Becia

I've had to make that call several times. It completely ***** and hurts. In fact, I'm still pretty raw from a few of them. But the only solace I can take is they are no longer hurting, sick, and they are whole in body and spirit. I fully believe I will see them all again someday. *HUGS* I'm sorry for your loss.

Oh no That's horrible, I hope all goes well with your EEG. Yeah, apparently four of the meds I'm on because of my pots or for injuries caused by me passing out have the side effect of seizures, but they won't reduce or remove the meds until they find out for sure if this is a side effect, or do I have epilepsy. Not cool, but EEG in two weeks, so hopefully answers soon.

My friends and I take a checklist in with us, and if I don't ask, she or he will. I also try to wear my sunglasses if I'm really sensitive. Most of the time I end up passing out just trying to get there, so he knows I'm pretty foggy, but if we can write as much of this stuff down as possible beforehand, we seem to get more answers. Also, tape recorders can be of benefit, incase we don't write down what all is said.

I'm having horrible headaches and possibly seizures because of florinef, but my doctors don't want me off of it. As for depression, I don't know about that, my docs mentioned wanting me on Paxil because it could help with the pots, and help with the depression that being ill like this is causing, and I was on florinef already when they decided to add this. I don't think this drug is doing me much good, but hindering me. I'm hoping my next EEG will maybe get the dosage lowered, or removed totally.

I guess I'm lucky, I don't overheat as much right now as I did during the summer, and with the fact I never leave the house unless for church or doctors appointments, I can leave my cover off. The few times I've recently gone without cover outside had really made me feel self concious, lol. What bothers me is giving up everything I love too... Playing drums, singing, signing, laughing. I pass out laughing.

I can't have my hands and arms above my head for anything without passing out. I would pass out in the shower, but we didn't realize how bad this was until I passed out trying to put my hair up in a ponytail one time. A few weeks later, chopped it all off. It's okay, I prefer long hair, but I cover my hair for religious reasons, so it's not so big a deal. I also used to interpret for the deaf at my church, and having my arms and hands out and up in front of me, bothers me too.

I have a lot of trouble swallowing. I get choked on water, which isn't good because we need so much hydration! I haven't had a swallow test done, but it's probably in my future.

*hugs* I'm kinda in the same boat. Still trying to recover from thanksgiving, my birthday, and a busy weekend on top of two very long and busy days. On top if that, I think I'm coming down with something, because I'm coughing and stuffy along with absolutely no energy. I am laying here in bed thinking of all I need to do, like school stuff (taking transcription classes at home), or cleaning, or cooking, and literally can't make myself do it, no matter how much fluids I'm drinking. As much as I need it, I don't even feel like drinking. Roommates are probably gonna have to start forcing Gatorade down my throat, lol. I normally have insomnia, so when my body decides it's not gonna be awake, I tend to go with it. Only problem is meds. Midodrine doesn't let me lay down, so I've been skipping a couple doses the past few days to allow my body to rest.

I max out on doses everyday for Tylenol, but haven't noticed my pots getting better because of it.

I rarely feel my feet, but when I do, it's because they are so cold feeling to me, yet when I take off my socks, my feet are sweaty. Same thing with my fingers. I've been like this for years, so I don't know if it's part of dysautonmia, but I can tell you it bites, lol.

Can't help ya, but I can say I'm just as spacey and fuzzy feeling today, and we have the same snowstorm coming our way too. Right now I'm chalking it up to be flat out exhausted from Sunday, and schoolwork today, the change of weather, and the upcoming holiday energy. I don't do well in loud or busy areas, and I haven't been to my parents house in several months, so thanksgiving is going to be a experience that I'm scared for. I'm hoping the two quizzes I submitted to school today are decent grades, because I got through one, and literally looked at it for an hour praying I read the instructions right, lol. Just not there at all.

Anytime they give me compazine for nausea, my hr shoots up to over 200. And if I recall correctly, same thing happened when I got reglan too. I have both of these drugs on a listing of allergies now for those reasons alone. I have tachy issues anyways, I do not need anything else to make it worse.

I know my five mg pills were tiny and pinkish. My 10 mg pills are white and huge. I choke on them on a regular basis.

Hahaha! Love when doctors do what, and when you repeat it to them, they get the weirdest looks. Mine did something similar to that. I never saw this man blush so much!

