hilbiligrl

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.....

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 headaches which are daily, all day long...... but no one will put me on anything..... so i keep taking the goody powders.... and yes, i know all about rebound headache, so i really watch how much i take and how often during the week.

But my stomach can't handle nsaids, and im sure the aspirin isn't helping either. But how many times do i have to beg doctors to help me with the headache pain in order to get off of the aspirin???? ugh!!!!

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

Oh yeah, I forgot that I get one other weird thing during these spurts of choking...sometimes when I try to swallow, I'll get about half way through the mothion of swallowing and then I'll get "stuck" like my muscles stop receiving the message to keep swallowing. It lasts for a second or two, then, my muscles will resume the rest of the motion. It is also worrisome.

katy..... i do the EXACT SAME as you are describing!!!!!

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 when.....

I guess it's just the uniqueness of 'us'...... i'm thankful i don't have them as often as others..... ha ha

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.....

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

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 the correct test for it).

But what I would really, really, truly like to know is how you describe your anaphylaxis shock (not any due to a known trigger, such as peanut, etc, but ones that are due to the mcad and an unknown trigger is at play).

I know from the beginning, mine started with just 2 or 3 symptoms..... severe inability to breath for no reason and severe weakness to the point of being comatose/paralyzed and unable to communicate because i was focusing on my diaphram and breathing and panting like a dog the whole time. Of course, over the years, more symptoms would jump aboard these attacks.... maybe as the mcad got worse?

But, it would help significantly if i could hear from you how/what your anaphylaxic shock episode felt like and if you would say that it was a huge intense amount of suffering with it, along with a feeling you were dying (for me this IS NOT ANXIETY... but a true deep feeling like my body was closing up and shutting down on itself...... yet the docs could find no answer over all these years to these attacks of mine).

Ok..... if any of you can help.... I WOULD BEEEE SOOOOOO GRATEFUL!!!!!!!

Thank you all!!

tennille

Excellent news!!!

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

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

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

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 biologists about cannibas effects on mast cells in which they say the cannibas/thc suppresses the mast cells..... which could suppress an attack. Very interesting stuff. Gonna take it to my doc and see what he says.

Thanks for posting.....

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 go go go, do do do type person.

In HS i was in marching band, (and concert).... i played drums and all percussion..... i played softball for a good 6 years or so but not after HS...... rode horses....

So, as in working out, i was always too tired after everything i had done each day or all week..... i did take a period where i worked out on my bowflex 3 days a week and done the treadmill 3 days a week (it was right after a crash and i had slowly gained strength and little energy to start working out.....) I done that for a good year, but i was always saying 'but i still don't feel good, i still feel so tired and weak and my breathing was still so horrible'.... i just never felt any better.....

i know that was off topic, but sometimes anything that is posted can help bring more understanding about us in some way

my 2 cents....

tennille

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 these things out of 1. ignorance 2. he, nor anyone can truly understand this unbelievable intense illness 3. he's a man..... 4. he gets frustrated and tired of it too (if he only knew how tired of all this I was.... if he only knew).

So..... that's about my scenario. He knows if he 'attacks' my illness that it really affects me, so he doesn't do it much, but even at that, one time is too much But he's good about getting most of my meds and bringing me home something to eat if there's nothing here that i can stand up to fix or grab.

He's 58 and i'm 34, we've been together for about 11-12 years, he is not the father of my kids, but he's been very good to my children and has always provided where their biological father never has. However, I seriously, very seriously, don't think a man my age could handle this disease.... a man my age to stick with all this would be a rare find for anyone my age with this disease.......

One more thing to point out: my SO has anger issues. So sometimes he like to throw temper tantrums...... which does not help me at all. But he has worked on his issues and I have worked on his 3 year old 'fits' not bothering me..... so as long as he doesn't lay a hand on me and all..... but his mouth can be quiet vicious at times just because something didn't go right for him.

I have no idea how to get it through our SO about how severe we are. I doubt we ever can.... other than pray for them to understand, etc.

Do you have any doc that understands the severity of your disease that your husband can hear from the doc's own mouth how band this all is? I took SO to a few doc appts with me, which helped him some. But im a very independent kind of gal and i never want anyone with me at doc appts, etc. I'm a bit of a loner...... lol.

Hope this helps in any way Hang in there lilly

tennille

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......

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

I wonder if it is because people who work in healthcare, and nurses especially perhaps know that doctors are fallable. So many here seem to have been incorrectly diagnosed at first. Perhaps healthcare workers have more confidence to know that the initial diagnosis does not quite fit and have the confidence to stand up and ask to keep looking or a second opinion!

whisper~ that's EXACTLY what one of the women pointed out!!! indeed!

