Hi,

I am being told different things by different doctors regarding seizures. I have been having this thing where I smell cigarette smoke that isn't there. I had it often before I had brain surgery 6 yrs ago, then it went away for a couple years and now it's been back. I recently had what they thought was a TIA and then 2 more episodes at the hospital. About a week later I had the same episode happen. After CT's and MRI's they said it was not a stroke or TIA because there was nothing permanent on the scans. When I looked some things up it really sounded more like simple partial seizures.

My neurosurgeon is sure they are temporal lobe seizures while the neurologist says the 2 EEG's were clean. Grrrrrrr. I am at a loss. I am being scheduled for a different EEG with a nasal something-or-other soon.

Anyone else have these strange smells that aren't there? There is much more detail to all this but I didn't want to make you all fall asleep !

Warm Regards~

Hi countrymom,

Welcome to the forum! What you are describing is a simple partial seizure also known as an aura seizure. You will smell odd odors that aren't even around you and sometimes I get a nervous feeling in my stomach but after a few seconds everything is fine.

I've had right temporal lobe epilepsy for 39 yrs. and I had 2 brain surgeries to help reduce my seizures. Just like you the neurosurgeon found scar tissue on my right temporal lobe but when they did surgery they found damage on my left temporal lobe also that not a single test picked up and that's because the damage was to deep in my brain.

My neuro I had yrs. ago told me that the moment I started to go into a simple partial (aura) seizure to tighten up all the muscles in my body and make my hands into tight fists and this would stop the seizure from going into a absence (petit mal) seizure or a complex partial seizure that I often have. I've tried his idea and take my word it has stopped many seizures. Here's wishing you the best of luck and May God Bless You!

Sue

Thanks Sue. I am new to this and don't understand what is what as it seems too minor to be anything. I have also had several times where I am missing time. I've had three different sorts of experiences so I feel doubtful that they are seizures.....but I would LIKE to be doubtful at this point !

The brain surgery was for something totally unrelated and it was so strange that after it, the smells stopped for such a long time. Anytime scans (MRI and CT) have been done especially after this so-called TIA, they said they were clean.

Why would nothing show on EEG? I had one just 24 hours after 2 of the strangest episodes. This is awfully frustrating. We have many diseases at our house and I like the ones that are cut and dry with predictable symptoms and outcome. I have a daughter that has seizures also.

Thanks~

Hi Countrymom,

I hope I have been of some help to you. The reason why an e.e.g. will not show any problems is because brain damage can be to deep in the brain and when the e.e.g. is being done it can't pick it up or show anything. Also there have been times when I've had to have special e.e.g's done one time I had to stay away for at least 24 hrs. which is called a sleep deprived e.e.g.
Another time my neuro ordered that different color strobe lights be flashed one at a time this can sometimes trigger seizures for a person if they are photosensitive which means certain colors can trigger seizures. I've also had a video e.e.g done (veeg.) and that's when I had to be admitted into the hospital and my neurosurgeon put 7 depth electrodes on my brain and then I was on camera 24 hrs. a day unless I was using the restroom. The Dr. gave me foods that would trigger seizures for me like potato chips and diet soda. Often people go into seizures from using nutra sweet or any other type of artifical sugar because it causes more electrical activity in the brain and it can trigger seizures.
There are many things that can cause epilepsy like the following:
genetics, MS, autism, tramatic brain injury, lack of oxygen, a bad blow to the head, trauma, difficulty at birth, drug and alcohol abuse, and even a bad scare sometimes a person with diabetes can also have epileptic seizures also.
You mentioned where there have been times where you have been missing time. This is what an absence (petit mal) seizure is like. I will start to stare like someone daydreaming and then I blank out not realizing what's going on around me but I will continue to talk to others, and if I'm cooking or doing some type of work I will continue doing it I just don't remember. It's like having amnesia or a better discription is someone who had a few to many drinks and they don't remember driving home or what happened the next day. This type of seizure will last for about 30-45 seconds and then you will probably feel tired and may have a headache. If you notice any of these signs my best advice to you is to have your family Dr. refer you to see an
Epileptologist (Dr. specializing in Epilepsy) and be sure you go to an Epilepsy Center which are usually at University or Big Hospitals. You will get the help you need seeing a Epileptologist because they are better educated in epilepsy and in detailed neurology.
From this point on keep track of your seizures get a calendar and write down any time you might have had a seizure along with a discription of the seizure. Also be sure to write down when you start and stop your monthly cycle because hormones changing each month can trigger seizures also.
I'm sorry to hear that your daughter has seizures. I have cousins with seizures also. I found taking vitamin B12 1000 mcg. once a day a great way to help reduce seizure along with the ketogenic diet. Have your daughter cut back on the carbs. and starch foods and start eating foods high in fat. This will build keytones in her system and the keytones will reduce or stop her seizures. You can give it a try also if you want to. You will have to see a dietician and you can buy the book titled: The Epilepsy Diet Treatment by Dr. John Freeman who works at Hopkins University.
I'm sorry to carry on so much. I wish you and your family only the best of luck and May God Bless All of You!

Sue

Thank you so much. Little by little I'm learning. I guess I just don't quite believe I'm having them. I see my neurosurgeon soon and he is very direct and great about things so I'm looking forward to what he has to say. Just hearing me describe them he says that's what they are for sure. Can they be diagnosed like that, just clinically with no "proof" on testing?

Hi countrymom,

Everyone that I have spoken to that has epilepsy has had testing done to find out if they are having seizures. Sometimes none of the tests will show any problems and that's when the Drs. go into a detailed study on the person. My case was a wierd one I had to many cells on the right temporal lobe that didn't dissolve as I grew older and this in turn caused migraine headaches which lead to seizures for me when I was a kid. My Epileptologist who has been in the medical field since the 1960s' told me he had only seen 2other cases like mine.

If I may ask have you been having migraine headaches at all because often they will lead into seizures. Here's wishing you well and May God Bless You!

Sue

Yes, I have Migraines. Have had them for years. Hmmmmm.

Hi countrymom,

The next time you see your neurosurgeon or neurologist be sure to tell them that you have been having migraine headaches. When I was a kid 10 yrs. old I started having migraine headaches and then the seizures began. I'm not sure how but there's a connection between migraines and epilepsy.
You can also get info. from the Epilepsy Foundation of America if you live in the U.S. just call the following phone number 1-800-332-1000 they will send you info. in the mail for free and answer any questions you have. They may be able to tell you if you have a local Epilepsy Foundation or support group in your area also. Here's wishing you well and May God Bless You!

Sue

countrymom,

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 number and caring fellow members here, welcome to a supportive and relaxing place. Our shoulders are here for support in many ways. Looks as though Sue has been here to help you out. If I were you avoid bright lights flashing at you the tend to start a seizure. Also keep a notebook with you at all times righting down when you have one and your feeling after.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thanks so much Darlene. I am learning...... Ahhhhhh!