We are on day #33 of post concussive syndrome. I've read a lot of scary stories on here and I'm praying for you all and that we will not be at this as long as some of you have. My son hit the back of his head on the boards during a hockey game. We are being treated by a neurologist at Children's Hospital in Boston. Does anyone with PCS experience have an opinion on Amitriptyline to prevent headaches? We are not confident that this drug is the "answer."

While we are waiting for the Amit. to "kick in" and then the several weeks it will take to "tinker" with the dosage, my son is experiencing severe headaches (8+ for most hours of the day). We have been cautioned about Rebound Headaches and have been told to stop all pain meds (motrin and tylenol). Well after 3 days of this we couldn't stand it any more and after consulting a specialist over the phone decided to give him some motrin tonight. He fell asleep in 25 minutes as opposed to 3 hours of crying, moaning and wincing in bed. He's seeing a chiropractor (laser therapy, massage) and a cranial psychotherapist (zero balancing, pressure points) to help curb the pain, but it's hard to tell if they're helping much yet.

I'm hoping things will improve in the next few days, as far as his care anyway. I've pushed our way into the Headache program at Childrens, which is a part of their pain clinic -- but may have to wait a couple of weeks before we are seen there. We have also made enough noise so that our follow up with the Neuro-clinic (after our initial ER visit three weeks ago) has been moved up to Friday from the end of Feb. I'd appreciate any insight anyone might have to help us find the best treatment for our son. Thanks!

[QUOTE=sbosco;195019]We are on day #33 of post concussive syndrome. I've read a lot of scary stories on here and I'm praying for you all and that we will not be at this as long as some of you have. My son hit the back of his head on the boards during a hockey game. We are being treated by a neurologist at Children's Hospital in Boston. Does anyone with PCS experience have an opinion on Amitriptyline to prevent headaches? We are not confident that this drug is the "answer."

Hi sbosco,

I was reading through the forum looking for info on another topic and saw your posting. I had to reply, because my daughter (who is now a happy healthy 19 yr old) was in a car accident when she was 9. She was knocked unconscious for about 20 min and had a concussion. We had issues very similar to what you are reporting for a long time after the accident. She had severe headaches for over two years. She was put on Amitriptyline for about 6 months or so (hard to remember exactly how long after this time!). It helped, but it did not completely get rid of the headaches. Looking back, I would say that her brain needed the time to heal and there was probably no drug we could have put into her that would have completely removed the pain.

It was very hard for us to see her hurting and I bet it is for you as well. We also noticed cognitive effects after the injury. As an example, she was (and still is) a very bright kid, but for the year after the accident would frequently (and seemingly randomly) not be able to do pretty easy math problems. Her teacher, who knew her well from before, commented on this. She did seem to recover from this after about a year or so.

The good news is that she did recover--the headaches got less frequent over time and are gone. It took much longer than anyone explained to us, though. And it was a fight sometimes to advocate for her to the doctors and school.

One thing about the Amitryptyline to watch for is that it can cause tremendous weight gain. I saw this in our daughter and also in a friend that took it. She lost the weight over time, but it made her very uncomfortable.

I hope this helps some, and that you're seeing progress with your son!

hi there sorry to hear about your son ,my husband had ammitriptyline for the headaches and lack of sleep with his pcs and it didnt particularly help he certainly didnt sleep and they fiddled about with his dosage and then gave him another antidepressant to take with it but that didnt work either so i do sympathise with you.My husband has had pcs for over a year now ,but dont be disheartened keep pushing until you get the help thats what i did and my husband goes to rehab once a week now ,hope things improve for you ali

Hi,

How is your son doing today - it has been almost a year since this post?

I'm still desperately looking for help for my daughter who is 15. It is 2 yrs in January since her injury. Her symptoms remain much the same - headaches, dizziness, blurred vision, nausea, fatigue - all from being exposed to noisy situations, light changes, physical activity, reading or concentrating for too long. She also has had 9 non-epileptic seizures in 23 months.

What have you found that has helped?

I have recently been looking at Dr. Walker's Neurotherapy Center in Dallas as an option. They do qEEG guided neuro-feedback. Any experience or knowledge of this good or bad?

