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Thank you so much for sharing that...... tennille

libby~ that could definitely describe some of my episodes.... especially the ones im having here lately, i actually think i have had many here lately just about like what you described. One thing I have figured out about DYS for me is that for one: I have either new symptoms or a change in either the way the symptoms feel or how severe they get.... at first for many months, i had no idea what was going on.... but now, I know that my symptoms are somewhat ever changing and it seems every 3 weeks a new symptom or a new cluster of symptoms pop up out of nowhere. In this area, i can handle them ok and i know to expect them (i never know when they are gonna come though) but sometimes they do throw me for a loop when i am not understanding what is going on. Im usually symptomatic 24/7.... it's a constant fight. But yea, sounds like one of my episodes.... may sound weird... but i have been able to distinctly identify several types of episodes for me.... ugh. hope you feel better tennille

ahhh Bella, so good to hear from you You are always so comforting and peaceful. Thank you for the prayers and hugs, as at the last min, i decided to force myself to get to that appointment. I literally got ready in 5 mins and i hadnt taken a shower in a couple of days, (hadn't had the strength) but i threw on clean clothes and brushed my teeth and went. didnt even brush the hair, just pulled it back and went zits and all.... lol. I was glad I made it, and lo and behold i get a text from my mom that she had my son at the doctors and he had broken his finger at football practice..... i didnt know whether to vomit or pass out on my therapist once i got there, i had one heck of meltdown.... but by the time i got home I had used up all my spoons for the day and in the bed I went. Having trouble breathing, which normally means an acute attack ahead.... havent had a breathing issues in a few months and now it's starting up again, one of the symptoms i seriously hate the worse but made my appoint.... and oh to everyone else: my therapist can't do phone sessions and this was the reason she gave me that i found interesting. As therapists they have to 'see' the patient as they study the body language as the person speaks, therefore appointments cannot be done over the phone. I was disappointed as i would only use them on days i am seriously ill, like here lately. Oh well, i took a stab at it. Thanks everyone! Love you bella! tennille

Bev~ yes! that's how i feel on my bad days, as i have no strength to even speak really and it's as if i forced myself to go, id totally bottom up the rest of the day or worse..... and it's also hard to form sentences and think and speak when im at my sickest and having a bad day.... i already stumble with words, stumble to find them in my head and stumble trying to pronounce them and form sentences..... my therapist notices it everytime, and she knows it stresses me and humiliates me.... im so sorry your health is causing issues with your marriage..... that's one of my biggest fears these past weeks.... as i feel im not contributing to anything.... but i just can't help it at all.... our men just don't understand all this inside us and the massive amount of what we have to deal with 24/7. Sometimes i feel so sick that i just want to crawl of out my skin, or i get that feeling as if someone is pouring hot acid on you and you are desperately trying to get away from it or get it off..... like a defense response. i too, have had to just go ahead and postpone my dentist appts.... that is, if i can get my dentist back and all. I will keep you and your hubby in prayers..... that his heart, eyes and mind open up to the severity of this disease and that he remembers, for better for worse, in sickness and in health.... thank you bev, for your reply...... tennille

I do have a hard time getting in with my primary DYS doc when im in the worst of the spells... as he is also a professor at our local medical school here. So, it makes it hard to get an appt when i need him to see me in the state im in... I actually messaged him through facebook one day to let him know how the mestinon was doing that we were trying. He replied and was concerned and seemed to not be bothered that i contacted him via that method. But, I feel like im treading on some privacy ground as to messaging him through facebook. Im actually gonna ask him if it would be ok if i perhaps, wrote him a weekly 'rap sheet' and emailed it to him..... with some key thoughts and 'theories' in them. I'll have to see if he will be ok with it........ however, if i remember correctly, he said I could email him, at my last visit with him..... i'll have to check in with him to see if he wouldnt mind that i emailed him weekly or bi-weekly, especially since im his only case with a disease like this..... thank you maia very much im glad to know that im not the only one in this boat alone, as i have alot of anxiety and panic from the guilt of missing appts..... tennille

katybug~ thanks so much for your kind reply. Im thinking, that at the precise time for my therapist appt today, that i'll just call her and see if we can arrange to do it over the phone, starting today, for the days im sickest... but go in person on my good days..... im hoping she will work with me on this.... as i think she would, unless there is certain procedures she has to abide by. for my DYS appts.... if im at my worse... either hubbs or family helps get me to and from them.... a month or so ago, i was in a spell, barely made it to the doc and he seen the shape i was in just laying there gasping for breath and just wishing the sickness/spell would ease up... very glad doc got to see me that way, but that wasnt the worst of spells.... they called hubbs to come get me home, as i couldn't hold my head up, nor could even drive myself back home.... so, for those appts with the DYS doctor, are usually where i pull out my 'reserves'...... however, my family and hubbs are already doing so much in taking care of the kids, getting them to where they need to be, etc... and i feel like such a burden already.... what's totally kicking me for a loop, is that in my spells, i don't have the strength or energy to even talk???? it's like to even speak, im exhausted within mins..... so you could say im quiet alot (in person that is...) I mean, our best method of communication (speaking) is even affected badly..... i think i might be getting off subject.... my brain fog is beating me to death here lately too..... thank you katy..... keeping my fingers crossed that my therapist will do this one on the phone today..... tennille

