Indefinite use of medication

I realise i might not get many responses to this. Has anyone here found successful medication and then continued it long term? (over 12 months). I usually hear that preventatives are given for 12 months and then discontinued and patients are usually fine without treatment. However I was on successful treatment for 2 years but when discontinued my VM came back really badly until recontinuing treatment. I would very much prefer to stay on treatment indefinitely, for the rest of my life if necessary. I’ve already tried 5 other medications with no success. But i haven’t heard of anyone continuing preventative meds indefinitely, especially as I take Flunarazine which is only administered from hospitals not GPs. I can imagine patients being allowed to take a drug like propanolol indefinitely because it’s a simple, cheap med used for lots of conditions but I was wondering if anyone here has continued long term with successful medication, whatever that may be. I can’t see myself being able to discontinue the meds given my previous experience. Not sure if I’d be allowed to take Flunarazine indefinitely or if I’d be expected to keep trying to come off it.

Hi Miss, I’ve been on different preventive meds for my VM since they started in 2016. My neurologist treats VM just like any other migraine. I’ve tried most of the older meds, at least 1 from each class to appease the insurance company; my med history reads like a shopping list. The newer meds are the life changer for me.

For example, I was on propanolol as preventive but had to stop. It lowered my blood pressure to the point I wasn’t able to do my job. My boss was ready to call me in to the office for the performance review chat to put me on notice, something has to change or else. I was way too mellow and ineffective. Another was, Topamax the typical starting point, it worked but the swiss cheese brain side effect was too much to deal with; I couldn’t find the simplest of word or name.

My long term meds are: Botox & Emgality. I throw in Nurtec as a preventive if we’re going someplace & I want to hedge my bets, along with propanolol and maybe a little dexamethasone if my head feels the slightest sense of pain. This combo cocktail seems to work for the most part.

My rescue meds are Nurtec & Maxalt, depending on my head feels, I toss in a little dexamethasone if my head still doesn’t feel right after a couple of hours.

Before the newest class of drugs (anti-CGRPs - Nurtec & Emgality) I was a mess on a regular basis, even with Botox. I still have episodes but the pain is not nearly as debilitating as it was a couple of years ago nor are the headaches as frequent. Treating early is tough because my vestibular symptoms can be very subtle and easy to dismiss; I’m own worse enemy at times being stubborn.

I hope this helps. In general, it is possible to be on whatever med long term as long as it works and doesn’t cause other unintended consequences. I’m not familiar with Flunarazine, as it isn’t available in the US, reading about it I think I would knock me for a loop as I’m sensitive to any type of downer.

Be your own advocate, unless your doctor has migraines and truly empathizes with your condition, all they know is what the the book says. I’m fortunate to have a neuro with migraines, she gets that you do what you have to do to in order to have a quality of life. My Nurtec/Maxalt combo was self-prescribed. I shared what I did and the resulting no the triptan (Maxalt) brain fog. She blessed the combo as safe.

She learns from her patients as new meds become available or people try different combinations. If x doesn’t work, she tries y and asks for your honest feedback. She compiles all of the world information to help other patients. Nurtec for example, her conclusion from patients & her own experience, it doesn’t work well as an abortive but works as a preventive.

Sorry for the long soapbox, the moral of the story is: use what works for you and advocate for yourself. The power of these forums allows you gain to insights from others to ask your doctors informed questions. I wish you the best on finding the most effective treatment to improve your quality of life; it’s the 21st century we shouldn’t be suffering in silence. I’ll leave you with a mantra I try to live by: “Pound the Water” @Kristen Chenoweth.

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Thanks for taking the time to reply. I tried Aimovig a fee months ago and it had no effect on me at all. The only one I’ve found to work is Flunarazine. Being on the nhs I’m just worried they won’t want to leave me on a drug indefinitely, due to cost. I’ve never heard from anyone else who takes a preventative long term. I’ve only read about people taking them temporarily then coming off the drug, which I tried but didn’t work. I will be my own advocate and hope my neuro would let me take the drug as long as I want to. It’s the only thing that gives me a life worth living. It’s alright for doctors to say “try this or try that” when they’re not absolutely dibiliated by VM.

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I want to let you know, if Aimovig didn’t work, please try Emgality and/or Ajovy. I was on Aimovig for a couple of years with some relief. My insurance changed the formulary forcing me to Emgality. It actually works better for me. Don’t give up a whole class of meds if one doesn’t work for you.

If you can get them to prescribe Botox, please try it; make sure the doctor knows what they are doing; there are 30 some specific places to inject. You might just be surprised how much it helps. Full disclosure, it may take 2-3 rounds to see improvement. I can tell when it wears off at the 10 week mark out of a 12-13 week cycle.

I fully understand the “try this/try that”, my first neurologist told me I just had headaches; pretty much said ‘suck it up’. I’m not a big guy, but I wanted to grab him by the collar & throw him against the wall, I was so angry.

Another thing to try is casting a wide net asking around if people know people with migraines. You’d be surprised how many people know people. At first out of shame, I kept it to myself. As I shared my story, I found more & more people; that’s how I landed on my current neurologist. Now, I’ll tell anybody, I suffer from migraines and share my story and they share their story. We’re all one big extended family with our common drama.

Supposedly VM is a “rarer” form of migraine, but I’ve run into people with it. I don’t know if it’s like attracting like or what; we’re out there hiding in plain sight.

Another resource if you haven’t checked is the Migraine World Summit. It occurs once a year, the interviews are free to view when they are first broadcast. After the first broadcast, there is a fee to see them. I’ve gotten a few nuggets out of it, it’s definitely something to put on your calendar for next year.

