little_blue_jay

Thanks for getting back to me katybug! I can't believe it but I'm still awake at 9:10 here Yes I am interested in the neurofeedback, thanks! I'm in Southern Ontario. Didn't know it was a computer program only available through a specialist - no wonder I couldn't find any details when I googled it! That's interesting about the click, but how does the click make your brain calm itself? I have no Epsom salts at the time, I've tried this in the past though, both in a regular bath and in a concentrated footbath and sadly it didn't do much for me. I do take pretty high doses of magnesium citrate orally (for constipation) Took about 900 mg last night so it doesn't seem to have an effect on falling asleep for me. I found someone's blog page on her struggle with POTS and bad insomnia so that makes me feel much better that that's what's wrong and not FFI! She mentions that she 'went weeks without hardly any sleep at all' And I'm freaking out after 32 hours! Still, I just wanna sleeeeeeeeeppp

Oh yes, I have this too. I told my doctor all about it, he didn't seem too surprised and looked like he believed me, but I never got much explanation. When I'm having a 'flare up' it doesn't matter what I eat - I told my doctor that my heart would race part way through a small meal of green salad with tomatoes, and some olive oil with some cut up grilled chicken - no spices, no MSG, nothing at all that would make someone react. Sometimes the tachycardia would start right after I was done eating, but when it is really bad it would start about halfway through a meal, and these were small meals to begin with (I can't do large meals at all!) It is very bizarre, and I hate this symptom, because I like to eat, and want to enjoy my food goshdarnit

*Usually* my worst symptom is tachycardia, but at the moment that's actually not bad, right now my worst symptoms is INSOMNIA ! I HAVE BEEN AWAKE FOR 24+ HRS AND TRYING NOT TO FREAK OUT

OMG Katybug thank you so much for replying so fast! I'm so relieved to hear someone else has had this, this bad! THIS ***** EH I forgot to mention that I can't even go see my doctor about this as he's away the whole month of August, his wife is having a baby, there's a walk-in clinic I can use but they always just say 'follow up with your doctor', and I don't even know if they would be able to order such a specialized test as the one for FFI, just to put my mind at ease!!!! Yeah I got up to eat around 1 pm and had a cuppa tea with it, as I find I can drink warm tea before bed and the caffeine doesn't keep me up, I might have to get up and pee with tea but not the caffeine itself per se, but even a small meal with protein and tea didn't help. I JUST WANNA GO TO SLEEP Tell me more about this neurofeedback, what is it that you do? I tried to slow my breathing but it feels like it doesn't wanna slow down

Ok I'm starting to freak out that I have something called FFI Fatal Familial Insomnia -- I know this is super rare but I am scared, this is not normal for me to not have slept in over 24 hours! I woke up yesterday around 12:30 noonhour, didn't do much all day, laid in the sun couple hours, felt very sleepy (but not tired enough to sleep, I find for myself there's a big difference between tired & sleepy) by around 7 pm. Went to bed fairly early but put a movie on as this usually helps me nod off but I picked a noisy movie with too much shouting, and felt several times that I was nearly asleep and it would wake me up. My cat was on my belly so didn't want to get up but finally I did. Also my hamster's wheel was very noisy, had to get up several times to adjust it and finally just took it out altogether cuz I was getting frustrated) I feel maybe like I just missed my 'window of opportunity' to fall asleep then, and now I'm just so overtired that I can't sleep? I have chewable melatonin tablets 1.5mg but I know I'm so sensitive to all kinds of meds that I used to only take a quarter of one of those, till I started to feel like it was depressing my breathing just at the onset of sleep, so I had stopped taking them. Out of desperation a couple of hours ago I chewed a half of a tablet, it made my heart race and a groggy feeling so I laid down, but I'm still not asleep. Please someone just reassure me that someone else out there has had bad insomnia as bad as this cuz I'm freaking out that I have this FFI!!!! In case someone is wondering, on my mother's side nobody has ever had this, and on my father's side I have no idea, and I'm not on good terms with him and don't want to phone him just to ask him this, we've spoken years ago but who knows if he would have mentioned something like this anyway, he's kind of odd and I don't like him (I have reasons, can't go into now ) It is now 5 pm here and I'm still up! HELP ME

cctalk & katybug, you guys are so lucky to have ridden as much as you have and/or spend so much time with horses like you do! *jealous* I love horses, I would love to have one (or two as they like company!) some day! A friend drives me out to the country to feed some horses carrots and I just love it when I come home with my hands smelling like horse Somebody (can't remember who) said "the outside of a horse is good for the inside of a man" (or woman!) Sorry to hijack! Carry on!