wonderful post i've had some severe anxiety that has actually shocked me this past week.... don't know where it's coming from, but boy is it scary.... i will have to use the 'sit, stay, heal' technique that you mention.... and it is so hard not to compare ourselves to normal.... so hard. But i think, what's even harder for me.... is i feel so very useless.... so useless.... and im a go-getter, hands on, multitasker, take the bull by the horns kinda gal..... yet, i've lost all of that...... im bookmarking this thread, so that i can go back to it as a reminder... as i book mark many of them on here, so that i can go back and read them..... im glad you took the time to post it and thank you for that. tennille

leize~ i certainly understand EXACTLY what you are saying.... I am not coping well as im more down than i am anything anymore with sick days.... it sparks confusion and feelings and thoughts of all kinds of sorts.... im a fixer by heart.... i can't fix this... i dont even know how to manage it.... mostly i stay positive, but here lately, it just aint happening.... when i think i've got a grip on something, it slides through like sand in my fingers.... how i want to get my life back on track.... i think about that one thing constantly, hoping for it, but it never comes..... i myself, am at odds..... leize~ wishing you comfort and peace..... and wishing you better days ahead tennille

bella and leize~ i pray you gals are doing well..... long time no talk to.... ive been down myself, i think in every way possible and im just not jivin' with it these days alicia~ ive not been diagnosed with seizures.... yet.... but it is highly suspected. Your post brought my attention, because i cannot take benadryl or vistaril, etc..... those type meds trigger a seizure-like episode for me.... i didn't know what it was doing really, but i figured it out 2 years ago that i needed to stay away from these specific meds. Im ok with zyrtec, but then zyrtec has a different chemical structure, etc..... it's almost like if i take a benadryl or vistaril, it's like i have an immediate allergic reaction but no where in the typical sense.... on the inner ear.... im so sorry... i have no clue as to how to treat that, as i have never had inner ear problems... or at least any that i know of..... hopefully some can jump in with some ideas.... hope you feel better tennille

BTW.... thanks for this poll.... glad you posted it. and shout out to all of yall on here that i havent spoke to in a while dealin with this disease is hard, and i havent been on here much, as my coping mechanisms are nonexistant these days and im just falling apart it seems.... ugh... tennille

it seems i have either none or 2-3..... i did have a good week or two this month, but with bad days in them.... but mostly its about 2 days a week for me.... if that. tennille

Hey everyone..... I've been down with a spell since last tuesday. I had a couple of good weeks (i think, heck i cant remember fully) but last tuesday i woke up to a bad, really bad episode that lasted until basically saturday.... sat and sund i felt better, but today im down again (i've been without my meds for the MCAD for 3 days, and i think that might have triggered today)...... my problem is, my luck just doesnt seem to hit at the right times, ever.... and it seems every doc appt, therapist appt, tooth appt, its always a bad day that i can't walk, talk or even drive..... these people are getting tired of me not showing up to appts.... but i never know what day is going to be good or bad. I felt decent enough yesterday to have the mindset of thinking i would be able to make my therapist appt today, which i so need due to the wishy washy behavior of this disease, as it's throwing me for loops mentally, emotionally and psychologically, but I woke up to another 'bad day'... and as i stand for a few mins, i just have to lay right back down again or else fall in the floor.... i have more than once told each doc/therapist, etc.... that my disease is predictable to the fact that it is VERY UNPREDICTABLE...... and they seem to understand... but as i miss appts.... i know in my heart they are getting tired of it.... but in no way can i help it... as i get tired of it myself. However, regardless, i do not miss my primary doc appts as he is hard to get in to see and he's really my only hope.... if i have to be carried in, then i just have to be carried in...... How do we deal with this? How do we deal with the guilt of missing so many appointments? How do i get them to truly understand that I cannot plan ANYTHING with having this disease, as i can plan for the next day, then wake up and can't walk...... I couldnt wait to get to my therapist today, just to talk some things out about being so dang sick...... but im in bed, dont have the energy or the strength to shower and clean up.... dirrehea, vomitting, and faintish...... I feel so guilty for missing my kids appts, and my own appts.... and i have no earthly idea what to do. I think my dentist just 'fired' me due to missing the last 2 appts, but i had explained on many occasion that one hour i could be fine and the next i could be on the floor begging for some sort of relief from the suffering..... people just have no clue how much suffering this is..... not even the tiniest amount of a clue. Sorry.... im at odds with this.... struggled with doc appts for 2 years this month now.... realizing i had the biggest set back where i had to quit everything 2 years ago in Oct and realizing i haven't even improved one bit... only have gotten worse over the past 2 years..... I've never felt so alone in my life. thanks for the kind ear everybody..... any thoughts or insight?? im so lost..... tennille

