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My Adventures with Chronic Migraines

I think my first experience with migraine came as a result of playing certain video games for too long a stretch. While the migraine was horrible, it didn’t happen often at all. They really started to bother me about 6-8 months before I retired from the military.

It started as an annoying little headache that would not go away. Seriously, this headache lasted 2-3 months before I saught treatment for it. I was fortunate enough to be stationed someplace that had a headache specialist on staff and was blessed to be sent to him right off the bat. What ensued was several years of trying to get these suckers under control. I’ve been on many meds with sometimes initial good results that were unfortunately short lived.

I’ve been on amitriptyline, nortriptyline, gabapentin, depakote, topamax, propranolol LA, ambien cr, regular ambien, methocarbamol, imitrex tablet and injection, the nasal spray, relpax, fiorinal, naproxen with imitrex…I think thats all of them in the last 6 years.

The propranolol LA (Inderal LA) started out with pretty good results but eventually we reached a dose to high and I had some adverse effects. (low heart rate/unable to stay awake)

Topamax, which I had told myself I would wait out the side effects to determine if it helped the headaches. It worked decently, and I was able to get through the side effects except the one that eventually messed with my eyes. My eyes would hemorrage. One second they would be fine, the next it would look like I had a bad case of nasty pink eye. So, I can not use topamax or any of the anti-seizure meds as they all mess with my eyes.

Amitriptyline caused the hangover effect in the morning and I had a hard time getting up and staying up.

The abortives worked so-so. Sometimes yes, most times no.

My migraines, when at their worst would have me throwing up and unable to really focus or concentrate. I used to still go into work sometimes having to pull over and throw up on the side of the road. Finally realized how dangerous that was and told them if I was throwing up there was no way I could drive into work.

My current treatment is Propranolol LA (lower dose), Nortriptyline, amitriptyline (for sleep) and my abortive is fiorinal. I find that when I feel a headache coming on, if I take some fiorinal and lay down for a while, I get the best results. I had to retrain myself to take the medication earlier instead of telling myself it (migraine) wouldn’t be that bad.

Still trying to find the right meds to help with my sleep as the lack of sleep contributes to my migraines. I am also very scent sensitive. There are certain scents that will trigger a migraine so fast I almost can’t make it to the restroom in time. Sadly, some people like to bathe in their cologne and don’t think of how it can affect others.

At there worst, I have daily headaches with really bad ones (8-10 on the scale and vomiting) 8 to 10 times a month and missing work sometimes 2 days weekly.

I quit working in April. The migraines are under better control. I think it may be more from the lack of work related stress, but I am still tweeking things with my Dr. If not working keeps my migraines down, I’m all for it, but I know not everyone has that option. I refuse to give in to this disease though and I will live my life. I know there are many that don’t understand how horrible it is to live with this and I know they have no clue the strength it takes to do things sometimes so I don’t miss out on certain things because of them.

Hopefully science will continue to improve on the therapy’s available to us and starts to tailor things that are migraine specific and not an Oh by the way, this seems to help migraines too.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Jodi Skinner
    7 years ago

    I just wanted to comment on something to help you get some sleep. I use a med called temazapam or “restoril” this works every time I have insomnia, which then saves me sometimes from the “lack of sleep” migraines.

  • Sara Borders
    7 years ago

    As I read your story, I kept nodding my head in agreement and understanding. I have been a controlled migraine sufferer since 9, but it was only last spring that they took a turn for the worse. I’ve been out of work for a year, diagnosed with chronic migraine and unable to find preventatives, abortives, or even rescues to help. I take comfort in knowing there are others just like me, and wish us both better days.

  • Pat Lee
    7 years ago

    Have you tried using supplements, such as magnesium, CoQ10, butterbur, and/or riboflavin? I had very frequent migraines (15 or more per month) for a long time, but thanks especially to CoQ10 and butterbur extract, I have few migraines now. A good article about use of supplements, as well as medication, to prevent migraine can be found here: http://migraine.com/migraine-treatment/natural-remedies/.

