Becia

I'm in a wheelchair because the moment I standup, my entire body tries to shut down, and I pass out extremely easily. Sitting up currently is a feat of strength for me. I don't feel heaviness or anything, I'm just very unsteady, and then the world is constantly spinning, then boom, ground. I try to do some yoga to keep my strength up, and such, but I miss the days I could ride a bike. I actually saw my bike for the first time in two months yesterday, and just about cried. I miss it. I hate what pots and dysautonmia has done to me.

Most definitely can be delayed. I think that's why mine got so bad aa week or so after my last heart ablation, and I've been in a downward spiral since.

I haven't had any immune testing yet. My doctors are really not managing my pots well, and I'm struggling a lot with different things, and they are just now coming to the realization that there's more going on that we need to manage. I'm having seizures now because of the meds now, and we are just now working on getting those under control. Just a bunch of crazy. All I know is right now is the most comfortable I've been all day... I'm wearing a really super soft, super big shirt and a pair of really big shorts because I can't handle the feel of the elastic on me, curled under my sheets. And I feel wretched, been fighting a migraine all day, which makes me more sensitive, and whiny, lol.

I have major issues with sensitivity to my clothing and such all the time, and am not on any special meds other than my pots meds. We asked the doctor about it one time, and he basically just brushed me off. There are times that my clothes just feel super constricting to me, and it's all I have in me to just keep my clothes on, and it's the same with bedding. This is why sometimes I sleep naked even, because I cannot tolerate my pjs on me, but the sheets some how soothe my skin and nerves. I haven't been wearing my compression stockings lately either, because it seems they just hit me at the right point of insanity, lol. Just can't take it, and I claw my legs once I manage to get them off. It's a pain to live with. Hope you figure out an answer soon.

I get in the same rut sometimes, and it's literally just because I'm tired of swallowing. I also feel I sometimes fill up on liquids, then I'm not hungry, so trying to walk that fine balance has been really hard for me. I was never given an ounce number to aim for with my fluid intake, so that also makes it hard for me.

Mine collaborated with the doctor if she felt like she was out of her league, but when I went in there for a sprained shoulder due to me passing out and injuring myself, the moment she found out I had pots, she refused to treat me anymore, and called me a liability. I told the doctor of the clinic about this, and I was really upset, because I liked how easily I could get into see her when I was ill, but if she thinks pots is a liability for her to treat, instead of researching the disease and working with me, she could go fly a kite for all I cared. They are good people, but I've had bad experiences with them I guess.

Hot showers and bubble baths, I love, but my body doesn't. I usually pass out a couple times while trying to shower, even when my water is cooler. I think it's the hands above the head thing, because I pass out easily when my arms are up. Hot stuff is usually a no no for me. I love hot tea at night, some peppermint, or honey vanilla chamomile, and if it's too hot, I pass out drinking it. Many a burn happened before I realized I needed to make it cooler for my temperature to deal with. The more triggered I'd been, the worse temperature effects me.

I think some of mine get worse around the time of ol Aunt Flo as well. Usually that's telling me I need some more iron and fluids, as I tend to get lazy in my drinking and electrolytes around that time, because I get very pms-y. Come to think of it, that's probably why I devoured that hamburger last night like a crazy person... We have also had some crazy weather, and that effects me too. As for the jabbing pain, I can't offer any advice, other than I hope you feel better soon.

In my family, I was the last kid born, and I was very much an "oops" kid. My parents once told me I was the one along for the ride, but I was also the kid they never had to worry about. Well, they didn't realize I had a drug problem until I admitted myself to rehab to get clean. They didn't know I had shared needles with other addicts. They didn't know I had tried to save a friend who died because of an overdose. They only saw me, who the day after I turned 18, worked hard to provide for the family when she saw her sibling do nothing. They saw the kid who always got up to take dad to work at 3am, only to be at school at 6am for classes, and would often school and work all day, still have to wait hours in the er with her Mom who was sick, and would be picking dad up at midnight, just to start the routine over again the next day. They only saw me taking care of everyone and everything else... Now that I'm in the position of needing assistance just to stand, I've been dropped like a hot potato by the family who says they care, but yet, never reach out to grab me. And I still end up having to help them... I still have bills I have to pay for the family, I still give my leftovers to my Dad if he drops by, to make sure my mom has something to eat. Never mind half the time I cannot cook for myself, but what I have, I still give to my family. The friends around me, are now my family. They have picked me up from the floor when I have passed out, they have held my body on the bed and protected my head when I've had seizures just trying to get in the door, they have provided meds to me because I need them to keep going... And they have paid my entire course tuition for something I can hopefully try and do when I get better. Drug me to tests, taken me for surgery, sat by me when I was in ICU, wiped my tears when I break down in anger at my body... They are my family. They've given me a bed when I couldn't stay in my home, earplugs when church service got too loud to tolerate, rides through the countryside when I couldn't stand being in the house anymore. They are my family now. Their guest room is now my home. This forum is my external friend... You all are my friends. You're wise, special, and awesome. And I'm grateful I found this place when I did.

