I'm weaning off topirimate for migraine due to side effects. I've been on this for 2 years but memory loss and hair loss is pretty bad and my Gp thinks it's messing with my HRT too.
I take 25mg 4x and have got down to 25mg 2x a day but l have had my first week long migraine which worries me.
Am l doing the right thing coming off. What other drugs should l take instead of topirimate. Paracetamol and Ibuprofen have not helped. Tia
Hi chrissy33. I am actually glad that your post raises the concern of anticonvulsant medication messing up with HRT. Nowhere I could find any info on this and women going through perimenopause and menopause on HRT are being treated the same way as men or younger women. I was told by a specialist that because anticonvulsant medications target the pituitary gland in the brain, which happens to be the same gland regulating hormones, anything can happen. Anyway, Lamotrigine can be used instead of Topiramate but it is much more expensive and not widely prescribed. There is Pregabalin that could possibly help.
All the best.
Thank you for this. It's only in the contraindications that it mentions HRT and topirimate use with caution but neither my migraine doc or HRT nurse picked up on this.... So now l have to give one of them up and no way am l giving up HRT. I am also on the old style HRT Premarim which is another battle, l have been advised patches or gel is better for migraine sufferers but again they want me off my migraine meds first before looking at this. The Gp said come off instantly too!!! I said are you INSANE... I'M 4 weeks in to my gradual weaning off and migraines are back so gradually does it.
Just my opinion but I have a Wizard for a neurologist and he has said to never abruptly come off any of my AEDs.
I am currently on 100mg of topiramate at bedtime but take 300mg of gabapentin morning & afternoon and 900 @ night for another issue but I’m sure it doubles up. I also supplement with COQ10, B2, and magnesium glycinate. I have migraine w/o aura and they have been well controlled for about 3 years. I do have Maxalt as an abortive that I use, maybe once a quarter if I get a breakthrough migraine. Hope some of this is helpful. (I also have an Uber rare condition called Stiff person Syndrome but the migraines preceded)
D🏃🏽♀️
Thanks. My Gp has not given me any other meds to take in replacement of topirimate as yet so l am just taking over the counter. I spent most of last week asleep during the day as the migraines were waking me at night. The sun was killing me too
I hope you find some relief soon! GP are inadequately trained to manage migraines, generally speaking. Taking you off topiramate suddenly without a replacement and especially without a referral to a neuro is irresponsible.
Magnisium, max dose 1600. I take it 3x daily. If it doesn’t work in 3 months switch types.
I've been taking 400mg a day of oxide but no difference, just switched to citrate 600mg a day? Can I really take as much as that?
I have been shocked at the high dose. 2 Neurologist confirmed 1600 max a DAY. I have been taking 600 a day and it helps so much. The lunch dose is the one that helps the most. Always around 11:30am I feel the tinge of pain and take 1- 100mg at noon. And it goes away. I also take Feverfew 2x a day, I did a ton of research and this is recommended by the AMA.
I have barely needed my Imitrix in the last few months.
I also keep my Imitrix injection with me and when the pain gets to bad I use it.
I have really learned to take medications before I feel pain.
Good luck!
I have 100mg tab and 400mg tab and I take 400am,100mg,100mg and this works best for me. 100mg am 100mg noon and 100mg bed is not enough. I have played with the dose to get what is best for me.
Also, have you listened to the HeadsUP podcast? They have helped me so much. They are 2 UK doctors that only treat people with migraines.
Hope you find what works for you.
Glad you are switching. I have permente memory loss from topirimate. But am doing much better.
No l have not . Thanks l will look now. You are right the memory loss is shocking to the point l was sure it was early onset dementia but the Gp just brushes it under the table but trying to get re reffered to a neurologist now will be near on impossible. I will certainly listen to the podcast. I was given a diagnosis of possible hemiplgic migraine but l am posative it is not that
I first noticed it with forgetting passwords for accounts..any # past 3-4. I hope you can get off have good results.
Please listen to the Podcast they have a number and they are free.
I have been impressed with Feverfew.
Please let us know how it goes. We are here to support you.
I just got start with the Heads up podcast..... Love their insites! Most of them are under an hour.
