[kikimoma]

My daughter saw the nurologist today and all her tests came back normal. Normal neck and head MRIs. Normal bloodwork. Normal inner ear and normal sinus.

He said that she should be doing much better than she is and that the dose of gabbapentin she is on is a hefty dose. He said that it should be taking care of her headaches. Unfortunately it isn't and she is still light and noise sensitive too. The only thing that the meds do seem to be taking care of is her vertigo.

Anyway the neuro says there is no more that he can do for her. He then suggested she see a headache specialist. He perscribed muscle relaxers to help with the pain until she can be seen by the specialist. He told her that the muscle relaxants will make her even more sleepy than she already is from the gabapentin. He then asked if her eight year old was self sufficient.

Needless to say she and her husband were not happy. Her husband called the recommended specialist as soon as they got home and they can't see her until mid April. He is going to try a couple more doctors on Monday.

I am afraid that a headache specialist will just keep pumping her full of pain meds and not really do anything more than that. She is starting to get gastric distress from all the gabbapentin and OTC pain relivers as it is. Any other suggestions would be appreciated.

[roadrunner63]

Really for many pcs symptoms there is nothing the doctors can do. I take muscle relaxers (soma, 1/2 pill once-twice a day). They do NOT make me tired. They control muscle spasms which means less pain and they help with head pressure. Only thing that does me any good these days (9months with pcs).

[Mark in Idaho]

The research I've read about gabapentin for Chronic Daily Headaches (CDH) show a 9% improvement in head ache free days compared to placebo. This is a very small improvement. One researcher even stated that this difference is not very significant.

The question being asked is : Is it worth the high dose of gabapentin for such a small chance of improvement, especially considering the side-effects of higher doses, I.E. vomiting, dizziness, dysarthria (problems speaking), somnolence (sleepiness), and constipation. Gabapentin has shown to be better for migraines that common CDH's

Aspirin can be taken in Enteric form to reduce gastric problems. Enteric aspirin is coated so it does not dissolve until it is past the stomach. I have been taking enteric aspirin every morning for at least 20 years. I have no gastric problems even though I take 975 mgs per morning dose. The worst side effect is I bleed a lot when I cut myself.

Some people rotate acetaminophen, ibuprofen and aspirin to lessen the effect on their bodies. Acetaminophen is the easiest to get into trouble with due to its effect on the liver. There are blood tests that can be done
occasionally to see how the liver is doing.

Her neck MRI's will not likely show anything because most radiologists do not have the skills to image and evaluate cervical MRI's at the required level for subtle injuries finer than broken bones, torn ligaments, and herniated discs. A classic diagnosis is the catch-all of bone spurs. Research even shows that there is no correlation between MRI's of the spine and symptomless. Patients with serious pain can have negative MRI's and people with drastically positive MRI's can have no symptoms.

There is even a sub specialty within neuro-radiology that is needed to make the most out of brain MRI's.

In my opinion, her neuro's comment <He said that she should be doing much better than she is and that the dose of gabapentin she is on is a hefty dose. He said that it should be taking care of her headaches. > suggests to me that he has very little understanding of PCS or gabapentin. His responses are classic for the uninformed medical professionals.

Does she keep track of her blood pressure? It is likely that her head aches have a correlation to her blood pressure. Keeping her BP at normal levels should be a priority. The concussed brain is very apt to mismanage blood pressure at the slightest trigger.

Soma (Carisoprodol) is a powerful drug and needs to be used with caution. I have used it from time to time for the past 30 years or more. It has always been dispensed to me with extreme caution from the doctor and/or pharmacist. It can be addictive or habit forming.

There is a specialist in the forces of auto accidents by the name of:

Michael D Freeman PhD MPH DC
Forensic Epidemiologist

Clinical Associate Professor
Department of Public Health and Preventive Medicine
Oregon Health and Science University School of Medicine

Adjunct Associate Professor of Forensic Medicine and Epidemiology
Institute of Forensic Medicine, Faculty of Health Sciences
Aarhus University Aarhus, Denmark

Maybe some research into his work will help find some answers. I haven't looked at his work in ages.

I have his e-mail address if needed. I can forward it by PM.

Hope she has some better days. I know how bad the head aches can get. I spent all of Saturday with a head ache. Tough when I wanted to play with my grand kids.

My best to you.

[vini]

hi
after 3 years of head pain I have had little or no help with it my nuerorpsychologist said it it to do with minute changes to the blood vessels in the brain, keeping hydrated helps me a little but pain meds dont touch it, they can not see these changes , and there is no treatment other than pain meds

[kikimoma]

Vini and Mark, Thanks for your replys, I have been away for a few days so I have not been checking the boards.

