hilbiligrl

Hope for all ~

i usually will drink gatorade, water; every now and then mt. dew and tea, but no where near enough that it should start decaying this rapidly this badly. I was asking hubby the other day if there was such a thing that would strengthened my teeth, I never though of that mouthwash at all.... indeed it is something i need to invest in. And my dentist, i will definitely be asking about this come wednesday. I have always tended to have worse teeth compared to others, as far as cavities, etc.... but wow, just year ago it was a clean bill and now this. And im a little ocd about my teeth, so i brush and floss alot and am always aware of any cavities..... About 3 months ago there was just one tooth broke off, and now all the sudden im finding 4 other holes in different teeth. And i take plenty of vitamins.

Angelika ~

I haven't had any steroids, actually, i can't recal that I ever have. Although, i was going through some intense stressful time for a whole year that put me into a bedridden state for over a year... i wonder if all that stress can cause this?

thanks!

hilbiligrl

Hey everybody,

I want to reply to some other posts, but as my brain comes in and out of working like it should, i wanted to ask this right quick. Do any of you have issues with cavaties and tooth decay more so than would should be? I use rembrandt, always have; i take excellent care of my teeth, floss like i should, etc. I go to the dentist yearly for checkups and in the last several years it's been one cavity after another and now i have 5 different holes in my teeth that progressed rather rapidly. I just don't know if others have this problem. I don't eat tons of sweets, at least not enough to cause all this.

I go to the dentist wed to get them filled. I will be asking for the numbing med without whatever it is that races the heart. Then right after the dentist, i go for my first heart specialist appt..... that might be a good thing if getting my teeth filled may cause my heart to race and then going straight to the heart doc immediately after.

much thanks

hilbiligrl

Hello Nela ~

I have never had hives, but that doesn't mean it isn't dysautonomia related. I did want to mention that have highs and lows out of nowhere, nothing is every constant... and well, that's about the only 'constant' thing about this disease in me. I had to comment on the urination: I have had this problem for YEARS. Uh-mah-gosh is it horrible! It comes in spells but seems to be one of my more frequent symptoms, as it seems to be present about 80-90% of the time for no apparent trigger that i can find. And, i can only manage about 1 or 2 glasses of fluid a day. I am never thirsty and my stomach turns at the thought of drinking anything. So, I will drink very little and urinate a huge amount, more than what i take in. Today, I got up at 8:30 am... and it is 5:35 pm right now eastern standard time and i have marked on my calandar for today every time I have urinated. So far it's been 24 times. 80% of the time, it's quiet a bit.... very little is it a small amount. If I up the intake of fluids, it's even worse.

This is one of my worst symptoms and some days im soooo tired from this and so nerve wracked by it that i just sit and cry. I have told this to docs for years, yet they just say 'that's odd'. I am not on meds for this yet, but i cant wait to try them.

I hate that you have to go through these things, because it is easily torturous, but know that you aren't alone.

God bless....

hilbiligrl

friedbrain ~

What happens with your 'seizure' activity? And, was the docs able to quickly pick up on that your episodes have seizure activity? And, how were they able to identify that there is seizure activity going on? Im curious, as ive had extreme episodes for years and somehow i keep thinking that some seizure type activity may be going on.... i haven't heard anyone on this board yet mention they actually had seizure activity, although i have read it in some doctor reports on the net when referring to autonomic dysfunction..... so your post has caught my curiosity.

thanks for any info

hilbiligrl

radio ~

It is called mast cell activation disorder. I had never heard of it until i saw many posts on here about. I had been on here searching and reading and learning for a few months before i could post and i kept seeing this mcad popping up again and again. I finally started reading up on it. I didn't think i showed the 'correct' symptoms of it at first, but when i started reading different posts on here about how they feel and certain things that they talk about, it just 'sounded' like me echoing some of the same phrases others used to describe their symptoms. I think i had read 'macksmom' posts about taking the zyrtec and zantac (generic of course for me). And i thought since its an over the counter meds, i might as well try it and see if i can notice a difference. And the truth is, i think i actually can... at least i hope.

Google it, and search for it on here, then cross reference with searches like i did 'mast cell activation disorder in pots' or 'autonomic dysfunction'. I would explain it, but my brain is 'showing its tail' today and not cooperating with forming sentences too well.

