Its Not Working Anymore

[Notgivinup]

I JUST DON'T UNDERSTAND. I've been doing the MCAD antihistamine protocol. It worked for about 2 weeks. I hate this disease/syndrome!!! I 've done everything exactly the same. All my POTS symptoms are back.

I want to scream/cry/jump out the window. Why why why?

Maybe I don't have MCAD. Perhaps I never did. Probably just a fluke that the stuff worked.

I'm beginning to see a pattern with me. Everything new I try works for a couple weeks. Then quits. I'm calling Bev tomorrow. I'm asking for clonadine. Haven't tried that yet.

On top of the flu like symptoms, My whole body feels stiff and aches. Esp. The coat hanger area. I've even added a reg aspirin a day. Now I'm back to needing muscle relaxers.

This disease doesn't kill you. It just kills your spirit, and makes you wish to die.

Sorry about the rant. I am sick, and I am discouraged once again. my 4.5 year old is on the bed with me. I just want to sleep...........forever.

[toddm1960]

Hey Not, never give give up, tomorrow could be start of a long remission. We all go through the ups and downs, blow of steam, yell and scream on here. Then try to relax and look for the next thing to try. It will get better.........

[firewatcher]

Actually, giving up is EXACTLY what you need to do! Let go of any expectations and just live each day the best you can.

The present is a gift that no one is promised.

There will be good days and bad days and really, really awful days, but it is a day that you have HERE, NOW with your family!

Do the best you can, as much as you are able, and forgive yourself for not living up to your own expectations!

Whatever you do WILL be enough!

Learn to do acrobatics at the end of your rope.

Laugh at the little things, as often as possible.

Learn to cope as best you can.

Live for the moment.

((((((((((((((gentle, supportive hug))))))))))))))))))))

[potsgirl]

I want to echo what Firewatcher wrote, because it's the same message I want to give you. I certainly hit days where I feel so sick that all I want to do is die, too. I think probably many of us here do the same. But, at least we have that day, and hopefully the next day, and we can usually count on the next day being not so horrible as the day we're currently enduring. There's hope, and so many days that's what has pulled me through.

Be good and kind to yourself, get through the horrible days as best you can, and know that there will probably be a tomorrow for you, and it might contain great gifts and joy.

Jana

[Notgivinup]

I know you all understand. It's just that I had so much hope that this was IT, the underlying cause of my POTS. I feel crushed.

I can't give up, my personality is one that just won't let me, I'll quit reading for a day or two at the most, then I'm right back at it. Researching stuff that I barely understand. I just can't stop myself.

I very much appreciate this forum. Thank you all for being here, and for all your words of encouragement.

[erik]

Certainly hang in there. We're here for you on the forum, always. Also be sure to do your best to seek support from family, religious and/or professional sources as dealing with any chronic illness is inherently challenging... especially the sort that seems to tease and torture us with variability like this. Losing a good spell is so frustrating, feels worse than not having had it to begin with, but one thing that it reminds me of is that my body still has the underlying capability of running reasonably well. This is a "mixed blessing" since it's so emotionally tough, but in the big picture it is still a good sign that you had a good streak.

There is literally nothing in the body that stays the same over time. Homeostasis even in the healthiest person just means things are varying within decent margins of functionality. The body adapts to things, especially meds. I think you should still pursue things such as MCAD diagnostically if you can if it matches symptoms pretty well. A specialist might have some tricks beyond basic anti-histamines... for example, certain tricyclics will hit stuff like seratonin and sometimes balance autonomic response while also being H1 and/or H2 blockers... or various other things. There might be other possibilities out there, or perhaps things similar to MCAD. Or the anti-histamines could have been having a regulatory side effect that provides a hint to another underlying problem... pushing on one spot always induces counteracting responses or side impacts... I'm sure there are still other things to try.

[tinkerbella]

notgivingup,

If I was magical, I'd take all your pain away but I'm not. Let it all out here and know we are all here for you always!

This quote comes to mind as I think of that little one beside you and although these days are hard, one day you'll look

back and cherish these days with your little one, as I was sick with the 3 of mine. My mom told me that those were the best days of my

life. She was right...

"Be not simply good; be good for something."

Henry David Thoreau~

I hope you feel better soon~

xxx's

bellamia~

[Mrs. Burschman]

Notgivingup,

I understand your frustration! And I'm glad to hear you're not going to give up on finding the answers. Never, never, never give up!