As it turns out my daughter stopped taking the muscle relaxants after the third day. They did nothing for her but make her so sleepy she couldn't function. That is the bad news

The good news is that her husband met a friend at their kids' school function. The friend's brother is a leading concussion specialist in our area. He does alot of work as a non partisan authority for injured NFL players. The friend hooked them up and my daughter has an appointment tomorrow.

It is my hope that the new specialist takes her off the gabbapentin entirely. It does help her with the vertigo but there are safer drugs out there for that.

I am hopeful that this doctor will actually help her achieve a more normal level of functioning. I'll let you know how things go. We do know that he will be ordering more tests and one of them is sonography of the head and neck. He said that picks up subtle changes than the CAT and MRIs do not.

He has a very comprehensive practice that includes OT, PT, driving rehabilitation and evaluation and various other neuro diciplines. He also said that he will refer out to a neuro-opthalmologist if necessary.

I think this is the best place for my daughter to be.

[Mark in Idaho]

Sounds like you found a specialist with skills and a practice similar to a Rehab and Physical Medicine specialist. The integrative approach will be great.

I will be watching to hear how she does. It also sounds like her hubby has been given the confirmation that he needs to be supportive.


My best to you all.

[kikimoma]

Mark, Her husband still thinks she will miraculously wake up one day very soon and be 100% recovered. Last week he even asked the original neuro how to ween her off the gabbapentin if this should happen. The neuro was surprised and said that no one had ever asked that question.

I do think that today's appointment will be another reality check for him. I don't think he has fully processed that this could be a long journey but he is getting closer to that understanding. He is being supportative. He wants his wife back. He is trying to find a way for that to happen. Full acceptance at this point in time is probably not a good thing anyway. His desire to "fix" her will drive him to try all possibilities.

He continues to push me away as he always has. But he has gotten his parents and sister more involved. They are helping with driving the kids to their activities. His sister took them overnight this past weekend so he could work. That is good they do live closer than I. As long as my daughter gets what she needs and my grandchildren are happy and cared for, I can keep my distance.

[Margarite]

One thing that everyone must realize when dealing with PCS people is that this could end tomorrow, but it could be years and years until this is gone. For me, I kept doing stupid stuff because I was feeling better and thought that it was almost gone and thought that it would go away soon. It wasn't until I started doing a lot of private research that I found that I needed to get ready for the long haul.
Surprisingly this knowledge helped me to become more at peace with my PCS. Now, I do admit my parents and friends still have trouble accepting that I have almost constant pain, but I try to play it down for them, because they don't realize that although this is tough it is the way it is. I have an easier time with it than they because they are struggling with a horrible idea while dealing with the reality is somewhat easier...I know exactly how much pain I am in and I know exactly what will hurt me more and what will hurt me less.

I don't know if I am making sense because today is a very bad day...Oh, well such is life.

Good luck!

[kikimoma]

OK my daughter called and told me about her visit to the new doctor. He is taking her off Gabbapentin. He put her on two other perscriptions She couldn't remember their names but thought one was topamax.

He is also sending her for a sleep study. He believes her sleep patterns have been disturbed by the head trauma and since there is a familial history of central apneas he thought it a good idea to investigate this.

He told her that she had to stop using the sunglasses. He said that she is now training her eyes to be photo sensitive. He also told her that she had to start retraining her balance center to help improve the nausea and vertigo. She is to do this by sitting on her bed and gently falling sideways into the pillows five times on each side a couple of times a day.

I'm not sure what I think of this. I will just wait and see if it helps her. I'm sure there was more to it that she didn't process. She was in the car on her way home and only spoke to me about two minutes. Her husband was driving so he couldn't clarify anything she was telling me.

She goes back in a couple of weeks when she is on all her new meds and off the gabbapentin entirely.

[Mark in Idaho]

The sleep study sounds like a great idea. It is rare for a doctor to suggest one so quickly. Getting off the high dose of gabapentin is also good.

I am eager to see how she does without the sunglasses. I have never heard his explanation of training her eyes to be photosensitive. For me, it is not the brightness that is the problem as much as it is trying to sort through the sensation of so much to see. The bright light over-powers my ability to process the other visual images.

The Topamax is an anti-epileptic but is sometimes prescribed for head aches. It will be interesting to see what it does for her.

The vertigo and nausea exercises are interesting. Getting the inner ear to be desensitized to movement will help. Never heard of it being done this way.

An OT wanted me to practice putting my head between my legs and then back up. She misunderstood my complaint about moving my head as vertigo.

I don't get vertigo. I get a spaced out feeling from moving my head too fast. I don't get the dizzy/vertigo feeling. Just a mental confusion that takes a while to resolve. The pros don;'t seem to understand how this can happen. They tell me that the head movement is not severe enough to cause a concussion like mental confusion.

Hope this doctor has got the right ideas to help her. It sounds like she is off to a good start.