[teresa403]

Hi there, never used one of these groups before, but I am at the end of my rope right now. I was hurt in an accident on July 13 last year. No one really knows what happened, I was found on out cold on a cement floor with a heavy bag over my face. No one knows how long I laid there, but my co workers had been looking for me for over an hour before they found me. Was taken to hospital in ambulance and released that day and was told to go to my PCP if I had any problems. Had to take a cab to work to get my car.
I spent the next couple of days rolled up in a ball in a dark room, lights and sound would send me "over the edge" My head would pound so much I could not stand it. I did get an appt with my PCP, but by the time I got there I was in so much pain I could not tell him anything. I just gave him the papers from the hospital and he sent me home with Soma (hurt back, neck and shoulder also) and Xanax. Next time he gave me Fioricet and told my to see a neurologist--boy, are they hard to get into!!--
The first neurologist was only a resident, only saw the Doctor once for about 2 minutes. Saw this resident twice before she told me to see a pain management doctor. I was not happy with that because I was still having vision problems (no peripheral vision and still very light sensitive. and non stop head aches 24/7) So I found another doctor. She is trying several things, which I will be happy to go over, if anyone wants to know. But the thing that seemed to help the most was vestibular therapy.
There in lays my problem...well one of them... They only way I can do the vestibular therapy is to take ALOT of pain pills both prescription and over the counter mixed together and even that does not work all the time. I can not seem to explain to either the pain management doctor that percocet is not enough to keep my pain in check, nor can I explain to the vestibular therapist that I could do the exercises better if I was not fighting off a migraine (though the pain is worse than that)
Any ideas on how to make these people understand that I have been walking around with a pounding headache for almost a year. I went from being a very active person to sitting in a darken room most of the day. From being a speed reader with a 90-95% retention rate to not even being able to read a sentence. I lose track of a conversion while I am having it. I am also having problems with my emotions. I cry at the drop of a hat, which I never did before, which makes my worry that they might just pass me of as being depressed.
If any one out there can give me some guidance I would really appreciate it.
Thank you in advance

[sospan]

Your symptoms and experiences with doctors and Neuro specialists are all common things we have experienced on this board.


For most of use the path to improvement is to rest and improve our diet and take some supplements. You will find plenty of posts on here about all of these.

Is there any particular areas you need guidance in ?

[jac3sr]

Do you have anybody nearby (family or friends) who can help you with day to day tasks? It sounds like the best thing besides eating healthy is probably to rest in a dark room, like you're doing. Try wearing sunglasses and earplugs if you have to leave the house. If you can stand it for a couple of weeks, the rest may help you get back to a realm of at least manageable pain.

Also - I've heard that taking OTC pain drugs for headaches more than two or three times a week can cause "bounce-back" migraines. I know it is going to be horrible, but maybe trying to get off of those for a good 3/4 days and letting your body figure out what is happening may help?

I can't believe you've managed to even somewhat cope with this for a year!! There are a lot of much more experienced people on here who will also chime in! Hang in there! Keep us updated!!

[jac3sr]

Sorry - My thought processing is still slow.

The reason I asked about family or friends nearby is because it sounds like, with the amount of pain you're in, they can help by cooking for you, driving you places. The less you have to try to think through the pain, the better. I don't know if you have noticed what we call "brain fog". I was just thinking that maybe you're experiencing that and haven't really realized it and therefore are trying to focus through it and causing the headaches to be worse??

I would recommend asking any friends/family to watch at least Parts 3-5 of "You look Great". It's a series of youtube video's where this man who has had severe PCS describes it in a way that those who have not experienced it can understand. If they understand, they'll be more willing to help you and in general, they'll be more supportive.

The thought of staying inside in a dark room for days on end was a terrible prospect to me, but here are my suggestions. I was an avid reader before this PCS mess, so I like listening to audiobooks. If you can turn the volume low enough, it helps you not go crazy from boredom and provides a distraction from depression and thinking too much about what we can't do. Also, if you do have friends that can come over (one at a time, preferably, so you don't get overwhelmed) they can maybe talk to you in a low voice about mundane things about their lives or whatever. The only other thing I can think of is to play soft music (classical or at least not HARD rock) in the background.

I've found that sitting/laying in bed with my head resting and my eyes closed I can go into a sort of trance where I don't think, but I'm not sleeping. It's just restful!

Last thing, I promise! I'm sorry to hear about your pain. Know that it is going to be ok and try (I know this is a tall order) not to worry. It causes symptoms to be exacerbated!!

[MaineMamarazzi]

First...so sorry to hear of your struggles. You are not alone...and what your feeling is real.....and its hard when no one gets it. It is a very isolating condition.
Its PCS.....which is a minor Tramatic Brain Injury (mTBI).

This month will be a year for me since my MVA.
I never thought i would still be struggling!!
I HAVE improved though.
At this point...i have the really bad days full of intense symptoms...but...i am now seeing stretches of days where I'm like "wow...i feel kinda normal!"
A few months back....I couldn't see my way out of the all the pain and misery.
When your in the depths of it....it seem like its not even possible...

I was super annoyed by my docs saying give it some time...blah blah
I was also super annoyed by the optimism of the Neuro Chiro I decided to see.

He said he could fix me...yeah right! I have been to chiros before, hated it.
A neuro chiro is completely different...
Anyway..this man proved me wrong! I never thought he could help and while i was seeing him I could finally see the light.
Treatment plan was 2-3 vists a week... for 4-6 weeks.

I plan to go back and start up again..because of how much it helped. Seriously..if anyone can find a Neuro chiro....please try that. They do not push meds...but did suggest things natural..like phenitropic and a couple other things. Overall amazing. ( I had been to everything...PT's, OT's,)


I started out with docs that didn't validate the pain I was in. I totally get that and I felt defeated everytime I walked out the appts. Horrible.

It really does depend on who you go to .

I unfortunately had to change. I am a veteran and go to the VA hospital.....
finally decided to see a civilian neuro (did my research on if they dealt regularly with PCS).
And of course...heard about the neuro chiro from a friend...which was a godsend.

If your able...FIND someone that you know is knowledgeable of what is going on with you.
Some neuro offices wouldnt take me saying that they didnt "deal" with pcs.

Not a place that just knows about it..but a place that stays up to date on all the current findings and treatments.

My doc just went to a huge seminar in New York....JUST about PCS.

They are out there..and you will feel better when you find them...if you have the means to..I know its easier said then done.

One thing that made me cry tears of joy was when I stumbled onto a support group about PCS...you mean there are others like me...same exact symptoms!! People that validate me on a daily basis!? Because once in a while is not enough to keep you going.
I found these forums and they are soooo great...
the regular feed and chat features ect of Facebook are wonderful.
I have made so many personal connections.
We vent, we are silly...we help. (i love that I can HELP now..that i can give back..it gives me a good feeling)

Sounds silly saying that a facebook support group was my saving grace...but it was! Always there for me...and easy to get to and navigate..so didnt take much thought to interact online. All around the world on there...so any time of day someone is there to listen.

YOU WILL feel better....no perhaps not 100%, but it will happen. I am having a bad few days this week...but...i know it will pass...I still get mad about it...and hate how limited I am and what it has taken from me...
Its a grieving process.

I too have tried all the pain meds...migraine meds, it just put me in even more of a fog...unable to participate in my life.

So sorry to drag this on...
and if you made it to the end of this....i hope your head isnt hurting from having to stare at the screen for so long!

Also...here is link to other support group that really made a difference
https://www.facebook.com/groups/113072042059485/