The Monsters in My Head

Thank you for the welcome! I haven’t been on any of the headache forums for quite a while. I was one of the hosts on the old about.com forum quite a few years back. In a nutshell – I have suffered from migraine from the age of approximately 9 years old (I’m now 55).

Back “in the day” we weren’t so fortunate to have the variety of treatments available to us that we have now. I have been treated for my classic migraine with aura by a variety of practitioners including nurse practitioners, general practitioner, and a neurologist; been given a variety of treatments from sinus pills to narcotics. I was fortunate to participate in the tail end of the Imitrex clinical trials and found it to be a life changer for many years until developing throat swelling reactions to the pill form around 2000 – my old doctor put all triptans on my allergy list a couple years after that.

I’ve been on Topamax for the past 6 or 7 years with very good success at suppressing the pain component but have developed some less than pleasant side effects including short-term memory problems, aphasia, buzzing/tingling sensation in my feet and hands, hair thinning, and heartburn. I was without insurance for the past 4 years but fortunately was on a patient assistance program that covered the cost of the script; however, I was getting my health care from a community health center that didn’t give me any continuity of care – the providers changed frequently and were mostly nurse practitioners who didn’t have a lot of knowledge or experience in migraine treatment.

Thankfully due to my recent remarriage I now have insurance again and am able to go back to my regular physician (YAY!). I am gathering information to talk with him about possibly replacing the Topamax with another preventive medication. A trial earlier this year of weaning off the Topamax was not successful – I forgot how bad the monster in my head was, and was hit with an episode that knocked me for a loop for an entire weekend. So now we will look at which treatment has the least amount of side effect while still offering optimal control; I really do NOT want to suffer again with these monsters that have stolen so much of my life……

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

View Comments (22)
  • Bonnie Troop
    5 years ago

    The triptans don’t work for me so I take an ergot based suppository. Tried Cafergot tablets at first but they didn’t have any effect. I take 1/2 Migergot suppository at onset or any time and it works. Used to use Fiorcet and loved it but my husband and children told me I acted loopy when I was on it. I did not know this at all and it took me a while to actually listen to them. They also told me for a day or two afterward on the Fiorcet I was very depressed. As I was lost in the forest of my migraines it took a while to see this. Hopefully you are not experiencing this but take note of what those closest to you are saying about your reactions and after effects to medications. The ergot based suppositories come in brands such as Cafergot or Migergot and are covered by insurances I’ve been on. Good luck to you and all of us!

  • Debby M author
    5 years ago

    Thanks Bonnie!
    I haven’t tried ergot, will make a note to talk with my doctor about it! I act loopy with the migraine alone, so… **smile** Have to keep some humor about it all…
    Debby

  • Dori Fritzinger
    5 years ago

    Love article!!! My monster also like weather changes, hormone changes, blood sugar changes and sleep changes.

  • Debby M author
    5 years ago

    Hi Dori –
    My monster loves weather changes, and all those things too!! Fortunately have gone through menopause so the hormone component is gone. I had a head injury in 2006 from a motorcycle accident that morphed the a little too – they changed a little, and now I have cognitive deficits that mimic my aura. Fun, fun!!!!

  • Renee Kimball-Mach
    5 years ago

    Loved your article! I am also on Topamax and have been for 7 years now for my migraines. They have helped tremendously. I cannot take Triptans, either. I still get breakthroughs even with my (maxed-out) Topamax dosage I take each day, so I take Fioricet (and Fioricet with codeine) for the breakthroughs. I was diagnosed with “pregnancy onset migraines” when I was pregnant with my 2nd (and last) child. I went through the last 1/2 of pregnancy plagued with migraines every other day. I was given Tylenol and told to drink a Coke every day. Then in the last month, he started me on the Fioricet. The day she was born, I had a migraine so severe, I was vomiting and couldn’t function in labor/delivery, so he gave me Stadol IV, but of course, I was in a medicinal fog after that. Then the morphine…. so her whole birth was a fog. My OB told me that pregnancy onset migraines SOMETIMES don’t go away….even after the hormones subside postpartum. I am one of those examples. Those women (like me) just have to suffer with migraines the rest of their lives. The hormones never “went back into place” and continue to cause me migraines. I’ve been put on every medicine in the book since then, by several different Doctors and Specialists. WE always come back to the Topamax and Fioricet.

  • Debby M author
    5 years ago

    Actually, Fioricet is non-narcotic. My MD doesn’t like narcotics, I was previously using Vicodin or percocet when I first started seeing him, and he switched me to Fioricet which I was skeptical about until I used it the first time; and I was pleasantly surprised at how well it worked!! Sometimes we really do need an abortive, and OTC meds might as well be sugar pills…..

  • Nancy Harris Bonk moderator
    5 years ago

    Hi Renee,

    Have you seen this recent article by Dr. Marcus on how to treat menstrual migraines? It may have helpful information in it for you; http://migraine.com/blog/short-term-option-for-migraine-prevention-frova/.

    The problem with Fioricet and other opioid pain relievers is that they simply masks migraine pain, it doesn’t abort it. A big problem many people with migraine run into is when trying to relieve our pain we can unwittingly create another problem called medication overuse headache or moh. This can occur if we take migraine abortive medications and/or pain relievers, whether they are over-the-counter or prescription, more than two to three days a week. We have information on moh in this link; migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    Nancy

  • Debby M author
    5 years ago

    Oh wow! Caffeine causes migraine for me. My old doctor had put me on the Fioricet several years ago, I was pleasantly surprised at how well it worked! Have been using percocet for the last few years while I was going to the community health center; that works very well but my doctor is NOT a fan, so will be switching me back to Fioricet I am sure…. Can’t knock what works!!!

