hilbiligrl

I have TONS of stomach issues, with the symptoms varying and changing in the way they feel, or severity. Sometimes it's indescribable but the way you describe yours is much like mine if not the same. Mine started a few years ago with just the nausea, but since has worsened with so many different symptoms going on in there..... and the diarrhea and pain down there.... and much more...... i've not seen any stomach doctor yet, as my integrative doc and I are going about different approaches. For my severe nausea and vomiting now, marinol is the only thing that helps.... it also seems to calm all the other stomach issues as well. We also found that for me a good quality probiotic daily and a gluten free diet has done wonders for me with my stomach...... that has been 2 months in the works and i can surely tell a huge difference in the stomach issues alone. As my symptoms have lessened in severity, and 'stomach attacks' (that's what i call mine) have lessened, and the diarrhea has lessened sooooo much. (oh and i also chew up DGL tablets, they are licorice tablets to help soothe the stomach lining and digestive lining track...... they help tremendously for my ulcer hope you feel better..... i sure know how it feels tennnille

i get the 'uncontrollable' goosebumps.... all over.... even my head/hair all the way down to my feet and it can last a long while... i hate it.... i haven't had any of those attacks in about a week though.... but im finding they are common with me..... i absolutely hate them because they come out of nowhere, no trigger, no reason..... ugh..... the weirdest feeling on earth!!! tennille

Ok... i took that test.... not too long of a test really. This is what it said : INFP : introverted 33% Intuitive: 88% Feeling 25% Perceiving 11 %. moderately expressed introvert very expressed intuitive personality moderately expressed feeling personality slightly expressed perceiving personality Before dysautonomia and as it was worsening..... i was go go go... multi tasker.... i could master anything extremely quickly. I had a huge fancy vocabulary (all that is gone now ) I could do many things at once or in a day and do them highly efficient/better than most, can't say so now. I could go days without sleep and go go go , do do do and do well.... those days are gone. I never was a socialite, never prob will be. I tend to stay home, always been that way. I was and still am very competitive. I learned easily.... still do, but i have challenges now. I still have the personality that i want to change the world or have a good hand in changing things that make a difference and in making a stand. I think over all i've lost the vibrant old me who culd do so much and loved staying busy and being darn good at anything i was put in front of...... i still have alot of me in me, but i can't use it due to all this illness. So, i'd say, i've lost some key parts of 'me' that i miss dearly...... yet, im evolving into something sort of different too...... but i sure wish i could be me before i got sick. I could almost be done with pharmacy school right now. Sigh...... tennille

WOW!!!! yall are great!!! im seriously writing down a checklist as we speak, cuz i seriously didn't know how to prepare for this!! Thank you! EACH of you!!! excellent ideas!!! YES!!! tennille

Ok... My family helps me with both my teenage children..... before i got bedridden sick, i was their homeroom mother from kindergarten through 5th grade, done their parties (they went to a private catholic school during grade school), and even was a lunch volunteer, went to all their school trips with them, etc. But i was sick on and off during those years, gradually got worse to where i am now these past 3 or so years. My mom told me and also my sister in law told me that my daughter, 13, is not dealing with me being sick well at all. They found a note in her back pocket she wrote to a friend (they were washing her jeans and found it....) but she wrote all about my illness, and that she worries about me all the time and that she would die for me and would do anything to make me better, etc and also how much she hates school now, and her teachers.... and she's not one to 'hate'.... she is one of those type personalities who likes to please everyone...... Also, her teacher told me basically the same thing about a month ago and that it is affecting her grades, in a bad way. Now, I don't get into any details with the kids about what i go through, or hardly anyone, cuz well i just don't think the 'outside' world to 'us' believes me half the time. But all my daughter knows is that i pass out some, vomit alot, diarrhea alot, headaches and im severely weak and sickly alot. She doesn't know about the unfathomable stuff and the unnerving stuff that comes along with this. And i don't talk about it around them.....heck, i have a hard time believing this stuff happens/is happening to me...... but I will have to have my mom/dad or my brother/his wife to come get them and/or take care of them on my worst days where I wouldn't dare let them see me go through what i go through. (they have their own bedrooms set up in my home, my parents, and my brother and his wife's home... so we strive to keep their lives organized and peaceful, happy and loving and supportive) So, im not sure what I've said, or done, or what she's heard me say to have made her so worried and freaked out. But it seems she's having these issues with my illness for quiet a while now..... I don't know what to say or do. Do any of you have advice or have been through the same thing either as a child or with your child? My psychologist, who is in the same office as my primary care integrative doc, who both specialize in chronic illness and rare cases....... she had mentioned that once she gets to know me and my disease (i started with her a month ago) that she thought the idea of bringing in a family member here and there would help (once she gets to know me of course... i've seen her 3 times now, hour appts each time... i see her tom again)..... but do you think it would be a good idea to see if my daughter would go to an appt with me with my psychologist (after i discuss it with her tom)? I wander if my psychologist could help relieve some of her worry???? Im so worried now and i have no idea at how to even approach this........ Or could it be more puberty and hormones too?? thanks everyone..... tennille

