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Everything posted by hilbiligrl

  1. Ok... im no expert here, and im not sure if anything i say will help..... but i've had the severe breathing difficulties for 9 years now, that have landed me in the er many times, along with severe weakness/comatose state..... but always, that breathing was just.... unreal.... i literally would pant like a dog to be able to breath even a tad...... along with diagnoses below, i do feel i would fall under the hyper pots catagory, but for some reason, i feel like the hyperpots is not my main issue. Being from the pharmacy field...... i have tried almost every ssri, snri and tri cylcic out there
  2. Glad you found a good doctor to help you :0) that is always great news on here, as many are still struggling to find good docs who genuinely care. It took me over 8 years or more, maybe a good 9, in order to find my current rare case/integrative doc, who is amazing. He may not know everything about my diseases but he sure cares and we try everything. I had to fire my previous doc and personal friend of 10 years...... as that doc, the last 3 years of the progression of my diseases, well, because he/she couldn't figure me out, i was treated with the utmost ugliness and was then being treated
  3. I meant to thank everyone so much for all the advice on this...... I have actually wrote down all the ideas and im kinda basically using them here and there.... kind of a 'mixed idea' thing..... but, i've always been the person to be alll about brutal honesty, even with my children, especially with my children. By using all the good advice from each one of you in here, i have been able to take a multifaceted approach..... and using specific ideas for specific issues that arises or that i discuss with my daughter, as well as my son. Things are going better for her after I sat her down and expl
  4. i had found another article that might support cannibas use for mcad sufferers....... www.biochemj.org/bj/388/0465/3880465.pdf "Taken together, these results reveal the complexity in signalling of natively co-expressed cannabinoid receptors and suggest that some anti-inflammatory effects of CB1 ligands may be attributable to sustained cAMP elevation that, in turn, causes suppression of mast cell degranulation." That was their conclusion...... do i understand it correctly that it can be helpful in mcad or in an anaphylactic shock episode?
  5. Im not sure what ADA even is..... (sorry bout that)..... but i just wanted to say that while i was going to school for pharmacy and while working as a pharmacy tech at cvs ..... as i was worsening over the last year and half.... i had to take 3 different leaves of absence from work as well as I had to withdraw from 2 different semesters and another semester I had to ask all professors for an extension to finish my school work and some tests where i had been so sick..... I knew i was getting worse.... Good luck on the ADA.... i sure do hope some others can give some insight tennille
  6. very interesting..... looks like i may add it to my supplement regimen....... i seem to concentrate on my DYS and MCAD more than the OH itself..... how confusing at how many of these symptoms are the same for each disease or how they overlap.....
  7. thanks everyone!!!! Yes, 500 is better than nothing, no doubts there and with that i can pay for supplements and meds that i've not had money to pay for and have to go without for up to 3 mths.... I actually think the whole process from beginning to end only took just about 1 year and a few mths..... but they say I won't start 'getting the check' for another 6 mths, unless i qualify for SSI too and then i would get my payments sooner.... so maybe that's why they always say it takes a good 2 years. as far as advice..... i have no clue!! that's the weird thing about all of it..... i guess ove
  8. I am seeing an integrative doctor, he is my primary, he is also a rare case doc and is open to new approaches, even if they aren't accepted mainstream. I have wanted to try provigil or adderrall to see if it will give me energy. I've wanted to try them both, at different times of course, but i haven't yet had that talk with my doc. I will be talking to him about it on our next visit in a few weeks though. I am curious as to how many these type meds help with our type diseases and the relentless exhaustion on all levels...... glad someone posted this
  9. sue~ yea, it never occurred to me that gluten could be setting mine off, until i was ordered a gluten free diet about 2 mths ago and have had some way cool findings with it.... not a cure all, but improvements....... then i read the other day that gluten can cause the mast cells to 'set off'....... i was excited, cuz i could make the mcad and gluten intolerance connection thank you sue for your reply!!
  10. christy! doxepin broke my very severe cycle with mcad!! glad to see some confirming stuff...... (i got a bit excited when i seen you post that) and yes, while i took it, for 5 weeks i had no headache anymore or nausea or the breathing issues..... but had to stop taking it, as it was too much of a drug for me.... then i switched to the zantac/zyrtec combo....
  11. Ok.... here's the thing. Please take this seriously........ I have chronic DYS/ MCAD/ CFS.... those are the main diseases i have. Now, for years i have taken these severe 'attacks' that consist of a sudden onset of severely hard time breathing (the hard time breathing was always present, but these attacks sent them into a severe state like none other..... there was never any real true way to describe this inability to breath, other than, all i could do is lay flat and pant like a dog for either hours or days or in and out for weeks)..... also, with these attacks were/are severe weakness...
