sue1234

As far as the NDRF forum, a forum member wrote her own book on her dys. experience, and kept using the forum daily to talk about her book and where she was going for a reading of it, etc., ad nauseam! She was relentless! And then she used a lot of religious-speaking in all of her posts. It just ruined the forum, where all of us just wanted to talk about our conditions, testing, questions, etc. I wish they would get it up and running again. I can't believe one person "hijacked" the forum and the owners just shut down the whole thing instead of banning one member. I kind of don't like the idea that someone that could bring chaos to a well-known dys. forum is out there promoting herself as a representative of what a dys. patient is like and goes through!

My blood pressure is similar--it goes up with standing. Yesterday it went from lying 125/77 to standing 5 minutes, 141/100, and it felt like a big adrenaline rush at that point. I felt awful. I pretty much had to sit for about 3 hours before I went back to feeling okay. I think it is the lawsuit thing too, that keeps them from digging. It's too bad it's at that point. They need to have true diagnosticians, like House!

My point is, I don't need to know HOW low the volume is, rather that the volume IS low. I was prescribed DDAVP, but before starting it, had tons of cardiac testing done. It showed my b/p can get kind of high being upright. So I never started the med. But, no one wants to delve into the issue that MAYBE my b/p goes high BECAUSE of a low blood volume, so taking something, whether DDAVP or florinef, would then lower my b/p. It's hard to find a doctor that will look at the absolute TOTAL picture. I've found lately that most of the doctors I see look at issues from their perspective only, and not taking the time to look at the whole picture, which could be screaming something out to them. It gets very frustrating. Yea, I might now have kind of high b/p, but WHY? It could be an endocrine issue, a cardiac issue, a neurological issue, and so on. I think the doctors more or less say, ok, for blood pressure issues, we run tests A, B, C and D. Then we get the results and tell you you're normal or have high b/p. Okay, but WHY? They don't go that deep.

I firmly believe I have low blood volume, but of course you won't end up on the right meds for the right cause until it is actually determined that there is a low volume problem. The few doctors I've been to have looked at every other cardiovascular issue EXCEPT blood volume. Anyone know a doctor/center that will test in the south that only requires an appointment with the doctor or center? I was reading the great DINET newsletter, and saw Dr. Jaeger mention a couple of time that at their clinic they DO blood volume testing. I really can't travel far, but can go somewhere in the south.

Mack's Mom--I just kind of look at MCAD as something that happens because a "trigger" causes a reaction, that is why I called it a reaction disorder. When I read all of that, I see that histamine is released as a "reaction" to an unknown trigger, and who knows what that trigger is? It could be wheat gluten or it could be something else. At some point we are going to talk this out so much that we will start connecting those dots, as Intuit said. I just hope it is sooner than later, so we can all have a reunion somewhere, when we are all well and can travel. I know that might be my first vacation I've had since this all started. I just know if we are going to find answers, it's like everyone said yesterday, it's going to happen in these discussions. At some point we might all say, "Yea, it happens like that in me, too". I learn so much on this board every day, especially in symptom commonalities.

Normal is 60 - 100, with 60 being normal for very fit people, so I guess 100 might be normal in UNfit people. I think 28 is really getting seriously low and I would call my doctor tomorrow about it. I can't imagine that is good for your organs to have your pulse so low. Of course, 147 isn't good for you either! But your doctor might be able to try another type of med.

I hope it doesn't last too long! Did you get some Tamiflu? Check in and let us know how your feeling.

I've always wondered about MCAD, which underlies some of your dys. I knew it wasn't a disease in itself, but a reaction disorder. So, reading the first article that you posted I saw that the researcher is looking into the connection between MCAD and autism. OK. He also states that autism is thought to occur because of "some food, stress-related or viral pathogen". OK. MCAD is thought to originate from a pathogen. We have been talking alot lately about celiac disease. In celiac disease, a "pathogen" is introduced into the gi system and the gi system releases, among other things, cytokines. In the proposed theory in the article on autism, cytokines are released when a "pathogen" is introduced. So, I can see a connection here from celiac/gluten intolerance, MCAD, and autism. Any thoughts?

