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Everything posted by hilbiligrl

  1. I haven't been diagnosed with pots but diagnosed with chronic dysautonomia..... but i have all the symptoms of hyper pots..... but i also, (i do have mcad, diagnosed) have been thinking the same thing.... wandering if my mast cells are doing the most triggering of symptoms..... im still trying to piece together my puzzle..... because no matter what im trying, nothing is still working and i've been down 2 and 1/2 years mostly bedridden..... ugh, this is getting so hard thanks for the poll.....
  2. I take asprin everyday, as soon as i wake up cuz i always wake up with one bad mega headache.... so i take a goody's powder.... if i take more than 2.... the breathin issues start up...... and other things. Many years ago before i was diagnosed with anything, i kept telling my old doc i fired, 'i think the aspirin in the goody powder is triggering my episodes (whatever the episodes are)' and she shrugged her shoulders and said 'nah'......... i still feel aspirin causes negative effects, first with the breathing.... but i have begged doctors for 13 years to help find me something for my headac
  3. Ok.... i've always wanted to stick to a juicing diet..... i started it once a few years back cuz i was sick and always sick obviously...... but i didn't get far with it. I have a juiceman juicer... the biggest one. Is this not a good product to use? And does anyone else in here have any advice, suggestions? Thanks rich for sharing this..... i do think juicing can really benefit us in many ways thanks tennille
  4. katy..... i do the EXACT SAME as you are describing!!!!!
  5. oh wow... i could totally be the poster child for irregular menstrual cycles..... (im 34, with 2 kids age 13 & 15)..... I was a late starter anyways, i didn't start my period til i was in like 10th grade. I would have my period for 7-10 days and then none for 3-6 mths or sometimes 9 mths or so.... i never knew when it would come.... so i could go only once or twice a year sometimes.... when i got married and got pregnant.... for a good 10 years i rarely had a period.... i am now only in the past year starting to pan out some to every month or every 50 days or so..... still i never know wh
  6. Thank you Bren I think one thing that stands out about my attacks that is different than most, is that i never have had any red rashes or whelps or swelling that i can ever remember at any time ever, even in my life without the attacks. Everything else, basically is so much similar or right on....... gradually adding symptoms from the severe breathing issues and weakness to those 2 symptoms always plus many more added over a 9 year period.....
  7. This stuff is way awesome....... i mean the knowledge of it. But it is waaaaay so creepy, yet amazing that they are recognizing these symptoms in animals as dysautonomia, yet docs can't even recognize it in human patients. Glad you shared this!!!! Pretty awesome stuff here tennille
  8. Hey all. I've been trying to piece together my 9-10 year history of these severe 'attacks'/'episodes' that I had been having up to the point of starting on mcad meds about a year ago. It seems my attacks where never thought to be anaphylaxis shock due to the fact that i never had any known allergies. So, docs never thought of it at the time in the er when i would be admitted over a period of a few days. (My doc now is going to pull up those records and see if they tested me at any of those er times for, is it the triptase level???? im sooo not sure on that one..... yall can fill me in on
  9. I started my menses today.... and yesterday i felt the worst i have felt in a long long time. I also had that all day long feeling that i did not feel right..... kept saying it to myself 'this doesn't feel right'.... 'this is not normal'..... i haven't had a day like that in a while... then today whalaaa! period. big hugs to you..... my brain ***** and my jaw is in sooooo much pain that i can't think straight...... you'll get past this slump love and hugs
  10. wow! that is interesting.... i like how you made each point.... gives me ideas on theories and confirms others for me. I have no clue on earth how to get out of a flare, other than to just rest. I like you, have tried everything under the sun and i still feel like death. totally clueless.... but im interested to see what others post sorry about your flare up.... i've been in a relapse since oct 2009 and it just isnt changing no matter what i try/do....... but im a fighter tennille
  11. Oh wow leize.... i had no idea you were going into surgery? Is this for a hysterectomy? You sound so much better these days, as if things are panning out, or that you have a better grip on all of this....... how are you doing? love ya dear tennille
  12. Glad you posted. I have been visiting the sites lately. I have not been worked up for mcad yet, but i respond to meds, etc..... to the point that my doctor has already diagnosed me with it. Yes, i too and trying to figure out which one is the primary disease and which ones are secondary for me....... as the dys and mcad and cfs seem all to be as severe as the other..... hmmm....... and most all of this stuff overlaps. Leaves one really scratching their head. I know hardly no one on here responds to cannibas questions/posts.... but i found 2 research articles from immunologists and cell bi
