Need A HUGE Amount of Advice

[britsbff]

My best friend in the world has Epilepsy. She is currently on Dilantin, Lamictal, and Vimpat. Even though she is on all of these meds (and I know for a fact she is taking them because she lives with me and I am quite a bit older than she is and tend to mother her and ask constantly and watch to see if she takes them) she is still having seizures.

The seizures are tonic clonic and also absence in nature. Her neurologist is ... ok, I will behave and just say he is not doing his job. She has had 6 tonic clonic seizures in the past 6 days. Two of these were today. These seizures are not short. Sometimes they can last up to 25 minutes in length with her actively seizing 4 or 5 times for a minute or longer. Sometimes she will wake up, talk, say she feels ok, start to get up, and it starts again.

The absence seizures happen quite a few times a day. These happen every single day. She is 20 years old and was diagnosed when she was 17 when she was diagnosed.

We called an ambulance the other night and they did nothing at the hospital besides tell us to get her in with her neuro right away. Right away to them is next Thursday.
We call them everyday about the seizures. They are sending out a paper for bloodwork. That is their solution.

I am calling epileptologists in Pittsburgh starting 1st thing Monday. I have had enough. I hate seeing my best friend in pain. She cries every single day. She wants it to stop but she is refusing to go by ambulance to Pittsburgh but if this continues, I am gonna throw her butt in an ambulance when she is seizing. When she awakens she can refuse treatment and we will start over again. We have small community hospitals and they are not equipped to deal with this.

Please help... I do not know where to turn... I hurt because she is hurting... I love her and I don't want to see her hurt by this anymore. I wish I had a wand to wave that would make her feel better. I know this is going to take time but I hope we find a proactive doctor.

[Porkette]

Hi britsbff,

I'm sorry to hear about your friend. I've had absence seizures for 39 yrs. and complex partial seizures also. A lot of your friend seizures could be happening do to hormones changing each month. You are playing it smart taking her
to an Epileptologist. I saw many neurologists over the yrs. and I finally went to any Epileptologist at an Epilepsy Center and they found out what was causing my seizures, they did DNA tests on me to find out what seizure meds (AED's)
would work the best on me with the least side effect, and they finally did brain surgery on me to help reduce my seizures. Your friend might have to be admitted into the hospital and have some tests done along with an observation by the Dr. to see
what's going on. Tell your friend to start taking Vitamin B12 1000 mcg. once a day. Stay away from nutra sweet (aspartame) because that can cause more electrical activity in the brain and trigger seizures and she might want to start cutting back on
the starch foods and carbohydrates and start eating foods high in fat. This is known as the ketogenic diet and it builds ketones in a persons system and the keytones reduce/stop the seizures. The diet has been out since 1927 and if your friend is interested
she can buy the book titled "The Epilepsy Diet Treatment" by Dr. John Freeman. Tell your friend to take her temperature 3 times a day at the same time and each time after she's had a seizures. Also have her write down how many times a day she has yawned along
with her temperature readings. They have found that yawning cools the brain and in turn this calms the neurons down in the brain so they won't fire up and lead into a seizure. Also tell your friend to put a cold wash cloth on her face and neck 3 times a day or more
this will calm the neurons down and stop/reduce the seizures. I learned about this last yr. when I was in a medical study and it worked great for me. If your friend isn't doing it tell her to get a calendar and write down each time she has a seizure write down the type of
seizure and what time of day or night the seizure happened. Also tell her to write down when she starts ands stops her monthly cycle or if there's a low pressure in the weather. By doing all this the Dr. may see a patten in her seizures and tell if it's related to hormones,
stress or lack of sleep. These are the 3 main things that can trigger seizures for a woman as well as being sick. If your friend uses a cell phone she may be cell phone sensitive like I am and this will trigger seizures for some people. I can't be near anyone using a cell phone
or the seizures start for me one right after the other. Here's wishing you and your friend the best of luck and May God Bless You Both!