Seriously, in the last year, I have wondered if there is such a thing as adult-onset autism! For instance, I have three kids, two which are in their 20s and live on their own. If they come home for a holiday, and we have all 5 of us in the house for hours, and everyone is talking back and forth, I reach a point where I feel like going to sit quietly in a room by myself(I don't). And this is from a person who, before POTS, would have my family AND my husband's family over at the same time for a holiday meal! That was me then, and this is me now--totally opposite. I have really been able to understand the "overload" autistic children might be going through.

My whole journey with POTS started one morning as I had just had two measly tubes drawn. Afterward while walking I felt lightheaded, and it has stayed with me everyday since for the last almost 4 years. So, needless to say, I quietly go into a near panic mode when I have to do labwork! I also drink extra fluids for the preceding days, and my "treat" afterwards for suppertime, is to order a steak(to go) from a local restaurant! I realize I need to replace my iron, and supplements totally bother my stomach, so I tend to eat more red meat for a few days. I have an issue with how we overhydrate before labs, though. Now remember, I overhydrate also! The thing is, is one way a doctor can see dehydation lab-wise, is to notice an elevated hematocrit, if I remember correctly. If we are overhydrating to prepare for labs, in the long run that will work to somewhat dilute the HCT, making it look in-range normal. So, we are stuck. That's why I don't think doctors look hard enough at dehydration as a factor in dys. because they casually glance at "normal" labs. Most of us overhydrate, or drink more than the average person. After I had one of my children(like 20 years ago), I remember my OB said I had a high HCT, and the cure for that was to donate blood. Well, I didn't donate, and apparently it worked it's way out. I didn't even think twice as to what it could mean. I just listened to my great doctor's explanation. Lately, though, I'm realizing that I might have had a low blood volume from delivering my baby. And I wasn't a big drinker(water, people! ) back then.

I would like to add that I mentioned that I ordered some GF snacks/foods from Amazon. If you order a certain minimum amount, not much, and use there slowest shipping, it is free shipping!

Maggie, what a nice offer! If I wasn't so nervous all the time, I'd probably go and enjoy the vacation. Maybe, one day, when I'm better....

Let me bring in my two cents from what I've read over the last few years regarding sugar and cats.(catecholamines--epinephrine/norepinephrine). For instance, someone with a pheochromocytoma has a tumor that puts out too many cats., either one or the other, or both. This in turn will cause your blood sugar to rise. With a pheo, you can have a problem with your aldosterone/renin system that could leave you with a lower blood volume. In diabetics, their sugar is high, and their body is urinating large amounts of urine to get rid of the sugar. This could make them dehydrated. Then, for instance, in someone with an insulinoma(insulin-producing tumor of pancreas) they spew out way too much insulin, so their blood sugar will drop low. When this happens, the body sends off alarm bells via the cats. and they will in turn cause the body to bring the sugar back up(hopefully!). And this can go on off/on all day and in the nighttime--your b/s drops and the cats. show up to raise it, in the meantime causing you nighttime palpitations, heat surges, etc. I would assume this might also cause these people to have lower blood volumes. I know I've had low blood sugar for about 15 years and in the last six months it has become harder to control, even though my diet has not changed. I am actually being evaluated for reasons why my low b/s has become harder to control. We are looking into the possibility that I might have an insulinoma. It sure does run my life.

I had one done about 4 years ago. The only way it affected me was a short "flushing" of my face. I could feel it getting red and warm, and I asked my husband about it and he confirmed it. That was the only "side effect", and believe me, I usually react oddly to most meds/tests! It was a breeze. You should be able to go to work without any issues.

I had one that turned out o.k. I hated doing the 24-hour b/p though. It inflated every hour while I was sleeping, thus waking me up every hour! The best thing I had done was last week--I had a sleeping pulse oximeter on. The tech picked it up at my house and called an hour later and asked why my doctor had ordered it. I told him not sure, that I get high b/p while standing, and short of breath when walking(pulmonary function tests a month earlier said I was just out of shape, but alright). He then said that I seriously dropped my O2 from 98% waking down to 86% for TWO HOURS while I slept. So, not just holding my breath for a minute or less. Just low O2. I asked if this was a problem, and he said YES. He called my internist, and by that night, someone brought O2 with a nasal cannula, like you wear in the hospital, to wear when I sleep, until I go back to my doctor this Wednesday. So, if they do it, ask for a simple O2 pulse ox with the holter monitor, as it might show something more impressive than the holter monitor. I assume I will have to go through a sleep study and then end up with a CPAP machine for sleeping.

