1. < Epilepsy & Seizures
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Wondering if anyone has had the vagus nerve stimulation?

Posted by acpsulli @acpsulli, Sep 11, 2024

My son started having tonic-clonic seizures in Aptil. He is 15 and also has high functioning autism. So far we've only tried Keppra and he is at 1500mg BID. He continues to have breakthrough seizures and right now they are averaging every 6-7 days and he has had two seizure clusters in the last month. We had an extended EEG study done a few weeks ago and should get the results back this week. We don't like the side effects of the Keppra and obviously it's not working, but we really don't like the potential side effects of any other AED we've read about. Everyone says you have to have tried at least two AED's without success before qualifying for the VNS device. My question is, is anyone using the VNS device to control their seizures? If so, any feedback on it would be great. Second question, did anyone have luck getting approved for it before going through several medications first.

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joseph1963 | @joseph1963 | Aug 23 2:54pm

I had the VNS surgery in November 2000. It was performed in Johnstown, Pa. The procedure went perfect. 2 weeks later they turned it on. It was adjusted numerous times before I could tolerate the stimulation. It helped to some degree. My wife could swipe the magnet, and it would stop the seizure. The battery went dead in June 2007. The device was replaced in November 2007. The new one had the same results. Around 2010, I had them shut it off. I was clearing my throat a lot. The VNS was starting effect my vocal cords. Today, I continually need to clear my throat. Every 30 -45 seconds.
Presently on Lamictal 200mg. 1 morning, 1 evening. 2mg. Clonazepam, nightly, main benefit is to help me sleep. I took Keppra 750mg. 2 times a day for over 15 years. Recently was changed to Briviact. 75 mg. 2 times daily. I wanted off the Keppra when I finally realized that I was having anxiety attacks and that is one of the side effects of Keppra.
The Briviact has the same side effects as the Keppra. After finding this out, I quit taking it.
My seizure control hasn't changed any since I quit using it. Presently taking supplements which have helped a lot.
I now believe that I'm having more anxiety attacks than seizures all these years. Many symptoms of Anxiety attacks and seizures overlap each other.
If you have the opportunity to see an Epilogists, someone who specializes in epilepsy, take advantage of it.
With any drug, pay attention to detail symptom's and issues that your child is experience. I suggest that you get on the internet and find articles regarding Keppra and read them. Most of the information is overlapping, but you may find something that pertains to your child. It will empower you with knowledge which is helpful at Dr.'s appointments.

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jamessr | @jamessr | Sep 13 12:51pm

Sharon
Sorry to hear the journey your son has started. My son has been having seizures for over 27 years and we've tried about every combination of AE drug out there with little success. To be honest all of them have serious side effects. And over a long period of time there are accumulative side effects are effect your behavior, and cognitive thinking. My son has a VNS about 2 years ago and we're really no better off than before. About the the only positive thing i can say we've experienced is that when you activate the VNS with your magnet it does shorten and generally prevents him from going into multi-clusters. Which are very BAD. But epilepsy is different for everyone, so don't accept or reject every option that is shared with you. Do your own research get every question answered, and THEN go with your gut feeling. Next moth my son is having a DBS implant at Mayo where the rod tips are graphed with stem cells. This is a new twist on the DBS surgery only the second one done by the Mayo group. One thing i would suggest is get your son genetically test. You don't know , what you don't know.
Good luck and God Bless
james

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sb7 | @sb7 | Sep 13 3:25pm
In reply to @jamessr "Sharon Sorry to hear the journey your son has started. My son has been having seizures..." + (show)
Profile picture for jamessr @jamessr

Sharon
Sorry to hear the journey your son has started. My son has been having seizures for over 27 years and we've tried about every combination of AE drug out there with little success. To be honest all of them have serious side effects. And over a long period of time there are accumulative side effects are effect your behavior, and cognitive thinking. My son has a VNS about 2 years ago and we're really no better off than before. About the the only positive thing i can say we've experienced is that when you activate the VNS with your magnet it does shorten and generally prevents him from going into multi-clusters. Which are very BAD. But epilepsy is different for everyone, so don't accept or reject every option that is shared with you. Do your own research get every question answered, and THEN go with your gut feeling. Next moth my son is having a DBS implant at Mayo where the rod tips are graphed with stem cells. This is a new twist on the DBS surgery only the second one done by the Mayo group. One thing i would suggest is get your son genetically test. You don't know , what you don't know.
Good luck and God Bless
james

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Thank you James. I am so sorry for your struggles. I know them all to well. Our current neurologist keeps pushing vns but my husband and I are not convinced this is right for our son. He is also autistic. We have a consult with a epileptologist at Duke University next month and are praying he has much more to offer us.
Thank you and God Bless you too.
Sharon Boothroyd

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mssandra7 | @mssandra7 | Sep 17 9:56am
In reply to @sb7 "Hello all, I am new here to this website but in need of some help. My..." + (show)
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Hello all,
I am new here to this website but in need of some help. My son is 32 years old, autistic and has had seizures since he was 19. We went through much trial and error before his neurologist was able to get him on a trio of meds, zonisimide, gabapentin and lamotrigine er, that has helped tremendously with him having a breakthrough gran mal about every 2 years but he has alot of focal seizures lasting less then a minute total. He doesn't loose consciousness with these but we had an ambulatory eeg done that showed he has almost constant seizure activity in his brain. He has only had 1 other ambulatory eeg done before and that was 12 or 13 years ago when his seizures first started. He has been having the small focal seizures for a long time. Neurologist told me these were breakthrough seizures and is really pushing vagus nerve stimulator therapy. His dad and I have been doing alotvof research and dont think this is best for him. The possible side effects are very scary and due to Eli having autism he has a very limited understanding of things. He never knows when he is going to have a seizure so him havingva magnet to scan the vagus nerve implant isnt going to be helpful. He would still need to be on meds and there are no guarantees this will even help him. As his mother i suffer from a damaged vagus nerve that occurred during surgery and I have chronic gastroparesis. We are afraid of the vns. I got a little upset with his neurologist because they ask me how did I plan to control his seizure activity if we don't do the vns. I told her, as his doctor I thought they were supposed to come up with another plan, not us. I am so frustrated and worried for him. Any comments or help is greatly appreciated.
Worried mom here!
Sharon

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Sharon,
I would be interested to learning more about your Vegas nerve damage. What were your symptoms? Diagnosis?
Hugs,
Sandra

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