  12. Hi Aaron, I too have MCAD..... and chronic autonomic dysfunction (dysautonomia)...... i haven't been diagnosed with hyper pots, but i'm pretty sure I have it. I am one of the few that is super sensitive to antihistamines like benadryl, vistaril, etc....... i cannot take that stuff for some reason... it litterally has me climbing out of my skin.... I have not been diagnosed, but the diabetes insipidous..... id say i def have it. I use to urinate up to 40 some times a day, for years...... until i started my MCAD meds...... after being on mcad meds for a few months, i no longer have this prob,
  13. Dear Puppy, I have had the nausea for YEARS now..... constant.... day, night..... you name it. The first few years, i just dealt with it..... but it would be so bothersome that i literally would have to lay down in the floor in a ball at work (i was working at CVS as a pharm tech) and i would be soooooo sick that i couldn't move for over an hour..... and my co-workers know that i wouldn't let anything disrupt my working...... luckily, my pharamcist was sweet on letting me have phenergan anytime i needed it. I made it bearable at most. Years later, i find this place and figured out that naus
  14. I've been through alot.... and id say alot more than 90% of folks out there in the normal world.... just like the rest of us in here who have been through more than most out there..... but this disease(s) by far is the hardest i've ever faced.... and i face it every day, every hour for going on 9 years or more now..... it will always be the hardest to deal with..... as it begats so many issues that can triple and quadruple in so many manifestations: i.e. home life, family, friends, children, relationships, work, mentally, physically, socially, financially, and so much more.... and that's not
  15. I have chronically no appetite, as well a chronic severe nausea, for many years.......i can lose a good 10-15 lbs in a week...... if it weren't for marinol, id be skin and bones...... it's the only thing that works for me. If i could just get it covered, since it's a whopping 700 a mth..... ugh.
  16. thank you both so very much! Yes, i am still in the 'weird feelings' about all of this, but so very thankful at the same time. And Katybug, i have read that saying from you on other posts.... i keep forgetting it, but when i read it on here from time to time, i try to practice it.... i do think i need to write it down and post it in my fridge...... i do need to me more kind to me, as im awefully hard on myself already.... and then this disease and all. Thank you for that and it does help believe it not!!! I just have to remind myself of it (and yes, i was a work a holic too..... i mean,
  17. Just wanted to let you gals and guys that I received my approval letter today. I'm 34 and the judge voted in entirety for me being fully disabled. I never expected it, even these past 2 years its been going. I figured mine would be such an odd case. But, it was how i explained it to the judge how it affected me inside and out, who i am, what i was, etc..... and what it has taken away from me (the disease(s))...... my attorney said that was what got it. The judge truly believed every word i said, and he knew my educational background too and all. I'm very thankful, no..... im extremely th
  18. i had to quit work and school (i was entering pharmacy school at the time) all in one day in oct 2009. Took an extreme nosedive. Have been anywhere between 65%-100% bedridden since...... no matter how hard i try, i still can't work...... i help out with our towing business and on days i can function, i tow, work wrecks, be at the office for a few hours, etc.... that might be 1-2 days out of a week...... other days im home, propped up in bed answering calls and dispatching..... in 3 years, i still seem to only have 1-2 good days in a week, and sometimes not even that and very rarely maybe 3-4
  19. Oh yea... i forgot.... they prescribed me the transderm scop patch to place behind my ear... i think i put it on a day or two before my major surgery and kept it on for a good week, but i think i changed it every 3 days (i can't remember)..... with that, i didn't have ANY issues with nausea and vomiting at all!!!
  20. During years of being sick, i have been put under a few times....... (first 2 times were, 1. when i was 3 to have a tumor removed from left breast.... not sure how i done but from what mom tells me, it was a very traumatic experience for me...... i had no known illnesses, nor this illness at the time that i know of...... 2nd surgery was to sew my tongue back on at the age of 7... i had walked into my brothers path of him swinging and he kicked me in the mouth, i bit my tongue off..... mom had to find an oral surgeon to sew it back on...... not sure of all the details, but have no idea how i do
  21. Julie: i have no idea what causes it..... i wish i knew.... and yes, i forgot to say, my 'vision' (or whatever this is going on) does that too.... people's and even my face will looked 'warped'..... kinda like a scary movie warped face.... or well, just warped to the point you dont identify with them or who they are..... i mean, i can sit and stare at hubby and not believe what im seeing, feeling..... not knowing who he is and when the warped face thing happens and hubbs is big and tall, well, he looks scary and im like 'what on earth???'..... sometimes i start to cry..... sometimes i just la
  22. awe man, i do the exact same stuff..... everything you mention.... and yea, these spells come one without a trigger or anxiety or panic... they just 'pop' up and happen out of nowhere..... my poor kids have to finish my sentences and tell me the simple words im trying to say.... and oh my, how many times have i forgot their names and the names of really anyone i know???? too many to count!! thank you, both of you, this thread had pieced together/confirmed more stuff for me, and that always makes me feel better
  23. dani!!! yes, right on!!!! i do that as well, in addition to these spells...... julie, i do that too.... i can discern the difference between one of these amnesia spells and the depersonalization/derealization..... it's juuusssssst almost the same, but there's something 'off' about the amnesia ones and the severe confusion. But i do depersonalize and derealize due to the severe anxiety and panic issues throughout my life....... so glad you mentioned that dani!! great way of describing these spells..... or that's what it could be, but maybe the DYS/POTS changes them up a bit????
  24. Hi julie..... I saw this and was like 'ive sooooo got to post on this'....... i have these same spells..... and here lately, more frequently...... i can wake up some mornings and literally have no memory of days before and up to weeks before.... its just not there, no matter how hard i think and try to remember, it's gone...... scares me to death. And i have the 'spells' you describe.... i have even called my mom many times crying due to either im driving and all the sudden im lost and i know every road in my town cuz i am also a tow truck driver...... but i'll have to pull over..... and i h
  25. brethor!! i know within myself that my body cannot regulate temp AT ALL..... i hate this!!! No matter what fluctuation in the temp outside or inside, my body just can't seem to regulate anything or adjust to anything....... that's one of my biggest issues that i hate the most. Glad im not alone!!!! tennille
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