Hi Norma,
Sorry to hear you are also still struggling after 2 years.

I don't have any suggestions for you, as I am in the same boat, my 2 year anniversary was last month and there's not been very much improvement in 2 years and I very much feel like my life has just been on hold during that time.

I also still require a great deal of sleep too, at least 10-12 hours at night and then 2-3 hours of sleep during the afternoon and I'm constantly fatigued. I never wake up and feel refreshed or rested, just always worn down.

After reading Mark's suggestion to you regarding a sleep study, that might be something I attempt to pursue myself. My husband would never know if I did anything unusual in the night, he sleeps extremely soundly from the minute the light gets shut off at night until the moment the alarm goes off in the morning.

(For instance, yesterday at 3am I got up to use the washroom and somehow forgot about the step up in the bedroom and tripped and went splat less than 2 feet from his side of the bed, I yelled, swore, got up and not once did he move, moan or grunt during any of it! )

Regarding all the appointments etc. I was just discussing that with my rehab psych earlier this week and she suggested I might consider a 1-2 month "rehab holiday" where I just put all my appointments on hold and just live my life and take a break.

Apparently its very common to do and needed when rehabbing for a prolonged period of time. Her only caution was to talk to all the pros involved to make plans for how to ensure any progress that has been made won't been undone, but in my case we know that's not a big issue.

There is one other thing I am going to try and the research is kinda new and to be honest I'm really just hoping its going to work out is tinted lenses for my glasses. I got some information about http://www.opticalm.ca/ from the rehab center and I went to see them and did their assessment (it was NOT cheap) and from that, the "appropriate colour" was determined and now my lenses are on order.

I don't think they will be any magic cure all or anything, but I am hoping they might be helpful with reading and possibly reduce my headache a tiny bit. (I've not had a single day or a single moment in 2 years without this head pain, so I'm desperate enough to try anything!!)

My lenses probably won't be ready for another week or two, as they just got ordered. But my rehab doc has run out of drugs and things to try and now we're waiting on the neurology appointment for next steps. Apparently the neurologist he's sending me to is supposed to be very good at treating untreatable headaches, so we'll see.

At this point, my rehab team is no longer focused on returning me to my "normal" state, but trying to help me find a way forward from here with the limitations of head pain, fatigue and mobility issues (I'm still walking with a cane) and its a real challenge.

Anyhow, I'm sending you lots of good thoughts and know you're not alone in your frustration and being discouraged.

Starr