issie

Has anyone tried Iodine/Kelp? I've been reading about it recently and it seems like it may halp some of our issues. What's your experience, and how has it helped you?

Has anyone tried iodine? I've been reading up on it. I guess it is supposed to help thyroid issues and the balance between the thyroid-hypothlymus-adrenals. I think the adrenals have allot to do with the bood sugar drops, in my case. I've had times when I would nearly faint from the BS swings. I've had high BS at times too. My doctor had me start taking GTF (glucose tolerance factor) Chromium. It has totally leveled out by BS and I don't have much of an issue with the swings any more. I used to wake myself up at night with the BS drops. I sleep through the night now. And my BS is normal in the mornings.

Thanks Maxine, I wondered why this happens. I have the EDS-III type too. This blood pooling thing is for the birds. I wish there would be something other than compression to help with that.

Tetnus comes mostly from rusty nails, etc. If you know the cat, it will probably be okay. It can however get a nasty infection. Watch it carefully.

Yes, hun, you're not alone. Been there, had 8 abdominal surgeries for endometrosis. I'm on the run tonight, but if you type in endometrois into the search engine, you can see most of my replies in regard to it. I'll write more later. Let me know if you read them, so I won't repeat myself.

By the way, if your oxygen goes below 90 they usually put oxygen on you. You may check it at night when you are just about ready to fall asleep and see if it is low. Mine was. I had a sleep study and they found sleep apnea, but I also need oxygen at altitude. I've recently moved lower down and don't need it here. But, when I go up higher - I do. I don't know what came first --the apnea or the POTS. But, I feel there is a connection.

I do this too. The reason is, I hold my breath when I walk, especially upstairs. My sister does this too. Then when you get to the top you feel totally exhausted because you cut your own oxygen off. Pay attention the next time you go up the stairs, or down for that matter. I think we had a thread one time on this. It seems there are quite a few of us that don't breathe properly. It was suggested to me by a Mayo doctor to get a CD from Andrew Weil entitled "Breathe". It's supposed to help us learn how to breathe properly. I think that is one of our problems. And yes, especially with POTS your pulse rate goes up upon standing and movements. If it goes down you probably have another form of autonomic dysfunction. With POTS the pulse goes up at least 30 points or they don't consider that you have POTS. This is from lying to standing.

Alright, NOW I'm really jealous. Everyone there on the east coast with POTS and EDS are getting to go. Us out here in the west are struck with envy. You guys be sure and fill me in okay. Glad you're getting to go, hope you can help us find some answers.

You are welcome. I figured this out the hard way. I had been using it to help me sleep, but my BP would drop out and I'd wake myself up and have to walk around to get it up. Also, they use magnesium for pregnant women when their BP is high with the pregnancy. It especially lowers the Diastolic. Glad you got it figured out too.

Just be careful with the magnesium. It can cause your BP to drop and the orthostatic issues to be worse.

Maxine, I'd love to hear your take on the conference too. I hope the neurosurgeon has a good answer for you. Please let me know how you like him. At some point in my life I'll need one, because I have a brain tumor on top of all this. With the EDS, I always feel like I'm crunching into myself. I tell my husband that all the time. Tell me about the EDNF organization. How do you join it?

Another great tip for putting on hose, is get rubber gloves. You can just slide them up your legs, the gloves grip the hose and WALL LIE their on.