I do think i have some other issues as well..... so, i am starting to jot down everything to take to the docs appt with me over the next few weeks. (if i can get my brain to work to compile all my info and stuff together... lol)

I think i learned more from this forum about the 'hands on' part of having it rather than what is book taught in the medical field. I have discovered there are a few other diseases they mention on the forum that i show tell tale signs of, and if it werent for this forum and being able to start putting the pieces of my puzzle together, I would never known this stuff existed. After learning about the cells in the body, mitochondria and atp stuff in college... i had always told the docs it was if my cells in my body were doing weird things or that perhaps my ATP energy pathways in the cells are malfunctioning or something. So, what i felt, ended up kinda making sense in the end.

i hope that helps..... (and i hope that made some sense....

hilbiligrl

radio ~

sorry, one more thought. I suspect that i have mcad and upon researching it and jotting down suggestions from previous posts from this board, i starting experimenting with the zyrtec and zantac in the morning. It seemed to work for a while... about 4 weeks.... then i stopped and progressed into a severe state for about 4-6 weeks and decided id try it again 5 days ago. It seems to really help many of my symptoms, not all, but quiet a few and for 4 days ive not been so severe at all. It is seeming to minimize my over-firing of the sympathetic system as well. Things are much more bearable these past few days. I still don't know certainly for sure if these 2 meds in the am are what is causing me to feel a bit better and im hoping its not a mini cycle of the exchange of symptoms every few days.... so i guess i will keep at it for a while and see.

just a thought

hilbiligrl

firewatcher ~

thanks for the info! I was a little worried about any testing that might require some hair shaving and my hair is thick and to my waist and a very huge part of who i am (i know, sounds silly, but it is This actually sounds pretty neat and something i will inquire about as i start my journey with testing, etc here next week and next month. I have basically had GAD all my life, but never really diagnosed with it cuz i refused meds most my life. Can this test show what is happening in the brain activity during severe episodes i wonder? I'd like to physically see what the brain activity is when im having a severe episode, as my severe ones are almost like a long term seizure with full body paralysis (and many other symptoms to boot).

hilbiligrl

radio~

one more thing.... antidepressants, especially ssris = dangerous side effects. Was admitted to hospital twice over side effects of ssris, as well as possible serotonin syndrome. I will never ever ever allow any doc to talk me into trying another ssri. I've tried them all (in order to not take a benzo or anything addictive)... but every one = some scary stuff going on. Even my fam doc i fired recently freaked out when i went to the er with some freak side effects several times. She finally got the hint that my system as a whole couldn't handle the addition of such chemicals.

hilbiligrl

radio ~

I too have had years, upon years of insomnia. I could go 5 days easy with no sleep and as I am getting older, it is getting horrid. I have tried every sleep med out there, but to no avail. I have never tried unisom though. When i try benadryl or vistaril... omg, my sympathetic firing goes off the chart and the feeling is utter torture. I want to literally peel out of my own skin if that were possible. I respond best to benzodiazapines. Since i have a pharmacy background in school and work, i know all too well how addictive it is and it is for that reason i stopped taking it over a year and half ago. (and, at that time, i didn't realize how well this med worked for me... i had only taken it for about 9 mths). I use to be dead set on not taking any meds for any reasons... i had an abnormal fear of them and i still do. BUT... i have suffered in pure agony for so long that I know once they put me on klonopin again, that i probably will be on it forever... and im perfectly ok with that, as seeing what an incurable chronic illness can do to my physical, mental, pyschological, emotional, and spiritual well being. I had always tried to explain to the docs that it was as if my gaba receptors where firing uncontrollably to the point my head would explode if it were any more intense and chaotic.

