I first want to thank so many of you for writing me such kind messages.
It, unfortunately, comes with tremendous sadness that I write this update. It is actually very hard for me to write this, but I really wanted to share with those of you who showed such concern.
Will try to write a summary on a very difficult week at DUKE. Last Tuesday, I met with Dr. Gray (who is a very kind doctor), and she did the spinal tap and checked my pressure which was 10. She said this is at the low end up normal. She proceeded to add CSF,and then had me walk around and see how I was feeling. It seemed that for the first time in years, the floor felt flatter. the Rocking seemed to be significantly improved. Looking back, I am questioning that better feeling, as I am in a horrific place now. I am not one to have a placebo effect. I’ve been through a million treatments through the years, and never felt better. I did only walk around for a few minutes, and maybe I so desperately wanted to feel better that I felt it. I’m really not sure. She then did a CT myelogram and found probable source of leaks (5 diverticula). I apologize for not explaining all that well - this is all new terminology to me. She ended up patching these 5 spots, as well as the original spinal site. The procedure was definitely painful, but I lied on the table so hopeful that I could care less about the pain. I then sat up and felt incredibly lightheaded. Apparently, the dye they use in the myelogram can increase pressure as well as now my leaks were supposedly patched up, so some get rebound high pressure.
Next day, felt teeny bit better (not as well as after added fluid), but very off, and a headache started to kick in. She gave me diamox to take as a prevention in case I had rebound high pressure. I took 1/4 what she recommended as I know how sensitive I am. By thursday, the headache progressed to the worst imaginable pain Excruciating isn’t even the word. I assumed I had high pressure, continued with the diamox, and landed in the hospital on Friday with negative pressure!! I was so sensitive to the diamox that this is what happened. so, then she added fluid, head pain got somewhat better but not perfect. Next day flew home with excruciating pain (although not as bad as friday). Perhaps, from adding fluid I am now high pressure, but I am not taking diamox again and hoping body will regulate.
since home, my “MAV” symptoms are at their worst. Part of me wishes so much that I never put my body through this, and part of me is remembering that I had that moment of feeling a little better, and am questioning that now. In addition, when have blood patches was told not to lift anything heavier than galloon milk for 6 weeks, which means not even being able to hold my baby which is heartbreaking. I do have help because of how ill I am, but holding him is truly one of the only things that gets me through.
I have no idea where to go from here. I was initially going to try topamax, but now since I supposedly have this pressure issue, would that only make me worse. I actually started topa a week before I decided to go to DUKE (stopped because they didn’t want results confounded), and sicker from it. Is that because It was lowering my already low pressure, or just normal initial side effects. I feel so lost, and so very depresssed. These symptoms are beyond torturous and after nearly 5 years I truly don’t know how much more I could take. I would never ever take my life (no worries), but the thought of living tortured just seems so unlivable. I just cannot believe any of this. I was 100% healthy before this awful illness struck. A full, happy life ahead of me (so I thought).
I wish I had better news, and I thank everyone for your concern. I hope so much that we all beat this illness and soon! I am now thinking that I am just a person with pressure on lower side with diverticula (still learning what that is), and this is completely unrelated to MAV symptoms, and have to revisit MAV meds. I just don’t have it in me right now, though, to try new treatments. I will have to, though. I will give this another week and see where I’m at.