hilbiligrl

Shoegal, You kinda sound like me, but i do drive, because mine are infrequent. The last one i had was at the drive thru with my 12 and 14 year olds..... BAM eyesight gone! Had to get my son and daughter to help me pull out of the way and call my hubby to come and tow us home. That was aweful..... it was the first and only time it happened with my kids out somewhere. tennille

Hey Bev Ray, Once you have signed in... at the top right click on your user name, then choose 'profile', then click on 'edit profile' on the next page it takes you to (upper right handish area), then the next page that comes us click from the list on the left hand side that says "change signature".... that's where you put in all your info and save it. tennille

To julie and others with the mcad and singulair: I took singulair once for a while, but when it first came out. I had some weird side effects with it and it seemed it wasn't helping with my 'unable to breathe' problem. Just curious.... what does it do with the MCAD? Like, i understand that my zantac and zyrtec are the H1 and H2 meds and if i dont take them, i start feeling worse.... when im taking them, i do better of course. Would love to hear what it does with MCAD, if you guys don't mind..... thanks a bunch! well wishes tennille

This is amazing! Thanks so much for sharing.... as I will be printing this and taking to my doctor! He asked about this page and how i was getting my info.... so my doc hopefully will be visiting here and learning too. I am tickled to have read this post! thanks again! tennille

oh, i had meant to say in this that my auroras completely blind me for an hour or two.... i cannot see, anything. I have even been stranded in the middle of walmart and at a drive thru when these have happened..... i call my hubb or mom to come find me and take me home.... lol..... but it's always traumatizing to me to lose my vision.... always.... tennille

Hey yal, I have had migraines since 7th grade and am now 33. Every migraine i have ever had always begun with an aurora. At first it starts off little in my eyesight as a silvery/grayish circle that 'blinds' out the vision, and then within about 15 mins, then the little circle has completely taken over my vision.... that would last for an hour or two and then the migraine pain would start. However, for several years now, I am having the aurora, but with no pain.... I was told that these are called 'silent migraines'. So, it's been 21 years now, and i STILL never get use to these auroras. If i am out somewhere, and this happens, i have to call someone to come get me.... or i get hubby to come tow me home due to not having any vision. Im honestly not sure if i would rather have the pain or the aurora.... the moment one starts, i get so so so panicked.... i hate it. But, it always passes. I do notice, that if i eat more msg's than normal (i love slaw-hot dogs, which hotdogs have lots of msgs in them), then i notice an increase in the auroras. I know this doesn't really help much.... but wanted you to know you are not alone! I always used imitrex for the full blown migraine, but since there is no pain anymore associated with the same auroras, no doc has ever 'treated' it. As a matter of fact, my old doctor that i fired, had never heard of a silent migraine.... that shocked me. Many blessings, tennille

One more thing.... i do see a therapist and a case worker too..... for a good 2 years now... they specialize in chronic illnesses and it helps so much to see them and talk to them.... tennille

I had this same issue.... my long time doc, who was a personal friend, just got 'tired' and 'fed up' with me..... so, as she started acting like i was a looney case and treating me like one, i fired her. Through a disability psych doc, he told me about a rare case doc in my area and to call him. I called his office, had to submit my info, records, etc and after 6 weeks of waiting, they called and said he would accept me as his patient (as he no longer accepted patients, unless it was a rare case that he thought he could learn/help from/with. He is an integrative doctor, he uses all methods whether conventional, holistic, chinese.... we have even talked about the marijuana pill. He is also a professor at our local medical school and he has had many awards for his passion of rare cases and teaching his students about rare cases. I've only been with him since decemeber..... I see him once a month, but if i need to get in sooner, they get me in with one of his associates. He is willing to learn about what i have and he believes me and treats me like a person with an education. I so hope, he will always be here for me until he stops practicing. He has such an open mind and he and I both will trade theories, etc about our next steps.... etc. I had to search, ask, ask and ask..... many phone calls... took me about 6 months to find a good doc. I hope you find one soon! God bless! tennille