  • Nancy Harris Bonk moderator
    5 years ago

    Hey Debby

    Thanks for sharing your update with us. It’s nice to see you posting again.

    We hope to hear more from you!

    Nancy

  • Debby M author
    5 years ago

    Thanks Nancy – I will pop in when I am able. I know how important it is for us to share info and encourage each other. I am glad I found you guys…
    Debby

  • lindabriere
    5 years ago

    I have had migraines since at least 4 yrs old when I asked my Mom why I was always “sick on the first pretty day” Barometric triggers. I am almost 60. Since due to injuries, Facial nerve damage and genetics (cervical dystonia) I have had many prophylactics tried on me Blood pressure ones and Topomax also and because I have been blessed with medical plans that covered most everything imaginable. Drugs like Neurontin helped just for a few years. The increased dose required to be effective made me unable to work. I am now on Lyrica at night, but the dose is low 150 to 225 as a tamping down of the pains accumulated over the years. I also use Benadryl at night with cetirizine and guaifenesin which is actually used as a prophylactic for autoimmune disorders. For daytime I use Micardis and Zomig for the migraines that do break though. I am blessed to be able to use Botox but not just the eyebrow area but also the jaw line and on the occipital divot on the back of my skull and divots as they radiate from about the fingertip lengths from my hand placed over my ear. this is done at 2 to 3 x’s per year so then I can work fulltime. I do get soft signs still or silent or stomach migraines in the form of light sensitivity and the trots called IBS sometimes daily mostly AM but this can take a few minutes to a few hours? ps Accupuncture works but not with a tens unit that only increased pain. Chiropracters worked but NOT with an activator which caused a radiating pain and it took 2 to 3 times per week so neither were seen as cost effective., Best advice treat your symptoms separately if possible and never give up hope. I do work fulltime with FMLA for the IBS. God Bless!

  • Debby M author
    5 years ago

    Chiropractic adjustments help me a LOT – I agree though, not the kind that uses the “activator” – I have degenerative C1, C2, C3, and some lumbar that cause chronic pain. The neck spasms can trigger migraine, so keeping that all aligned is crucial…

  • Nancy Harris Bonk moderator
    5 years ago

    Thanks for sharing and your words of encouragement.

    Happy to hear you’ve found a plan that works for you!

    Nancy

  • pooh2you
    5 years ago

    I was on Topamax from Dec 2006 thro April 2013. My new neurologist took me off of it as soon as she heard that I had had a kidney stone in Feb 2012, apparently Topamax can cause kidney stones! Yay! She decreased me off Topamax and started me on Lamictol. It has taken a while to get up to the right dose – just like with the Topamax – but I think we are nearly there. Yeah, it has been hell since I switched, but I believe it’s going to be worth it. Best of luck to you! Just know there are other options!

  • Debby M author
    5 years ago

    Hi Pooh – My doctor prescribed Verapamil to replace the Topamax, and so far so good! Most of the side effect issues from Topamax have dissipated, most importantly the feet/hand tingling, hoping that the others will completely disappear as well after being off it for a while. Ouch on the kidney stones, my mother has had several bad bouts with them and I have seen what she went through. Good luck with the new medication and hope that you find a doseage that works for you – just don’t give up, there ARE other options out there, we just have to find the right fit for each of us…
    Debby

  • Angie Rhodes
    5 years ago

    I am new to this website and just started taking Topamax about 10 days ago. I am almost 39 and suffered with migraines since I was 14. Anyway suggestions, tips, anything anyone can share. I hate these demons that take control of my life.

  • Nancy Harris Bonk moderator
    5 years ago

    Hi Angie,

    Welcome to Migraine.com! Topamax is an antiseizure medication that is FDA approved to treat migraine. To read about Topamax and how it works you can read this link; http://migraine.com/migraine-treatment/topamax/how-well-topamax-works/.

    It’s important to start Topamax at a low dose and taper up slowly, and in a split daily dose. For example, week one would be taking 25mg at bedtime; week two 25mg in the morning and 25mg bedtime. Continue reading this dosing information; http://migraine.com/migraine-treatment/topamax/dosage/.

    I hope this helps, and we are here for support and information! Let us know what you need.
    Nancy

  • Angie Rhodes
    5 years ago

    I actually feel pretty good. Migraines will keep me down 2-4 days at a time and the only side effect I have really experienced so far is a little heart burn. I am going to write down these others people have mentioned though and if this doesn’t work, I will talk to my doctor about them. He is very good about letting me try different things. Thanks all for the helpful information.

  • Heather Bozik
    5 years ago

    hello angie im 39 and i been scared to take my topomax , question is how did u feel in the last ten days u have taken it ?

  • pamkerstner
    5 years ago

    I was on topomax for several months and had terrible memory loss. the headaches did go away for the most part but I had to stop taking otherwise I would have to quit my job. it was that bad good luck to you

  • Debby M author
    5 years ago

    Good luck with the Topamax – I am very grateful for the relief I did get with it over the last 6 or more years (can’t remember exactly when I started it) – not everyone has the same side effects, just work with your doctor and know there ARE other treatments out there if this one doesn’t work. Most importantly, make sure you have a doctor that listens to you, communicate, communicate, communicate!!!
    Debby

  • April Coots
    5 years ago

    I hope the Topamax works for you. I have been on it for about 6 years and it has worked well for me. I still have a migraine every now and then but nothing like I use to. Like the story above said I have tingling in my hands and feet sometimes because of the Topamax, it has gotten better over the years. I do notice memory loss and I have also lost a lot of weight. But the most important thing to remember is don’t forget to take it. I take mine twice a day and if I forget even one time then I get a headache. So good luck.

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