Tapering off Topiramate

[Fedup6]

I have been on this medication since September '20 and eventually ended up on a dose of 200mg day which I reached in April '21. I am not happy about the side effects and am now cautiously tapering off the drug under my GP's supervision by reducing the amount by 25mg a week. I am 3 weeks in but am waking each day with a headache that seems to get worse throughout the day. I'm not sure what to expect and if this is a normal part or withdrawal or if I'm going to have to give in and resort to using it again. Has anyone experience of coming of topiramate?

[Onthemove1971]

Are you taking some other preventive? Have you considered taking magnesium? Studies show people who have migraine do not take in enough magnesium. This has really helped me a lot. I also took Topiramate and had a bad experience. I take Magnesium Glycinate 3x a day at 400mg. I can take up to 1600mg a day. I also take Feverfew which was approved by the AMA ( American Medical Association) to help with migraines.

I am also not sure how you are treating your migraines and what other medications you are using.

Good luck, it would be nice if you start something quickly the help you. It takes about 3 months for the magnesium to help.

[Fedup6 in reply to Onthemove1971]

Thank you. I do take magnesium - but probably not enough so will look into this further. I tried feverfew but found it upset my stomach. I don't take any other medication but sumatriptan when needed.

[Onthemove1971 in reply to Fedup6]

Great you have been taking Magnesium there are many types. If you have not seen a difference, I would recommend increasing it by dose and number of times you take it. My lunch dose always helps me the most. If you increase and don't see a dramatic difference they switching to magnesium glycinate. There are a number to try. Also, have you considered tman injection Imitrix? I take both. It has also helped a lot.

Sounds scary but it's just like an Epi pen. One tube and you push and hold. I can say with in less than 5 min. I can feel the medication help. I may use this about every 3 months depending on how bad my headaches are.

A few other things.. I drink a can of cold Pepsi with 2 over the counter migraine pills to start. I may also drink hot peppermint tea. Put ice on my neck.

In addition I make sure I am over drinking water to stay hydrated, I find when I don't eat enough protein at each meal and skip water the headaces really come on.

Hope these tips help.

[Wrexham16]

HiI have not come off Topirimate but I have experience of tapering off other drugs. I seem to have blotted out the name of the one which was an absolute nightmare. The side effects were terrible but I found a blog which encouraged people to stick with it. Lots of people couldn't cope and went back on the drug but I stuck to the advice that if you don't persevere what are your options? If you give in and go back to the Topirimate are you going to stay on it forever? And if not you'll just have to go through this again at a later date. Do try anything you think might mitigate it but don't give up

[Fedup6 in reply to Wrexham16]

Thank you, that makes a lot of sense and what I've been thinking really. I don't want to give in at such an early stage and was really hoping to find someone who said that it was normal to feel ropey and 'headachy' whilst finding your equilibrium coming off topiramate! I'll certainly stick with it for a decent period of time - as you say, if I do go back on them at some time or another when I try again it'll be back to square one.

[WelshUnderdog]

I’m currently going through the same as you but my GP under the guidance of the Neurologist has put me on Candesartan so as I’ve been coming off Topiramate I’ve been increasing my Candesartan dosage. I have had an increase in headaches and just felt really rubbish, struggling to sleep but apparently it’s normal when changing medications and coming off Topiramate.

I had to come off Topiramate due to the side effects, it was causing me stomach issues and hair loss. I haven’t noticed much of a change yet as I am still on 100mg a day but I’m hoping it will make a difference! I’ll keep my fingers crossed that you get the results you’re looking for too!

[Jelbea in reply to WelshUnderdog]

Hi Welsh Underdog - Candesartan can make RLS worse. I don't know if this applies to you but I thought I would mention it.

[Jelbea in reply to WelshUnderdog]

Ignore post from me. I thought I was on Restless Legs site. My mistake! For us RLS sufferers we need to avoid many drugs which make us suffer even more.