Does it help with tachycardia and/or shortness of breath? I'd be interested in those links you mentioned katybug (whenever, of course! no rush )

I'm beginning to think so too. I am during a certain time of the month right now and it's weird because usually I'm nonstop thirsty during my period! This time, nothing. Bizarre. Also during this flare-up I'm having (lovely that it coincides with my period ) I'm getting this thing where after a few bites of food the tachycardia starts. I have rotated my food for several days, not eating the same thing twice a day, and it still happens. I've concluded it's not what I'm eating, it's the fact that I'm eating at all. Or sometimes I'll barely eat a few bites and I'll feel slightly nauseated. I'm getting fed up! Pun intended!

Yes darn it that's exactly what happened to me a couple of times lately! I noticed my pee was too dark yellow for my liking so even though I wasn't thirsty I made myself drink a full bottle of water immediately and started on a second one within 5 minutes as the shade of my pee was a bit alarming (to me, I get freaked out easily by such things!) and almost immediately I felt nauseated! I was thinking 'what the heck is going on here'.... my pee tells me I'm dehydrated, I drink water and I feel slightly sick???! I did not 'chug' the water, just drank it within about a 3 minute period. I thought it very odd! Glad to see I'm not the only one! Any ideas as to why our bodies would not signal the thirst drive instead of just letting dehydration set in? How do they even test for blood volume anyway? I really should ask my doctor about this!

I have the same feeling after using elevators. Even at my doctor's office ironically, he's on the 4th floor! (I do have something called peripheral vestibulopathy though, it affects balance) My cure: I have to sit still & quiet for a while and just not move. My equilibrium restores itself after a bit.

Very sensitive to smells here too! I've just moved into a nice place where I'm renting a room and my landlady lives here too and she is super nice but a couple of times she's put on this super strong perfume and I've just had to retreat to my room with the door shut. Or go sit outside. After just a few whiffs I just have to go somewhere with fresh air and take a few deeeeeep lungfuls of fresh air or else I feel a headache coming on and actually start to feel disoriented, I know it sounds crazy but it's true!

Yeah I know it's hard to cut out the gluten - sometimes I have cravings for one of those fresh baked French breads at the supermarket as they just smell so **** good I could eat half of one slathered in butter LOL but I really really started to notice that after eating wheat (even just a few crackers!) that almost automatically my heart would start to race and I'd get super thirsty! I sometimes splurge on one of those gluten free breads but they really are high in carbs so I haven't bought one in a while, trying to lose weight! The brain fog for me I find is just so much worse when I either haven't slept enough the night before or I've over-done it the day before, as in, I had a relatively good day and did too much like cleaning or laundry or walked too much and overtaxed myself, then the next day or sometimes that same day the fatigue and brain fog sets in and I know I have to take it easy the next couple of days! Is your new job stressful? Even starting a new job is stressful sometimes, that could be doing it. You say it happens at work and ever since you started working there - I hope it's not one of those cases where you're reacting to something in the environment there like chemicals in the carpeting or something? That's good that you're able to work though. I haven't worked for just about a year now. Highly doubt I'd be able to work again.

Hey all I've been having a flare-up for a good couple of weeks now. Two weeks ago today it was so bad with the racing heart and shortness of breath that I went to the ER (again - been there a couple times over the last couple years with this) and they took blood and urine and it came back that I was slightly dehydrated and my potassium was a bit low. Not extremely low potassium as I was able to follow up with my doctor only a few days later (thanks to someone who cancelled or else its very difficult to get in to see him!) and he said that my potassium was only 1 hundredth of a point out of range (range is like 3.5 to something and I was at 3.4) so he said that wasn't the cause of all my symptoms. (I've since bought "No Salt" and been sprinkling it on every meal!) They also said it got flagged on my lab work that my ketones were high (I do eat low carb, my doctor told me to eat this way) Is it possible that as my body was trying to get rid of excess ketones that that made me dehydrated? And potassium gets caught in the crossfire? My doctor was more concerned about my being slightly dehydrated, and that really took me by surprise too as I *thought* I drink enough water throughout the day. I do try to not wait till I feel thirsty to drink but try to have a bottle of water near me and just keep taking swigs every so often. I do drink perhaps one or two cups of tea but not strong, I take the tea bag out, and consciously try to balance it with a cup of plain water afterwards. Now ever since then I've been paying attention to my pee which I've noticed sometimes is too dark yellow which I know means dehydration, but it's odd that I have so little thirst drive, I've never had to pay attention to my pee before but I don't want to be dehydrated again either as I know that's bad! When I wake up my pee is kinda too dark for my liking but I can't drink alot before bed or it'll just make me get up to pee before I can sleep. Even though it's June it hasn't been really hot here lately either (S. Ontario) so it's not like I'm sweating buckets and not replacing it! In fact I've been finding it downright cool, wearing sweaters in the evening, etc. but then again when I'm POTSy my hands are perpetually cold! I thought with POTS you're supposed to be excessively thirsty, says so on our symptom list! I even use nice pink sea salt on my food. Why should my thirst drive be lessened?? Anyone else find this odd? Anyone else ever gone to the ER and been told they were dehydrated (but not from something obvious like diarrhea)?

