hilbiligrl

Hi Heather! Im sorta an oldie-newbie.... lol. I'm Tennille, 33, have 2 kids and live in the upper corner of eastern TN.... and have had this disease for 8 years. Only recently have I found a good doc to help me sort this all out and get some answers and try some new meds. These women and men are great here. Bella hit the nail on the head here with everything she said. Many, if not all of us are deep researchers, as we have to be in order to find whatever pieces we can find to help us understand more about our disease. A lot of gals and guys on here, the information they share, will piece together parts of my puzzle. I have learned so much, but one thing most of all.... this place is my safe haven and it is the only place were people truly understand what we go through. Message me anytime you like dear! Glad to have you aboard! best wishes tennille

Im really bad about taking meds, as i hate them really. And i hate to say this, but im really bad about correctly stopping them too. I've never had to wean off of an ssri..... as, ALL ssri's make me have some pretty violent reactions after i've been on them a few weeks...... so i stop cold turkey.... i've stopped all my meds throughout my life cold turkey (i hate pills, what can i say). Only Klonopin (which is not an ssri, it's a benzo) is the only med that i taper off of and very slowly. One of my old and fired docs stopped me suddenly without tapering and it was like the deepest pits of the bottomless pit itself for months.... the scariest long term experience of my life...... I've tried almost every ssri out there, never again. Klonopin works wanders for me, hence, why I am back on it, and doing better in that area. just my experience tennille

I have had headaches since i was a small child. Didn't seem right if I woke up and didn't have one. Then 7th grade came around and started my migraines with auroras, that lead to complete vision loss for up to 2 hours and vomiting for a good 5-7 hours. I had migraines, which are different from my regular daily headaches, alot from the age of 12 till after i had my 2nd child. They then lessened to only 1-3 a year. Now i have silent migraines (the blinding aurora but no headache and vomiting). But generally I have a headache every day of my life all day long all night long. Nothing helps. I take goody powders, which i know is a no-no..... but nothing else helps. I have no idea what life would be like without a headache. tennille

I've felt I had symptoms since teen-age years. But in feb 2002 or 2003 I came down with mono very bad plus at the same time some carbon monoxide poisoning.... woke up one morning feeling like the flu, stood up from bed and hit the ground like a ton of bricks. I was so so sick and paralyzed from head to toe, yet could feel such intense sickness and death like suffering that I just could never explain, and the weakness and exhaustion and so many symptoms. Never was the same after that........ tennille

Hey Y'all, I've had to sit on this one for a while..... this is my first and foremost symptom for the past 8 years. I describe this as NOT fatigue. For me, it's a feeling of pure weakness, severe exhaustion but from no cause whatsoever. I feel this way 24/7. I like some of the ways you guys describe, as i would agree, an 'exhaustion coma' could describe me easily, as well as, the 'bone crushing exhaustion'. The exhaustion is relentless most days, some days are only tolerable. As i said it is ever present. But, i do have severe attacks that at one min im up walking somewhat, then the next min i can't even walk, talk, stand, grip a pen, can't breathe..... that's when the severe weakness is felt what feels like inside my very cells and skin and insides..... so hard to explain. But as i once posted, i can't stand that docs (when i describe it this way) they generically put down 'fatigue' and that's it..... ugh, makes me wanna slap them! And as i said before, it's not fatigue, as i have to be doing something first initially, in order to be fatigued.... am i not right? Usually, during severe episodes that can last hours, days or weeks.....i lay flat, panting for breath, no strength to open my eyes or even speak.... no strength to move anything, not even a finger. It's as if im paralyzed from head to toe... usually crying due to the intensity of what i feel.... its treacherous and the suffering is unreal and unfathomable. However, when not in acute episodes, my days are spent very tired, weakly, no energy, exhaustion...... i have to lie down frequently..... or be bed ridden mostly. I do have some good days too, but as i said, the exhaustion to the severest degree is always ever present..... it has become a part of me, my odd friend, yet my worst enemy for the past 8 years or more..... something no doc seems to understand. I have to insist again and again that I AM NOT DEPRESSED...... im smart enough to know the difference..... depression exhaustion, is SO VERY DIFFERENT than ours.... so very different. I do wish I could figure out what my 'acute' episodes are though..... im thinking some sort of seizure activity, or is it mg, or is it mitochondrial disease or an mcad attack???? I have no idea...... but this stuff gets quiet scary for me, and i just hate it. My mind is rambling.... i know there was something else i wished to say but now i can't remember.... lol. Hope this helps.... as i have wanted to ask this very same question to everyone on here..... so glad you posted it!!! mucho blessings tennille

