hilbiligrl

oh my, i havent' been to mass in months and months (thankfully my parents take the kids for me, as ive been way to sick for so long)..... unfortunately, when i am able to go, i remain sitting at all times.... if i keep standing up over and over, i throw up, pass out or get so very dizzy and faintish.... not a pretty sight at mass..... i never thought going to mass could be so challenging with this disease???? but oh yes... it is, as are most things! hope you made it! tennille

hi kc: i was prescribed 60 mg 3 x a day.... but i started off on one half tab, and have just worked up to a full tablet twice a day..... seems like since i increased it, i've gotten worse. My doc doesnt know much about this drug, it took me 4 mths to talk him into letting me try it to see if it would work for me, as i seem to be in the more unable to function catagory. I haven't talked to my doc yet, as i told him i would call him in a couple of weeks and let him know how i was coping with the side effects and all. It's due time i call him, but i think he and I are in the same catagory as in, we are both experimenting to see what works and what doesnt. Im thinking of cutting back to half tabs again and seeing if that makes a difference. I too have noticed an increase in 'loopiness' (confusion with disorientation) as well as shaking all over (but i think that might be from taking too much phenergan, as taking too much can make you shake.... but not sure if the mestinon is contributing to that as well).... so yea, over the past few days, my symptoms are worse...... i did however, take a 2 day trip from here in tn to florida to show my kids the beach for the first time and it was a 10 hour drive both ways and we didnt stay the night..... not sure if that totally set me back or what...... thanks kc for sharing that..... i will cut my pills in half and work with that a few days and see where that gets me... maybe 60 mg is just too much for me?? thanks so much again..... i don't feel so freak outish now..... cuz i was kinda losing it and i... just dont lose it, ya know? tennille

I've been on mestinon for 2 weeks now..... at times, i think i feel energy for the first time, like a tiny ray of light...... but at others i feel im crashing worse. My headaches have increased significantly and the past 2-3 days i am in a very bad 'pots hole' (i guess i culd say that).... today, i feel worse than i have in weeks and im getting desperate.... feeling so very sick and weak as i normally was. (not the side effects, as the side effects of the mestinon are dying down a bit adn are tolerable now somewhat)..... it's just, i feel like i have took 4 steps back from where i was or something........ I think i may have to force myself to get to the doc for a shot to kick the migraine out as it's lasted for 3 days now. Should i tough this med out for another week or 2? as, 2 weeks in, i can't tell whether or not its helping..... does it take a good 3-4 weeks before one notices that it helps?? any info is appreciated thanks so much, as the suffering these past 2-3 days is intense and unbearable....... tennille

I havn't had a full blown migraine in many many years and last night I had one. It started off as usual with the aurora that completely blinds me, then 45 mins later the pain and vomiting started..... but, keep in mind, in many years i havent had the pain and vomiting, just the aurora and now all the sudden i get the whole deal. Is it possible that mestinon could contribute to this? many thanks tennille

enko, yea, 5-7 years.... it was weird, but you could say that i never complained.... i always thought it was because I had my first child, breastfed for 9 mths.... then a while later, getting preggers with my second child, then breastfeeding her for 6 mths.... and it was quiet a few years after that, that i didnt have any either.... usually though now, my first 2-3 days are morbidly heavy and hard to get through now..... sometimes i wanna take that pill that makes you only have 1-3 a year i think, but then, i dont think i can due to the migraine and aurora issues.... plus i feel like i shouldnt mess with mother nature either..... tennille

Hi all..... Not sure if this helps with anything, but I started my period in high school for the first time and ever since, i would only have one about every 3-6 months..... Mostly just a few times a year. After I had my first child at 20, i didnt have a period for a good 5-7 years (had my second child at 22 and had tubes tied then)... still no periods..... they finally started coming back again and only this past year and half has it actually started to pan out to a 35-60 day cycle. Im still very irregular, but no complaining for me. Bottom line, i've never been regular and I've had far less cycles than what I should have. I also cannot take any birth control to regulate them due to my vision auroras and migraines (birth controls can increase them you guys!)...... so i just allow my body to do whatever it wishes!!!! lol...... just my 2 cents.... tennille