I'm an out and unaware person too for procedures, except for my last heart ablation, they didn't knock me out, and it was horrible. The first time I had an ablation, they ended up knocking me out because they found four places misfiring, but the second time they didn't think about doing that, but they did give me some versed to try to relax. I was okay until my doctor said he was having issues finding the place misfiring, and I started crying. He ended up doing a different tracing to locate the area, and started killing it before they got me out, so I felt everything, and you wanna talk about pain, I thought I was dying. I take drugs and knocking me out any day, I'm a big chicken when it comes to stuff like this. Of course, I end up waking up crying and freaking out, and feel like heck afterwards, but oh well.

I wish my midodrine was smaller... My 10 mg pills have been really tough to get down lately. I believe Mylan makes mine.

You know, I ask myself this everyday. How am I going to cope with how I'm feeling compared to what I have to do, to who I'm going to be around, where I'm going to be going. And my answer is, I don't know. There are days I have no clue how I have made it without passing out into the double digits, how I managed to not throw up because of the screaming migraine, how I managed to not hurt myself when having a seizure on the stairs trying to crawl into the house. I don't know now I cope. I do know I cry a lot. I curl up in bed with panic at the thought of leaving my room. I journal my feelings. I cry in the shower. I listen to music that fits my mood, and sometimes those tunes are a bit rough around the edges, and sometimes they are all flowers. I have no advice, but just (hugs) for ya.

I wear knee high stockings sometimes, I'm like Rachel's son and have sensitivity, so sometimes I can tolerate this, sometimes I cannot. I also use wheelchairs in my house and out, but mine are not power, nor recline. One doesn't have feet so I can work my legs a bit.

I have a piano game I play on my iPad that kinda throws me for a loop, but I've never gamed like call of duty, so I don't know what to say. When I play the piano game, if I look up from the screen, I'm really dizzy.

I never feel like I can catch a deep breath when my midodrine has kicked in. I gulp air essentially.

I was diagnosed in the summer, and haven't done well with the heat, so right now is the first experience I have with cold weather and my pots. What I don't like is I already don't feel my extremities, the cold really makes this worse. I haven't felt my feet all day, but they are now swollen because of me having appointments and they've been down for a bit. The cold makes it hard for me to breathe too.

I just know next time I'm taking my roommates with me. I was trying to explain to this guy I do not remember these seizures, I only know what I've been told by the people around me. Asked if I bit my tongue or anything, yes, I have realized I somehow ended up with cuts and sores from them. I have bruises I have no clue how I got them. I've woken up on floors and had no clue how I got there. I have a massive screaming headache that never goes away, I haven't slept in ages, and when my body does decide I need sleep, I'm down for the count for a week. But because I pass out so frequently, there's no way these are seizures, according to him. Yet, I'm wasting about 2,000 bucks doing testing that has shown I have some sort of abnormality, and you want further testing. And I couldn't understand him, he needed to look at me so I could read his lips somewhat, and he kept looking away and interrupting me while trying to explain what was happening. Oh, I am so mad. If I can get the energy, I need to bake something. Dinner is likely going to be a piece of bread and jam, and cake, lol.

Bumping with an update... I just got back from the neurologist. MRI was clean, my EEG was slightly abnormal, so they are scheduling another longer EEG to be done soon. I got no answers from this guy. He was rude as well. I'm sorry I shake because of my meds, I'm sorry I'm nervous, because I don't like new doctors, and I feel horrible right now. I'm just not happy. I'm upset that I triggered myself so bad just to get to the appointment, just to not really get any answers. They wondered why I wasn't on any preventative.... Well, that's why I'm here, duh! So I guess I get to continue having these for a bit longer. And I'm going back on my stomach meds, even though they apparently can cause them too, it's not worth suffering so much with this. Becia needs chocolate. Or something. If I didn't just take my meds, I wouldn't be opposed to a beer even.

I'm in the middle of fighting for disability myself, and from what I understand, it's not classified as pots as the reason for the disability, but the symptoms that are caused by it. Like a couple said here, it's classified as a heart condition, a neurological condition, etc.

I know when I worked in the hospital laboratory, I couldn't have water in the phleb pit, but I could at my desk. As for at the nursing station not allowing it, well ours had drinks everywhere, and some were closed, some were not. I'm curious to see what should happen. I don't know if it's Ada, but it could be I suppose. The rules seem to change every year for OSHA and Jcho.v