PREGABALIN

[lgd333]

I have just been put on Pregabalin, but regret do not know much about this medication. Has anyone have any idea of possible side effects, and to what extent this has helped them with focal seizures?

I was on Oxcarbazepine for 8 weeks only but ended up in the hospital last week with hyponatremia (low sodium) due to the medication. At the moment I am on 25mg. Pregabalin titrating to 75mg. slowly in 2 weeks or so. Phenytoin is the other medication I am currently taking.

Thank you. Looking forward to hearing some positive results.

[Adlon57]

I have osteoarthritis, but was put on Pregabalin, for my epilepsy🙄, it affected my joints, I went of it sharpish! I do not have happy memories of it, but my conditions are different to yours!

[lgd333 in reply to Adlon57]

Thank you. I have had epilepsy for 48 years now. Will keep an eye out for painful joints.

[Adlon57 in reply to lgd333]

52 years with Juvenile Myoclonic Epilepsy and Schwannomatosis [Neurofibromatosis 3]Good Luck!

👍

[lgd333 in reply to Adlon57]

Thank you. Stay as healthy as possible.

[EpilepsyAction1 Partner Epilepsy Action]

Hi there

I'm sorry to hear you've been in hospital. I hope you find that Pregabalin suits you better than Oxcarbazipine.

I'm linking you to our information about epilepsy medicines. You can use the links there you can look up the different medicines in the British National Formulary. This gives you information about side effects and interactions: epilepsy.org.uk/info/treatm...

It can be really helpful to share support and information so I hope you hear from others on this platform. You might be interested to know we have other online services as well.

Here are the links:

forum.epilepsy.org.uk/

facebook.com/epilepsyaction

instagram.com/epilepsyaction/

twitter.com/epilepsyaction

Regards

Mags

Epilepsy Action Helpline Team.

[lgd333 in reply to EpilepsyAction1]

Thank you for all the links, which are greatly appreciated. I started 50mg today... So far so good.

[car67]

Hi

I am starting mine too , tomorrow ,with same dose and titration. Unfortunately everything I have read doesn’t look good but everyone different .and hopefully it works out. I have not had much luck recently with my meds. I am coming of perampanel as had too many side effects.

Good luck, I hope it works for us both. I am also taking locasomide, briveracitem and lorazepam.

[lgd333 in reply to car67]

All the best on Pregabalin. I am on Phenytoin at 200mg. daily with the Pregabalin and have now reached 100mg. twice daily (Pregabalin). I managed to go 12 days with no focal seizures, then had 2 days of clusters. I have managed to go another 4 days without. The only side effects I am having so far are tiredness and the odd irritability. Let me know how you do on it.

[car67]

Thank you for your reply. I will def let you know. Fingers crossed 🤞

[car67]

Hi my dose is now at 50mg am and 75pm unfortunately I’m not doing well, I have had lots of seizures in clusters and have found they are lasting longer in time wise.I am also very irritable , I seem to have the irritability’s ,unfortunately I have been through about 9 different medication changes not much left now, I am considering surgery although at 51 it frightens me. I was always adamant I wouldn’t go down this road but I am so fed up with the seizures and the loss of my life before epilepsy.

[lgd333 in reply to car67]

I am so sorry to hear that the medication is not working for you. I found that when on a lower dosage, I also had more seizures until the Epilepsy Nurse increased the dosage to 100mg. twice daily. This seems to be going fairly well at the moment and I have managed to go about 12 days with no focal seizures. I am also on low sodium medication which might be helping the issue also. If not suitable for you, perhaps consider surgery. I know it is frightening but if it was me, I would go for it. I am so tired of all the medication changes also.

[car67 in reply to lgd333]

I am so happy it’s going well for you, fingers crossed , 12 days amazing I’m well chuffed for you, stay positive and good luck, stay in touch 🙂I am discussing option of surgery with my family, yes very frightening thought but I will do some extensive research before I make my decision , take care 🙂

[lgd333]

Hang in there! Thinking of you as I know it's a hard decision. I had brain aneurysm surgery in 2019 and am so grateful I did.

[car67]

Hi thank you for your message

My seizures are bad, I had a bad one yesterday at work, so currently recovering from my emergency medication. I am waiting until I reach my maximum dosage so will hopefully see an improvement.

I am pleased that your surgery went well, I have. Cavernoma on my left temporal lobe, it’s a cluster of abnormal blood cells that needs to be removed, this is what caused my epilepsy , I am petrified of the surgery and just can’t make the decision on what to do .

Stay well, really pleased 😀 your doing well. X

[lgd333]

Try and stay positive. Keep me posted on your progress.

[car67]

Will do