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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

  • Selena Marie Wilson
    4 months ago

    This write caught my eye because of the title…my blog and its social media pages are actually named Down The Rabbit Hole lol.

    Preventives have typically been ineffective for me, and imitrex was a complete hit-or-miss.
    I’ve been daily chronic about 7 years – 24/7, 365.

    The only thing that has ever helped? BOTOX.
    It didn’t give me pain free days, but it did lower my pain level for a week or so before the peak effects kicked in. The peak effect lasted a few weeks, and during it, my imitrex was much more effective and so were my pain meds.

    The downswing was pretty much hell, but it was so worth it; I got to spend more time with family that didn’t include me wearing an ice pack and them having to remember to talk quietly. I got to spend time at the park with my grandspawn or being able to rough-house with him; I got to go window shopping with my daughter and thrifting with my son.

    2 years later in October 2016, I lost my medical coverage. I’ve been without any treatment since.

    It’s been hell, and that’s the nicest way I can say it.
    I never in my life thought that my needle fearing self would ever look forward to 31 shots in my head and neck, nor did I think I’d miss them so much once I couldn’t afford treatment or even a doctor visit.

    But I do miss it. It wasn’t a dramatic improvement, but even a few good days a month was significant for me and more than I’d had before or since.

  • mjva
    4 months ago

    Very interesting, but no input about the effectiveness of the botox treatment. Was it helpfull ? I live in one of the 3 european countries which does not acknowledge this treatment, but 10 miles from the border of one which does … I am tempted.

  • glassmind
    4 months ago

    I tried Topamax as a preventitive and immediately began having eye pain/pressure and vision problems. I refuse to try any other preventative until I see a neurologist or headache speciatist. I just have no faith in my GP to deal with this condition. My abortive Imatrex is also not working.

  • pigen51
    4 months ago

    I am in pretty much the same boat as you. I have had migraines my entire adult life. I am now 58, a married white male, on social security disability for migraines and a back that gave up the ghost after 35 plus years of foundry labor.
    I have tried pretty much all of the drugs you can think of, save perhaps a couple, and in all doses, and most combinations. It has gotten to the point where I am better educated on migraine headaches then many young doctors. They may only have a brief exposure to migraines while I have been to headache clinics, various neurologists, several family doctors, ENT’s, a university medical school, etc. I am now seeing a new neurologist in our small city, because all of the other ones won’t see me anymore, since they basically say that there is nothing more we can do for you.
    The new doctor is trying me on Aimovig, one of the drugs targeting CGRP. I understand fairly well the mechanism of this class of drugs, since I tend to read up on these things.
    First, when I was getting migraines years ago, the doctors thought that they were caused by blood vessels in the brain, and so they worked with drugs to either constrict or dilate the blood vessels to try and stop the migraine. The they decided that migraines were caused by a chemical imbalance, and they went with the triptans, and like the other treatments, they worked for many, but with side effects including strokes.
    Now they are thinking that it is somehow related to the CGRP protein, which they are saying they know causes migraines. Of course, they have used such sparkling language in the past, as well, and they still have not defeated migraines, so we shall see. With this drug, Aimovig, plus the other 3 due out soon, or they might already be out, they attack the protein. Aimovig plugs up the receptors so that the protein cannot bind with the pain receptors, kind of like a blocking action. The other 3 seem to bind with the CGRP proteins themselves to not allow them to plug into the receptors at all. Not a huge distinction, but still a distinction.
    The person being interviewed was saying that people who got 15 migraine days per month, could expect to get 2-4 less migraine days per month. She said that was significant, as it could mean as many as 48 days per year less migraines. And when you look at it that way, it does sound significant. However, I also am practical, and I have to look at the cost of the medication. The drug company paid for my first two dosages of the drug. The actual price of this drug per month is 700$. My copay, with me being on medicare, through the Blue Care Network, is 300$. As I said, I am on SSD, so I am on a fixed income. I have no debt, no car payment, nothing, so my wife and I live frugally. But even if this was a miracle drug, I simply could not afford to spend that much every single month on it.
    The only thing that I have found that tends to work for me is unfortunately a narcotic and something for nausea, and most ER’s around will not use narcotics for migraines. It is a hard thing, but I keep hoping for some form of treatment that eventually works.

