It’s not very often that Lizze cries. However, her pain has been so bad lately that it’s become a more frequent occurance.
It breaks my heart to see her in such misery, especially knowing there is nothing I can really do.
She’s at the point where her bottom lip is going numb and she’s smelling things that no one else can smell. I think that has to be some type of phenomenon related to the migraine. Having said that, it’s very disturbing for her to experience these things.
The next step for us to take is the Cleveland Clinic. That journey begins next month, with the first of several appointments.
My hope is that she finds some desperately needed relief of which she so rightfully deserves. For now, her neurologist refilled her pain meds and that will have to suffice until we arrive in Cleveland next month.
I don’t know how she does it. I don’t know how she goes on in this much pain all the time.
She is truly the strongest and bravest human beings I have ever met. 🙂
This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.
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I would strongly advise you ask the Cleveland Clinic, when you go, about the IMATCH program I told you about. It was such a lifesaver for me. I was utterly incapacitated by pain and they pretty much cured me. IMATCH doesn't outright cure many people, nor does it promise to, but it has a high success rate when it comes to making life bearable again (teaching coping skills and stuff), and 40% of the people that go through the program experience significant pain reduction as well.
@MeaghanGood we will be checking that out. Thank you 🙂
@lostandtired @MeaghanGood I have my own blog and here are some blog posts about when I was in the program early this year, in chronological order:
http://charleyross.wordpress.com/2012/01/31/throu… http://charleyross.wordpress.com/2012/02/03/finis… http://charleyross.wordpress.com/2012/02/11/i-mat… http://charleyross.wordpress.com/2012/02/19/done-…
In the weeks following my finishing the program, my headaches sort of gradually faded into the background. I still get them once in awhile, but not every day like before, or even every week, and now I have some meds that actually work. I felt like a whole new person.
@MeaghanGood I'm gonna pass these along to her. Thank you so much 🙂
http://www.peoplespharmacy.com/2012/07/12/hot-pep… http://www.peoplespharmacy.com/2012/05/21/b-vitam… http://www.peoplespharmacy.com/2012/04/23/vitamin… http://www.peoplespharmacy.com/2012/08/05/how-doe…
I may be inclined to try the botox previously offered. If it works, great, and if it does not, then keep looking. Probably noone has a magic answer, but you would at least know if it would help…What kind of answer are you looking for? Such pain must be unbearable for Lizzie, and I would at this point, grab any hopeful remedy while I kept looking for long term solutions. You still are waiting til next month? She is a patient girl, alright! I'd cry, too, with such unremitting pain!
I am so sorry to hear that she is having such sever migraine symptoms. I also have the whole smell thing & sound becomes unbearable hours before the first twinge in my head. My eyes won't focus, I walk around the house with sunglasses on & my eyes still hurt. I get sick to my stomach, experience vertigo & my whole body can actually go numb with extreme weakness. I know how bad she is feeling and I am so sorry. I hope you are able to get some answers next month & help this stop. {{{hugs}}} to the both of you, it's not an easy road.
Have they looked at celiac disease, or this? http://mobile.journals.lww.com/neurologynow/_layo…
I hope they find answers soon.
Once a month I smell things that no one else can smell. Very vinegary. Is it like that?