little_blue_jay

Not sure why you're not eating meat but as a tip to save standing and prepping time I love to do a roast in the slow cooker, takes 2 min to toss it in with some spices or garlic, and forget it for 6 hours, and then I can eat cold sliced roast for the next 3 or 4 days or heat up a slice for a couple min. Just about the only thing that has helped my symptoms is going on the Paleo diet, I feel better on a high meat diet with some good fats, a big salad a day and low carb veggies. Only took about a week or two to feel a difference eating this way.

I am shocked at how your parents are treating you! An ill person deserves better than that especially from their own parents. This is very upsetting to me. I'm glad you're doing a bit better. 72/62! Goodness, the lowest recorded BP I've had was 94/68 and I felt weak and tired! Can't imagine yours! You're in my thoughts, if your parents had to live one day with your symptoms they'd come out of it with understanding and empathy! Of all the people in the world your parents should take utmost care of their children, not disbelieve them when they are so obviously sick!

For those taking the H1 and H2 meds, how long do they take to leave the system? I am just wondering about giving myself a 'trial run' on either of those, but in case I can get an appointment with my allergist sooner than I think, I don't want to bugger up the test by having those in my system. How long before an appointment would I need to stop them if I start them?

It couldn't hurt to cut out gluten for a week, it's a neurotoxin.

I always look super tired, i.e. super droopy eyes despite sleeping late whenever I can. (I saw myself in a dollar store mirror on what I thought was a good day, I'd slept well, and saw my droopy eyes and thought I looked like cr*p warmed over!) Pale yes, due to the iron deficiency. I must look worse than I thought when I'm having the shortness of breath and tachycardia, a customer a few days ago (I work in a coffee shop) told me he could tell I wasn't feeling well, I was having a super bad day with the blood pooling in my feet.

No my showers are never hot either! Can't do cool either, especially when my hands are already cold half the time to begin with! I've looked at my local pharmacy for compression stockings but they were out at the time I was there. I should phone tomorrow and ask if they're back in stock and how much they cost. I do get the tingling in my feet once in a while, but compared to my other scary symptoms I wasn't too worried about it, I will be printing out a list of symptoms to bring to my doctor in a month and highlight all mine! (might need to stock up on pens LOL)

Oh. That makes sense, I had a hard time trying to figure out how antihistamines would do that. So when I see my doctor I should be asking him to test me for EDS or neuropathy? I've read up on EDS and I'm pretty sure I don't have it, I mean I can bend my fingers back a bit but I don't have the elbow bent back sign or the hyperextensible skin.. And when I get out of the shower my feet are like purplish-blue!

He's not my "partner" per se but I live with a male roommate and at the beginning of my illness he'd see me lying down after work and say stuff like 'you're tired already, you only worked 5 hours' or on my days off I'd sleep late and he'd say 'get out of bed, lazy chickie' I know he doesn't mean it to be hurtful but it was, he's older than me and he raised his kids to be hard-working, even he himself doesn't sleep enough, he's a trucker and goes out driving all night on not enough sleep and he's done it for 38 years so he automatically thinks if he can do it anyone else should be able to too. But recently with my last few flares I've had he is coming to realize that I'm not lazy and I'm not faking it... I've come home early from work and he can see that I'm just able to drag myself in the door and plop down on the sofa with my eyes at half-mast... now he says 'you've been sick for a while, it's time for your doctor to figure this out' so at least now he believes me! But still I hate remembering how many times he called me lazy, stuff like that sticks in your head. And I'm not lazy. My last job was factory work, continental shift! Ahh back in the days when I was healthy...

Glad you brought this up too. Was wondering about DAO, but like you I react negatively with worsening tachycardia to just about every supplement I've taken over the years (except my iron and vitamins)

Ok so I am pretty sure I have MCAS/POTS... but I can't wrap my head around how meds like the H1 and H2 antihistamines, if that's all one is taking, help with the blood pooling in the feet issue? Do those help that, or do you need an actual mast cell stabilizer drug for that symptom? Today at work my feet just felt so gosh-darned HEAVY. And my head so lightheaded, at one point it felt like I would faint, it felt like something was pressing down on me from above... and the dizziness. I had to force myself to move very slow for awhile (which doesn't go over too well working in a coffee shop but I can't help it! I was grateful one of my co-workers today is a nursing student, I thought if I faint she'd know how to help me!)

Oh yes! Very bad for me, this symptom! I work in a coffee shop and sometimes after I've been standing for many hours I just can't for the life of me remember what button to hit on the screen, i.e. I keep having to look at what bill I'm holding in my hand because I forget (yes in like a half second!) what button to press, or when I ask 'do you want a dessert with that' sometimes I just blurt out the wrong thing, like I've said 'have a nice day' and they're not even done ordering yet! *Super embarrassing*

Is it anything to do with "pyroluria"? (which is what I used to think I had, and might still have, who knows? Excess pyrroles..)

