Topamax

[AlLeYkAt86-]

Neurologist recently put me on this to take morning and night to avoid migraines thus far no appreciable change and it's been a month. Anyone else had luck with this drug?

[Onthemove1971]

While this medication on a high dose helped "a little". It has left me with permanent memory loss.. it is hard for me to remember passwords and simple game instructions.

I would warn anyone from using this medication due to the long term consequences. There are better options.

[Slim66 in reply to Onthemove1971]

Hi, can you tell me about the better options as my neurologist has said I’ve exhausted all preventatives and he may have missed something. I too had/still have side effects from topiramate but I’ve also been advised that memory loss is also a side effect of chronic migraine. Many thanks in advance

[cat85 in reply to Slim66]

Hi, sounds like I went down a similar path. Topamax is the only preventative that I have consistently been on while trying a second on top as my migraines are so bad. I haven’t been off it for years and have been recommended against doing so but after trying all the other options including an extremely high dose of gabapentin this is the only one that I personally would recommend. I currently take 100mg BD. It’s not great re the memory loss but you are right chronic migraines do mess with the memory and this is quite a good side effect compared with some of the others that I experienced when trialling other preventatives. I work in hospital pharmacy and every drug carries side of effects, it’s about weighing up the benefits to your life vs what you see as a negative side effect that you cannot live with. The small memory loss I can.

The only other option after trialling all preventatives is Botox, which I now get as well but I still cannot come off the topamax. This is not pleasant either. My last session was 36injections, I was wiped for a few days afterwards and it definitely triggers my migraines. Neuro and chronic pain said that I’ll not be able to come off the topamax as it’s the one preventative that has had a slightly beneficial effect.

Sorry for all the info but I hope it helps somehow and if you have any questions please just ask.

[Slim66 in reply to cat85]

Thank you for your time. Botox is the only preventative I haven’t tried as I cannot get it on the nhs with my dr here in the uk and cannot afford the £700+ every 3/4 months. Have you suffered hair loss with Topamax? All the best to you and I hope you’ll be migraine free sooner rather than later!

[cat85 in reply to Slim66]

I did actually suffer from hair loss at the beginning, it has settled a bit now but I have quite thin hair as it is. I am quite lucky as it is on NHS I’m Northern Ireland although you do have to wait an awful long time and fight through processes to get. I do believe that the topamax is keeping me level between treatments

[Onthemove1971 in reply to Slim66]

If I had the answer to this I would be a billionaire.. ha ha.. each person has such individual needs but here is what I have done and learned and maybe some of it can help you. This journey is not a quick fix but should help a lot.

1. Please go tomigraineworldsummit.com/

This is a site run by people who have struggled with migraines for many years. There are videos that help you understand how to deal with many aspects of migraines.

2. Listen to you body... when you start to get a migraine, wonder why.. ask yourself, did I sleep enough ( if not take a nap) did I drink enough water ( if not drink a lot), did I eat enough in the last meal ( if not snack on almonds or things that help)

3. Treat all symptoms of other than your migraine... do you have back and neck pain, put ice on it or take a hot bath with Epsom salts.

4. Go see a HEADACE Specialist, they are sometimes Neurologist, all they do is treat migraines. They might see if you can benefit from things like Neuro transmitters?

5. Stop taking any over the counter drug ( I know but trust me you are giving your self rebound headaces) also don't take to many Triptans ( Imitrix...)

6. Try things like Feverfew and magnesium glycinate ( this is harder to find and more expensive. Take them exactly as they say.

7. Last if your treatment plan is not stopping them you dont have the right treatment plan

Ok that's enough for now.. our bodies are sensitive and need special attention.. so many things to think about, sunlight, perfume/cologne.

Hope this helps... let me know if I can help

[Slim66 in reply to Onthemove1971]

Thank you for your reply 😁

[Onthemove1971 in reply to Slim66]

I hope some of this helps you..

[Slim66 in reply to Onthemove1971]

Thanks but it’s already all that I do and still I have 23+ a month. Was hoping for some relief post menopause but maybe it’s too soon yet to see a difference

[Onthemove1971 in reply to Slim66]

Me too..

Do you inject your triptans? I get great relief from injectable medications more than oral.

Botox and Amigen ( sp?) Are next on my list.

Take care

[Slim66 in reply to Onthemove1971]

I take naratriptan orally if I catch onset in time but if I’ve woken with one I inject with sumatriptan. I’m waiting for Amigen to be available to me too. All the very best to you!

[Onthemove1971 in reply to Slim66]

Thanks, I am also going to try Amigen. Let me know if it helps you.

Take care

[Onthemove1971 in reply to Slim66]

I had another thought.. when I go to the Emergenct room they give me a cocktail by IV. Clearly you would.not have these injected but they use 4 different medications. They use: anti-nausea drug, anti-histamine and anti-inflammatory, triptan and of use fluids. You could consider taking these together, most yo uh can get over the counter.

Also I keep a roll on peppermint in my bag and put it in my hand and smell it

I use this when Inam.in an environment with really strong perfume.

Hope these ideas help.