Oh my, i am so very sorry to hear this. My heart goes out to you. I hope you can get all the info that you need. Thinking of you, and sending prayers your way. peace be with you..... tennille

hello misstraci, Nice to meet you, im tennille.... a best friend to klonopin.... lol.... but seriously, i am. Klonopin has been the only drug that has subsided many symptoms for me. (in addition to some meds targeting my mcad too). It does work on the gaba receptors of the brain... I once could have explained it in detail, since i was heading off for pharmacy school and had worked in a pharmacy for quiet a while, until i became bedridden for over a year (doing better now).... however, due to a spike in my illness lately, my brain fog just downright ***** right now. I take klonopin 0.5 mg twice a day... some nights i dont take it at all, as i dont want to create a tolerance. After being on it a few years ago (i had no relapses while on it) but i was taken off of it, without being weaned off slowly, and i had a severe withdrawal for a few months.... it took forever to find a doctor who saw that i needed it again (took me 3 years to finally get a doc to prescribe it here for me). Xanax, like lieze, for some reason makes me weird, dizzy and i forget everything that's happened when i take it.... odd how klonopin is so much more potent, yet i dont get the same effect. I am more calm, and it seems many symptoms are suppressed for me.... AND.... anxiety, panic and paranoia is a biggie for me, that feeds my 'spells' and starts a vicious cycle from the increase in anxiety to the increase in the severity of my symptoms. Klonopin seems to break that cycle for me thank God. Im not entirely sure why it works for some of us with our diseases and why for some of us it doesnt.... i suppose, it's due to our each and very own chemical makeup of our bodies, we are all so very different and react to meds differently, etc. If it works for you, i say stay on it. If you decide to get off of it, please insist in a very slow weaning off of it. I have researched alot about weaning off of klonopin and read that weaning off with valium is one of the best ways.... and weaning off can take like a year or months or longer... from what i understood. Im doing better on it than without it.... it's proven now, so my doc is going to keep me on it, for ever how long? i have no idea, as i am at his mercy. Our city has developed doctors and the medical system with being very overly paranoid about prescribing these benzos..... so, it's a battle here just to prove you need it to live and not that i am a drug seeker (even though that is how one is treated in our area if we even mention a benzo or something for pain). Im over talking here.... hoping someone without as much brain fog as me can explain it to you much better..... that way, i can read it again and hopefully remember myself. Best of luck! tennille

Im in the same boat. I'll have a few good days, and then my mind makes me think im ok again, and then you forgot for a day or two about how bad these diseases are.... then, here it pops up again and again. Reeks havoc on my mentality bad.... it's a horrible tease for me. For a few days im planning for the future or thinking, yey, i have some functionability... then a relapse hits and im reminded again and the mind games it plays, well, i just never win. It's horrible going back and forth.... im still not use to the back and forth.... seems my mentality isn't either.... lol. Wishing you lots more ups than downs.... but find solace in that this seems to be normal for 'us' and many of us here go through the very same. We feel your pain..... well wishes tennille

Hey Lovebug, Thanks for asking and thinking of me, one of the reasons why i love this forum. Hubby is doing much better and in the last couple of weeks has started to pitch back in with running the business and actually a tow or two. He had a rough bout after the surgery, but as of today's checkup for him, it seems things look good from here with his heart. I had been running our towing business since his open heart surgery (but at a time that i had started feeling better again).... I've answered more than 30-40 calls a day, have done the towing on my own, handled officers, worked wrecks, worked the office with insurance adjusters and salvage companies, etc..... 24/7 for almost 3 mths. We thankfully have a relief driver 3 days a week, but one that causes tons of stress, nonetheless, thankful for at least some paid help. The 3 days he runs calls, im practically running the business from home, in bed. Everything has been doing better, despite having some of the most horrible days i have ever had to experience in my entire life with this disease and juggling all of this, (kids, doc appts, billing dept phone calls, blah blah blah).... seems that i could bounce back during those 3 days.... without having to actually tow and work wrecks, i could rest in bed and answer calls from the house). But now, unfortunately, i seem to be in a small 'attack' that's lasted a few days more than i expected. So, back to having a little time to get on the net and read up on as much info as i can on here. Felt so good to be able to accomplish so much (i was a huge multitasker, 24/7 work or school... go go go).... but of course, life is so different now with so many limitations and down time. All in all, im hanging in there, perhaps holding on to the dire thanks for this forum because it has been the only, and i say only, TOOL that i have had to better understand this disease and know mostly what to expect, which is ironically what is unexpected mostly for me (new symptoms or changing of the feeling of the symptoms).... it is because of all of yall (excuse my southern accent... lol) that i have a better grip on reality, a better grip on this disease and a better grip on myself. I may have gotten off subject, as the brain fog is at it's worse.... even customer's and officers, etc can tell somethings wrong when i talk, because i can't find like, every 3rd or 4th word when talking and it is so embarassing to try to speak complete sentences anymore. Ugh, i hate that, coming from a straight A student throughout high school and college, it is so humiliating... Overall, things are pretty ok... taking the good days with the bad days, praying there are more better days than not Thank you again lovebug, I hope you are well! Much love, tennille

