SunsetParadise49

Isn't that the patch? I'm only 17 but if that is the one (sorry just woke up and have brain fog) I've heard a lot of bad things about it. Sorry if it isn't and I don't want to scare you!!

I just had mine removed November 2nd!

Hi Gwen, this may seem a bit paranoid on my end.....and I would imagine anemia can cause some of her symptoms. But it worries me when she says she loved the tilt table, and that you say she says she's passed out several times....she isn't making herself pass out on purpose is she?

I saw a thing that disturbed the daylights out of me on Oprah last week about how many teenagers are playing "The Choking Game" where they make themselves pass out "for fun." And some bells went off when you said she actually enjoyed the tilt, because for the most of us, it's certainly a miserable test, even though it mimics what are bodies are doing basically everyday.

For any parent of a teenager for this matter, this is a highly disturbing NATIONWIDE trend that is KILLING KIDS.

Sorry if I'm way off Gwen--just sounded off to me!

Take Care

-Steph

Yeah I've heard about that Steph, but I never thought about that... but when I read that she's been passing out a whole lot nd the CFS thing I really became concerned. I know that the most least suspected people do things to themselves that they should not be doing. I'm going to try talking to her again and find some more out somehow.

I'm defiantly worse in the morning. But I'm so used to it now!!!

Don't talk to me about TTTs-I thought I was going to DIE in the last one.

I thought the same thing durring mine! I couldn't believe that she was serious!

The other thing I don't exactly understand is that she saw a cardiologist, and when I was naming some of the terms like NCS, POTS etc. she had never heard of them. So either they didn't know about Dysautonomia or they seriously do not believe she could have it. But the way she was talking really makes me wonder it sounded so much like me! Where we live, we have no pediatric cardiologist and the adult one I saw, was no help what so ever in helping me out. SO since we live within a few miles of each other I know that she surely has not seen a pediatric doctor. She mentioned that they sent her to a rhemo. doctor, infectious disease doctor, neurologist, then the cardiologist. She had a MRI, CAT scan, and the ttt. That's all the information I found out and she could still have anemia while having Dysautonomia. Also, would the time of day that she had the ttt done play a rule in how she passed the test? But yet, she claims that she's passed out several times! So who knows lol, but I will pass along the information that you guys have given me. Thanks!!

I found out later on that she a had a tilt table but passed it........she said that she loved having that test done and she was serious about it!!! I couldn't believe when she said how it was fun having that done. I know I for one hated that test and would rather never have it done again lol.

The people who were in the room with me doing the test were talking to me and I fainted twice. They weren't constantly talking but just asking like how I was feeling and I'd answer them...saying things like, "I'm dizzy" or "My vision is going black"

I guess everyone though could do the ttt's differently though and of course the amount of experiance that they have doing them plays a huge part in it.

It's amazing how little things can set it off.

Yes it is amazing....but very annoying sometimes!

Hi All!

I have a question!

Do you ever have a time when your heart races for no reason really? My heart has been doing that...it will be fine and then something as small as the phone ringing sets it off on a run. It takes about an hour or so for it to calm down and start beating as normal as mine beats lol. Does this sound familiar to any of you?

Hi!

I recently read on an online journal of someone from school that she has passed out several times and has been diagnosed with CFS. I'm talking to her right now, and she said that she also has anemia...is that a POTS thing by any chance? She has had loss of memory, throwing up, fainting/dizziness, and muscle aches. Or could anemia just have symptoms that co-inside with POTS?

Any help and advice would be great!

I saw it too, and then watched the begining of the show later in the night. It was interesting and I'm glad that some of these things that are invisible are coming out more!

Way to go!!!!!! Congrats

Yep, I get shakey too! Sometimes it's not just in my hands but other parts of my body. The one day, even my tongue was shakey!

Well, if by some chance OI would be chosen, please post it and let us know! I'd watch it even though I don't like Dr. Phil!

Hi! I just want to let you know that I sent you an email!!! So check it out and I'll be anxious to get a reply from you soon!

Gwendolyn

I would talk to your family doctor about refering you to another neurologist. My neurologist was weird too and would keep asking me the same exact question that I just had answered. Luckily, I had an MRI just of the brain, and went back for the second appointment and was discharged because nothing was wrong. My cardiologist wasn't surprised at how he acted, he said neurologists are smart but they are weird lol. I hope that you can find one though that understands what you're going through. It's not very helpful when they don't really even help you!!!

