I went to a neurologist finally and he said that I simply have migraines...Is that right? Can you have a migraine every day, at almost every hour of every day for 17 months?

17 months ago I was 19 at college in Wyoming and then I fell off a horse. I blacked out for 5 seconds, and had permanent amnesia for 10 hours (meaning I still don't remember what happened during that time). I am told that every 5 minutes I would ask the same questions over and over again. After about 5 hours my friends took me to the ER where I had a CT scan that came back negative.

I had really bad balance, headaches, nausea, memory, dizziness, trouble with light and sound, and just wanted to sleep all the time.

Three weeks later I was sitting watching a volleyball game from forty feet away. I looked down for a second and someone kicked the volleyball right at my head (on the opposite side as was hit before).

All the symptoms worsened but slowly all got a lot better. By summer I only had the constant headaches and drowsiness and a little bit of sensitivity to light and sound.

By the end of the summer even the headaches were almost gone and with them the rest of the symptoms. But as soon as I got back to the stress of school they came back a little and just stayed the same all semester.

That semester I caught more of what was going around than any other person. Before I hit my head I had almost never been sick.

By January I was feeling so much better with only a slight headache and everything else was gone. When my friends asked me to go sledding with them I thought it would be OK if I was careful.

I went down 4 times. Now my headaches are constantly bad. I have a lot of problem with light and certain sounds. When I have a headache (almost always) I have trouble concentrating enough to remember things. I am nauseated for a couple random hours almost every day. I suddenly get dizzy or light headed and have to hold onto the wall or something else to steady myself.

I went to see a neurologist and he ordered a MRI and MRA of my brain and an MRI of my neck. All came back normal. He has put me on Fioricet, Relplax, and Lortab. (not all at once, it is a progression depending on the headache).

Now he tells me that all I have is a migraine. He says that normally people do not get lifelong migraines from a concussion, but for some reason he does not know I have them. He said I will probably have them for the next 20-30 years, so I just need to manage them with meds and avoiding triggers.

He is the 7th doc that I have seen and the first to seem to know what he is talking about, and yet there are things about my headaches that he does not understand. Such as my headaches worsening with my heart rate increasing. Or why my headache bounces around my head like it has ADHD.

Also, I don't want to be dependent on meds and take Tylenol every day for the rest of my life....

Does his diagnosis make sense? Why can't he make sense of my headaches? What are these anomalies?

My family is also very upset. My parents are very frustrated with my more serious personality and with my constant desire not to be out in the sun or not to exert myself. My mom keeps saying that it must be allergies, my dad keeps telling me to try this medication or that one, try not eating this or that, try this that or the other thing.

No doc and no relative understands that this was caused by my concussion. That I know the difference between a sinus headache or a tension headache and my concussion headache. They don't understand why I don't want to do things or be a part of group activities. It is very depressing and very frustrating.

In three weeks I go back to college with intense 20 credit hour semesters. I am tired of barely making it, I want to excel like I did before I fell off a horse. I want to be happy again. I want to act like a 21 year old not a 65 year old. I want to have fun without my pill bottle and a bed to lie down on.


Sorry this is so long and so broken up one of the other neurotalk posters asked me to spread my posts out.


Thanks in advance for all you responses!
Margarite

Margarite,

It sure sounds like Post Concussion headaches to me. The neuro's bewilderment is not uncommon. Headaches are a very difficult to treat symptom.

My TBI friend has had head aches on and off for 20 years. His can cause him serious nausea. If you can control yours with Tylenol, good for you. Be aware than Tylenol can be rough on your liver. Switching to aspirin from time to time may be good. I use Tylenol and aspirin combined for my worst headaches. They work on pain by different mechanisms so the combination can give you almost narcotic like pain relief. I was taught to mix aspirin and Tylenol by my M.D.

Are you getting good restorative sleep? My headaches seem to follow a poor night's sleep.

For the future, you need to accept that you can not do risky activities and just try to be careful. Sledding is a risky activity. There is no way you can reduce the risk.

There are some activities that have some risk but the risk can be reduced by understanding appropriate preparations. A roller coaster ride can be a problem but with proper technique, the risk of shaking the brain can be reduced to almost nothing.

As I have learned, I can only control myself and limited external situations. I can not trust others to be protective of my head. They do not understand the sensitivity I have to brain impacts.

I hope you can use this info to improve your situation.

My best to you.

Thanks for your reply Mark, I have learned my lesson. But now I have to learn how to live, and I don't mean exist, with this. I am not going to be a vegetable because of this. I need to find things I can do to keep fit and to stay alive and to be a 20 year old girl with a love of life!
I will find it, with God's help.

Thanks again!
Margarite

Margarite: Yuck...well...let's see if I can offer anything that might help you get back to being a "20-year-old with a love of life!" My daughter is just shy of the one-year mark from her injury. Her neuro also believes her concussion triggered a string of migraines.

There is a strong history of migraines in our family. The neuro thinks she probably would have gotten them eventually regardless of the injury. She disagreed with your neuro, though, and said it's not all that uncommon to have a head injury start a person on the migraine train. She said as she gets older they may get better, or she may have to learn to live with them. This was in early June.

The same day we saw neuro we started vision therapy. She went a whole month with no headaches and now seems to only have them under pretty intense stress. The nausea is still troubling, although a bit less than before. She can tolerate crowds much better, can read and concentrate better. I don't know if it's the therapy or a magic amount of time from the injury, but she is better. We'll see what the school year brings.