  • mrst53
    4 months ago

    I am in the same boat you are. I have had migraines for 53 years. I have been thru the wringer with preventatives and their side effects or no effects. I do know more that most docs. I have shots in my head(not botox), pt on my neck( which worked as long as I was on pt). I am in a daily headache cycle. I am trying CBD oil now. It takes the headache away temporarily like most of my pain pills. No relief for the last several months.

  • mrwagner59
    4 months ago

    I have had migraines since I was 19 and have been prescribed preventive medications since I was in my mid twenties. Over the years my migraines have progressively gotten worse. The preventives work for a while and then stop working. Additional preventives are added, dosages are increased, or medications are changed each time. My mother and my sister both also had migraines. However, their migraines improved significantly at menopause. I was so optimistic that I only had to wait until menopause and I too would have relief. That did not happen, in fact, my migraines became much worse. I am now 59 and had to stop working several months ago due to chronic daily migraines. I have been receiving Botox injections for prevention of migraines and will have my 3rd treatment next month. I do not see any benefit yet. Also, I am prescribed 4 preventive medications and am at the maximum dose for 3 of them. I continue to have severe migraines 5-7 days every week. I rarely have a single day without unbearable head pain. I have tried many alternatives such as essential oils, herbal remedies and teas, diets, chiropractic, massage, etc, without much, if any relief. My next hope is to try CGRP and possibly the Cefaly device. I will not give up the pursuit of something that will help to tame these migraines. I appreciate so much, this website and everyone who has shared their stories. At least I know I am not alone in this daily battle.

  • Thiarnain
    4 months ago

    I’m in the same boat even giving up on Aimovig and now Ajovy. I admire one sufferer’s attitude to get on with her life as long as one is alive. It’s just very hard and painful to do sometimes…to stay optimistic and soldier on fighting each days as anew , yet same old battle.

  • susie105
    4 months ago

    I’ve suffered with migraines since I was a child but they really became a major problem for me in my mid teens. I’ve been unable to work for the last 20 years because of chronic migraines and I cannot/do not receive any support in the form of benefits, so my Husband is the sole provider. I’ve tried everything available in the UK on the NHS for preventatives and nothing has worked. Botox had the worst side effects of them all for me, first round helped for daily general headache pains. But for migraines it made them worse and untreatable with unbearable pain and I also had more frequent attacks. The second round of botox was absolutely horrendous, the pain of the migraines was off the scale, nothing could ease them at all. I also couldn’t open my eyes correctly and found that my head would wobble around and my neck and head muscles felt unable to hold my head up. Keppra also had horrendous side effects for me. Beta blockers helped lower my level very slightly, but they caused me breathing problems so I was taken off them. The only treatments I’ve not been able to try because they are not available here on the NHS the new anti CGRP drugs like Aimovig and the gamma core treatment. Now peri-menopausal I’m finding that my migraines are steadily getting worse, I only see a couple of days per month pain free if I’m very lucky and suffer with incredible fatigue. I have kept on trying what’s been offered, but I’ve run out of options. I’m sure there are many of us out there that have found the same issues with preventatives and it can leave you feeling like you are literally banging your head against a wall. I had to fight for Botox for a few years before it became available to chronic migraine sufferers in the UK, it was crushing to find it didn’t help me, I’d pinned all my hopes on it. Not so say that it doesn’t help others, side effects can sometimes outweigh any benefits of the various preventatives in some people. But I live in the hope that some day, something will become available to help people who deal with the agony of migraine attacks.

  • kellikens
    4 months ago

    Oh and CBD edibles tend to give a little relief when my meds don’t work.

  • kellikens
    4 months ago

    Botox stopped working for me. Just started Amovig but so far it’s not helping. I’m tired of this pain.

  • Dn2292
    4 months 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
    4 months 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
    4 months 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
    4 months 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
    4 months 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
    5 months 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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