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.

 

Know Your Medications

As a chronic illness sufferer, I have several different doctors. One for this, one for that, one for something else, etc. Each one of my doctors asks me on a regular basis, what medications I am taking and for what I am taking them. I have learned that each time I am prescribed a new dosage or new medication, I ask what for?

There is no one person who is keeping up with my medications as closely as I am. I know this, because each doctor asks about my prescriptions. They don't 'always' get the information from each other.  Actually, my healthcare system is just getting practitioner offices linked into the network, so that they can look at test results on the computer. But, I still ask my doctors about any reactions to or between medications

We are the one who has supervision responsibilities for our medications. We are the only people concentrating on our medicines and the only ones who know the reactions on a daily basis.  We must keep an up-to-date drug list with all the medications that we are taking and be able to tell doctors about any of the side effects that we may be experiencing.

When filling out forms for doctors, don’t just list the medications that have been tried;

•  Also list the dosage and duration of each as well as the side effects experienced while taking them.
•  Offer an updated medication list to your doctors on a routine basis. And don't forget to ask what a medication is used for, and any possible side effects.

•  Go online to research each medication's purpose and possible side effects. Keep track of any side effects and report them to your doctors immediately.

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Related Articles

• Migraine: Say Know To Drugs (againstthegraine.blogspot.com)
• Migraine: Are You On The Rebound? (againstthegraine.blogspot.com)

Puppy Noses

Well, I am back in the saddle again. I've had a rough few weeks riding out a pretty bad migraine storm, that I am pretty sure deserved it's own 'Hurricane Name'.

I finally went last Thursday and had my FPP give me a shot of Demerol. It was nice to get away from the two weeks of excruciating pain, and being 'slightly' loopy didn't hurt any either. I am now on a course of prednisone (6-3-1) where I take 6 tablets for three days, then 3 for three days, etc.

 My family really enjoys being around me after I have had a Demerol shot, as it makes me REALLY loopy for six to twelve hours. I have a tendency to sit on the couch in a daze and suddenly start laughing at nothing at all. The most famous of which is the time I laughed uncontrollably for about 30 minutes, before I could catch my breath enough to share the wonderful insight I had found in my stupor.  When they could finally get me to speak, I simply said, "Puppy Noses". And the legend lives on.   :?)    ~(my big nosed smiley face)

It's so wonderful that the misfortunes of others can cause such great happiness in others (joking). I don't really see my family as reaping any real benefit from my misfortune.  I am not around to do much during a storm of migraines, and I am not usually able to do much when I'm temporarily sitting in the eye of the storm. You know that the winds of change have to hit you on the other side.

The prednisone usually gives me a couple of really good days or even weeks that are migraine free.  I hope to use some of this God given time to make up for lost time working on the house, catching up on my blogging and reaching out to my twitter friends. (You know who you are.)

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Just Call Me Droopy

I'm once again, sitting at the keyboard, while doing one of my best Quasimodo impersonations or even the famous Droopy created by Tex Avery in 1943 (NO, I'm not that old).
Left eye swollen shut and shunning the light.  Left side of my face drooping further than that dog droopy in the old cartoons. Right side of my body, arm and leg feel week and don't do exactly what the brain orders.

If you can imagine asking me, "How are you", then you would get the patented "Droopy" voice (If you want to see and hear the Droopy of old, click here). I'm trying to keep on going, but sooner or later, I'm gonna crash. It's been four days straight with no let up. So, I called the doctor this morning and I'm waiting for my 11:30 a.m. appointment, so that I can get a shot of demerol. That will knock me out for another day or two, and hopefully I'll have kicked the migraine by the time I wake.  I'll see you in a few days.

-- Andy

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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.

Migraine: On My Nerves

It is so frustrating that the primary knowledge about migraines is so vague and obtuse. Most the treatments that I have heard of, are essentially treating the inflammation of the blood vessels, or nerves. Treating the symptoms not the cause. That's why I posted my previous article about pressure and temperature (see Migraine: Under Pressure not Temperature). There has to be an underlying cause for the inflammation and I am wondering if my own worst trigger, barometric pressure, could provide a key to my own headaches.

--Andy

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.