Pat, Actually no one in any er has ever done an eeg..... even when i was in the hospital in a paralyzed state for 3 days... they done everything else, but never an eeg. It wasnt until i went to vanderbilt in Feb that the specialist there brought up the fact that my attacks could very well be seizures..... It is very much on my agenda to get one done during one of my episodes...... if i can get the courage to go to back to the er during one of them thanks Pat!!! tennille

todd~ well, im a homebody by heart and i've lived in Kingsport, TN all my life. Not a big city, but not a very small town either. We all just kinda know each other here. And, well, our sole income is our small towing business ..... so, we kinda can't leave here since we've had the business for 17 years (and yes, i actually tow and work wrecks and all that stuff on my own.... i like big trucks and challenges ).... and well, i love it here, the seasons are wonderful here and there's not hardly any real crime here..... pretty safe here (knock on wood).... plus, if i get better, i wanna go back to pharmacy school (we have one here too, plus a medical school).... and the pharmacy school here is 20 min drive friedbrain~ I have never been able to tell what triggers these attacks..... i have them often for years now. It is shear torture. It started with me delivering newspapers, catching mono (a severe case of it) and carbon monoxide poisoning from the car i drove while delivering newspapers. I was really sick, woke up one morning, got out of bed and hit the floor like a heavy brick..... that was my very first attack..... and once i got to the er, they said it was mono.... that was 8 maybe 9 years ago..... bella~ thank you so much for your thoughts and prayers.... yes, i do believe in God; however, enduring the worst part of this illness these past 2 years has shook my faith to its entirety.... and i was someone who read the bible daily, prayed morning, night, all day long.... was raised i church and have raised my children in church.... Sometimes, i find i cannot pray, no matter how hard i try...... that is usually when im the sickest...... for a few months, i no longer believed God existed.... i could not fathom the idea of so much suffering and agony, and i could not fathom God putting me through this, or putting others through this.... this disease is unreal..... but after a few months I started seeing things differently..... im a good speaker and i speak out boldly....I would love to be an advocate for the rare disease association (or whatever they are called) and wish i could speak before med students (as my new doc is also a professor at our medical school here). We are having it tough, as we didnt have medical insurance and hospital bills for an aorta replacement are astounding...... plus the economy is slow and has effected business greatly...... plus, hubby has some complications but still works 24/7.... when he's down, then i do the towing.... when im down, he does the towing.... it is honestly sometimes funny watching us 2 sick people helping each other and running a business. I've never endured so much..... i feel tremendous guilt as a mother of 2 who physically cannot do much for them. I am ever so immensely thankful for my parents, sister, brother and his wife who help me every day with the kids (they are 12 and 14)..... i have settled on the fact that, when i can't pray, it is the prayers of others who get me through...... Bella~ you have such a huge heart and you are indeed such a blessing..... and yes, im am so so so thankful for everyone on here.... this forum is priceless to me For 8 years i felt alone...... when i came here, I no longer felt alone anymore.... lots of love to all of y'all tennille

Well, my old doc of 8 years.... she just wouldnt do anything anymore.... ive had mri's, cat scans, bloodwork, this and that over and over and always nothing shows up. I finally fired her in nov.... and submitted my case to a rare case doc on our area and he finally accepted me in late dec.... started seeing him in jan.... we havent yet done any more tests, except for vanderbilt, who done 2 autonomic tests poorly in my humble opinion. Mostly my doc and i figure one thing at a time, cuz for one, hubby had open heart surgery in feb and well, he's in late stages of heart failure, so these past 5 months have been **** on earth with so many doc appts for me and him and all the stress. I do copy stuff on here and take to my doc and he always looks into it and we discuss everything.... he's really good and it seems he believes in me and i believe in him...... he's an integrative doc.... i really like him and although things are going slowly, he listens and i can see it in his eyes that he really wants to 'fix me'. In the upcoming months we will be getting into some tests and work ups, mostly from what i find out on here and a few of his own suggestions too. I think my new doc wanted to 'get to know me' before he started some mega testing going on... so, im just patiently waiting and trying new meds to see what works and what doesnt. But yea, hopefully we can start a battery of tests soon!!! Does that make sense??? As my brain fog is horrible too.... ugh, dont you just hate that?? Last week i couldnt speak words and sentences.... it was aweful trying to talk to anyone!!!! lol.... Oh, and the sense of humor... oh my, i live solely on humor and laughter and sarcasm!!! That's my best medicine..... or else i go to that dark place that i don't wanna be in.... tennille