Thanks for the advice but having found a drug that works for me i don’t want to be trying others unnecessarily. Botox is very inconvenient because of having to travel to the appointments so I dismissed that. My neuro ssid that since Aimovig didn’t work it was unlikely that another drug in that class would work although i could try it if I wanted to. I opted to go back on Flunarazine. Usually if one med in a particularly class doesn’t benefit migraine then there’s no point trying another. I’ve had VM since 2010 so i’m aware of all the sources of information out there (mostly they aren’t even correct). I’m hoping I can stay on Flunarazine.

I found this clinical review which discusses discontinuing preventative meds and it states that some patients may wish to stay on it indefinitely. I’m hoping I can be allowed to do so.

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I’m sure clinician discretion can be applied, yes the usual protocol is meds for 12 months and then stop but you’ve already done that and the VM came back. The NHS has millions of patients on long term drugs for various things and it doesnt seem to be an issue. Normally they review your medication once a year usually during a phone consultation. Mine always get reissued.

Maybe mention it to your doctor next time you see them and say that you want to be able to stay on Flunarizine indefinitely as its the only thing that has worked and its making you anxious worrying about being without it. And emphasise the fact you’ve already trialled without it and it didnt work out.

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Thanks for the advice. If my neuro suggests coming off it at some point I will definitely say that I don’t want to and explain why. It’s just at the back of my mind thst he’ll want me to keep trying to come off it and I absolutely don’t want to go through that. I desperately want to move on with my life because VM has kept me a prisoner for 13 years.

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I’m currently taking Venlafaxine, been on it since January so my 12 months is rapidly passing. I’m not seeing the Neuro anymore so if there is any query over my medication my GP emails them asking for guidance, he’s very quick at responding.

I’ve got mixed feelings tbh, one the one hand I’m dreading withdrawal symptoms which can harsh on these sorts of drugs and obviously dont want VM back again either, but on the other I’d like to see if I can manage without and I certainly dont want to be on Ven longer than I need to be. I tried 5 other meds before staring Venlafaxine.

I had several problematic experiences with antidepressants before as I used to take them for Fibromyalgia pain and sleep problems and always vowed I wouldn’t use them again so having to use Ven this past year felt like a massive step backwards for me. The fact you are happy to stay on Flunarizine indefinitely just highlights to me how bad you must have felt before. I really hope you get your wish :smile:

The only side effect I have from Flunarazine lastt time I took it was parkinsonism,which is why my neuro took me off it. The effects were so subtle they had no bearing on my life at all and i would gladly put up with them - the benefits far outweigh the negatives. It’s the only drug that’s worked for me and I’ve had enough of VM dominating my life. It dominated all my 20s and half of my 30s. I’ve never had a job or a proper relationship. I’ve been trapped in a hell hole and I finally want to move on with my life and live instead of just exist. VM has been really severe for me, worst thing i’ve ever dealt with. I absolutely don’t want to have to give up this med, even if it causes side effects but i’m not sure how my neuro would feel about that.

No-one understands how absolutely horrendous VM can be unless they’ve hadd it severely. Even those who have milder symptoms don’t get it. My neurro can’t understand because he’s never had it but he does understand the mentality of his patients because they’ve told him how bad it is. He wasn’t surprised in the slightest when I told him I wanted to go back on Flunarazine.

I’m sorry that Venlafaxine has had negative effects for you despite the positive. When drugs do that it’s a choice of which is more tolerable. It shouldn’t have to be that way.

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To be fair I’ve not had too many side effects from Ven, which surpised me as I’m very drug sensitive. Some nausea, a bit more sweating but nothing too bad. I’m just someone who dislikes being on meds if I dont have to be. I have several long term conditions, Fibro, Ehlers Danlos, underactive thyroid,B12 deficiency.

The last two require lifelong replacement or I could be very seriously ill so thats a foregone conclusion. I used to take a lot of meds for Fibro, pain killers, sleep meds etc, but I weaned myself off all of them and decided to manage without and did for 7 years until VM hit. Hence my feelings of failure about needing meds again.

I definitely don’t think it’s a failure to need meds. It’s not your fault, if your body needs medication then it needs it. Definitely not a failure. Some people are just lucky not to have conditions that require them. I’m perfectly happy to take meds if the side effects don’t impact my life. Without them, life was absolutely miserable.

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Hey, I’ve been taking Amitriptyline for almost 4 years now. Initially at 10mg, upped to 20mg March 2022 after relapsing badly. I currently take it alongside Betahistine and don’t really have any plans to change this in the near future as although I am doing well, I still do suffer attacks and regular symptoms. Albeit all much more manageable! I don’t want to be taking it forever, but it’s a very personal choice I think! I figure that I need my inhalers to manage my asthma, and at the moment I need my vestibular meds to give me a quality of life. And that, for me, right now, is worth sticking with.

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Thanks for the reply, I appreciate it. Good to hear you’re doing well.

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I’ve been on pizotifen at varying doses and the lowest dose of clonidine for almost 5 years now. The idea from my neuro was always to come off “when stable for 12 months” (whatever that means) and see… but I’m not under a neuro anymore and my GP isn’t useful. I’ve met people with migraine headache that are on the drugs permanently 20 years plus.

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Thanks for sharing that. I honestly have never known anyone be on meds for so long because people who feel better tend to not be active on the internet so we’ve no idea how long they stay on meds for. I’ve only heard from people who successfully stop the meds and all the migraine websites say patients usually discontinue meds after 12 months. So I’m pleased to hear it’s possible to continie with the meds. My meds are hospital prescribed only so my GP won’t be able to prescribe them in future, so I’m assuming I’ll have to keep seeing my neuro every few months for the foreseeable future.