Hey yall, my number 1 most horrible symptom is the pure weakness and exhaustion like none other.... cannot be explained as the exhaustion comes from nowhere of course.... however, I have noticed that if I take 100-200 mg of tramadol in the morning, that i feel energy all day and i dont feel as bad.... in other words, it helps make me functionable. Im wandering if others have the same experience with tramadol (ultram). I know its sort of an opiate derivative, however its not a controlled substance, but potential for addiction and abuse (but very low potential). If you notice you feel energy and can handle a day after taking it, will you please share? Or any other thoughts. I've been experimenting on and off with it and am thinking about telling him my theory of is and see what he says, hopefully without him thinking im seeking pain med.... cuz basically, pain is not much of a problem for me with this disease.... just ocassionally. thanks for your input.... its deeply appreciated!! lov you all! tennille

I was studying pharmacy in college with a 4.0 gpa and 6mths from getting my degree and was going to be starting pharmacy school a year later, then i crashed in oct of 2009 and havent recovered since... just good days mixed in with the bad..... worked at CVS pharmacy for about 4 years while schooling, as a pharmacy technician (was a part time tow truck operator too, kinda sorta still am on my good days). However, i've had this disease for a good 9 years now.... just didnt know what it was till sept of 2010 when i went to vanderbilt. I loved what i did.... i miss it. tennille

Hi all: I live in TN, so unfortunately, i know nothing about CA... lol. But, i do have a therapist... as i need her at some times... other times, i just get on here and read, read, read..... as oddly as it seems, it provides a different kind of therapy for me that my therapist can't offer. However, she is great and i really like her. We just talk about my diesease, the frustrations of it, and she tries hard to understand. I think it's a great idea for anyone to find a therapist, phsyc, or support group if available...... it seems we need every 'weapon' available out there just to stay afloat. Hope you find a good one.... and if at first you dont find a good one, go on to someone else. I went through 3 therapists before settling with the one i have..... best wishes tennille

dani~ I dont you need to apologize for anything. These same thoughts go through my head as i read fb statuses myself. Yes, the nausea one, hit the nail on the head for me. NOTHING, and i mean NOTHING helps my nausea and vomiting... it is every day..... all day long...... sometimes i can't move, sometimes im bent over from it... sometimes its so bad that i could croak..... we've tried all meds, nothing works for me..... and mine, like yours, has been going on for a good 4 years..... i remember, when i could work, having to lay in the floor of CVS pharmacy (i was a pharm tech for a few years, while studying pharmacy).... i would have to literally lay in the floor for an hour at times at work due to the severe nausea.... i would be in tears and everyone, including myself, was like, 'what on earth is wrong with you?'.... and of course, at that time, i had no idea what disease i had been battling for many years. I've needed to vent for a long time. Im sick 24/7...... it's so unbearable at times that i want to explode. I read on fb too where a few posted how tired they were..... and im thinkging..... you have no clue as to how severe exhaustion can be with this disease and it's my number 1 symptom that is ever present and im always fighting. Every hour is a battle and im so exhausted. I want to do a million things and can't even accomplish one due to being so sick. But, i do try to be nice and understand others are sick too and our disease is very unfathomable to others who don't have it. Honestly, who would truly understand how sick we are, how sick we get, how horrible this all is, if they don't have it? I want to jump in my truck and go.... work..... do things with my kids....... but i can't...... 2 years into a deep potshole of small remissions of maybe 2 days here, a week there..... a few weeks here.... and i still can't come to grips with all of this. Sigh...... makes your whole understanding of life and God quiet distorted sometimes...... hope you feel better dani..... i sure feel your frustration tenfold, as every day is a frustration. I used to be hopeful of the good days, but then i have a few and then its like a cruel teasing joke after a day of few of good days, to wake up to the aweful sickness again and im like 'oh yea, i forgot i was sick, i forgot i only have a day or two of good days'.... it's like a 4x4 being slammed in the face.... and im reminded again of how sick i am, and nothing can seem to be done. yet, i am still thankful for those good days...... on those good days, i am shocked at all the little things that im able to do, that people never think about.... such as standing in line, grocery shopping, going out with my children...... i better shut up or i'll babble on forever..... peace be with you dani..... we all need it in so many ways. much love to everyone tennille

