Hive Health Media

Living with Migraines

I have been living with migraines for the last forty years. They started in my teens and I have spent many pretty horrific days literally writhing in pain in my lifetime. The doctors are pretty much in the dark still about what causes migraines outside of a few theories they have come up with.

Different kinds of foods, the weather, stress, medications, sleeping too much, not sleeping enough, hormones gone wild and so on.

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When I was a teen and first went to the doctor about my headaches they did a few tests which seem barbaric compared to the tests they have today. One test they gave me was a brain wave test of some sort which they inserted needles under the skin on my scalp to perform. Can I just say ouch? Not a fun test.

The other one was not better and even more painful. They shot dye into my bloodstream and x-rayed my brain. They put my head into what looked like a car crusher to hold it still so that they could watch the dye go through. When the dye reached my brain the burning was so intense that the tears literally squirted out of my eyes while I lie there with my head in a vice. Sounds almost like a torture chamber doesn’t it?

The first thing they told me was that they thought I had some rare form of stomach epilepsy because I was getting severely nauseated and then passing out. I do not know to this day what in the world they were talking about but I was a teenager.

The doctors began by giving me medicines like Motrin, Naproxen which helped with inflammation and tried many beta-blockers. Nothing helped much and even the pain medications they gave me generally just made me sicker. Generally I would end up in the emergency room several times a year for a migraine that lasted more than two days accompanied by vomiting which intensified everything.

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Migraines are a bit of a vicious circle. When you get one you need to get quiet, lay down, and turn off all the lights. If you take pain pills and sleep they can intensify because of the pain pills and the extra sleep but if you don’t lie down and take a pain pill you can not even walk around because of the pain. There is also the nausea that kicks in from the pain I presume. The pain pills do not take them away but they ease the pain, until your body decides enough is enough and the headaches increase because of the pills. You think if you eat something it will help but often times you are not sure what to eat. In my case I knew chocolate was definitely out, along with coffee, sometimes onions too and on and on.

The doctors were giving me caffeine pills to help but telling me to stay away from caffeine. Ice packs helped me but sometimes made it worse, I couldn’t even think about heating pads which some people said may help! Then the ice pack ended up burning my face because it was in one place too long as I only got headaches on the right side around my eye and temple area. They usually branched out to other places if I had them too long because I was staying in the same position too long or I was super stressed out because I was so sick. I could go on and on but you get the picture. What a nightmare.

To top all of this off you had a limited selections of neurologists you could talk to. Most knew nothing whatsoever about migraines because they did not study migraines, they only knew neurology which covered a vast amount of territory but usually left out headaches unless you had a brain tumor. Some doctors did not want to fool around with migraine sufferers because they did not know what caused them and quite frankly many doctors had never experienced them and thought that what we had was just a headache and we were cry babies that only wanted drugs.

I personally experienced a doctor that was convinced I was addicted to pain pills and refused to give me any and at that time I was on an HMO and he was the only one in my network back then. Ugh. I am as far removed from an addict of pain pills as you can get. I hate them, most make me sick. I just wanted the headaches to go away.

Not only did I suffer with doctors who were unkind but I spent my life dealing with bosses that did not have a clue what a migraine was. I worked for a large corporation and frequently had new managers or supervisors and they all responded differently. My favorites were the ones that would look at me with a sneer and say, “You have a headache and you need to go home?” At this particular time in my life I attribute most of the migraines to hormones since they seemed to show up about once a month about that same time.

I have often wished in my struggle with people understanding migraines that I could simply touch them so that they could get a few moments of the pain I was feeling. Not out of meanness but just so that they would not judge so harshly what they do not understand. I do know that there are people running around out there saying they have migraines when they have a headache who have absolutely no idea what it is to have a migraine. So they do not help the case of a real migraine sufferer much to the unbelievers.

