Help I don't know what to believe
 

I am a 56yr old female and about 6 months ago I started smelling what I thought was smoke but no one else could smell it. I thought I must be getting a sinus infection. I started getting headaches, a little dizzy & an earache within a couple weeks of this and then I was sure it must be sinus. I saw an ear nose throat doctor and had a hearing test. They checked everything out including for vertigo and it all came back normal so I was sent to a neurologist. The spell continued but didn't really get any worst. After talking to the neurologist she thought I was having simple Partial seizures, Temporal Lobe to be exact and ordered an EEG. She wanted me to start medication but I wanted to wait for the test results. The EEG came back normal but the doctor still insists that I should start this medication. I am hesitant to start a life changing medication based on what a doctor thinks without any confirmation from any kind of test. Is this a normal practice of diagnosis. Does anyone know what I might be risking by not taking the medication if by chance this doctor is correct. So many of the symptoms that confirm this type of illness can be explained in other ways. How do you know when it is a seizure or menopause, or just a headache, or stress. I have experience da ja vue and would never have thought this was a possible symptom cause everyone experiences it from time to time. Is there a way to be sure that I am suffering from this illness before taking the medication?

Hi Daue,

Welcome to the forum! I've had temporal lobe epilepsy for 43 yrs. and when you smell an odd odor that is a sign of a simple partial seizure other signs are seeing colors in your eyes and the deja vu is all part of the epilepsy.
You mentioned that you get headaches does this happen before or after you smell the odd odour? Also if you feel tired and confused after any of this happens this is what happens after a person has a seizure.
Often a e.e.g. will come back normal and that's because the brain damage or whatever the problem is that is causing the seizures is to deep in the brain for an e.e.g. to show. You need to get an MRI done along with a PET and SPECT scan these tests will show for sure what is really going on.
In regards to the medication I would give it a try and start taking it because if you don't there's the possibility that you could have a more serious type of seizure and nobody wants that to happen. My best advice to you is to have your Dr. refer you to start seeing an Epileptologist which is a Dr. that specializes in epilepsy. You can find these Drs. a university or big hospitals. Epileptologists can pinpoint what the problem is and put a person on the least amount of meds to control their seizures.
In the meantime get a calendar and write down anytime you may have a seizure along with a description of the seizure by doing this the Dr. may see a pattern in your seizures they may happen at certain times of the day/night or certain days of the month. Also if you are going through your change that can cause seizures to either increase or decrease because the hormones are changing and that's what often triggers seizures for many women.
Stress and lack of sleep are the 2 main things that can cause seizures along with NutraSweet and eating to many carbs and starch foods along with to much caffeine. You need to cut back on all of that and stay away from NutraSweet because that causes more electrical activity in the brain which trigger seizures for many people. Also take note what the weather is like sometimes a low pressure in the weather can cause seizures because the air is heavier which in turn changes the hormones triggering seizures. Here's wishing you the best of luck and May God Bless You!

Sue

Short EEGs where one doesn't sleep have less opportunity to catch something useful, but not everyone with E has something show up on EEG, so what kind did you have? Slow approach is to not take meds, track things, revisit things after you have some data. If your neuro feels strongly, perhaps the doc can explain it more or suggest a second opinion. If you have some idea of the frequency of these events, taking an AED would probably result in them stopping or occurring less often if you have epilepsy. Sure, a lot of these events can happen outside of epilepsy, but happening more would also support it being epilepsy.

Nice to meet you!!
 

:Wave-Hello: Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

One other is thing avoid very bright flashing lights as in a theater, just close your eyes and turn yours head with them.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.:smileypray:

Darlene :hug:

Thank you all for your help and kind words of support. The EEG I had was both while I was awake and The Dr hade me stay up the night before so I was sleep deprived so I think I fell asleep for a little bit of the test. The ear nose and throat doctor I saw first ordered an MRI which came back normal that is why I was sent to the Neurologist. It is just hard for me to accept that a doctor can say I have this life changing illness just by talking to me when all the medical test come back normal. Are there any other test available that might help convince me of this diagnosis. Thanks for listening. There isn't anyone I can talk to about this. My husband thinks the doctor is crazy because he doesn't see any problems with me and when I try to share this with friends they ask what my symptoms are and when I tell them I smell odors, and have dajavue they just look at me like I am making a big deal out of nothing.

Hi Daue,

You may want to get a second opinion from another neurologist or Epileptologist. If I may ask do you ever have a headache, feel tired, or confused after you have had the possible seizures? This is what happens after a person has a seizure. If you aren't having any of these symptoms then you may not be having any seizures at all it may be something else.
Here are the main things that can cause epilepsy: genetics, a bad blow to the head, a bad scare, brain damage or brain tumor, alcohol or drug abuse, or many hrs. of playing certain video games with bright flashing lights. All of these things can trigger seizures for a person. If you live in the U.S. and want to get more detail about epilepsy and finding a Dr. in your area you can call the Epilepsy Foundation of America at 1-800-332-1000 and they can help you out at no cost. Wishing you the best of luck and May God Bless You!
Sue

Sound like my symptoms - but it took almost 3 years before they told me it is seizures and i have a hard time believing the diagnosis as well. I am 55 been having dizzy spells off and on for about 3 years, Was told its allergies, its enter eye infections, its stress, its the weather. Now its seizure i dont know what to believe .I am scared to take the medication