Topiramate

[Fern27]

I have been taking Topiramate for my Migraines for about 10 months now and it has helped a bit

But I am starting to get them back again. My

Question is has anyone else found that this drug

Thins your hair and makes your head or eyes

Itch? I’m wanting to come off this now but am

Thinking this is going to be difficult. Any help

Would be appreciated

Many thanks 🙏

[Slim66]

I lost quite a lot of hair (evenly) whilst on 100mg a day. I’ve gone down to 25mg a day which stops me waking with migraine but doesn’t help my others but my hair is still quite thin but I lose less.

[Fern27 in reply to Slim66]

Oh thank you yes I’m the same 100mg a day and I have lost evenly at least a quarter of the volume Lucky I had thick hair lol but I don’t want to lose

any more and thinking if I cut down it won’t work

at all as I’m getting migraines now anyway so

Back to the drawing board !

[Gambit62]

I can't help you with side effects of topimerate other than to suggest reading through the patient leaflet or asking the dispensing chemist.However, wondering whether you should ask your doctor to check your vitamin and mineral levels as your symptoms also overlap with B12, folate and iron deficiencies, and also with thyroid conditions. All of these become more likely with age.

Hope you find an answer

[Penys]

Hi fern, I take 300mg of topiramate a day and the only side effect I've had is weight loss, I've lost 3 stone.I take it for my epilepsy and migraines.

[Fern27]

Oh lucky you I haven’t lost a pound only my hair 😩 I’m too scared to up the dosage in case I goBald lol

[Pam1952]

Fortunately, Topiramate worked for me. Like yourself, I had very thick hair but did lose a considerable amount on a daily basis. I can't understand why it isn't on the list of possible side effects.

[Fern27 in reply to Pam1952]

Thank you Pam actually it is one of the side effects but perhaps doesn’t affect everyoneBit like the weight loss.

[Johnny-One]

I have been on Topiramate 250 mg per day for 16 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. The last headache I had was a few days ago (a six), and previous to that was nearly 200 days prior to this.

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 to six 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.

The one thing I would stress though is everyone’s normal is different. Good luck.

[Hidden in reply to Johnny-One]

I’m also on Topiramate. I had the exact same experience as you. I was also forgetting words when I first started on it. But thankfully that did not last long.

Did you experience numb/tingling fingers?

I love what you said that everyone’s normal is different. So true!

[Johnny-One in reply to Hidden]

I got, and still get tingly fingers and toes. Sometimes the pins and needles are so bad it feels quite painful; not a hurting like a headache just an ache that you are so aware of it. If it is in your feet you want to stamp them to try and offer another sensation to your brain.

I do not get it so much now, but I get it regularly, say once or twice a month.

I do not know whether it is an age thing, but I have dreadful circulation issues too. Especially to my extremities, such as my fingers and toes. So much so I am wearing extra layers now to ensure I am keeping warm. Emma, my wife, sometimes reckons I feel like a corpse. She reckons a doctor would not know whether I was dead or alive, feeling my body temperature.

Like I say that could be me. Back to what is normal for one person is necessarily not normal for someone else.

My heart rate at rest runs at about 46-48 beats per minute, so that might explain it.

For all my medication I would not give up on Topiramate, nor Gabapentin. I have tried withdrawing from both at different times but have soon gone back on them. They are working for me.

[Fern27]

Well you probably don’t mind if you lose all your hair lol

[Fern27]

Oh and Gabapentin apparently puts weight on?

[Kaykaur]

I took them for about 12 months although they helped with my headaches the side effects were too severe. I tapered off them slowly over 4 weeks to prevent any adverse effects , this did work.

[Leylabell53]

I took Topiramate for about 2 years and hated it. It didn’t give me hair loss or itchy eyes, but it did affect my breathing, cause me to cough a lot, it caused a build up of mucus in my nose and throat so that I woke up in the middle of the night and had to blow my nose all the time and finally it gave me itchy skin. It’s no joke coughing all the time in the middle of a Covid pandemic! I took a very high dose, I think it was about 200mg a day and it didn’t improve my migraines in the long run. I couldn’t wait to come off it. I am awaiting my first delivery of Aimovig which I’ve been trying to get for several years and I’ve finally been granted.

[Fern27 in reply to Leylabell53]

Hi thank you for your reply. Yes that’s interesting I constantly have a blocked nose and itchy skin

It’s cuts down the migraines but I still get them

Often so want to come off it. I have just been

referred for Botox injections so we’ll see if that

Works so I can come of this drug altogether.

I will look up the other drug you mentioned.

[Leylabell53 in reply to Fern27]

I came off Topiramate gradually and have been put on Candesartan which is a blood pressure tablet. The blocked nose is definitely a side effect of Topiramate.However, Candesartan hasn’t worked either. I have also had Botox which didn’t work and hurt a lot!

I had to jump through all these hoops before I was granted Aimovig. It is a relatively new drug which you administer with an epipen. I am hoping this one will work for me as it has a good success rate, even with people like me who have stubborn chronic migraine.

We shall see! I’m prepared for disappointment too.

[Fern27]

Oh no all these drugs we have to try and to no avail! You’ve put me off the Botox now lol I did try Candesarten too. The thing is my Migraines are connected tomy Fibromyalgia so it’s difficult to know what to take it’s all trial and error!

I hope you get on with your new drug.

[Onthemove1971]

There are plenty of other preventive medications that help. Have you considered magnesium (glycnate) and also Feverfew.

Studies have shown people with migraines are deficient in.

I took topomaite and started to really suffer memory loss so I got off it quickly. I found I could not remember my passwords and ID.

Please please consider other preventive medications.

Please listen to the Headup Podcast, they are 2 UK migraine Specialist who have helped me so much.

Also search the group for old messages about this medication.

Good luck!

Good luck

[Christopherg in reply to Onthemove1971]

Good morning Can you advise how I access the head up podcast

Thank you so much

[Fern27 in reply to Onthemove1971]

Thanks for your reply. Yes I take quite a lot of supplements including magnesium but haven’t Tried Feverfew yet.

I’m trying Accupunture next week I have read

Books similar to Heads up. I’m not a fan of taking

Drugs because they are not without their side

Effects. But sometimes when the pain is so bad

You just have to give in.

[Onthemove1971 in reply to Fern27]

Curious.. what dose magnesium? And how often?

[Fern27 in reply to Onthemove1971]

Oh just 500mg daily but I see they’re Magnesium Citrate?

[Fern27 in reply to Fern27]

And Omega 3 fish oils and CQ10and a Multi Vit and Vit C just run out

of D lol

[Onthemove1971 in reply to Fern27]

Can I make a suggestion? Try taking Magnesium glycinate 3x a day. I have been told it needs to be high doses. I take it am lunch and pm. I was told nor more than 1600 in a day. The instructions on my bottle says 2x a day..

I also tried magnesium citrate and it didn't work.

My lunch dose helps me most. I feel a tinge of pain in my head right before I eat lunch and after I take my magnesium the pain goes away.

Good luck!

[Fern27]

Ok will try that thank you 🙏

[Onthemove1971 in reply to Fern27]

Let us know how it goes. Each migraine should get less painful.. then you will get less in a week.