ode_to_fantasy

So a nurse called me the other day to tell me that I do indeed have a cyst on my Pineal Gland. I have an appointment Monday afternoon and Tuesday morning to talk more about it. I was looking it up and it would explain alot of my symptoms...not all...but a good deal of them. (My Cardiologist could figure out why I've been hallucinating, but this explains it.) I'm terrified of the thought of brain surgery, but really excited about the thought of maybe feeling normal for the first time since I was a kid...even if it takes a rediculously insane brain surgery to get there. I hope that sugery will take away at least my migranes, vertigo, and hallucinating...maybe even my passing out! I know I have the tachycardia and nerve problems, but I'm excited that I might be able to get even a little bit better!

Hey Amber, I was actually really tired when I started taking it. I could barely move actually, but it definitely helped with the brain fog (when I was awake). They upped my dosage from 25mg a day to 50/day because I was still passing out constantly. They told me I needed to up my dosage when I told them that I was so exhausted I could barely move, I was getting horrible pain in my arms and legs, hallucinating, and migranes....Though it helped with the passing out I guess somewhat, but it made me feel constantly pre-syncopal (I don't even know if that's a word). I finally stopped taking it because it had my bloodpressure (normally 121/70*ish*) down to 50/30, and my organs started shutting down. I don't know why they upped my dosage when I felt so miserable anyways, when they could have tried something new, but maybe upping the dosage is supposed to work better? Aaanyways, hope you have better luck with it!!

I get these all the time. I have no idea what it is, I just figured it was part of the whole NCS/POTS thing.

I have a cardio named Marilyn Kuo. She is part of the Clearwater Cardio. She is great but I still am trying new things with her. Have you tried Shands? I saw a few docs there about my Lupus...I wasn't too happy with them but maybe they have a good Cardio. Good Luck! Lori I actually go to Shands, and my Cardiologist is awesome, but he recently told me that he doesn't know what else to do.

So I got an MRI last Friday, and they called me up on Monday to tell me they found something abnormal with my Pineal Gland. They wouldn't tell me anything else about it, so I had to go back in this past Friday and get another one with extra scans....I don't go to my Dr. to discuss the results of my MRI until next Tuesday. My question was, has anyone else had problems with their Pineal Gland? Something wierd about the dye for the MRI as well, it's the first time I've "passed out" laying down that I've been aware of. They came and put the dye in me, and about 2 minutes later I was counting the little lines in the light above me (because I was bored) and suddenly I jerked waking up. I was wide awake before that, so I don't think that I fell asleep. It was totally a surreal experience. I had really bad tachycardia at the time, and I know that some people have problems with needles, but I'm definitely not one of them (I think needles are fun! hehe). It felt like I wasn't even in my body. I dont normally use a wheelchair but I literally couldn't even stand up after it...which was wierd because I'd had an MRI the Friday before, and had no such problem. Anyways, does anyone have any ideas?

Hey Lori, I'm actually looking for a specialist....what Dr. do you use? I live in Gainesville, but I'd be willing to make the trip for someone who knows what they're doing...

Hehe. Thanks, I'm wierd about taking new things, so I'll definitely talk to my doctor before taking this. My sister's always coming up with random things to "make me better", it's sweet, but kinda impractical. This looks interesting though.

I'm actually going to my Dr. for this exact reason on the 25th. It recently started (like 2 months ago) and it's really bad, especially in my right breast as well. Let me know if you find anything out, and I'll do the same!

My sister just suggested this as an alternative to Gatorade because I've been complaining about the weight gain (I'm drinking insane tons of the stuff). I was wondering if anyone else has tried it? It seems like it'd help for my hypoglycemia as well....but I'm kind of wary about things like this. I'd love to hear other people's experiences, if they've had any? The info on it.

*hug* I'm so sorry. I, too, lost a baby last week. You're in my thoughts.

I think I will bring this up with my Dr. as nothing else has helped. Thank you!

*hug* I know it's frustrating, it's taken almost 10 years for me to get some straight answers...and even those are kinda vague. I hope it gets better for you! I was suprised and touched by the support I've found here. And I'm glad you know you have friends here!

Unfortunately I'm allergic to Midodrine, and my blood pressure's actually relatively normal when I'm not on the Toprol XL (though for some reason my Diastolic is always WAY lower than my Systolic *ie, 121/40* which kinda makes me nervous). I'll talk to my Dr. about Mestinon though, thank you! I feel silly being so happy about this because I work full time.....but I sit all day, and have people "babysitting me" even when I get up to use the restroom. I am fortunate to have found an awesome job that I can do even though I'm sick half of the time.

Is it sad that I'm sooooo happy that I walked to the store(it's literally right next door) by myself yesterday? I only had to sit down and rest once, and I didn't pass out at all until I got home!! I recently stopped taking Toprol XL because it was making it too difficult to function, I was still passing out constantly, and it made my bloodpressure drop to almost non-existant levels. It did help my tacchycardia(sp?) though...I'd almost forgotten how bad it was. But now I actually have energy! I know it's a kinda silly thing to post, but I don't think I've walked anywhere by myself in like 2 years. hehe.

Yay! I was about to ask if there were any groups on LJ.

Pooo. I'm trying to get in to see Dr. Cheshire in the Mayo Neurology clinic. My doctor says he specializes in autonomic disorders. I hope it's not a waste of money

I've been on an event monitor for this, but they found no arrythmias (sp?) or anything that could explain it. I find that it usually happens when I move my head to quickly or something though...I don't really know what could cause that.

I get this all the time too, and none of the meds I've taken have helped with it. A while back I was diagnosed with "focal seizure disorder" because of it, but later on my neurologist said he didn't think that that's what it was. Because I pass out sooooo much, they just think it's like a smaller version of my regular blackout. I don't think they have any idea what it is. Hope you feel better!

I've been going to Dr. Miles at the University and Shands here in Gainesville, and he's been awesome, but he told me this past time that he doesn't know what else to do...so I was going to try to go to Mayo in Jacksonville to see if they could tell me what to do next. *sigh* I don't think we have very many options down here.

they told me that my TTT was positive, and they injected me with adrenalin as well.

has anyone been to the Mayo Clinic in Jacksonville, Florida? My cardiologist told me on Friday that he can't do anything more for me I read on DINET that there's a specialist in Jacksonvillle, has anyone seen him?

I've had it for almost 10 years, and I'm 23.

It's strange, because I'm exactly the opposite. I pass out almost constantly when the temperature is hot, so I keep my house at 68? constantly...but I live in Florida, so maybe I get that way in extremes, but I don't know it, because it's never cold here. hehe. My friends always complain that my house is cold, but I usually have to have fans on, and take cold showers too! I wonder if it's just the extremes...?

I get bacterial infections that don't go away, and my doctors can't figure out where they came from. It's rather disturbing and annoying.

I was thinking that I pass out in my sleep, but my husband thinks that if my brain had such a little amount of oxygen that I was passing out, how could I still be dreaming? Random thought.