[sr10]

My heart breaks to read of all the suffering endured here, but I'm latching on to the hope and community spirit. My son, 32, suffered a concussion on 7/25/10. The headaches began immediately, violent, severe headaches. He lost all sense of taste and smell. He's lost 40 lbs. 3 emergency room visits since. Most of the ER doctors were very helpful, but try to find a decent doctor in private practice has been a futile search to date. He has a high tolerance for pain meds - the only one he found to work a little was hydrocodone. At one point in the ICU, they gave him morphine delaudid, fentynl and hydrocodone at the same time with only a few minutes of relief. The MRI/MRA doesn't show anything. There was a small bleed at the beginning, but as of the last tests (Sept.), that was gone, but the headaches persist. They subsided a bit about 6 weeks ago but came back in full force. The doctors he has seen only seem concerned with him quitting the hydrocodone, but have not offered any suggestions or options or even listened when he has asked about what to do about the headaches if he stops taking this particular pain medicine. Many of them do not work for him at all and it usually takes a double dose to help enough for him to function. I have asked, he has asked, his wife has asked repeatedly what is he supposed to do about the headaches without the hydrocodone. No answers, they won't listen, they are assuming he just wants the drugs...nothing could be farther from the truth. He hates any kind of drugs and would love to get off, but he still has these horrible headaches. His current neurologist is the very same way. Prior to the concussion, he suffered from depression and anxiety and takes Paxil and Xanex. He also has a long history of not sleeping. He still can't sleep and is more depressed than ever now, we all feel the current medicine and/or dose is not longer helping, possibly due to the trauma of the concussion. Doctors won't listen or do anything about that either. It's time for a change in doctors, but he is has about given up on doctors. I don't know how many neurologists we called before finding one that would see him. Even the ER referrals wouldn't. We will continue to search, but until then, does anyone have any suggestions, found medications that actually help? Ways his wife and I can help? I realize many of you have much worse conditions and you are coping and that gives me hope - this is destroying his life and, of course, as his Mom, watching him suffer is unbearable. I can't even think anymore. Any advice would be appreciated more than I can say. Sorry about the long thread...and this is the short version...

[Mark in Idaho]

I am so sorry to hear of your son's struggles. Hope we can help.

The common med for PCS is Elavil (amitriptyline) in small doses (10mgs or so). I don't know if it can be taken with Paxil and Xanex. Xanex is a benzodiazepine (benzo). They can be brutal. I was on one ( Klonopin) for too long. Paxil at 60 mgs per day takes care of most of my anxiety issues which appear to be related to my prior concussion history.

Does he have any history of concussions? His depression/anxiety can be from prior concussions in a cumulative fashion.

Does he have access to a Physical Medicine and Rehabilitation specialist? Headaches are common with more severe TBI. Maybe a PM&R doc can help. They are usually affiliated with a Rehab Hospital/clinic. The garden variety neuro and GP's are of little help in most cases of PCS.

How is his diet? He should be avoiding all but maybe a single serving per day of caffeine. Caffeine and Benzos are a bad mix. MSG can also make headaches worse.

There is a good resource at http://www.drakecenter.com/file.axd?...vivalGuide.pdf Download and print it out. You can also read it chapter by chapter online at www.tbiguide.com His wife needs to read it as well as anyone who is in regular contact with him.

It will also be good to connect with a brain injury support group. The Brain Injury Association of America has state affiliates who list support groups. If you are outside the US, there usually are similar organizations.

Do a search for past posts about nutrition. He needs to get very serious about B vitamins, D-3, Omega-3's and Folic acid, etc. The prior posts will have lots to read. The injured and depressed brain is in need of serious extra nutrition.

Has he sought help from a sleep specialist? His lack of sleep is likely a big cause of his headaches. He needs good sleep. I am surprised the Xanax and Paxil are not causing him to sleep. Both have serious somnolence side-effects.

I do some of my best sleeping in an easy (recliner) chair. It helps if I have the proper sounds to occupy that part of my brain. I need to have soft and comfortable feelings for all of my tactile senses. For me, that means cotton pajamas and possibly a fleece blanket for my hands. The anxiety ridden brain needs all odd sensations removed.

If he feels fidgety when he tries to sleep, then solving these tactile senses may help. I also take Neurontin (gabapentin) to help my mind and body settle down so I can sleep. Most people tolerate Neurontin very well. It works with the GABA system in the brain.

If you have specific questions, feel free to post them.

It will help if you break up your posts into five or six line paragraphs. Many of us struggle to read long paragraphs. I pasted your post into MSWord and added paragraph spacing so I could read it and respond.

My best to you and your son.

[sr10]

Thank you Mark! Sorry, I will break up into paragraphs. I appreciate all your information and suggestions. I have made a to do list from your ideas.

My son is on amitriptyline - the Dr. said to help him sleep...it doesn't. He takes it at night. He's only on 40 mg of the paxil...he asked for a re-eval on the dosage, but the dr. didn't listen and did nothing. He can take up to 3 xanex before it helps him relax and barely sleep.

