little_blue_jay

Do you attribute that to the lansoprazole or to the diet changes you have made already?

Holy heck, that's scary! What did the sleep study docs recommend?

Figured it out myself. (Thanks, Dr. Google!) Went through the gamut of things I thought I had! Everything from Whipple's disease to mastocytosis! Count me as another who printed out POTS stuff and brought them with me to the doctor's! Hey if I don't advocate for my own health, who will? Anyway he believes me when I tell him what symptoms I have and he has warned me that there is only one doctor in all of Ontario who does the Tilt Table Test and that the wait to get in is "one to two years"! No joke! He gave me the number for that doctor's office and I haven't been able to get through (he's away till Sept. 25th) but my doctor says there's a slim chance if there's a cancellation I might be able to get seen earlier than what he said.

Basically, you take items from amazon, put them on ebay copy and paste and up the price to make a profit, minus the fees etc. Eventually you have hundreds on items listed and make an income. Its easy and I find it fun Theres a bit to it which is why theres a course and a team but its not hard to do!! And you make enough at this to live on? Or is this supplementary to Disability or welfare? Good thread, OP! I've been wondering about this topic myself!

When I'm in a flare I am perpetually cold. Last flare we were in a heat wave here and there I was on the sofa with a comforter up to my chin, hands and feet cold the whole day. Course I also had barely any appetite and hardly ate - that wouldn't help the being cold issue! My TSH is always low which means my thyroid is running just fine. Don't know if your hands just being cold would qualify as Raynaud's or do they have to be blue or whitish as well?

Bigskyfam & goschi, is it just one test for all the types? Or is it a separate test they'd have to do for each type they suspect you of having? (I've read someone can have more than 1 type?) My doctor would have to send me to a geneticist correct? I've only read a bit about testing for this and I'm confused (as usual LOL) I will ask my doctor when I go see him next week though! Wish I could print out the list on the second link but I have no printer! I'd like to get the test done, I would like to know if I'm on the right track.

Thanks, Katybug! I did see the mention of the sclera, I don't have that but I do have a high palate and very overcrowded teeth and that is mentioned on that second list! I have been on that site once or twice to scare myself by reading about the vascular type of EDS (I am pretty sure I don't have that type!) I think I will join the forum there. I've already read a few of their threads when I've googled EDS and a certain aspect like lung issues. I have this weird feeling in my lungs when I first wake up, it is like an old accordion that doesn't want to open up and I can actually hear an odd noise in my lungs when taking a first deep breath. Doesn't happen again for the rest of the day. Anyway when I started researching EDS and read about collagen and connective tissue the light began to dawn with this lung symptom. I know shortness of breath comes along with POTS but it's the odd noise of trying to expand my lungs that lead me to possible EDS connection! Plus I have a guy friend who has asked me a hundred times "why is my skin so soft"! Sorry for rambling!

http://www.oreds.org/uploads/3/1/5/0/3150381/edssymptomlist2012.pdf This is the list that mentions the crookneck thumbs. I have alot of signs on that list!

The more I read about POTS and Ehlers-Danlos often being found together (as well as Asperger's which I'm 99% sure I have) the more I think I may have EDS. The thing is, most of the criteria I keep seeing say that hypermobile joints are practically a pre-requisite for diagnosis. I kind of have the "flying bird hand sign", definitely have the "hand holding the head sign", "square shoulders sign" I'm not sure of but it appears like I do, and on another list the "farmers' or crookneck thumb sign" is mentioned which I definitely do have. Other than those I don't think I am hypermobile at all - can't touch my thumb to my forearm for example. Unfortunately the signs I have are not on the accepted Brighton criteria list. This pdf http://www.oreds.org/uploads/3/1/5/0/3150381/drbravowhentosuspect.pdf seems to be the most liberal in terms of when to suspect EDS. It states "one" of those signs "is enough to suspect JHS". It also states that " someone can have no lax joints (Beighton score of 0/9) and still have JHS if she has alteration of tissues like varicose veins.... " I have several of those listed. I see my doctor next week when I go to pick up the forms he filled out for my welfare worker and I will ask him about this. I've read of doctors though who test you for hypermobility and if you're not they say 'can't be EDS then'! Does anyone else here suspect they have EDS but without the hypermobility? Or has anyone been diagnosed with EDS but without being hypermobile?

What do they feel like? I had some PVC's on my last Holter monitor report but as far as I could tell they weren't detectable by me, and yet I had other palpitations that didn't correlate to anything on the report!

Yes, tell me about it! My HR has been lower today as well! And a couple of nights ago I experienced the fastest "cycling" (that's what I'm starting to refer to it in my head as) in and out of a mini flare. I felt it developing within the span of a few hours. I had barely enough energy to finish my dishes and have a fast bath and then I knew I had to lie down as the shortness of breath and tachy and weak legs were getting worse by the minute. I went to sleep and the next morning the flare was mostly gone! Still had head to toe weakness but the rest was better! I cannot seem to figure out any connection at all to what activities I did that day, what I ate, how much sleep I got, etc. I wish I could figure out a trigger but I am beginning to really believe it is not something I'm doing or not doing, just what my body's nervous system feels like doing to me that day!

