Woman falling down into large pit while medications fall around her

Down the Rabbit Hole of Preventatives

When most people are diagnosed with chronic migraines, their doctor will seek out preventative medications to try in an effort to reduce the frequency of the migraine occurrences. There are a lot of medications that are used for migraine prevention. Unfortunately, they are pretty much all off label uses of other medications such as antidepressants or antiseizure medications.

Countless preventatives

I am going on ten years of chronic daily migraines. Like most chronic migraine patients, I have tried more migraine preventative medications than I can honestly count or remember off hand. I have a document that I keep updated with all the medications that I have tried. This helps me inform doctors of what I have tried so they do not have to list off stuff in order for me to remember if I have tried that medication or not.

Being forced off Botox

After years of trying medication after medication and not having any lasting positive result from all of the different medications, we gave up on using preventative medications. The only thing the doctor I was seeing could suggest was to find a doctor that was able to preform Botox injections for migraines. At the time, there were not many doctors in our area who performed Botox. This resulted in me finding a doctor to perform the Botox injections that I needed but that I did not personally like very much.

Despite not personally liking her much, I kept up with the Botox injections until this year when I had to switch to my husband’s insurance. His insurance is just completely denying the Botox regardless of how much proof we submitted to them. Unfortunately, after months and months it seems like they are not going to change their mind about covering the Botox.

Back again

So I am back to trying the preventative pills once again. One has had no effect for me and another has actually made the daily migraines worse instead of better. This to me is the nightmare of going down this rabbit hole of migraine preventatives. These preventatives have a range of side effects than can really mess with you and this can definitely add to the issues that individuals with chronic migraine already have to deal with on a daily basis. All we can really hope for is that the insurance companies will decide to cover the recently approved CGRP treatment for us chronic migraine suffers; without insurance coverage it looks to cost roughly $600-700 a month.

Insurance companies

Unfortunately, the insurance companies inadvertently complicate treatment options by restricting what treatments and or medications they will cover for seemingly arbitrary reasons. It does not seem to matter that a given medication or treatment may have a proven history of success. In this sense, the rabbit hole simply runs deeper and deeper because insurance companies do not want to pay for unnecessary emergency room visits but then also don’t want to cover medications that could potentially prevent the emergency room visits to start with.

What are your thoughts? Do any of you struggle with preventive medications that don’t seem to prevent anything?

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 (6)
  • Dn2292
    2 days ago

    I am in same boat, Aimovig did help for a very short time and then failed to offer me any relief. Just took last dose 2 weeks ago. Hoping to switch CGRP medications, doc told me yesterday need wait several months in between challenging to ajvoy or other CGRP?? I will be researching in coming days to make my own decision about timeline I guess.

    This year is my 20th anniv of me being “Sick”.

    I keep medication list on a hard drive that is online so I can access at anytime or medical location I may be at from my phone or tablet. Also can alter said list from anywhere with ease.

    With chronic severe 24/7 migraines I basically live in a dark room unless leaving to go to a doc appointment. Must be positive
    “Tmrw will be a better day” helps 🙂 also I am very fortunate to have a wife that is supportive

  • DinaMay
    2 days ago

    I agree, trying a long list of meds is a royal pain. But the alternative isn’t any better. The prospect of a grim future of never ending migraine pushes me to keep trying something new. But even when something seems to help, I know that it can all fall apart without notice. Almost every thing I’ve tried has helped, at least somewhat, for awhile. And then it doesn’t anymore. So the search begins again.

    But feeling bad about how bad I feel doesn’t make anything better. As they say, “Life’s a bitch…and then you die.” So, while I’m not yet dead, my goal is to have a good time. My rule: Do what you enjoy, when you can, for as long as you can. Then when you can’t do that anymore, search out something new to enjoy. Now my mental list grows longer and longer with joyful things. My mental change of focus hasn’t gotten rid of migraines but it has made my life better even so.

  • u3hqte
    3 days ago

    I have had chronic daily headache for around 10 years and have been on countless preventives, including Botox, none of which worked well for me. Five months ago I started Aimovig (140 mg injection) and am so so happy to report that it’s working! I still avoid my known migraine triggers (heat, noise, sunlight, smells, aerobic exercise) but will soon speak with my doctor about getting off some of the preventives I’m currently taking. With help from my doctor, my insurance has approved Aimovig but it’s still a tier 4 drug which means it will cost over $200 every month. I’m lucky that I can fit that into my budget. There is financial help to those who can qualify. I encourage anyone out there with chronic migraine to try the new CGRP drugs.

  • Mike Perdue
    3 days ago

    I have the same issues of being a guinea pig for preventive medications. Recently I have tried Aimovig and Ajovy and both had little if any results. Actually looking at my migraine diary and the Ajovy is less affective than the Aimovig. I had better results with Botox so I may suggest Botox and Aimovig along with the other maintenance medications I am on. Still have hope something will eventually work

  • Tamara
    3 days ago

    I have tried over 15 preventatives plus combinations. Nothing has worked well, still completely disabled from the almost daily migraines. Tizanidine has gave a bit of improvement from daily muscle pain as I figured out when I stopped, but maybe 25% improvement. Botox, nothing. Cannabis, nothing. Aimovig, pattern changing a bit but no change after 2 months at higher dose, giving it another few months.

    So I am currently taking baclofen, tizanidine, aimovig and amtripyline with almost no improvement. I have forced my doctors to remove the other ones before I try something new otherwise I would be on multiple multiple meds. Amtripyline will be dropped in the summer because it did help the depression and I want a calmer time to taper it.

    I have had severe rashes, severe constipation, dizziness, hallucinations and many other side effects you have to deal with for months until you can decide the medication isn’t working for you. Yup preventatives suck but I still am game to try new ones because you never know if one will be “the one” that stops the migraines

  • marycr8on
    1 week ago

    Your story sounds familiar to me. I have been a chronic daily migrainer for more than ten years with no luck with preventatives. My husband’s insurance is really good, when they approve medications, as we have no co-pays and I can see doctors in most hospitals and clinics. What’s been really frustrating, has been trying new medications. I tried to get the free trial of Aimovig but I didn’t qualify. (I even had one of their representatives helping me.) After a month of going round and round with my insurance, they finally paid for it. After three months, out of the blue, they sent me a letter telling me they would no longer pay for it since it wasn’t working. I have absolutely no idea how they knew that, I hadn’ even told my doctor that, yet! So now I’m back to nothing, not even rescue meds. It’s all very frustrating and depressing.

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