A Release of Pain – Migraine Update

It’s kind of funny. As I sit here and type this, my head is actually kind of achy. For the past five days, I’ve had the most horrific migraine I’ve had in months… especially since starting the Topamax. So bad that I was wearing my sunglasses inside my darkened condo just to function enough to say hello to my husband, write my schoolwork notes down, and read my text book. It’s been awful.

Being a migraine sufferer is awful and isn’t something I’d ever wish even on my worst enemy. Ever.

I’ve been getting a lot of messages from folks asking how I have been since my surgery a few years back, and if I am still doing well so I thought I would catch up with everyone and let you all know how things are going on the migraine front. I know that I have been talking about them here and there and not really giving you the full story of how things are going with the chaos that is my head so 4pm on this Thursday afternoon is the perfect time to slack off at work and take an hour to catch all of you up on what’s going on right?

IΒ  miss you guys too, so I’m taking advantage of it. And if you are my boss reading this, I promise it’s not really 4pm on a Thursday. I made that up. πŸ™‚

So for those of you who don’t know the story, I’ve been suffering from some form of headache for most of my life. As a child it was headaches, and once I hit high school they got worse and it wasn’t until a car accident in college that we were able to label them: migraines. Years and years of medications and therapies and nothing worked until I finally broke down one day and in a mess of tears said I couldn’t handle it anymore. I was in my mid-20s and in so much pain that I could barely function, was forgetting simple things, having black outs, just not living my life at all. I finally got referred to a neurologist, and after another few years we were able to determine that surgery was an option. You can read about it here.Β 

This is my day before surgery blog post.

This is my post surgery blog entry.

That was 2013. My first big migraine post surgery was in 2014. That was when Dr. Doty, my neurologist, told me that the surgery wasn’t going to take away my migraines completely because I had a migraine condition but that it was going to take away some of them. Enough of them to make life easier, which it did. But since 2014 the migraines have slowly started to increase again.

The good thing is since the surgery I’ve been able to determine some of my triggers. I usually get a massive, uncontrollable one right around when my cycle hits (sorry, male readers) and it’s only been just this week that we’ve been able to clue into a medication treatment process that might be able to help that. (explains the 5 days of hell, huh?) Other triggers include lack of sleep and not eating enough, really bad storms when the barometric pressure drops, pressure against my head like when riding a roller coaster, sometimes muscle tension in my neck can even trigger one. There have been times when I’ve woken up with one for no reason whatsoever. So basically anything can trigger one because as Dr. Doty said, I have a migraine condition.

At the start of the year, I had a 7 day migraine that caused me to miss two days of work. I called her office and she called in an extended release triptan and a steroid pack that was able to nip that one in the bud rather quickly. But come February when a second one hit the same way, I realized pretty quickly that something serious had shifted in my brain chemistry or my body’s physiology that was causing the migraines to get bad again and scheduled an appointment quicker than our usual one. We discussed some long term preventative care and decided to go back on the Topamax, but with the extended release version called Trokendi.

Let’s go back to that really quick for those of you who don’t know that story. As you may have read here, the original dosage and strength of the Topamax had a vicious side effect that many people weren’t really aware of until almost too late: it exacerbated depression and suicidal thoughts. At the time I was on it, I was already taking an anti-depressant for my depression but I was on a full dose of Topamax (200mgs) and it was all at once (read:not extended release) and buried in the side effect warnings underneath the “makes you lose your appetite” and “you’ll get the dumb” warnings was the “hey, you might want to kill yourself” one. It’s not one of those things that many people want to talk about, and it’s not something the doctors really knew a lot about. Brian and I decided to go off of it cold turkey when we figured out it was the key to my emotional reactions and we had a very long discussion about it when I said I wanted to go back on it.

Since going back on it, with the lower dosage (75mgs) and the extended release pills, I’ve had less issues emotionally and it’s been good with helping keep the migraines away…with the exception of the one I’m dealing with right now. This one right here? This one is kicking my ass. No lie. But it happens when you go to Italy for 10 days with your family and screw up your medications while you are there, drink lots of wine that you shouldn’t be drinking, and just not really do the things you usually do in your normal routine.

