I'm a 17 year old female who has had it up to here with my doctors...

I have had constant headaches for the past 7 years. I only recently got an appointment with a neurologist because there is nothing left to blame the headahe on. It was blamed on a palatal expander, a cyst around a tooth, and braces. The braces came off almost 2 years ago and the headaches have only gotten worse.

I'm posting in epilepsy because my gut is telling me that it is. Along with the progressively worse headaches I had a tonic-clonic seizure a few months ago and seem to be having fairly frequent absence seizures. I will also get a headache at school and getting home would be hard to remember then the next thing I know I'm being woken up later that night with no memory of falling asleep. Even walking between classes I'll be walking down a hallway and all of the sudden I have no idea where I am.

I would have thought that a neurologist could handle this but I went to one appointment and will never return to the neurologist. He did not believe a word I said and didn't even shut the door during the appointment.

I'm just getting desperate for answers at this point and any advice would be greatly appreciated.

Hi Ghost,
It sounds like you and I have a lot in common. I started having migraine headaces yrs. ago when I was 10 yrs. old then I started having absence seizures by the age of 12 I started to have complex partial seizures also where I would walk from class to class and not remember a thing. I will soon be 47 yrs. old and I saw many neurologist. I finally did the right thing and saw an Epileptologist (Dr. specializing in epilepsy) and they did a bunch of tests on me and found that I had epilepsy. You can find these Drs. at an Epilepsy Center which are often at university hospitals.
One thing that you might want to do if you haven't started is to keep a calendar and write down what time you have any seizures along with a discription of the seizure, also be sure to write down when you start and stop your monthly period because there's a connection in many cases for women when the hormones are changing before and after our period and then again during ovulation this can trigger seizures for many women and they are known as "catemial seizures". What causes them is the estrogen level goes up causing more excitment in the nervous system while the progesterone level goes down and progesterone helps calm the nerves. One thing you might want to do is to start taking vitamin B12 once a day or B complex vitamins they will help calm the nerves down. Also stay away from anything with nutra sweet in it like diet soda it has been proven that nutra sweet will cause more electrical activity in the brain which can trigger seizures for many people. I found this out the hard way when I used to drink diet soda a lot. You might want to look into the ketogenic diet it is a great diet to help stop seizures and it works really good with younger people also.
If I may ask are you taking any meds for your seizures? I am taking mysoline, keppra, and diamox and it has been a big help to me. I wish you the best of luck and May God Bless You!

Sue

That really does sound similar...

I have not been diagnosed with anything because none of my doctors believe me. I'll have to look into a doctor that specializes in epilepsy. I am not on any medicines to help with this situation and lucky me, I am allergic to an ingredient in diet soda and in many other things that are thought to trigger seizures. Thank you so much for your help!

Hi Ghost,
I'm glad to be of any help. I remember when I was your age and going through puberty it was the hardest time for me and I had many more seizures do to hormones changing a lot. If you can get in to see a neurologist or Epileptolgist have them do an e.e.g., MRI, CT scan, and some blood tests. If you use a cell phone you might want to cut back on using it even if your texting because it has been proven that cell phones can trigger seizures for people who have a nervous disorder do to the frequency your using. It also causes short term memory loss for people. My Epileptologist and Neurosurgeon told me to stay away from cell phones a few yrs. ago. Here's wishing you well and May God Bless You!

Sue

What is probaly the most frustrating part is that I've seen a neurologist and he was, for lack of a better word, rude. He didn't listen to what my symptoms were and said that the tonic-clonic seizure wasw normal for people. I was very unhappy with the visit and have not gone back but I'll look into a new one. I have had blood tests, an EEG, and an MRI but they all came back normal. I guess it means I need to find a GOOD neurologist, but that is proving to be harder than my mom and I had thought.

Thank you so much for all of your advice, it is nice to know that I'm not crazy with all of this.

Hi Ghost,
I'm sorry you've had a hard time with the neurologist, this has happened to me also where the neurologist didn't believe me at all that's when I turned him into Medical Conduct Board and found out he wasn't the best neurologist and he got in a lot of legal trouble with other people for Malpractice.
Take my word there have been many cases where a person will have all the testing done that you mentioned and it won't show any problems and that's because the damage on the brain is in to deep for any of these tests to pick up. I had to have a video e.e.g done and they had to drill 7 holes into my head and place the electrodes on my brain in order to find some of the scar tissue but it wasn't until I had my last surgey (ultra sound) to help reduce my seizures that my neurosurgeon found even more brain damage on the left hemisphere of my brain along with the frontal lobe of my brain. The Dr. was amazed that the tests didn't show any of these problems.
I hope you are able to find a good neurologist or Epileptologist. If you want to get info. you can call the Epilepsy Foundation of America at
1-800-EFA-1000
I wish you the best of luck and May God Bless You!

Sue

Thank you so much for all of your help!

I agree with Sue, see an epileptologist. It took me six long years to be correctly diagnosed with epilepsy (they kept telling me I was diabetic and having hypoglycemic reactions). I finally had a grand mal seizure when I was six months pregnant and somebody finally figured out that I'd been having complex and simple seizure's for years. All caused by what they thought at the time was a cyst on my brain (which in fact turned out to be a tumor) that I had removed seven years ago. I still have the occasional sp but am pretty well controlled by Topamax now (after trying several other meds that never did work. Don't give up, be persistant until you get the help you need.