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I find it difficult to absorb protein from meat and your digestion sounds worse than mine - so would definitely recommend protein drinks where you can absorb it more quickly. I also find lightly steaming vegies is the best way to cook them for maximum absorption.

Same! Small meals, low GI, avoid refined sugar as much as possible, protein with every meal if possible. Leafy greens give me lots of energy and I seem to sleep better. I limit myself to just one coffee in the morning, then stick to green tea.

Thanks guys. The headaches and nausea have been improving steadily so hopefully within a couple of weeks it will all be better. It's kind of weird, I've been getting some dizziness a couple of hours after taking it but that could just be low blood sugar/weather warming up..

Hey guys,

I've just started taking the mini pill and have headache, nausea and - but I'm not sure if I'm imagining it - it feels like anxiety/worse POTS symptoms. Has anyone started taking the pill after getting sick? Do you remember how long the side effects lasted? I tried taking the combination pill recently but got a migraine so I stopped.

Thanks

I tried taking choline bitartrate, but felt really rotten. Apparently it's supposed to be suited for people with a symptathetic nervous system imbalance, unfortunately I reacted in the opposite way to the way you're supposed to.. felt really jumpy and jittery, couldn't sleep, felt off balance etc. I haven't been tested for acetylcholine levels though. See how you go!

Not sure about the patch, but I tried starting the combined pill again yesterday and felt AWFUL. Nausea and my blood pressure was going crazy. High, low, then sustained high with a killer headache and slightly blurred vision. I think I'll talk to the doctor about trying progesterone only.. so yes, I think any sudden change in your hormone levels could be behind it. Have you had the patch for long?

Hi guys

I'm heading off to the doctor this week to talk about contraception options - one of which being the pill. Does your body have a preference for either the combined or progestin only formulations?

Cheers

Thanks guys - it's due to arrive in the mail today or tomorrow so I should know pretty quickly if it helps. If it does, you should be able to hear me yelling with excitement (and energy!) from where ever you are

Hi guys,

My naturopath has recommended that I give 5 Htp a go to help with a recent bout of terrible sleep patterns. Has anyone had any success with this? For the past month or so I've been either waking up at 4:30am and not being able to get back to sleep, or waking up at 3 and not getting back to sleep until 5:30 or 6am. Needless to say, my OI symptoms are starting to flare up again and I'm constantly exhausted and can't eat without feeling sick..... I was doing pretty well until now and it's hit at a time when there are all of these end of year functions. I feel bad not going or leaving these functions early, but I just feel awful being so sleep deprived and stuck in these stuffy rooms with alcohol and all the fatty food....

I feel awful when I take fish oil too. My theory is that it lowers my BP, and then my sympathetic nervous system decides to bring it back up, but in the process goes into overdrive and my body has a hissy fit. Heart palpitations, high BP, gastro issues.....the usual fun stuff.

Maybe it would help to gradually increase the dosage but eating more oily fish, then one tablet, then increase to two etc?

She said it would support my parasympathetic NS and should help to balance out some of the nervous system issues. I'll let you know how it goes! Not sure it would suit everyone, but I tend towards adrenergic so we'll see. I'm cautiously optimistic The other comments she made was that my system is acidic and my liver is quite compromised (have apparently been exposed to quite a few toxins at some point).

Do you like eggs or tofu? They're some other pretty good options for protein.

Hey guys,

I recently went off to a naturopath (who had been recommended to me) and she actually listened to what I had to say - amazing!! So, she's recommended that I take these supplements - one is mainly choline bitartrate and the other is amino acids + choline bitartrate. Has anyone tried this stuff and had any luck with it??

I do the exact same thing. I'm up between 5-5:30 almost every morning. If I'm awake before 5, I make myself stay in bed until at least 5:15 or so. What time do you go to bed at night? Any new meds?

I'm usually asleep by 11pm or so. I was doing really well until a couple of weeks ago - would wake up at 6 or 6:30 which was AWESOME. I'm not on any meds (but do take magnesium). My housemate just got back from o/s so I'm thinking it might be my body getting used to someone else being in the house again?? Either that or the cold weather....

For the past couple of weeks I've been waking up at 4:30-5 every morning and it's messing with my POTS like crazy. I miss sleep that feels like sleep!!!! I'm pretty sure it's an adrenaline surge doing it.

Does anyone have any tricks to deal with this type of thing?

Hi Jana,

I'm sorry to hear you have complex regional pain syndrome. My aunt's mum has it - not sure about what drugs she takes, but I know she's found swimming to be quite effective in keeping her joints mobile etc. It's mainly her feet that trouble her.

Will do, thanks Dianne. I've never spoken (face-to-face I mean) to anyone with pots/dysautonomia!!!! Imagine meeting someone and not having to feel like a dill and jiggle around on your feet until you get the chance to sit down..........

Hey blue,

Hello from Armidale! There's a group on facebook for Australian POTSies which you might like to check out. It's small, but gradually growing....

It's interesting you say that firewatcher - I was talking to a woman the other day and she was saying that there's a correlation between kids who experience some type of stress pre-18months or so and fear of heights. What that fear relates to though is a reflex that hasn't been switched off due to that stress during development. She said that people who are afraid of heights, jump when they're startled and kind of go in on themselves (like shoulders go forward, towards foetal position etc) haven't had that reflex turned off. She does a series of exercises with kids to reverse this - essentially they get used to being startled/scared. I haven't looked into it any further, but thought it was interesting

This was on Doc Martin the other day!! I can't remember what it was though, sorry. I think it may have been UV light reacting with a protein in his wee.

I recently moved and had to go and get a new license and had the question - have you ever suffered from giddiness/fainting? There was a list of stuff and you were supposed to get a doctor's certificate saying it was ok. The thing is though, I won't drive if I feel really bad and if I'm sitting down, I'm usually pretty good. IMO it's the brain fog and fatigue and lack of concentration that can cause an issue.

Hi Tammy, sorry to hear you're feeling like this! Have you tried sticking your head over a sink and inhaling eucalyptus oil/steam? I find that helps relieve congestion for a little while at least. Also, phenergan seems to be able to help with that plus send you to sleep at night without effecting heart rate.

Hope you're feeling better soon

Has anyone heard anything about ylang ylang? That's another oil that sounds like it should help some of us - supposed to help stop tachycardia, high BP and balance adrenals.

Ditto. I too feel much better mid to late cycle. Unfortunately, it's not mid-late at the moment!!

Same here, we never ate much processed food and Mum never cooked with salt. I grew up thinking that salt was really bad for you

Do you think it has anything to do with working the night shift? My mum (a nurse) has IBS and she swears it's from her body clock being forced out of whack so frequently. My first flare up with dysauto came after a feral stint of 12hr night shifts and I've always thought that was exacerbated by my cortisol and adrenaline secretions being stuffed up. I'm not in the medical field - BUT have been exposed to numerous chemicals.