Hello lizababy, I too am interested in what others hopefully will say, as these women (and some men) on here are amazingly intelligent. I do know, i crash and i crash hard in warm weather. I cannot be out in the sun more than just a few mins or i start feeling a myriad of symptoms starting and fainting coming on. I always feel better in colder weather, than warmer. Hence, perhaps is why i've hated summer since i was a child, it just made me miserable. My own personal body seems to not be able to keep itself at a comfortable degree as i get hot and then cold, over and over all day and all night long. Turn on the fan... 1 min later, turn off the fan, 2 mins later turn on the fan, 2 mins later turn off the fan... so on and so forth. Drives me crazy at the present. You should hear that most of us here cannot tolerate heat, it's one of the biggies (in my humble opinion)in our disease(s)..... nice to meet you, wishing you well, tennille in tennessee

firewatcher, thank you for sharing this..... i read the whole story. I know that some days i wake up and there will be a week gone that i can't recall anything whatsoever. I used to get very scared, but am now quiet used to it.... mostly i just ignore it and try to go about my day, cuz if i try hard to remember, i just get upset and scared..... such a wretched disease, yet my best friend in life.... a cruel best friend.... lol thanks again tennille

Leize, sorry i havent talked to you in such a while... but i guess you knew the hubbys heart surgery and then all the sudden the business was totally dropped on me in every aspect. I stayed up for a while but im down again. I've been reading up on your leize, and im so sorry your husband is so cold and selfish. Wow, his day will come when he needs that help and compassion....... I do so hope you can count on your parents if worse comes to worse, as, that is what i retreat to when things go bad. On the anger.... i have never had anger issues my entire life until these past 2 years.... i get so angry, so fast, and its lots of anger.... i wanna lash out or punch someone or something, but then again, i dont have the strength to even express my anger or emotions most of the time. Somehow i manage to keep it inside, but boy is it something to fight with and does it ever surprise me, as I am the most patient person...... i could be having a great day and all the sudden, anger will rage for a bit, then waxes and wanes. I believe it's our disease. I hope you can pull out of your spells soon, and/or gradually get better somehow. How i wish someone out there could figure all of us out and find that 'fix it' for us..... peace be with you leize, thinking of you tennille

I managed to have a couple of about 80% functionable months but due to the heat increase, its in the high 80s and so humid here. I noticed since i was i child that i despised summer and how miserable i felt outside in the sun. Each year is worse. I honestly avoid the sun like a vampire. I have been having to tow and manage our 'family' towing business since hubbys open heart surgery at the end of feb.... and well, i finally went down 3 days ago and have been in bed since. If it's cool outside, i feel halfway decent. When it's hot, im never outside for more than just a few mins, then i gotta get back i the air or i cant breathe or im gonna pass out on someone. Funny though, when im inside all the time, i will go from freezing to burning up, over and over all day long, even with the heatpump air setting on 72.... this really aggravates me. So, i too, am really bad again..... and i was just thinking that i was entering a 'remission' type period..... i feel ya naomi, and everyone else. I think right now, the thing i culd use most is peace of mind..... that's really ripping through me these past few days that i cant walk or shower or eat or spend time with the kids, or manage the business. I feel like a loser all over again.... and well, many other mood/feelings/emotions/frustrations. I guess i just hope for the better days and that they become more often than not. I hope that for all of us. tennille

