Dear PCSMom,

Thank you for your informative and encouraging post. I have a question about the EFFEXOR. Does it have to be taken soon after the injury to be effective?

I was also wondering about the accupuncture. I've been using needles (with little result, sadly)in the hands and elbow area to try and dampen down my blasted headache. Did your daughter use it for any other purpose.

Thanks

Dear Hockey:

Her injury was in February 2006 and at first she took Antivert for vertigo. Then, if I recall correctly, she started Elavil in November and switched to Effexor XR in January. She remained on the Effexor for about 1 1/2 years until we weaned her off because her condition was much improved. So, to answer your question, she benefitted from the Effexor even though she did not start on it from the beginning.

Regarding acupuncture, it was mostly for headaches, and the practitioner focused on her neck and shoulders, theorizing that restricted blood flow to the brain was causing her problems. I know he inserted needles elsewhere, but don't remember where.

I hope this helps.

-PCS Mom

PCS Mom

Hello, I'm glad you have posted some positive news.

Donna

Hi Sheds

I go through exactly the same thing with exercise.. can "work out" (be active) and feel fine but tired, and the next day I feel like hell. I suffer badly at work but when i get home i tend to feel a little better. But when my head decides to go, it really goes. Headache was so bad the other day I felt physically sick with pain down the right side of my face

Hi Kate --

I read your email and it sounded a lot like me...my two children were 5 and 7 when I had my head injury two years back, and it was a challenge to manage (I was just so grateful they were not infants/toddlers, as I know that would have been next to impossible). I, too, have a wonderful and supportive spouse, but that does not make up for how miserable this is and how you want to get back to your old self. You are not going crazy!

It sounds like your Neurologist is a least trying a few treatment options. I am on a small dose of Nortriptyline (10mgs), and was symptom free for almost a year. This is a venerable old drug and has few side effects.

Also, I know the feeling of gaining weight during this time...working out became a real struggle, and making and preparing food was really hard with the constant nausea. We are pretty healthy eaters on the whole, but things really started to slip with the nausea (....hard to look at a raw piece of salmon). I found myself getting pizza (for the kids but then I would succomb) more often than usual. But, really do try to stay on board with good eating and just a little exercise. Walking is good, as is very gentle yoga. You need this. Brown rice and whole grain breads...you know the drill, I'm sure.

This is hard for the kids, but also think of it as a different way of parenting, not a "bad" way of parenting. I will confess that I had to simply sit with my kids on the couch some days and watch a movie or TV -- they got hooked on Antiques Roadshow with me and it was quite fun. I am always on the run, and if this experience taught me anything, it was that it's okay to slow down and that I am greatly loved for just being with them.

Hang in there during this time. We all know how hard and lonely this is. We are thinking of you and hoping you find an answer soon.

I'm keenly aware of how helpful this forum is when in despair. I just want people to know that there is hope.

Hi Ckate

Thanks for mentioning the Topamax--that was the medication whose name I couldn't remember and which didn't work to prevent migraines.

I've found that Maxalt, which you dissove under your tongue, really snuffs the migraines. You have to take two, sometimes, and then ride out the post migraine fogs.

Those episodes of not breathing on your own--they sound like Central Apnea. My CA started after my last big concussion (being hit by a car) and were terrifying: you wake up unable to move or breathe and hallucinating like crazy. When these were Finally Diagnosed 32 years later (!) they put me on a BIPAP machine which actually breathes in and out for you, like a tiny iron lung. The problem is that they weigh a ton and are finicky. I now use a CPAP--but I'm not sure how it works. I didn't see in your story if anyone prescribed a sleep study. Definitely worth looking into.

blessings

gershonb

Gershonb,

I'm going to be doing an extended seizure study, and will be hooked up to all the monitors then. I'm seeing my neuro friday to schedule it. I will be at home with the stuff hooked up, and they install video cameras in various locations of my house.

I asked him about the apnea, and he said they might be able to integrate that into the seizure study.

Thanks!

Hey Mark,

My apologies if you have already done this, but can you please update us on your hormone therapy? As my earlier post indicated, I too am beginning this treatment and I thought it would be beneficial for the group if we could both share our experiences.

Thanks.

gershonb,

Have you heard about the breathing pacemeker made by Avery Biomedical ?

Maybe it can get you free of your CPAP/BPAP? If you always have CA when you are asleep, then it might be a good fit?

Check them out at www.averybiomedical.com