Yes, I do too. I thought it may be related to a tumor on my thyroid, but the doctors didn't seem to think so. Please, please tell us all about the conference when you get back. Even if you just PM it to me. Finding help for two very complex issues is so important. Wish I could go.

sugartwin, I'm sorry that happened to you. It is horrible when people don't recognize our illness. I used to wish for purple polka dots. Now, I just have to laugh and say, "Be careful what you wish for because instead of purple I got white spots. I now have vitiligo. Where you lose your skin pigment color." Nothing can be done, but there is a visible clue. I had a friend do me that way and make me walk miles from a place I was very unfamiliar with. We took a trip together and because she wouldn't ask directions, she walked us in the wrong direction of where we were headed. She got mad because I started having a POTS eposide and had to sit down and nearly passed out. Because she missed the event she was headed for, she left me -- in a foreign country and I have direction problems. I was so scared. At the time, we didn't know my diagnosis and she said that someone else would have helped me if I'd fainted and fallen out on the ground. Needless to say, we don't talk any more. I don't need uncaring friends like that. I did make it back to the hotel, but was really sick afterwards. She never really apoligized, just very half heartedly. I just chalked it up to her "probable" mental state, and gave her the benefit of the doubt. If I hold on to the anger, it doesn't affect her in any way --- but it sure does and did for awhile affect me. Are you aware that there is a state assist program for people who have money issues due to hospital bills? You can apply at the hospital and you will probably qualify for the state to pay your bill. It is based on your income past. Hang IN There, we've all been in the same boat and we will continue to paddle together.

Ha! Ha! Maxine. Order me mine -- the helmet. Been there, done that!!!!!! Keep on Keepin' ON!!!!!!!!!

Maxine, You have got allot going on. It can be soooo overwhelming and consuming. The answer to your question as to why we have to figure it out and our doctors don't; is, the doctors are trying to see so many patients that they are required to see or lose their jobs. We are so complex with our issues and they just don't have the time to research it. Not only is EDS rare but so is POTS. There are so many variables that go along with both of these problems. Unless a doctor has the ability to do research or is in a learning center, or research center - the regular issues are all they have the time for. It is very disheartening when they don't listen to us and when they don't read our charts - when it's right in front of them. But, even though we are asking them to be a part of our world - they may not choose to be a part of it. At some point, we just have to realize that we may not find the magic pill or the cure for this. In that respect, not that I've quit looking, but I'm trying to not dwell on the things I can't change and try to enjoy the things I can enjoy. However, small that may be. I'm finding that I'm not so dreary all the time, by attempting to do this. I don't want ALL my conversations to be about well ---POTS. Although it's hard to ignore it when it stares you in the face -- all the time-- like some geeky friend you can't seem to get rid of. Someone saying, well I have that too, doesn't help it -- in your world. No one really understands what you feel like or how this makes you feel. But , the truth of the matter is not too many people really can come into our world and truley understand. We allow other POTS people to know what is going on with us, because we all understand. But when someone is a realitively healthy person ==THERE IS NO WAY, they can understand or really care enough to ponder over all the information we gather to try and help ourselves. I don't mean for this to sound insensitive, but when I came to realize this, it was like oh, okay I understand. Then I didn't get so mad when I'm mis-diagnosised or they overlook the obvious. I'm not having to deal with anger. The anger can make you very sick too. Especially if you have the hyperadrenal type of POTS. (All of this is from a learning experience I've gone through. I have all these things I'm speaking of. It is a day to day thing that is a work in progress.) Take a deep breath and realize tomorrow is another day. There will be a doctor that can and will come into your world to help you. You just have to find him. It's a journey, just one we wish we weren't on.

I know, it horrible. I've recently developed fatty liver too. I was on replacement because of having already had a hysterectomy for endometrosis. I understand the pain thing. I'd had 7 other surgeries for this before the hysterectomy. They told me it was relaed to the replacement. Too much estrogen. I know with endometrosis, they say, that it is an imbalance in the hormones - estrogen vs progestrone. I wonder if just plain progesterone would help the pain you have rather than estrogens? I'm just doing a really strict diet right now and switched over to RED Clover for my replacement, instead of an RX. This was one of the suggestions from the Mayo doctor. It has really helped the hot flash and sweats issues. Oh well, trial and error. One thing I do know, tumors in different areas supposdly go along with POTS. Why, I don't know. I also have a tumor on my kidney, thyroid and brain. So, explain that one.

