skiberthoud

I also used to have the horrible pain as well. Was SO sure my gastroparesis test was going to be a huge positive, but it was not. I also have GERD and a hiatal hernia (since birth ). I've worked on my digestion a lot with my naturopath. I've detoxed and changed my diet, as well as increasing my probiotics and making sure I take my digestive enzymes. From time to time I still will get some discomfort but it is much better. I hope you are able to find some permanent relief soon. Oh, if you like to read my favorite book about digestion is "Digestive Wellness" - good read with lots of info. Take care!

Yippee!!

I went down the whole Lyme route. I had testing through Igenix and Neuroscience Labs. Both tests came out equivocal. Testing alone cannot diagnose lyme. Results along with the clinical manifestations and history as seen by an experienced lyme literate doctor is what can make the diagnosis. Though my test results were questionably positive, my LLMD does not believe Lyme is my issue. I'm grateful! I believe that Lyme is very real and very under diagnosed. I hope that if you are seriously questioning this diagnosis for yourself that you do your research and really find someone that can help you.

Sometimes it's that way for me, too. Seems to coincide with the childrens bedtime - they go to bed and I suddenly feel better. lol. Joking aside, I have clusters of days like you descibe, but it's not how it always is. I've wondered if it has anything to do with my cortisol, or something related.

Sorry for your frustrations! I agree Chaos - at least you now know about your EDS diagnosis. That knowledge will prove helpful in dealing with what comes your way as a result. But sometimes we all just "want a break." This isn't the way we were created to live. I'm glad to hear that you have been making some good gains! I hope you are able to focus on the positives and keep making advancement! And I believe that one day all our ailments will be a thing of the past and we will get to live the way we were created to live. Can't wait!

Yeah, my first thought was CNS - upper motor neuron lesion typically. Although there are other causes as well. I've seen it med-induced. One of my children also had myoclonus for the first two years of her life. Never found anything and it self resolved. We'll see if it shows up as something else later in life... Sorry you have to add another thing to your list, Rissy Keep searching.

I'm happy that you're going to be somewhere surrounded by love and support! I wish you well...

I definately do better in cold.

I've been toying with the idea of astragalus for a few months...have a feeling it may be of benefit. Haven't gone there yet, though.

Rama and Issie - I like the way you think! Must be because that's how I think, too. When I first started seeing my Naturopath he noticed that I flip flopped between sympathetic and parasympathetic dominance...and, Issie, one of the first things we started to work on was my liver. We do live in such a polluted world. I fully believe in the rain barrel effect. I think we need to do what we can to empty our barrel as much as possible. There is no question that you will feel better if you take the appropriate steps to clean yourself from the inside out and control what goes in to the best of your ability. My thought, since I've been "ill," is that I will do whatever I can do - control what I can control - exercise, detox, change my diet, stop ignoring my food allergies, etc...- and then see what's left over. I figure there are things I can do to lessen the load on my body so that it can deal with whatever it has to deal with - whatever is causing the POTS. So far the results are good. Just a note - I don't have any of the genetic or autoimmune issues in the background like many of you do. I'm a pretty easy case. I'm sorry for what others have to deal with. Ok, wow, what a ramble...I digress....

I also over sweat. When I had my sweat test they said I sweat more than 3x the normal amount. It seems to come and go, though, in severity, but I haven't found a pattern. It can be a nuisance. I feel like I go through clothes way too quick. I hate buying "nice" clothes because I know they're going to get ruined. I have bought underarm sheilds to help protect my good clothing, and they are a good alternative. This body doesn't need anymore toxins, like aluminum, in it so I don't use those "special" deoderants. I just keep trying to accept it and stop being self-conscious about it....

Went to see a GI who read my chart, listened to what I said, did a poor man's tilt (i didn't know why she was doing it at the time) and then told me she thought I had POTS and needed to see a specialist. Thankfully this was pretty early on in my adventure...

Have you tried the "meet others" option on the Dinet Website? It could be a nice resource for you.

Yes, it is distressing to see what man is doing to man - around the world. However, I'm a student of the Bible and if you believe in the prophecies found in it - it talks of these things happening in the time period that we're living at 2 Timothy 3:1-5. But, the Bible also speaks of a time when these things will be no more in Revelation 21:4. I'm looking forward to that day! Issie I agree that it is really hard to see what has happened to mankind and what we've done to this planet! I also look forward to the time when we live in peace and harmony on this earth, with each other and with the planet, as was originally intended! Then we won't have any reason for anger, or fear, or illness! And then we'll get to see what our personalities are like unmarred by the injustice that surrounds us now...

Glad to hear that you're feeling better! Curious to see how long the effects last - hoping good and long for you. Inflammation - the silent killer. I hope you/they are able to find out the autoimmine component soon. Keep us updated!

Are you girls talking about just plain saline fluids? My doc has a standing order for me for IV therapy whenever I want it, but it's saline + magnesium. Have been considering it since I've been in a hole lately...

Man, I feel jipped! No relaxing side effect here - I could totally go for that!

Yes, I recently had mine checked.

My functional medicine doctor told me he uses magnesium IV therapy for his dysautonomia patients with excellent sucess (esp when they are in a really bad "hole"). I've read much on the benefits of magnesium, I don't know why I'm not taking it?? hehehe

Yes, this is a definate for me and it's definately related to blood sugar. I used to think that it had to be a significant drop in order to produce symptoms. That's not true. I get more symptomatic even from a sight change - when it's just starting to drop. Keeping my blood sugars even makes a huge difference for me.

just a note...it's not uncommon to get more symptomatic after starting a probiotic. The die-off from bad bacteria can wreak havoc. Sometimes you have to go through the "unpleasants" to get real results...it can actually be an indication that you're doing the right thing for your body.

When I started taking Mestinon a year and a half ago I did a search on the forum about the med. From what I remember there were those who said that the side effects did resolve, but for others they did not and they had to stop taking. I hope for you that the side effects lessen because it sounds like you're getting some really nice effects from this med. I remember one thing that was also recommended was to start "low and slow" with dosing...perhaps that would help.

I agree that it's probably related to something other than POTS. Thyroid, low iron, various other "deficiencies", hormones, stress...all these things can lead to increased hair loss. I think we all have multiple things going on and it's so hard to figure out what symptoms are from what, or how to help them. I hope you get some things figured out soon.

Glad to hear that it seems to be helping. There are many that are sensative to gluten (if not allergic) and find some relief keeping it out of their diet. Yay for you. Keep it up. There have been a number of posts on here about it so feel free to do a search for "gluten" and enjoy the reading.

I see a Naturopath. The principle behind naturopathy is that the body has the ability to heal itself when given the proper support. An ND doesn't treat your specific diagnosis. They look at how the body as a whole is dealing with the disease process and give support where needed and find things that are adding to or even causing the process. A kind of "heal you from the inside out" approach. I definately agree that there are many things that can contribute and make our symptoms worse. When I first decided to go to an ND it was not in hopes of a "cure," it was simply to "lighten the load" on my body so it could deal with whatever it was dealing with better. I'm made some really good progress in acheivig that goal and have learned a lot about my body. You do need to be careful when choosing an ND. Not all are created equal. There are some real hokey, whacky people out there, and of course some greedy ones too. It's good to always check out their education background, make sure they graduated from an accredited 4 yr college for naturopathic medicine. Snoop around online to see what you can find out about them. Sorry, I live in the North East, so I can't help you there in FL. I hope you find what you are looking for and have some positive experiences. Please feel free to PM me with any questions...