ode_to_fantasy

I'm soooo sorry you have to deal with this. The first time I remember passing out I was terrified, and literally thought I was dying. Since then I've gotten used to the feeling, and it seems normal. I know it's horrifying to think of it as becoming normal, but I think the first few were probably the hardest on me emotionally. For the most part, I'll pass out at least once a day, sometimes it's as much as every ten minutes. During a good spell, it'll only be a few times a week. Every time I come to, I am crying, but I think that's just my body's reaction to it. It gets easier, I promise.

*huge hugs*

I am taking Ferrex (Nu Iron) 150mg 2x daily.

The pills aren't gigantic, they're actually pretty average sized.

Instead of having me take a mega dose, my GP just set me up to take this 2x daily for 3 months.

Hope this helps!

I have been diagnosed with Bursitis in most of my joints, and in a couple weeks, I am to be getting steroid shots to cut down on the inflammation. (They also want to do it because if the inflammation comes back, it's most likely that I have Lupus, which they have a suspicion that I have...I don't really understand this though) Anyways, I was wondering if anyone else has had cortisone steroid shots, and if they aggravated your NCS/ POTS symptoms at all.

I'm pretty paranoid about the idea of steroid shots, but my doctor assures me that it will get rid of the pain, at least for a little while.

I've been having issues (as usual ) with my vision. I'm randomly seeing everything with a sickly yellow tinge or sometimes it turns pink... but it's only sometimes. It lasts for about 5-10 minutes, then it goes back to normal. Most of the time it's normal, though my right eye has been hurting a great deal lately, and I've been getting double vision and "strobe" vision a lot (I used to have "strobe vision" all the time, but they told me it was part of my migraines). It doesn't really seem like an emergency, it's just weird and annoying. I was wondering if anyone else has experienced this??

I generally tell anyone if I'm going to be around them for any specific period of time...but I pass out constantly, so people tend to call ambulances WAAAY too much. I would probably only tell them if you thought they needed to know what to do if something worse than normal happened.

it sounds like your leg pain could be a side effect of your beta blockers. It was actually so bad on me that I had to change to another medication. I still get the leg pain, but it's no where near how horrible it was on Toprol. Your doctor should know that?

I'd say get a different doctor if possible. My cardiologist was nice and sympathetic, but he had no idea how to treat my NCS/POTS so he sent me to a neurologist after trying a few things that didn't work.

Best of luck!!

I was just prescribed 50,000 units weekly (whatever that means).

He thought I had Lupus, but ended up just having insanely low Vitamin D...

don't know too much about it though.

I've tried a lot of different medications for migraines, but the only one I've found that works is Verapamil SL. I haven't had any migraines since the first week of taking it!

I totally know the feeling, I live in Florida, and I'm only functional about 2 months out of the year.

My AC bill is INSANE. But when I walk into my freezing house, I feel almost instantly revived.

Hope you feel better.

I've been in and out of doctors SOO much the past few weeks. My medication has stopped working properly, so I've started passing out A LOT again. And I've been submitted to insane amounts of tests and xrays and such trying to determine if I have EDS or what could be wrong with me, other than what we already know. It's been insanely discouraging.

So, I was watching the Discovery Channel today (as usual), and this one woman said, "There comes a time when you have to figure out if you're a person with a disease or a diseased person."

As difficult as it seems to not be obsessed with everything that's wrong with me, I don't want to let it control me. It really encouraged me. I don't want to not let my problems be my identity.

I am stronger than this.

Just thought I'd share...

So my husband was just offered a major promotion at work (we both work at the same place), which would mean at least another 2-3 years contract (for both of us) working at this company. My problem is that we've been planning on moving away from the Florida heat as soon as the contract he's already in was up (which would be this July), because I'm soooo amazingly sick in the heat, and can barely work at all. This company is amazing, and moved me into the office (where there's AC), let me make my own hours, and are well aware of the medical problems and are very helpful, but I'm still constantly sick. So my question is...to accept or not to accept? This would be great for both of our resumes (and wallets), but if I'm sick all the time, is it worth it?

*confused*

I keep a health journal...I just started it this past month recently because I felt bad about talking about it in my regular blog (it made me feel like I was whining all the time). I find it's much easier than keeping a handwritten journal and such, but then, I'm on the computer all the time. :-P

Here's the link to my journal if you wanted to get a feel of what it's like.

I usually get this way when I'm dehydrated...and I'm usually dehydrated.

I'm 5'9, but definitely not skinny. My dr. was suprised that I had POTS.