Ok guys and gals. After i got diagnosed by vandy back in sept of 2010, and learned of what i have and all. Over the past year, i have made me a 'life goals/wishlist/bucket list' of things i wanna make happen and have totally got to do in life. My number one on this list was to see my favorite band of all time, TOOL, in concert. I truly never thought it would really happen, but have always dreamed of the day. Now, i have never ever been to a concert, never been to a club, party, bar or even a girls night out dancin..... I have lived a sheltered life, yes. But, TOOL is coming to charlotte next month (which is about 3 hours from me) and this past saturday tickets went on sale and sold out within the first few mins. I have to share this with you cuz, with our disease(s), you guys know how MAJOR an event like this is and the chance that TOOL would tour again was pretty dismal and i had promised myself if they ever toured again, i would make it to a concert. So, i called the day before these tickets went on sale and the woman at ticket master said, listen, if you have had no experience with this, you need to be calling in 10 mins before they go on sale AND be online at the same time trying to buy them because she said they would sell out in the first few mins. So, i get up and im at the computer 30 mins beforehand...... 10 mins beforehand, im on the phone and set up online to try to buy 2 tickets...... time to buy and for the life of me i couldnt get any tickets online, sold that fast, but i was on the phone with them..... they said i could get 2 seats that are behind box seats and was like 'way awesome'..... but then omg..... my landline phone all the sudden got static in it, and hung up!!!!!! THAT'S NEVER HAPPENED!!!!!! EVER!!!! I used the land line just so something like that couldnt happen.... and it did???? and omg!!! i totally broke down sobbing so hard that hubbs here (he's 58 and im 34, we've been together for 11-12 years now)... anyways, he knows how deeply and how much this means to me and i was sooo sobbing, cuz i thought i totally lost those tickets due to the phone acting like it was possessed or something.... so im sobbing, about to pass out, sobbing and so hurt..... calling them back..... and totally got the hubbs crying too, cuz he hurt so bad that i was so tore up and totally sobbing, he just knew i was so hurt at not getting tickets...... .so i had to suck it up when i got ticketmaster back on the phone..... good news.... they locked in my order before the phone went bizerk!!!! So, i was told i had 2 good tickets behind the boxed seats area and at a darn good view! more than i could have dreamed or even expected or asked for!!! Ok... here's the kicker. Hours later in the day, after they sold out, i called ticketmaster back just to ask some questions cuz im new at this (i know, im a total dork..... 34 and never been to a concert???).... so i call back and as i get to talking to them, it comes out that my tickets where changed to balcony tickets.... which were way back further.... waaaaaayyyyy back further...... i was so upset..... not crying upset, but upset but still i was thankful i got them....... but i was so dissapointed cuz i had got my hopes up already with those good seats and had already booked a hotel that is like 1000 feet from the coliseum where the concert is. But they offered no reason why my tickets where changed, nor offered any better seats So.... here's the best kicker. I emailed ticketmaster not very long after that, cuz i was all disappointed and wanted to know how my seats got changed, and there was this option if i could request 'accessible' seats, due to handicap, etc. So, as i emailed them, i filled that form out. They responded that they were aware i was told the seats behind the box and then was changed out to the balcony and would send my accessible request in to the box office and see what they could do. So, i was like, ok, sure..... no prob..... i'll be happy no matter what. They write back an hour later and they OFFER ME 2 SEATS THAT ARE 4 ROWS FROM THE FRONT OF THE STAGE!!!!!!! Well, i didn't know what that meant..... had no idea if that meant i would be in a mosh pit or something and we ALL know on here that we can't do a mosh pit, right??? (im sure id be wheeled out on a stretcher if i got caught up in one of those!) so i had to ask folks who've been to their concerts before if they were good tickets.... and they were like good???? heck, you could prob see Maynard's sweat!!!! so im like OMG!!!!! finally after several hours of me deciding if this was a good option for me and this disease, and i even emailed ticketmaster back and said 'look, im naive to these things and all and i asked them if these were seats that would be in a moshpit, etc..." and they wrote back and said this venue and concert would have no mosh pit....so i took them!!!!.... all it costed was 6 more dollars and i was not asked to pay the original price due to the mess up and all. How on earth did i get that lucky??????? A TOTAL DREAM COME TRUE!!! Ok... so now..... im scared, intimidated and nervous. Hubbs is coming with me and 2 long time friends of ours who have been long time cops, are gonna meet up with us too and we all have booked at the same hotel. The cop friends know that im sick alot and sick bad....... so, i have 3 big dudes (im little) who are going and who can 'watch over me'....... but, im scared nonetheless.... what if the noise, lights, smoke, etc cause an episode (it's like a fainting/seizure like episode) or what if im sick, like bad sick that day? What can I do, or what would you guys advise for me for something like this??? I have been more bedridden lately than not, and well, i've just been sick and sick and sick and more sick..... doesn't seem to be letting up these past few months. I think my seats are were i can have easy access to the aisle to run to the bathroom should i start throwing up, or urinating a million times, or dirrehea..... so i think that is good..... but i really wanna enjoy this..... this right of passage that i have missed out on....... and i really wanna have a good feeling day..... and take all precautions so as to truly enjoy something that life has to offer. So.... ladies and gents..... i need advice!!!!! thanks so much...... i deeply wanted to share my excitement and awe at this lifetime opportunity for me with yall!!!! plus, i know you all would know what to advise for a concert with me in the shape im in...... love yall!!! tennille

