sue1234

I have no answers, but can commiserate. A year and a half ago, seemed to kind of "wake up" and could do things here and there. I began helping my husband at work a little, and slowly built my time up to a couple of hours(sitting mostly, but productive). I actually made it greatly through my son's wedding. I finally felt confident in posting about my 6 months success, and then about 6 weeks later I spiraled back down to my normal POTsy self. I have been over and over in my mind about what I did differently...what did I eat? what supplements? I tried recreating some of those things, but never could get back to having the energy. So, no, I have no answers because I don't know why I got better for about 8 months and then crashed again.

Thanks for your updates!

I'm wondering about your resting heart rate only. Have you been worked up for the usual things that might cause a high heart rate? Like, iron deficiency anemia and hyperthyroidism? (I'm no expert or even a medical person, just thinking out loud on WHY would your resting heart rate be high to begin with?)

Thanks Looney and Corina. Yea, regarding vitamin D, it does make sense. Now that I really think about it, even though it is true that we all probably catch the flu and other viruses in winter because we are all cooped up together more, in summer our vitamin D levels are elevated(in general for "normal" people) and we all are less apt to catch the flu, etc., even though they are still around. I have got to make myself go out and get sun all summer and really build my stores up! It is just a challenge with the heat.

I saw the doctor yesterday, and I am going to start a course of an antiviral. She seems to think it might help, but even if it doesn't, she wanted me to be able to try and find out. I like this doctor, as she is testing things other doctors have not looked at, AND willing to try me on meds/treatments just to see if they help. I can't wait to see if the meds help with my fatigue. It would be nice to have some mental/physical energy back. She asked if I was still trying to get my vitamin D levels up(from the teens), and I told her I've been taking my vitamin D3 10,000 IU weekly, and even got some sun a couple of times last week. She said good, that vitamin D needs to come up to the 70s. I said I've been slowly working at it for a few years, really working hard at it this year, but it is slow to rise. She said "as it builds, it is just getting used up against the EBV", that vitamin D is actively involved in fighting infections. That would make total sense to me, as I cannot get my levels above 30ish(once). I am hoping the antivirals will knock the EBV down and at the same time I can get my vitamin D levels way up. Possibly that will keep the EBV forever low in the future.

I have a feeling your results will get your doctor really moving on this issue. Hearing that the technician had never seen someone do what you did in their 12 years doing that test tells you how serious it was. I know the 30th seems a long time away, but your wait will bring results!

Thanks, Corina!

Katy, I don't have EDS, but I have been having "looser" joints since POTS hit. Like when I'm walking(for exercise), I might have an instant where sudden pain happens in my foot and I have to quit. It is hard to explain, but it is like something shifts in there where it is not supposed to. I might limp around for the next hour, and then it immediately goes away at some point. That's what makes me think it is a shifting within a joint. Ugh!! Goschi, it would never hurt to do a food diary. You never know! Thanks for your replies. I don't want a hip replacement, due to the restrictions on range of movement for months afterwards. I am so limited on how I can get comfortable sitting or lying down that I'm afraid I'll continually put it in the wrong position. Besides the fact that I am physically deconditioned and would find it hard to go through rehab. But, I'm not sure I have much time left to avoid the procedure.

Thanks. The reason I ask is because I have on 2 occasions been found to have high free copper. I was testing things for Wilson's Disease, and even though my copper and ceruloplasmin themselves were normal, the calculation for free copper came out high. All i know is high copper can possibly deposit in the brain. So that's why I was asking! Please update us IF they do explain it to you during your testing.

Can I ask what exactly the metal is they're looking for? And, is this random, or do you have a certain issue that causes them to look for the metal?

Here's to hoping your appt. goes well!!

