hilbiligrl

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, due to having anxiety/social anxiety/easliy overwhelmed since i was a child. Only one of those meds worked for a short period of time for my 'generalized anxiety/onset adult panic attacks'...... my panic never comes until after these either dys or mcad attacks happen (that's what i've kinda keyed mine down too), when all the sudden my breathing would go from difficult to severe hard time. Lexapro worked well for me with the general anxiety, overwhelming feelings, etc. But i was prescribed that about 6 years before i was diagnosed by a different doc. And it never really helped or hurt the breathing issues.......

for me..... and we are all different...... but for me, the ssri's, snri's and tri cyclics never worked.... they would make me worse.... severely worse on many levels.... i just can't handle them, my body and mind just can't handle them..... but once i was put on klonopin (the mega benzo... ) I did see some relief..... you can see my meds and dosage below in my signature.

At the same time I started Klonopin, i was also piecing together that i have mcad as well. So, while the Klonopin made a huge difference for handling this disease and helping with a few symptoms, it never made anything worse, ever. Lots of things calmed some, but it's not a cure all, as nothing is anyways for folks like us. I've been on the klonopin for almost a year now and since it has worked so well with anxiety and panic for me in dealing with this disease, we have found it an imperative part of my treatment. Xanax and ativan do not work well on me..... valium does, but klonopin for me was the best option.

Once I started on the MCAD regimen....... 2 things i have pieced together... 1. i no longer have the breathing issues (well, very rarely..... so i do have combivent just in case..... as all my pulmonary function tests were always perfectly fine) but, in addition to no longer having difficulty breathing everyday, but i noticed that my accute attacks of not being able to breathe and that comatose state thing, have almost stopped completely. and 2. my many years of urination of over 40 times a day came to a halt too (but i do have flare ups)......

so, I contribute (at this time with what knowledge i have) the breathing issues to the mcad. But i do think the benzo has helped too.

Im very scared to try ANYTHING, but at this point i am very open to trying ANYTHING....... in small doses at first of course.

Right now i have added ashgwandha to my regimen for 2 weeks now and have noticed it makes me calmer and i can handle stress even better, as it helps with adrenal fatigue..... but with everything can come side effects, and i have read up on a few with it.... so im still in experiment phase with it.

hope something in all this mess helps!!! it can be a long process in piecing things together and finding out what works for you..... not one of us will ever have the same med regimen, because we all are chemically different..... it's been a year and half since they found out what was wrong with me after almost 8-9 years of non treatment of anykind and no one getting to the bottom of things..... but in the last year and half on this board, i have pieced alot of into together in helping me find my regimen.... im sure it will always need changing and additions..... as im still hangin in ther around 5 bedridden days a week.....

good luck on your journey through all of this!!! you are not alone!!

tennille

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 in a very skeptical manner..... which had a serious negative impact on me......

My journey may have been long, but I was and have always been ever so grateful for finding my new doc a year ago in december. And boy was i so excited when he agreed to take me on, as he wasn't accepting patients any longer.......

glad you shared....... we are all very happy and excited for you!!!

good docs for us are rare gems!!

tennille

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 explained to her that yes, im very sick.... no, i am not going to die..... but i will most likely be sick for the rest of my life, but that I am strong enough to handle it and that I think God has great things in store for me with this disease..... i.e. I am wanting to ask my doc, who is a professor at our local medical school, if i can be a guest speaker about my diseases, etc....... I've let her know, i've got this and she needs to just be a kid, but that i do need their help.

It's working progress...... and I feel so much more relieved after reading all these posts, writing down each suggestion and really 'studying' them and applying them. Such great advice on both ends of the spectrum.

I cannot say thank you enough to each one of you

tennille

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?

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

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.....

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 over a 9 year period going back again and again to my doc (who i fired in the end) and going to the er repeatedly in a comatose state, and going to vanderbilt and many many tests over these 9 years...... well, everything was well documented...... cuz im a very persistant person. And each year I would do a fresh 'write up' of all of my symptoms and how they felt, which would be several pages long and i would submit it to my doc to put it on my record. But Honestly, my attorney handled it all from beginning to end, he only saw me 30 mins before the day of the hearing and he was like 'just be honest and explain what this has done to you'...... the judge asked me questions for about 15 mins and i was declared that there is no job whatsoever in today's society that i could ever hold down, especially with a 9 year record of all that's been going on and vanderbilt and my new rare case doc (who i've had for over a year now) have been able to piece it all together with diagnoses. So, all i done was answer questions and really explained how this all affected me, going from pharmacy school, straight As in college, and now to this in less than 3 years. I basically told him i was too smart for this and it was so very humiliating and embarrassing and explained alot of what goes on in a day.