Hey y'all, havent been doing to well lately and had to stop the mestonin after 2 mths of using it. Been meaning to ask about the shakes for a while now. Im shaking alot, sometimes whole body, head, hands, etc... mostly head and hands. Its happening more and more and its quiet frankly freaking me out bad. If you get them, what can be done? Or, can anything be done? I have intentions of posting some replies to others, but have been in a bad state for a while.... but today, oh my, the shakes just wont stop, i can hardly function talking, writing...... standing..... ugh, this disease has wiped me out thanks y'all much love tennille

Unfortunately, this is one of my worst symptoms...... it happens in long spells as in months, then eases up for very short periods of time, or inbetween the two. I counted in 12 hours one day of urinating 32 times. And i dont drink very much either..... the more i drink, the more i go.... and i usually have more output than input. Ugh, i hate it direly, it makes living very difficult. Have no idea why it happens...... best wishes tennille

I also forgot to say, that during both tests, i was in the 'pass-outish' stage, was very symptomatic, and the tests brought on my symptoms more aggressively... i didnt pass out though.... but oh my was i sick, lightheaded and weak and dizzy and disoriented ...... ugh. tennille

howdy yal, My first tilt table test was inconclusive, meaning she said my blood pressure and heart rate were doing some weird things that in her 8 years of doing the test she had not seen results like mine.... whatever that meant, not really sure, cuz now due to my short term memory, i can't exactly remember what the HR and BP done exactly. Had another poor mans tilt table test that was done in less than 5 mins.... therefore vanderbilt refused to diagnose me as having POTS. Im glad some of you have wrote that even though a tilt table test can be negative or inconclusive, that it doesnt mean we dont have POTS..... cuz, well, i have my pots holes, and during those times, it is the OI, HR and BP that all act up just like it's 'suppose' to. Right now, i do think my 'pots' is on the downlow for the most part, i do feel im dealing mostly with the dysautonomia, mcad (although i think its under control for the most part too) and some other issues at the moment..... I always felt like i have pots, too many tell tell signs..... glad to know that i prob do have it anyways, its just docs and their testing methods arent always precise, and well, our bodies aren't always doing what we need it to do during tests, since this disease can be 'all over the place' so to speak. thanks for the post tennille

autumn: so sorry for not getting back to you..... my short term memory just ***** lately. We planned my first child.... i had been on birth control for about a year, at the age of 20, i stopped and was preggers within... id say days..... Our second one wasn't planned, but after getting pregnant with my first, i had no period all the way up till i got pregnant with my second which was a year or more after I had given birth to my first. Even after that, still no period for a number of years..... (and i had my tubes tied right after my second one at the age of 22)..... tennille

hey everyone..... i would have gotten back sooner, but i have really had some bad days and feel like i have been in a true pots hole.... days that i name 'i feel like death day'..... (i name my different days as to the severity of what's going on.... silly i know, but ya gotta have some humor in this disease to survive it..).... it didn't occur to me till last night that I am a few days away from my period, and then i remembered what one of yall wrote about it...... i totally forgot that i am normally worse anyways this time of month, but i do think the mestinon has worsened it, plus added to my headaches. So, for the past 2 days, i backed off to 1/2 tablet twice daily..... and the side effects lessened some, but i still remain in a bit of a potshole. I woke up this morning to having the feeling of almost able to say 'i feel pretty darn good'....which hasnt happened in a long long time, but it only lasted about 2 hours at the most and i have been in the bed sitting up since. I've promised myself to try to stick it out 2 more weeks at the very least, as, yes, i was so looking forward to trying this drug and fought so hard to get it..... i at least want to give it an honest chance and see if all this subsides. If after 2-3 weeks, if no improvement then i'll stop..... if im still seeing rays of energy here and there, i may tweak around with the dosage as we go. One other thing i noticed that was common said (when i searched on here about mestinon) is that i seem more loopy than normal, more confused and disoriented as normal. I have flare up like these, but not like this, this is different. My speech had really been difficult.... completing sentences are a huge task. It was really bad for a few days until i decreased my dose, when i decreased, these symptoms lessened a bit. As far as my headache, its ever present..... as in, i've literally had a headache non stop for 2 years.... what i notice is the differences of the types of headaches and i know the differences in them well. But the migraine came out of nowhere..... Im a bit dazed and confused myself right now anyways, so i better get so that my brain can rest, so i can rest... lol thanks everyone for replying so fast.... yall helped my anxiety to lessen significantly tennille

thanks! I actually just googled mestinon as a vasoconstrictor and got a whole other thread right here on the forums..... there were quiet a few that seem to contribute an increase in a not so normal headache or an increase in migraines. Still trying to decide if i want to continue on with the mestinon and see if this side effect subsides? I haven't had any more migraines since the other night, however, i still have some of it that just doesnt want to budge. I backed off my dosage too...... I guess only time will tell. thanks again! tennille