First outing (party)...next day!
 

Ok...so I survived the party --sitting in a chair the whole time.

But wow..couldn't sleep a wink and woke up with a HUGE headache. I even get this chill across my shoulders and back --

going back to bed! Any suggestions here?? This is nuts!

What is going on with my brain?

It's perfectly normal for PCS.

well to continue how bad the day got...I could barely even stand talking to a friend on the phone -- My head feels like its going to explode --- forget tv...I can hardly watch anyway and today was out of the question...5 mins and I shut it off

My kids got home from school and I could barely talk to them...my head is just killing me.

oh...and unsteady -- that got worse too - I feel like i'm on a boat on a tidal wave.

Yep, all sounds normal. : ) I would have to assume you need rest. real rest.

OK...now on day 2 of slamming headache Couldn't move off the bed/couch --

i didn't even talk to anyone ..do anything alllllll day

I can be "down" for several days to a week if I overdo things.

come on...this is getting crazy...I couldn't even be around my kids after eating dinner with them--my head felt all weird and the headache got worse

I would ask for a PT evaluation to see if that can help your headaches and
other issues. This is something that has helped mine.

I get a added help for the headaches, but many are sent to one because
of headaches.

Donna:grouphug:

I did some physical therapy...and chiropractor...neither helped.

All my issues are overstimulation...even tv and computer -- 5 mins at a time.

Drink lots of water
Eat healthy foods
Drink a little caffeine and take a couple pain killers
Sleep plenty

Have you made sure that you do not have any major problems? I know that my neurologist was worried about bleeding, but with an MRI and MRA he said that there was nothing.

It is a very tough road, but we can all make it we just have to find a reason to do so!

Good Luck!
Mary

yes...just had mri/mra done (mri for 2nd time)...no problems. I had bloodwork done last week too -- even checking for lyme -- all fine.

I can't deal with it anymore...i'm losing my mind from being so bored!

Now that you mentioned LYME I even did Lumbar Puncture and they did lots of test on my spinal including LYME and found nothing. My Intracranial presure was 21 so it was normal and if there is any problem I should have got worse or better and for me it stayed the same with no spinal headache. Your Neurologist may suggest that next.

For stimulation based headaches, dizziness etc., the so-called specialists I have seen gets stumped when I mention and put this as anxiety. Have you considered Stem Cell Therapy (in U.S. there are lot of clinical trials going on but tough to get into)? I did gather lot of information and even get in touch with few doctors outside U.S.A. Once I ran out of all options and if only I can take a long flight I am even ready for that.......Hope something good happens before I go on that route.

No...I never heard about this stem cell therapy...tell me more

Stem cell treatments are a type of genetic medicine that introduce new cells into damaged tissue in order to treat a disease or injury. Many medical researchers believe that stem cell treatments have the potential to change the face of human disease and alleviate suffering (from online dictionary). Recently supreme court even cleared funding for embryonic stem cell research and plenty of research/trials going on in U.S and in other parts of the world they are actively treating patients. (Germany, China, India, South America etc.,) In U.S. it may take several years to become a mainstream treatment because FDA has to approve and is a tough process.

It is not like massage therapy etc., and is a serious treatment and mostly people go only if current medicine gave up on them (Spinal cord injury, Brain injury, Muscular dystrophy, heart condition etc.,) some reported minor success and some good success. I contacted one doctor abroad and she has been treating for about 8 years and lot of patients from outside the country. One girl from U.S. went for LYME disease since LYME caused lesions in her brain and she is suffering immensely (similar to post concussion symptoms). After 2 months treatment and therapy she reported great success. Another patient (paraplegic) Spinal cord injury patient reported only minor success.

Stem cell treatment is aiming for a cure and treat the symptoms. There is no guarantee or whatsoever when it comes to brain. There are risks associated because no one knows what happens down the road. People even reported brain tumor after the treatment. But in California they are doing a trial on one patient who has brain tumor and is the first case. It is that complex.

Anyways Stem Cell is a huge field to discuss and I don't want to get into any debate or argument. I mentioned because if everything fails or condition worsens you can consider that as last and ultimate resort and for now keep that in back of your mind. It also costs lot of money since Insurance doesn't cover and lot of planning needed before we decide. As I mentioned I still trying other things and hope I don't have to go on that route. You are about 8 months I think and generally I heard give it one year and after that it seems like we cannot put a time line for recovery and brain heals only as much as it wants to. Very frustrating.

when was your injury?? How far did you recover so far? What symptoms are left?

I am 2 years into the injury and happened in May 2009. For the first 5 weeks I made good progress and everything went to hell just like that.

