I saw my consultant today (it has been 3 months since I last saw him). I do not think I am seeing much benefit from the Topiramate, and after a long discussion he came to the conclusion that he thinks the Topiramate could be contributing to my severe insomnia and depression. Therefore he has decided that I should wean off the Topiramate.
It has been a bit of a fight to get my consultant to prescribe me a painkiller to use when my migraines are at their worst (everyday - lmao!) as he wants to prevent me from getting medication overuse headache (which is understandable, I guess). However, today he has decided to prescribe me Rizatriptan. In the past, Sumatriptan never seemed to help at all, although he said it would be worth giving another triptan a go. He said if after this, I can try one more triptan, and if that doesn't help, then my body just simply doesn't respond to the triptan group.
I have 2 questions
1 - Does anyone have any experience of weaning off Topiramate?
2 - Does anyone use Rizatriptan - if so is it effective?
The consultant said the Rizatriptan can only be used once a day and to save it for "emergencies". He also said to limit the use to maximum 3 times a week. I really don't think he understands how severe my pain is on a daily basis with these horrific migraines.
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AMG26
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I been on Topirimate and Rizatriptan. I didn't have any problems stopping Topirimate. Rizatriptan didn't work for me, I've 5 out the 7 triptans that were available at the time. Being allowed to take it 3 times a week would be deemed as overuse by my neurologist, 6 triptans a month plus 2 days normal painkiller is the maximum I've ever been allowed to take in order to prevent medication overuse headache. I've been chronic for 20 years.
That’s bizarre regarding the difference of advice! I am going to try and save it for the worst of my migraines, but it’s nice to finally have a pain medication I can use. A lot of the advice I’m reading online for Rizatriptan states to use it no more than 10 times a month (Mayo Clinic etc.). Thanks for the reply.
I tried, topiramate, sumatriptan, migraleve all had little to no effect on my migraines. I actually use panadol extra red now and is extremely effective for me. I take it at the first sign of a migraine and it stops it in its tracks. At one stage I was having daily migraines. I usually only need one does or two if it’s a particular bad migraine. I don’t get any of the hangover type symptoms I did with other medication. I have recommended it to several people now and they all stated it helped with their migraines. It doesn’t help me with headaches caused by viral infections.
I’m not saying it will work for everyone but it has to be worth trying.
Thank you for your reply, I have tried migraleve too and sometimes that can be effective. I will have to try Panadol! Can you take it with anything else?
Not sure I only use panadol now as I can’t use other medication due to kidney disease. I take the panadol, have a drink water or tea and lie down for half an hour. Hope it works for you.
Have you listened to the Heads Up podcast? They have very good insights and education about migraines. Key things I have learned : drink plenty of water, increase the magnesium supplement in my diet, and monitor my migraines and be my own advocate. If you find a trigger, avoid it. Get plenty of rest.
I know that not every treatment is for everyone. Keep the dialog open with your doctor!
Yeah I’m aware of that, didn’t take Sumatriptan daily either.
No I haven’t heard of that podcast, will look into it.
Unfortunately that is something I have tried for a long time. I drink 3 litres of water a day, get plenty of rest where I can, and have just started on the Magnesium. I have always monitored my migraines and inform my doctors/consultants of all changes. I also have no triggers for my migraines, I even wake up with them/they wake me up in the night. It seems that medical treatment is the only way forward for me at this stage - the pain is insufferable, I have migraines every day.
With chronic migraines the general advice is to not look for triggers. This is because once your brain is in a hyper-arousal state everything is a trigger and you'll just get neurotic looking for them.The advice on magnesium is mixed, the data from a UK point of view is old and inconclusive. I've been on magnesium for a year or so, doesn't make any difference but I take it for a different reason. They generally like it in the US though.
Water will only help if you are actually dehydrated which personally I think is unlikely if you live in the UK.
The reason there are different views on how many pain meds you can have is bc it's a sliding scale.
Everytime you take a pain killer, of any kind for any reason, the pain pathway is stimulated, the more this pathway is stimulated the stronger that pathway gets, the more sensitive it gets. Sooner or later that pathway becomes overly active and you end up with medication overuse headache. Some people's brains will be more sensitive than others and will reach this point sooner than others. I have multiple pain conditions so the likelihood is I will reach this point sooner than others particularly because my brain has been in a state of hyper-arousal for 30 years.
Although this can seem quite logical this isn't the case for non-migraineurs, people with arthritis, for example, can take painkillers everyday for years with no ill effect, it seems to be something particular to migraineurs sadly.
Hi. This thing with drinking plenty of water won't help you more than anything else. If you manage your 2 litres of liquid a day, you'll be fine. Regarding triptans, you can usually take up to 2 within a 24 hours period, up to 6 times a month. Check the label, rizatriptan could be different. Sounds like your specialist is not following general guidance. Good luck.
The label says I can only use 1 a day, a lot of the advice that I’m reading online for Rizatriptan says to use it no more than 10 times a month? (Mayo Clinic etc.) I will avoid using it where I can and save it for the worst of my migraines. Thank you.
That's a real shame. I also had to suffer pizotifen, topiramate and others for literally decades. Ajovy didn't work instantly. It took about 4 months before I suddenly realised that I was having much milder episodes and then so few episodes that they're hardly noticeable. I can still 'feel' migraines hovering but a sumatriptan injection or even Anadin Extra will knock it on the head really quickly and I can carry on with my life. I'm even starting a full time job in two weeks, my first in over 20 years.I really hope you find the right drug for you. Did you find any improvement with Ajovy?
Sorry for such a delayed reply, I haven’t been on here for ages! I hope your full time job is going well
I didn’t really find any improvement with Ajovy, but the last time I saw my neurologist I asked if I could try another anti CGRP. If I don’t have any luck with my next round of Botox, he said I could try Emgality which is like Ajovy!