Unfortunately salt does nothing for me that i can tell. But, im not officially a Pots girl.... my tilt table tests were inconclusive and done poorly. I do have DYS. Water also does nothing for me. I seem to have POTS spells though with the heart rate, bp fluctuations and standing issues.... tennille

Bella! Well, im quiet partial to east tennessee, what state are you in?? My 'seizures' go like this: they come on almost suddenly, and when it hits, i literally fall into a paralyzed state from head to toe.... i have to lay in one certain posistion, usually on my left side.....i cant move, speak, communicate...nothing. Cant even barely open my eyes.....cant barely breath (as if my diaphram no long works or is too weak to work or not getting proper signal to work as it should).... not only am i paralyzed from head to toe for hours and sometimes days, or in and out of that state for months, but I also get a feeling of 'death' and 'utter, sheer suffering of some type of sick feeling that i seem to be able to feel in the very cells and tissues of my body inside and out. I also feel pass outish, as if im going to black out at any moment. I never get scared, never.... but these attacks, oh my.... talking about sheer terror and horrific. Usually the tears are flowing and i am mentally aware of everything, but it's as if im a prisoner in a shell of a body with no way of communicating....... i can get numbing, tingling, burning yet icy feeling in my arms and hands..... sometimes my hands draw in..... sometimes i shake uncontrollably. The thing is.... my doc says get to the er so we can check to see if it is seizures....... but im scared and have been made fun of by emt's and nurses and docs.... and i get this everytime 'get up, we need you to sit up and talk to us!'... that's what docs and nurses say when i go..... well, if i could get up and talk and hold my head up THEN I WOULDNT BE IN HERE WOULD I?????? I have been treated so horrible by emts, docs and nurses for so long, that i just am too scared to go to the er anymore...... the last time i went, a male nurse kept getting mad at me because i couldnt move or communicate, so he started yelling...... if i wasnt stuck in a paralyzed and an unreal exhaustive state, i woulda sat up like he asked and punched him in the face for being so cold and rash...... I had another bad 'attack' last week.... maybe 3 actually.... but still yet, im too scared to go to the er cuz i get treated very badly every time i go. lol, i wrote a novel..... sorry bout that tennille

Chaos, Wow, i could not imagine having a 5 year old with these issues! You are brave! I don't have much info to offer, but heat is a dead killer for me. I can't be out in it more than 5-10 mins without getting freakish sick, heart fluttering, pass outish, weak like death...... hate the heat. I will have to say though, my 'progression' has been up and down these past 8 or 9 years..... I can have short periods of what i call 'remission'.... but overall, i have noticed each year gets slightly worse than the year before for me. I see myself becoming more less able of doing things each year. These past 2 years have been mostly bedridden for me, and im a go-getter, so this is hard for me. But don't let that scare you, as it seems many here do get better, and of course, many don't. I have made minor improvement since I fired my old doc and got accepted as a patient with a rare case doc in our area, he accepted me last dec and with him i've made small improvements.. sometimes a step forward and 2 steps back, but im glad i have a doc who will try different things..... I am hoping, with his help, that i can slowly improve still, and i believe i will... .but it will be a long and drawn out process...... Think positive.... or at least, try too.... hugs to you tennille

Bella! You are such fun on here! I didnt' realize the supplements could bring false readings... i will make sure i stop them in due time for future testings!!! Thanks so much for pointing that out, cuz i wouldnt have thought anything about it. It seems that i am on a cocktail of things now! I do need some diagnoses.... but things are going slowly..... i have a mind to write down a list of what i need to be tested for, that way my doc and I can get busy the next time i go to see him! Im not giving up, and as todd says, keep going, keep trying, keep searching...... love your posts bella!! they make me smile! tennille