I'm no help, but I am following this thread because I'm wondering the same things! I'd love to hear what anyone else has to say on this topic...

I'm still having the problem today. I have to swallow like every 15-20 seconds. Is that alot? Nothing I can think of has changed, no new toothpastes or anything. In fact since mouthwashes have so much alcohol content I used some of my roommate's mouthwash to try to dry out my mouth a bit, didn't help.

Oh I see. And if for any reason you stop taking the MoM does the excessive salivation stop? I'm thinking with me it doesn't have to do with the magnesium perhaps, after all, because I've taken it for constipation many times and never recall having that 'side effect'. In fact when I first started taking it and was working out the dose I needed I'd take half a teaspoon several days in a row and never salivated like I've been doing all day today... perhaps it is just a new symptom I'm developing! Stupid POTS .... lol Oh well at least it's not as scary as the tachycardia I get!

OMG That could be it! Sorry if this is TMI but I take magnesium for constipation (had this issue my whole life) and I hadn't "gone" in a few days so last night I took a nice dose of magnesium oxide (about a heaping 2/3 teaspoonful, any less than that just doesn't have the desired effect) Well it "worked" today but I just never connected it to the salivation issue! Magnesium is my "go to" solution that I can count on working (I eat lots of veggies and drink tons of water) but have never that I can recall had the salivation issue with it! But yet you have the problem without taking the magnesium too! So who knows! Gives me something to think about though! Thanks for replying!

Being told to exercise more. I've read experiences of ATHLETES who developed POTS. Fit women who were in marathons or training for one. It's got nothing to do with not being fit!

For a long time now I've had a strange small hard-to-feel lump under my left ear behind my jawbone. I keep forgetting to ask my doctor to feel it. Isn't that where some lymph nodes are? Sorry I'm not more help. I get the eyelid twitches. So annoying. And embarrassing when it happens at work, it looks like I"m trying to wink and failing.

I did a search for this and came up with threads that were like 8 years old LOL Ever since I woke up today I've had really really excessive salivation. Did not find this as a symptom on the symptoms page here, only "excessive thirst". Been drinking lots of water to try to counter the salivation, so far not helping. Thought it was something I ate today but everything I've eaten today I've eaten before, most of it leftovers from yesterday (salad, lamb roast, cooked veggies, salad dressing, and a handful of semi-sweet chocolate chips) Thought it might be the chocolate but I had a couple handfuls a few days ago and did not have salivation afterwards.. oh and a cuppa tea but I drink tea every meal. Anyone else have this symptom? (who's not on a medication that can cause it?) I'm not on any meds. Well a B-complex and some added B6 but I take those every day, nothing new there. Does it mean I'm low in something? Salt? I'm not diagnosed with POTS yet and from what I've read I fear I have the hyperadrenergic type which a high salt diet doesn't help with. Oh I don't know if it's connected but my feet are slimy-sweaty at the same time, but yet they're cold! Bizarre, I know! Sorry if that's TMI. Any ideas are most appreciated!

I've had a Holter monitor where it showed my maximum heart rate was 187/min and I was only walking. It was summer and very hot but I made sure I was well hydrated. But still! 187! My doctor wasn't concerned but that was before my latest episode last month of extreme racing heartbeat just doing dishes and mild housework, before I'd ever heard of POTS. Bet it was near that number again!

Hello Gemma, I'm new to this board (just got approved today YAY!) and went searching for "POTS that comes and goes" and found your thread, yes this is me. Figures the day I get approved to a POTS board is when I am actually having a good day, but it's not always this way, I had a bad flareup several weeks ago, it was several weeks in the making so to speak, call me crazy but it seems like I overdid it one day by going for a long walk and I was fine, but within 2 weeks I was prostrate on the couch, could not do anything, and now it seems to be going away a bit. But I feel like I'm "on the verge" so to speak, as though if I make one wrong move and overdo things again I'll set myself up for another flareup, even just coming up the stairs from doing laundry I have to move slowly or my heart races again, but nowhere near as bad as when I was super sick last month. Now I"m reading about this mast cell disorder, is anyone here in Canada and been able to see a specialist for it? What type of specialist would you need to see? Cardiologist? Endocrinologist?

Yes, please cut out the gluten! Cut out all grains, you should feel much better. When I eat grain-free for a couple of days my bloating gets so much better, then I think 'oh a couple of pieces of toast won't hurt' and bam! I look like I'm preggers with alien twins! (I don't learn my lessons very well!) EDIT: And yes, I do find that after eating gluten my heart rate is erratic as well. Racing and skipping, it is frightening. And makes me super thirsty too! I think wheat should be left to the birds LOL