[Fedup6 in reply to WelshUnderdog]

I hope that the changes in your medication work out for the best and your headaches settle down! Thank you for your best wishes - it is a very tricky thing managing new drug successfully!

[designer111]

Sorry to hear that. I found it awful stuff and it made no difference so I went cold turkey and just stopped taking it. No side effects by doing that for me.

[Fedup6 in reply to designer111]

It is great you haven't suffered any side effects - did you opt for an alternative medication? The GPs urge caution when coming off because it acts upon the nervous system. Out of curiosity, if you don't mind me asking, how long were you taking it and how much daily? I ask this as I wonder if this makes a difference?

[designer111 in reply to Fedup6]

I took it for 2 moths and that was it for me. Me me anxious (Im not this person) and awful. So I came off of it as was having trouble getting to docs for more and I thought as it wasnt working for me, I would just stop it. Didn;t feel anything. Cant remeber what dosage I took. I didnt take anything else for the rest of the year. Nothing worked for me so far.

[Leelee1957]

Hi, I had just come off off Topamax, it took me several months. I had probably been off of it for 4 weeks and started waking with migraine feeling headaches every morning. I was also getting over a cold so my Dr put me on antibiotic because he really didn’t want me back on Topamax. It did not go away. I was very cautious with over the counter medications in fear of rebound headaches and imitrex was not working. So I went back on Topamax slowly. After 15 days this is the first morning without headache. I am 64 and this is was my 3rd attempt to come off of Topamax.

[Fedup6]

Thank you for your reply. I appreciate your candour - and I'm sorry that despite the effort you've had to resort to continuing with the drug. I must say, I'm afraid this is going to be the case for me. I'm now about a month in and half the dose I was taking (now at 100mg). The same as you, already I'm waking up almost every day with a migraine like headache and am anxious not to rely upon over the counter painkillers - so, I'm spending a significant amount of time very uncomfortable. It is very frustrating. I'm sure the headaches are worse now than before I started the medication in the first place! It seems to be a vicious circle. How long have you been taking Topomax for and did you get any particular side effects?

[Leelee1957 in reply to Fedup6]

Sorry this is late, I didn’t see it. I was probably on Topamax for about 10 years. My side effects that bother me the most are the words that don’t always come to me immediately. So frustrating! I am now on my full dose, 100 mg, and am only getting a slight headache in morning occasionally. It has been about 2 weeks now on full dose so hopefully it will be gone completely. I will try again but will give it some time. I hope you are doing well. Hearing people struggling with migraines breaks my heart. Find a Dr you can rely on.

[K7227]

Hi, how are you getting on with coming off the topiramate? I’ve only just seen your post. I’m also coming off topiramate too. I’ve been on it about 10 months for migraines- it seemed to help initially but then actually looks like it has made them worse in the end at the higher doses. Also really unpleasant side effects particularly brain fog/ not remembering words as well as all the tingling/unpleasant sensations and odd lights in vision. Really looking forward to stopping it as really have felt dreadful and neurologist thinks this might be responsible for a lot of that. It’s going to take about another 5 weeks for me to come off. Have you had any withdrawal effects apart from headache? I have had some anxiety/low mood and dizziness - although not so bad with the latest dose reduction….

[Fedup6 in reply to K7227]

Hi, sorry not to reply sooner. Just noticed your response. I am STILL tapering but going very slowly. The pharmacist said no reason to rush so I'm dropping 25mg every 3 weeks. This means that I will have reduced to from 200mg a day to 25mg this week. In general, I would feel better for not being on the medication and my sleep is better on the whole. I think topiramate contributed to making me feel some anxiety and depression which I hadn't really recognised. I feel more like 'my old self'. That said, my headaches/headpain is more present. I seem to have more of them and I'm aware they are there a large amount of the time. However, I think I would like to control this with daily medication for the time being and see how things go. By now you should have more or less have come off the topiramate. How are you getting on now? I hope you are not suffering from any major side effects.