I have migraines with tinitus - preve... - National Migraine...

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I have migraines with tinitus - preventing medication advice please? Is Topirimate good?

shukudai profile image
20 Replies

Hello, I had proparanolol 80mg for a few months for preventing migraine. I think it was working a bit for my migraines but my tinitus got worse since I started it (well doctor said it couldn't be).

I finished my last dose of proparanolol last Friday and I couldn't get GP appointment before the last dose so I had a few days without medication. Then I got migraine today really bad (could be because of 1. not taking preventing medichine for a few days, 2. I ate a bit of choclate (usually I don't get migraine a little bar of choclate once in a while) 3. I am due ovulation very soon. 4. combination of all of those).

I am thinking to get Topirimate 25 mg if I can pusade my doctor to prescribe it for me. I've heard Topirimate works for some people with tinitus caused by migraine, and of course it is said it prevents migraine.

Does anyone takes Topirimate for migraine tinitus? I have tinitus all the time but it really get worse before and during the migraine. I usually have aura too.

I take sumatriptan for migraine attack.

Thanks in advance.

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shukudai
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mand82 profile image
mand82

I have tinnitus but its never been made worse by my migraine meds ,

I've been on sumatriptan , naproxen now topiramate

Jaxxa profile image
Jaxxa

I also suffer from tinnitus, and have been taking Topiramate (currently 200mg twice daily) for migraine relief. I didn't find it particularly effective so much for the tinnitus but it was initially very effective on my migraines - far more so than any and all other medications, however it did not take long (about 3 months) for my body to develop a resistance to it and now it is all but useless and my doctor has decided to phase it out as we no longer believe it to be effective at all, sadly. I was shocked that a drug that was so helpful and effective initially could go from hero to zero in about six months but that is what happened with me.

On the upside, I have just managed to get myself an ACTICARE TSE Electrotherapy pain treatment machine, and I can't believe just how effective this has been at relieving all my pain, including complete relief from all my migraines! The only downside to it is that it slightly antagonizes my tinnitus (just in my left ear, and only for a low level during and for a short time after treatment), but it is well worth it for the complete relief from migraine pain.

zigzag profile image
zigzag in reply to Jaxxa

hello, can I ask you when you went on Topiramate are there horrid symtoms that you have to put up with at the beginning til the body gets used to it.

Also what is ACTICARE TSE Electrotherapy . Is it a sort of TENS machine. Is it very expensive.

Many thanks , gill

in reply to Jaxxa

What is tinnitus?

manofkent profile image
manofkent

Hmmm....can't really help on the specifics of this question, but am amazed by how many of us suffer tinnitus as well. I had no idea...thought it was just me.

Angelface profile image
Angelface in reply to manofkent

tinnitus, hell yes, its a nightmare in the quiet isnt it!

I have been given a leaflet by the NHS as they told me that there is no medication for it at all.

zigzag profile image
zigzag

Tinnitus, yes me too!

zigzagger profile image
zigzagger

I suffer from tinnitus, vertigo and fullness of the ear. This has been diagnosed as Menieres Disease. Associated with this is migraines. I found propanolol unhelpful in my treatment, especially with regard to tinnitus. My main defence is careful control of trigger foods, no coffee, chocolate (except occasionally some white chocolate) no cheese, limited alcohol and no orange. I do take a prophylactic dose of serc to mange the MD and this helps a lot. There is quite a cross over in migraine and MD symptoms so need to be aware of that.

Jaxxa profile image
Jaxxa in reply to zigzagger

No coffee?! That would almost be worse for me than the disease! Argh! Take away anything else, but not my coffee! ;)

shukudai profile image
shukudai in reply to zigzagger

I have some trigger food. Garlic is one of them. Sometime choclate triggers migraine but not always. I only drink decaffanated coffee as I get upset stomach if I take caffeine. I can eat cheese with no problem. I don't drink any alcohol. I didn't know orange could be a trigger.

shukudai profile image
shukudai

Ummm, there isn't a medicine which calms down tinitus, is it? I know if you start tinitus 24/7 it menas usually you have to live with it:(

I guess migraine meds are hit and miss so I just have to go through one by one.