Sue

[Tattoo2]

Hello and thank you for being such a good friend and caring about her. She is very lucky to have you and for you to know as much as you do about her seizures. That will be very helpful to the epileptologist when she gets there. If she wants it to go away she has to get herself to where she can receive better care specific to her particular case. It will not go away but will get worse over time. The length of some of the seizures you describe are much too long. Get her PCP to do the referral as her neuro will not want to refer her and will want to continue to fed her pills! Once one medication fails to stop the seizures, there is less than a 15% chance that any med ever will. We have better meds now but those are the evidence based statistics. she needs a comprehensive Center that has telemetry in the EMU Univ of Pittsburgh has that. Ask at U Penn about that. I didn't see it on their website. If the Center also does the ketogenic diet, that is a good thing too. More comprehensive. The telemetry/closed circuit TV with someone at the desk watching in real time in the EMU is a must though!! This is a link to the National Association of Epilepsy Centers. It has guidelines that a Center has to meet to be a member. I also found the ones in Pa since mentioned that state. Cleveland Clinic is great! I had my surgery at Medical College of Georgia in Augusta, Ga 13 years ago, Great decision! Have not lost consciousness since! That combo of meds sounds like he gave her a little of several types in order to maybe have one that worked, Two are for complex partials and she may actually has complex partial with secondarily generalized seizures which would look like tonic clonic. Ask her to visit here and read. She has to accept that she has this and is the one who has to learn how to live the best life she can regardless of it! Good luck and keep us posted.Tattoo


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[tigerchef1969]

Wow! Sorry To read this!

Hi, Having had a Traumatic Brain Injury, Epilepsy, depression and Addiction problems! Besides everything I mentioned except for my Alcholism I wanted help for right away and did not ignore any seizures or things to do with Epilepsy, but when it came to getting sober forget about it! I wanted nothing to do with you, your family, your friends , no one!! I cared about nothing but drinking this is how the alcholics mind works. I am not saying your friend is a addict or an a Alcholic, but something that I'm reading just doesn't make sense to me? Please forgive me if I am totally off base here or you are offended I did not reply for you to take it that way! Could be the poor thing is just scared to death! I can relate to that! When she went to the Er did they check her dilantin level? All in all, I believe her Neuroglist should be contacted! try to explain to her that going to the hospital is the best thing for her! My Epilepsy is uncrotelled by my meds I'm on 3000mg Keppra, 460mg Dilantin, 400mg Topamax, 1 mg Klonapin, 40mg celaxa, and a steriod for my recent pneomthorax! I am having Epilepsy surgery on Jan25th at the Cleveland Clinic! I will pray for you and her! God Bless! Jeff:angel:

[howdydave]

Finding the medication(s) that work for your friend is a matter of trial and error.

Sometimes they get lucky and find a medication or combination of medications that work on the first try.
Often they do not.

Some of us (myself included) went for decades without hitting upon a successful drug therapy --
especially when dealing with multiple types of seizures..
It is not the doctor's fault, it is not your friend's fault.

In my case, nothing worked and, since I had the right type of seizures, an implant device was used which has been quite successful.

I am not yet, and probably will never be seizure free.
But I am a lot better off than I was before and I have hardly any seizures (that I am aware of anyway.)

Good friends are very hard to find when your epilepsy is so "up front."
(I had tonic clonic seizures all the way through high school and a good part of the time when I was in college.)

She has a long row to hoe when it comes to fully accepting her epilepsy (it took me about 35 years.)
A good friend is about the best thing that one can have in these difficult times.

[britsbff]

Thank you all so much! I just want to make this all go away for her even though I know that is pretty much impossible. I made her a promise though. I will help her to my best ability get all the help she needs. She lives with me so I am there for most of her seizures. We actually met because she is dating my one roommate. Our age difference is so funny. She is 20... I am 38... I know age doesn't matter when you love someone but it is kind of funny when we go out and people ask if I am her mom. I get that alot with my husband too.. He is 34 and looks like he is in his 20s. We just bought a house since my first post and luckily there is a downstairs bedroom and bath so she doesn't have to go upstairs often and possibly have a seizure on the steps.

I took her to her neuro yesterday and he seems to finally be listening to her. He upped the doses of her meds and added the liquid drops of Ativan. If there is no response by her next appt in one month they are going to explore surgery or VNS.