We learned just yesterday that her binocular vision is getting better when she is sitting still, but it's still way off when she moves. This may have something to do with increased symptoms with exercise. IDK.

The trick to PCS (at least the only trick I've learned yet) is to chase down each symptom one by one and rule out potential causes. Nutritional deficits, pituitary/adrenal/thyroid problems, problems with autonomic system, and inner ear issues can all cause problems that seem like PCS or migraine. These are things you can check into one at a time.

She has found great relief (emotional/spiritual/physical) in yoga, reflexology, and accupressure. All the best to you.

Thank you for your response. I am afraid I misrepresented my neuro. He said that because my family has no history of migraines it is strange or to use his word "weird." If my family had a history of migraines then he said it would be completely normal that a concussion would trigger migraines, but not in a person with no history.
Thank you so much for your response!

I am so glad to hear that your daughter is doing so well and I hope that she continues to progress. I am going to try a exercise/healthy-diet routine when I get back to school in a couple weeks.
Today I tried the meds that the doc recommended. Fioricet helped tremendously, I have not had such a good day in sooooooooooooooooooooooooooooooooooooooooooooooooo ooooooooooooooooooooooooooooooooooooooooooo long!

Good luck all!
Margarite

Hi Margarite,

This is just a quickie as I am about to go on vacation but......

My first reaction is that sadly you have injured your brain and you don't have the same sort of headaches as people who get migraine but have not hit their heads.

The symptoms that you describe are really recognizable to me and I bet also to most people on this forum who have had a brain injury.

I am not a medical doctor but I can tell you that I could go over 20 years without getting a headache before I bashed my head and after that I had a headache constantly for over a year. When I say "constantly" I mean that there were no days without a headache, no time of the day when I could say that I didn't have one. It sounds as though you have got a similar sort of thing. The good news is that it can improve. I have been improving. Now, I haven't got a headache all the time. Sometimes I am pretty free of it and I hope that eventually I will be rid of it completely. So, it is worth hanging in there.

I live in England so I can't really recommend good Americal sources of information. I good English one is :
http://www.headway.org.uk/home.aspx
There are a bunch of downloadable fact sheets. The site also covers severe head injuries, so don't get freaked out. But they do have information on what would be classified as minor ones. (I know that there is nothing "minor" or "mild" about it. Believe me, I know, and so does anyone who has experienced one but that's what it gets called.)

I think that you should try to educate your parents about it. It's not allergies. You need to feel supported in not doing as much as you used to, at least until you get better.

You need to give yourself a break and not fight your body when it is telling you that you need to rest. You need to give yourself time to heal and not drive yourself too hard with work.

You are only 20 so your body has a lot of good healing power. You aren't going to get better as fast as you want it too; that's for sure because having those symptoms really really sucks. But you are going to improve as long as you look after yourself, don't make things worse by hitting your head hard again, be patient and rest.

I would make sure that you get well fed too.

There is plenty of good information out there and some of it is on this site.

Good luck.

CS

I just read a book by a women who feel off a horse and found out she had a traumatic brain injury:"Gifts From the Broken Jar" by, PJ Long. I found it because it was recommended by my speech pathologist when I was in rehab for my TBI. It was really helpful and insightful and may be relevant to your situation...check it out if you can.
Good luck,
Christine

Hi Margarite,

I am writing from the point of view as a teacher, which I am, but not working in the classroom presently due to my injury.

You received extremely good advise here on this forum. Heed their words, especially when you go back to college.

My 3 children are college students and I have taught college students. Life there is and can be very stimulating, as it should be to encourage the growth you are seeking. HOWEVER, you are different now.

This is my concern, "In three weeks I go back to college with intense 20 credit hour semesters. I am tired of barely making it, I want to excel like I did before I fell off a horse. I want to be happy again. I want to act like a 21 year old not a 65 year old. I want to have fun without my pill bottle and a bed to lie down on."

My dear young diligent lady, taking 20 credits without PCS is outrageously demanding in and of itself but with PCS, I am very concerned for you.
My daughter, who sounds very much like you, the embracing life to the fullest type, struggled with the type of credit load you are proposing to do. She actually came to the realization, she was over loaded, and readjusted her schedule with her academic advisor, keeping in my mind of her graduation requirements.

May I suggest, you speak with your academic advisor about your schedule of classes and arrange them so as to accommodate the new you.

Darlin' remember the long lectures, the taking of notes, the very long reading assignments, and Oh yes, the late nights writing all those papers on the computer with its glaring back light. All prime territory for headaches for sure, even without PCS.

College is the place to explore and grow. Enter it with open eyes and know you are seeing differently now. Be mindful and you will receive what you need, to become the young woman you so want to embrace! She is there wanting to be.....the only person you are to be in this world.

Peace
Grady Lady

Before my accident I was being treated for migraines. I had had an MRI and tryed many meds and changed my diet completely before getting them under control. I can tell you this, now that I am 9 month into recovering from PTSD and PCS the headache is totall different. They start, travel and last in a different way. I can even tell when I am having a migrain instead of my normal constant headache. I am still on mondo pain meds but it still hurts and I can still tell the difference.
I know when you are in pain and have a hard time communicating and no one has real answers it begins to wear you down and make you desparet. Don't give up or in if you believe that the answers the Dr. is giving you don't fit what is happening to you speak up and tell them. If they won't listen change Dr.s.
Good luck!