant when he said to correlate with the clinical picture of your symptoms. Don't let your doctor blow it off--test, test, and test often to watch all the hormone levels. And, to agree with the others, if you would need surgery, it is one of the better brain surgeries to have, from what I understand. So, I would like to know how many other of us have microadenomas, or just "areas" that stand out and need to be watched. Kind of makes me wonder....

I know I may sound like a broken record on this forum, but when I see a certain "cluster" of symptoms, I always want to remind people to be checked for a pheochromocytoma. You have headache, sweats, elevated b/p, an vomiting--all classic signs of a pheo. Also, you said your 24-hour catecholamines were elevated, which actually IS DIAGNOSTIC for a pheo. I would think a good doctor would at least do more imaging for a pheo. I can also identify with you on the heat! I live in Louisiana, and have been under strict air-conditioning since May. When our electricity might blink off, I PANIC! But I have my back-up a/c plans--car first, generator for a window unit that would keep one room cool, or go to our business in town that is under a different electrical supplier! I also swell horribly when exposed to anything above 79F, but I am different in that I don't sweat, so that contributes alot to my heat intolerance. But, in the long run, I don't know why I am so hot all the time.

Pheochromocytoma--it is a benign tumor on the adrenal gland that "spits" out catecholamines(epinephrine, norepinephrine) at various times. It causes mostly spikes/elevations in b/p, headaches, and other symptoms, and the cure is to surgically remove it.

Cathy--have you been checked for a pheo? The pain, "pale" face, nausea, racing heart all are symptoms of one. It wouldn't hurt to double check with a blood or urine test.

I had to have a D and C two years ago(my meno body was not sloughing off my thick uterine lining!). The whole procedure lasted maybe 3 minutes. But the actual pain part was about the last 30 seconds. When she was done, she helped me sit up, she looked at me odd, and asked, "Are you o.k.?!?". In that last 30 seconds of pain, I had felt my face get burning hot, which has never happened in my life(many surgeries). So, when she said that, I just knew my face must have been bright red to go along with how burning hot it had gotten. It felt JUST like an over-the-top rush of adrenaline, and it was a very unexpected and new reaction for me.

Wow, glad you found something that can bring you back into "normal" life! After I read that you went shopping in Wal-Mart, my first thought was, "They have a Wal-Mart in Kenya??"! But, then I saw that you were still in the States:) That is great that you got to shop--that will be my first experience whenever I get "fixed" by the right doctor.

Sandy, Sorry you had such a bad time. As far as the b/p, personally if it happened to me, I wouldn't be concerned with a one-time high. If it would continue, or go higher, I would call your dr.'s answering service to see if you could have him call you. It may have been from the pressure of being in such pain. Did your migraine get better?

Maybe you could bring a brief print-out of a description of POTS and bring in his bottle of meds to "prove"(by way of the doctor's treatment) what is happening to his BODY that ultimately happens to his cognitive issues. Then she could use this information to better understand EXACTLY what is going on with him. Hopefully she'll see that environment plays a big role in his abilitites and maybe will find a way to accommodate him.

Have you had your thyroid levels checked? You could be hypothyroid, which would cause your metabolism to slow down.

I was just seeing some of the posts/signatures about antidepressants. I took Pamelor(nortriptylene) back in the 1980s for anxiety/panic. After about 7-8 years on them, I started feeling worse ON them, so quit. Did ok for quite a few years, then off/on Xanax for the last 8 years. I tried various SSRIs in the 1990s, but all of them kept me from functioning in one way or another. I'm just "theorizing" if there is any way taking the antidepressants WAAAAAY back then could have prompted my body to be oversensitive to the catecholamines now. Any thoughts on this???

I know omega-3 oils are supposed to be as good as anti-depressants, but I don't know from experience. I personally don't take any, but have read alot on how the omega-3s(fish oil) helps other people's depression.

Have you given magnesium a shot? You could try a few hundred mgs., and work your way up to bowel tolerance. When you hit that dose that helps you "go", then you can maintain or drop, according to your "needs". It might be worth a try.

Oh, how nice to have some affirmation! Please keep us posted on how it works and how you feel in the next few weeks as your body adjusts to having more fluid.

I'm not sure if immediate diarrhea is a POTS symptom(I don't have it). My first thought was Addison's. Have you been checked for it? I know with Addison's vomiting and diarrhea are prominent symptoms when their cortisol is way low. Good luck.