From the same book: "In 1933 Goldblatt in England reported that human semen contains a substance that reduces blood pressure and stimulates smooth muscle. At about the same time Swedish investigator U. S. von Euler isolated a similar factor from the prostate glands of humans, monkeys, sheep, and goats (von Euler, 1937). He gave the name prostaglandin to the factor. The prostaglandins are hormones, serving as messengers to control the biochemical and physiological activity in the body. They are fat-soluble lipids. ..... There was evidence that prostaglandins are involved in the processes that cause inflammation, fever, and pain. Vitamin C has been found to act in a way similar to aspirin in inhibiting the synthesis of some prostaglandins. Horrobin, Manku, et al (1979) have pointed out that this prostaglandin (PGE1) is involved in lymphocyte function and other aspects of the immune system, in rheumatoid arthritis, in various auto-immune diseases, in multiple sclerosis, and in cancer." Quite, er, interesting!

The explanation is not specifically related to POTS but what a coincidence I was just reading about prostaglandins last night - I found a copy of "How to live Longer and feel Better" by Linus Pauling in a thrift store! (although its from 1986 so could be out of date?) "The prostaglandins are small molecules (lipids, related to fats) that play a potent, central role in the functions of the human body. Acting as hormones, they are involved in regulation of the heart beat, the flow of blood, the damage done to cells by drugs, and the responses of the immune system. Whenever any tissue is disturbed or damaged it releases prostaglandins. The prostaglandins, especially PGE2 and PGF2-alpha, are involved with other substances in producing inflammation of the tissues - redness, swelling, pain, tenderness, and heat - resulting from increased flow of blood and the movements of leucocytes and other cells and substances to the region in response to the hormones. In 1978 Horrobin reported that vitamin C inhibits the synthesis of PGE2 and PGF2-alpha, and in this way the vitamin also exerts a considerable anti-inflammatory action. He reported, however, that whereas aspirin inhibits the synthesis of PGE1, vitamin C increases the amount synthesized. The prostaglandin PGE1 is involved in the formation of lymphocytes and plays a major part in the regulation of immune responses. Accordingly the effect of vitamin C in stimulating the production of PGE1 is an additional way in which the intake of the optimum amount of vitamin C strengthens the immune system and contributes to the maintenance of better health."

Has anyone been able to contact Melanie to ask how she's doing? From what I can see she hasn't logged in here since June 24th. I hope she is ok.

Up till a few weeks ago I was able to work but now sadly cannot. (my job is all standing!) I checked Unable to Work and Able to shop/errands - I have no car but the mall is close and if I don't need to carry something heavy I can generally walk home slowly with a small amount of groceries, even if I have to sit down once or twice on the way home.

Don't know about the caffeine not helping but I know the feeling you describe about "unawakened brain"! I have days where I've told my co-workers that it feels like "my brain just can't wake up" and it'll take till late afternoon to wake up as much as I'm going to that day. Whether I'm having a flare or not my sleep just isn't refreshing. I don't dare drink coffee though, I've reacted badly to coffee (tea I can handle).

I paid $60 a few years ago for a celiac blood test and came up negative. However I know I feel crappy as **** if I eat gluten. Heart races, bloating, gurgling guts, super thirstier than usual, etc. I stick to GF 99% of the time but sometimes I weaken and crave a slice of toast & butter so bad. I don't know why I don't learn my lessons Perhaps it's gonna be a delayed reaction, lewis? (Hopefully not though! But sometimes the reaction isn't instantaneous!)

Great article! I've saved it to my Favourites for now as I'm having super bad shortness of breath and major brain fog tonight but I'll read it tomorrow when my head thinks better (hopefully!) Thanks Chaos!

Any one else's air hunger/SOB get worse according to the weather? It's very rainy & damp here and my SOB is very bad today!

Yes!! You described it perfectly! Right down to the 'almost tumble over' part! I have to consciously tell my leg 'left leg come up now'!

I don't seem to have this while walking but I have had this feeling you've all described while coming up stairs! I have actually stopped midway up some stairs and it feels as though my legs *forgot* what the pattern is and which leg should be going up to the next step! It doesn't seem to happen on the way down stairs, just up! And me being afraid of heights, anyone who knows me knows I hate having the empty space of a flight of stairs behind me going up, so when this phenomenon stops me I get scared, for a second, that it will coincide with a dizzy spell and I'll fall backwards down the steps! I've tried to describe this "legs forgetting how to come up steps" sensation to my doctor, who just looked at me funny and didn't seem at all concerned about it.

Um, ok, sorry but I gotta ask, a what? Ok I am so sorry, I tried for a couple minutes to figure it out and drew a complete blank and wouldn't you know, it dawned on me after I hit 'Post' (darn brain fog! )

Um, ok, sorry but I gotta ask, a what?

Yup, that's me too! When I do end up bringing it I feel like an idiot because I never needed it, but if I don't bring it that's the day every building I go into's got the AC cranked up and I've got goosebumps in places I can't even see LOL

Wow, you've tried all kinds of stuff. I'm not brave and/or desperate enough to try suppositories yet! Mostly I rely on spoonfuls of magnesium oxide. Let us know how your echo goes - hopefully there'll be some good news there!