10 tips for survival - from an epileptic

jojobelle

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Top Tips for Coping with Epilepsy:-

1. Remember to take your medication - don’t overdose or underdose – use a ‘Pill Mill’. Overdose is just as bad as forgetting!

2. Take your medication at the same times each day. Take with water to ensure they are ingested quicker. Set an alarm on your phone to help you remember your x2 times. Don’t panic if the very rare time you forget and only remember a couple or few hours later. Take and relax.

3. Don’t mix generic or brand names. Choose generic (e.g. Lamotrigine and Levetricetam) for both if you are on more than 1 type of medication OR ‘brand’ for both (e.g. Lamictal and Keppra.) Don’t have one brand’ and one generic. Only in absolute dire straits should you veer from this (e.g. if you run out of medication and only have either brand or generic, from before you knew this advice, have lost a pack/box.) In this case, it would be better than taking no tablets at all. Rectify ASAP by getting to your GP/Pharmacy.

4. Tell your employers. Tell friends. Tell family members. Its better they know than not, especially if you have ‘auras’ and absences. They can make allowances and know therefore that you aren’t being rude if you lose concentration for a second or two.

5. Wear an identity band. Find them online-they are cheap and colourful. Wear clearly, including on top of thick coats and jumpers. If you lose it, buy another ASAP!

6. Make an identity card for your bag/purse. Put the vitals on there – Name – ‘Epileptic’, Date Of Birth, Medication names and dosage (times taken too, if you like), Any other allergies (e.g. penicillin), Emergency Contact Name – Partner/Best Friend/Parent – Name and Phone Number. Laminate it and don’t lose it!

7. Don’t be ashamed of having epilepsy. If friends or acquaintances engage you in conversation about it, perhaps use the opportunity to calmly and politely diminish stigma surrounding epilepsy (e.g. it is linked to being of low intelligence, it is linked to mental illness, its rare etc)

8. Take advantage of and get involved in local groups, meetings, socials, coffee mornings, befriending, one-to-ones. Talking to and listening to others ‘in the same boat’ is well worth it – all for the price of a coffee! Its cheaper than anything else!

9. Keep your Neurologist appointments. Draw up a list of questions. Take them with you and have out in front of you – show you mean business and wont be dismissed easily. Also helps if you have memory problems!
Stay in touch with your Adult Epilepsy Nurse. You can pose any minor questions or have anything clarified that you are unsure or worried about in between Neurologist appointments.

And finally…

10. If you do have a bad run of seizures (especially out of the blue) allow yourself time to recover physically and psychologically. Its draining. If you feel sad or angry or disappointed then be these things, its ok and its necessary.

You may not be able to forget a bad run or series of events but you can start or try to get over it/them. Talk about it to the people who love you and to the professionals and then try to move on. Be positive!!!!
 

Nakamova

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Great list jojobelle.

I would add to #3 that some people have problems with the generic forms of the meds. It's worth discussing this with your neurologist. The neurologist may need to specify "no substitutions" on your pharmacy order to ensure that you received the brand. And you may have to be vigilant about making sure that's what you're getting, even with the neuro's specification. If you are switching to the generic (usually for insurance reasons), be aware of the potential for problems and pay attention to how you are feeling. You might even want to ask your pharmacy to use the same manufacturer of the generic with each order (if possible), to minimize any issues with variations in the pills.
 

Cint

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Adding to what Nakamova said, adding to #5 & 6, I prefer MedicAlert ID's bands or bracelets. They even make necklaces. And they send you cards with all the medical info (medications, illnesses) plus emergency info; drs., who to call-family, friends, etc.

http://www.medicalert.org/spring
 

chop456

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As a mother trying to help her daughter through the teens years and a fairly new diagnosis of epilepsy, I really appreciate this list. I wish I could encourage my daughter to feel more comfortable with #7 and 8. I know, in time, she will get there. Thank you for these thoughts. It helps me!
 

jojobelle

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Thanks Nakamova
I will do that when prescription request time comes round again.
It would save time and stress. 'No substitutions'
Thanks!
 
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