I would never have let it go this far. As RandySherman said, reach out to your epilepsy foundation.
July 23
I would get a hold of your local Epilepsy Foundation and find out if there are Epileptologists near you.
Or talk to your primary Dr. see if he / she can refer you to a neurologist or Epileptologist .
July 22
Going 7 years without seeing a neurologist is a long time, and it's completely understandable to feel unsure about what to do. The good news is there are some practical steps that can help bridge the gap while working toward getting back into care.
Here's what can help in the meantime:
- Track your seizures — Keep a log of Show Full Answer
Going 7 years without seeing a neurologist is a long time, and it's completely understandable to feel unsure about what to do. The good news is there are some practical steps that can help bridge the gap while working toward getting back into care.
Here's what can help in the meantime:
- Track your seizures — Keep a log of when seizures happen, how long they last, and any possible triggers. This will be incredibly valuable when you do see a doctor.
- Stick to your medications — If you're on anti-seizure medication, try not to miss doses. A pill organizer or a medication tracking app can help with consistency.
- Identify your triggers — Common triggers include lack of sleep, stress, alcohol, and missed medications. Knowing yours can help reduce seizure frequency.
- Have a seizure action plan — Make sure the people around you know what to do if a seizure happens.
- Reach out to the Epilepsy Foundation — Their helpline (1-800-332-1000) can connect you with local resources and support, even if you don't currently have a neurologist. Getting back to a neurologist should be a priority. If cost or access is a barrier, a primary care doctor can be a great starting point — they can help with referrals and may be able to manage care in the short term while you work toward seeing a specialist.
It's also worth knowing that keeping your neurology team updated on any changes in your seizures — including how often they happen — is one of the most important things you can do for long-term health and quality of life.
July 22
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