Linda (mom) in CT

Dear Linda,
I am so sorry to read about your daughter. I am also in CT and have a teenage daughter with post-concussive syndrome. It was also 2 years for her in January. It has been a long road but she does continue to make progress.....progress feels very slow and can be hard to notice but it is there and that is encouraging. My daughter has not had seizures, I can imagine how terrifying that has been on top of everything else. My heart goes out to you and others on this board coping with post-concussive syndrome. Please email me and let me know how your daughter is doing.

Hi from Dallas!

So so sorry for your family's suffering. My son (head injury w surgery & coma at age 9; persisting "challenges") and I have both been patients of Dr. Walker's (it's been around 4 years ago since we've seen him). Dr. Walker is very kind, compassionate & attentive, and offers many modalities that may be of use. Dr. Walker also is incredibly committed and stays on the leading edge of advances, being very active in the research end of the equation as well as treatment; truly a man with a deeply felt mission to help. QEEG is very helpful in understanding just where the brain is having its greatest challenges, and generally getting a better grasp of what is going on. AND doing these treatments through Dr. Walker is MUCH more likely to get insurance coverage than any other place I've found (even my Medicare covered it... elsewhere just the initial QEEG & interpretation is pretty expensive & uncovered, before you ever get to any treatments.)

All of that being said, neither my son nor I achieved miraculous results w neurofeedback. However, we did meet fellow patients there who did. The brain is still so little understood that what works for one may not work for the next. Just wouldn't want you to set your heart on a magic wand in Dallas.

HOWEVER, in the course of researching re my son's second head injury (he's now in college in Colorado; can't believe we're at this again... this time milder, but seems cumulative - post-concussion syndrome - many functional difficulties), have learned that EEG neurofeedback has made dramatic advances since 4 years ago - so Dr. Walker's current treatments likely have a higher efficacy than those my son & I did with him.

ALSO you might want to look into hemoencephalography - a newer subcategory of neurofeedback that targets oxygen to the specific parts of the brain where it's needed. (Don't rely on me... just google it, and I'm sure you'll get lots of info.) I don't know whether Dr. Walker uses this, but it's one modality I'm currently looking into in Colorado. My son has also started hyperbaric treatments there, since his injury is very recent; don't know whether your daughter's injury is recent enough for this to be a meaningful option.

Last note: I just learned what a MD specialty in Rehabilitation and Physical Medicine, and so very glad I did. (aka Physiatrist) (again, definition/ description readily available online.) If you're like me, you may not know what "magic word" to ask for, but if you're not yet working with a doc in this specialty, you may want to check it out.

Sending you prayers and all the best wishes,
Mom in Dallas

P.S. I have found tremendous relief in "detox." (At a minimum, lots of clean water, green leafy vegetables, & plain chicken & fish, low carb, w no sugar & no sugar substitutes other than liquid stevia.) Your daughter's symptoms might also find relief there. Google "mercury + health", "mercury + candida", acetaldehyde, BPA, "heavy metals toxicity", "headache + toxins." Many things we either ingest or are otherwise exposed to, or which are the product of imbalanced gut microbes, are neurotoxins. (One example is aspartame, which is incredibly widespread - diet colas, "Crystal Light" & so many more.) Anyway, very difficult to find a Western medicine doctor w any awareness of the connection between neurological symptoms & toxins, but Dr. Walker is one of the rare few who gets this and can help. There's SO much to know on this topic - and I understand that it's not where everyone's "inclined to go", but just wanted to make sure you know that this is a possibility you might want to consider.
__________________________

It seems these posts live on and on. I'm happy to report that my 10-year-old, who is now 13 is healthy and strong at this point. In retrospect, the treatment that finally helped the most was complete brain rest for 20+ hours/day. No TV, no reading, definitely no video games, no outings, nothing that would generated elevated brain activity. Baking was a saving grace and he did lots of it. Yes it was torture, and even to this day I don't really know if that was the turning point or if he brain was simply ready to heal. I do know that after about 10 days we started to see some improvement (fading of the seriousness of the headaches) and creeped slowly back into normal life. As of now, all is good. We have not seen any residual effects. He still is active in sports, baseball, basketball and skiing. He got drilled at the plate last year and I thought I was going to throw up right on the spot. He said he was fine, but thankfully my husband was coaching and had him sit for a couple of innings anyway until we were sure. Concussion #2 will always be a fear for me, but I know we are in the lucky group. Those living with PCS are in my nightly prayers.