wow you guys, i had no idea zyrtec caused irritability. I have always noticed when taking my mcad 'regimen' that includes the zyrtec that i have anger out of no where and alot of irritability and this has never been my norm. I just asked a question regarding these meds, but didnt see this post. Glad i read it, cuz i think i'll try claritin or allegra from now on. You guys have the best advice! And i didnt realize i could take this stuff at night.... i've been taking my zantac and zyrtec at 8 am every morning.... but having bad bad insatiable hunger all day long that has made me gain some poundage in a short period of time. Glad i read this post.... thanks gals.... and good luck with your all's sons. tennille

Hi all, its been a while...... For those of you who have and are familiar with any of the meds used for MCAD..... I was taking the doxepin (its a strong H1 and H2 antagonist) at my worst, it helped me get out of the worst of it, but after 5 weeks, i could no longer take it as meds of it's nature don't do well with me. I am now taking again first thing of the mornings 300 mg of zantac with 1 zyrtec. The zyrtec is making me hungry all day and all night long. I've experimented with this combo 3 different times now and it works, it helps me function a whole lot more than if i dont take it. So, do any of you guys/gals out there know what I could take in place of the zyrtec that DOESNT cause such an insatiable appetite? The zantac is an H2, so the zyrtec H1. I know that i cannot take benadryl nor atarax (they drive me insane).... does claritin or allegra cause the appetite to increase? Or any advice you guys could offer, i would so grateful.... i've gained 7 lbs since i started my 'regimen' again, and after doing controlled 'experiments'.... i know for certain and H1 and H2 taken early in the morning for me works wonders. If i dont take them, im down. But, i find that the insatiable hunger is overwhelming and uncontrollable.... ugh. Please help! thanks! much love to you all tennille

Hey you guys..... I had ran into a woman whose car i towed from a wreck who has an autoimmune disease and she and I share the same symptoms, etc. She told me about the regimen she was on and i took notes. So, i ordered maca root, acetyl L-cartenine, coQ10, niacin, tumeric, wheat grass and flaxseed oil. All in capsule form from a reputable company (swanson).... except the wheat grass and i got it from the local health food store in powder form and have been drinking 1 to 2 glasses of the wheat grass a day. Does anyone have any knowledge of if i can take all these together every morning.... or should i perhaps take some of the morning and some at night? I get very paranoid when taking things all together. Also, my nausea is getting worse to where i am vomiting now and that's something i have never done is actually had to vomit. Phenergan just isnt cutting it.... is there anything that you guys recommend? I am trying to talk my doc into trying me on mestonin...... (i was reading it helped some with nausea and vomiting.... but i actually want to try it due to my severe weakness daily)..... im pretty sure my insurance won't pay for zofran even if generic. Any advice i would appreciate very much.... thanks everyone tennille

hey girls and all.... ive been waiting so long for this post! I started experimenting with cannabis and my 'possible DYS and CFS and mcad'. I have found that just hitting a joint maybe 3 times does amazing for me. It give me my energy i need, takes away all my symptoms and just makes me feel normal. I can be in a severe attack (which is suspected as a seizure now) and i can be totally paralyzed from head to toe and not able to communicate..... this can last for days, hours, sometimes weeks. Well, i realized, that when an attack happened, i could hit a joint about 2-3 times and in 3 mins im up and walking, talking, and almost normal. For me, it's amazing. But i cant smoke too much cuz i just dont have the desire to be high. But seriously, if i wake up really sick, i might hit a joint 2 times to kick away the spells.... if i have an attack, i'll do the same.... and its like a ragdoll coming to life. I mentioned this to my new doc and he was very interested in it. We are gonna try the marijuana pill in the future, but i have a feeling it wont work as well.... and id rather have the real stuff and not something chemically made. In my worst spells, ill take it daily if i have it. But these past 2 mths, i havent needed it. It takes away my weakness, nausea, stomach pain, dirrehea, the horrid sick feeling inside and out and many other issues as well. Oh and it takes away my breathing problem.... i.e. wen i have a spell and cant breathe right and have a hard time breathing, after hitting a joint, i can breathe just fine. Usually 1 to 3 hits in the morning will do me all day.... sometimes though i get really sick at night, and i'll take 1 or 2 hits too. But never around the children.... and i never drive for at least 2-3 hours.... usually i hit it before i shower and it takes me a good 3 hours to get ready due to the illness. It works wonders for me. Unfortunately, after i left hubby, i will no longer have access to it. Its the only med that helps me inside and out, the illness as a whole. Have no idea what mechanism is working the wonder, but i wish it could be singled out and a drug made that specifically targets whatever needs to be targeted (i hope that made sense)... anyways.... if i smoke too much, it makes me have anxiety.... so i never go more than 3 hits. I can also talk and walk alot better too when i take it. Just amazing how it works for me. Pulls me out of a paralyzed attack almost immediately. thanks hilbiligrl

