sue1234

I saw it on another recent post some members talking about celiac. I have PMed a couple of members over the last week to ask them if they were tested for celiac since their gi issues were on the severe side. I have had bloating for about 10 years, sometimes so much that I am short of breath. This preceded my POTS by about 5 years. I just went to a gi doctor yesterday and she agreed that celiac or gluten-intolerance COULD be a reason for my bloating, so she ordered all the anitbody testing for it and will probably do a scope to biopsy things. Then, I am going to go on a voluntary gluten-free diet to see if things change for the better. I have read soooo many gluten stories about people that didn't test positive, but eliminated gluten from their diet, and their gi problems vanished along with alot of other health issues. That all makes sense, as if the small intestine is damaged from gluten, we would not be absorbing our nutrients. Just remember that if you go to get tested, you still need to be eating a diet WITH gluten products in it.

I tend to have the hyperadrenergic form, but for probably the last 10 years, no matter how tired I am, my body will not nap in the daytime. It's like when I get up in the morning, my "switch" is turned on. I can drag and drag all day from a bad night's sleep, but not be able to take a nap. Then, thankfully, XANAX turns that switch off at night. And so on, everyday. I mean I remember for the 30 years before I was able to nap if I was tired, but not for 10 years now.

That sure sounds plausible. I do what I can to get through the morning, and then I improve the rest of the day. Of course, not enough to actually do something noteworthy. I don't make any appts. for mornings. The only thing I will do outside of my house in the mornings is fasting blood work, and I can't wait to get back home!

This is so embarrassing, but my house is so junky right now from not being able to hardly do anything. Last Christmas we asked both sets of parents for money so we could have a "house cleaner fund" to maybe pay someone to come in once a month. BUT, we would have to CLEAN the house first, to even let the house cleaner come clean!! I think I will ask my grown kids to give me that for x-mas this year, a couple of days where we can all get together and sort through all the house. Don't get me wrong, I'm not a hoarder, just 4 years of not dealing with stuff that has come into the house in a timely fashion or putting all the clean laundry where it should be.

Notgivingup--you can just let your foggy brain write where ever it wants to! Yea, I thought it was going to meelllooww me out, but nope. Ruekat--I was wondering about the over-reaction. I feel I don't have enough blood volume, so I would think that a normal dose of meds under those conditions would possibly be too much. Does that make sense?? And, nice to know I'm not the only odd reactor to clonidine. I almost forgot, I emailed the prescribing physician(cardio) and he wanted me to continue on it for a few more days!! I think NOT!!! Anything that is going to make me MORE lightheaded is not going to be tolerated in my house!

It did make me somewhat dizzy, which I am usually not, and definitely more lightheaded than I usually am. It seemed to give me anxiety, and that's what made me check my b/p. I was not nervous about it at all, I was engrossed in a tv show when it started making my heart beat faster and harder. I don't think I had worse brain fog, but it made me more anxious.

Please don't let my experience keep you from trying it. I've read your posts on why you want to try it, so go ahead. All it did was give me an afternoon of feeling bad. It might work for you. I just seem to always react badly to most meds. I don't know why my pulse pressure was getting narrower(is that a word?). All I could imagine was my systolic was going to meet my diastolic halfway, and then what?????

That's interesting. I've always thought I could get an illness and actually not know it. My already flu-like, lightheaded feelings would mask alot.

Excellent air-conditioning, recliners, and definitely a saline IV! Nothing hot for me, please.

I started the clonidine patch today for my b/p that starts out fairly normal then rises the longer I am up and about. So, I took a resting b/p this morning to have sort of a baseline, so I can compare it in the next few days to see if I'm getting a good trend. My b/p was 125/85, pulse 72. Then at noon I put my patch on. WELL, after an hour with the patch on, I was watching tv, I noticed I was getting palpatations and my hands were a little shaky. I took my vital signs and my b/p was 111/87, pulse 92. Soooo, I took the patch OFF and cleaned the skin. It took me all afternoon to finally feel like I could stand and not feel immediately lighthead. What kind of reaction was that?????? My systolic went down, but the diastolic went up! I was feeling awful, and was not going to sit around all day seeing how v sys/^dias was going to go! When my heart starts forcefully beating, I know somethings wrong.

High cortisol can be Cushing's disease. It usually has symptoms such as abdominal fat, extra body hair, purple stretch marks, "moon" shaped face, loss of menstrual periods, and more. Does that sound like you? I myself have had my cortisol levels checked a few times, and on morning in the ER a serum cortisol was high, but none of my urines have been.

Futurehope, The only thing that works for me is a big glass of iced tea every morning. I can't handle coffee with the extra caffeine, but tea works for me. Of course, I have my days where nothing works. I just started this week adding in ALOT more vegetables, like beans, cooked veggies, etc. and, yea, it's giving me gas, but also bulking up my stool(TMI!). On another note, I saw in your tag line that you have low blood volume. I believe I do, but don't know how to find out. How did you get tested?

SIBO--small intestine bacterial overgrowth.

I'm sorry! I posted the question, then left town for 3 days, so missed the time line that y'all didn't know what article I was referring to. I see alot of bleeding, clots, and ovarian cyst issues from all the posts. I guess y'all that had it at a younger age had POTSy symptoms way earlier than someone like me that (no birth control) had perfect, every 28 day periods until I hit 40, then all h@ll broke loose. I personally was not able to handle bcp at perimenopause, and still in meno, as they made me way more tired and listless, and made my IBS more constipated. Thanks for all the stories, and maybe someday some researcher might see these answers and see a common thread, or a hint, at least.