So glad you're doing better Angie! I'm like you, I can tell from when I wake up each day whether I'll have a good day or a bad day. The last few days when I wake up, just the act of turning over in bed in preparation for getting up makes my heart speed up too much Although it's occurring to me that this might be my anemia coming back instead of POTS. I'll try to go to the clinic Saturday morning and get this checked out. Eating liver in the meantime in case I'm on the right track finally. I investigated used recumbent bikes on kijiji for my hometown and there was nothing under $200! So that idea went out the window (I'm only on welfare) Plus I'm moving soon and it'll just be a room so wouldn't likely have space for one anyway

Thanks for the replies everyone! I spent $16 on a cab ride to the walk-in clinic today, only to be turned away because they were just packed busy... she said they couldn't take one more person. I was only there an hour and a half after the clinic started! Fridays there's no clinic, so now it's either go to the ER or wait till Saturday morning clinic. It occurred to me that possibly this isn't POTS but my anemia coming back. The symptoms are just so similar for both! And I've been taking lactoferrin which I've done extensive reading on and is supposed to sequester iron and shuttle it to where it's supposed to go in the body. But it occurred to me that possibly it's not helping me at all but depleting my iron?? It's not supposed to, buttttttt........? I've had paradoxical reactions to pharmaceutical drugs in the past. I only had 4 iron pills left & I've taken them all today so somehow tomorrow I have to find a way to get somewhere to buy some more. (This might gross some people out) I also took some frozen lamb liver & grated it and made a raw liver smoothie with it, drank about 4 glasses of it today. Desperate times call for desperate measures! I suppose it would take a few days for me to feel any difference with that (if this is anemia) On the Weston Price page it says it takes half a pound of liver for about 5 days to notice a difference. I'm just so tired of this pounding heartbeat and persistent SoB. It's fatiguing. I slept till 3:30 this afternoon, did nothing all day except a cab ride & a bus ride, and I'm exhausted.

Angie, wondering how you are doing now? Still flaring up or are you better? Hopefully it's subsided! I'm flaring real bad myself right now, for the past whole week. Never had one last this long. Freaked out. Coming on here and reading others' stories helps. As Red Green says, "I'm pullin' for ya, we're all in this together."

Hey all - haven't been on here in a while but I've been having the worst flare-up for the last week. I'm in S. Ontario - at first I thought it was low barometric pressure but it hasn't been that low really. This has been ongoing for a good week now. I don't think I've had a POTS flare-up last this long before and I'm starting to get freaked out. I have been basically flat on my back doing nothing. Soon as I move around my heart is just thumping in my chest so bad. The kicker is about 2 weeks ago I was feeling fine enough that I was able to pull slash carry a garbage bag of clothes for donation quite a ways away, about 20 min. walk, and walk back home, and I was just fine, and it was a hotter, muggier day than what it's been the last week here. When I feel ok I am able to go for a walk but this past week has been just awful for me. I keep coming on dinet and reading the symptoms list to reassure myself but the tachycardia and shortness of breath is scary. (I'm not actually diagnosed POTS as mine comes & goes.) I feel tremulous, shaky in my hands, my feet and hands are ice cold most of the time, I could go on. I have to fight hyperventilating as the SoB is so bad. I might go to the walk-in clinic tomorrow afternoon but I know what'll happen - they'll take my BP & pulse lying down and maybe standing and probably won't be that bad. It's happened before. It's moving around that gets crazy. All my time lying on the couch has me thinking of all kinds of wild conjectures of possible reasons for this to be so bad: (don't laugh!) weather, cosmic misalignment, ley lines, some farmer around here spraying some chemical, chemtrails..! I've had flare-ups before but this one just won't go the **** away! Mine usually last 3 to 4 days. Anyone else particularly in my region having a bad flare-up recently?

Agreed! I found a great quote a few days ago: (paraphrasing) A good laugh and a long sleep are the two best cures for anything. Knowing you're not alone really helps alot too! Especially when I am flaring like I am now, reading others' stories of how they are feeling the same crummy symptoms is comforting (in a twisted way, LOL you know what I mean!)