That was it..... then i was approved. My attorney said i was his first case of this kind in over a 30 year span (he specializes in disability cases).... but he did pay me a compliment. He said it was my educational background and how i described it all and the 'speech' i gave that made them believe what i was saying was truth. I'm still kinda scratching my head. But thankful.

I am still scratching my head........ i mean, if it wasn't for this process of applying, i would have never found my integrative rare case doc..... cuz social security sent me to a reknown psychiatrist who after talking to me for a couple of hours and he said he had never talked to anyone past 30 mins in any case...... but he was curious as he had seen autonomic dysfunction but not around here..... so he knew what it was.... and was able to confirm that I wasn't crazy, that what i have is real and really messes up the body, which in return has effect on the mental state at times, in the severest flares and all/ or the constant state of illness. Alot of what he said about the diseases was right on, and he suggested i needed to fire my doc and submit my case to the doc i have now.... which was a blessing and a miracle, since he wasn't taking any more patients, but after reviewing my records and finding there was no substance abuse or chronic pain issues, he took me on and all.

the odd thing about all this.... i never saw an actual medical doctor. I was told that social security would make me see an actual doctor plus the psychiatrist. So, many things about my case, were just weird..... i only saw a psych, but it turns out his knowledge was vast and he knew what i was dealing with. So, they based their decision on my 9year medical records of all of this, current stuff from vanderbilt and my current doc and also findings from the psych doc too (of whom declared I had no mental issues other than anxiety disorder, which i've had since i was a child)......

so.... in all that.... i know its not much help, but maybe shows my process here in tn......

thanks everyone again!!!!

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

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!!

Nausea is my son's most debilitating symptom and is what has made him a homebound student for the most part of the last 3 years. January and February, historically, are his worst months. Also, no medications have helped him either and he has tried every over the counter med available.

Last year, doxepin at an extremely high dose gave him relief for 6 weeks and abruptly stopped.

Sorry can't be of mroe help.

Christy

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....

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..... most often i would go into a quick 'comatose' state..... in this state i could not walk, move, talk, communicate, breath, lift even a finger, nothing..... i am always mentally aware, but unable to speak or hardly keep eyes open. I just was like paralyzed, but in a very severe suffering state.... usually all i could do was have tears streaming down my face as i lay in this state in severe state of suffering...... everytime i went to the doc or to the er in this state: no one ever checked me for anaphactic shock, since i had no known allergies. However, if i had mcad the whole time, this could easily justify my 'attacks'..... especially now, since taking the mcad med regimen starting in feb of last year... i have noticed, my attacks are in a whoooooole lot more control now.

Ok..... now to get to my point. What my doc and I found was: in these attacks, If i took 'THC' when an attack started, or even if i was in a comatose state for days.... it would abruptly stop the attack dead in its tracks. So, we/I started to 'experiment' with every attack..... sure enough, as soon as it was 'intook' within less than 3 mins i was up walking talking and all fine and felt a million times better. Still works the same way till this day.

So, my doc and I have been pondering with each other all year..... how on earth is this affecting me to the point that it stops these attacks dead in it's tracks and exactly how it works in doing so. Then I found this article:

http://www.jimmunol....70/10/4953.full

There's alot i think i understand in this article and alot that i don't...... i would have to look up alot of terms to put alot of it together. BUT i want to point a few paragraphs out, so i will copy and paste them:

"The presence of CB2 (and CB1) in immune system cells strongly suggests that endocannabinoids are immunomodulators (7, 8, 24, 25). Indeed, cells of the immune system produce a range of endocannabinoids, but the role of these lipids in immunity is not clear. In the context of cannabinoid abuse, immune targets may contribute to associated pathology and increase the health care and societal costs of marijuana usage. In the context of marijuana-based therapeutics, immunomodulation may be a desired clinical effect or a potentially detrimental side effect. Exogenously applied cannabinoids have a generally immunosuppressive effect (7, 8, 24, 25, 26, 27, 28, 29). Documented in vivo effects include impaired responses to viral, bacterial, or protozoan challenge. If translatable to a physiological role for endocannabinoids, these studies suggest that cannabinoid lipids may down-regulate the intensity or duration of an ongoing immune response, or increase the threshold for initiation of immunoactivity.