Weakness has always been my number 1 symptom, my worse, the one that scares me the most. I have collapsed many times due to the severity of it. Cannot hold my head or arms up to drive, etc. I have to lay flat for many hours, or many days. I get so weak that i can't talk or even move a finger.... or it is excruciating exhaustion and the weak feeling gets more intense with any movement. Im weak 24/7 but it comes and goes in severity. It's utterly horrible. This is the one reason why i refuse to talk to friends on a phone. It is so exhausting and i have several friends that just don't 'get this' and they get so mad but i try to explain, but to no avail. Oh well, they aren't friends if they won't listen. My first attack of this disease 9 years ago in feb, first showed itself when i woke up severely ill and i stood up and was so weak i collapsed to the ground. I've had to be taken to the er many times in a comatose/paralyzed state of intense, severe weakness for days/weeks. Ugh. Never fun, is it? tennille

It's so good to hear from you Lovebug!!! The hubbs has made a wonderful recovery and started back to towing as soon as his heart doc said it was ok.... he works around the clock and has done so very well. He has tons to be thankful for.... seriously... .he is one lucky man to have recovered so well. It took a month to get his heart back into rhythm and since then he's really has no issues or probs and works all the time, he's doing so very well. After he got off many meds, he calmed down, thankfully and we are doing well Although he still throws a tantrum every now and again, but not like that one right after he got out of the hospital. I think it's his age and he just gets a big grumpy. I do notice he is tiring down very quickly....... I am still struggling with all the illness, but am thankful for the good days that i have. I still remain with about only 2 functional days a week, the other days are very difficult. But im making some progress with my doctor and all. A few weeks ago he wrote down that i have 'chronic autonomic dysfunction', 'mcad', 'chronic fatigue syndrome', gluten intolerance..... we also have talked about elhers danlos, and he believes i have that, but not confirmed. We are working together with a 'plan' and sometimes altering it here and there and i make small improvements along the way. They may be small, but they are improvements, and im very grateful for them. I'm changing over to a gluten free, sugar free lifestyle and going organic and fresh...... i mess up a little here and there.... but i notice more improvement. Hopefully very soon i'll be one it 100% and not messing up.... as it's so hard to get used to, and it's so hard to change the way you look at food and hard to change my food behavior..... but im trying very hard and im more than sure i can do it. I am also implementing yin yoga as well, and a few supplements, and also marinol, but i can't afford it, so i am applying for assistance, as it's the only med that will work for the constant nausea and vomiting and diarrhea that is so intense. But, i take it hour by hour and day by day.... good days, bad days, and very very bad days..... but i still have my humor, wit, sarcasm and laughter as much as i can. Oh and i also have a new therapist who is in my doctors office, who works with his chronically ill patients.... i really like her and im hoping she can teach me coping mechanisms when i have my meltdowns on the days that im severely sick, which are at least 3 times a week....... im thankful for that 'team' (my doc and his psychologist, all in his office, all in one place!!!) Thank you for asking about me and I hope that you are doing so well!!! Happy New Year to you my dear!!!! tennille

I was just wandering if anyone has been to a chiropractor who practices and is a 'maximized living' chiropractor. Or they are also called a 'corrective care' chiropractor. I was wandering if this type of chiropractor is beneficial to people like us??? thanks! tennille p.s. if you aren't sure, i can post a website that explains what is it all about.... but im not sure if i can post a website on here? it wouldn't be for advertisement, it's just one i've found and have been reading up on it..... not sure if i can afford this kind of stuff though, id say it's expensive

Thank you so much everyone! I agree with everyone, that it's the gluten free diet that is making the difference..... today i've bounced back to barely functional..... so i had a good 6 or 7 days there...... something to be thankful for I'm still working hard to eating right , etc..... looks like im adding some probiotics to my regimen too, as i do think they may be helping as well again, thank u everyone!! happy New year and wishing everyone a blessed new year on here! tennille

