Hi,

I suffered a TBI and ear damage in an explosion in Iraq 4 months ago. I was knocked out for a couple seconds. Initially, I thought I was OK, I had headaches and tinnitus right afterward, but was told these would go away with time. Then, I developed Eustachian Tube Dysfunction followed by a nasty "staph like" drug resistant infection. I have tubes in both ears.

Although I had headaches from the time of the blast, the headaches became much worse about 2 1/2 months ago. This was troubling because it was about 1 1/2 after the blast injury. Most of the time I have minor head pain...more of discomfort variety. Then they got more severe. I began to get migraine like headaches (2-3 a day)...some so severe it would bring me to my knees. I would have to lie down in total silence. (sensitive to light and sound). Usually, they would last about an hour or two--in which I couldn't do anything. No specific trigger...they might happen as I was sitting calmly reading...you never know. Also, I got other TBI symptoms...dizziness, I was irritable...even at minor things. I also began to forget things...like shopping lists.

Anyway, I've been seeing neurologist. I was intialkly prescribed Tramadol for the pain, and then Nortriptyline for migraine prevention. I started at 25mg once at night. That decreased the headaches probably about 50% then moved to 50mg at bedtime. That didn't really help the headaches anymore, but I began to notice the side effects. I was REALLY drowsy and I started to have mood swings (I'd be sad or anxious for no reason). So, we decided to go back down to 25mg again. Also...my DR is trying to get me off to use Naproxen instead of Tramadol if I can. That was last Tuesday.

This week has been rough. So far, the moods got worse as i went down. I had a pretty bad anxiety attack Friday for no reason at all. The headaches have come back...worse with the 25mg than before. Still better than nothing, but not as effective as before. Naproxan does nothing for me except upset my stomach, Tramadol works...but it isn't as effective as when I first started taking it (it takes more for the same effect).

So...my question...what migraine preventative medications are peaple using? My Dr mentioned Blood pressure medication and possibly anti seizure. What about side effects? Does anyone take a combo (anti depressant and hiogh blood pressure). Help..this really gets me down. I don't like the way I feel with the Nortriptyline....but I can't stand the pain...that is worse.

Nate

hello nate sorry to here of your injury TBI PCS has some odd symptoms but we all seem to find it hard to get the docs to help us, army docs can be a bit set in there ways , so i,m glad you are getting some medication. I should imagine you have some PDSD issues as well, which is understandable, from what I have learned so far these things take time

kind regards vini the kiwi

Nate, I'm sorry to hear about your injuries. I've suffered from migraines for about 13 years. At my worst I would get 4-5 migraines a week. Each migraine would last between 12-48 hours. I was lucky to find highly motivated doctors because both my primary physician and my neurologist are fellow migraine suffers.

I can completely relate to your description of the side effects of Nortriptyline. My doc put me on Ametriptyline, which I understand is a very similar drug to Nortriptyline. I started the same way you described, with a very low dose (only 5mg) then ratched up to 25mg. This really helped me for about a year. Although, I did experience the same side effects as you, very tired and some strange mood swings. My experience with that drug were that it would work well at preventing the headaches for a while then I would platue and my doc would step up the dosage. At the end of a 3 year period I had slowly ramped up to 300mg. That's when I called it quits with that drug. I could no longer function normally. I missed worked, passed out in the shower and cracked my head open, finally enough was enough.

Then I moved on to all of the other drugs you mentioned. I have tried epilipsy drugs, anti-depression drugs (these I hated they killed my sex life and made me act strange). I've been on anti-seisure drugs, blood pressure drugs, my neurologist even enrolled me in a drug study of a new experimental medicine.

Some of these drugs provided some small benefit. But they all had side effects, most were tolerable. But none of them really seemed to work all that great for me. Finally, my doctors kind of threw up their hands and said we had exhausted all of the medication choices and asked "which one did you like the most?" This of course was over a period of about 10 years, because each drug you have to ramp up to the full dosage, then ramp back down if you want to stop. I found it took about 4-6 months to try a new drug.