All I know is I will give all I have to keep her safe and healthy.

Thanks again!

Oh, and Jeff... you are fine. Everyone has a right to talk and you seem like you are getting your life together so be proud.

[howdydave]

The best that you could probably do for her at this time is to report to her doctor exactly what happens when she has a seizure. Eyewitness reports are extremely helpful when diagnosing.

If she is beyond the diagnostic stage, then reporting on any changes in seizure types, length of seizures, side effects or any other noticable changes is extremely helpful.

The VNS is for complex partial seizures with a focal point in the temporal lobe.

How many different medications have been tried to date?
When we talked about surgery as a possibility for me, pretty much every alternative of drug therapy had been explored without success.

[britsbff]

Update:

She saw her Neurologist. He took her off of the Dilantin and raised the doses of the Lamictal and Vimpat. If after one month nothing has changed, they are scheduling the VNS surgery. She has pretty much seized everyday since I posted the first part of this thread and I am starting to link it to possibly be triggered by chocolate which may be totally out there but at least the doctor is listening to her now. I took her and I think he got the picture that I wasn't going to watch her go through this everyday without a fight. I know now that we may never get these under control but at least we can try. Thank you all so much! I am glad there are so many options out there.

[Tattoo2]

WAIT! Hold the phone! If I am not mistaken, she has not had a VEEG to even determine the exact cause which the doc cannot at all say the VNS is the best plan for her. Why has she not made an appt with an Epileptologist at a Comprehensive Center yet? Did she not find out about the details involved? Has she not come here herself yet? She needs to be here asking the questions and learning all she can so she can have a say. Too many of us have been in the place she is now with the wrong doc doing to our bodies things that cannot be undone and that will not help as another plan might. She needs to be here and under the care of an Epileptologist! Not this neuro! I have a neuro just like that. She did not to the needed fellowship but treats only epilepsy patients. She does not refer to the Comprehensive Centers and only does the VNS which is done by a general neurosurgeon, not one with training in epilepsy. Only reason I have her is because I have had the surgery already and do not need the level of care now that your friend does. If she had a heart condition and needed a procedure, she and you would make sure she went to the surgeon who knows her condition inside and out, knows what treatment plan is best in that case, and has done the specific procedure this patient needs many times. This deserves the same respect and requires it for the best quality of life to be gained. It is great to have a friend who cares as you seem to but not if it prevents her from taking the control over the situation. That means getting to the right doc. This is no at all time for play and frivolously putting in a VNS without doing the testing first! There are neuros (NOT Epis) who will do just that as you are seeing. That does not make it a good thingl This is too important to not take the right best path for the best care! Please ask her to come here! Tattoo

[tigerchef1969]

I agree with Tatoo 120%

[howdydave]

Has she see my site about the VNS yet?

The VNS From A Patient's Point Of View
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The VNS is not a cure all and it was only designed to be used as therapy for complex partial seizures.

Your friend has multiple seizure types.

Before your friend does anything, she definately needs to consult a second doctor who specializes in epilepsy.

In the words of Cyberonics (the device manufacturer):

• The NCP System is indicated for use as an adjunctive therapy in reducing the frequency of seizures in adults and adolescents over 12 years of age with partial onset seizures, which are refractory to antiepileptic medications.

In other words:

• Adjunctive therapy: the device is designed to be used along with medications, not in place of them
• Reducing the frequency of seizures: Nobody should expect the device to totally eleminate their seizures

In my words (from my site):

THE VAGUS NERVE STIMULATOR DOES NOT STOP SEIZURES!

• The VNS may reduce seizures although there is a fairly hefty percentage of people who experience no reduction in the number of seizures that they have after the device has been implanted. (As a matter of fact, the number of seizures has actually increased in a few cases!)
• The way I'm looking at this is: "Gee, it would be nice if the number of seizures could be reduced, I'd even be satisfied if the only thing the VNS did for me was to give me an aura before every seizure."
• The VNS is not a miracle machine, so I will not be absolutely crestfallen if I don't show any improvement after the implant.
• I believe that this is the only psychologically sound outlook that a prospective patient can adopt for him/herself.