So, upon that said.... i decided to start taking lunesta about 9 months ago. It does not put me to sleep by any means BUT it works similarly to a benzo (klonopin) in that it works on the gaba receptors in the brain, hence suppressing 'overfiring' of the gaba recptors perhaps? (i find it hard to explain things these days due to the diminishing cognitive abilities). So.... if i am having a really bad sensory overload day (which is a tiny portion of the multitude of daily symptoms), i will take a lunesta during the day and within 15 mins my sensory overload and any panicky feelings are subsided to a point that i can tough through it. And then ill take a lunesta at bedtime to remain calm, as night also brings about abnormal fears and worries. (i.e. many nights im so paranoid that i look out the windows alllllll night long due to the intense fear of someone breaking in... and well, much more to it than that and i think you might have those same weird intense fears like me at night... plus im a night owl since i was kid too). I have discussed taking the lunesta up to twice a day with my therapist and the doc who prescribes it.... as I am completely honest and since it is addictive too, i wanted to make sure they would be ok with it and lo and behold, they are ok with it and agree with me upon taking it up to twice a day, since at this time nothing else 'calms' my sympathetic system down. I refuse to start back klonopin until after my vanderbilt appt in feb.

Only in the past month or so have i added the trazodone (which i use to hate cuz it would drain me even more)... i had to do something as my sleeplessness was killing me and i started to get afraid i might do something rash and without thought just to sleep a few hours...... so, i added the trazodone hoping it would do the trick..... and i have found im sleeping much better with this combo; although i still have sleepless nights still.

I too am like you.... lights, noise, movement of other people, things, tv, myself; someone talking, touch.... it all goes in overdrive alot even still now several times a day. I usually have to cover up in bed, lay so perfectly still for hours and beg no one to bother me and allow me to tough it out, otherwise, i might harm myself in all honesty just to try to attempt to make that suffering go away... yes, it is that horrible and the suffering and agony of that part of this disease has shocked me these past many months. (not suicidal... just desperate)

I also have tried all herbal and natural remedies out there for sleep... only to have the same cause and effect.... the intense over-firing of my sympathetic system.

I will look up unisom though right now.... can't remember if it has the same type of active ingredient as benadryl, etc.....

hilbiligrl

Jeannika~ i just looked up the neurofeedback..... im very curious (as, im in the same boat as Chaos.... ive tried meditation, positive thinking meditation, deep breathing... yet nothing works for me).... Can you briefly explain what one of these sessions is like? Do they require any part of the head to be shaved? (cuz i saw pics of the wires attached to a guy's shaved head on widipedia... lol) I seem to only respond well to klonopin and nothing else. Stress is a killer for me.... 2 years of intense, constant, severe stress in every single area of life, school, work, family, hubby, kids and their school problems, plus health.... put me in a downward spiral for about a year and half now. I am tough and strong willed, but apparently my body isn't... ugh.

But im very interested as to what a session is like.....

much thanks

hilbiligrl

radiohfan~

you have have meant to ask that last question to autumn but I wanted to respond as well. The side effects as well as describing the sympathetic activity increasing from this med for you, rings so true to the ears for me with ANY drug i try. When you said that, i was thinking of many times of trying many different meds, yet having that same sort of side affects (mixed in with other side affects). The intense increase in sympathetic activity seems to be the forefront for breaking me into tiny little pieces and have me crying like a baby. Wow, im so glad you mentioned this, so as i know what to expect. Right now, i can't seem to differentiate between what is worse and more severe, the constant urination over and over or the sympathetic activity going massively through the roof! A side effect such as this: I would not be able to tough it out with any drug. But i wander, if it is possible for someone to tough through the increase in the sympathetic firing, if this effect would die down after that initial first week or two? hmmm........

As far as my blood pressure. When i stand, my systolic decreases, while my diastolic increases (and my heart rate increases as well). I have experienced some increases in the blood pressure every now again, but not near as much as watching the systolic decrease by as much as 30-40 points, while the diastolic increases as much as 10 or 20 points. I suspect I have hyper-pots, yet i dont seem typical of the high increase in blood pressure..... however, i have a question for well, anyone. If my blood pressure isnt sky high, why on earth do i feel my heart beating everywhere in my body? i feel it and see it in my eyes, head, ears, toes, you name it, i can feel it pounding everywhere alot throughout the day.