I can't use any probiotic(pill or yogurt forum) as I am already bloated and if I take it I HORRIBLY BLOAT for weeks. If I could breath okay while bloated I wouldn't mind, but it makes me short of breath. I am the poster-child of SIBO, and asked a doctor about 6 years ago to test it, and he claimed I was negative. I'm not sure I believe that.

I can say for myself, my menstrual history was perfect(no bcp, absolute normal cycles) up until perimenopause: age 37-39-- increasingly flooding periods, every 3 weeks(didn't take any iron, didn't even think about it, dr. did not mention it!) age 40--large cyst on one ovary, had it removed, along with uterine ablation age 43-now--other ovary with off/on large cyst, but tiny, normal monthly bleeding r/t ablation age 46-now--once or twice a year regular bleeding(guess ablation didn't completely stop it!) age 49--FSH up in 50s, told menopause, HOWEVER, at the same time having MY YEARLY PERIOD! Ultrasound shows normal tissue buildup, so doctor says not to be concerned. They say average age of onset of FMS in this story is 45--right in the middle of perimenopause. My POTS started when I was 46. Low blood volume r/t irregular menstrual cycle? Off-kilter hormones, more than average person?? Who knows. But we can still look for common threads. I know the guys don't apply here, but the majority of, at least FMS, is in women. So read the article Ramakentesh posted and see what it says.

Great article, and brings up the same common factor--low blood volume. I am going to ask my new doctor today about all that volume stuff. I am going to start a new thread on this, but it was interesting about the menstrual histories on the women.

It may be great and it may be a dead-end street, but at least he's willing to look into my problem in depth.

Sorry it's too much right now--hopefully you'll swing into something better by tomorrow! I saw someone else's post about B12 and I thought of that when I read about your burning. Have you had your B12 levels checked out? Low levels can cause nerve pain. I know about sensory overload. I can't watch vivid war-type movies anymore as they are just too stimulating.

I take a full 1 mg. at bedtime and it sits fine with me. I am usually very sensitive to meds, too, but I guess this is ok with my system.

I'm not sure. I started with constipation, then turned to diarrhea. This kept me from leaving my house in the mornings, still does. And, of course, in between at the g.i. doctors, getting colonoscopies that require severe laxatives. I just wonder if over time we might have messed up something that balances our fluid. I don't know. Just thinking.

Whine all you want! We are here to read and support. Sometimes, this is the only place we can gripe and people REALLY understand what we're going through. I actually had a decent day yesterday. Maybe happens 3-4 times a year. I cooked supper! That doesn't happen very often. So, I spent all evening thinking, "what did I eat the day before to feel better?". Of course, didn't eat anything new or unusual. Just would like to know what happens to get a good day! With you mentioning digestive issues, I started a thread on it. It seems like alot of us have digestive issues.

I started with bloating, IBS symptoms about 10 years ago. That was the only issues I went to the doctor for, except for regular checking of my thyroid. I still have my IBS symptoms, but POTS came on board 4 years ago. Before IBS, I was pretty well and healthy.

I started with my POTS almost 4 years ago. The thing that definitely came along with it are(beyond the usual s/s): intolerance to light(never wore sunglasses my whole life, now can't see outside without them), extreme heat intolerance, and one of the strangest things--I get real nervous when I have to get into a conversation with people, EVEN MY PARENTS! I used to be in community organizations, blah, blah, and had the usual "stage fright" if I had to speak in front of groups of people, but now, I pretty much don't go out to visit people, even family. When I have to talk for a few minutes, my body clinches, my heartrate goes up, and feel soooo lightheaded. This is not what I was like for 45 years, so it really confuses me.

Low here also on vit. D. Someone mentioned that there might be reasons why our bodies are so stubbornly low on vit. D. One reason, I'll mention, is if calcium gets too high, vit. D is automatically downregulated in our system--in other words, our bodies quit making it. This keeps us from absorbing any more calcium from our intestines. I'm not saying all of here started out with high calcium, just mentioning this in case SOME of us might have calcium metabolic issues. I have not totally ruled that out in myself. When I turned 40(49 now), I thought I'd better start taking calcium supplements to help my aging bones. I felt AWFUL on them, bloated, etc. I was in the sun for hours during the day(deep south), so I should have been fine in the vit. D department. Quit taking the calcium. Over the next few years I spiraled down into pre-POTS, then full blown almost 4 years ago. But, I still do not tolerate calcium hardly at all, and don't tolerate vit. D at all either. I had to take the prescription dose at one time, and I felt just like people with hypercalcemia feel--higher b/p, faster pulse, worse insomnia, constipation. I quit the vit. D after a couple of doses. So, being that I fight these symptoms on a daily basis to some degree, I wonder. I urinate alot, and hypercalcemia causes excessive urination as the body is trying to get the excess calcium out. I think sometimes, if my vit. D were normal, would I be hypercalcemic daily?? In other words, would I have an outright case of hyperparathyroidism?? Of course, not many people with parathyroid issues complain about orthostatic issues, but could I be a subset because of the fluid losses and then not keeping bodily fluid homeostasis?? I think too much! But, then again, if I don't think, who will--surely no doctor!