I just came back from an appointment with the neurologist. He suggested the Botox injections. They are done every 3 months and suggested 2 sessions before you could tell if there is any improvement.

The cost is $800 for the botox and $175 for the injections. He said some insurance will not cover the injection price.

He had discuss Topomax for headaches but apparently they can cause kidney stones and I have a history of kidneystones.

I have to keep a headache log for a couple of months to get a baseline prior to treatment and he wants me to be finished with other treatments before starting this.

I still have a few more weeks of cranial sacral therapy at the osteopathy.

Starr, I am sorry that you are so discourage, I know how frustrating it is to keep looking for answers and not finding them.

Frankly the botox thing kind of scares me. After all botox is a poison.

Best wishes.

Norma

Please do ask your doctor about possible side effects.

My mother also suffered a concussion from a fall one year ago. Her neurologist also began botox injections into her scalp along key areas of her headache.

Botox seemed to work for her for about 8-10 weeks. She went every 3 weeks or so. After 12 weeks, however, she has had an on-going headache and painful scalp at the locations of her injections. This happened about 2 months ago.

For her, botox provided temporary relief, but long-term, she feels more pain along with her headaches.

I am also at my 19 month mark with daily headaches, vision problems, chronic fatigue. I'm on noritryptiline which has stopped the weekly migraines (but if I drive on freeways or read or use the computer too long, they are triggered)--but no other relief.

My neurologist is at a wait and see approach, but I feel frustrated in this in between stage of feeling a bit better but not quite to return to work or daily life.

Hi Starr,

I had a lidocaine injection to block nerve pain after the new neuro-opthamolosit told me I had occipital neuraligia. I was in the middle of a five day massive headache and it went away almost right away. Stayed away for a few days! He said that if that worked, he can add a little steroid to the lidocaine and some people get a lot of relief (weeks!) from that. I may try the next time my headache makes me want to die!!! here is a website that mentions it in a middle paragraph:
http://www.headache-treatment-option...neuralgia.html

Norma, to the price of the botox! Knowing that, botox will not likely be a viable option for me. Not unless our private insurance is going to cover a good chunk of it.

Mokey, we tried the lidocaine with steroid injections for occipital neuralgia over a year ago and unfortunately I did not get any relief from the injections at all. I'm glad it worked for you... I hope it continues to help you!

I tried a few sessions of acupuncture, but the woman that did it was such a spaz I had to stop going. She'd do things like bump the table I was laying on and startle me, or walk past me and knock the needles out of my hand. It was nuts.

I wouldn't be opposed to trying again, but I'm just so tired, I don't know how I'm supposed to find good practitioners and avoid all the bad ones. I just don't have the energy to do it. We don't know many people here to ask for recommendations and just go and try out people stuff is so exhausting.

After 2 years, its hard to look back and realize you're still in the same place as you were right after your injury with no progress. I'm still just as tired, my head pain is just as bad, I'm still walking with a cane and having regular falls due to balance issues and I still have no ability to remember a darned thing!

Guess this is where I'm supposed to be practicing acceptance of the "new me"... but that's a pretty bitter pill.

It would be a bit easier to believe in recovery if there was any evidence of any in the last two years, but even on the MRI report my doctor wrote in the "Clinical History" part: "Post Concussion syndrome. Recently headaches are increasing. Declining function and balance."

Not easy words to read.

Starr

Starr,
Don't lose hope. All research shows that the brain continues to heal, improve, make new pathways. Our job is to all the pathways to be formed. Positive thinking makes new pathways, as does negative thinking! Not always easy to be positive, though. If you continue to challenge yourself to the point of discomfort, that can be beneficial. There is no magic in the two years that health professionals tend to refer to. The brain learns and heals and repairs your whole life.
A lot of research indicates that mindful meditation can make new pathways in the brain and can be very good for pain relief. I had a migraine starting yesterday morning and decided to lie down and try to meditate...took a pain killer (migraine pill) which usually doesn't work. But it did yesterday. Maybe a coincidence!

There are some great mindful meditation programmes in Ottawa and some professors and psychologists who are involved in running courses. A friend of mine took one with a prof from Ottawa, and she told me that he had had a very bad concussion and understood the issues faced by people with concussions. I wanted to take the course offered in my city but I was not at the stage where I could sit (lie) through a course. Perhaps you are not there yet, but it may be worth exploring.
I downloaded some podcasts by Jon Kabat-Zinn who popularised mindful meditation. Perhaps you could listen online?

I feel for you. Just trying to encourage you! Hang in there. You will see progress. I know my eyes are still a problem, but I see progress in balance, hyperacusis, and cognitive issues. Even memory. But it is very slow, no doubt!
thinking of you, and wishing you strength!

Hi Starr,

Sorry to hear about your injury. I am just awaiting my MRI results and I will get them this week.

ABI or not I am much more positive about things, my Neuropathic pain is well controlled by 30mg Cymbalta and 100mg Lyrica daily. I work full time in a stressful job and can tolerate exercise (gym) upto 3 times a week.

I am not sure where I would be without the medication I take and I can no longer drink alcohol because of it, but I have my life back all be it in a slightly altered form. I am a year and three months post injury.

Good luck and I hope you recover.