Carrie-Leigh and Christine,
I woke up to your extremely kind posts to me. I wish I was feeling better and could better put into words how much your posts have meant to me. In fact, my parents spend the weekends with us (our nanny isn’t here on the weekends and they help my husband with the boys - they live 2+ hrs away), and I read your posts to them and my husband. we were all so very touched by your immense kindness and understanding.
Carrie-Leigh - I keep on rereading the part where you said that I am an inspiration. I always feel like I’m the antithesis of inspiration, as I did not get well after so many years. So, to read that, was truly heartwarming. I appreciate your thoughts on the neurontin, and will speak more to that below. I am thrilled to have heard of your progress
christine - What you wrote about me being strong to take care of the boys even with help, truly resonated with me. Lately, I don’t even feel like a mom, as I’m not very present so, thank you for those words. I h ope so much that you get well soon!
Update: After more diagnostic testing yesterday (went to a local doctor - who was actually trained by Dr. Gray) who did a spinal tap, checked my pressure, and added fluid, it has become more apparent that CSF issues aren’t the cause to my issues. I won’t go into much more detail then to say that it confirmed that it’s time to move on and try migraine meds again. I would be feeling less hopeless, if it wasn’t for so many failed medication trials,and how many years I have been this ill. But, I am certainly more scared of living like this than trying another medication. Carrie - Leigh - I can definitely relate to everything you wrote about the activity in your brain. I usually call this spinning in my head. I like the fact that Neurontin is a quick trial. I am so very sick and I know there is no magic pill, but I would like to see as quickly as possible if a med is going to work or not. I also am in dire need of relief. not only physically, but my hopelessness and depression are increasing with every passing day. Every day I say I cannot take anymore torture, but I don’t have another choice,. I do know that the main side effect of neurontin is dizziness, which concerns me, but my husband assures me that is temporary. I will have to discuss all with my neurologist.
Today has been such a heartbreaking day. my nanny or family usually bring my baby to me for daytime feedings, but today, I could only feed him for 2 minutes. That spinning feeling in my head was much too intense. When feeding him, I am always suffering but wasn’t even possible to feed him today. On a brighter note, since the CSF treatment didn’t work, etc., I can now hold my baby again. I don’t have to worry about breaking the patches, so I lifted my son for the first time. It wasn’t easy, but it brought tears (good tears) to my eyes.
i hope one day I could write something more positive, but in the meantime, your support means the world to me.