Epilepsy Foundation

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Speak Up Montana!

This is the home page for epilepsy advocates in Montana! Join us in our effort to find a cure, stop discrimination and improve access to care and treatment.

Members: 8
Latest Activity: Mar 5

Discussion Forum

Wow

Started by Erica Barker. Last reply by Tammi Zavardino Feb 14. 1 Reply

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Comment by Tammi Zavardino on March 5, 2014 at 12:20am

Mike hope you get everything worked out because it is very important for you to get the right meds and understand these things so you no longer have problems. I wish you the best and am here if you need to talk.

Comment by Mike Stapp on March 3, 2014 at 7:14pm

Thanks for the reply Tammi and I appreciate the support. I will remember to check the meds. I go see the Neurologist tomorrow and hope to get things straight again.

Comment by Tammi Zavardino on February 26, 2014 at 11:31pm

Mike since I never get any indications as to when a seizure is going to happen my doctor suggested I give the magnets to different friends who hang around me to use if I have a problem. I have trouble when it is cold and noticed when a man who had been smoking quite a bit sat down beside me later I started having a burning throat and now have a cold and had some trouble coughing so much I couldn't breathe. One thing I have tried to tell everyone is check your medications and when they need refilled make sure they are the same as the ones you had before if they were working for you because different generic medications are not always the same and may cause problems even though the pharmacy will tell you they are its not true. Be careful with the magnet because that surgery as you know is not fun and running the battery down means you will have to have it replaced sooner than you would have. I understand your frustrations believe me we all have them and were here to talk to when you need to because we understand.

Comment by Mike Stapp on February 26, 2014 at 2:56pm

I am back, sorry that I didn't respond to your comment before now. I have had a rough time over the last week and I hope that what I am typing makes sense. Not doing well today, my little girl had strep throat and I feel like I have it. That's all I need a temperature to cause more seizures. I think that the meds haven't worked as well as they should for the last week. I never leave home without the magnet for the VNS and I think that I have run the battery down as much as I have used the VNS lately. :) I have struggled with the reading, speech and comprehension problems lately and they do get annoying. I go see the Doc next week and maybe I will get another tune-up. I am fighting with the VA over the seizure problems and they are little or no help, more people who don't understand, great.

Comment by Tammi Zavardino on February 18, 2014 at 11:28pm

Some people can feel it go off but I never have and some will have trouble talking when it goes off but that doesn't affect me either and the best part is I no longer have grand mal seizures and am pretty much seizure free. But the whole concept of the mechinism is to carry a magnet with you and swipe the device when you feel a seizure coming on but since I never get any auras I cannot do that. They have made many adjustments since it first came out and it is much better now than when they first started working with it so I am happy I did it except for having to go in every five years to have the batteries changed. Yes it works for almost everyone but there are a few that cannot use it and it is just like medicines its just a chance you have to take or not take to become seizure free.

Comment by Erica Barker on February 18, 2014 at 7:42pm

When I had the VNS it worked great. But I got a Staph infection because my skin was too sensitive to the VNS material. I hope this doesn't happen to anyone else.

Comment by Mike Stapp on February 18, 2014 at 2:46pm

It's good to know that the VNS is working for you. You are the first person that I have talked to that has the VNS. I am glad that it works for you. Do you have any side effects?

Comment by Tammi Zavardino on February 17, 2014 at 10:45pm

Mike that is a lot to deal with I have never had any problems with lights or sounds but some smells can make me have a migraine headache and I have to wear transition lenses if I go out in the sun because that will cause migraine headaches if I don't. The cold is worse than the heat for me and have always had more trouble with that. I never get the auras but don't have much seizure activity anymore since they did the vns surgery so feels like a blessing to me. I hope things go better for you.

Comment by Mike Stapp on February 16, 2014 at 1:26pm

The seizures are triggered by many different things, light, smells, sounds. I have what feels like an electric shock that runs through my head when different sounds or vibrations occur. I have tingling in my scalp, sometimes one ear will turn red and hot. I assume this is due to the elevated blood pressure that will occur with different seizures.

Comment by Mike Stapp on February 16, 2014 at 1:22pm

I do have a job with the state. It is difficult because of the reading and comprehension issues. I was diagnosed with seizures about 8 or 9 years ago while living in Ga. It took 20 plus years to diagnose the problem and they still don't understand all of the problems associated with my seizure types. I have been to every type of Doctor ologist, as I refer to them, that one can imagine. Like others I have the aura and then as the seizure begins the breathing and heart troubles begin, sometimes I can't speak or have trouble with words, this is probably the most annoying problem. I have the icepick headaches if the seizures weren't enough. I have OCD, depression, trembling or jerking in different parts of the body, both short and long term memory loss. Now that I know what the seizures are like I can now tell you when and where I was at when the first occurred.

 

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