I was just reading the other day on a post regarding hormones, etc...... and i read something that issie had written about aspartame and how it works in the body/brain and then i was reading how it (phenylalanine) is a precursor for tyrosine, the monoamine signaling molecules dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). And also L-Phenylalanine is biologically converted into L-tyrosine, another one of the DNA-encoded amino acids. L-tyrosine in turn is converted into L-DOPA, which is further converted into dopamine, norepinephrine (noradrenaline), and epinephrine (adrenaline). The latter three are known as the catecholamines. (ok, i copied all that from wikipedia)...... cuz my poor give out brain can't make sense of what this does. What's going on is: for the past 4 nights i have eaten gluten free yogurt (1/2 of a small container a night before i go to bed) and it has aspartame in it. Each morning i have woke up to a functional morning...... and a fairly functional day. A seriously significant improvement that i haven't felt in about 2 years. Of course, im also implementing the gluten free diet as best as i can..... and i noticed that 3 of those nights, that i slept hard, without waking up, a full night's sleep and well and actually woke up feeling like i had rested and i haven't felt that in probably 9 years, ever. Keep in mind, I started on my period yesterday, so the 2 days before that and up until now would have been my most severe days of the month, as most of us are most severe the days before and during our periods. So, even with going into my monthly cycle and during it, all the sudden it's a very, very noticable change...... not a cure all, but it's just so obvious something is different. I have thought this over and over the past few days since i read that post first about the aspartame, and then i was eating that yogurt and just happened to notice the next mornings were different, far different than id felt in a long time..... then i put 2 and 2 together and wandering if the aspartame could be contributing to this. But i can't seem to eat a whole container, if i eat the whole container, i feel some of the negative side effects, but a half one i seem to tolerate for the time being...... BUT is it this? that is making the difference??? I haven't changed any meds, other than going from generic zantac to the brand for a week, for my mcad. I may be jumping to conclusions..... or it could be the brand named zantac? Or it could be a few days of remission..... But this is such an evident difference that i have never felt in a good 2-3 years, possibly more. I've walked around for days (get that??? i've walked more than i have in forever! but tire very very quickly still).... but have walked around wandering what it is that could be making this much of a difference and i cant figure it out. I have had 4 mornings that i could get out of bed and go. Of course, i run down fast and all, but i can tell something is different..... even the digestive issues have lightened up considerably... (could be due to the probiotics that is in the yogurt as well). Is anyone's brain working today, cuz i still can't seem to make sense of it, or even if this is possible? Any thoughts, suggestions, ideas on the aspartame and how it affects the brain, in lamens terms? thanks!! tennille

