Migraine: Say "Know" to Drugs.

Too many times, my doctors have looked at the records and decided that they need to start from the beginning. Use the same medication(s) as the previous “healthcare professional”. Being a fairly intelligent man, having done YEARS of my own first hand research, I have had more experience with migraines than almost all of the doctors I have seen. The funny thing is that I have only now realized my own expertise with my particular situation and gained the courage to speak out.

When a doctor tries to implement a medication therapy that I know has been tried to no effect, I’m no longer shy. I tell ‘em, “Been there, done that, and I’m not gonna try it again”. There are too many times that the medicine’s side effects, are as bad as, or worse than the ailment. Too many times that I let a doctor tell me that I didn’t stick with it long enough, or that I didn’t reach a high enough dosage. With my collected records showing medicines, dosage, and side effects, I can now show proof that a previous treatment attempt was not worth trying again.

I guess my point is that I have to take control and supervision responsibilities for my own treatment. I am the only one who is truly concentrating on my medical condition and knows the day to day progress or lack thereof. I must continue to keep my daily journal during each treatment regimen, keep an up-to-date copy of all my medical files including tests and films and keep an up-to-date drug list with all the medications that have been attempted. Don’t just list the medications that have been tried, but keep track of the dosage and duration of each as well as the side effects experienced while taking them. This way I can show the doctor what I already know to be treatments that do not work. This will save both of us time and save me a lot of trouble!

If anyone has to start over with a new doctor, they should be prepared. Take your records, your imaging and your journal.

Tell your doctor what you KNOW.

 

Migraine: Are You On The Rebound?

Rebound! I’m not talking basketball or relationships. I’m talking headaches. I know that the consequences of using analgesics is the possible occurrence of medication overuse headache (MOH), but when one headache lasts for nearly a week, it is very difficult to go that long without taking something for the pain. It is very hard to break the cycle when you have chronic headache and the very medication you need can cause chronic headache.

I went years taking non-steroidal anti-inflammatory drugs (NSAIDs) like they were candy. I was on a constant roller coaster from one headache to another, till the pain was too great and I would require a trip to the emergency department. I finally learned and quit taking any over the counter pain medication. This alleviated the rebounds, but didn’t end my pain. Without the addition of rebound headaches it was much easier to pinpoint some of the triggers in my life.

I had to learn the hard way, to mix it up. Mix the different pain management techniques, so that mind and body do not become dependent on just one specific technique. I stir the pot, by using different things at different times. I encourage others to guard against rebound headaches by mixing up their pain management game plan. Basketball metaphor intended.

 

Migraine: Are You Wearing Your Sunglasses At Night?

There are not too many pictures of me without my shades in the last few years. It’s a common joke for friends and family to ponder whether or not, my future is that bright. I often wonder about that as well. Future or not, the simple fact is that I have a severe light sensitivity. Day or night, candle or headlight, have me wincing and turning away and cringing with the fear of the onslaught of another migraine.

Light sensitivity is a very common symptom of migraine sufferers and being light sensitive does not mean that I already have a headache or that it is coming on. Bright light is one of my triggers, but I know that the “triggers do not ‘cause’ the migraine. Instead, they are now thought to activate processes that cause migraine in people who are prone to the condition. For many people like me, light can be an enemy.

I have found the following ways to help prevent light from triggering a migraine. I try to wear a dark colored hat with a brim when I go outside in the sunlight. The darker the color, the more light is absorbed by the hat before it reaches my eyes. This is the same philosophy as athletes using black under their eyes to help them see.

I put my sun visor down and adjust the driver side mirror slightly to the left, when driving at night. This allows me to position my eyes to just focus below oncoming headlights. I can keep my eyes on the road without being blinded. Adjusting the driver side mirror allows me to prevent headlights behind me from sneaking up on me, or constantly blinding me (especially when THAT car stays in my so-called blind spot and will not pass me). Adjusting the rear view mirror to the night-time setting (usually there is a lever to flip it up) also helps.