Hi, Catlady, I get my bloodwork done for celiac this week. I am still going gluten-free no matter what! So, I guess we can compare notes on how it affects our POTS issues. I ordered some gluten-free stuff off of Amazon yesterday, as I can't walk in a store and my husband would never know what to shop for. I can handle the meat, veggies and fruits, rice, but I wanted some pre-made snacks and stuff to have on hand.

I don't really know what causes a high B6, but I know when I take it as a supplement, I get hyped and can't sleep. I know B6 is depleted when someone takes birth control pills, as I think it has something to do with clearing estrogen from the body. I know when I was first pregnant with my last child(1992), I had awful morning sickness, so the doctors gave me some anti-nausea meds. My husband and I had to go to Europe on a trip that was planned way before I got pregnant and I was miserable. The "host" of the trip took me to a German ob-gyn, and she prescribed some pills to take and they instantly took my nausea away. I found out the writing on the box said "vitamin B6" in German. Now how come my American doctors didn't know this??!!??

Sophia, Oh well, what a mix up on the New Orleans thing! I thought you were going to the Voodoo Festival, which has music for the next 48 hours or so, with Eminem tonight and Kiss/Sting(can't remember which one) tomorrow night, along with alot of lesser known musicians. When you said New Orleans music I just assumed you were heading to the big fest!

Sophia, you must be going to the Voodoo Fest! My 23 y/o daughter is in New Orleans enjoying the sights(in the rain!) waiting to go to the fest later. Enjoy! By the way, we live 3 hours away from New Orleans.

I understand about the shower. On my "better" days, I wash my hair, so that on my "not better" days, I don't have to spend that extra minute or two in there. I have dry hair so it doesn't make a difference.

Yea, I think it might be time for an Dr. Grubb appointment. It is hard when all of this dys. stuff goes along with other conditions. Let us know what he says. As far as pulse pressure, I had that this past weekend when I tried the clonidine patch. I looked it up and two causes are aortic stenosis and low blood volume(surprise, surprise!!!). I just had probably $15,000 worth of heart tests and I don't have aortic stenosis, so I'm thinking low blood volume for me--AND I HAVE BEEN ALMOST SCREAMING TO EVERY DOCTOR THAT I FEEL LIKE I DON'T HAVE ENOUGH BLOOD VOLUME! I would really like to have one of those nuclear tests that measures blood volume. I live only 3 hours away from a Texas health area that does this, I wish someone would order it!

I know we are all here for dysautonomia, but I like to remind people to rule out other causes of symptoms, to make sure they aren't contributing to making the dys. worse. For a resting high heart rate, I'm sure he has, but has your doctor thoroughly checked you thyroid out? I had Hashimoto's thyroid disease on top of my POTS, but the symptoms seemed to blend together. I had my thyroid removed almost 2 years ago, and still can't get my TSH where it needs to be because my dys. symptoms(palpitations, heat) get worse as my TSH gets in the normal range. I have to stay as high as I can in the normal range to keep my heart rate at normal. Of course, when I am up and moving, it still shoots up to around 100, but it's worse with more thyroid meds.

Boy, it's amazing how bad some people can feel with gluten issues! It's nice to hear that a couple of y'all have already found you had an intolerance to it. I'm going to be with Cat_Lady, and be doing my trial without it, but only after my gi work-up, as I may have h.pylori also, so probably will be getting the endoscopy. Since I can't shop in a store, I have already started shopping for some gluten-free foods off of Amazon. Good thing we grow and mill brown rice--that is the one grain I can eat for sure! And we grown veggies, so that department is taken care of also. I just needed to get some "snack" foods, healthy of course. I am hoping I will also see a weight loss as my gi system improves.

You sure sound like a complicated case with the heart issues, but still familiar to the dys. group. I am thinking one thing, besides your dys. issues, is have you ever had your PTH(parathyroid hormone), ionized calcium and 24-hour urine calcium tested?? With your kidney-stone-like issues and the broken bones, fatigue, etc. it MIGHT be an issue. It wouldn't hurt to rule it out.

Welcome and you will find out all you ever wanted to know about dysautonomia, and more! Except, that is, for a sure-fire cure! But lots of options that could help.