LastUnicornLady

Today, I was glad for the sweater. The room we were in was the one room where the AC worked perfectly, and I was so cold- even with a hoodie on in July.

I can most definitely relate! I also struggle with trying to decide whether orn not to wear/bring a sweater. Half the time I'm too cold, ad half the time I'm way too hot. To bring the sweater, or to not?

I was actually going to post something similar to this- especially in regards to the panic and anxiety. I had my first "real" nightmare last night since having POTS. It was pretty upsetting, but I woke up and nearly had a panic attack- even though I realized it had just been a dream. This nightmare and my reaction to it forced me out of bed several hours earlier that I would have chosen to get up, and it took me over a half an hour of prayer, Bible reading, and quiet relaxation before I was able to stop the tachycardia and panic that had set in. I have never been like that about dreams- not even when I was a young child. I can remember exactly one experience that was similar in nature, and the dream was much more upsetting than this one. I was wondering if anyone else had any reactions like this to dreams or other "upsetting" circumstances, and if the increased "fight or flight" response with POTS might come along with that.

Well... the big day has finally (almost) arrived! Tomorrow is my big appointment with the geneticist to talk about (and perhaps make a diagnosis of!) EDS. I've been waiting months for this (took longer to get the referral than the actual wait time), and as odd as it might sound to someone who doesn't have a chronic illness, I'm actually really excited for it. So, if you're a praying person, please say a prayer for me and the doctor tomorrow. The appointment isn't until the afternoon, but I also have a class from 9:30-2, so it will be a long day. If you don't pray, positive thoughts are appreciated, too. Thank you everyone!

Foggy01- I am going to the doctor tomorrow, and we will be discussing the possibility of EDS. I suspect that my shoulder was slightly out of socket (my sister has also had that happen), which would explain the shoulder and arm pain. As for everything else... I honestly don't know. SO far, it has been a one time thing. (Fingers crossed!) I'm also going to bring up the possibility of cervical instability due to some neurological symptoms I've developed, as well as head/neck pain. That might help explain the weird pain episode, or it might not. I guess we'll see.

I would just like to remind everyone that there were no illegal (or even legal!) substances involved- this was entirely my body's reaction to the extreme pain. I'm glad to know that I'm not the only who has experienced this. Katybug- that's very interesting. I had never known that... There's got to be a connection there.

Anybody else been in so much pain that they were literally high? I've been experiencing this today- most notably this evening. For the past four or five hours (though to some extent, the entire day!) I have been in pretty extreme pain, and probably some of the most difficult pain I have ever had. It seems like it's all over, and it can't decide what actually wants to hurt. First it's my shoulder, then my hand, then my entire arm, and my head and neck are in pain, and suddenly me foot hurts... And every single spot hurts at about a 9 on the pain scale. Ugh. It's like I'm in so much pain that my brain is completely overwhelmed and has shut down all kind of rational behavior. I am laughing at everything and nothing. I go from laughing to crying in two seconds. I feel "on top of the world" mentally speaking, in spite of feeling like crud physically. (It's like being hormonal... only not.) So... my question is this- have you ever been high on pain? Am I the only one this happens to?

So... I am being faced with a decision right now. I am trying to decide whether or not I want to sign up to volunteer in a position with a theater company. They are a professional company that preforms Shakespeare for our community. I have volunteered with them for the past three summers (maybe four, I can't remember right now), and I have always enjoyed it. I just started getting sick the last summer, so I didn't volunteer AS MUCH. I am planning to volunteer again this summer as long as everything works out. However! They asked me if I wanted to be their parking attendant. To clarify, the parking attendant waits in the parking lot and collects the parking fee from anyone who comes in. They get paid $25 for 2 hours of work- which, for someone with absolutely no income right now, is very intriguing. My main concern is that it involves standing in a parking lot for two hours, possibly in the heat. I am now forced to decide whether or not I will sign up to do that position once in a while. I believe I can still volunteer in less stressful positions, but they don't get paid. Do you think it's a bad idea to sign up? Or do you think I should try it out the first day and decide from there? Any input would be much appreciated, so thanks!

I'm afraid I can't tell you yet how to deal with the constant yo-yo between too hot and too cold, as I haven't figured it out myself. I do know that wearing layers is very helpful, as I can put on or take off as needed. My favorite thing to wear right now is a tank-top with a sweater, which I can take off or leave on.