When i was in my severest of episodes, i did notice this.... that my bp would go from 124/65 while laying, to 145/115 when i first stood, but after standing a few, the bp would drop by a goo 30-40 points, this fluctuation seemed to continue for a couple of months . I have slowly weaned out of the severest of long term episodes (although by no means am i functionable for the most part even still yet) but and i havent had that sky rocket in bp in about 2 months, except once or twice. Keep in mind, it seems i am ever changing with this disease, nothing seems to 'stay' the same.... however, these past 2months, when an episode hits many times throughout the day, when i check my bp immediately... again, the systolic is about 90-100..... usually it would be normal at about 120-130... diastolic remains from 60-80

sorry i talk a heck of alot..... it's just ive battled this for 8 years without help from anyone till i came here. This board has been a true godsend for me and it's what helps me hold on till i get back to vanderbilt.

hilbiligrl

I have this issue as well.... I think i was describing it a tad differently. But the past few weeks it seems to have gotten more noticeable. I was just asking myself the other day if it one of the many many symptoms. However, since it hasnt really been that bothersome, i usually shrug it off until it starts to be bothersome, then i'll start pondering on it and asking questions. Hopefully this one will be one of my lesser, infrequent symptoms.....

hilbiligrl

firewatcher~

thank you for your post.... it is indeed very encouraging. I flat out suck when it comes to proper eating. I have such a craving for breads and sweets, that i give in alot. However, my hubby and I went on the 'body for life' diet a few years back (mostly because i was so sick and so weak all the time and i thought it would help, this was before i was diagnosed..... and my hubby has heart failure too, and he needed to lose some poundage as well)...... we stuck with a clean diet for a good year, as well as done mild excercising on the treadmill and my bowflex. We ate 5 small clean meals a day, but one day a week we allowed ourself to have a soda, sweets, pizza, whatever, but not go nuts on that day either. Over all, i felt somewhat better as far as strength. I did feel clean inside as opposed to not feeling clean inside for many years and now for the most part. But i seemed to never get better though, i remember telling hubby one day that i still felt so tired, weak and drained all the time and i was still having episodes and weeks of down time.

I am noticing though more food allergies as i go along and noticing what im calling 'stomach attacks'.... as if my stomach is like a deep fryer and all that popping and cracking and gurgling is going on in my stomach 24.7.... ugh, its just aweful plus the bloating..... im thinking it may be sugars and breads or gluten.

My hubby and i have had a long talk about going on the anticancer diet and we have both agreed we are going to start this and be strong about it and stick with it... as he is feeling crummy here lately and gaining more weight himself. I did feel better on a clean diet, and i crave it again, cuz i hate this unclean, 'my body is packed full of chemical' type feeling all the time. I can even taste the chemicals in water and processed foods, literally. My problem is, right now, i can't even stand up more than 2-3 mins to cook and cooking has been out of the question for quiet some time now. So, we are trying to figure out meals, snacks, that can be quickly prepared... any ideas?

I feel like once we stick with the clean diet, that i will improve some, hopefully enough to start cooking and cleaning again, as i can't stand to lay around so much... its horrible!

Do you implement any kind of desserts or sweets? If so, do you use trivia, splenda or something like that maybe?

thanks again

hilbiligrl

Also, i've had panic attacks all my life and can't pretty much (most of the time) tell if my 'episodes' are anxiety or if they are the disease.

************ ooops... another reason why i hate this disease is so many typing errors..... what i highlighted in red above... i had meant to say that I CAN tell the difference btwn my episodes and an anxiety attack... although it is confusing, i can tell.

hilbiligrl

I am personally so glad to hear that the breathing is not necessarily due to an asthma type situation. I've been told i had seasonal asthma, took combivent for years when needed, but seems it never really did the trick. One of my main complaints is the difficulty breathing. Here lately, it has been horrible, just horrible (then again, i've been in what they call a 'pots hole' for over a year without being able to function for the most part). I was going to post whether or not if this difficulty breathing is actually asthma or if it's a different mechanism causing the difficulty breathing.... i've always said and felt it was not asthmatic. Does anyone know what causes this difficulty breathing????

Also, i've had panic attacks all my life and can't pretty much (most of the time) tell if my 'episodes' are anxiety or if they are the disease. My attacks come out of the blue of course and usually the anxiety is non existent UNTIL my episodes start..... however, after they start massively, all kinds of symptoms pour in, therefore, starting the panic, therefore increasing the severity, therefore causing more panic and so on and so forth in this vicious cycle of feeding into the other. I know that if i don't get a grip, im gonna get dangerously bad really quick. When this happens, i call my hubby (who is towing 24/7) and i usually say 'im scared, you have to calm me down'..... we'll talk a min, i'll lay down and do my ever so best at calming down. So, for me, the anxiety and panic doesnt come until well into an episode.