I feel sometimes like I 'jerk' myself awake right as I am really going into deeper sleep. A lot of times it's dream-related- like I'll have jumped off a bridge, and I wake up heart pounding, etc. Anybody else have the accompanying dreams? Wonder if it's b/c I already felt like that, or if the dream contributed to it. (Chicken and the egg! )

I started taking Topamax for my migraines a few months ago, and I'd have these episodes constantly. I had the episodes before , but they were a lot worse on the Topamax. (I quit taking it shortly afterward) My Dr. told me that it was some sort of hypnogogic state. I always got really tachy and short of breath and such...maybe this is what it is?

Does the doctor know you have NCS and POTS? Calcium channel blockers are vasodilators, and they can cause syncope as a side effect. Wouldn't a CCB make your NCS and POTS much worse? Might that in turn make your migraines worse?

I was thinking that...but he's the dr. that diagnosed me with NCS, POTS and migraines. He said "it might help, it might make you worse, it's worth a try". Between him and my Cardiologist I've already tried sooo many things, but my migraines are such a huge issue that I'm willing to try it. At the first sign of anything going awry I'm going to call him and let him know... I haven't really heard any good things about this drug at all...and it kinda worries me.

I know that this has been discussed before...but I've only read about bad reactions to Calcium Channel Blockers. My dr. just prescribed Verapimil to me for my migraines, and he said it might help with my syncope as well. I'm extremely intolerant to meds apparently...they've tried so many on me that I feel like a human guinea pig. He said he doesn't really want to try this on me, but it's better than Depakote and some others, and nothing else has worked so far...so this is the next on the list for me to try, and he's putting me on the lowest dose possible.

My question...has Verapamil helped anyone???

I'm actually out of the wheelchair now that it's colder out. I am extremely heat intolerant.

It's wierd how it's so opposite with people...

I call it "strobe vision" I've had it constantly for the past 6 months or so. The Drs told me they think it's part of my migraines. But I notice it more when I'm laying down or it's dark. I've had trouble sleeping because of the flashing. I think my husband thought I was going insane.

My mom just used to think I was being a brat when I would complain about noise.

But I was told it was part of my migraines (I'm extremely light/sound sensitive).

It does seem to come with really bad POTSy episodes though.

I started taking Topamax a week ago for my migraines. So far they haven't helped my migraines at all(which I'm not suprised, it's only been a week), and they've actually made them worse. But I've almost completely stopped passing out since taking it. I don't understand it. Believe me, I'm not complaining! It's just strange! Has anyone else heard of anything like this? I normally pass out whenever I stand up, move my head too much, or pretty much whenever my body feels like it (all the time), so this is a really nice change!

Any thoughts?

1. Sara

2. 23

3. POTS, NCS, IBS, Neuropathy

4. 21 (have had since 14)

5. Gainesville, Florida

6. I get really hot/flushed, can't think, bp goes down, I pass out, throw up, get chest pain, body pain, dehydrated, weak, extreme vertigo, diahrea, migranes, hallucinations, breathing problems.

7. When I'm doing well I can walk for about 5 minutes, I can get up and only grey-out. Migranes less severe. Almost always better in cooler weather.

8. Midodrine, Toprol XL, Celexa, Prozac, Imitrex

9. Meclizine, Phinergan

hi guys,

Has anyone got any ideas for how to get rid of really bad vertigo? i keep falling over and it's kind of like pre syncopal, like i can't stop it happening and i feel like i'm blacking out.

i was making my christmas cake with my boyfriend yesterday and i bent down to look i the oven and everything just started spinning and i fell backwards but i couldn't get up everything was going black. So now i have a bruised bum and a sore head where i hit the wall!

I don't know if i have any kind of infection that's started this off, but i can't go on like this, i've had it for about three weeks and it's getting worse. any ideas for how to get rid of it will b really appreciated, i've just started at a training school designed to getsick people back to work and it will be my second week this week, providing i can get there without falling over!

becks x x x

I take Meclizine for it, it doesn't get rid of it, but it makes it so I can function.

I hope you start feeling better.

I've started accupuncture from an amazing woman. (I've only gone once, but tomorrow is my second appt)I was really skeptical at first, thinking she would tell me to never go to my dr again and such, but she actually told me that she wouldn't treat me if I wasn't also going to a Western Medicine dr. She said she'd treat me homeopathically, but she wanted me to do research myself on all the things she was wanting to give me, and talk to my regular drs about them. That totally set me at ease. I can't say that the accupuncture helped much that I noticed, I still have a hair trigger for passing out, but I had so much more energy afterwards. Iwent out with my friends for the rest of the day, and stayed up until midnightish, that night. I will definitely be seeing her more often

At least 2 of my Drs think that I should opt for the surgery as it explains almost everything...and I've been getting drastically worse for the past 3 months. I still have more Drs to go to to get their opinions though. Thank you all for your support and info.