  13. i wasn't much of a work out person, but i've always stayed thin and in shape. I didn't go to the gym or do cardio, etc. BUT i WAS active! I was so active that i think it pushed me to my final break in oct 2009. I had a full time schedule at college, heading to pharm school, working 25-40 hours a week at cvs..... being the homeroom parents and doing parties, etc for both my children..... helping with the towing business, driving the trucks, working wrecks, pulling cars out of ditches and general tows. So i was always doing something and slept very little for many many many years. I was a
  14. Well.... 90% of the time my 'significant other' is very supportive. My disease very rarely starts an argument. But when i'm down for long periods of time then he will throw out some very smart butt remarks about me being lazy or sick all the time. His remarks are hurtful and sometimes he can be in this mood for a few days and then i not see it for a month or few. I am one of the luckier ones who has a mate that does take good care of me for the most part. But he can get mouthy and say means things about me being sick.... and it's always so unfair and hurtful. I'm pretty sure he says th
  15. omg yes!!! it's happened more in the last year or two for me. Sometimes I can't swallow for days. Sometimes i can't swallow but halfway.... it will get stuck in my throat..... hate this.... so upsetting. I knew a few here does it too, but it's more common with 'us' than what i thought. oh the myriad of symptoms......
  16. christy D~ i am thinking yours is the one, but it seemed that there was a doctor or pharmacist or both who had replied as well.... i remember replying myself (one of the few things i remember... lol). Seemed l like the thread was several pages longer though. But it could be my bad memory. thankful~ interesting how the same question is asked after lengths of time and we still get a majority in the healthcare field..... interesting
  17. whisper~ that's EXACTLY what one of the women pointed out!!! indeed!
  18. One of the moderators should remember that post. If they do, they may be able to find it and post it.
  19. I can't seem to find the post in the search. It stated something along the lines of 'what was your career before you got sick'.... something like that. But im not sure how long the search will go back to.
  20. actually, we did a poll on here, or it was another post just the same about a year ago.... it surprisingly had a huge number of folks in the healthcare field, vast majority it seemed. I worked in pharmacy before my last downfall that's had me down the past 2 and 1/2 years......
  21. i've waited to share this but here goes: My doc of about 10 years was not only my primary care doc, but also my friend as well. I trusted him/her. For years she was concerned at what was going wrong with me..... she/he sent me to every test she could think of.... all were repeated year after year...... she/he also sent me to specialists. Long story made short, this doc was very controlling, did not think outside of the box and never tried anything different than what protocal was taught to him/her. The last 3 years of him/her as my doc...... took a bad turn. His/her body language, they w
  22. i've been battling DYS for over 9 years, maybe more...... Since i have been left unfound and untreated, except for in the last year..... i have progressed worse each year, with more flares, more relapse, and increase in severity........ we are trying anything and everything under the sun, but to no 'real' progress.... just small progress here and there...... im a fighter by all means..... but no matter how hard i fight, the worse i get..... i haven't had any remissions since oct 2009.... and i struggled through school and work for the 2 years previous with each year getting worse..... I'm the
  23. I opted out of sleep study, but may consider it in the future. However, I would say I have had chronic ongoing insomnia for the past 12 years..... and honestly i think since i was a child, going through middle and high school as well..... I have tried every sleep med out there and even had higher than normal dosing, and still nothing worked. Nothing knocks me out or keeps me to sleep. Any and all sleep i do get, even during times the sleeping would do a 360 and id be sleeping abnormal hours for a few months..... i never ever felt rested..... ever. I think i've repeated that phrase to docs
  24. yes lilly! i've always been so excited about this place..... it took me a long time to find it, thankfully i came across it in oct of 2010 and it's been so relieving since then..... had i not found here, i would not be where i am today...... for so many years of unanswered questions, this place brought me everything under the sun...... it was the difference between living in total darkness (metaphorically speaking in different ways)........ feeling alone for that many years can do it's toll..... but finding here, wow...... i've never felt alone since...... and that is something I will neve
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