hey bella! I too, check my privacy settings almost daily actually. I don't like to be 'searched'..... and i keep a tight lock on all my settings. Looks like you might know more about the privacy stuff than I do though.... I may need to keep in touch with you so that i can keep up with any privacy changes! I admit, they have many ways of invading our privacy and weeding around our own settings. I refuse to do any farmville, application things, the hugs, hearts.... all that stuff, i turned off all of it. Today looks like a good day to review all my settings again I have to admit, there are times i have shut mine down, and i still think about it today, about shutting it down for good, as sometimes, i think it's gotten out of hand with 'keeping up with the Jones's' lately and well, seeing so many people 'living', well, it just gets me down.... cuz i can't 'really' 'live'...... you are a hoot bella! Glad yer on here! tennille tennille

hey y'all, I have an fb..... but, i happen to be a very open person. Most those that i talk to on fb know I have a 'rare disease' and get bed ridden alot, along with being sick alot. (and they knew me as a go-getter all my life too). I don't post it all over that im so sick, but it is in my info of what i have, as i would rather inform people of it, despite whatever reaction they have, than to keep silent about it. Several friends may bring it up on my wall, or ask me how my day or week has been or what it is I have. I usually just tell them in a nutshell, i dont get into intricate details cuz there's just too much, but i quickly sumarize it..... i might not mention the diarrhea from 8 am till 5 everyday (cuz i know its out there for others to read, and i do have some dignity).... but i mention my other symptoms vaguely. I guess what im saying is, i dont go on and on about my sickness, but when it's brought up, I talk about it openly, hoping others will learn about it, as, to me, the more people know about it and the more people i can educate about it, the more awareness there is of dysautonomia. But gals, dont take offense.... im a rare breed..... Im just open and weird like that.... lol. But, I am weird about my privacy too..... best wishes tennille

Tachy, I got your pm... i will bet getting back to you today. Thank you so very much for your reply via both ways! I wanted to add an extra question to everyone on it: Does mestinon help headaches? thanks tennille

I went for testing in feb of this year. Although the staff was super nice, very friendly and helpful, my doc was an arrogant know-it-all who insisted i was lying about several symptoms (and i had such high hopes and respect for this doc, cuz i thought he was passionate about helping us). My testing lasted but only 30 mins..... one where i breathed into a device for a few mins, which almost had me passed out on the floor and the other was a very poorly done poor man's tilt table test. (I've had 2 tilt table tests to come back inconclusive). I was initially told i would be there an entire day for various kinds of testings. Wrong. Tested those 2 tests and some bloodwork and then a 30 min arrogant lecture about how i was making up what my symptoms where and that my probs were due to lack of sleep????? Well, he did say that he did believe there were obvious autonomic issues at hand but couldn't diagnose me due to not having the results he was looking for. Im sure they do great work. But unfortunately, not only have I been humiliated by 'that hospital and the docs I encountered' there, once... but twice. I was so disappointed and heartbroken. Just my experience..... there are plenty of positive ones out there.... i just happened to be one of the few that was treated poorly.... but that's ok. I think if anyone can get there, they should at least.... i try to tap all bases that are available for me, whether it ends up on a positive note or a negative note..... at least i tried. Just my experience...... but again, many more on here have had great experiences there. For me, they just made me feel worse about myself. God bless! tennille

Rach, I have all those symptoms.... but i also have many more. I was tested twice by whatever the device it is that they stick those long needles into your muscle and zap it over and over.... they done my left hand,arm and left neck muscles. I tested negative for mg both times. One test i didnt like to repeat. thanks for sharing the info! tennille