Our family has a history of vasovagal syncope and easy fainting, as well as a possible (and highly likely) genetic predisposition to EDS. (Or however you want to phrase that.) My mother and maternal grandmother both are easy fainters. When their fever is too high, when they're in pain, when they're dehydrated, while giving blood... The list goes on. One of my sisters and my brother also seem to have inherited the "fainting gene", and faint with illness, pain, blood loss (even minimal), etc. My father's side is the one with the EDS factor, and I know that he faints while giving blood. However, he is not as prone to fainting as myself, my mother, and grandmother are.

That is me exactly! There is such a fine- or, as my family likes to say, "dotted line" between too hot and too cold. One minute I'll be practically fainting from overheating, and the next minute my teeth are threatening to chatter right out of my mouth! Ice-cream leaves me feeling frigid for a long time, much like it does to you. So... for being abnormal, that's pretty normal.

I will be thinking about and praying for your mom! Hopefully the tests show you what you need to know.

So glad everything went well! I will definitely be praying for a quick and smooth healing, as I know those can be rough for someone with EDS.

Just bumping this to see if anyone has insight...

Are you getting enough salt, and do you take any meds that cause you to retain salt and fluid? (Florinef is an example.) If you're not doing both of those, it's possible that all of the fluids you are taking in your body is simply dumping out again. I take salt tablets in the form of Thermo Tabs every day to boost the amount of salt intake, and I take Florinef to retain the salt and fluids better. Just a few thoughts.

Laundry is the worst for me, although vacuuming really wipes me out, too. I'm so glad to have a family that only needs me to do either every once and a while.

I have a terrible time with temperature regulation- in both directions. My family likes to say there is a "dotted line" for me between too hot and too cold. I bounce so quickly between the two, and it's hard for me to actually stay in the small zone of comfort. Especially at night. I've started waking up at 5 o'clock in the morning absolutely burning up... Still haven't figured out what to do about it. I'll have to try some of the tips suggested here!

It isn't officially confirmed yet, but my suspected cause is EDS, and I have an appointment with a geneticist in two weeks to see about that.

I don't really have anything useful to contribute to the topic, but it's interesting how often Lyme comes up on this Forum. Seems like there's got to be a pretty solid connection (in at least some cases) between Lyme and POTS/dysautonomia. It's just to frequently related to be coincidence.

It probably is POTS related, unfortunately. I don't get those exact symptoms, but I do have trouble getting to sleep. My "miracle pill" has been 6 mg of melatonin a little less than an hour before bed. It works wonders for me getting to sleep, although I still wake up too hot in the middle of the night. But at least I'm able to get to sleep before 5 in the morning, again! I would definitely give that a try.

I figured- they look cool, and they're on a very good discount. So it's worth a try! I'll let you know how they work out for me. If anything, they'll look super awesome. Mine are red- my favorite color. Might have to invest in a pair for my arms as well, since I've been having some problems with them lately, too.

So... calf sleeves? Anyone used them? I decided to purchase a pair in hopes that they will be effective but not as hot as my stockings. Has anyone else ever tried these?

OK, guys! I've had a busy several days, and haven't been able to get on here for a while. Thanks for you ladies kind responses- they've been super helpful. I have definitely figured out that it only happens when I'm looking down at something, such as when I'm reading or crocheting. Those are the times I notice it the most. I hadn't really thought about calling my doctor before (I guess because I've never done it), and I guess I will see about calling him soon. I got the tests done (after some definite procrastination on my part- the idea of scooping poop into a test tube is just not very inviting, you know!), so we may end up just waiting until I meet up with him to talk about those.

I've been diagnosed for a little less than a year, but I've had symptoms of it for nearly two years now.

Hey, everyone. I shared I while back that I had started experiencing nystagmus (or what we figured out must be nystagmus). Everyone said I ought to bring it up with my doctor, but with all of the other things we talked about at my appointment last week, I wasn't able to bring it up. Since then, it's been increasing in frequency. What I'm wondering now is if I need to make an appointment to talk about it, or if I can wait until my next scheduled appointment. We haven't gotten it scheduled, but we'll need one pretty quickly to talk about my test results when we get those in. So, would it be OK, do you think, to just wait until that appointment? Or is this something serious that needs to be looked at sooner? I mean, I'm not even sure I would be able to get in sooner- he had a long wait period last time, and it might be like that this time if I tried to get an appointment now... I also have a few other doctor I am seeing, who I might be able to talk with if needed, but I'd rather see him. Anyways, is this an emergency??? Should I be worried? Obviously you can't give medical advice, but what would you do if this was you? Have you ever experienced nystagmus?