I am at a little more than 2 years with my pcs. At this stage I am trying to pace my activities so as to minimize my symptoms. I am trying to add new things but am finding I have to get rid of other things.

I still can not read from more than 30 minutes and watch no more than 2 hours of t.v. without increase to my symptoms. I can not lift anything more than 15 pounds and can't walk for more than 30 - 40 minutes. I am starting to drive a bit more but not very far. I still have not been able to work. I have had a headache and head pressure for more than 2 years and have issues with balance.

The other disheartening thing I find is the amount of sleep I require. I sleep anywhere from 10 to 14 hours a day. This does not leave a lot of time to get things done.

I have now done physio, chiro, massage, osteopath (cranial sacreal therapy), vision therapy, prism glasses, vestibular exercises, yoga, water exercises, phychologist, occupational therapist.

I am seeing a ENT Specialist at the end of the month and I am considering getting botox injections this summer for headaches.

I really feel at this stage I would like to take a break, all of the appointments seems to eat into my life. I often take the bus and it consumes 3-4 hours of the day. I think I would like to just move on to life..... It is hard to explain to healthy people how much time and effort rehab takes.

I find having teenagers it is hard to protect your time. They just assume I am at home and at their disposal. I am working hard at maintaining my boundaries but teenagers are rather self centred and after this amount time forget that I am not well.

I am having a severe bout of vertigo today and have slept almost all day. It is time like this I get soooo discouraged.

Thanks for listening!!!!

Norma,

Has anybody considered if you are sleeping properly ? Needing so much sleep is a common symptom of sleep apnea. If you are not breathing properly when you sleep, the sleep does not give one the restorative value it is intended to do. Sleep apnea can cause a lot of PCS symptoms to be prolonged.

A sleep study might be worthwhile.

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

Mark, Thanks I will look into this.

Starr, Your sleep patterns sound alot like mine, I sleep for 3 hours in the afternoon after a full night rest. I am hoping and praying you find some solutions to make your life better.

I know I will start to feel better once I get this vertigo under control. I just hate when you take a couple of steps back. I am now housebound until the vertigo goes away. I was really starting to enjoy the freedom of going out. As I say to my kids suck it up buttercup, there is not anything I can do... and not on the weekend when everything is closed.

I am going to the Osteopath on Monday and he may have something that will improve the vertigo, if not I was thinking about the Chiro.

Thanks for being there, it can be a very isolating process.