hilbiligrl

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 are paralyzed, im able to think and answer questions in my head but if i can't speak or write it, what do you do?

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 still have a way to go left to see how it all works out.

thanks katie for the info

kluesyk,

Wow, doctors never cease to amaze me! I can't believe that they are giving you a hard time about the steroids at all given that you have Addison's. I hope they cut it out and let you have some peace and comfort. I hope you do well too.

Katie

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 really wicked and harsh side effects at first and still having some. I know the results will be short term, but if it lessens the attack and/or stops it, it will be well worth it compared to how i have been feeling. I know i will never chose to take it daily long term, my aunt has been on it for years, many years for lupus and i have seen first hand what it can do, so it scares me. But anyways, I was just wandering if you were being prescribed it for the same reason or different?

thanks!

glad it's helping you too!

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.

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 say, but it doesnt seem to affect my exhaustion, nothing does, except tramadol, of which he prescribed me for the tmj pain and it locking up again and again. I cant get in to see his DO doc for her to repeat her procedures on my jaw, face, neck, shoulders.... that stuff is amazing, i had no pain for 2 weeks and it had gotten severe, and the pain free was no pills whatsoever. However it started back, so until i can see her, im taking tramadol for the pain because the tmj is seriously causing me the cry and stay up all night and day in pain. But i notice, when i take it, i get energy somehow!

But anyways, im a little scared now because, for the past few days i've had no appetite, therefore there is little on my stomach and i just took the second 30mg dose of the prednisone before logging on here. Since im in not discomfort in the face and oh yea, i have checked my temp, but it is staying in the 97.5 range, not 98.5 range. But I have had to cut the air on and turn it lower and i've never had to do that, I stay so warm taking this stuff, which they also said was normal.

Oh and i think someone mentioned seeing an integrative doctor..... my doc is an integrative doctor and we try other methods first before we try any conventional methods. Usually for some reason in the months of feb-april i have some of my worst and most vicious attacks... i was spiralling into one hard and fast and i was not handling it well. So he decided to try this approach and see if we can get it to cut the attack.

Also, macks mom..... im starting back on doxepin but only about 10 mg... .he said he would give me control on how to take it, because i feel as if i don't want to take it everyday because after week 5 it can cause a psychotic episode... so we figured maybe every other day, or 3 days a week.... something like that.

Please, if you need to say anything or have any more advice, please share it!! I'll be watching myself carefully and asking the hubbs to, and im forcing myself to eat something.

thanks again everyone!

tennille

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 short shorts inside and turn the heat down several degrees...... i still feel a bit hot.

BUT im already feeling a tad better other than this face looking like it's a bad bad sunburn.

I called the pharmacist and told her why i was taking it and they said to call the doctor because she was not sure. I called the doctor and they are closed and i cannot get an on call doc.... so now, i have no one to ask

anybody have this reaction? do you know if it's dangerous?

thanks

I know, some are waiting to see what I've started using that's new. I really want to give it at least another week. Sometimes, I've had things work well and then after a few weeks stop working or have too many side effects. I will post it when I've given it a little longer to see what the effects are going to be- more long term. But, then keep in mind. I may be a different subset-type of POTS and what will work for me - may not work for another. So, I'll also post what all I know about the type of subset I am and then what I'm using and why. Just be patient. I have to really - check it out first. But, so far - I'm really excited.

Issie

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

Everyone is so different and I really can't tell you what you should do. The thing is, what may or may not work for me - might be perfect for you. It is scarry trying new things. It was for me when I tried the steroids. For me, the benefits didn't last long enough. When I have a really bad flare with MCAD I will use Claritin, Tagament and Benadryl. But, the Benadryl gives me really bad tremors and tacky. I will also take a puff off of Albuterol - for breathing issues. I also do natural type antihistimine things like Vit C and Quercetin. But, as you know - different subset types of POTS react differently to meds. and supplements.

But, there have been some that the steroids have worked wonders for. I know I haven't helped you to decided anything. Just know, I understand your fears and have them every time i try something new. Not knowing what the reaction will be. Sometimes, it's good and sometimes really bad.

Let us know how you do.

Issie

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 know what is going to work and what doesn't.