I have GP appointment tomorrow so I will get some kind of preventing medichine. I had some migraine left over from yesterday so I took another imigran again. I still have a few migraine in one month. I had 4 migraines(usually lasted for 4 days in December and started proparanolol in January. I gradually getting less migraines but still having at least twice a month. I am hoping to reduce migraine once a month - I think I will have difficulty avoid one comes with my cycle.

I hope everyone is pain free today.

Thanks your replies

Charlotte_NMC profile image
Charlotte_NMCPartnerNational Migraine Centre

Come to see one of our doctors and they will explain to you the options for preventatives. And about the chocolate bringing on a migraine, this is a myth! In fact one of the prodrome (or 'pre-migraine') symptoms is that you crave sweet things, so the migraine attack would come on whether you had the chocolate or not I expect!

shukudai profile image
shukudai in reply to Charlotte_NMC

Thanks for the invitation(?) :). I don't live near London so it is rather diffecult but if I get really desparate I remember about this centre.

I got toriramate today and my GP said if this doesn't work for migraine or my tinitus doesn't go away he is going to refer me to the hospital. I had complain about tinitus last summer but the doctor I saw that time did my hearing test and didn't find anything wrong from it so she told me that she didn't do anything else. But today's doctor was more sympathetic and I got more than I wanted.

I hope Topirimate works.

hopefulforcure profile image
hopefulforcure in reply to Charlotte_NMC

I agree.......

mand82 profile image
mand82

Least you managed to get another doctor to do something about your tinnitus

All my doctor told me was that I just gotta put up with it as there's no cure or treatment and couldn't get me out the door quick enough , I get it 24/7 and most of the time so loud,

I hope topiramate works for you :) I've been on it for a while now on 100mg twice a day and its really helped

LindaPhoenix profile image
LindaPhoenix

Topiramate made me really ill. I was only on it for a month, and only 10mg a day - pathetic I know! I felt like a zombie, had no appetite, my eyes went funny so I thought I was getting an eye infection, I felt worse than if I had migraines, plus it didn't even stop the migraines! Maybe you have to be on it a while for the side-effects to go away, but I couldn't bear to be on it any longer and my GP recommended me coming off. I take a load of supplements now (400mg Vitamin B2, 600mg Magnesium & 300mg CoEnzyme Q10) a day and my migraines have improved massively. I still get about 2 a month, but no longer lose whole days to throwing up for hours on end with excruciating pain. I would recommend looking at alternatives to preventative meds as they're all licensed for other conditions as their main use (ie for epilepsy, anxiety etc) and have other implications. You obviously have to be careful too with supplements but on the whole I'd rather take them than the preventatives I've tried that haven't worked anyway & gave me a whole other list of problems. I found the Migraine Trust website really helpful with suggestions to try.

shukudai profile image
shukudai in reply to LindaPhoenix

I am sorry that you had bad reaction with Topiramate. I have been taking it for nearly 7 weeks and I had only one migraine. This is really a record for me. I had migraine nearly every week until I started Topiramate so this is saving me. I take one capsule of Topiramate 25mg just before bed. I didn't have any side effect to report.

It takes long time for some people to find a medication which matches. I hope you find one for you very soon.

I now wants to know when I want to come off from this. My tinnitus is still there and not any better...

Take care.

Pattipan profile image
Pattipan

I started to get tinnitus at the same time as migraines about three months ago. I don't get it the rest of the time and I know how lucky I am as my father and my husband were and are both constant sufferers. I tried persuading my husband to take Ginkgo Biloba and I think he did take it for a short while to humour me, but he said it made no difference. However, I did get some more a couple of months ago and within a few days I was no longer getting the tinnitus with my migrainous headaches (which are more or less a daily event). It may be worth a try. Get a good one from a reputable supplier though. Don't know if advertising is allowed, but I've been getting my supplements for years from the company Felicity Kendall now endorses!

You may have sorted this by now as I'm replying to an old thread, but anyway, good luck

Patti

kellythomas profile image
kellythomas

I had a bad experience with the topirimate it didn’t help much and I would fall asleep in the middle of a convasation. I was sleeping and sick all the time from it.

vcatay12 profile image
vcatay12

I’ve never had tinnitus in my life until I started on propanol for migraine prevention. The propanol has prevented me getting migraine but now I have severe pulsatile tinnitus. Propanol is an ototoxic medication however it is not documented in pharmacy handbooks.

Life isn’t fair 😩

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