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Well, I finally found a neurologist that studied migraines and had all kinds of different things to try. They even did a psychological study on you when you went in to see if you needed anti-depressants or what not. They also offered bio-feedback which was a way they could monitor how you reacted to different situations that may trigger stress related migraines or something like that. I didn’t bio-feedback too well so they quit that one. Another thing they tried was Botox injections in my forehead which caused some pain and no results. I tried all the preventative medications they could come up with and generally ended up on their table getting a pain and anti-nausea injection before it was all done. Suffering and shots seemed to be the answer.

The first time I ever experienced real relief was in the 90’s when the doctor told me about Imitrex shots. They were not covered by insurance and they were like $40 a piece if my memory serves. I remember trying to scrape the money together because I had two young children at the time and not a lot of money. I had to try something. Well, I am not a shot person but they came in the push button form and you did not see the needle if you didn’t want to. For the first thirty plus minutes the nausea was awful and my whole body burned like fire. Then the headache was gone with a left over burning sensation and all over weakness. But I was absolutely thrilled the headache was gone! I would much rather lie in the bed weak with a burning sensation than with all that awful pain.

It is funny;and I use the term funny loosely, what a person will do to get rid of pain. I could take the nausea over the pain in my head because I knew it was short term. It took what seemed like forever for the insurance to acknowledge that people needed this medication and to cover it. It was a step up in medication but not so much help financially.

The greatest help in my life to date for migraines has been the Imitrex pills which I was given access to a while later. They did not make me nearly as nauseated but did take a little longer to work. But I knew they were going to work if I would just take it easy for about thirty minutes or so and I decided to trade in my shots for the pills. The best day was when insurance decided it was necessary, which in the beginning had to be done by letters from your doctor giving them your diagnosis and expressing your great need. It had to be a specialist too. A lot of work went into getting those pills covered by insurance!

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And then finally in the last few years they have come out with generic sumatriptan which is even more affordable! I at last can manage my headaches but it comes with much practice. There are still times that I miss the signs or take a little too long to take the medicine and end up suffering more than I should. I have tried a few of the other new medicines they have for migraines but still I stick with this one for now because I know it works for me the majority of the time. I hear there is something new out there on the horizon but I am cautious about switching from tried and true.

If you have what you think may be migraines you owe it to yourself to go to a neurologist but keep in mind while you are looking that they need to have done a little study in this area or they may sneer at you even today. There are so many different kinds of migraines and it is important to diagnose them correctly and get on the right medication for you. I have met people who say sumatriptan does nothing for them.

So it may not work for you but I am so thankful it does work for me. Keep trying until you find the medication that works best for you. There is no reason to suffer for two or three days and end up in the emergency room any longer now that there are viable treatments in play today.

This guest post is contributed by Debra Johnson, blogger and editor www.liveinnanny.com She welcomes your comments at her email Id: - jdebra84 @ gmail.com.

4 Comments

  1. crvjim

    January 21, 2013 at 4:16 am

    I agree with Ken,this is my story also.Woke up this morning with one just coming on the temp has dropped from +5C to -14C Though my doctor says weather is not the trigger.so instead of lying in bed wanting to die took my Imitrex pill and in 30 minutes or less life can go on.

    • Douglas Robb

      January 21, 2013 at 5:38 am

      Hey Jim – I get a migraine (or what I think is a migraine) once or twice a year and it sucks. I can’t imagine having to deal with them on a regular basis. God bless the scientists who came up with Imitrex :)

  2. sheena

    January 2, 2013 at 3:47 pm

    thanks for the article. i also suffer from migraines and have much sympathy for your experience & others out there.

    • Ken

      January 19, 2013 at 9:11 pm

      Wow! As I read this I thought, “This is my story.” I experienced every detail, medicine, and feeling that Debra shared. The old days—the days before Imitrex—were awful. So painful. Life has been completely different and better since Imitrex was introduced. Those days in the emergency room seem like they happened to someone else, fortunately. If you get migraines—real migraines with incredibly intense one-sided pain, loss of vision, slurred speech and vomiting, and you haven’t tried Imitrex or the other similar drugs, do so now. Those drugs allow us to live a life that is not determined by migraines. As Debra stated, they are available in generic form now.. Thanks, Debra for a great report.

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