Two Topics: Anyone out there with TN and E? Anyone smell bad smells during night seiz

[Patricia]

Please be patient with me while I learn to navigate the site. I have so many questions rattling around my head.

Firstly, does anyone else have Trigeminal Neuralgia and E? I never had any E symptoms prior to my neuro-surgery. I had 'episodes' where I would feel frozen though I could hear people and respond. Kind of staring into space. The past few months I have had other types of 'episodes' including one where I wet the bed and felt absolutely wiped out for several days after. So dizzy and headachey.

Last night I woke up several times because I smelled something bad or rotten in the room. My husband slept soundly beside me and wasn't aware of the smells. I would awake and smell the bad smell, feel a bit concerned and then fall asleep again. In the morning I felt like I had been hit with a truck which made me begin some research about seizure and bad smells.

Would you please tell me if you have experienced this? This ride is getting bumpier all the time.

 

[acshuman]

The Road To Finding thr Correct Treatment May Seem To Never End

Patricia,
I have to say to you what I have said to many others who have recently been diagnosed with E. There are two things that will be your best friends if you need to find a treatment that is going to work for you: 'TIME' AND 'PATIENCE'. It may take longer to find the necessary treatment so you have to be willing to accept the time it may take. To be able to accept what may seem to be forever to you you will need to have patience! You can't expect anything to be done too quickly!
I can speak from experience that it may seem that a person who is undergoing the process of finding a successful treatment is taking forever. They may also feel like a 'lab rat' because of the many different medications that may need to be tested by the individual actually using them to see if they work in their case. This is very necessary in many cases if the person w/E wants their doctor to find a treatment that can be successful.
You already know about the tests that you have taken and there are many more that could be determined to be necessary. This is what a person w/E has to learn to live with.
Their life may seem to totally destroyed by these things, but that person just needs to look at some of the people who aren't able to do anything for themselves because of their condition. You have to keep an open mind because there are always things that could be happening to you that could be much worse than having to live your life w/E! :twocents:

acshuman

 

[Porkette]

Hi Patricia,

Many times I've smelled odd odors like natural gas, deviled eggs, or a burnt odor this is called a aura seizure also known as a simple partial seizure.
AC gave you some good advice when I was younger I didn't understand anything about my epilepsy but yrs. of meds and Drs. have taught me a lot not to mention all the help here on the forum from others.
If you have had a hard time sleeping you may want to ask your neuro to do a sleep study on you, I had one done and they found I was having seizures in my sleep. If you do decide to have a sleep study done make sure the Dr. does an e.e.g. and e.k.g. at the same time you have the sleep study done. Wishing you only the best and May God Bless You!

Sue

 

[Nakamova]

As Porkette notes, phantom smells can be a form of simple partial seizures. (SPs can take a wide variety of forms including all sorts of sensory distortions). If you don't already, you might want to keep a journal of any unusual episodes or symptoms. You might be able to identify a pattern or particular stressors associated with your symptoms, as well as track the frequency and duration.

Below are links to some CWE threads about phantom smells:
http://www.coping-with-epilepsy.com/forums/f23/scents-smells-24605/
http://www.coping-with-epilepsy.com/forums/f23/aura-smells-15176/
http://www.coping-with-epilepsy.com...ng-do-your-bad-smells-last-per-episode-11943/
http://www.coping-with-epilepsy.com/forums/f23/partial-seizures-phantom-odors-24188/
http://www.coping-with-epilepsy.com/forums/f20/olfactory-hallucinations-eeg-question-25135/

 

[Nakamova]

Here are a few CWE threads that mention trigeminal nerve issues, hope they help:

http://www.coping-with-epilepsy.com/forums/f23/here-we-go-again-10807/
http://www.coping-with-epilepsy.com/forums/f23/dental-work-6432/

and a pubmed articles about the connection between TN stuff and E:
https://www.ncbi.nlm.nih.gov/pubmed/6747698

 

[seagull]

I either get terror deja vu or smell not nice smell.I don't know anyone who gets nice smell channel 5 be nice but never happens.
What you getting seems most unfair I make great fuss with nuro