I also seem to be stuck in the 'fight or flight mode'.... for about 9 years now, but in the past 2 years, it has been super intense and neverending. I had 2 very poorly tilt table tests done, one from our reknown heart center in my hometown and one from vanderbilts autonomic unit. One was inconclusive and the other, was a poor man's tilt test.... and i wasn't having my multitude of symptoms that day, only maybe 3/4s of them. And why i say multitude, is because i can have over 50 different symptoms in one day, everyday. My integrative doc and I have talked for a year now about my case. We talk alot about my forever being stuck in the flight or fight mode. I think the meds that i take should be in my 'signature' at the bottom of this post, if you would like to compare to yourself and others. I think our first initial attempt to get things more 'in control' was to be put on klonopin...... although it helps alot, i still get the same feeling you describe. And it's a feeling of like you really want to crawl out of your skin but you just can't and it, to me, can lead me to desperate measures that i will not mention here. Also, one key factor was figuring out that i do have mast cell activation disorder, thanks to several amazing women on this forum. That, has been one key factor in me regaining some part of 'me' and lessening some of my other major symptoms, such as the breathing issues and the constant urination of up to 40 some times a day (no kidding.... seriously)........ My integrative doctor, as of a few weeks ago, put on my charts as having 'chronic autonomic dysfunction' 'mast cell activation disorder' 'chronic fatigue syndrome' 'gluten intolerance' and chronic headache..... (as in, it never goes away.... ever..... in like many years..... never have i spent a day without one). He also suspects me to have 'elhers danlos' and possible mitocondrial disease........ We are currently working with yin yoga......im trying to learn to meditate......a diet free of gluten and sugar (or as free as i can possibly get it) and my current concoction of meds and supplements.... (and im currently working on assistance with marinol), which we both have found very beneficial for me since i vomit and have dirrrhea every day of my life for hours at a time. The elimination of gluten has 'calmed' things down a bit and has made a definite difference, not a cure all, but well worth living a 'clean diet' lifestyle, which i still struggle greatly with.... but with that diet, my meds and marinol, the fight or flight, seems to lessen considerably. Unfortunately, i cannot afford 700 a month for the marinol, so i am having to due without and still in a very sick state. My last appt last week, he also is adding ashwagandha to my regimen...... for my poor response to even the tiniest of 'stressors'....... this is suppose to help adrenal fatigue, as well as sleep, as i have had insomnia since i was a child. oh and one thing i found out for me..... i cannot take ssri, or snris or tri cyclics..... and i cannot take benadryl, atarax..... the phsyc drugs make me a million times worse and can quickly and easily send me into a psychotic state, which are scarier than i don't know what.... only one worked for me for 1 year, which was lexapro, but after about 9 mths and 35 lbs of weight gain later, it stopped working...... the benadryl, etc..... if i take that, im climbing out of my skin and climbing the walls... i literally want to peal my skin off due to the feeling of a blue million nerve endings all firing uncontrollably (that's the feeling i get) almost like someone is slowly electricuting me..... had to go to the er over a few of those that i tried...... never want to feel that feeling again..... but, due to the 'stuck in the fight or flight mode'..... i get that same feeling and it is utterly horrendous. I feel like im being physically tortured everyday.... which does horrible things on the mentality. Oh, and i fired my old therapist/phsyc doc of 3 years...... as every experience with them was negative...... and they could not teach me coping mechanisms in dealing with my intense spikes and intense illness times, which are many, which are often.... and my own coping mechanisms where no longer working. My integrative doctor, who is also a professor at our medical school here, has in his office, a psychologist who deals only with the chronically ill, of whom are my doctors patients, all of whom are chronically ill with rare cases (my doc is a rare case doc)..... so i started up with her a couple of weeks ago. I knew i had to have some type of therapy. As going from a straight A student in college and entering pharmacy school and now being bedridden about 60-90% of the time...... well, it is quiet humiliating and all this sickness is really getting to me after so many years and i cannot apply myself to anything, and that is a hard concept for me to accept, among many others. I've been researching for 9 years about what's going on with me. This site, being a key factor in any progress i have made......Hoping with a few things set in place and with the help of marinol, if i get it, and with the yin yoga, clean diet, my current meds and ashwagandha and im sure more suppliments and medication changes in the future.... hoping to gain some life back this year. Not sure..... but i do have a darn good integrative doc who listens, cares, and BELIEVES ME. He and I discuss many options and he, if i can back up what i suggest with good research, he will allow me to try meds/alternate methods that I mention, with the agreement that i try meds, alternate methods that he suggests too. I feel like he is in this with me for the long haul and that, is what keeps me going. A caring integrative doctor, who does believe and does want to help in every way. But.... i sure would love the fight or flight mode to just get back to normal for once... and forever..... but oh well..... still working on it. much luck..... peace be with you and many blessings for answers that you need. tennille

This has been one of my most horrible and worse symptoms...... and i never could get any doc to understand this. So, i counted how many times i urinated a day..... up to 40 or more times, EASY! Sometimes i would just sit and cry and cry on the the toilet due to being so exhausted already, plus having to go to the toilet so many times..... and i barely drink fluids...... i just never have been a thirsty kinda gal. I always, always urinated more than i drank. One of my doctors accused me of lying about this. Every er i went into, treated me the same way..... This went on for years but since I started a H1 and H2 combo med in the morn for MCAD.... i noticed that this one symptom and my breathing symptoms subsided greatly. I still have my 'attacks' of it, but no where near what it used to be. So, im contributing the med combo for MCAD to be what has helped greatly with the frequent urination. I'm sure i would have tested positive for DI...... but since the med combo seems to be working, im off to other things to try for all the other bad stuff going on. just a thought tennille

Hey you guys and gals: i have a disability hearing this friday for disability or ssi. Do you guys have any advice or suggestions?? thanks so much tennille

hello all: just wanted to update that at my last doctor visit, my doc had a chronic fatigue specialist with him to talk to me and all. So, here's what is being said about my 'case'. Doc says he put down that i have 'chronic autonomic dysfunction' (not sure if that is a true medical term for the DYS, but well, it really describes me..... chronic.... lol). Also, added to that: Chronic Fatigue Syndrome. I figured i had it anyways for many years, but i hate that phrase to it's core because it is so misjudged and misunderstood as to the true severity of it. Also, i was ordered on a 100% gluten free diet. And, I have implemented yin yoga since i have no strength to stand, etc. The gluten free diet, oddly, has made a difference. I honestly, just didn't believe that gluten could be doing so much damage, but im amazed at the difference. It's not a cure, but I can tell it has made a real difference. In still in a 50-70% bedridden range.... and still having only a couple of real good days a week. But I admit, it is very hard to stay on track and i mess up a tad here and there..... but it is working progress. Im also being prescribed dronabinol, but working on getting it covered, as it is like over 500 a month. We are hoping this will help with my relentless nausea, vomiting, diarrhea and the extreme 'sick' feeling that i suffer through every second... (lots of suffering and agony going on that is so very undescribeable). Anyways, just thought id post an update on my diagnoses and see what you guys thought. Many blessings everyone tennille

IM SORRY, I KEPT CALLING YOU RICK AND I MEANT RICH....... SO SORRY...... IT'S BEEN DIFFICULT..... PLEASE OVERLOOK MY MISHAPS