And, I wear my sunglasses at night, and day. Not when I’m driving (well, sometimes I do). When I am in a restaurant, bible class at church, the mall, or out shopping I typically wear my shades. I don’t care if others think I am stupid, or if they think I think, I’m too cool. It’s better than the possible consequences. Walmart is the worst place for potential triggers, as the lighting is typically fluorescent and too bright (Not to mention the stress and the frequency that I walk into obtrusive odors).

If you have another “light” tip, please share.

 

Migraine: It's Give and Take

Volleyball game 2 did not go as well as had wished. Not because we lost, we didn't, but because I am having a very difficult time dealing with the side effects of my new migraine regime. I am taking 150mg of Mexelitine four times a day. This is essentially lidocain in pill form.

When I left the migraine clinic at the Jefferson Hospital in January, the doctor removed my PIK line that had steadily dripped lidocaine into my veins for a week, and put me on mexiletine caplets.

I know it is working because I have been mostly headache free for 16 out the last 45 days!

Most of the headaches I have experienced over the last two and a half months have been less severe. I have had a handful of what I consider gran mal attacks, but have been able to use the DHE shots to lessen the pain.

Now here's the rub. My headaches are getting better. While my fine motor skills are getting worse every day. Especially on my right side, supposedly my strong side. I realized a few days ago that my fine block architectural writing is non-existent. I can hardly sign my name. My right hand has an almost constant tremor. And you may have already guessed what this has meant to my volleyball skills.

We have played two official matches, where I have had the opportunity if not the ability to serve the ball. I have had pride in a very strong jump serve, for many years. Not any more. I have not gotten a single serve over the net. Depressing it is. I have had a few spikes, but not with my usuall vim and vigor. My digs, sets and bumps have not been affected as of yet, but it may be only a matter of time.

There are two positive things that come out of this situation. The first is that I am having fewer migraines. The second is that my youngest daughter (Team Hero with 10 aces) came up to me throughout the game and even after and told me how much she enjoyed seeing me out playing ball rather than locked in the migraine vault. A precious memory I hope I never forget.

It's Not Funny, But I Have to laugh?

Migraine's are not funny. But, laughter is good medicine. So, are these people actually healthier because they force themselves to laugh?

It seems to silly to think that forced laughter may actually make us healthier, but how many times have I faked a laugh only to begin laughing for real... A few, I'm sure.

Has anyone really died from laughing too much? I do know you can laugh so hard it hurts. But, at the same time it feels good to laugh that hard. I recently, was read a story that put me on the floor gasping for breath, and I might have suffocated if my friend had not stopped when he did.

But, I didn't get a migraine.

Is there a joke in here somewhere? I'm not feeling very punny today. (:{) ... Oooh, that was bad.

Migraine: Hit Me With Your Best Shot!

I was thinking of naming this post “Stick me with you best shot”, but I decided to “stick” with the original Pat Benatar song title. I am sitting in my hospital room, suddenly asking myself “What is it you wanted to say”? I have a “point”, but I’m not sure how I want to make it. So, I’ll just fire away...

I wanted to travel a different path than what normal or abnormal, I don’t know, would think about the use of the word “shot”. I like the context of the lyrics of this song, even though it has anti-love overtones. I like to look at another way. For me this 1980’s hit is in the same stratus sphere with the Theme From Rocky.

I recognize that my opponent is tough, and there may be billion reasons why I shouldn’t or couldn’t win the fight. But I put myself out there and see what happens. I may not have won the first 27 rounds (the number of years that I have been plagued by migraines), but I am not going to give up. I am taking the fight to the enemy. I just spent six and a half days in the headache ward at Jefferson University Methodist Hospital in Philadelphia, PA.

I live in Southwest Virginia, and there just aren’t any really migraine knowledgeable medical practitioners any where near me. No offense to anyone I may have overlooked. Over the years, I have been to Duke University, UVA Medical Center, The Medical College of Virginia, and all without resolution. I took a bold step and reached out to Dr. Silberstein, with JU, as he either is or was the president of the American Headache Association. After a few months of out-patient care, we jointly decided to give in-patient care whirl.

I returned (not quite home, as I am staying with very good friends just north of Baltimore) yesterday, having been without that Gorilla sitting on my back for almost 3 days. To me, this is near the miraculous, since I haven’t had three good days with no pain in almost a year. Much less three in a row!

