They wont stop

[Blackedout]

So I've been on topiramate for about 4 months now and my migraines were stopping and things were going well. I had a few weeks were I was getting hopeful that the meds were working and now I'm back to getting bad headaches again everyday that get slowly worse as the days go on and by night time are migraines. I dont know what to do anymore. I was supposed to have a head scan on may 4th that I was on a year long wait list but because of covid I now have no set date for it anymore. I just want to cry. I dot see my neurologist until december 2nd and I just came back to work on the 11th from my second sick leave due to my migraines. I'm losing hope. I'm just in constant pain. Nothing they have given me works. Non on the triptans work, topiramate isnt working anymore or I need a higher dosage, cambria didnt work and they wont try anything else until hey have ruled out topiramate. I feel like a zombie. Wake up, go to work, sleep and repeat. Anyone have any tips and suggestions?! I'm at with end. This is 2 years of severe migraines and 10 plus years of suffering from headaches and I'm only 24 😔

[Onthemove1971]

I am so sorry you are in pain..

Here are 2 reources that have helped me a lot.

Migraine world summitt

migraineworldsummit.com/

Also, "Heads Up" podcast- these are short episodes from 2 UK migraine specialist. I love them, they have special guests.

Curious: do you sleep well? Do you have neck and back pain? These are really important to correct.

I start ( as soon as I feel a pain tinge) with cold Pepsi and 2 OTC migraine medication. Drink quickly, a can that is cold. Neurologist say it is the cold in your system fast. I wait, if pain gets worse I start a triptan ( many to chose from- imitrix or max alt, have helped the most). I wait a little and use ice/heat. I drink hot peppermint tea. Dark room, no noise. I try 1 more and after that I have a injection of Imitrix. This usually stops it instantly! I would take this any time. It has kept me out of the ER.

I also use a roll on pepermint oil that I smell, especially if I am someone where there is strong negative smells.

Hope this advice helps!

[Blackedout in reply to Onthemove1971]

Thank you for the advice. I will definetly have to try these and see if I can get any of the medications that I dont already have

[GreenWitch91]

Hi there. I have been recently experiencing headaches due to my new prescription. I am not sure if this is helpful but my friend suffers from chronic migraines and she gets botox in her jaw and forehead and she said that has worked wonders. Neck and back pain can also cause migraines (I know its covid and massages are expensive) but that could be something that helps too? I hope that's helpful!

[Blackedout in reply to GreenWitch91]

Hi, I have heard about botox just never looked much into it. Definelty will have to and the massages I dont think are covered under my benefits but I have to check. Thank you 😊

[Monty123]

Hi - mine also build over the day and culminate in a migraine by evening.Pregabalin helped me hugely but dr reluctant to prescribe as now a controlled drug but it stopped migraine completely. Drs think I have rebound headaches from

Constant codiene / maxalt use so going cold turkey at mo . Cefaly device really helping me - soon as I get a niggle over one eye I take myself off and put it in for 20 mins and it stops ! Borrowed from

Headache clinic . So feel for you . There is a

Lot of us out there . Keep looking for the answer . My sister in USA is on amitryptilline 30 mg at night and that has helped her . Lots of things to try

. Best of luck

[Johnny-One]

I have been on Topiramate 450 mg per day for 14 years now; 5 tablets a day. This is two on a morning and three on an evening. I can go up to 1,000 mg, but the most I have seen anyone on is 500 mg.

Some people say about memory loss, and others say about weight loss, i.e. you forget whether you have eaten or not. I think using any strong drug you need to be careful, but I have not suffered weight loss ... I wish!

With memory loss, when I first started using it, I was finding I occasionally started forgetting words, but could not decide whether that was due to other conditions or not, so I started taking Omega Fish Oil, which is supposed to help with brain functions. I have not suffered since. Now is this because I am taking Omega Fish Oil or just because I believe it is good for me?

I was asked by my neurologist to measure my headaches from 1 to 10, and also the frequency. With 10 being the worst possible. I used to be on a 9 or a 10 most days. I now get about 2 or 3 headaches a month maximum and the most I get as severity goes is a 5 or 6, and even that is rare.

I have two degrees, know over thirty programming languages, recently taught myself two new ones, and so I keep myself mentally challenged constantly. I am still a black belt in Judo (although am not allowed to do this anymore), can still swim and walk about four miles each day, so am reasonably fit for my age, but not an athlete.

As an aside, I am also taking Gabapentin because my headaches were interfering with my sleep patterns, 400 mg each night. Gabapentin is now classed as a Category C drug. Once again, I am allowed up to 1,000 mg but I found at 600 mg I was not as alert the next day, so cut back down to 400 mg. I am now able to sleep at night, without my headaches interfering with my sleep.

I am also a narcoleptic sufferer, and have chronic lung issues, so am not as active as I used to be 15 years ago.

I really hope that helps, and gives you an insight. To look at me there does not look like there is anything wrong with me, and that is the way I want to keep it. I want to keep as fit as I can.

Like I say my headaches are under control. I once came off the Topiramate, but the headaches came back with a vengence. They take about 6 weeks to take affect.

[Gardenlassy]

I'm so sorry to hear you're having such a bad time with your migraines. You don't say if you are male or female but as you say you've be having these for 10 years & you're 24years old I'm guessing you may be female & these migraines are hormone related mine are for sure & I struggled in my younger years & then more recently big style as menopause started. topiramatehas been the drug for me I have found 2 x 25mg am & pm has done the trick but was started only 25mg tablet at a time slowly building up. You don't say how much you're taking maybe you need to take more? Can you speak to your GP perhaps If hormones are behind the migraines maybe you can try one of the birth control pills/patches etc to help regulate? Just wanted to float the idea for you. Certainly without realising my severe migraines went when I was taking these.

Otherwise perhaps ask for an urgent xmcall with the neurologist to assist.

Hope you can get some help soon.

[Blackedout in reply to Gardenlassy]

Does taking the topiramate spread throughout the day help with migraine pain? My neurologist told me to take 100 mg a day in the morning specifically. I took 25 for 2 week then 50 for 2 weeks until I got up to 100. I'm currently on birth control but I have a phone call appointment on the 2nd and am going to see if I should switch to something different in case that is a possible factor.