Coat hanger pain... Never thought if it like that, but it's so true! I too have been loving up to my heating pad and some warmer showers to help stretch and relax my muscles.

EEG and MRI are both complete, I see a neuro guy on the 12th... We shall see how I do until then I suppose. I had another seizure Sunday, and a couple of smaller ones since, but I've also had a lot of triggers in the testing for everything, and no sleep, which doesn't help.

My neck stiffens up when I'm dealing with migraines, and lately it's been a bear to deal with. The feeling hot and cold though, is just part of my pots, I'm sensitive to my environments. Don't know if any advice, but I hope you feel better soon!

They believe the two heart ablations I had for wild pvcs started my pots decline, but they also think I've had it for years prior. The yoga thing started because I could feel my heart racing with everything, and the yoga sent me to my "happy place" sometimes. There are times it works better than others, lately it's not been very effective, but it's the only thing I now that I can do that shows an effort that I'm trying to regain control of my breathing, and hoping my heart rate follows. Lately I haven't been very successful, lol. Lots of issues. I think it's also a way to stimulate the vagus nerve, if I read this correctly somewhere, which is something a doctor told me to try doing one time during an episode. And I'm not sure about the co2 thing, because I stop breathing when I pass out apparently, and the only notice people have is the alarms showing I'm declining. Normally takes about a minute for everything to catch up, and I start breathing again normally on my own, although I have had to have help lately in the form of o2 to kinda stimulate me awake. It's all really weird.

I agree they do bite the big one. I'm just kinda glad I'm not alone in this feeling? And given everything else I'm enduring right now, it makes me wonder if there's some other testing I need to inquire about for what's going on. We are doing some seizure testing and such right now, which some of the meds I'm on for my pots can cause seizures, but it does make you wonder if there something else going on.

That is nearly exactly what I endure! Oh my word, I honestly thought it was just me who felt like that during a bad moment. I do try to do some yoga breathing techniques, count out my breathing to try and slow and focus myself, but normally I end up passing out, stop breathing according to those around me, and then end up gasping when I come back to. I usually feel pain when I come back to, my head usually hurts, I'm assuming from lack of o2, but if it's a bad out (as we call them, when I'm heavily triggered), I will not be able to move and will be extra sensitive to touch. It's not uncommon for me to scream from pain when my friends have tried to lift me or move me to a safer position (I can say passing out on the stairs totally bites).

You read the title, you've been warned, lol... I need to get this off my chest. I had it file for disability a couple months ago a part of a requirement for me to get food stamps because I can't work right now. In the timespan of me filing to now, I've gone downhill drastically, and am now on a wait list for Toledo and Dr Grubbs office, I've been hospitalized twice, and now I'm having seizures which may or may not be related to my dysautonmia,and can't walk five feet without passing out. We all know with POTS, we get denied fairly easy, but it's the symptoms that will deem us disabled. I haven't been looking forward to seeing a denial, but today, it was in the mail. I have a lawyer on file for my case already, which is good, I suppose, but it still makes me really upset to see that people who have not talked to me, have only seen two reports from my hospital stays, deem me okay to work, as long as I'm not commercial driving or working in unprotected heights. Never mind I am wheelchair bound, still pass out numerous times a day, must keep feet propped up to avoid blood pooling, and I honestly can't tell you the last time I managed a shower because I knock myself out more times than a quarterback gets sacked in the big game. I'm having an EEG done tomorrow, and a MRI done the next day. I now get to fill out more paperwork for the lawyer, fill out a appeal, pray my power of attorney can help me do all this mess, because I've done passed out double digits amounts today, and I cannot stay focused. I'm really really scared by how things have been going for me. I need to take a shower. But I'm scared to, because right now, the world is so Potsie, I can't even see straight. But yeah. Rant over. We all have parts of our dysautonmia that we detest and abhor... This is currently mine. My dad always says the worst they can do is say no, they can't bite or eat you. But the wounds hurt. That part bites.

