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. Iāve already tried 5 other medications with no success. But i havenāt 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 itās 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 canāt see myself being able to discontinue the meds given my previous experience. Not sure if Iād be allowed to take Flunarazine indefinitely or if Iād be expected to keep trying to come off it.
Hi Miss, Iāve been on different preventive meds for my VM since they started in 2016. My neurologist treats VM just like any other migraine. Iāve 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 wasnāt 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 couldnāt find the simplest of word or name.
My long term meds are: Botox & Emgality. I throw in Nurtec as a preventive if weāre 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 doesnāt 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; Iām 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 doesnāt cause other unintended consequences. Iām not familiar with Flunarazine, as it isnāt available in the US, reading about it I think I would knock me for a loop as Iām 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. Iām 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 doesnāt 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 doesnāt 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; itās the 21st century we shouldnāt be suffering in silence. Iāll leave you with a mantra I try to live by: āPound the Waterā @Kristen Chenoweth.
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 Iāve found to work is Flunarazine. Being on the nhs Iām just worried they wonāt want to leave me on a drug indefinitely, due to cost. Iāve never heard from anyone else who takes a preventative long term. Iāve only read about people taking them temporarily then coming off the drug, which I tried but didnāt work. I will be my own advocate and hope my neuro would let me take the drug as long as I want to. Itās the only thing that gives me a life worth living. Itās alright for doctors to say ātry this or try thatā when theyāre not absolutely dibiliated by VM.
I want to let you know, if Aimovig didnāt 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. Donāt give up a whole class of meds if one doesnāt 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 ātry this/try thatā, my first neurologist told me I just had headaches; pretty much said āsuck it upā. Iām 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. Youād 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; thatās how I landed on my current neurologist. Now, Iāll tell anybody, I suffer from migraines and share my story and they share their story. Weāre all one big extended family with our common drama.
Supposedly VM is a ārarerā form of migraine, but Iāve run into people with it. I donāt know if itās like attracting like or what; weāre out there hiding in plain sight.
Another resource if you havenāt 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. Iāve gotten a few nuggets out of it, itās definitely something to put on your calendar for next year.
Thanks for the advice but having found a drug that works for me i donāt 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 didnāt 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 doesnāt benefit migraine then thereās no point trying another. Iāve had VM since 2010 so iām aware of all the sources of information out there (mostly they arenāt even correct). Iām 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. Iām hoping I can be allowed to do so.
Iām sure clinician discretion can be applied, yes the usual protocol is meds for 12 months and then stop but youāve 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 youāve already trialled without it and it didnt work out.
Thanks for the advice. If my neuro suggests coming off it at some point I will definitely say that I donāt want to and explain why. Itās just at the back of my mind thst heāll want me to keep trying to come off it and I absolutely donāt want to go through that. I desperately want to move on with my life because VM has kept me a prisoner for 13 years.
Iām currently taking Venlafaxine, been on it since January so my 12 months is rapidly passing. Iām not seeing the Neuro anymore so if there is any query over my medication my GP emails them asking for guidance, heās very quick at responding.
Iāve got mixed feelings tbh, one the one hand Iām dreading withdrawal symptoms which can harsh on these sorts of drugs and obviously dont want VM back again either, but on the other Iād 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 wouldnāt 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 
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. Itās the only drug thatās worked for me and Iāve had enough of VM dominating my life. It dominated all my 20s and half of my 30s. Iāve never had a job or a proper relationship. Iāve 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 iāve ever dealt with. I absolutely donāt want to have to give up this med, even if it causes side effects but iām not sure how my neuro would feel about that.
No-one understands how absolutely horrendous VM can be unless theyāve hadd it severely. Even those who have milder symptoms donāt get it. My neurro canāt understand because heās never had it but he does understand the mentality of his patients because theyāve told him how bad it is. He wasnāt surprised in the slightest when I told him I wanted to go back on Flunarazine.
Iām sorry that Venlafaxine has had negative effects for you despite the positive. When drugs do that itās a choice of which is more tolerable. It shouldnāt have to be that way.
To be fair Iāve not had too many side effects from Ven, which surpised me as Iām very drug sensitive. Some nausea, a bit more sweating but nothing too bad. Iām 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 donāt think itās a failure to need meds. Itās 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. Iām perfectly happy to take meds if the side effects donāt impact my life. Without them, life was absolutely miserable.
Hey, Iāve 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 donāt 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 donāt want to be taking it forever, but itās 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.
Thanks for the reply, I appreciate it. Good to hear youāre doing well.
Iāve 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 āwhen stable for 12 monthsā (whatever that means) and seeā¦ but Iām not under a neuro anymore and my GP isnāt useful. Iāve met people with migraine headache that are on the drugs permanently 20 years plus.
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 weāve no idea how long they stay on meds for. Iāve only heard from people who successfully stop the meds and all the migraine websites say patients usually discontinue meds after 12 months. So Iām pleased to hear itās possible to continie with the meds. My meds are hospital prescribed only so my GP wonāt be able to prescribe them in future, so Iām assuming Iāll have to keep seeing my neuro every few months for the foreseeable future.