Mast cells are strategically placed (30, 31, 32, 33) in tissues that interface with the external environment (e.g., airways, gastrointestinal tract). A variety of stimuli impact mast cells, including challenges to innate and acquired immunity, CNS-derived agents, and physical stressors. Mast cells release inflammatory mediators that act to increase local vascular permeability, perform limited killing function, and recruit other leukocytes to establish an effective inflammatory site. It is also becoming clear that, in the absence of explicit challenge, mast cells may contribute to the biology of their host tissue through the production of cytokines and growth factors (31, 32). In asthma and allergic disorders, the physiological role of mast cells is subverted and the cells react to innocuous stimuli with devastating results (30, 31, 32).

In the context of smoked marijuana, cannabinoids gain access to the systemic circulation within minutes of inhalation. However, airways and the gastrointestinal tract are immediate points of contact for both cannabinoids and tobacco constituents, and the resident mast cells in these areas will be impacted by marijuana smoke (34). Mast cells express CB2 cannabinoid receptors and a variety of responses to cannabinoid application have been described in these cells (35, 36, 37). In vitro, suppression of mast cell proinflammatory mediator release by both marijuana constituents and endocannabinoids has been described. The marijuana constituent tetrahydrocannabinol is highly suppressive in in vivo models of mast cell proinflammatory function. These models include passive cutaneous anaphylaxis and substance P- or carageenan-induced hyperalgesia and edema (24, 25, 38, 39, 40). In animals where ongoing airway hyperreactivity is being modeled, cannabinoid application has been shown to reduce airway epithelial pathology and decrease the leukocyte infiltrate (24, 25). The fact that mast cells themselves produce endocannabinoids, including anandamide, palmitoylethanolamide (PEA), and 2-arachidonylglycerol, is suggestive of a potential autocrine regulatory loop (37). "

and in their conclusion:

"Taken together, these data suggest that pre-exposure or concurrent exposure to marijuana-derived or endocannabinoids may profoundly alter mast cell-mediated tissue responses."

******Ok..... after reading all of that. Can this be proof that the cannibas suppresses what the mast cells are doing in an anaphylaxis episode/shock therefore stopping the attack?

Interesting stuff on how cannibas does really affect the mast cells.......

I do have some other points from other articles as far as cannibas can be both vasoconstricting and/or vasodiolating in the brain, i think, depending on the areas in the brain..... and a few other key points as well as to why it is working so well for me.

Ok, here is some other key things that sort of relate:

Cerebrovascular Effects:

Matthew & Wilson[xxxiv] found "In experienced marijuana smokers, marijuana smoking was accompanied by a significant bilateral increase in cerebral blood flow (CBF) especially in the frontal regions and cerebral blood velocity."

Bloom et al[xxxviii] found different areas of the brain to have different blood-flow responses to THC · "Changes in regional cerebral blood flow were observed in 16 of the 37 areas measured." Stein et al[xxxix] in the rat, an O"Leary et al[xl] in human recreational users, also found wide variations in cerebrovascular response in different brain regions.

However, it is clear that cannabinoids have a variety of cerebrovascular effects, increasing the blood supply to the brain[xlvi], and can protect against potentially fatal brain cell death following a stroke by reducing tumour necrosis factor, which causes self-destruction in exposed cells.

Cardiovascular effects:

Cannabis increases heart rate in na•ve users although tolerance develops to this effect.

Cannabinoids can also reduce blood pressure via arteriollar dilatation in a variety of tissues, although the effect on blood flow varies at a local level, with some organs or brain regions experiencing vasoconstriction, others vasodilation.

ok, so i put those last few things in there since they were referencing the brain and all and cardio aspects...... since dys and mcad are my two front runners of illness here..... i think if i do have pots, it only shows up in flares perhaps..... not so sure.....

Can anyone in here explain the cannibas and mast cell stuff in this article better than i can??? Or does everyone read it the way i read it?

Anyone who understands this better, please please post a response!!!!!! My main reason for posting this is: 1. is this telling me that cannibas/THS does suppress the mast cells thus result in abruptly stopping anaphylaxis shock?????

i also found an article where gluten can trigger mast cells i guess like an allergic reaction or if we have mcad it can trigger worse episodes, flares, general sick feeling every day........ i need to find that one and post it too..... hmmmmmm

thank u so much!!!

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, except for a few flares here and there. Also, im not sure if you have had any breathing issues.... i did for many years, until i started on the mcad meds......