Rach, thanks for your reply! It gives me hope.... but, at the same time, i have stomach issues as well. I just wander if taking either/or/both DGL and slippery elm would help with the stomach issues. But then slippery elm can hinder the absorption of meds.... as it coats the stomach and intestines..... i haven't tried slippery elm, but i think im gonna pick some up today. The DGL works wonders for me. If i have a raw stomach, i chew up 2 tablets and within mins i feel relief..... im out of that too. I guess im just thinking aloud. This has been a bad week for me too.... bedridden all week..... and my coping mechanisms just arent working.... thanks again rach! i cant wait to hear more!! tennille

Hey all. I have severe nausea with some vomiting around the clock. I normally, do not have an appetite.... either im too sick to my stomach, or everything i look at makes my stomach even more nauseous. I dont even like to drink fluids either.... when i do, i throw it right back up, so i drink small amounts throughout the day of maybe vitamin water (orange).... or if really losing the weight fast, i start up with my wheat grass shakes 3 times a day to help put something in me, as wheat grass does make me feel somewhat a bit better. In any typical month i can lose 10 pounds fast and gain it back fast, back and forth, according to if i have any appetite stimulants. Mostly, i never want to eat or drink..... too sick too. (and no, not depressed at all.... just the illness) best wishes everyone! tennille

My doc promised to do some studying up on mestinon, as ive been asking for it for a few months to try and see if it will help me gain back some life, as my worst enemy is the relentless exhaustion and weakness. He hasn't prescribed it to anyone, and he doesnt know much about it and doesnt feel comfortable prescribing it since I have tested negative for MG twice now. I was wandering if those of you that mestinon helps, would you care to post what good it has done and is doing for you? I had told him about this site and all the intelligent women and men who come from medical type careers, etc..... and told him about how mestinon seems to be a drug docs will try with various types of DYS. He wanted to visit the forum and read about what real people like me say about it here, so i gave him the web address and told him to read the DYS forum..... im hoping he will read the replies on this post.... keeping fingers crossed! thanks to all of y'all! tennille

1. The severe exhaustion/weakness mixed with an indescribable 'sick as death' feeling 24/7. 2. Severe/crippling nausea 24/7 also, some vomiting. 3. The headaches.... 24/7 also. 4. Brian fog/cognitive dysfunction to the max sometimes. (memory loss up to weeks at a time W/lots of confusion. 5. Urination sometimes up to 30-40 times a day along with diarehea from 8 am till about 5 pm...... That really doesn't even 'touch' it..... tennille

naomi! so glad you posted this! As I was just thinking how poorly my cognitive abilities have become over the past 2 years. I find that everyday, all day long, when talking i cannot find words anymore???? Even really simple ones. My kids notice it.... everyone notices it and its so humiliating, as i was always a straight A student in HS and college. Although im not officially diagnosed with pots, both tilt tests were borderline... i do have pretty much all the same symptoms. I will have to bookmark this and keep up with it!!! thanks so much for sharing!!! tennille

future hope: im not sure.... I am checking out the umda one right now and seeing what all it says. Hmmm.... now im confused? I'll wait and see what todd says on here? thanks for pointing that out! tennille

Todd~!!! Thank you so much for sharing this info. Im gonna look hard into it. Believe it or not, I went to the MDA.org websit and i looked up a clinic and there is one that is only 1 hour and 45 mins from where i live (it's in knoxville, tn).... Im going to contact my doctor tomorrow about getting me in.... plus im gonna call them tom!!! I'll have to let you know how things go..... im hoping like heck that they take my insurance. But i guess i'll find out about that tom. thanks so much again!! tennille

That's a great idea lieze!!!! When my kids dad left and married another woman (while we were married)... he has been 'disappeared' for 11 years now..... but right after he left... I found a roommate with a child.... she helped out alot..... that's definitely something to consider! tennille

