Hello

[bediajr]

Hello all,

At this point, I don't know if I have epilepsy. However, I have had 3 seizures over the last couple of months. These were pretty violent seizures. The first one I fell down and hit my head, and it swelled up pretty bad. The most recent one dislocated both of my shoulders so badly that they had to operate on them to keep them in place. I am hoping that this is not a permanent thing, that I can get rid of them, but I thought I would start doing some research and connecting with others who have seizures. I am 34 years old, live in Arizona, and I am very fortunate to have a job that lets me work from home. I have so many questions. I can put them in this message, but if it would be better to post them in different strings or forums, I could do that. I am not very good at using forums, but I will give it a try.

-How do you find a good neurologist? I haven't liked the ones that I've been referred to. I've tried searching online, but not much success. Do you all know a place to go to get a decent neurologist?

-How likely is it to find a reason why I got the seizures? It appears that it is not common to get a specific reason for why you get seizures and anything as random as not getting enough sleep or being dehydrated can cause it.

-I have meditated a lot over the course of my life and have wondered if this might be what is causing the seizures. I have read some research that might suggest that meditation can cause this, so I am wondering if anyone on here has any experience with this. Prior to me getting the seizures, I had started to try to direct the energy in meditation towards my head, as I thought it might deal with feeling tired all the time (I have narcolepsy), and it was not long after I started doing this that I noticed the seizures. I have wondered if maybe I caused the seizures.

Thanks for any direction and feedback you can provide.

 

[reidflys]

Hi bediajr,
Welcome, glad your here.
I've heard that about meditation as well, you really may want to steer clear
of steam or hot yoga as well.
Sometimes getting the diagnosis of epilepsy takes awhile.
It took me three neurologist before I found the one right for me.
Don't feel bad if you feel like your doctor shopping, but it may be time to jump in and get one, I have violent seizures as well, and getting on the right meds, really helped me out.
I hope you love it here, it's really helped me out.

 

[jyearta]

Hi and welcome,

I sorry to hear of your seizures and your injuries.

I was diag. back in 1991 and have seen around 7 diff. dr.

I have been on about all the meds. out there but was able to take any except Dilantin and Clonazepam.

Trying to find the right Dr./Neur. and then the correct meds. that is right for you can be a pain, but this the only why to find what your body is needing to control your seiz.

Keeping a diary listing the seiz. ,the date, how long it lasted and any triggers you can think might be causing your seizures to come on. (I leaned this and SOOO much more on this forum.

 

[Nakamova]

Hi bediajr, welcome to CWE!

It can take some patience and persistence to find a "good" neurologist -- even ones with prestigious reputations don't always have good listening and communication skills. The main thing to keep in mind is that the doctor works for you -- if he isn't providing a beneficial service, then move on and find a doctor who will. An epileptologist tends to be better than a general neurologist, and a large teaching hospital or epielpsy center tends to have more resources to offer. You could start with some of the names on the list here: http://epilepsytalk.com/2011/05/03/...ologistsneurosurgeonsand-pediatric-doctors-2/

When looking for the reason of your epilepsy, it's important to make a distinction between primary and secondary causes. The primary cause would be something like a lesion or head trauma or genetic susceptibility that has to led to having a lowered seizure threshold. This can indeed be elusive -- and at some point irrelevant in terms of actual treatment.

A secondary cause is something like fatigue or dehydration or food sensitivity or hormones that may trigger seizures in someone with a lowered seizure threshold. Finding this secondary cause can definitely be worthwhile, since it can have a direct impact on reducing or controlling seizures. To that end, it's worthwhile to keep a seizure diary to look for connections or patterns, and to identify and avoid triggers. It's also important to be proactive in general with your health and lifestyle, even if you can't identify specific triggers.

Meditative states that are associated with producing certain brainwaves can be risky for some folks with lowered seizure thresholds. Those brainwaves tend to characterize transitional moments of consciousness (such as falling asleep, waking up, or daydreaming) when the brain is more likely to seize. But it varies widely from person to person. Some people with epilepsy benefit from the stress reduction that meditation can provide. You may be interested in trying neurofeedback treatment -- like meditation, it takes advantage of the innate plasticity of the brain to make qualitative improvements in well-being. It works by training the brain to produce beneficial brainwaves and suppress abnormal ones.

Best,
Nakamova