Kabers momma: I've been following your post about our daughter.... as i was very sickly at her age as well. Also, we had a situation were my niece was born at 1 lb and 3 ozs...... she was in NICU for almost a year, had many failed surgeries and died several times but was shocked back..... in the end, doctors from the hospital and docs from another nicu at another local hospital were fighting over what to do next cuz niece had an illostomy bag (cant remember how to spell it)...... finally, my sister basically grabbed up her baby and drove 7 hours to vanderbilt... they done one surgery and she was fine ever since..... so i can relate... sorta..... i know that is off subject..... just know that you arent alone and even though some of us havent posted, like me, do know that we are thinking of you and your daughter, as well as praying...... when i cant pray, it is those prayers of others for me that gets me through..... at least, that's what i like to believe...... keep your chin up!!!! You are doing a great job with all of this!!! hugs to you and your daughter! tennille

Hey bella! I've not been tested yet.... but i suspect and so did vanderbilt, that I could be having seizures. Hopefully i'll be tested i the upcoming weeks/mths to see if i do. I have 'attacks' that seem to be only described as seizures..... I know that doesnt help, but it is highly suspected for me...... hugs!!!! tennille

Todd~ thanks for the quick reply! yes, it was UT who declined my insurance.... actually she said word for word 'we do not accept or test any new patients with BlueCare tenncare".... so yea, i was shocked since UT is a research center..... so now, im not sure what my chances are, but im not giving up on trying to find someone...... this im going to discuss with my doc. Oddly that i am taking, er, well, i was till a week or two ago.... taking the coQ10..... I was trying to go off some supplements and a few meds in order to gear up for this mestinon that i started on friday. Im going to slowly add my supplements back..... how many times a day do you take the coq10? Funny that my doc, who is an integrative doc, talked about some 'in house' meds that they mix and put together in their office and would give it to me in their office that would target my symp and parasymp, as we both just know they are very out of whack...... we talked about that 2-4 mths ago and we haven't yet done it.... looks like i will ask him aobut that and see what it was they were going to try on me...... now im really curious...... thanks todd for the info! tennille

bella mia and todd: Bella~ i love your posts, as they all make me smile, you have the humor that i have!!!! Todd~ I've been working on trying to find a facility to test me for mito-disease.........i have govt insurance and i called the MDA and no one, so far that i have found, within the MDA 'system' (in the state of TN) will accept my insurance in order to get tested. I've still yet to discuss this with my doc, as i won't see him for a few weeks but his nurse calls me alot. I wanted to ask you, Todd, what meds are useful for mito disease? Also, do you know if mestinon will help with mito, or affect it at all? thanks a bunch!!!! tennille

Actually, he's my primary care doc. I went through 8 years of no progress with my old and very critisizing doc, fired her and submitted my case to my new doc, as he is a rare case doc and no longer accepted patients. He went over my records for a good 6 weeks and called and said he would take me in (that was last dec). He is an integrative doc and treats the whole body, mind, spirit. He does conventional and non conventional treatment methods and he is also a professor at our local medical school. It has taken me many months to get him to agree to letting me try it. He had never prescribed it before, and since i tested negative to 2 MG tests, he didn't want to prescribe it. So, he got on here and read what those on here had wrote about their success with mestinon. He told me he would research it first and let me know. I got a call from my docs office this morning telling me that he looked into it, and it's worth a try and that it was already waiting for me at walgreens. I was persistant about trying it.... but i knew he needed to feel ok about it too, so I was patient and allowed him time to look it up and read about it on here. Im so grateful to have found him. Here goes my next experiement! tennille

hello all! Im getting ready to start mestinon..... I wanted to ask those who have taken it and who are on it if you have any advice for me while starting it. Are there any ways I can keep the GI issues minimal if possible, such as maybe taking slippery elm and DGL (not at the same time with the mestinon... i'll be doing them hours apart)..... My doc started me out on 60 mg 3 times a day. Anything tidbit of advice is needed!!! Thanks so much in advance! tennille

Hi Y'all, I have noticed that since i was a child, that would get these intense and powerful brain zaps that go up into my brain usually starting at the base of my neck and shooting upwards to the crown inside. They literally bring me to my knees, intense pain, as if someone was hammering an ice pick up into my brain but with an 'electrical' type feel to it as well. It usually lasts a few secs to a min or two..... I thought they were normal growing up, but I am noticing and increase lately and it just hit me that its probably not normal. Does anyone experience this?? thanks! tennille