dearest lieze.... i am so with you. The verbal abuse is getting so much worse, its every day now, almost all day long, but then he turns it around as if i am the one who initiates it. Im a quiet nervous person who runs from conflict...lol, working hard on getting financial help for him, running the business, etc..... and the abuse is getting worse after this surgery. I can't even sit and have a nice talk with him about anything. Yes, i am trying to hang in there, and plan for a future without abuse... just don't know where to start with a disease where i can sometimes work, and sometimes not.... ugh. I feel for you lieze, we are in the same boat.... with no oars. sigh.... love ya gal tennille

wow... ladies... its been about 5 weeks now and its been a **** of a 5 weeks. Lets talk about vandy first, and as most know, if you read other posts of mine, you will know which autonomic specialist i saw and because of my negative experience, i will not mention his name in this particular post. I went to vandy hoping for many autonomic tests, that was what i was told. I was expecting a full day of tests. We went, stayed overnight, was there at 8 am. I ONLY had a 35 min test, one was breathing (which i felt like i was dying and it sent me into a spell, but didnt seem to effect my heart rate, but bp remained low), and of course they done a 5 min.... 5 MIN ONLY POOR MANS TILT TABLE TEST. AND THESE ARE THE ONLY TESTS THEY WOULD DO. My hubby and i waited all day to hear from Dr. you-know-who and finally came my appt with him. I was so hopeful. He was a complete arrogant ***. I liked him as a person, but as a doctor, no. He flat out and told me it was impossible to urinate 32 times a day... then went on to say that several of my 8 years of symptoms were flat out lies and said my autonomic testing was normal. Well, let's see.... 35 mins total of testing tells him all this that he needs to know??????? I looked at my husband for support or for him to take up for me.... notta. I am still so very upset with hubby for remaining silent, while i took an arrogant bashing from this doc. Basically i was told, he can't diagnose me with DYS... but he would safely say, i could have DYS AS WELL AS CFS. But recommended i needed to be tested for seizure activity during my severe attacks. Otherwise, he said my insomnia was causing this, then when i said, been there done that, already assessed and it wasnt that... then he just jumped from one thing to another. When he asked me a question, before i could answer it, he was answering it for me and going on to another question, over and over again. It was a scene from a nightmare and i was wide eyed, mouth on the floor, looking at hubby for help cuz this guy had me so confused with one question, that i couldnt get to others as my mind couldnt think fast enough. All, in all, i got nothing from them. Wasted money, wasted trip, wasted time. I left inconsolable. This doc clearly wasn't out to help me in any way and his arrogance was absurd. although, as a person, i did like him... i just hated how he treated me and talked down to me and accused me of lying aobut several symptoms. My new integrative doc finally did prescribe me klonopin for a couple of months to get me thru hubbys open heart surgery...... he and i are still trying things for me but not much improvement. Over the past 5 weeks, hubby had open heart surgery.... went much longer than thought, lost lots of blood, rough, rough recovery. They replaced his aorta going down into the heart and put in a metal aortic valve. He was in cardiac intensive care for 7 days and during that time had to be shocked back into rythym due to a dangerous atrial fibrilation going on. Was scary. after getting out for 3 days... back to er for another shock and another 3 day stay in cardiac intensive care.... this repeated 2 more times. So, in 4 weeks, we spent most of time in cardiac intensive care unit.... had to be shocked 4 times and one time he went code blue. Now, during all this, his verbal abuse/anger was/is horrible. His family treated me like trash cuz i left for 2 hours one day to go home and take shower. I was with him every moment, every moment. had him screaming and cussing me in the hospital, and his sister doing the same when i went home after staying over 36 hours the first day/two. Put it this way, i walked out of the hospital crying twice for a whole