UnicornIsis

I feel like a zombie, a very rested one. I have the HARDEST time getting to sleep. I wake up so many times during the night that I originally made 10 the limit when I'd stop counting, well I've hit 35 times in one night, and I refuesed to keep counging after that!! I'm on Paxel. Hugh Calkins at Hpokins put me on that. They've raised it to 30 mg a day since I started it back in Dec. Does anyone else who takes Paxel or other SSRI's have trouble with sleep? This is getting ridiculous!! I sleep more hours than I'm awake now!

Dan, First I agree!! You get the Guenia(sp?) Pig Award for this week. That's amazing/aweful, but knowing the hospitals in Richmond, believable. I usually go to St. Mary's of Henrico Doctors (original campus) if I have to go the ER. If it's something weird and unusual I'll go to MCV, but if it's a routine, normal emergency, I refuse to go anywhere near MCV!! I had a migraine one night and was seeing Delorenzo at MCV at time while they were still trying to diagnose me. He said the next time it happened come to MCV and page him and get him there immediatley. So I do what he says, like an idiot, and go. I spent 3 1/2 hours in the waiting room and that was only because dad finally got tired of it too and walked up to the desk and showed his badgeS plural and the nurse freaked. After 4 hours in the back of my screaming and crying the nurses just looking up from their desk and looking back down and not having my parents back there because I'm 21 the doc finally came to see me. Anyway, another 2 hours after that they finally gave me the pain meds and anti-neausa meds. But the guy on-call from Delorenzo's office didn't show up until after the migraine was gone. They never listen to anything you tell them, even if you show them a letter from your doctor saying this is what you have, this is the meds you can't take or you'll die, these are the meds you can take, etc. The still don't pay any attention. I hope you didn't go to MCV, although with not being sure what's going on with your's you might want, but be prepared for a LOOOOOOOOOOOONG wait and them not listening to you. Okay, just realized I was ranting about my own story! SORRY! I'm glad you're doing better now and I'm sorry to hear about that horrible experience. You're in my thoughts!! MP

Thank you Dan. I know about where you are. I really apperciate you positng even though you're better and don't have some of the same stuff and your words of encouragement. I'm sincerely glad to here that you're doing better and sorry about the throat problems. My granddad had trouble swalloing and it turned out to be lung and throat cancer, but don't worry I'm sure your's is not. Thanks for the name of the doc at UVA. I'm about 1/2 and hour to an hour from there in Goochland. Earth Mother.... Do I detect someone who once had or now has hermit crabs? I agree about the doctors. My PCP still won't let me drive. He finally gave in the last time and said when I'm symptom free we'll talk about it again. I think part of his doesn't want me driving because he's known me since I was really little and he doesn't want me getting in an accident or hurt, (like my brother did!! ARGH!!). I did think every now and then that maybe some of this was in my head or I was over-analyzing ?I guess? some of it, but I KNEW!!! most of it wasn't. As soon as I could tell the specialist didn't want to admit that he or she didn't know what was going on, I basically stopped looking at what they said as credible, but I did continue to listen to what they said in hopes that there would be a miracle and he/she all of a sudden know what was going on. But, no such luck until I hit Hopkins. Mom and I are going to try to see this guy in Manassas a peds cardio guy because I REALLY don't like Calkins at Hopkins, even though I LOVE Sally Snader up there. Michelle, THANK YOU!! I joined after I read your post. Just found NDRF.org last Wednesday, here last Thursday, and DYNAkids.org last Friday!! So I hadn't even had time to look at all the parts of the sites yet. I hadn't seen that yet. I think one thing we need to tell our doctors is about all the support groups out there for this. That was one of the first 10 questions I asked at Hopkins. I was told there are none or that the person didn't know of any. I kept going, there can't be NO support groups out there for this. This is sooo WEIRD that somebody somewhere has got to have formed at least a discussion board just to rant about the weirdness of the symptoms and all. Finally TOTALLY by accident I found NDRF.org and then from there, here. As my mom says Things happen to us for a reason, we may not know what that reason is, but it's for a reason. And as my dad says Somewhere there is a family that nothing happens to.... and we make-up for them! Someone here is always getting hurt or normal sick or something happening. Nina, THANKS for all the links!! I'd love more!! I'm going to e-mail you sometime this week, if I can remeber. Between bad spells of this and ADHD I have an almost permanent Brain-fog!! MomtoGiuliana, you wrote: "I know how isolating it is--we all understand! Your friends and relatives go on with their lives, and yours has come to a standstill. Hopefully, you have a few people in your life who are caring and supportive while you go through this. And it is wonderful to have a forum like this to turn to, too." The my life at a stand-still is exactly what I was feeling and couldn't quite get into words. I talk to my friends every now and then and they're telling me what they're doing at college and I keep thinking I'm supposed to be stressing over term papers and reading 150 pages a night and complaining about Dining Hall food. It's even worse when they tell me I only have this much time left till graduation and I'm thinking I was supposed to be class of 2005 too. But at least I have 2 full years of college under my belt and I can find a way to finish online somewhere I hope. I have always been a loner and an introvert so that's helped me dealing with the isolation. Genie, thanks for the offer to the e-mail and the good advice about being sick. I've only been sick a few times since this started for me. The rest of my family has REALLY STRONG immune systems, they almost NEVER get sick. Since I got non-EBV mono my immune system has been even weaker and I thought it was weak enough before. When I've been gotten sick since I've been sick with this, I just thought the cold or virus was really kicking my butt and my immune system must be weaker than what I thought. But what you said makes a lot of sense and I kept thinking that some of the tiredness, weakness, and other symptoms seemed like just too much for it to be just a virus or a cold. So I'm REALLY glad you told me about that. Thanks to all of you for your support and encouragement!!