I read this a week or so ago and had to tune in to macks mom and to rich. For 9 years ive had the terrible breathing probs as described by rick. No one could ever find out what caused it. Many, many tests. Many trips to the er. Much fear. Im not feeling well these days, so i'll be quick. Last jan, i read from macks mom about the mcad, and i kept reading about it, and more and more, i knew inside i had it. So, i done what macks mom suggested, taking an h1 and h2 med combo, early in the morning for me. I was so bad off that i had to start on doxepin, which is one, if not the, strongest h1/h2 meds out there. However, i cannot tolerate any type of meds along those lines (trycylclics, ssris, snris, etc) .... as they really make me sick physically and mentally. But, i was able to tolerate the doxepin for 5 weeks and it seemed that it helped so much and at least gave me the edge i needed, and then resumed back to the zantac and zyrtec that macks mom suggested. It did not hit me till now, till this post (even though ive searched for an answer on here and even posted with no real reply, about the breathing issue, as it was number 2 on my symptom list...... it could easily have been number 1, right along side my severe 24/7 exhaustion. Any ways..... it just hit me..... that since i've been taking the h1 and h2 combo early am, that i put it together that i have no had the breathing probs for the first time in almost 9 years!!!!!! So, my breathing has so very very much improved since i started taking the h1 and h2..... and I DID NOT 'GET IT' TILL NOW!!!!! (i was actually thinking the other week, 'ya know, i dont have that breathing prob anymore and havent had it in many many months now'.... and then i read this and thought...... 'omg! the breathing prob subsided once i was on the h1 & h2 med combo for a few weeks)..... wow..... you guys have no idea how excited i got to figure that one out!!!! Thank you Rich and macks mom for posting this, as it has helped me put a few things together. I have also noticed, since taking the h1 and h2 combo, that i no longer urinate up to 40 times a day. I have small bouts of it, but before it was all day everday for 9 years. I'm not sure if the mcad meds have helped this for me..... but it coincides with when the breathing probs subsided. Thank you all for this post.... im so glad rich that you posted it the way you did to get responses.... as i never could get response or find a post about the major breathing issues. And thank you macks mom for posting to this as well cuz you just put two and two together for me and i am so thrilled to understand what was causing my breathing issues. Mack's mom, do you know if the mcad would have caused the constant urination? thanks so much again for this post..... i direly needed it..... and wow, how good it feels to piece things together..... god bless tennille

Hello Potsgirl93 and welcome. I noticed no one had responded, so let me pitch in. I haven't been diagnosed with POTS, (my TTT were inconclusive and done poorly and vanderbilt did not perform but like 2 tests on me and one of them was the TTT) but I have been diagnosed with general Dysautonomia...... but i have all the symptoms of POTS. One thing that you and I can be sure of, is that you will prob see new symptoms as you go along with this disease.... new and very weird ones, with variations of intensity, how it 'feels', etc..... so it is important that you remember that, and when a new symptom shows itself, try to remain calm and keep yourself talked down. This is one thing i have learned and learned well..... even after 9 years of this, still new symptoms show up all the time, or a perhaps "same symptom" yet the symptom feels different sometimes (hard to explain, but i think alot on here would know exactly what i mean by that I use to freak out with new symptoms, and i mean freak out as i have very bad anxiety and panic....... but after coming here, i learned that we all have different symptoms, alot the same too; but i learned here from many, many others that new and weird symptoms/feelings/pains, etc, are normal. So, when a new one starts, I do whatever I can to keep calm and talk myself down. I do have weird sensations in the same area that you describe, i seem to get it more in the right breast/chest though and for me, this one is a new one theses past 9 mths..... as it comes and goes. If it persists, gets worse or you just can't stand it anymore and feel your doc needs to check this out for you, then, of course, go for it. In the meantime, i know it's aggravating and unsettling...... as you learn to deal with new symptoms, it became vital for me to go to a happy place in my head, listen to upbeat music with the earphones, watch comedies, etc to get your mind off things..... all while talking yourself down and talking & teaching yourself to be calm and ok. Im still working on this particular coping mechanism (the talking myself down)..... i've been working on it for many months now as it has worked for many years with my vision loss with silent migraines and it noticed as I became better at it, my vision loss time would decrease more and more...... but i think i basically had to really, really force myself to change my panic thoughts when the vision loss occurs, cuz that one thing flips me out everytime and i've had that since 7th grade (im 34 now). Im hoping some others can tune in here and post some thoughts, ideas, etc ....... i do have 'uncommon' symptoms that most others don't have as well, and i think we all do, so, in that, i find more comfort. But, if you ever get a gut instinct that something needs to be addressed, then by all means, go to the doc....... otherwise, you aren't the only one with that weird pain, numbness sensation in the chest/breast area..... as it happens to be one of the most nerve wrecking symptoms i have..... grrrr Also, symptoms will get worse (for most all of uss on here) like around the week right before your period and during to a few days after..... i guess it's like a peak time for symptoms just to go nuts...... knowing that, has helped me create a calandar of knowing when my worst days are most likely...... sorry i've rambled so much...... hope this helps in some small way tennille