day due to his verbal abuse and his family's verbal abuse. I done nothing to deserve such treatment and it still hurts and he has never said sorry. He allowed his sister to verbally abuse me in the ground and he told me to shut up when i defended myself to her..... bad situation. So, during this time... im fighting my disease... whatever it is now.... and i took over the towing business.... I have handled all calls, dispatches, insurance adjusters, office, releasing cars to those who got impounded by police, i have even taken over the trucks and as a woman alone, have ran them and towed cars on my own and worked wrecks to keep the income coming in EVERY DAY. I do have a relief driver a few days a week, but i still handle all aspects of the business... insurance companies, salvage companies, going to office meeting people, collecting and billing invoices and trying to pick up some business along the way. NOT ONE THANK YOU FROM ANYONE, NOT EVEN HUBBY. On the lighter end... we've finally been home from the hospital a total of 5 days without him having to be rushed back to be shocked again. Our bill, oh my, at least 200 thousand now.... have no idea how to go about that. Hubby's heart surgery has made him more of a mean man, and he is not a godly man, nor does he pray, but you would think this would have changed him.... notta. As i was saying on the lighter end.... not sure how or why, but after several meltdowns and a close call with suicide from sheer desperation of the stress... my doc put me on klonopin and i was within 1 day able to calm to a point to handle it all very well, with a few small meltdowns over the past few weeks. Somehow i started to feel postive and good again and have energy for once and was able to go go go go. Felt good for few weeks, but the past 5 days, im struggling yet all over again and i feel the episodes and sickness come on fast, especially every morning..... im fighting it so hard cuz i have to tow to provide our income. I love to tow, love it... its me and brings out the best in me... but having this disease is so freaking hard. I met a woman, whom i towed in her car from a wreck and loe and behold we have the same illness and we got to talking what works for her and how she is down for days, then can go for a few days and so on and so forth. Anyways... today, im looking up things for energy.... i feel so physically aweful.... and hubby i still on a rage mostly everyday about something. i understand his world is upside down, but he could be nice ya know. anyways.... after watching mack's mom's video on the chronic fatigue syndrome, it was so much like me, and i completely understand how someone ends up with suicide with this, due to how unreal this is. No one truly knows what we go through or how we feel every moment of our life. I never have a moment where i feel normal, or even halfway good. Gosh i wish i could find that 'regimen' for me. I guess, i'll keep on keeping on as best as i can, but its so hard. I just want to be well and get on with life, cuz these past few weeks of taking on the world, so to speak, feels so good all over and i want to continue with it, but the illness is creeping back up. I was thinking i was in a remission, hoping for a long one, but not now. and i just dont know how to fight this anymore. One good thing, is my integrative doc is standing by my side and listening to me and believing me. Ok, i think i have to go on a tow.... better get.... much love to you all... hope all is well with everyone. tennille hilbiligrl

Leize, Hey girl, i tried to send a pm but i think were they changed the server, it wouldnt let it go through. So sorry you are at a mess here. I honestly dont know what to say or recommend. I know klonopin works so well for me, but im not back on it yet. Perhaps you can try teeny tiny doses, or whatever a doc recommends. I don't seem to have the reactions to food like you do.... i was thinking, is that an mcad thing? but i have no idea. Just wanted to let u know i was thinking of you lately and wandering how you are.... sounds like you aer stil in a pots hole...... i hope you feel beter soon. Sorry i couldnt help with any suggestions, but well my illness is like the riddler from batman, its all riddles that can't seem to be answered and constrewed...... oh i hope you start feeling better soon. much love and hang in there...... tennille hilbilgrl