Chronic headache pain/post concussion syndrom
 

Hello,

I am a new member to neuro talk and I am seeking some advice. A drunk driver struck my son and I in February of 2009. We were hit at 70-80 mph and the impact literally ripped my seat from the floor. Thank God my son was OK but I suffered a traumatic brain injury and all the hell that’s associated with a TBI. I was struck again in June which caused further damage to my head/brain. To date, I suffer from chronic headaches and have tried a number of procedures to prevent the debilitating pain. Including radio frequency nerve lesioning in my neck. Stress is a huge factor in bringing on the headaches but life is full of stress so I need sound advice. I have had a headache every day since Feburary 9, 2009. I am tired of the drugs, tired of the false hope and most of all, tired of the pain. Anyone have any ideas? I pray someone in this forum can help me.

Thanks for listening.

bootsins,

Until about 6 weeks ago, I had daily headaches ranging in pain from 6-7/10. My accident happened 12/22/08. Since the accident was negligence by hospital staff, the neurologist who was assigned to me I feel didn't want to admit that I had any PCS symptoms because that would have admitted fault. So, after 9 months of trying to deal with her and the headaches, I finally got a second opinion. The neurologist that I have now is so willing to first of all listen to my complaints which was not something the first one was willing to do. We have tried different medications. First was nortriptyline (didn't like the side effects - nothing great, just increased weight and decreased libido - could have been worse, but not exactly what I wanted). The next was propanolol, but since my heart rate is normally low, this put me really low and he didn't like that fact. So, now I am on 45 mgs. of Topomax and have been able to deal with just really low grade headaches on a daily basis. Some days are better than others, but for the most part I can finally function.

It does get extremely frustrating dealing with headaches. It affects everything in your daily life. My saving grace was switching neurologists. I really feel that you have to find someone who is knowledgeable with PCS and does not discount your symptoms and the way you feel. I started keeping a journal every day and could tell how when I worked out too much on one day that the next day I felt considerably worse. That way I could put a handle on what may be causing the headaches. I also could take this to the doc so that he could see what was going on. He said to me at my last appointment that if he could get my headaches under control I would feel much better and he was right. I don't care to be on any more meds that I have to be either, but if you can find one that works...

We had a town "frolic" this past weekend where there is a midway, music, games, food, etc. I have a hard time with loud noise but the kids wanted to go. I knew that the next day I wouldn't feel so great. I know that I should wear ear plugs, but I never seem to think about it until after the fact.

This may not be any comfort to you, but I honestly thought that I would never get over my headaches.

You ought to get a good supply of ear plugs so you have some in the car and at home and anywhere else you may be on a regular basis. Sometimes, you can put them in as a preventative, other times, you will realize that you need to put them in after you notice the sound level.

For me, it is not just the sound level but also the mix of different sounds. I use them in movie theaters, auditoriums, etc. Most sound systems are set too loud due to the needs of those who have hearing effected by loud music.

My wife always has some ear plugs in her purse just in case I need them. Sometimes, I will forget about the sound and she will notice me starting to get spacey eyed and offer them to me.

Bootsins - I can relate and understand. It sucks. I've had a headache every day since Mar 2009. Some days are better than others. My advice to you is the same advice I've given myself - be patient and manage things the best you can in the new "reality" you are currently facing. Look for small victories. It's a test of your character and when you do get better, there's a good chance you'll be a better person for what you've been through and can help others in some way based on your experience.

I don't have a lot of advice to give as nothing has really worked for me other than time - I'm better today than I was 6 months ago. That's the tough thing. I don't think there is an overnight fix.

Try to reframe your situation for perspective - whatever it is it could be worse.

Stay positive - it probably will get better.

Good luck.

welcome
 

hi bootsin

the head ache is the worse thing it gnaws at our very self, if I find more than temporary relief from my daily head pain, I will let you all know, my search continues

best wishes

I also had non-stop, everyday HA's and/or head pains for over 19 months post-injury. It's crazy, I know, when you try to communicate this to a physician who, you learn after-the-fact, is in no way at all whatsoever
"On Your Team" trying to genuinely help, support & guide you through this maze. (They just simply 'don't know'.) It is, I know, exasperating beyond belief.

My PCS symptoms, such as HA, head pain, dizziness, vertigo, nausea,
lack of stability in my balance/walking/navigating stairs, etc., do increase under over-exertion either physically or mentally, e.g too long engaged in "over-extended, over-taxed, over-time use of my brain" in higher-level functioning. I might be able to do this by now for a couple of days, yet then, I'll have to allow shut-down of my brain, to recover, recouperate, by perhaps sleeping for 12 hours and/ or taking genuine "time out" for a couple days from any outward-directed focus/utilization of higher-level cognitive functioning. (By now I've hard-learned that I simply must/have to allow myself total, unquestionable permission to "Rest, Rest, Rest" when I know that I need to do so.

Thinking of you, bootsin, and truly holding the faith for you that you will sooner than later be relieved of the incesssant HAs.

There is a lot of genuine, first-hand experienced/knowledgeable, intelligent sources, i.e. forum persons here with highly-valuable info, medical/scientific, & journals info to share and super-heartful, genuinely caring supportive persons here. Please do keep us posted. So many are truly here "for" you.

Sincerely,
Theta Z

Theta Z,

You have hit the nail on the head when you said <By now I've hard-learned that I simply must/have to allow myself total, unquestionable permission to "Rest, Rest, Rest" when I know that I need to do so.>

It is very important to learn to store up mental energy for an intense event and then to prepare to rest after an intense event.

The only problem with this is this preparation leads others to believe that you can tolerate or preform at this intense level anytime you want. They do not see the before and after accommodations.

I prepared like this for a Work Comp hearing with an Administrative Law Judge and he ruled against me specifically because of my ability to perform for this short (2 hour ) period. He disregarded the fact that I had to keep my eyes closed during the hearing so I could maintain my concentration.

I wonder how many jobs he is aware of that can be done with one's eyes closed.

PCS is consistent in one thing. It teaches you the best lessons the hardest way.

I know what you are going through. I have had daily headaches for as long as I can remember. I am 26 years old. I was diagnosed with a porencephalic cyst last year. I also have chronic, frequent migraines. None of my doctors have ever really believed that I have horrible, debilitating headaches daily. I have visual disturbances, nausea, vertigo and short-term memory loss as well. My suggestion is to pursue alternative treatment options, seek a second opinion (or more if necessary), and take it one day at a time.:hug:

Thank you, Mark, for these two basic truths of PCS.
And, Bootsins, this is the wisdom of cumulative PCS experience speaking; most unlikely to ever hear such basics from MDs.

I thank all of you for your advice and support. I am an AP at a high school and this past Thursday I muddled through and fortunately, graduation went fine (for the kids). I on the other hand, woke up with a pounding headache and could not work. These damn things affect every part of my life and I am finding it difficult to control my anger and hostility both at home and at work. If I had to do it all over again, I would not have gone back to work since the headaches have such control of my life. I will persevere but I still haven’t figured out how.

Thanks to all of you.