[Slim66 in reply to Onthemove1971]

Thank you, I’m lucky that I only get nauseous or vomit maybe once/twice a year with migraine. I take a daily antihistamine and yes I hear you about the fluids, maybe something like dioralyte would be good to top up on minerals etc.

[cat85 in reply to Slim66]

I have enclosed the new NICE clinical guidelines for migraines. This has just been updated.

Prophylactic treatment

Discuss the benefits and risks of prophylactic treatment for migraine with the person, taking into account the person's preference, comorbidities, risk of adverse events and the impact of the headache on their quality of life.

Offer topiramate or propranolol1 for the prophylactic treatment of migraine according to the person's preference, comorbidities and risk of adverse events. Advise women and girls of childbearing potential that topiramate is associated with a risk of fetal malformations and can impair the effectiveness of hormonal contraceptives. Ensure they are offered suitable contraception if needed.

For further information, see what NICE says on contraception.

Consider amitriptyline2 for the prophylactic treatment of migraine according to the person's preference, comorbidities and risk of adverse events.

Do not offer gabapentin for the prophylactic treatment of migraine.

If both topiramate and propranolol1 are unsuitable or ineffective, consider a course of up to 10 sessions of acupuncture over 5–8 weeks according to the person's preference, comorbidities and risk of adverse events.

For people who are already having treatment with another form of prophylaxis and whose migraine is well controlled, continue the current treatment as required.

Review the need for continuing migraine prophylaxis 6 months after the start of prophylactic treatment.

Advise people with migraine that riboflavin (400 mg3 once a day) may be effective in reducing migraine frequency and intensity for some people.

[designer111]

Didn't work for me and left me an emotional and anxious mess for the first 2 months.

[herbmonster]

I started taking it back in 2014 and to start with, yes I have to admit there were side effects but these were more manageable than the chronic migraines I was experiencing.

Fast forward 2 years and it was not working at the dosage I was on so it was increased, and it offered me relief for about another 12 months. Then I was admired and had VM again (back in 2014 I had VM and other infections which resulted in me being in hospital for a while including a stay in ICU, and the neurologist couldn't rule out the chronic migraines being linked to this)

Since the second bout of VM the topamax has ceased to work. I have tried other preventative medication but nothing has worked. I am under the neurologist and awaiting an appointment at the pain clinic with a possibility of BOTOX injections.

I am currently literally bed bound 3 days a week on a good week due to the amount of migraines I have.

[cat85 in reply to herbmonster]

Hopefully you get the Botox. I was in and out of hospital. After being on the waiting list for Botox for over 2 years I’ve now had 2 sessions, still taking topamax but it’s definitely helping. Wouldn’t say less frequently but the pain has reduced which is has been great and something I can cope a lot better with

[herbmonster in reply to cat85]

Thanks, fingers crossed. Have to say I am abit wary of it but I have tried all the preventative drugs and I don't tolerate them, something my consultant warned me about. The last 14 weeks especially have been particularly bad as I have not been able to work. I would say I have "managed" as I would say due to lifestyle change I function as best as I can on a day to day way with fantastic support off my husband and family but like I say for the past few months the balance has tipped too much so I am hoping something can at least help with the pain. It's all the add on problems" as well now. But I will not let it beat me.

[AlLeYkAt86-]

Jesus I'm sorry to everyone for their side effects and no effects.

[TazCat]

I have been taking Topamax (25mg 2x a day) for a little over a month and it has been working well for me. I have been experiencing some of the side effects (pins and needles numbness/tingling like sensation that comes and goes in toes and fingertips and altered taste for some things (can no longer drink soda) but all trump the decrease in migraines - have only had one since starting the med and the severity of the migraine was significantly less and shorter lasting (4 hours) than prior to starting the medication). Based on my experience so far, I would recommend it!

[AlLeYkAt86- in reply to TazCat]

Why the soda?

[TazCat in reply to AlLeYkAt86-]

It alters the taste - they all taste horrible (I think it's the carbonation?). I haven't noticed any other altered tastes but do have some nausea which is getting better. It helps to make sure I drink plenty of water and eat when I take the medication. Hope that helps!

[Slim66 in reply to TazCat]

Yes all carbonated drinks now taste bitter 😩

[Shawnie]

Didn't work for me, due to having to stop after a few months as I was becoming severely depressed..... however it did decrease number of migraine. I imagine it would be beneficial if side effects are minimal for you.

[Midhurst]

Unfortunately topiromate made me feel suicidal!! So it didn't work for me. Thank you for the nice guidelines who ever posted those.

At present I am on 10mg propranol and 10 mg of amitriptyline. I have just started this new regime. My neroloist suggested two meds. Going better so far having less migraines.

Hope you find something that works for you.

[bobbybobb]

It didn't work for me at first, they kept increasing the dose. The migraine is fairly well managed now, I take sumatriptim when I need to along side it. I have problems with memory. I recently asked my GP about coming off it but he said it was very good and didn't seem to want to discuss it any further.

[milew]

Topirimate was like my worst nightmare coming true - see my previous posts about it, e.g. healthunlocked.com/migraine... . Definitely would never want to wish that on anyone.

[Onthemove1971 in reply to milew]

Ditto.. I will never be the same.