Yes, my cns is way overstimulated...... i feel like i am forever stuck in the flight or fight mode and my integrative doc and i are working at balancing it out without conventional meds......

yes, i get these jolts inside my head that literally, feel like someone just hammered an icepick from the base of my skull threw to the top of my brain.... i have had these 'jolts' since a child and they hurt like nothing i could describe but only last a couple of mins..... i always thought that was normal but finding that it actually is not suppose to be normal. I have no idea what causes this, but seriously, that jolt of pain/electricity or whatever it is, like i said, feels like someone thrust an icepick up into my brain and it usually starts at the base of the back of my neck and shoots upward through my brain..... ugh.... would love to know what that is.

Also, i read an article where gluten can cause mast flares..... im going to share the article this week, cuz it also talks about how cannibas affects the mast cells.... interesting stuff...... so, you may be intolerant to gluten, especially at high intakes.... i know i am and have just recently made that connection, so my doc ordered me on a gluten free diet.

Im no expert by any means, but i've pieced together so much stuff on here over the past year and half and what my doc and I have found to work for me, i have found on here and taken to my doc and he is great about trying new stuff and has an open mind. We still struggle to get me functional again. I went about 8 years left untreated...... have only known about what i've got, just in the last year..... but i've made some progress here and there, but have also progressed a tad worse at the same time.... i know, contradicting... but these diseases are so very wild indeed.

good luck.... these folks on here are wonderful..... you can read my med regimen at the bottom..... if someone has same symptoms as me, i always check out their med regimen and what they have been diagnosed with..... those key things on here have made things easier for me to put things together and gave me ideas on how to treat me.......

best wishes!

tennille

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 nausea is one of the number one complaints of most everyone on here, or the majority. In the past year, my integrative doc and I have tried everything to no avail. I still take phenergan but I also take marinol (the marijuana pill)....... and it works pretty well on many symptoms thankfully, including the nausea. It's just so darn expensive and im fighting right now to get assistance for this 700 mth med.

Unfortunately, I've been with nausea, or it has been with me, for at least 5 good years now, maybe 6....... I never could figure out why I had it so severe..... everyone of my co-workers, friends were all like, 'what on earth is going on with her'...... and as i said before, i came here and found that most share this same symptom. It is among my worst symptoms and it is all day long, all night long kind of thing.

Hope you and your docs find a med that works. If none work, hoping your doc is open minded about trying other meds. If it wasn't for my integrative doc (he's also a rare case doc and a professor at our local medical school), if i hadn't found him when i did, i think i'd be totally insane by now. He is a real lifesaver, when all other methods arent working, we get in deep and start trying other methods, herbal, chinese, marinol..... you name it. I have an open mind and so does he when it comes to this disease.

Good luck and best wishes...... we feel your pain... and nausea too!!! It's never easy and never fun...... hope you find what works for you and soon!

tennille

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 counting the effects it has on the body..... it affects us in ways that people can't even begin to fathom, or even try to imagine.......

i hate to judge other people's issues and problems but i always come back to the thought that no one has been through stuff like this, unless they have this....... they will never truly understand how hard this is.....

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.

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, big time!!)

Im so sorry naomi...... have you tried for SSI instead of disability? tThe disability claim thing, i think i'll only get around 400-500 a month, by the time i applied, i had been struggling in and out of school and work and had not made much money the last few years before i applied 2 years ago.... 500 is not much, but i will be extremely grateful for it, as i can buy my supplements and meds that i have to pay cash for..... right now, i end up doing with out them sometimes 2 weeks and up to 3 months till im able to buy them.....so i know that will help and im so thankful for that. Plus it will honestly, help buy food.......

I know my dad applied waaaaaay too late for disability, but he applied for SSI and got it a few years back..... i think he only gets aorund 600 a mth....... but that's better than nothing...... they do get back pay for SSI if yu are found 'disabled'......

Ok gals..... i better jump off of here a bit, i've had 2 really bad sick days.... ugh.... this is no fun.

thank you both again for your replies

i wish you both the best!!! love yall

tennille

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 thankful for this..... but i also feel like a schmut, or a low life because where i was going to pharm school, 2 & 1/2 years later im on disability???? I'm so much smarter than this...... that's what i want to say to myself over and over.......

so, while it may be a good thing, i feel already the stereotyped negative social connotations about my own self being defined disabled.....

i dunno, maybe it will grow on me as i continue to be in a very debilitated state.... oh well.

nonetheless..... I am truly grateful, deeply, truly grateful. There's no doubting that.

with love

tennille

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 good days...... in the 'real workforce' there is no way possible i could hold a job down or school I've been sick for over 9 years, with each year progressing worse it seems.

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!!!