I've had this happen to me too, normally while being heavily triggered by something (which can be something as seemingly minor as sounds or feeling of something on my skin). It's like my body goes into some sort of freak out overdrive, and it's really hard to handle.

As one who's been suffering horrible migraines and having seizures a lot lately, if I feel like I need to lay down, I do not take my Mido... But I also take a 10 mg compared to your 2.5, so maybe the effects are a bit stronger? I hate missing doses, but I don't sleep at night lately, and if I need to take something to knock me out with the migraine, I can't risk hypertensive crisis, so I will skip, and my doctors are aware I do this on occasion.

Had to see a general practitioner yesterday to get my MRI approved, and he was doing some research in the office while we were talking. Apparently three of the meds I'm on for my pots, can cause seizures, but we both know I cannot go without them. They were the florinef, Paxil, and the bentyl I take for my ibs. I have family history of this, but never had any myself, so it's all kinda weird to me for some reason. Looks like after my testing, I might be on some preventative with some migraine assistance per the neuro guy, which I need anyways with as many as I've had lately. Still having seizures though, which really ****,because they hurt. I'm black and blue from hitting things already, I apparently hit the dresser hard on Monday, as I'm really beat up, and I still have the headache. Also, the fact I get two hours of sleep a night, that doesn't help them either. I'm flat out exhausted, and it's beginning to take a toll. Maybe twice or so a month, I get enough rest to feel energized. Most of the time, I wear myself down so easy trying to be normal, I don't know my stopping points until I'm flat on the ground. Thanks for y'all's info... I have gathered this information, and plan on taking it with me to the doctors.

And for what it's worth, pain is tolerable right now, not nauseated, and I baked two loaves of bread from scratch. Perfect smell to make me at least smile, and all came together so easy with my roommates kitchenaid mixer, haha!

Thanks Corina, I appreciate it. I have a appointment with a new doctor today, to get my MRI and EEG orders approved from my insurance (some awesome person paid for me to have my cobra insurance), and I'm a little nervous. The feelings I keep having apparently pre seizure are very different, and explaining this compared to my normal outs is hard. I'm going prepared though... The people who have been with me during them all are on standby on the phone, and one should hopefully be in the office with me if she go there in time. Lovely lovely.

I have no words of wisdom, but I am too on the waiting list for Dr Grubbs, and in the same boat in treatments. I look forward to hearing how it goes when you see him, and anyone else's thoughts.

Well, the seizures struck again yesterday, and I was back in a different er. They did some more extensive testing, have me in with a neuro and an EEG and MRI on order. I feel different compared to my normal syncope episodes, and I spent a good portion of yesterday very upset because I couldn't convey this to the people. My main problem right now is pain. I cannot get rid of this migraine, and I'm throwing up so much. I have a script for phenrgan getting filled, hoping that will help the nausea, but man. Becia needs to catch a break! Becia needs to get out of the house, smile, laugh, cook... Oh dear lord, I need to cook, lol... Thanks for y'all's support... I'm really glad a place like this exists for us, for those who understand.

They haven't done a thing yet, other than a ct scan and some bloodwork. I'm in the process of finding a doc that will send me to a neurologist and see what we have to do here. I had a couple tonight, so they aren't going away, and I'm currently sick as a dog with a migraine to boot. Pretty sure the stone floor I just woke up on a bit ago didn't help either. I'm just wishing this would end, ya know? Hopefully this week will provide me some answers, because I'm not playing nice anymore.

A bad fall is always possible, I seem to kiss the floor more than I kiss guys these days. As for new food, not really, as I haven't been able to eat a whole lot lately, so I've been using the regular old stand bys of crackers and cream cheese, potatoes, rice cakes, etc. I forced myself to eat a bacon and tomato sandwich yesterday, which was a feat in itself, but I got sick soon after from it.