westernmass

Spinner- and do you feel better? I have already eliminated most processes foods but am waiting to see my dr before eliminating the foods on my list. Gluten and dairy are on that lost so very curious about those. I noticed a while ago caffeine/coffee made me worse (same w alcohol) so I avoid those already as well.

Interesting insight about the protein- I hadn't thought of it like that. A naturopath ordered the bloodwork, and I will see him again in November to talk about results. I am hesitant to trust him fully for some reason- I also hate having to wait this long to see a dr after getting results back. In the meantime I seem pcp next Tuesday. Endoscopy... That sounds terrible. *shudder*... Is that the typical way celiac is diagnosed? I have been having ibs symptOms- honestly, for years, but definitely worse (esp nausea and bloating) since I got sick with pots.

Same. Used to be a very quick walker and I didn't notice on my own but my boyfriend always points out that I'm lagging behind these days.

Thank you everyone! Doozly- thanks for such an in depth reply. I will look into everything you said and def. bring it up with my doc. In the meantime I will continue eating gluten et al so as not to mess up any testing that may happen next week. After that I will follow the advise to start eliminating things according to their rank on the blood work. I do already eat only organic food (except at restaurants when you can't be sure) and a generally clean diet. Probably too heavy on refined wheat stuff- bread and pasta. *sigh* thanks again for your help. Any other experiences/insight are greatly welcomed. Once again this forum is one of the only outlets I have for dealing with this crazy condition.

Thank you all for the responses and support. No I have not had triptase tested (what's that?) nor been tested for mastocytosis (is this mast cell/mcas?). I will mention both to Doc next week. I wonder why allergies would appear or worsen due to dysautonomia? Anyone know how reliable the iGg blood test is? I also dont know if I should stop eating wheat/gluten NOW or continue for the next week in case my dr wants to test for celiac?

I had both tests done. Only one thing showed up on IGE (the immediate allergy) which I can't remember at the moment as it was "mild". The IGG (delayed reaction) was where all these popped up. You are right, they do rank them. Wheat, gluten, and eggs and garlic were the worst offenders. Things are ranked Neg, 1,2,3,4. They recommend you stop ratings 3s and 4s right away. The test of my list are the 3s. How reliable are these tests? I have an appt in two weeks with my primary doctor to see what he thinks. I will do anything I need I to get healthy/healthier, but this will be an entire diet overhaul. Thanks so much for responding. I've been feeling alone lately

I am similar to Naomi. I can feel all of these in one day! Or have days of negotiating days of anger days of grief.

I feel your pain on that! I have had to wait MONTHS for Dr's to get back to me after taking various tests, and have gone through the 3-week trial phase of meds before as well. Keep your chin up, and hope you feel better soon or at least get the right med soon

Hi All, I am seriously bummin'! I just got results back from my first round of allergy testing. Some background: I wanted to be tested for food allergies because I've noticed over the past year I've developed allergies for the first time in my life. Suddenly I have seasonal allergies, and developing chemical sensitivities. Candles give me headaches; I can't use any of my perfumes anymore because they make my skin breakout. When I got pots this spring, I read it's important to treat underlying allergies. I've also read a little about how gluten could be linked. I figured I'd have one or two allergies, but wasn't prepared for this! Out of 40 things I was tested for, the only thing I'm not at least slightly allergic to is chicken! The foods I'm supposed to be highly allergic to, and advised to stop eating immediately, are: eggs, cow milk/dairy, wheat, gluten, rye, peanut, almond, cashew, garlic, onion, apple, and pears. This is horrible! I don't know what to eat. Definitely feel like my body is failing me. Has anyone developed food intolerances with dysautonomia? I'm now wondering if I have celiac? Especially because in feb, the only thing I was slightly deficient in was magnesium, and now my magnesium, d, b12 are all borderline low . Anyone have experience with this? Any advice or tips? I am a garlic-and-pasta-lovin' girl and I am nervous about coping.

I would think a Dr could perform a "poor man's TTT", which is basically what you've been doing. They monitor your stats while laying, and standing, similar to a TTT. Have they done that for you?