Listen, issie, I have follwed many of your posts and I am totally into the chinese, natural, herbal, homeopathic meds. I read where you were having some good response from something knew you have tried, but i know you didnt want to share it until you were on it longer..... just wandering, would you be willing to inbox me what that med/supplement is? Also, id love to hear anything that you are taking, have took that works for you, that are alternative methods/meds. I started taking ashwaghanda about 8 weeks ago and im getting some pretty good results from it..... very noticable results.

Ok, i better jump off of here, my brain is not in a good mode today and im misspelling everything right and left .... lol....

thanks issie so much!!! I hope to talk to you more in private on some of the stuff you know alot about with the alternative methods you use.

tennille

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 functionable days in the past week and few days.... but i can't take it long term....

but anyways, i am very scared to try new stuff, but open and willing to do so if im gonna make progress..... i start in the morning with my first dose.... i never start a new med at night.

thanks.....

tennille

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 hate going out in crowds plus it exhausts me beyond words could describe. I don't even like visitors, and honestly can count of only about 5 times in the past 12 years have i had someone over. I love my peace and quietness way too much i guess.

Every now and again i get the urge to really wanna get out, but im just always too sick. But i do feel like i miss out on so much though. Im 34 and have never been to a bar, club, dancin or girls night out...... ever. I'd like to experience it just once though. I just went to my first concert a week and a few days ago and i have been bedridden since.... it took that much out of me..... and well , now im in a major huge flare up. So, i know that it just takes a whole heck of alot out of me when i go out..... so it's rare that i do.

so sorry you are lonely dear. You really do find out who your real friends are in situations like this, something, if which im thankful for.... to weed out the ones we don't need to waste our time with. Hopefully you will feel up to getting out soon I do hate being boxed up in a house everyday...... and i do miss the outside world myself.

Hugs to you!!!

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 is the same.... she can only handle prozac for anxiety, but she has celiac and chrons.... not dys though.

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.

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.....

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 nose would run so much!!!! still do it to this day haha

but it is aggravating nonetheless!

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 anything. But at this same time i feel so deathly weak which is often, almost all the time, but some times more severe than others.... like in and out of ranges of severity. But at the same time, the insides of me, maybe my cells, nerve endings, not sure, but i feel like everything inside is wanting to jump out of my skin... it feels so horribly 'wired or electrified times a million', as if i can feel it in every cell........ so i cannot rest. All i can do is lay there, yet i have that wired severely unconfortable feeling...... I never feel like i rest or that my body is at rest. I wake up feeling worse than when falling asleep, like i have fought a battle in my sleep. I am mostly bedridden, even though im working hard with yin yoga, meditation, gluten free, etc.... I did finally for once find feeling of rest last feb/march till now when i started on the klonopin and the mcad regimen... but still feel exhausted all the time, if that makes sense. Im currently in a nose dive pots hole that has totally threw me for a loop and the weakness/wired feeling is horrific and unbearable these past days/today. Plus my tmj started hurting massively today, and many more teeth and gum bones hurt bad in my face. Ugh, i've cried all day....

sorry... im rambling.... yep, i don't think i've actually got to experience the feeling of energy in over 12 years easy..... it's hard for me to grip pens, etc.... write, etc.... most days. On my severest of days, i cannot even grip a pen...... and much more.

How do i cope? Man, i have no clue...... through humor mostly. But today, no coping mechanisms are working for me. I guess im gritting my teeth and bearing it.......

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.

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

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

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 think back 15 years and each year in feb, it is always something in the health and/or stress going totally haywire.......

lets hope we get past this flare up soon

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.

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?

hugs!!!!! what kind of carbs julie? tryin to get my thinking cap on this morn

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.

Am I the only one on here without a POTS diagnosis (got autonomic neuropathy), who is chasing down a possible mast cell diagnosis??

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..... could they all be one in the end? i just have no idea.....

but there are others on here trying to piece the mcad...... it was here that i figured that one out on my own and presented articles, stuff on here, symptoms, etc to my doc and thankfully he was right on the bandwagon and it made perfect sense to him. I responded immediately to doxepin but had to stop taking it after 5 weeks.... now i stay on the zantac/zyrtec combo, but im beginning to think it's not 'powerful' enough to suppress all these symptoms..... and there are sooooo many symptoms that just keep me debilitated.... ugh

keep at it but don't overload yourself in thought and research..... if i overload the brain in trying to 'figure all this out', it's a downward spiral for weeks, so i give myself breaks in researching and reading and looking things up...... plus my poor brain is just kaput anymore

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!!!!