His best place for sleeping is also a recliner - with a real soft blanket and a very adorable sweet cat. I'll talk to him about the tactile senses and removing anything odd. He has never seen a sleep specialist, although his wife and I have both tried to convince him to go, even before the concussion.

Ordinary sleep medicines don't work for him. Even the paxil and xanex, amitryptaline aren't enough for a good night's sleep. He is always exhausted. It would sure do it for me!! For a couple of days. We're still working on him about that. I'll tell him about the Neurontin, I know he hasn't tried that.

He has no prior history of concussion. The depression is, unfortunately, genetic. I have it, as well as several others in our family at one time or another. He and my aunt have it the worst.

His diet has gone from excellent - pre-concussion - to awful. He barely eats, doesn't take his supplements like he used to or drink enough fluids. I'm a big believer in B complex and took him a bottle. Unfortunately he doesn't live with me and I can't make him take it. He does take it but I don't know if it's daily. He used to take the omega 3.

He does not have a PM&R doctor - we'll look for one immediately. You are so right about neuros and gps - I think they have made it worse because they do not help at all. I'm appalled at what I've seen of the medical profession the past few months.

I'll print and read the survival guide too, several times. Lots of information here. I really appreciate your response and suggestions. I see your name a lot in the threads I have read. You are very dedicated and helpful. That makes you a blessing! Thank you so much.

[PCSLearner]

I'm sorry you are going through this. A brain injury truly affects the entire family. In my experience there is nothing worse than watching your child suffer.

Mark has offered you fantastic advice.

After trying a variety of pain killers (prescription and over the counter), the very best pain relief we found was reflexology and accupressure. There are no certified practioners in my area, so I "learned" these techniques from the book "Brain Lash" by Gail Denton.

Also, you may want to make sure he is evaluated for any vestibular system damage by an ENT and problems with his ambient vision system by a qualified vision therapist.

[sr10]

Hi PCS Learner, you are so right it affects the whole family! And leaves us all feeling totally helpless.

Mark has definitely given me some great advice. I'm sharing my list (written) with my son and his wife too. We try to stay on the same page to keep the anxiety level down.

You have also offered some wonderful advice too - and I thank you! The pain drugs don't work well and he hates them so the reflexology and accumpressure sound real good and the vestibular and ambient vision system evals are going on the discussion list for the new Dr. so he gets all the right referrals.

I really appreciate your help. I've learned way more from you and Mark in a couple of days than all the doctors put together since it happened.

[Dmom3005]

Hi, I'm Donna and I have suffered with migraines. And balance issues
all my life. I also have a genetic issue in our family for depression and
anxiety. I personally take cymbalta, because it was needed for all my
kids problems.

But I've found it helps with pain also. Next has he ever tried the
melantonin, with is a herb. It is a natural sleep drug. Many will try
that to see if they can sleep. Its something you take about 30
minutes or more before you want to sleep.

Next don't be discouraged if he tries this and needs a large dosage.
Its not unusual.

He might also consider a drug that would be a maintenance for headaches.
One is topamax, and they even say that some of the high blood pressure
drugs are good for this too. I take verapimil for this purpose as well
as a beginning to high blood pressure. And I can honestly say when
I started it I saw a difference.

I see a othomalogist/Neurologist, they specialize in balance and headache
issues. He also sent me to a physical therapist for the balance issues.

I found another great relief for this person, there are some that are
great with headaches. And they can teach others to do this too.

I had a sick headache for a week between visits, and during. My therapist
called in a associate of hers that specialized in headaches. And he got
rid of mine. And it stayed away till a sinus headache two weeks later.
That responded to regular meds.

So I hope you get some relief. Also my massage therapist has helped headaches too. She says my muscles are very tense and tight.

Donna

[sr10]

Thank you Donna! I appreciate all the advice I can get. And take notes! He definitely needs a new Dr. The primary care and neurologist he has seen are awful. I think he is now convinced after this week's appointment. I will pass on your suggestions. I also think he is ready to get on the website himself and I know that will help - all this reading can be exhausting, but I don't have all the details. I know it will be exhausting for him, but certainly worth it.

[vini]

hi & welcome

sorry your family is going through this ,staying awake was my prob early on, a head injury can mess with the chemical balance of the brain . plus the feelings of anxiety, de personalization, the list is long , so messing chemically, with an injured brain, should in my opinion be kept to a minimum , as much as possible, I had a very bad reaction to prozac

zoplicone has help me with sleep in low dose and only when I need it

his doctor is best placed to advise on this,as contra indications should be looked into in depth

best wishes

[vini]

sorry mist a bit of your post

I have had little or no help with my constant daily head ache and migraine its like I am not in the room when I try to get meds for it

my nouro psychologist said it maybe due to changes in blood flow in the brain I had and may still have a CSF leak

sorry not much help but if you find a treatment that works many of us would like to know

best wishes