SSRIs for me, unfortunately don't work. I'm one of those that cannot tolerate an ssri and most meds actually..... my mother can't tolerate an ssri either (she has celiac and chronns, she works great on prozac and so does my son.... but i cant tolerate prozac either). It seems that most these meds would intensify my 'adrenaline surges' and the 'flight or fight' feelings a hundred times more it seemed. I have tried all ssris out there.... all of them, and others..... only lexapro worked initially the first time for about a year, then it just wasn't working anymore (and i loved who i was on lexapro... really really worked for my anxiety, social anxiety, fears, worries, etc...). We attempted trying it again 2 more times in the last 8 years but to no avail. It seems that im so sensitive to these type meds, that everytime i take them, i have the scary, rare side effects of it and lots of them.... they would make me intensely more sick. The only thing that every worked and worked well for me was a benzo, klonopin... highly addictive, but it is a miracle drug for me because i had NO side effects and wow, i was so calm all the time and never had an autonomic episode while on it. I'm hoping the docs will be putting me back on it, since they have found out what's wrong with me. (i also tried buspar and it became apparent that this drug really, really made me very very very sick.... very sick.... i am scared to death of that drug..... so scared that if a doc mentions it, I get openly irate with the doc and tell them where to get off at and i usually am not 'mean' to anyone.... lol.

We are each so very different in our symptoms and with meds too. Even though im highly sensitive to all meds, i still want to try anything that's mentioned on here. I have been jotting down any and all suggestions on this board for quiet a few months now. I'm hoping to try some new meds with my upcoming appts this next week or two.... or until after i have my testing done at vanderbilt in feb.

Good luck with trying to sort this out...... i know that others on here, their episodes seem to be provoked by an anxiety attack, but mine seem the exact opposite order. I also know how confusing and overwhelming this whole mess is.

hilbiligrl

Hello KC mom:

thanks for the update! Im glad it seems to be working, yet I understand how you are afraid it may just be a 'cycle'.... let's hope it's the med and not just an 'up' period of pots. I sooooo can't wait to try this drug and florinef too! I never would have thought they would use a drug that is prescribed for mysthenia gravis for our disease, but it kinda makes sense, as i was tested for mg several times but always passed.

Again, so glad it seems to be working.... if any changes, do update, i keep a close eye on these posts!!

many blessings

hilbiligrl

Autumn~

I too don't drink but very little. I know im suppose to drink tons of water, but since i was a wee child I have only been able to maybe drink a glass a day of something. Water makes my indegestion worse, or it just burns my stomach..... so, gatorade, but even at that, i still can't force myself to drink even maybe 1/4 of the total amount needed in a day. If i force it, then i throw it right back up... i never get thirsty.... ever. The last trip to the er, i had spent a week without being able to swallow. I could only get down a few swallows of gatorade a day, yet, i urinated so often and so much, that one: measured output was so much greater than input and two: i urinated so much and so often that all i could do was cry. (and im not a cryer, im a tough as nails kinda person). After a solid week of that, rescue squad was called and when i got the the er, they said i was hydrated and NOT dehydrated... how could that be??? I was in shock. This is only one of my very many symptoms..... but one that has wore me out over the past 2 years. Can't wait to try florinef.

hilbiligrl

I have a quick question to add about Florinef. I think I read on here that florinef helps those to urinate very very frequently. I have had this issue for a few years. It disrupts EVERYTHING i do or well, did when i was able to do things. I can drink a glass of fluid and urinate it out within mins. I go and go and go and go and go and go.... it really tears my nerves up sometimes because of the intense urge to go as well as the intense frequency. Just asking to make sure if this was the drug that helped with this particular problem?

thanks

hilbiligrl

Thanks everyone for posting. This makes i think day 4 of going back on the zantac and zyrtec. I still am showing improvement on over all 'extra severe symptoms' that seems to be set aside from the normal ones associated with the autonomic dysfunction itself. For example..... i was in this constant severe episode for several weeks, while i wasnt taking this regimen.... its kinda hard to explain fully. Today i still remain less symptomatic, but still headache, severe exhaustion, hurt all over and a few other symptoms that always seem to remain 'baseline' it seems. But, the extra severe symptoms such as : focus, memory, confusion, the head to toe 'sickly rotting' feeling, the restless legs feeling, the eye pain, nausea, and many more.... those seems to have subsided and now for 4 days my 'level of severity' has lowered and things have been bearable to the point of psychosis for the longest time.... i was in such a poor state that i decided to take down my FB for good due to being so upset at seeing so many people living normal and having fun, when i am basically paralyzed a majority of the time, along with a milion severe symptoms.