Amy

[Notgivinup]

Certainly hang in there. We're here for you on the forum, always. Also be sure to do your best to seek support from family, religious and/or professional sources as dealing with any chronic illness is inherently challenging... especially the sort that seems to tease and torture us with variability like this. Losing a good spell is so frustrating, feels worse than not having had it to begin with, but one thing that it reminds me of is that my body still has the underlying capability of running reasonably well. This is a "mixed blessing" since it's so emotionally tough, but in the big picture it is still a good sign that you had a good streak.

There is literally nothing in the body that stays the same over time. Homeostasis even in the healthiest person just means things are varying within decent margins of functionality. The body adapts to things, especially meds. I think you should still pursue things such as MCAD diagnostically if you can if it matches symptoms pretty well. A specialist might have some tricks beyond basic anti-histamines... for example, certain tricyclics will hit stuff like seratonin and sometimes balance autonomic response while also being H1 and/or H2 blockers... or various other things. There might be other possibilities out there, or perhaps things similar to MCAD. Or the anti-histamines could have been having a regulatory side effect that provides a hint to another underlying problem... pushing on one spot always induces counteracting responses or side impacts... I'm sure there are still other things to try.

Erik, I appreciate everyone's kind words of encouragement so much, but today your words seemed to resonate with me the most.

especially the sort that seems to tease and torture us with variability like this

Having a good spell/remission, is a double edged sword. I foolishly allowed myself to have thoughts of the future. A non-sick future, where I could do things with my child, and not just tolerate and barely get thru, but actually enjoy them.

I really like your thoughts on why the anti-histamines may have been working for me. And you're right, this illness does toughen you up. **long sigh**

[Notgivinup]

notgivingup,

If I was magical, I'd take all your pain away but I'm not. Let it all out here and know we are all here for you always!

This quote comes to mind as I think of that little one beside you and although these days are hard, one day you'll look

back and cherish these days with your little one, as I was sick with the 3 of mine. My mom told me that those were the best days of my

life. She was right...

"Be not simply good; be good for something."

Henry David Thoreau~

I hope you feel better soon~

xxx's

bellamia~

Thank You Bella, your quote is beautiful.

I also wish you were magical. Then you could heal yourself too.

[erik]

I wish I knew of a trick to dealing with it, but I can sympathize for what that is worth. I'm sure many others here can as well. I classify myself as moderate & intermittent with most of my symptoms... so I deal with that style of disability... like an overall disability more than a specific persistent one. It places limits and dampens spirit in it's own "special" way... but does so nonetheless.

I like the scene from Shawshank Redemption where Andy talks about a place inside that can't be touched... where they can't get to you. The other guys looked at him like he was crazy... and he probably was. But he did keep his hope, crawled through his personal (literal) crap tunnel, and made it to sunny Mexico! We can crawl through our proverbial crap tunnels too... with some help and a strong spirit and a persistent goal.

[Janey]

I wish I knew of a trick to dealing with it, but I can sympathize for what that is worth. I'm sure many others here can as well. I classify myself as moderate & intermittent with most of my symptoms... so I deal with that style of disability... like an overall disability more than a specific persistent one. It places limits and dampens spirit in it's own "special" way... but does so nonetheless.

I like the scene from Shawshank Redemption where Andy talks about a place inside that can't be touched... where they can't get to you. The other guys looked at him like he was crazy... and he probably was. But he did keep his hope, crawled through his personal (literal) crap tunnel, and made it to sunny Mexico! We can crawl through our proverbial crap tunnels too... with some help and a strong spirit and a persistent goal.

I love your posts, Erik, you're so supportive and clever! I think we all know what a literal crap tunnel is like too...!

[Notgivinup]

Janey, I agree I LOVE Erik's "way".

[erik]

I will be patenting C.C.T.T.C. soon... my "Customized Crap Tunnel Therapy & Counseling" that is. Don't be surprised to see me on Oprah peddling my top-selling book on Amazon or my "Sedona Crap Tunnel Retreat & Spa" for $10,000... (it will be located above slide rock for easy washing off afterward). Gotta fund my POTS meds somehow

Seriously though. I did cry while making that post... not being sarcastic here... actual tears... but I also laughed. Seems to work best for me and I share it in that spirit. I am glad to be helpful in any way, even just for a chuckle amid tough circumstance.

[juliegee]

Sorry

Gentle Hugs-

Julie