I really didn't like any of them and none of them were very effective. That's when I felt desparate enough to try alternative therapies. I tried two different forms of chiropractic treatments, a special bite guard for your teeth, holistic herbs, colon cleansing (not fun), crazy strict diet regimines, essential oils.

Finally, one of the things I eventually tried was acupuncture. I have had really great success with acupuncture, better than any of the drugs I've been on. Best of all there are no side effects. One thing you should note though is it takes time to sort-of build up the effect. When I started going I went twice a week for about two months before slowly tapering down the frequency of treatments.

Now, I go once every three weeks and this combined with a lot of lifestyle changes are pretty effectively managing my migraines. No I only get a migraine about once ever 10 days or so. When I do get one the pain is much less severe and it last only about 18 hrs. When I get a migraine I take a Frova (frovatryptan). These pills are expensive. My insurance only allows me 4 per month.

So I totally recommend investigating acupuncture. As you can see it was like my last choice because I'm not one to buy into what I call hockus-pockus, new-agey, holistic stuff. But I got so desperate I didn't know what else to do. One thing I learned about acupuncture is that there are two different styles, Chinese and Japanese. The Japanese style apparently uses smaller needles and I definitely prefer it. I know alot of people have a big fear of needles and they picture what they see in the movies, some poor schmo lying there like a porcupine with hundreds of needles in them.

Well, that has not been my experience at all. When I see my acupuncturist he has to tell me when he is finished because I can never actually feel the needles going in or coming out (they are so fine). Secondly, he only puts in about 6-8 needles one on the back of each hand between my thumb and forefinger sometimes one in my forearm, and then one on each ankle and on the top of my foot between my big toe and the next one. Then you just relax for about 30 minutes and leave feeling really mellow and destressed.

Best of luck,
Gregg

Hi Nate..you are describing a classic case of post traumatic headache syndrome..a chronic daily headache with breakthrough migraine. Tramadol over time may make the headaches worse as will Naproxyn....

In our clinic we treat this headache with IV infusions of steroid for two days then taper the steroid. Amytryip or nortryp are the drugs of choice for the daily headache but unlike migraine the dose must get higher..50-75mg at night. Generally it takes 90 days to get the full benefit of the drugs. Many patients also respond when the above drugs are combined with low dose Topamax. Seraquel with Topamax is a good option too if you cannot tolerate amytriptaline..have you tried this one? It really is the first line drug (brand name Elavil),.

Many of these drugs used for headache are in different classes so don't let that scare you..for the migraines you need to be on a triptan like Imitrex or Maxalt.

If you haven't seen a headache specialist ( and no..not all neurologists know alot about headaches) get to a clinic if you can. MAGNUM website has good resources and I have listed my resource page...I practice in a headache clinic.

Good Luck!!
Mary Kay

Thanks to ALL of you for your help. I feel so lost--this is unlike anything I've ever experienced. It hit me hard because I thought I was going to be alright...then about 1 1/2 months after injury things began to go downhill fast.

I think Mary Kay is right...b/c I almost always have low grade pain and then Migraines will ramp up all of a sudden. No rhyme or reason....although your typical stressors will make them worse. Activity will almost always trigger a migraine of various intensity. I guess my only saving grace is that usually the cycle is short--usually 1-2 hrs but Saturday I had one last 8 hrs--my longest BY FAR and they are getting worse.

So....more questions:

-- Do you think I screwed things up by going down to 25 mg Nortriptyline? I was feeling weird emotions and the drowsiness was affecting my work (even though I took them at night). Now, it seems the 25mg is not working as good as it was before...still better than nothing...but I'm bummed I'm not getting more relief. Do you think I just need to give the Norti more time? I was only on 25mg for 2 wks then 50mg for 2 wks more before I went back down.