Many symptoms still remain the same which you can check in the other thread.

symptoms got better : Watching t.v. and be on computer. fatigue went down a bit, smell and taste got back to some level, 24/7 extreme lightheadedness/imbalance went down to moderate level.

symptoms got worse: stimulation dizziness/headaches (able to tolerate some what in the first year and now it got worse), facial and other pains in body, low-level nausea (may be Elavil since I didn't have it until I started), able to drive decent now it is getting tough with nausea and dizziness.

After the first now I live in a very quiet place with no stimulation etc., plenty of rest and thought things will improve but in some regards got worse. May be my brain used to this quietness and any stimulation (even talking to someone) making it worse? Is it a bad idea? I am confused.

I am even doing some controlled exercise for the past few months (university of Buffalo concussion clinic protocol) in the evening and that doesn't bring any symptoms. Infact I do it when I feel very worse (headache, dizziness etc.,) but I feel little better after exercise and may be increased blood flow to brain. I tried to do in the morning and it wiped me out the whole day. I am lost with all this. 2 years of suffering and counting.:(

you know what...I feel the same way -- that the kids are in school all day and i have no stimulation -- i don't even watch tv -- then they get home and bam it all hits me..headache comes on full force by dinnertime.

i never had spinning dizzy -- but feel like i'm on a boat .and that seems a bit better.

i get a lot of tingling on the top of my head...and i'm waking with anxiety attacks...but who wouldn't after 8 months?? I know this is a big part of my condition and I'm trying.

I also have some facial pain...but I'm starting to think that is partly anxiety too.

I'm a glutten for punishment and I push myself too much I think.

I'm going for walks...hoping this helps a bit too.

what does your day consist of??

good luck...feel good -- have a nice weekend.

My dizziness also mostly imbalance, feel like I am going to fall down or faint. I get that too but very mild and easy to manage. ENT doctor even put steroid shots in my ear which did nothing. I think it was totally unnecessary.

I work from home on computer part time whenever I can. Besides that pretty much nothing. When I feel ok I quickly run to the store or go to doctor. Lately I am not doing any therapy since I tried many and giving it a break. Evening I do 15 to 20 minute stationary bike. I tried to walk around the park right next door and dizziness hit me strong.

Weekends the time stands still. Watch some t.v. and not much computer either. I keep getting invited for parties/get togethers and even this weekend there is a house warming party. Had to say No. I get immediate dizziness etc., when around people and had to leave that place in 10 mins. Anyways this is how I feel for 2 years now and impossible to get used to this life style without people around. Feel like I am in a solitary prison in my own body.

Try to have a good weekend. Good luck.

yup...same here...solitary confinement -- problem is I have 3 kids -- one coming home from college this weekend so I'm constantly overstimulated after 3pm.

I am missing a party tonight and pretty upset.

Last weekend I went to a Communion and felt fine while there...even when I got home, but suffered badly for 2 days.

I almost never watch tv....just Modern Family...hysterical..22 mins. Maybe I will tonight since my husband is at the party. I'm miserable.

What about reading?? I tried a while back but haven't recently. Does that bring on headaches for you?

I go on computer 5 mins at a time.

I barely leave the house.

I haven't tried much reading. I brief through newsletters for about 10 mins. I lose interest and couldn't concentrate more than that. Not sure I get headaches if I focus or not.

With 3 kids it will be challenging. In my case the more I isolate from stimulation the more I got worse seems like. Lately allso I get my symptoms aggravated immediately in any social setting, stores, around people etc., I got ready to go to store to pick up some medicine but my imbalance/nausea was so bad I postponed my trip. My doctor wants me to try Zanaflex (?). I also want to try Topomax as suggested by another user. Next week may be Botox in neck if doctor willing. I guess by the time I go thru all therapy, meds etc., I may turn 80 and still suffering.:mad:

what's Zanaflex? My dr suggested Topomax too...but didn't try that yet. I'm on paxil and the lowest dose of klonopin at night...(2 weeks but not working)

Zanaflex is mainly a muscle relaxer and also prescribed for many off the label issues like migraine, fibromyalgia etc., All these medicines affects brain ofcourse. One significant side effect people reported is it makes you sleepy.

I was on Klonopin for 6 months and one doc changed from Xanax to Klonopin. Klonopin stays longer and not good for me because next day I felt exhaused like a truck ran over me and then I switched to Xanax and now don't take it. Also I tried in the morning and at bed time and benzo sleep for me was disaster.

Xanax in the morning (very low dosage) worked good for me and brought my dizziness, headache, fatigue down and also gave me energy. Weird! One psychologist reasoned it calms the misfiring neurons and keep the brain calm which in turn gave energy. Unfortunately my body got used to that and after few weeks I didn't feel like that so it is either go up or quit and suffer and I quit. If Klonopin never worked then no point in taking. If it worked and then it means your body got used to it may be.

I hate the klonopin and not taking it anymore...i was in bed from 10pm to noon today with a short stop on computer and cereal this morning.