Not only can insulin resistance cause fatty liver, but so can hormones. If you're on any type of birth control pills or replacements it can cause fatty liver. A good portion of the time, insulin resistance or metabolic syndrome are factors.

I wasn't sure what the term circulatory collapse was, so I Googled it. It is surprising that so many things can cause it. One article I read said that too much magnesium by a man in the hospital who was given this as a laxative, had it due to the magnesium. I know magnesium can cause orthostatic issues, it will lower your BP. Personally, I try not to think about the fact that this could be a death sentence, but look at the positives that I can find with each day. If you dwell on the negative possibilities, you won't enjoy the positive probabilities and the present. Sure, it's in our face every day and we have to struggle day to day or minute to minute. But, I think it's better to let the glass be half full instead of half empty. A positive attitude even if it is only for one hour a day is better than gloom and despair ALL the time. (Just thinking out loud, something I have to remind myself of. Something to TRY to put into practice.)

Your doctor should know if you're in the safe catagory to drive. I seldom drive any way. But, if there were an emergency, I need my license. I've never passed out, but do have times where I know I shouldn't drive. I pay really close attention to my body and go from there. If you think about all the people who are impared from prescription, mind altering drugs - you'd be scared to death to be driving at all. If you're concerned about it, ask your doctor what they think. You wouldn't want to be responsible for the death of someone else, by passing out. Not to mention --if your problems aren't bad enough with the POTS ---how the break ups on your body would hinder your life. I know, I'd rather have to have someone drive me around than to possibly have really hurt someone else. It's a hard thing to have to come to grips with, but we all have to admit to ourselves that we do have limitations. We just have to decide how much of a limitation do we have, for the good of ourselves and others.

Maxine, I just read my July 2010 Life Extension magazine. There is an article on Parkinson's - I always take an interest in this since having at first been wrongly diagnosised with this. But, it gives some REALLY GOOD alternative things to do to get your dopamine levels up. You can probably get one at a health food store, or possibly look at it on line. Maybe, that's why I'm better in the shake department - I've been doing most all the things it suggested already.

I've found the greatest thing for the gas issues. Believe it or not -- it works. -----------------Lemon Zinger Tea--------------------------------- Try it, you'll like it!!!!!!!!

Before they figured out that I had POTS, I was diagnosied with Parkinsons. Because I couldn't take the sinement - a dopa drug. We tried Wellbutrin and Lexapro. For me, at first it helped - then the shakes and weakness got ALLOT WORSE. Then she diagnosised me with multiple system atrophy. Not believeing that, I went to Mayo and got the diagnosis that made sense POTS. I don't take either at this time, but have at times felt like a seratonin helper would be beneficial. I'm not sure if taking something to up dopamine is the right thing, especially with the adrenal issues. But, there is only one way to find out. Realize that if you start shaking and can't get up out of a chair (like I was), it could be the drugs. Although, I still have these issues, they are not NEAR AS BAD as they were on the meds. I attribute a very bad decline to the meds. (Keep in mind that everybody's body is different. What will work for one will not work for another. So, really all you get here is what has happend for another persons body. Your's may respond very differently.)

I don't know if any of this will apply to you or not. But, at first before my POTS diagnosis I had horrible muscle pains. There would be literal knots that would not relax, no amount of massage would help. I tried magnesium thinking this would relax it, but my weakness got worse with that. My arms got so weak I couldn't, at times lift them and they really hurt. It hurt to bend my fingers and to walk the hips hurt really bad. They diagnosised me with Fibromyligia and oseto arthritis. Since then with more testing, they found out I have Ehlers Danlos. The doctor told me that with this you will hurt all over because of the laxity of the tissues you are constantly trying to hold yourself together. Your muscles get fatigued from doing this and you get some severe arthritis feeling symptoms. Also, in addition, you are predisposed to osteo arthritis more so, because of the EDS. At times, I do take Advil and it helps with the arthritis inflamation.

I've had the same type of experiences. Never could explain it. Wish we could find an answer.