I still can't stand for more than a couple of mins or so, or seem to be able to do much, and a few other things, but i don't feel so horrid and scary. It seems like where there were 20 symptoms on a daily basis, in a severe level.... it has now cut down to maybe 10 daily, and the severity has dropped to a level i can tolerate for the most part. (im telling ya, i was unconsolable for many many weeks there i was so bad). I do hope these 2meds are what's causing the difference and that this is just not another 'cycle'. And i only hope i can start being able to get up and take showers and maybe accomplish a few things around the house. but, i think i'll set my goal as: making sure first and foremost that i dont miss any doc appts next week..... all else, i can't push it. my body says 'its not ready'.....

mack's mom: it may have been your posts that i caught on to couple months ago about the zantac and zyrtec and the mcad.... i had looked it up (as every post that seems 'right on' with what i do, i will research the crap out of whatever is mentioned)... but i had looked it up and it made so much sense. Your recapping in this post refreshed a bit of that memory (and yes, despite how bad or how well i feel, my congnitive function still remains quiet poor). But, i intend to re-research it, especially before i go to doc appts next week and week after.

i will push each doc to test, and see who will actually agree to it..... I have battled it out with my old doc for years, she just wouldnt agree to any more testing. I had to push her to test for metals, toxins etc finally several months back due to having breast implants.... (many people kept insisting this was caused by my saline implants...) but all those tests showed up normal..... but after that, my doc would even refuse to write a script for stomach meds, phenergan, etc. The only thing she would prescribe was my inhaler. so, trust me when i say, i have been through the mills and back with my doctor and those specialists and er docs who have been blessed with my presence! lol. We have a heart center that's ranked in US's top ten, as well as a pharmacy school and medical school here in our area, yet the docs still remain as close minded and conventional as ever! And their egos, can't get through them..... such a sad thing.

I will keep everyone posted, as i have such a big mouth.... lol

hilbiligrl

ooops... i re-read my post... i highlighted in red what i messed up.... i had meant to say that before being on the zantac and zyrtec both times, that my symptoms were so numerous and intense and severe that i was almost in a state of psychosis..... and now it is bearable again....

so sorry, it seems i make many mistakes anymore when communicating....

hilbiligrl

Thanks everyone for posting. This makes i think day 4 of going back on the zantac and zyrtec. I still am showing improvement on over all 'extra severe symptoms' that seems to be set aside from the normal ones associated with the autonomic dysfunction itself. For example..... i was in this constant severe episode for several weeks, while i wasnt taking this regimen.... its kinda hard to explain fully. Today i still remain less symptomatic, but still headache, severe exhaustion, hurt all over and a few other symptoms that always seem to remain 'baseline' it seems. But, the extra severe symptoms such as : focus, memory, confusion, the head to toe 'sickly rotting' feeling, the restless legs feeling, the eye pain, nausea, and many more.... those seems to have subsided and now for 4 days my 'level of severity' has lowered and things have been bearable to the point of psychosis for the longest time.... i was in such a poor state that i decided to take down my FB for good due to being so upset at seeing so many people living normal and having fun, when i am basically paralyzed a majority of the time, along with a milion severe symptoms.

I still can't stand for more than a couple of mins or so, or seem to be able to do much, and a few other things, but i don't feel so horrid and scary. It seems like where there were 20 symptoms on a daily basis, in a severe level.... it has now cut down to maybe 10 daily, and the severity has dropped to a level i can tolerate for the most part. (im telling ya, i was unconsolable for many many weeks there i was so bad). I do hope these 2meds are what's causing the difference and that this is just not another 'cycle'. And i only hope i can start being able to get up and take showers and maybe accomplish a few things around the house. but, i think i'll set my goal as: making sure first and foremost that i dont miss any doc appts next week..... all else, i can't push it. my body says 'its not ready'.....

