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Everything posted by hilbiligrl

  1. I have the conscious paralysis for as long as my dys has started. It comes with my 'attacks'.... or use to come with them. Since starting the klonopin & mcad regimen, i haven't had this particular attack in full force in about a year now. Although i have very small ones that last a few mins here and there. But the ones i had for years, sometimes i would be in paralysis state for up to days or weeks without being able to communicate with anyone. No one has still yet figured out what exactly it is, that i can be 'aware' cognitively and consciously but my whole body and it's functions ar
  2. I have had a really good feeling day. My body for the first time in i don't know feels 'quiet' inside. Like it's not screaming inside. I am still experiencing some side effects, but the benefits im getting are outwaying the current side effects. Overall strength increase, yet does not touch the 'exhausted' very tired feeling. Also my symptoms have lessened considerably. I could say more about the benefits and side effects today but im tired. I've been up more today and yesterday than in a while, doing a few chores but taking long breaks inbetween. Today i had to take a small nap. i st
  3. katie, Do you mind if i ask you what reason your doctor prescribed the prednisone? The reason I ask, is I just started a high dose taper down 2 week regimen in order to attempt to stop an mcad attack or suppress the symptoms..... we were going for stopping the attack altogether. My dosage was/is 30mg twice a day first 2 days then 20 mg twice a day for 2 days then 10 mg twice daily for 2 days and so on tapering down. I'm on the 4th day and I am seeing good results, albeit still very exhausted and tired, but i finally feel like my body can rest and IS resting FINALLY again. But i had the rea
  4. You know, i have had this on and off for a while, but i never really 'took notice' to it.... i think because the ringing sometimes seems not to be a true ringing in the ear, but something of that sort.... and it actually happens daily, but a few times a day. I never put it together with our diseases until recently.
  5. hey you all, thank you so much for writing back. I've had some family drama today so i haven't been able to get back on here. I called my old friend who was my boss, (pharmacist) and talked to her about it and then finally and after hours nurse of his called back. Both said the same thing: to look for swellling, hard time breathing, feeling not right, etc..... I feel much better from yesterday, with a bit more pep today, and the red face isnt causing any discomfort, but i feel it there. It seems to have swollen just a tad since this morning. I'm having some fast good results on it i must
  6. Ok.... I've not introduced any new meds except prednisone yesterday. Started out on 30mg twice a day.... already took my morning dose today...... but when i woke up, my face literally looks like i have laid in a tanning bed without sunscreen for an hour!!! it looks just like a bad sunburn and almost feels like one too. It feels hot without even touching it and when i touch it, it is a bit hot/warm to the touch. I noticed after taking the prednisone yesterday that i started feeling hot on the inside.... instead of wearing sweat pants like i do all day, i was burning up so bad i had to wear
  7. Oh wow!!! Im so excited! I will definitely be watching out for your update about it I am intrigued! And always wiling to try new approaches, alternative meds, etc.... I do hope it stands firm even still in the long run thank you for being here
  8. Thank you issie your post did help me. And you are so right..... one thing that is certain, is that all of us here do respond pretty much differently to meds. I started to prednisone today..... so im keeping my fingers crossed I too, can't take benadryl without feeling exactly the way you describe, by my reaction is so intense that i just wanna admit myself and peel out of my skin.... atarax does the same thing. Im hoping that the low dose of doxepin and the prednisone work...... im always afriad to try new stuff, but im always willing to try anything really, as that's the only way to kn
  9. issie~ i was wandering how you would have rated the steriods..... I am in an intense (pretty sure mcad) flare since coming home from the concert a week and few days ago and my doc prescribed prednisone to see if would cut the attack and possible cut my headaches and tmj pain too. Im scared to death to take it as i have never taken it before, but im feeling horrid and it's getting unbearable. We are also trying a low dose of doxepin, as i had some left and experimented with it (told my doc i did)..... basically i would take about 10 mg in the morning and did it for 2 days... it was the only 2
  10. Most of us are in the same boat. Most of my friends at first thought i was making all this up or that my breast implants is causing my illness, even though i got sick 5 years before the implants and it was all well documented. So, i didn't have any friend support.... and i really still don't. I have maybe 1 close friend who i can talk to, but she is very social as well. So, everyone i know is in the social scene and i unfortunately am just too sick to be social. The bright side to my ordeal is that i tend to be a loner and i really like it that way... i hate talking on the phone and i hat
  11. the only time i could ever tolerate a ssri or an snri was years ago when lexapro first came out. It worked for about 9 mths for me, gained 35 lbs, but i LOVED who i was on that stuff..... it worked great for 9 mths, then after that, it just didn't work anymore. Tried everything in the sun since and all ssri and snri drugs have a very dangerous effect on me, and makes me more sick i might add. I finally had to come to terms that klonopin was best for me and had the least amount of side effects by far...... i just seem to have very very bad reactions to those specific type meds.... my mother
  12. All of my symptoms started about 11 years ago..... i've been getting worse, each month, each year..... but i still remain optimistic. I've went from full function to a very high percentage of bed ridden time since oct 2009 to present..... trying everything but to no overall avail really. Just doing my best to make symptoms bearable as possible.