I also have the right eye thing..... i do however, have a tumor in my right eye, that is suppose to be noncancerous and not growing as they keep an eye (lol.... pun) on it every 6 mths..... regardless, my right eye ball and socket feel weird, unusual, somewhat pain & discomfort.... and it seems to remain bloodshot all the time, even if i put eye drops in it...... if i were to close my eyes and concentrate on both of my eyes, i can clearly feel the left eye 'feels normal and better' than the right one.... have no idea why though. tennille

I seem to cycle as well... with severity, and certain multitudes of daily symptoms...... but not the same cycle as you...... I also have short and long term remissions and relapses....... my doctors first thought MG, then MS.... but after retesting these for an 8 year span, they came up negative everytime..... so last year my twin sister took me to vanderbilt to get a diagnosis, as no one in our area could figure out what was wrong. General dysautonomia. My doc never heard of it and refused to consult with vandy.... so i fired her and found a rare case doc in my area who was willing to take me on and consult with vandy and who had never heard of DYS either, but really wanted to know as much as he could find out. so, yes, i have noticed over the past 9 years, and especially since I have progressed worse these past 2-3 years..... that there are cycles.... and remissions and relapses....... amazing how it took me till this past 2 years to realize that connection...... you are definitely not alone hugs tennille

I honestly am at a loss for words, as i get just as bad, but it seems my body and the meds for me are different than what works for you.... and im still learning. I have never admitted this before on here, but here goes: 3 years ago when this illness brought me down and down bad. My mom and dad, my twin sister, my brother and his wife (they all live within one street of each other... cool huh?). Anyways, they had always helped me with the kids (as their real father skipped out on us when they were 3 and 5 and never seen since, kids are now 14 and 12). Anyways, my family has been tremendous in helping me with the kids. Since I have progressed even more sick over the past few years, we have had to have some heart to heart talks...... and as a family, we decided that not only do my children have their own rooms here, but they have their own bedrooms at my moms and my brother and his wife's (who wanted to have many children, but where only able to have one..... so they really love to help with my kids from their heart). So, in my long periods of sickness, they stay most of their time with mom/dad or my bro & his wife..... but we make it organized, structured, loving, and then some for them, so as not to weird them out. But they understand the severity of how I have become. I can no longer take them places, games, etc...... even being able to get up at the early hour and get them to school on time is a notta, as within mins of waking up, im vomiting and diarrhea quiet intensely for hours........ I do what I can when I am able and no one puts me down because I am sick...... ok, sometimes they do...... but as a mother, i do feel extremely humiliated and embarassed and i carry a tremendous amount of guilt. So, leize has some great advice.......... When I am at my worst, which what seems to be where you are now..... has anyone tried cannibas or the marinol pill? My doc and I are working with marinol and it has really made a huge difference..... a huge difference...... if i could only afford it, as insurance won't cover it. I guess, in other words, when i get this bad...... i turn to my last and only option that helps me through it, which is the marinol. I actually can't take atarax or benadryl....... even though i take meds for mcad..... my body reacts to atarax and bendadryl as if someone has electrified me with the most intense fight & flight mode i've ever had..... i've even had to be admitted to the er from the reaction I get from these 2 meds...... so im lost there, as those seem to work for you....... on the ativan? do you think it would be better to try a more potent benzo during these times? if not for permanant, id try valium, but as i said in another post, klonopin works excellent for me.... .and even seems to supress my constant living in the fight & flight mode..... ok..... i know that wasn't much help, but i noticed no one had responded yet, and i know how direly we need someone when we are spiking in our symptoms and illness...... let's hope you can find something that works for you to help you get on a better track thoughts and prayers your way...... as you sound like you are having it so rough....... as well as I am right now, as the monthly period is in one week and i go down hard the week before.... hence why i got very sick, passed out yest and was so very sick all night and today...... ugh.... best wishes and lots of luv tennille