Hi there, Metoprolol definitely did this for me. I don't know about the adrenalin surges, but it dropped my already borderline-low bp too much so that I felt weak, out of it, lightheaded, dizzy...just so much worse than not taking it. I only took it for a few days before stopping. Just my experience.

I am currently taking vitamins b12, d and magnesium. And licorice. Don't notice much effect positive or negative. My blood showed borderline low b12, d and magnesium.

Around the time I got sick my neck started hurting. Top right, at the very base of my skull. Feels like something is wrong there. I have always cracked my ankles and back - but not my neck. However since this started I often have the feeling that I need to crack my neck- sometimes it does which always feels better immediately an often it just kind of feels stuck, almost swollen but no heat or other signs of swelling. The neck pain makes it hard to sleep.

I allegedly tested negative for sjogrens. But suffer dry skin, etc.

As a child I had no problem with swings. Haven't attempted since pots.

YES I do!! I hate it! I've always had kind I dry sensitive skin but since this started my eyes and mouth and hair are drier as well.

I also don't know what kind of pots I have. Just pots dx so far. I am able to work, but only because my work has been wonderful to me. I do about 50% of what I was able to before

The title of this makes me smile And I agree!!!! STUPID POTS RUINS EVERYTHIING!! I had one of those days, too, today-- it's actually been that sort of week for me. I totally commiserate, and I'm sorry this is happening to you. And to all of us. I think it is healthy to recognize when we are feeling upset, angry, sad, frustrated, depleted, guilty, misunderstood, etc., and to accept that feeling and really let ourselves feel it. If I try to make the best of every situation all the time and paste on my happy face smile and pretend it's ok, I get even more resentful and down. If I allow myself to mope and brood a bit, I usually feel better the next day. We go through a lot, and we deal with a lot, and we are still here, and fighting, and waiting it out, and doing everything we can go get better and enjoy each day as much as possible. Hope tomorrow is better for you

My cardiologist always says he hopes I will. He seems to think if pots can spontaneously strike, it can (and should) spontaneously disappear. I am a bit doubtful but hope that's the case! I know a lot of people DO get better, either spontaneously or gradually. Here's hoping we end up being in either of those categories

I'm sorry you are struggling. I didn't do this intentionally, but three years ago got the mirena iud, which after about four months ended up totally suppressing menstruation for me. I believe this is common on mirena. I am not sure if this helps or hurts. I do think I still "cycle" but with no actual period. I have been considering trying something more normal- but no idea. Did your doctor recommend suppressing menstuation?

I would search for some yoga stretches you could do. I have some muscle soreness that I believe is due to lack of stretching and exercising like I used to. Like my back feels like I did s full hour long weight lifting session yesterday...but I haven't been to the gym in weeks, so I think it's tightening up due to under use. Totally just my personal opinion! But I ALWAYS feel better when I do some stretching in th morning and at night. Doesn't have to be vigorous or anything- just some gentle moves.

I no longer take midodrine due to side effects but it made me RAVENOUS for food!

Hello I'm 25 and was struck with a sudden onset in February 2012. I am doing about the same as I was then though my symptoms shuffle around a bit. I still work and am "functional" but at about 50% of the normal "me" I was before pots. Still looking for the underlying cause. No illness, vaccines or serious injury before the onset. Very frustrating condition we have. I am grateful to be able to still get around ok and work, though it is not easy and I struggle every day. I know many here have it much worse and are bed bound or house bound or in wheel chairs. My heart goes out to those people. It seems there are several different underlying causes and I wonder if the various subsets of pots have been linked to their onset; for example like is hyperadrenergic pots generally linked to post viral onset, etc etc.

Not sure if this has been said- Celery has lots of salt! So probably good. Spinach I like cuz it has a much lighter flavor than kale. Cucumber while delicious is a mild diuretic so maybe avoid.

I just got blood work done to figure out if I have any of the 40 most common food sensitivities. So I guess it is possible to do it that way if you are willing to shell out some money and/or don't want to do the elimination diets.