As many of you know, I've had a persistent headache for seven and a half years and I've tried just about
every treatment available (Jefferson Headache says that I've tied every
treatment). Each of the last five summers (including next week) I've been hospitalized at Jefferson to try interventional IV treatment. The last two times it's been ketamine, which has helped a lot in different ways--which is more than I can say about
any of the other treatments; the ketamine might not have decreased my pain level but it really eases my suffering
. I've actually been using the ketamine nasal spray for a while now at home and it's been helping a lot.
My psychological health has improved a LOT recently, and I really want to share that with you all. I've posted a lot here and have gotten a lot of wonderful support, so I wanted to thank everyone for that :)
Recently I've felt bad that I haven't been able to keep up with the discussions more, and haven't been able to answer some peoples' emails. Because of the debilitating nature of the headaches, and particularly their unpredictability, I just can't commit to sitting down for a few hours each week and writing the long personal responses that I've loved to write for a lot of you in the past.
I really want to participate in this community though so I'm going to be available on Twitter. That way the discussions I can have with you all can be spaced out and there can be a quicker back and forth to ask and answer questions. As you'll see in my signature, you can follow me (if you want to hear my sporadic thoughts that I'm posting as I'm beginning to recover from being disabled by pain for so many years) at twitter.com/InBensHead
or tweet me using @InBensHead, and we can share our experiences. I tend to use the hashtag #benshead to mark posts that are related to my headaches. You can still look at my tweets (posts) even if you don't have a Twitter account (see my message below for information on how to use a shared account to send messages, if you'd like to).I'm going to particularly try to Tweet during my five or six day hospital admission eight days from now (6/28). I'd really love to share my thoughts and have some fellow sufferers to talk to during all the down time when I'm there. So please tweet me if you want to chat or just say hello! :) (or just follow the link in my sig to read)
I hope you're all doing as well as can be,
DX: NDPH, Recovered(?) CRPS
RX: Lamictal, Namenda, Nardil, Piroxicam, Oxycontin, Clonazepam, Hydroxyzine, Ambien CR, Magnesium (800 mg/d), Riboflavin (400 mg/d), Fish Oil (2000 mg/d), CoQ10
PRN: Ketamine nasal spray
, Oxycodone, Toradol IM, Celebrex, Lodine, Zofran, Phenergan,
rarely: Migranal, DHE IM, Reglan, Provigil, Maxalt, ZomigIf you'd like to talk about headaches or just life, tweet or follow me @ twitter.com/InBensHead.
Post Edited (korbnep) : 6/22/2010 11:28:22 AM (GMT-6)