Hey guys: I've had experience with xanax (alprazolam), ativan (lorazepam), valium (diazepam) and klonopin (clonazepam) Also, i was studying pharmacy, and worked in one for 4 years too. In my personal experience, i have listed these in order of the least impact/effectiveness for me to the best effectiveness for me (as listed above in my first sentence) Leize is correct.... docs go freaking crazy if you ask for one of these meds, as they are benzos and can be addictive. Xanax didn't do it for me... made me dizzy and didn't even seem to touch my anxiety, phobias, panic. Ativan for me, was like taking water... i literally could take 10 and get nothing. Valium and Klonopin worked best for me as anxiety, panic, etc are waaaaaay out of hand for me since I was very little. If you need something short term and can handle a valium or half of one (for the dentist procedure), valium is what I would choose. As valium was always quick to calm me, but if i took a whole 10mg, id be a tad sleepy, but not bad. So, i personally would take a 10 mg tab 30 mins prior to a dentist appt and then i would be fine. However, since feb this year, I've been back on Klonopin twice daily, as it is the mega of the benzos. One of them is like comparing a few valiums to it (id have to look it up to correctly compare it). It works a little slower, so, for short term dentist visit, it prob wouldn't be the best..... but it stays in the body much much longer than the others, as it has a long half life, therefore delivering the med all day long.... so to speak. It has been a life saver for me. Each of our bodies work differently, some of us don't tolerate the klonopin like i do, but instead stick with xanax, or valium or ativan. If you are looking for something just for the dentist appts, my suggestion would be to see if your doc or dentist would prescribe 1-3 valiums, for procedures, start with half of one and see how it makes you feel and maybe take the other half with you to the dentist appt, and take it if you feel you needed the other half. If you are looking for something long term, then a honest heart to heart talk with your doc is needed (hoping he/she has an open mind and isn't a turd about things.... lol) as, depending on how long term you need it, then a more potent benzo like valium or klonopin, might be ideal. Keep in mind, klonopin is very hard to wean off of, if one decided they needed to. I, personally, am ok with having to take it forever, as i do not have addictive type tendencies and can skip a few doses, in order to not develop a tolerance, so that I am not increased in dosage. Smarter doctors, will wean klonopin users off with valium and taper down, which makes the weaning off a safer and more controlled process. Im rambling on now...... hope this gives you some insight??? In all honesty.... i would describe my anxiety, phobias and panic as in an 'intense 24/7' catagory since childhood (i used to chew my fingers till they bleed due to worry/anxiety/panic, and more...) ...... and due to that intensity all day and all night long for all my life, valium and klonopin have worked the best for me. Valium for dentist procedures or short term..... but klonopin i found was exactly what i needed as a part of my daily meds..... as it has tremendously calmed down my fears, irrational worrying, anxiety, panic and phobias. I do still have panic modes and some anxiety, but no where near as much as before.... and since feb..... i feel as if i can breath again, in a literal sense and in a 'mental/psychological" sense. I am by far not perfect, but have made improvement in that one area, which had made dealing with this disease so much better. much luck to you!!!! tennille

lieze~ great post..... as i was thinking around the same lines..... i know, that my life has severe stressors, daily, weekly.... and im not dealing with them at all even on a decent standpoint. I have been overly, overly nervous my ENTIRE life..... small things, throw me for loops..... however, to contradict what i just said, i've always been a pillar of strength in an odd sort of way...... but my strength has wore down considerably over the years. interesting about the stress induced anaphalaxis...... i wander if it can happen if it was a stressor from days before an attack happens, or if its triggered by tiny amounts of stress...... glad you mentioned that, as i will read into it. you are so correct... the mind and body connection is powerful..... and i cant ever seem to ever remember a day in my entire life of me ever being relaxed..... ever.... .and im being completely honest. the low dose of klonopin i have been taking has made a difference in one area, (anxiety and worry).... but doesnt seem to affect the 'panic' in me..... i overly panic many times a day..... ugh, im so lost in all of this, which i guess many of us are.... lieze~ how are you doing? thanks for your reply tennille

I need to reply to a post, but wanted to post this one really quick. I have been getting much worse again and it's totally freaking me out. I've found a few articles about balancing the para and the sympa pathways with holistic methods (im guessing its like tested with chakra methods (and others that are nonconventional) then treated with tincture type holistic meds)...... one tincture would balance/correct the para and a different one would do the same for sympa.... but what if both are malfunctioned and the whole autonomic system is truly malfunctioned? Does this mean, this type of approach would not even work? Has anyone went this route or tried it? My prob is, is this dysautonomia a complete malfunction that will not respond to this type of method treatment? My reasoning with that question is that, it seems BOTH my para and sypa are both severely out of whack. It's not just one. All the things im reading is as if it treats one pathway or the other but i can't find where this method treats and balances them both back to where they are suppose to be...... so now I am confused. Any input anyone? Is this an area of treatment that does not apply to 'us'? Now im confused.... if my autonomic system is malfunctioned..... that's totally different than out of balance...... am i right here? I hope someone can enlighten me in this area..... please???? thanks so much tennille

wow you guys.... i totally had no idea i had some more feedback.... but ive had some very very bedridden, can't even move an inch without feeling like i was taking my last breath... ugh..... i have lots to say and a report on my psych doc who i ONLY get my sleep meds from..... however, im a bit rough and im gonna have to get my mind together to write out an appropriate response to each of you..... so, to be continued hopefully i can reply back by the end of the day.... lol, maybe.... tennille and thanks again everyone!!!