I highly recommend the surgery I got. Occipital Nerve Decompression. I also highly recommend the Trokendi XR medication if you are a candidate for it. Just remember it’s a Category X drug which means you absolutely MUST be on a birth control pill while taking it. Both of these have helped me control my migraines and made my life a lot more pleasant to live. Do I wish that all of the migraines were gone completely? Absolutely. But I know that this migraine condition is just something I’m going to have to live with.

I’m lucky to have a husband who is understanding and willing to give me the space I need when I get a migraine, and I have parents who are understanding and give me the help I need when I have one. I have friends who get it when we have to cancel plans because of one, and know that I will reschedule when my head is better. They all know that I don’t want this, and they know that while I will try to push through the pain and participate regardless of how I feel that forcing me to just stay home is the best option for everyone even though I’ll bitch about it.

I’ve missed races, runs, workouts, and training events because of migraines. I’ve missed dates and important events. I’ve missed work and I’ve missed out on so much of my life. But it’s part of who I am. They aren’t going anywhere. But neither am I.

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18 thoughts on “A Release of Pain – Migraine Update

  1. Kimberly Hatting says:

    You are a trooper! I’ve been following your blog for awhile (2-3 years?) so I’m familiar with most of what you’ve been dealing with. I don’t know if I’ve ever had a real migraine (I’ve been told I’d KNOW if I had), but I know so many others who have them regularly. I am impressed with your attitude, though. You’ve accepted that it’s your reality and you’re doing the best you can to make things as comfortable as possible instead of denying the severity of it. Stay strong! You’re a great inspiration πŸ˜‰

    • jljohnson says:

      Awww. thank you Kimberly! It’s not always as positive, trust me. There are times where I pitch a fit and throw a temper tantrum. I just have to be realistic, you know? I’m hopeful for some kind of regime that will give me more good days than bad. πŸ™‚

  2. Rachel says:

    I can’t imagine the pain you must deal with. I get migraines on occasion and they’re awful. The longest mine has lasted is three days. Hang in there, lady.

  3. Wendy says:

    I”m so sorry that you still have to deal with this. I get occasional migraines and I know how awful they are. I can’t imagine having them all the time. My work partner has them almost daily. Ugh.

    • jljohnson says:

      Encourage her to find a neurologist! It literally saved my life. I didn’t know what I was going to do but I was really close to doing something drastic, I swear. If nothing else, Dr. Doty was able to help me find some meds that worked enough to lessen the pain enough to function. I highly recommend it!

    • jljohnson says:

      She is so lucky! Thank goodness she outgrew them. I found out that my mother had them when she was younger too, but they went away when she got pregnant. Not a reason to have kids, mind you, but the thought of doing a hormone treatment to see if that helps has crossed my mind.

  4. Mary says:

    Wow, I’m sorry that you have to deal with migraines on an ongoing basis, chronic pain is a big thing to deal with. I’m glad that you seem to have good care and have found some treatments that make your life easier. I hope that you can keep fine-tuning your treatment to cut down on the frequency and intensity of the migraines. The treatment for the hormonal aspect of the migraines sounds promising. Is it progesterone?

    • jljohnson says:

      Honestly, I’m not sure what the treatment is yet. I haven’t taken the time to go and look. She called the scripts into my pharmacy directly and I spent the rest of the weekend in migraine hell. Today is the first day I’ve felt relatively normal. It’s quite nice! I’ll keep you posted. πŸ™‚

  5. The Accidental Marathoner says:

    Wow, what perseverance! I’ve never had migraines (thank goodness), so I can’t exactly relate, but the thought I’ve dealing with such a chronic problem is overwhelming. I’m glad you’ve had at least some relief, and hopefully over time they will start to subside again.

  6. SuzLyfe says:

    I am so so sorry you suffer from what seem to be pretty frequent migraines. I also get migraines, and they just suck the life out of you. I am hoping that you find something that works to give you lasting relief!

  7. Amber Brinker says:

    I want to leave you amazing commentary telling how your struggles with migraines have made me get treatment for my own but I’m pretty sure I called you about it. So! instead I will say I miss and love you and you are a rock star.

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