I hope you can go back and listen to a lot of them. Enjoy!
Hi chrissy33, as a long term sufferer with cluster headaches, I understand how painful certain types of headaches can be,I'm also on topiramate 2×50mg twice daily,and I also take propananol 40mg 1 twice daily, I'm a male by the way,however it took many years before a diagnosis from a neurologist just recently and I'm due to stop the propananol, my point is that have you seen a specialist? and rather taking paracetamol etc,do you feel this will help your cause, I know its a lonely place when you're head is thumping away and you feel you are left to your own devices ,and you are trying anything to get rid of these terrible migraines, a more thorough approach maybe needed, don't take no for an answer, its your health that is been compromised, and just say you are prepared to wait, its within your rights,myself personally the topiramte works well for me,but I have had a period of ten weeks of night time headaches solid,and I was crying with the pain,and that's coming from a grown man!!! But each headaches are different, and cluster headaches are absolutely brutal, so you have my upmost sympathy! I really hope you can get something sorted out,and say you can't carry on like this,and you need further assistance, best of luck, thanks.
Thanks for the reply, lm sorry to hear about cluster migraines l have heard they are absolutely brutal. I will ask about a referral to the migraine clinic. I'm scared to come off the topirimate but also scared to stay on with all the side effects. I'm torn with what to do. Stay safe
Hi Chrissy,I’m a late 40’s female who started menopause young (47). Had 1-2 migraines a year from the age of 7, then started peri-menopause & all hell broke loose with the migraines. I was put on HRT - estrogen, progesterone & testosterone, along with T3 thyroid meds & it controlled the migraines for 3 years - amazing! Once I started menopause, that’s when things turned upside down & migraines were off the charts… basically daily since April of 2020.
I was on 100 mg of Top for 6 months & coming off it was horrible, like you, i was questioning the idea of staying on it, even with all the side effects. My opinion, continue with the taper but go really slowly. Initially I was dropping down 25 mg every 2 weeks, but that was too fast & migraines were baad! So I dropped down about 12 mg every 2 weeks (I could cut my 25 mg pills into quarters); it took a long time to get off it, & even when I stopped there was a period of some weeks while it exited my body completely, but I’m so glad I persevered - vertigo improved, tinnitus went away, & daily horrible headaches have not been as bad.
Good luck 🍀
Oh, my!
Wow that's amazing to hear. I also have tinnitus in one ear. I hope mine will go. I've been off topirimate 2 weeks now so fingers crossed 🤞. Only one major migraine however l don't know how long this stuff stays in my system
Hi, I know you wrote this post a while ago but I’m new and have only just seen it. I wanted to reply to see how you and others who replied are doing as I seem to be going through similar things now. I am 46 and my migraines have gone crazy - I think peri-menopause. I went onto topiramate which initially seemed to work but then needed higher and higher doses but my migraines went haywire - almost daily. Also getting tinnitus and brain fog/poor concentration. My neurologist thinks the higher doses of topiramate have interacted with the progesterone only pill which was helping reduce my migraines and made them worse. I’m now trying to wean off the topiramate but getting horrible withdrawal effects - anxiety and low mood. I’m reducing by 25mg per week but it’s going to take about 6 weeks to come off - and it’s a long time to have these horrible withdrawal effects. Did yours settle quite quickly? I’m also really worried the memory loss and tinnitus won’t go away - did yours go once you had come off the topiramate?
I'm actually back on topirimate after migraines came back but now on gel HRT instead of tablet form so better for the liver lm told
Sorry to hear your migraines are back. Hope the topiramate and HRT gel combination works
I still have really bad brain fog and anxiety and tbh don't know if it's menopause or topirimate or both but for me l need zero migraine. Now no sleep is the hard thing which is meno what a nightmare. Good luck l hope u manage to get off and stay off
Thanks. It’s a complete nightmare trying to work out what symptoms are migraine, menopause, caused by drugs or drug withdrawal. I hate the idea that this drug I’ve been on for months might have been making things worse but also scared that stopping it might make things worse! I get the feeling it all comes down to hormones so maybe HRT is the answer…
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