Anadin used to be suuuuper helpful for my pain but not so much anymore
Yes, I have experience with all 3 topirmate, imitrix and rizitritane..
Somethings to consider.
Have you had a sleep study? If you are waking up with migraines it could be a sleep issue.
Another thing to really focus on is the dose. Many people do not understand that if they have not started on one dose, waited and increased the same medication, you can't really say a medication doesn't work.
There are steps to take and consider not stopping until the pain is gone.
I am very excited you started taking magnesium. You should take it for at least 3 months before you can expect it to work. If it does not decrease the pain intensity in 3 months, you are on the wrong type of magnesium. I started on Magnesium Ocitate and now I am finding great success on Magnesium Glyciniate. Also, I have been told by a number of Specialists I can take up to 1600mg daily. I take 400mg 3x a day. I didn't really see a difference until I added to lunch dose.
Here is what works for me: first tinge of pain cold can Pepsi and OTC migraine medication. I wait no longer than 15min. If the pain is not gone, I take 100mg of Imitrix pill. Again, if pain is not gone I use ice get to a quiet place and take another pill 100mg Imitrix. I wait no longer than 15min. If I am stay in a lot of pain. I use an injectable Imitrix and almost9 90% of the time it goes away. But when I use an injection I feel no pain in less than 15min. If I am still in pain I call my doctor and get in or head to the ER.
In addition, I make sure I do not skip a meal and all meals with some kind of protein.
Someone's when things seem off I eat and that stops the pain.
I also her strick orders when I go to the ER.
Hope this makes sense. It sounds like to me magnesium should be a game changers. You could also consider Feverfew, this has helped me a lot also. I also drink decaffeinated peppermint tea which helps me.
Onthemove1971 thanks for your reply. I have followed all dosing instructions for every medication I've tried (slowly built up to maintenance dose by loading every couple of weeks), so I think it's fair to say the medications that I have tried, have not worked for me unfortunately.
I've seen that there is a huge amount of information available regarding Magnesium and the different types. I'm going to look further into it soon.
Unfortunately I've never tried an injectable Sumatriptan - it would be interesting to see if there is any difference from the tablet form. When you have visited the ER - how were they able to help you? I'm querying this because on numerous occasions my sister has suggested it.
I'm definitely considering trying Feverfew, I've read some great testimonials about it. Thanks for your help and good luck to you too.
I have had the most success with Magnisium Glycinate not oxinate.What has worked the best (and I am not sure a doctor would advise me of this) for me is taking it 3x daily ( especially at lunch time.
As far as injection... life changing. I was where you are and a Neurologist suggested the injection and this has stopped almost 100% really bad migraines. The best part is you know within 15min if it is completely gone. No one wants a needle injection, but compared to the migraine I will take it!
In my medical profile, my previous Neurologist listed instructions on how to treat my migraines at the ER.
I usually need an IV and hydration..then they give me "cocktail" in the IV.
Anti-inflammatory, higher dose on Imitrix and an anti nausea. I never take any opioid or narcotics to treat my migraines.
This will decrease the pain almost 90%, but it doesn't go away all the way. It usually then in a day or so go away.
There's different types of doses you can take with your topirapmate, and they are used for all types of headaches, migraine etc, and I take them for cluster headaches, I'm in a bad cycle of cluster headaches at the moment, and they've been on going since June, these are classed as suicide headaches because of the intensity, I'm currently taking 2× 200 mg twice a day, and also using sumatrapin self injecting needles, these are pre loaded and help stop the headache becoming a full " blown" headache, obviously migraine and cluster headaches are different, but use the similar type of medicine, and also I've been receiving a nerve block injection in base of my neck to try to combat these headaches, unfortunately nothing has stopped the cycle so far, but the headaches aren't as powerful, but I'm still relying on the medicine, and was previously only on 2×100 mg of the topiramate, I'm now awaiting to try a different medication, but I'm slightly worried as it causes your heart rate to be slower, and I already have a slow resting heart beat already, I think it's called verratamil,so I waiting to discuss this with my neurologist, and see what the specialist says, even drinking grapefruit just can cause a heart attack , topiramate affects my appetite; I don't eat as much, and people some people say it affects their long term memory, so far I'm OK with that 😀 I hope you can a resolution to your headaches, best of luck
Cb1963 thanks for your reply! I was on 2 x 50mg a day, so once in the morning and once in the night. I believe 100mg was the max my consultant was willing to let me try. I've never heard of the Sumatriptan injections, I have only ever tried it in tablet form, so that's really interesting to hear. Sorry to hear you experienced a few side effects, luckily for me I never noticed a change in my appetite or memory.
I have been referred for an urgent CT scan, so I've got my fingers crossed that will be done soon. I haven't had a scan in over 2 years.
Sorry I put my tablets dose down wrong it 4 × 50mg,twice daily, but still a higher dose,but it maybe worth enquiring about the sumapriptan injections, it all depends on how quickly your headaches come on, with cluster headaches they come on pretty rapidly, but it's the " pain" factor that these injections are often given out, and they normally stop a headache fairly quickly, the specialist wanted to supply me with oxygen, but because I have a gas fire in my flat it was a definite no go , the risk of an explosion was far to dangerous , I had a scan several years ago, and I knew these headaches were the same thing again, it had been dormant for a couple of years but they came back with a vengeance, I hope you get your headaches sorted out soon, and you get some medication to help with these , kind regards.
I use (sub-lingual) rizatriptan and find it to be quite effective IF taken at onset. Depending on dosage, there is a maximum you can take in any given 24 hr period, and its not a 'take daily' kind of pill. I've had to take a 2nd and sometimes a 3rd within a 24hr period if my migraine is really bad, but typically one takes care of it.
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