I would suggest a lot of the same things. I went to Italy pre-NCS and POTS. But remember I'm new to the diagnosis and still not making any progress treating it, so take what I say with a grain (or handful for us) of salt. I would take salt tablets with you so you can up the salt if you don't have a lot of salty snacks. I agree with the sleep thing. That was the worst problem for me when I flew. Take something to to pep you up when you need to be awake, I would normally suggest a caffine pill, but not for us. Also take a motion-sickness drug. The 2nd neuro I went to told me I had vertigo basically and that the nerves in my ears were hyper sensitive. Anyway he put me on meclezine -- don't know if that's spelled right. It helped a little, especially in the car--which I'm dizzy all the time in the car. He was going to up me to scopalimine (sp?), but I'm allergic to adhesives and it's administered in a patch that you place I think on your neck. Also he wanted to put me on it long-term and it can cause nerve damage for long-term use. But I would suggest some kind of motion-sickness drug. The flight will probably feel horrible, so try to sleep as much as you can during it. I would also definately take pressure hose. I've only had them one day and they were great that day. I would also take light cloths as it's summer for them and going to be hotter. Heat is worse for most of us so take cloths that are easy to take on and off like a sweater for when you get to strip off and easy to put back on once you cool down and get cold. Something that helped me in hiking class at school (pre-sick) was a camel-back. It caries water on your back and keeps it really cool/cold. It's very light weight and that way a lot of water is always around you. Plan to sleep a lot once you get home too! :>) That's all I can think of for now, hope this helps!! And I hope you get to have some fun on your trip.

I would REALLY APPERCIATE anything anyone can tell me about any of this. I'm new here and new to my diagnosis. I spent nine months going from doc to doc. My PCP admitted right away that he didn't know what it was and immediately sent me to evry specialist he could think of. So I give him a LOT of credit for that, especially since he works in one of those walk-in anytime "Patient First" deals. I was finally sent to Johns-Hopkins. I've already shown intolerance or not working enough for most of the drugs out there for this. I have NMH-Neurally Mediated Hypotension (or whatever version of the name you want to call it), secondarily POTS and I have Mitral-Valve Prolapse. I was diagnosed at Hopkins the day after I turned 21. Great Birthday present huh? I live in Virginia, 1/2 way between Richmond and Charlottesville. I want to find someone I near me with this, I'm willing to travel to any part of Virginia for this. Or even just someone I can call/e-mail and talk to about what's going on. I'm sure most of you know that feeling. I have been told by all of my doctors NOT to drive and the ones at Hopkins said that if I do, they'll report me to DMV for my medical condition!! Do any of you drive with this? I live out in the country so there's no bus to hope on. I'm stuck at home most of the time. I'm weak and tired and dizzy almost all the time, even on the meds. I've barely been able to find any info on all of this, so any sites, books, articles, etc. y'all want to reccomend I would LOVE. Also if anyone wants to reccomend any doctors I would apperciate that too. I've been told by Hopkins that I might have a connective tissue disorder and I'm trying to find a doc to go to for that. And we've figured out that I do have a milk-protein allergy. I never liked milk, but I'm allergic to everything under the sun, including the sun as my ex used to say, so we never bothered trying to find out everything I was allergic to. But since I've cut out milk, I feel better. I'm living at home with my parents and 18 year old brother. I had to quit college. Mom and Dad now take turns taking me to a night class at the local CC that they finally agreed to let me do in January, but only ONE class. I can't work, they won't let me drive, I can't go to school full-time. What am I supposed to do? My cat and hermit crabs and computer only take up so much time. I also have ADHD so I get bored a lot and have trouble remembering things. Oh yeah, two last questions, since this is already so long. I shake sometimes. Hopkins said it wasn't related. But it usually happens when I start getting a bad spell. Do any of you experience this also? Plus, I had a sudden onset a few months after I got non-EBV mono. Did anyone else have sudden onset? The Hopkins doc kept saying there had to be eariler instances that I didn't remember, it doesn't just come on sudden. I did get dizzy easily when I'd stand up qickly as a child though. Okay, finally done for this one. Thank you just for reading this!! and for being here/existing!!