mack's mom: it may have been your posts that i caught on to couple months ago about the zantac and zyrtec and the mcad.... i had looked it up (as every post that seems 'right on' with what i do, i will research the crap out of whatever is mentioned)... but i had looked it up and it made so much sense. Your recapping in this post refreshed a bit of that memory (and yes, despite how bad or how well i feel, my congnitive function still remains quiet poor). But, i intend to re-research it, especially before i go to doc appts next week and week after.

i will push each doc to test, and see who will actually agree to it..... I have battled it out with my old doc for years, she just wouldnt agree to any more testing. I had to push her to test for metals, toxins etc finally several months back due to having breast implants.... (many people kept insisting this was caused by my saline implants...) but all those tests showed up normal..... but after that, my doc would even refuse to write a script for stomach meds, phenergan, etc. The only thing she would prescribe was my inhaler. so, trust me when i say, i have been through the mills and back with my doctor and those specialists and er docs who have been blessed with my presence! lol. We have a heart center that's ranked in US's top ten, as well as a pharmacy school and medical school here in our area, yet the docs still remain as close minded and conventional as ever! And their egos, can't get through them..... such a sad thing.

I will keep everyone posted, as i have such a big mouth.... lol

hilbiligrl

Hey Leieze (i hope i spelled that right... )

I havent had an acute attack in the past few days, but, when i go into one, I am definitely trying this neat little trick. I am wondering if something so simple will actually help pull me out of a severe episode. Im glad you posted this, because, actually, i had already forgotten about this trick! I am going to have to seriously start a journal of 'trys' so that i can remember the pointers i read on here....

Im glad it worked, you will have to let me know if it continues to work and I def let you know when i try it too.

hope you are having a better day!

hilbiligrl

I have another question. I had thought indian food was hot and spicy and hurt the stomach..... anything and everything hurts my stomach and causes acid indegestion, even water..... would this aggravate an already ill stomach?

thanks again

hillbiligrl

To Mack's Mom: what kind of tumeric did you buy? like maybe from a health food store or online?

thanks

hilbiligrl

ONE MORE IMPORTANT THING.....

Here's my agenda.... Heart doc appt next week (local).... new family doc appt (with rare case doc) a few days after (local)..... then vanderbilt autonomic clinic feb 17 (6 hours away)..... then another heart specialist doc appt with a diff heart doc after that (same group as first heart doc, but this appt would be with one of 2 specialists inside the heart center and its local)......

ok, of all these docs i set up..... who would i get to test me for MCAD and how do they test?

many thanks

hilbiligrl

I can't remember who it was that mentioned to take a zyrtec and a ranitidine every morning for MCAD. I have no idea if i have it, but i suspect i do. 6 or so weeks ago, i started taking one zyrtec and 150 mg of zantac (ranitidine) and I did notice improvement.... but i still remained more bedridden than not. So, a couple weeks ago, i ran out of money and out of zantac, so i stopped taking both.... and it seemed i lapsed into what i call 'ER days' or severe long lasting episodes, where the bedridden part increased to 90-98% of the time. Then 3 days ago, i start taking the zyrtec again with the zantac and the very next day, im kinda 'pulled out' of the severe paralyzing, long-lasting episode and today i feel even more better. I honestly can't say for sure that this is MCAD, and can't predict if i will continue to feel ok (my ok, or good days, or equivalent to a normal person's bad days), as, with this disase, nothing is predictable for me.

Anyways, to get to my point, i have a heart doc appt which is the first heart doc appt since diagnosed with autonomic dysfunction and another appt with a new family doc a few days after (i fired my fam doc of 10 years a month or so ago and submitted my case to a reknown rare case doc in my area, who screens his patients first and he accepted me.) For the past 2 days since starting back on the 'mcad regimen' so to speak, im not as symptomatic..... so, should i stop the zyrtec/ranitidine before i go to the docs appts in order to possibly be more symptomatic? And if so, should i just stop now, since the appt is a week away?

Again, not sure if the zyrtec/ranitidine is what's causing my good days.... but it kinda seems like it. But don't get me wrong, i still have severe episodes while taking it, but the 'whole picture' and vast array of severe symptoms seems to lighten up quiet a bit, but my body still tells me that i better take it easy.

My goodness i hope this all makes sense to someone.....

thanks everyone...

hilbiligrl