-- I don't like the Tramadol....but it does work for pain relief. Sad, but sometimes the pain is SO debilitating (it has brought me to my knees writhing in pain)..that I'd do almost ANYTHING for it to stop. Even if it meant a headache down the road....just so it stops! What would you recommend as a pain reliver once I get a migraine? I've heard Frova, midrin, will naproxan+Imitrex do anything for me (given I haven't felt any relief with straight naproxan)?

-- What about Topamax?...I've heard that thrown around as something to try...

-- My Neurologist mentioned maybe trying a blood pressure med next (maybe in conjuntion w/Norti). An interesting side note...I've always had good(i.e. low blood pressure). No problems ever...usually in the 120/70 ballpark. Since my injury...I've had higher BP. A couple times it's been like 145/90....never had a problem before so I'm wondering what's going on. Is this an effect of my injury, or the meds I'm on? Anyways, that's why the Neuro wants to try BP next. But I haven't heard to many good reviews on the BP meds....much more people with success on the anti-seizure route...

-- As far as side effects--the mood swings with the Norti bothered me. I'm already got some mood issues because of the TBI so the Norti just added to it. I've also got some memory/concentration issues....also 30min amnesia after the blast I simply do not remember. That scares me.

Anyways...enough babbling. Thanks again for your help.

Nate

Mary Kay...

Could you please describe how this is different from a classic migraine. Although, my headache is on BOTH sides. It starts above the ears and spreads up and back of my head. Very rarely in front...but if it gets to bad it will be all over.

Pulsing pain...almost like something trying to get out. Can get very severe.

Also...my MRI was normal...although this was 4 months after injury.

Nate

Hi Nate...post traumatic headache can have a daily headache that is global, or on both sides of the head. Pain in the back of the head may be related to the whiplash type of injury that also occurs and could be occipital neuralgia or radiating pain from the neck.

The drug of choice for post traumatic headache is amitryptaline but the doses have to be a bid higher than what is used for migraine..50-150mg per day. I start by using low dose and moving the patient up slowly every few weeks..important to stick with it as it takes 90 days for the brain to catch on and start to settle down. Low dose Topamax (again tapered up) is combined with this..

If you headaches are very severe at this point you might respond to a week or two of steroid to break the cycle..then you taper off the steroid..important too to treat mood. Depression and anxiety only make headaches worse!

Unfortunately, alternative methods don't work too well when headaches are post traumatic and severe. Great for migraine but not this until you improve a bit.


Good luck..
Mary Kay

Hey,

Thanks to everyone for their help. I had a follow up with my neurologist yesterday and we're going to try a few things. She prescribed Topamax 25mg each night. Also, I am to try Imitrex (5mg) for the more severe headaches. The only problem is...I get a lot of headaches...but only 1-2 every other day now is severe (dec from 1-2 a day!!) Sometimes I don't know if the one I'm getting is severe until it is to late. Hard to explain... In general, I'm just in a lot of pain almost all the time..there are no symptom I get prior to a migraine...it just happens.
Also, thankfully the duration of the severe one are usually (thankfully) pretty short..only an hour or two.

So I will try it. Still taking Nortriptyline 25mg at night also. We'll see how this all works out. Took the first Topamax last night...no side effects just yet, sure they are coming.

I'll write back and let you know how it goes. Thanks again for your help and support.

Nate

Greene not sure if your still a frequent visitor on this site. Anywho I can relate entirely to your case, hit by a mortar explosion last year in Afghan. If you would We mail me and we can bounce back and forth symptom and tried meds and such stuff. This goes fir anyone who reads this post and wants to compare the symptoms of tbi. ]. look forward to hearing from you. Be safe.

I am 2 months post concussion and i have had constant head pressure since the accident. The crazy part is that I just had an MRI last week and since then I have been experiencing horrible throbbing headaches in addition to the pressure. Has anyone else experienced this?

I am also being stepped down from Nortriptyline and Amantadine so I'm not sure which could be the trigger. I do not tolerate medicine very well, but these headaches are not responding to Extra strength tylenol. Anyone else who is sensitive to medicines....what has worked for you?