  • Janice Worden Lamb Clemens
    7 years ago

    I too have the chronic daily migraine, but quitting work is not an option. I do have a great boss who is also my dootor, but we cannot come up with a combination of meds that has worked to get rid of them, yet. My doctor thinks a lot of my problem comes from the arthritis in my neck00 ( I am only 48, but I also suffer from Rheumatoid arthritis), and would like me to try pain management for injections in my neck as I have tried so many other options already. The only drawback is that it is expensive. I have insurance but it’s $45 every visit and my husband is not working right now due to chemo treatment so things are tight. Maybe once he is back to wok, then I can try it but it’s also awful close to my brain so I am very leery of this, but I would go for a consult just to see what they can do for me.Mind you, I do not let the migraines stop my life for the most part. I just keep on going. I do believe stress from work is my biggest factor. but no one else sees it that way, or wants to see it that way.As the office manager/nurse in my office I get everything dumped on me and more and more every day. But my doc’s don’t see that, or how short staffed we are and that I have to pick up the slack as we are so short staffed. I am burnt out and no one but my husband can see that. oh well , such is life.I just keep on going.

  • Janice Worden Lamb Clemens
    7 years ago

    thank you..I too am fortunate to have the support of my wonderful husband. I thought about chiropractor which had been suggested at one time by my pcp but none of this is covered by my insurance so I am trting the massage first then we will see if it helps. I was on steroids for years with no relief, and refuse to go back on them…they cause so many other problems . Thank you for you suggestions.

  • Shani Baldauf
    7 years ago

    I’ve been a fighter of migraines for well over 25 years. I have been following the many posts and I too have tried the vast seemingly endless quest for the ” right” combination of meds and/supplements, doctors, etc. It is unusual for me to post anything but felt compelled after hearing your frustration. At almost 41, I very recently got to the point of utter frustration and so tired of being in pain and taking the meds that weren’t/aren’t working. I have re-evaluated and in short (with the support of my dear husband) decided that something HAD to change. I can’t tell you what to do. I do want to share I have had pain management injections(botox, trigger points, floroscope guided blocks, epidulals,etc.) the steriods raised hell in my body and that was a price I was willing to pay then for relief. But it’s 6years later and I still have migraines and I swear I’m still getting that crap out of my system.
    So, currently, I am weaning off some of my meds (under drs care) that I think aren’t doing anything but making me more foggy. I got to the point of “what haven’t I tried?” With some hope and a different direction I put my faith in a wonderful massage therapist who is well trained in many areas but I think she is a healer for the whole body. She got me in touch with a chiropractor (another place I didn’t think I’d ever find myself), This chiropractor is trained in Directional Non-Force Technique. I had no idea what that would mean and again decided I needed something different. (You can ck online, but apparently they are few and far between.) I have a majority of migraines in the occipital lobe region, ,back of the neck and into the top trap muscles of my back and years of history training my body in coping with it(unhealthy). With this new approach it’s unwinding those areas, getting rid of the build up of poor fixes that weren’t working and have begun the slow process of seeing just what is going on with my body daily and addressing it as it comes. That is the plan for today. I ‘m still getting migraines. They are less frequent. They are less intense. I can focus on moving forward. I know there are going to be days I will still cry and be frustrated, but I’m hoping by tuning in more on my overall health and taking charge of it for me, it’s is what’s going to work for me.
    And gratitude. I am thankful for the days with less pain and fewer or a day free from a migraine.
    I wish you the best in your journey.

  • Janice Worden Lamb Clemens
    7 years ago

    thanks Mom…I needed that, especially after the week I have been having and it;s only wednesday…Love and miss you too!!!

  • Lee Worden
    7 years ago

    Sounds like you need a hug today. Hug Hug Hug There I did it. (I hurt like a toothache today , Maybe because it is only 20 degrees here) Love you and miss you

  • Heidi Annau
    7 years ago

    That is my life. I don’t have the option to quit my job. My boss is the best boss in the world and understands what I face. Thank god I have a great Doctor, too. but still unable to control them. 2-3 times a week. So depressing. I am on anti-depressants, naturally. topimax, etc.
    When it gets too bad, I go to the doctor and get a pain shot. this is happening more and more…

  • Stefane Digianno
    7 years ago

    Jay Pee it’s awesome that you are understanding and supportive.It’s hard for most to understand what it’s like dealing with migraines and all that comes with it.

  • Jay Pee
    7 years ago

    Heidi I feel for you my wife is a sufferer and I know it`s horrible

  • Steve Sorensen
    7 years ago

    I hope you get it figured out…chronic pain can be very difficult

  • Jessica Irving
    7 years ago

    Two big thumbs down to chronic migraines. I’m sorry Heidi… stay focued on the positives

  • Susan Ferguson
    7 years ago

    I liked the stories about Migraines. Because I live with them too.

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