It really does help! Like you said misery does love company! I remember how happy & relieved I was when I first found this forum and read so many other stories just like mine! Not happy that so many others have this too, just happy that I wasn't the only one nor was I going crazy! I've come on here late at night when I'm tachy and short of breath and trying not to panic about it, and I read a few threads and it really helps, to know there are others out there who are feeling the same crummy symptoms! Yeah I'm not known to pass out either *knocks on wood too* but I know I've come close - I had times standing at work when my heart rate was super high and my vision would start to go gray and blurry - I had to have been pretty close! That's what I felt like the last day I tried to work. That was it for that place for me (was a coffee shop, no sit-down jobs there!) Oh yes I feel much worse when over-exhausted! And during a flare-up is when I need some good sleep, and that's when my sleep goes all haywire! It's a vicious circle! Have you had a sleep study to see if you have sleep apnea? I've tried twice to do a sleep study but failed to sleep as I have a hard time sleeping in a strange environment, plus the room was super cold and I wasn't allowed to use the heater and the blankie they brought me didn't help much. The second time the room was warmer (was summer) but I could hear the guy across the hall blowing his nose all night I'm being sent for a third attempt to a different sleep lab in November. I don't think I have sleep apnea, but I keep complaining to my doctor that my sleep isn't refreshing. Sleep apnea sounds terrifying - I'd be afraid to fall asleep, and that's an awful feeling to have. Once I was on an antibiotic that after 1 pill made me feel like I had stopped breathing (I had laid down for a nap) and after I got it switched I looked up the first one and found several anecdotes of people who had had the exact same reaction as I had! The pharmacist hadn't warned me Even after I switched to a safer antibiotic (I had been on it previously so knew I could take it) I was petrified to fall asleep that night

Me & alcohol don't mix well at all

Oh I know how it ticks me off too when people say "they know how I feel", oh "no you don't!" I feel like saying! The worst is when you try to explain that the more you try to do, the faster your heart rate gets, and they're like "oh you're just unfit, you gotta start exercising more!" I can relate to just about everything you said (except for the kids part, I don't have kids!) I've been having a bad flare too, the last couple weeks. I have a roommate but he's starting a business and he's barely ever here and like you I hate feeling crummy when you're by yourself (well you're not technically by yourself as you have kids, but you know what I mean, no other adults around! I always am petrified that I'll faint when home alone and nobody around to help!) My fatigue has been so bad lately too! I absolutely hate it! I know my sleep schedule is totally buggered up right now, I can't seem to fix it even by staying up all night and all day, it only makes me absolutely exhausted but my circadian rhythm just won't straighten out. I sleep during the day and up all night and I hate it. And if I'm not in a flare-up I sleep like 10 hours but still don't feel rested! But lately my sleep is so broken up, I toss & turn, it is very frustrating! I had to get up early today for a doctor's appointment, and I have to wake up even earlier tomorrow for a house inspection (yearly thing from the place we rent from) The grape-sized knot: sounds like a swollen lymph node perhaps? I know we have lymph nodes all over our neck, jawlines, etc. Is there a corresponding one on the opposite side?

Oh wow, this was me last night! I was overwound but exhausted and couldn't sleep till I was super super exhausted and even then my heart rate had a hard time slowing down. Or my heart rate slowed down but felt like my heart was pounding too hard - it was scary! I was awake all night with it. A couple of times when the tachycardia got real bad I nearly phoned for an ambulance I do feel like a wreck today too! Like I just have not slept enough - and lately my sleep schedule has been so wacko, I sleep all day and up all night no matter my efforts to try to fix it. I have bad reactions to meds too. Two nights ago I tried to reset my sleep schedule by taking one antihistamine (the drowsy kind). It made my brain super sleepy but made my heart rate speed up so that I was unable to fall asleep any earlier than I would have. My naturopath said to try motherwort as it is a heart tonic and is good for slowing the heart rate down. I was taking it in cups of water, sipping it through the night. During the height of the 'attack' as I call it, nothing was helping, not even slow deep breathing. Eventually I was able to fall asleep well after daylight but I don't know if that was the motherwort finally kicking in or just sheer exhaustion! So I do know what you're all talking about! If anyone figures out a fix, let us know!

Is the calcium channel blocker helping with this?

Seconded! Although this is a very old poll so maybe not possible... I tried to vote but because I'm not working anymore I tried to skip the middle question but it wouldn't let me.. I used to be able to work reduced hours but now cannot work at all. I worked at a coffee shop which is all standing I took many sick leaves over the years - at first it was just CFS - but now with the POTS I just can't do it anymore.

How are you doing, sleepy lady? I know that during that "time of the month" my symptoms get way worse too I'm just getting over a "period flare" - I was super tachy, wasn't bedbound but was pretty much housebound, soon as I started doing any housework the shortness of breath and tachy would take over. Couple of times I had to do my dishes in stages! Coming up the stairs was awful.. I'd have to go slow and stop at the top, gasping, like I'm a little 103 year old woman! So sorry to read what you are going through, sleepy lady! You must have someone at home who is helping to care for you when you cannot get out of bed?