Hi --

I am suffering with PCS after taking a fall and banging my head on the ice last December (8.5 months ago). It has been, at times, debilating and I am beginning to feel like this may never go away. I had a couple of CT scans and an MRI which have been negative. I have seen a chiropractor, a cranialsacral therapist and physical therapist, and nothing seems to help. I live in Boston and went to the head trauma center at MGH, and they basically told me the only recourse for PCS is to wait it out.

I wake every day with a head-throbbing (from the point of impact -- back of my head), stiffness in my shoulders and back, and nausea. On a good day the nausea goes away after a few hours, and on bad days it is coupled with an overall fogginess that with me all day. And, to add insult to injury, I am no longer able to tolerate the smell of coffee, even if it's just someone carrying a cup into the room.

At the six month mark, I had a brief respite of feeling much, much better. For about four weeks, I felt like I got my life back. I started to work out a little, and the neurologist put me in physical trherapy to get some strength in my upper back and electrical stim for my tight neck. After a couple of weeks (and yes, probably overdoing it with projects at home after six months on hold....) the symptoms returned, with even greater intensity. Today I felt so miserable (could barely hold up my head, throbbing "heavy" head and nausea) I went into the ER. They did another CT scan, and a spinal tap to check pressue on the brain and to rule out other conditions. Both were negative.

So, a couple of questions for this group....Does anyone see any (even mild) activities that contribute to a relapse? Also, has anyone tried alternative therapies (accupuncture. osteopathic doctors) with any success? I am currently not on any meds execpt Ibuproben.

I have tried to have a good attitude about this so far, but I will admit that I am starting to panic that this is going to be my life. I don't go out at night, have not worked out in months (even riding a bike seems daunting) don't drink and basically live pretty simply. I have two young children and it is all I can do to keep the home fires burning. My spouse is wonderful and jumps in 200% if I am having a rough day. I'm just hoping for a light at the end of the tunnel.

Thanks for your feedback.

Hi goodscout, I'm so sorry that you have to go through this PCS. There is light at the end of the tunnel! I suffered from PCS after a bike vs. car accident in May of 07 and am doing much better now. I had similar symtoms as you with the morning headaches and fogginess and some nausea. Last Dec. my neurologist put me on a low dose of Elavil and that helped a lot with headaches. Then in April I found out that I had a misaligned vertebra in my neck and my family doctor sent me to a chiropractor. He did therapy with electrical stimulation and ultasound to losen up the muscles in my upper back and neck. I have to say I was skeptical, but the chiropractor has helped me tremendeously. I am still going ever two weeks. I started to ride my bike again this May and at first some of the PCS symtoms returned for a few days. Now I can ride for 1 1/2 - 2 hours without getting dizzy or foggy. I still get some headpain and tightness and use ice on my neck and do some stretching exercises. I also continue to take 10 mg. of the Elavil.

Hope this helps and you will get better soon.

I just remembered some advice from my chiropractor, he told me to get enough potassium and magnesium in my diet and to eat a small snack (like a banana) before going to bed at night. Muscles can get depleated of nutrients overnight and tighten adding to the morning headaches and heaviness. Drinking sports drinks might help too.

hi there my husband has suffered from pcs for over a year now and one day is never the same as the next .We are in the uk and he goes to a rehab centre one day a week for people with brain injury and they have advised him to take vitamins fish oils etc that are particularly good for the brain so if you have access to the internet you could look them up , my husband isnt able to work ,do you work ?take care ali

magnesium and cq-10! my neurologist at U of Pitt Medical Center put me on them and said that for some people they can make a huge difference. i didn't notice it much but she said they don't work for everyone.

Goodscout: I want to address your question of alternate therapies. I won't go into my teenage daughter's history -- you can look it up, if you want. What helped her were: (1) acupuncture; (2) homeopathy/osteopathy (we found a guy in NY who practices both); and (3) Effexor (she started on Elavil). While the meds are classified as antidepressants, the use of low doses in PCS is to help re-establish nerve pathways. Now, after 2 1/2 loooooooong years she is practically symptom free. The hardest part is maintaing a positive attitude. It's so difficult when you are consumed by misery and despair. But know that time is a great healer, and while you may never be back to the way you were before the accident, you will learn what exacerbates your symptoms and make the appropriate modifications in your lifestyle. Good luck to you.

Hi, I'm Donna

And I was in physical therapy from the very beginning of my PCS.
Reason being I had a stiff non moving neck on the right side.

But they did lots of different things to try and get it to move.
But they also thought about the pain I was in. They used
hot packs, with hot towels. Or at times we used the cold packs too.

Sometimes we used ultrasound and then sometimes we had just
a type of massage because I was just aching and couldn't take
the therapy.

But I have been having issues with a neck bulge for about 4 months.

And physical therapy didn't work, so my therapist suggested a very
good massage therapist. Who happens to be in my price range.

And honestly, I can say she is doing wonders for my neck, headaches.
And I have rocks at times for my legs and feet.

She has just started to do massages for them too.

And I can walk without having to worry about falling. Its a big thing.

Good luck, let me know through pm if I can help.

Donna

I wake every morning with pretty bad stiffness in my neck and upper back and sometimes in the night too. I've always put it down to stress as I would get the same thing before my accident at times. I stress terribly over the thought of there being little bits of damage in my brain (thanks to all these theories about PCS) and the prospect of being permanently mentally unwell. If the problem is in your neck and you experience stiffness and fogginess, that sounds much more like stress/spinal issues than PCS (whatever PCS is!!).

Hi..sorry for your pain! I practice in headache medicine and there are a couple of things I think are going on..you have moved into the chronic headache phase of post concussive syndrome since you are more than six months out..but the good news is that the sooner you get treatment the quicker the headaches will come under control. The longer you wait the more difficult it becomes..people who have this headache for a few years are harder to treat.

So what to do? Find a neurologist who specializes in headaches..until you get in ask your doctor to put you on Elavil..low dose 10mg at night an hour before bed. this is the drug of choice for post concussion headache AND treats neck pain. You might have to increase the dose slowly and give it 90 days to have the full benefit. I suspect you have some aspect of whiplash to the neck going on..start physical therapy at the same time and get off the ibuprofen. This causing analgesic rebound headache syndrome.

Over time, chronic pain results in low level nausea.

Alternative methods unfortunately don't work too well for this type of headache..medication, regular sleep (go to bed and get up same time every day) and rest is the best bet.


Good luck,
Mary Kay

Thanks to everyone for your thoughtful and insightful responses. If seems like there is some common threads and I will move forward on these. I will say that I never was a part of an on-line forum before, and this has been a really heartening. I don't know anyone that this experience with a concussion, and I was beginning to feel so lonely (and a little nuts!). Thanks again.

Goodscout

thank you for posting this lord it helps so much i heard antidepressants did not help