Sandy and Lenna, thank you! Sandy~ i was a pharmacy tech for 4 years (was heading to pharm school, but got massively sick and had to quit everything in oct of 2009)...... so yes, those programs are what i was looking for, and i called several pharmacies but several of them acted like all weird as if i was a drug addict... a few wouldnt even talk to me about marinol, said that they didnt have it in stock and hung up. Im gonna call the pharmacy I use to work at and talk to them today. Lenna!! I had NO IDEA that mestinon and marinol worked these ways! Very very interesting! As regular cannibas helps me TREMENDOUSLY, but its illegal and hard to find and well, i just dont know where to get it. I guess i shall be seeing if the marinol works.... if it doesnt then maybe the mestinon will???? I supposedly don't have true POTS..... both tilt tests were borderline, both were done, not so correctly, but I have dysautonomia (generalized i suppose). Hmmmmm..... very interesting. Thank you for adding that tidbit!!! best wishes, tennille

Well, im not making any progress at getting better. I want to try mestinon, but my doc just wont do it yet. He called today and said he would rather try me on marinol first and see how it does. No meds seem to help me... my nausea is crippling daily, some days i vomit for hours but the horrible nausea is relentless and always present 24/7..... plus we think it might help with many other symtoms, as, i take the 'real stuff'.... and he knows that i do.... and it will knock out 90% of my symptoms after 1-3 tokes..... he has no prob with me doing it at all.... Also, when im an attack where it's like a long term seizure and i can't move, walk, talk, nothing but lay in agony, suffering.... well, its like death.... if i take 1, 2 or 3 hits... within 5 mins im up walking and talking and normal..... he and i keep discussing how it makes me 'work' right again.... weird. If i dont have any, well, if i have an attack, it can last weeks and it is unreal suffering..... i dont get scared at anything, but when i have the attacks, i get freaked out scared cuz it literally feels like death is near..... sorry, my cognitive function is very poor these past few weeks..... ugh Im glad i have a supportive doc..... Oh, and my insurance won't cover marinol either.... for a 30 day supply, i have called around here and the highest price was 700 some dollars.... at the cheapest $425..... It would cover it if i were a cancer patient..... but i am not a cancer patient.... its just my nausea is quiet unreal..... everything we have tried hasn't worked..... Ugh, my brain is totally out of whack today......

I am so sorry to hear this. As a mother of 2, i could not imagine having to watch my child endure this.... my heart aches for you both, as i know all too well how crappy docs and er's can be. Stand firm and take charge for your daughter..... if you lose your cool, well, hey, sometimes we all do in times like this.... I know i would have lost my cool for sure in this situation. Wow, i just don't know what to say, it's like im so appalled that i just have no words.... im so sorry..... I will be praying fervently for you and your child...... and the doctors too!!!! My heart and thoughts are with you, tennille

Im looking on the internet for prescription assistance for marinol..... my insurance won't pay for it and it's now my only option to try for now..... do any of you know of marinol prescription assistance programs that actually work? Not finding what i need on the net, unless im searching it wrong...... thanks tennille

Hey Heather! So sorry you are having it rough. Im having a rough patch myself (as it's common to have good days/bad days... good weeks/bad weeks.... and so on and so forth). I have the same issue as you for a good 8 years.... that rest that i sooooooo feel i need, no matter HOW MUCH i rest, i just DONT rest. If i sleep, i never wake up feeling energy, refreshed or rested. I usually feel much worse and much more exhausted than when i went to be previously. No matter how many naps, or how long im bedridden (this bout for a good week or two)... i still dont feel that my body has rested. I used to go go go all the time. I was going to pharm school, straight A student in college, tow truck driver (my hubby owns a towing business now for 17 years) and doing all kinds of stuff, but a bad spell hit again in oct of 2009 and ive basically been down since. Anyways, you will find that insomnia is a biggie on here. You could say that I have had chronic to severe insomnia for a good 10-12 years now, and no med helps. It's real crap, when you feel so so so so tired and you never can sleep anymore, cuz usually, thats when i feel restless..... so feeling tired, exhausted to the gills, almost in an exhaustion coma, yet not be able to sleep and also have to deal with 'that intense restless' feeling..... well, it's just overwhelming. I know how you feel...... Hoping you get better fast! Just remember, if you have any question, feel free to ask on here! Someone always jumps in to answer! best wishes!! tennille