I just found this forum tonight and am hoping that I can find some advice. My teen daughter is now 11 days post-concussion, although for the first few days after her fall she kept up with sports and school as we did not realize her symptoms were a concussion (we feel terrible about that). So we may have made things worse by not slowing her down right away.

She was diagnosed by a local general practice doc and put on vicodin because tylenol was not working for her severe headaches. This doc does not think she needs to see a specialist or have a brain scan. He thinks she should just rest and take the meds and everything will improve.

The headaches are not improving at all. They return when the vicodin wears off after 5 hours or so. She cannot concentrate on schoolwork. She has been doing full rest now. Missed a week of school so far.

I am concerned about this drug being so strong for a young person... I am concerned that we are not getting good medical advice... and I am just realizing that this will be a long journey for her, so I am grieving too.

What kind of doctor should we try to see? What is the general advice in these situations?

Many thanks.

I am so sorry to read about your daughters head injury. My daughter was 11 when she was injured. She still suffers with post-concussive symptoms and she is now 13. The headaches remain terrible at times but are less frequent.

My daughter fell during a ski lesson and got her concussion. The ski instructor told her she was fine and to get up. She was very dizzy and fell and hit her head a second time within minutes. A second hit to the head before recovering from her first concussion made this so much worse for her and has prolonged her symptoms. (I mention this so you don't worry that your daughter will still have these headaches and symptoms years from now. Most kids resolve within months.)

I do think that the care and advice that you are receiving right now is very important and can make all the difference. I would suggest a pediatric concussion specialist.

The most important thing we have learned is to stop whatever she is doing and rest immediately when a headache starts to come. Rest or sleep until the headache passes. Make a note of what she was doing and what the environment was when the headache started so you start to spot triggers that cause headaches.

I too would be worried about the vicodin and would want a second opinion on that asap. My daughter was only able to take Advil and Tylenol because of her age and weight at 11. Advil always worked much better than Tylenol. I always wished that they would prescribe a stronger pain med to give her some relief from the headaches, but they would not. Perhaps our doctors are just more conservative in that regard and it is fine. I would suggest getting a second opinion to be sure.

The only thing that really took her pain away was sleep. She slept a ton in a very dark and quite room. For her it was important that we kept the house very quite when a headache was present.

It is awful to watch your child suffer with a headache and not be able to make the pain go away or at least tell them when they will be all better. It is such a frightening and helpless feeling and my heart goes out to you.

Right now your daughter's brain needs to rest and recover. Don't worry right now about missing too much school or make-up work at this time. It is still very early. There will be time to make-up and catch-up once her headaches are under control.

If there is a way to privately exchange phone numbers on here, I would be happy to talk to you if that would help.

I am glad that you found this board so early. Many supportive people here and tons of information.

Dear snowydaykids,
I feel your pain. Please know that you are right to be concerned and to question the doctors treating you daughter. Tralee has some good advice, and mine is more of the same. I am fortunate that my son is fully recovered. His main symptom was headaches as well, and we relied heavily on Advil. At one point, one resident doctor from Children's hospital in Boston had us concerned about "rebound headaches" from medicating over too long of a period, so we dialed back the drugs quite a bit. All it did was make him suffer more and once we got connected with doctors who specialized with concussions, they dismissed that theory entirely. I would recommend finding a doctor who has lots of experience with concussions.

We saw Dr. Neal McGrath (parent of concussed son), a neurophsycologist in Boston who conducted the ImPact test on our son. In an ideal situation, a baseline reading is taken prior to injury and serves as a barometer for the healing process. The test was still very useful, and I'm happy we have it in place in case (God-forbid) we get to #2. Google Dr. McGrath and you'll find his website.

Also, the advice above about not worring about school right now is so true. It was very difficult to put our whole families' lives on hold. We cancelled a Disney vacation, avoided hosting any gatherings and declined many invitations during that time. The hardest part was not know how long we would have to live like that. I'm happy to talk with you personally. I feel for you as I know how helpless and desperate I was. Feel free to e-mail me for my phone number: s.bosco@comcast.net. Good luck!