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 done with the anesthesia back then)

ok.... surgeries after illness started: 1. to get a tubal ligation..... but i had no idea what disease i had at any of these times. The effects of the anesthesia to the tubal: wen waking i could not breathe, but kept coming in and out of conciousness.... i was scared and kept asking 2 nurses beside me why i couldn't breath..... they said, 'i don't know, we've never heard that before' and then they kept on with their conversation. For about 2-3 hours i was left there alone, in and out of waking up, and trouble breathing..... i hated that and was angry with the nurses not doing anything about it. I was mildly symptomatic at the time. but that breathing issue had me scared bad. And oh, i noticed that after this surgery... i had constant back to back migraines with blinding auroras for a good few months.... i figured it was a mixture of the epidural, pain meds, anesthesia, the whole birthing process and all......

Surgery #2 during sickness: tonsils taken out..... under for 45 mins..... done absolutely fine coming out of anesthesia..... no probs whatsoever..... i was mildly to somewhat severe symptomatic during this time. (but i had told them about my breathing issues coming out of that anesthesia during that tubal ligation and they said they would make sure it didnt happen..... and it didn't) done great!

surgery #3 breast augmentation and abdominoplasty (breast implants, tummy tuck, all done at the same surgery in 2008). Under for almost 5 hours..... i was mildly symptomatic at this time and would have considered myself to have been in a small remission type period, with very mild symptoms going on..... i was also in college at the time and was working in a pharmacy too..... i was having health issues, but they were mild and would wax and wane..... but i was well enough to feel withhin myself that i wouldnt have any issues with this surgery. I done WELL...... all through surgery and afterwards.... had easy time waking up.... no problems whatsoever..... even in recovery the next 2 weeks.... all went well.

Now that i am very ill..... im not so sure how i would do under anesthesia..... so, i am eager to hear other responses as well..... as in the near future i may have a colonoscopy and a light from the other end as well......

hope that sheds some insight and possibilities

tennille

What explains the face thing though? I feel like it's strange that I had the driving epsiode the day after I didn't recognize myself or several other people. Let me clarify that too- it's not that I didn't know who they were that day (though I often don't know my husbands name in the middle of the night) , it was that their face looked weird to me, like something was wrong with it. I kept thinking, why do i look so strange to myself and what is different about my daughter and my husbands face? It was so weird and scary and only lasted for that day. The wierdest was looking in the mirror and not recognizing my face, very scary.

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 laydown and put a pillow over my face for a while and hope it 'goes away'........ i do know i have a tumor in my right eye, but it's not suppose to be causing any issues...... but i know that my eyes do very strange things..... with our without these episodes......

yes, i really do wish i knew what it was....... hmmmmm....... yep, i dont like the warped looking faces..... that really messes with me, especially when it's my child im looking at when it's happening..... oh my, i dont like that at all.

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

What was crazy was I was having those depersonalization spells WITHOUT any type of anxiety! I also get the confusion and I just call them brain fog... I will forget names, locations, what I am talking about mid sentence... ect. Some times its so bad I forget my own daughters name. Stupid POTS LOL

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????

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 have no idea where i am.... or who i am sometimes.... its like instant amnesia and i do freak out. yes, sometimes when i look at my kids it's like i've never seen them before in my life.... same thing with other familiar faces..... with this i get total confusion, panic, no clue where im at, what im doing, where im suppose to be...... I also have episodes that when im reading or typing.... all the sudden everything looks foreign to me. The words, letters, everything just looks like i have never saw it, don't understand it, can't read it and it just looks like a jumbled mess of a foreign language..... then sets in some massive confusion, even when looking at my hubbs and im like...... i've never seen him before but i know that i have and all...... and many times my speech is affected even more so and i stumble through words, sentences worse than usual.

Your 'episodes' sound so much like mine. Over the past year and a half it has increased in how many times the episodes like this hit and i actually have been discussing it with my doc and psychologist too these past 2 weeks. I - really - get - scared.... when this happens.... and i have no earthly clue what is triggering it or causing it. That confusion..... omg..... it is unreal, isn't it? And my short term memory is so shotty that it's pathetic..... but the thing is, i can't get use to this one symptom.... it always catches me by surprise, then im all confused massively, and nothing makes sense, i know nothing of anything.

Ugh.... im so sorry you do this too, but it is a bit comforting to me to know that i am not the only one who does this. And i can't get anyone to understand when this happens that im totally unfunctional....... and how scary it is for me.

Wishing you the best dear

tennille

mmmmm.....come to think of it I never have goosebumps either....even when I am so cold I am shivering.....but its more of an internal cold.....like I cant regulate my core temp

Bren

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