I have hope today, that I haven’t had in a really long time. I’m not blind to the possibility of having a headache any moment, but I not living in fear of that moment. I know that I am strong enough to take the blows and to continue to come out swinging. Well, I’m a real tough cookie myself.

...You come on with a come on, you dont fight fair
But thats o.k., see if I care!
Knock me down, its all in vain
Ill get right back on my feet again!

Come on hit me with your best shot!

P.S. I will spend some more time real soon, documenting my treatment at the hospital. I want to give a shout out to all the Doctors, patients, and especially the men and women nurses and assistants working the floor. I really appreciate the care you gave to me.

Migraine: Find the Right Doctor

I Live in Southwest Virginia. There are a lot of neurologists in my area and ... there are no headache or pain clinics. Most of the neurologists in my area feel that they have all the tools they need to treat any migraine patient. Because my insurance company believes that it is better to exhaust all local resources no matter the overall cost than to go out of service to a healthcare provider that specializes in the type of treatment you need, I have seen about 80% of the neurologists in my area. This has cost me and my insurance company no small sum.

In my experience, insurance companies can make it difficult to find a doctor with the experience and tools needed to treat your particular type of headaches. Many neurologists just haven’t had the opportunity to treat a wide variety of headache sufferers. Because a lot of the causes are still unknown, there are too many different possibilities and treatment options are changing constantly.

I found some lists of pain clinics in the United States. This is probably not exhaustive, but is a start;

List of Pain Clinics - United States A - Ca

List of Pain Clinics - United States Co - FL

List of Pain Clinics - United States G - Io

List of Pain Clinics - United States K - M

List of Pain Clinics - United States Mi - Ne

List of Pain Clinics - United States Ne - Ok

List of Pain Clinics - United States Or - Tex

List of Pain Clinics - United States V - Wy

I did some research before picking a neurologist or other doctor to trust with my care (not using the above lists). That doctor didn’t work out, but he was able to put me in touch with another, and she put me in touch with the one that has given me the most hope in over 10 years. I took all of my records, my films, my drug and treatment list, everything my wife and I have collected since 1985. We sat down and he listened. For the first time in a long time, I believe that I have found the right doctor.

If the doctor will not listen to me, then I haven’t found the right doctor.

Migraine: Laughter is the Best Medicine? Well, Almost.

Well it’s official. I am a blogger. This is my second post to this blog. Just had to pinch myself (I actually did that, but only to see if it took my mind off my pain for a few minutes). What is the emoticon for a feeble attempt at humor?

õ.O

This one works for me. I just found it on Wikipedia. Just looking at these put a smile on my face.

I try as hard as I can to keep my sense of humor. It’s too easy to let the pain keep me in a funk. Even on good days find me walking along with a chip on my shoulder, not knowing when the pain is going to strike me down again.

Wait, I think this one is better for a feeble attempt ...

:-|

It’s important for several reasons, for me to push through the “bubble of pain” that has engulfed my life and force myself to smile. It’s important for my relationships with family and friends. Especially for my family. Living with a cave man (not belittling my own looks ~ just where I spend the majority of my time) is not a party for them. It really puts a strain on everyone when I wear my pain on my sleeve all the time. I see it affect each person in my family and their interactions with each other. Setting a positive example for them is one of the most important things in my life.

It’s important to my sanity to find humor and enjoyment somewhere in my life. By putting a smile on my face, even if I feel like I am going through the motions, eventually makes me feel better. By doing the things that I would do if I didn’t feel like a depressed ogre, I am actually doing something to help myself get better. I have discussed this phenomenon with my counselor and he told me that this is a documented therapy. My behavior changes can help to modify brain chemistry and ease my depression.

It’s important to remember that I am not the only person in my life being plagued by migraine headaches. The people around me are suffering as well. They may not have a headache, but their pain is just as real, if not as physical. Trying my best to be myself (the real me) is one way to help myself and my family.

I found this video about dealing with family members during a migraine, and other good videos at the web site for Zomig.