Hi Gwendolyn:

If you have to have your gallbladder out at age 17, you really really really ought to be tested for celiac disease.

"Gall bladder disease or malfunction is often associated with celiac disease. It can cause pain in the upper right quadrant of the abdomen, just at the lowest rib on the right side. In one study of 1300 celiacs in Canada, 9% indicated that gall stones were the earliest presentation, sometimes followed by many years prior to correct diagnosis of their celiac disease. In another report, Dr. Kozlowska indicated that 13 of the 41 newly diagnosed celiacs she investigated were suffering from atresia, a condition which is a partial or complete blockage of the bile duct."

http://www.celiac.com/st_prod.html?p_prodid=121

"Diagnosis

A person seeking preliminary diagnosis must be consuming gluten. Specific antibody blood tests are used to identify the presence of CD and are the initial step in screening. Blood tests include: Anti-Gliadin (AGA) IgA, (AGA) IgG, Anti-Endomysial (EMA) IgA, Anti-tissue transglutaminase (tTG) and total serum IgA. It is essential that patients with positive antibody test, and those with an IgA deficiency, have a small bowel biopsy to confirm the diagnosis and assess the degree of mucosal damage."

http://www.celiac.org/cd-diagnosis.php

<{POST_SNAPBACK}>

Is this something that also causes heartburn? My GI doctor said that there is a curible disease that settles itself in some specific part of your body....right now I can't tell you where. A blood test would find that. Also I am getting a load of bloodwork done for the GI doctor so maybe the celiac thing you talked about will be a part of that?! But thanks for the information!!! It may come in handy someday for me or even another family member.

Since my POTS is not caused by a post viral flare up, would that make a difference or not concerning the flu shot? It's just a thought I had.

Thanks everyone! Being 17, and this being my first surgery is going to be quite scary for me! Someone from DYNAkids gave me the following websites (any other info I need to print out and give to the surgeon would be greatly appreciated!) POTS surgery, CFS and Surgery.

Also, would you guys reccomend a flu shot? My GI doctor told my mom it would probably be wise. You guys think the same thing?

I hope your daughter feels better soon!

I would be more then glad to talk to her either by email or AIM. You can PM me or email me if you think she'd be interested!!! (just click on my user name to get all of that info )

Well, today my GI doctor has strongly suggested the removal of my gallbladder. I really don't want to have it taken out but my mom said I have too. The cramps that I have been having have been from the gallstones which can be in the middle of your stomach (kind of underneath your heart) and on the upper right side. He said that some paitents even have cramps on the left side and think that they are having a heart attack...which is why my mom wants me to have it taken out. She said that then if I was having an attack, we would then know if something was wrong with my heart or not. I'm really not looking forward to this consultation on October 11th, but the doctor said it is a very easy operation, and usually very low risk.

I was really hoping that he would not suggest surgery but just to watch what I eat to not prevent any flare ups, but...look what happened!!!

Also, I have a small "Sliding" Hiatal Hernia.

I'm not going to give you any advice on migrane meds since I don't get any myself but I do know that chocolate, cheese, alcohol, lack of sleep/too much sleep, not wearing correct eye vision prescription, stress, muscle tension, sinus tension,pms(for all you women lol) can all give some people migranes. Maybe you know this already but just a thought!!! ((some people think that artificial sweetners cause them too!))

That's great to hear for those of you who did try it and who actually slept! That's what I need and that's the only reason I'm on it. My doctor said that he knows about it because some of the Mayo Clinic doctors prescribe the lowest doseage for POTS paitents and their insomnia! I just hope it works for me!!!!

Well just got back from my pediatric cardiologist, Dr. Consevage. He wrote me a prescription for compression stockings, Celexa 20mg and Phenobarbital 15mg (he said that some doctors at the Mayo Clinic prescribe it for insomnia) (here's a link I just found...it's kind of interesting: Phenobarbital

While we were there my brother got an ECHO, and everything seems to be normal with his heart which is good since I have EDS as well as himself!

Have any of you ever taken Phenobarbital? He said it might not work and to give it a good 10-14 day trial and see what happens! Well going to be going now, hope you all are having a good day!!!!

Gwendolyn