  13. well water only for just one whole year....... after moving out of that country house..... about 2 years later i came down with the mono = first ever attack= start of my dys, etc.....
  14. im so glad you are getting responses!!! i've asked around the same questions over a year ago but to no avail.... but mine was about a constant stopped up nose!!! im always blowing, wiping my nose..... it is runny alot.... but at the same time, one side stays constantly stopped up... sometimes both. I use to use a nasal spray for a long time and finally stopped it over a year ago (thank god). It's kinda funny.... my parents could totally tell you about how i walked around the house for years with a piece of toilet paper stuck up in each nostril...... id just walk around that way cuz the nos
  15. of all these years and from the very beginning, extreme weakness is what i would call mine. Because in my mind, fatigue to me is from 'doing' something..... my weakness just 'exists' and is very severe and debilitating. I have tried excersise regimens, to no avail. It's always been among my top 3, and prob would most likely say it's actually my top one in dealing with. My 'extreme exhaustion or weakness' goes like this: i feel physically weak.... to the point i can't hardly hold my heads, arms up to drive, or stand but a few mins, etc. Too weak to talk, to weak to think, to weak to anyt
  16. I live in a small town kingsport, tn. But we have a mega Eastman Kodak chemical company that has been here for many many many years, poisoning the air and the local river/lake that we have for ages now. It's always been hush hush about their pollution in the air, water and ground around here.
  17. im actually gonna say im hitting the 10-11 year mark.... each year has worsened significantly for me up to the point of almost completely bedridden these past couple of years.... we are trying so hard to get a grip of this, but all efforts seem nose dive..... yea, im at the point i just can't cope anymore..... not even therapy is helping..... and after so many years of this, im so tired... so so so tired of trying, so tired of going to bed hoping i wake up 'normal' and it never happens...... im pretty fed up with it all
  18. So, i keep reading each one...... i read ncs, and it sounds like me. I read dys and it sounds like me. I read mcad and it sounds like me. I read cfs and it sounds like me. BUT THEY ALL HAVE MOSTLY THE SAME SYMPTOMS!!!! Agh!!! Is there any read difference between these??? in mechanisms? in symptoms that could be told apart from the other??? thanks tennille
  19. For my mcad attacks.... honestly, it takes no trigger, or any trigger. My symptoms are pretty much the same...... im actually in an attack but im so confused as to if it's mcad acting up, or dys acting up or what??? Ugh!!!! it's all so confusing and so many symptoms overlapping. I have been 100% bedridden since i came back sunday from that concert i went to..... i got sick the last 2 songs but made it through..... have been very sick since and i just can't figure it out. Although, for some reason, the month of feb has always been my worse month for symptoms for some reason..... i can thin
  20. I filed with a lawyer who specializes in disability cases only. Took me about 1 year 3-5 mths. I was denied the first 2 times, then had a hearing. My main primary doc did not write any type of letter. My lawyer took my many years of er visits, hospital stays, tests, etc and used all of that as my 'proof'. I didn't have to do anything at all really but fill out a few forms the entire time. I would recommend an attorney that deals only with disability.
  21. What about mcad and gluten intolerance (if its carbs that contain bread, wheat, etc?). If i eat carbs (not veggie carbs) but bread, wheat, anything with gluten.... then exactly what you describe is pretty much what happens to me. The gluten can trigger the mcad into a flare, causing alot of what you describe. Just a thought?
  22. hugs!!!!! what kind of carbs julie? tryin to get my thinking cap on this morn
  23. i gained weight on metoprolol plus it was making me so very much more tired...... i could only tolerate it for 4-5 mths.... i think i gained around 25 lbs on it...... but at the time, i was considered anorexic due to the eating/digestive/nauea, so well, it helped me gain back some weight. I stopped taking it due to the severe fatigue it caused. It did help the tachy, but it done more bad for me than good.
  24. well, i don't have a pots diagnosis, but id say i would be hyper pots if i found the right testing.... my 2 tilt table tests: one was inconclusive, the other was done wrong. I had to chase down that mast cell diagnosis and it came after long talks, etc with my rare case doc. I responded to meds for it right off. Right now, im at the point of, i don't know which is causing the most problems/issues of being bedridden and all these symptoms..... i don't know if its the mcad that's the number 1.... or if it's the DYS that's number 1.... the CFS, is right along right there with those 2..... coul
  25. honey i feel guilty no matter what i do!!!! i've been workin in guilt for 20 years.... lol. But im def a type A personality!!!!
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