I have been having an off/on sore hip joint when walking for the last 2 years. I can go weeks and it is fine, then one day I'll just be walking or I stood up too long for the day and it is sore. This will last about a week and then back to being ok. When it hurts, I don't take anything for the pain(just 1/2 a Tylenol every few months). About a month ago it went out again, but this time it hurt really bad to put any weight on it, so I limped around leaning on walls and furniture. It went away again. I went to see an orthopedic surgeon to see what was going on. I was born with congenital hip dysplasia that I had to wear a brace for it as a baby. My hips got ok, then I went the rest of my life without any problems(50 years). So I thought I would have that looked at. Well, the doctor told me I have zero cushion left in either hip AND both have arthritis!! I was not expecting that, as the other hip does not hurt at all. Also, why would my hurting hip go through weeks of NO pain?? He said the only option is a double hip replacement, that nothing other than surgery would help the joints(neither pain meds or therapy would help). I said I will wait until I can no longer handle the pain. Since then, I have just gone downhill!! I have had to get a cane and borrow crutches. I don't know why it has gotten so bad in the last few weeks, but I cannot continue indefinitely like this. I wonder personally if my hip just gets slightly out of joint, it hurts, then somehow goes back in and then no pain. It comes on that fast and leaves that fast. I would think no cushion and arthritis would mean it should hurt all the time. Anyone have any experience with this?

I don't have that exact feeling, but I do have "odd" temp feelings on my skin. For the last few years, it is not just the heat that bothers me but the sun, too. When I get in the spring or summer sun, it takes about 1-2 minutes before it feels like a hot iron is being held 6 inches away from my skin. It seems my skin is "overfeeling" the sun, if that makes ANY sense. I used to be outside all the time before all this, and never had issues with the sun(or the heat). I have no clue if it is related, but I am trying really hard to get my low vitamin D levels up just in case that influences something in the skin on how it handles sunshine.

I never have had this happen. Maybe it's a good weird thing???

I don't handle elevation at all either. It stops my bad ear up and then the slight vertigo sets in. As far as stopping for the bathroom, that's just how we roll now. Of course as we are getting older the old bones don't like sitting real long so stopping frequently is good for that too. Good luck on your appt. What kind of specialist are you going to see?

Well, Katie, it could be that neck issues are related to the temp issues. I have kept up with the MS research where they say that opening up the curvy veins in the neck clears up their dysautonomia issues...with heat intolerance being a major one cleared up! Some MS patients have been claiming this for a few years. (Of course, some researchers say it does not clear up MS, but patients say it clears up the symptoms). So, who knows??? I'm glad you're finding the benefit.

That's interesting. Thanks for the link! I have noticed over the last few years when I try to take vitamin C to help my bowels move, after a day or two I get soooo tired. That always makes me quit taking it. Now I wonder if maybe it is a viral die-off causing the fatigue??

It's finally here! Good luck and we will be waiting to hear from you when you feel well enough for that. Sending lots of positive vibes to you!!

Thank goodness! Let the testing begin!! So, the next question is, do you have to be a patient of either of these institutions to be a part of the next phase of studying?

Regarding the midnight test, that's what I've heard! It is hard to just have it done anywhere! My a.m. serum cortisol had been sitting around 23.5(? - 25) and my a.m. ACTH has been around 50.5 (? - 60). I have had a morning cortisol a few years ago come back at 27(? - 25). For some reason, these numbers don't get any of the doctors excited. To me, it shows my body is working overtime to keep it going. I don't like my hormones being on constant alert mode! Keep us updated.

I have been having rising cortisol levels over the years since POTS began for me. My cortisol and ACTH keep sitting at the very top of normal. Can I ask what your numbers were for your cortisol? Serum or 24-urine? Keep in mind that meds like Reglan to help the stomach move can raise prolactin levels(also being hypothyroid, I think). So, don't know if you are taking anything to help your stomach.

Leg pain is something I've picked up in the last year. It is from the hips down. I do have one bad hip joint, but I don't think it explains all the leg pain that occurs from standing longer than a certain amount of time. The only thing that helps it is my nightly sleep.

Oh definitely! This may be a dumb question, but have you been to a pulmonologist about your lung? I'm assuming you have. This may be all out of the realm of the GP, and that may be why he's acting uninterested. Sometimes I think they act that way when they are trying to get a patient to leave and go on to another doctor.

Katy, your description of "3-D" when riding in a car is awesome! That would be a great description for me to use about why I quit driving 15 years ago. I just feels like everything coming at me too fast, and yes, from all angles. It definitely causes panic in me, so I quit trying years ago. AND interesting about it possibly related to the neck issue, as if you remember, I have that cervical stenosis issue, too! I want to definitely see if that gets better for you after surgery. If I knew I could drive again, I'd get mine fixed. But then again, I'd have to get my stomach issue taken care of so I could sit more upright too. Too many hurdles!

Warm liquids make everything vasodilate(soup,showers,etc.) When that happens, it's like my brain loses the ability to think clearly and my vision gets blurry.