Hello we are happy to help you out. As Candi pointed out what tests have you had done? Of course the most common is the EEG, but that can miss seizure activity since we really do not know when our seizures are going to occur.
Doctors never could find anything wrong with my brain, no problems during my birth, no head injuries, no allergies so the neurologist were pretty perplexed, but not as much as I was.
An MRI and other scans later in my life found very small amounts of scar tissue on the brain so the doctors came to that conclusion that was the problem, but they were not completely sure.
As Candi commented find another specialist. If you have not seen an Epileptologist please do to get more opinions to compare. Please do not give up because we can still have a life to live even if you are having seizures and the more perserverence you have the more you will learn.
Amy, I agree 100% with Candi and Angie. Your husband's mother is a threat to your husband, you and herself. Mother in law need psychological help now!
The authorities need to be notified to get your husband out of the captivity he is now in. This can be be a health threat to everyone. Get a restraining order because you are his wife and you need to be together.
As Candi said get your name as an emergency contact and take his mother off. Please contact his neurological doctor to make sure you are the primary contact not his mother.
My prayers are with you and please keep fighting for his freedom that is why we live in America!
Twilight, we want you to know that with your medication experiences with other medical issues you need to be patient with side effects and exactly how long it takes to get the medications through your system before you may start seeing results.
I would recommend that you take your prescription list to a pharmacist and have a one on one counsel session with him or her to find out the effects of all of the medications you are taking for spinal stenosis and fibromyalgia and your anti seizure medications especially when they all have been prescribed at the same time.
It can take time for medications to be adjusted and of course you are aware of this due to the other medications you are on.
If you are still have problems with both consider other options. I know friends who have fibromyalgia and have tried alternate methods such as acupuncture, water therapy and other natural choices.
The consulting with a pharmacist will help you understand the possible side effects of all your medications and the what can counter-interact with your medications as you are being adjusted.
I am a friend of Angie's who had the same type of surgery done, that is how we met.
Amy, A happy late congratulations to you. After what you wrote I have come to the same conclusion that Angie had for you.
Also the average man does not always want to discuss activities the same way women do. Your husband is now in a new life and if you can watch closely to exactly what happens during the seizure and document it.
Keep the journal and hopefully sooner or later your husband will relax and will be able to discuss stuff like this openly and with less denial.
I had the same question three years ago due to the pressure and sensitive area on the temporal lobe. It was 8 years since the surgery and I asked the doctor if this was common.
It has been over 11 years since my right temporal lobectomy and I still have a sensitive bruise type feeling on that side. The doctor said that this can happen because where the brain and skull healed back this may have affected some of the nerves in that area.
I also found out that I have a mild allergies and when the barametric pressure changes I get alot of pressue on both sides of the sinus areas.
If it becomes too uncomfortable discuss this with your doctor to find out what your options will be.View Thread
Nancy, the responders to your email are not panicking, we are simply trying to give you information to pass on to your doctor for your quality care and service.
Having to wait in this situation is not good patient care. What if your doctor became very ill or had an emergency who would cover for them?
This can be a very good learning experience for your doctor because what if your doctor had a patient with the VNS who had a life threatning experience with the VNS similar to Dennis from the previous VNS discussion?
This could help you to help other future patients so they did not have to wait to get their VNS adjusted. what we are trying to share with you is that your doctor need back up coverage.
This is not downgrading, just simple facts that should be looked at by doctors to help their patients.View Thread
Nancy, no one is panicking here, we are simply giving you some advice to share with your doctors. It is not fair that you have to wait so long as a patient, that is not good patient customer service at all.
What if this was a another patient with a VNS and it was truly an emergency similar to the man Dennis from the other discussion?
I think you should discuss this with your doctor, who would cover for him or her if they were ill and not able to work?
I hope you understand where we are coming from? No one is panicking we are just offering good advice to share with you and your doctor.
Your learning experiencing will benefit each other and other patients for the future.View Thread
Nancy, I agree with Candi's response. There must be a back up physician or another neurologist on one of the Islands who should cover your main neurologist's patients while on leave. especially when it deals with the medical device.View Thread