One of the moderators should remember that post. If they do, they may be able to find it and post it.

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.

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......

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 way he/she talked to me, and just looking into his/her eyes, i could tell, i wasn't being believed. During some acute attacks, i would lose weight so fast that it was scary, i was accused to taking meth..... i dont even know what meth looks like or where to get it.... i was then forced to take regular drug screening tests... all of which i passed..... nonetheless he/she was always judgemental, condenscending, sometimes very rude and very controlling. I asked to be sent to vanderbilt and this doc refused..... .so i had my family to take me against her wishes..... came back with a diagnoses of 'autonomic dysfunction' and doc said it was 'absurd' as doc had never heard of such. Nor would doc agree to consult with vandy. I told doc, not a problem (on my last visit) and that i will find me another doc who believes me, who doesn't accuse me of things, and who can think outside of the box and that he/she was fired.

Well, he/she got so mad that i was sent out a registered letter stating that he/she fired me. What a shock...... could he/she not stand the fact that i stood up for myself for the first time.... or was it that plus an ego trip...... i wanted so much to fire back a letter, but then decided, it wasn't worth my energy or time to even think more upon the matter, as i had already submitted my case to a rare case doc and was waiting for his reply.......

thankfully, my new doc, an intergrative doc and a professor at our local college of medicine, researched my long medical history and took me on, even when he refused to take any more patients the previous years and still doesnt take any new ones on.

I could have wrote back and said, thanks for the letter but i already found my doc before i even fired you first.... but well, that's childish.

So..... i've been there, done that. I will say, it was very traumatizing at the time, and it was traumatizing for quiet a long time after. It's been a year since, and i never think about it. Im sure one day, someone will make him/her feel exactly the way i was treated and made to feel. I believe in karma.

Try to find an integrative doc.... they have open minds, take various approaches, instead of just conventional methods..... It took me over 9-10 years to find a real truly good doc who wants to fight this along with me...... i've had him for over a year now and still am thankful every day for finding him.

good luck!! don't let it bring you down!!!

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 only one i know in my area with what i have, so i have no clue as what to expect...... I know i have always felt sickly and weakly since i was a child.... but i have an extremely high ambition where i push myself to the extremes....... but since i came down with mono/carbon monoxide poisoning in 2002.... ive went downhilll since never, ever an uphill

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 for a good decade now..... or longer. Physically, mentally....... never did i feel rested even if i fell into a deep sleep which might only happen here and there, but not often.

However, I have noticed for some reason, im really not sure.... but since I started on the Klonopin and the mcad med regimen..... and switching between lunesta and trazodone, so as not to develop a tolerance..... I started sleeping of an improvement of at least 55% (guestamating an average)...... I was determined to completely come off of lunesta, as i want to be on as less 'chemical' and 'controlled substance' stuff as possible. I now, instead of taking my klonopin at 7am and 5pm, i take it at 7am and wait until 9pm and take it with 50 mg of trazodone, some nights needing 100mg. So, i've been off of lunesta for some time now. Some nights, no trazodone (i never sleep good those nights, but i try to do without some because they cause even worse headaches for me upon waking and we haven't gotten the 2 or 3 years ongoing headache at bay yet).

I feel inside that the klonopin has made the most impact on my sleep, as my mind never stopped racing with worries, anxieties, stressors, it's like i never could shut it down, etc.... once i started the klonopin i did notice within a few weeks i could actually tell my doctor.... i feel as if my body is resting for the first time in 15 years...... maybe my whole life. So, an impact like that, is an impact noteworthy.

But i think starting to understand and control the mcad had something to do with it too im sure.....

right now, i still have about 3 bad days of sleeping per week which could easily be a few nights of no sleep altogether.... and maybe 4 good days with less wake ups and more sleep..... and vice versa/more or less...... but i do notice i have developed out of it's own way a good sleeping habit....

my sleep is still far from what it should be but it has come a long way in a short period of time.... im hoping its not just one of my 'cycles' and comes back.... many symptoms cycle i have noticed, but still are unpredictable.....

sorry, im rambling..... hope this helped in some odd way....

best wishes for good sleep

tennille

all i have to say is there is a ton of amazing strong people on here! I am sooo stinkin happy and thankful that my husband found this sight for me!

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 never take for granted and will always be thankful for i love these women and men on here, and am now seeing younger ones pop up on here too

so very nice to meet you on here lilly

tennille