Hey there! My ex husband (i still call him hubby, cuz we are a team sorta) and my parents always help me out. If i can't manage anything, even walking to the kitchen... then hubbs makes sure im fed and the kids are fed (he might would get fast food on my worse days or he can cook too). My kids help out cuz they are 14 and 12.... I am teaching them how to cook and my daughter is getting really good at it, so that helps. But we are really clean people so, like when you walk in our house it is clean, except for dusting, sweeping and vacumming. I always taught the kids to pick up and keep things organized and clean.... therefore we all clean up our messes as soon as we make them....... I do let the housework go for weeks sometimes... the laundry, i might do once every 2 weeks, with my kids help of course. The hubby cleans too, like the dishes, etc. I guess I got lucky to have all the help i need...... i am truly thankful, despite the agony of this ever present disease. I hope you have help, or can get some.... it breaks my heart that so many of the girls on this forum don't have help..... I wish i culd clone myself just to help others..... ugh. god bless! tennille

Sorry sue1234... i called you sarah! So sorry, but my brain is lacking here the past few months.... my cognitive abilities seem to be kinda deteriorating here lately.... i hate it.... but i meant my post to be to you sue1234! thanks and so sorry for my mishap! tennille

very interesting sarah and good job! You guys never cease to amaze me on how intelligent you all are on here. My mother has celiac and chron's .... im beginning to wander if I may have it as well, as one of my many myriad of symptoms is diarrhea from about 7 am till like 3 pm.... i notice it's worse according to things i eat.... or basically everything i eat, no matter if it's clean or not so healthy (like cake... lol). I have yet to discuss this with my doc as this is one symptom that I have not really got into, as i had a few others that were most important in controlling. Now, im thinking i need to address this, but to chicken **** to do so, as i just dont wanna go 'there'.... as it's too humiliating for me. Ugh.... i bookmarked this thread and the other yu posted on the triad of the diseases and the 'elephant' research team.... i'll be keeping a close eye on it. thanks for sharing! if it wasnt for you intelligent women on here, i'd be far gone by now! Thankful that you guys are here!!!! tennille

Im with future hope.... i just read up on the mitochondrial disease and i am amazed! Sounds like something worth looking into and will be the next thing I will give to my doctor!! However, there can be hundreds of different mitochondrial diseases from what i read? Wow..... I wander how a doc tests for this???? I would like to know more from anyone with it! thanks for sharing this Toddm! tennille

hey all, This one symptom, is my biggest and like one of the others had said 'my life in a nutshell'. For 8 years I have had the relentless weakness..... i told my doc it's not typical fatigue, makes me mad when a doc puts in my records 'fatigue' cuz it's not. I can feel it inside as being weakness, no energy..... as if my ATP energy pathways are stopped in process therefore my body doesn't 'make' energy for me, therefore i'm weak from head to toe. It can get aggressive to the point of paralysis or it can less intense, however, still making it hard each and every day. In my worst bouts of it, I was literally bedridden for almost a good whole year..... if I needed to go to the bathroom, i had to slid off the bed and crawl.... walking... just wasnt an option. And to accomplish that, is a major feat. I have never been able to get any doc to understand how this 'feels'.... they put it down as fatigue, but i have to be doing something first, right? for me to have 'fatigue'. It's weakness, inside and out and i hate it. It's my worst enemy. I have been begging my doc to put me on mestinon for a while and see if it might work for me. But due to 'passing' all mg tests, he wanted to look into mestinon for a bit first and he actually wanted to know this site's name, cuz i told him many others on here have used it successfully, yet they dont have mg. He is suppose to be visiting here and reading up on some stuff. The weakness can almost feel like death, or a plague...... it's relentless every day.... even on my good days. It's the one symptom that is always ever present. I wish i knew what caused it...... just my thoughts (as my thoughts and mind isnt working all too well this morning.... ugh) best wishes to all my fellow weak ones out there! tennille

awesome! Thanks for the info.... i am totally excited to print this out and take to my doc! thank you so much! tennille

Bev, You are quiet welcome! Im glad you got it done! Any time dear! tennille