"Mimicking" Temporal Lobe Epilepsy???

Rev-Rog

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I've 'Googled' the above question, and it came up blank - SO - please help me :0)

Yes, I am probably in denial, and I mean absolutely no offence or disrespect to the wonderful people who have moved from denial into acceptance - but I am not there yet, and are looking for all and every explanation for the 50+ Temporal Lobe Seizures I have in a 3 hour period - mainly because I do not want the restrictions placed upon Epilepsy in NZ - i.e. not allowed to drive for a year after last seizure.

So my question is " Are there any other 'illnesses' or 'conditions' that can mimic Temporal Lobe Epilepsy - for me in my Olfactory/Nose/Smell.

Please be gentle on me, as I'm feeling a bit fragile, as at the same time as these seizures, I am just starting into a 2 year program of diagnosis and treatment of IBD (thank you to the people who have encourage me already, and hopefully some day soon I can repay the encouragement or 'pay it forward' as you have to me :0)

I am on a decreasing dose of Prednisone, as well as Quetipine, Amytript, Buscopan, Loperamide and Losec, as well as Sodium Valproate 1000mg.

Thank you in advance, and I really need your input and thoughts.
 
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Fedup

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Rev-Rog

We were all or still are in some way in denial about epilepsy, do not beat yourself up to much its not easy to accept E it is more a gradual process it does not happen over night. Are there other illnesses with similar symptoms, yes there is a few and it can be easy to mistake them.

The restriction of no driving apply's in every country and I personally think it is a good rule, think of how you would feel if you hurt or God forbid killed someone. Not a nice thought.

All of this is a lot to have thrown at you and you cannot be expected to turn around and say "ok I have E" it take time and adjustment on our part which is normal and it is normal to feel fragile there would be something wrong if you had no feelings.

You will get there just give yourself time.
 

Nakamova

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Are there any other 'illnesses' or 'conditions' that can mimic Temporal Lobe Epilepsy - for me in my Olfactory/Nose/Smell.
Migraines can have similar symptoms, including phantom smells. But the 50+ seizures in a 3-hour period that you mention is much more likely to be epilepsy-related. And the IBD diagnosis may also point to epilepsy -- the disorders often co-occur, with absorption issues and nutrient imbalance being a possible secondary seizure trigger. If you experience impaired consciousness during your symptoms, then the driving restriction is best for the safety of everyone concerned (even if it is a hugely frustrating nuisance).

I hope you can get your gut back in healthy working order -- that should help your brain be happier too.
 

Rev-Rog

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Thank you, Nakamova - for your reply and encouragement. I can't deny the TLS's that I had, with my wife and doctor both seeing them as well. I am not sure if these seizures would cause me to have an accident if I were driving and had them, but I guess that the risk is that because they are seizures, that a larger or more dangerous one could occur?

It's hard because I am making so much effort for the specialists to take my IBD seriously after 20 years of it being chronic, and when it comes to the Epelispy I am wanting them to 'down-play' it and treat it lightly.

At the moment I have a Pill Cam stuck somewhere inside me, after it didn't move when swallowed around 10 days ago. On top of this, I am coming down from my Prednisone.

I also have some mental health issues, BPD and OCPD.

Makes it look like I am quite a sick person, but I stil manage to be a full-time pastor, as well as a home industry as an engineer, as well as that - my wife and I do emergency placement/transition for babies who have been taken away from their dysfunctional family by the police or our social services here in NZ.

My lovely wife of 30 years will also have brain surgery in the next couple of months.

Thank you for letting me 'vent' and your kind responses.

There are not many people that I know who have any of the health issues that I have, and I am appreciating the contact and potential friends from this site :0)
 

Nakamova

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I guess that the risk is that because they are seizures, that a larger or more dangerous one could occur?
Unfortunately, that is one possibility. It's also possible that the TL seizures you are having won't escalate to the point that you lose consciousness. One of the more frustrating things about epilepsy is that it's very difficult to predict what path the disorder will take in any given individual. For that reason we often have to make decisions based on a worst-case scenario.

It sounds like you and your wife have a lot on your collective plates. Best wishes to you both.
 

Rev-Rog

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Unfortunately, that is one possibility. It's also possible that the TL seizures you are having won't escalate to the point that you lose consciousness. One of the more frustrating things about epilepsy is that it's very difficult to predict what path the disorder will take in any given individual. For that reason we often have to make decisions based on a worst-case scenario.

It sounds like you and your wife have a lot on your collective plates. Best wishes to you both.
Thank you for your encouragement. Isn't it wonderful how this can be given and received immediately from all corners of the globe :0)

I had a bit of a 'spell' when buying my lunch today. I knew it was coming, so was able to brace myself on the cafe' table, and fortunately didn't collapse.

However, it has really rocked my confidence. I wouldn't want to put myself - and more importantly - anyone else in danger should I fall or loose consciousness.

I am coming to realise that regardless of the cause of the seizures, they are what they are - seizures - and must be treated as such. By this I mean that I can't 'brush them aside' and blame my other medications or steroids.

It's a big learning curve for me, and are thankful for this forum and wonderful people like yourself who take the time to care and support others who have just begun the journey you have long traveled :0)
 

Nakamova

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Do you keep track of your seizures/symptoms in a journal? That can be really helpful -- it can give you a sense if they are changing in any way (frequency, duration, kind), as well as provide useful information for your doctor. It can also help you look for patterns or secondary triggers. Triggers can be things like fatigue, food sensitivities, nutritional imbalances, illness or infection, flashing/fluorescent lights -- things that can act as physical, physiological, emotional or environmental stressors. Not everyone can identify particular triggers (and they can change over time), so don't worry if nothing obvious shows up.

I am coming to realise that regardless of the cause of the seizures, they are what they are - seizures - and must be treated as such. By this I mean that I can't 'brush them aside' and blame my other medications or steroids.
The medications may be playing some role, but if they are, it's likely to be a secondary one. In other words, if you already had a predisposition or vulnerability to seizures, the medications or withdrawal from them might make them worse. Having a journal to record symptoms would make this kind of connection clearer. It also wouldn't hurt to have your doctors test the blood serum levels of the medications you are on, since some of them can interact -- for instance, valproate can cause amitriptyline levels to rise significantly.
 

Fedup

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Rev-Rog

Do not forget you give encouragement as well, even though you may not see it yet but you do. Sorry you had a bad time at lunch today but do not let it rock your confidence you are better than that. You would not put anybody in danger of that I am sure, this is most definitely a steep learning curve but you will get there in time. Nakamova has good words of advice for you, we all had and still are learning so you are not on your own.
 

Rev-Rog

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Thanks, team.

Appreciate your support and advice :0)

Saw my GP (local doctor) a couple of days ago, and he has suggested I increase my Sodium Valproate to 1500mg per day. Haven't had any TLS since Sunday, and don't appear to be too light headed with the increased dose.

So crazy when I take my tabs at night, usually around 6 different meds, and then the P in the morning. Seems to work though. The ones at night times make me sleep, and ones in the morning keep me awake :0)

At the moment my wife and I are having to say good-bye to our baby of 7 months as she transitions into her new family. I am not sure what it is in your country, but in NZ we have CYFS which is a state facility for at risk babies and children up to the age of 16. Debbie and I take babies into our home and hearts, and intentionally bond with them so that they can then 'bond again' with their new family. We have had Valintina since birth, and I love her so much. The thought of loosing her makes me cry :0(

However, over the last week we have had her 'new mum to-be' come and live with us so that Valintina can get to know here before she leaves us next Monday.
 
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Rev-Rog

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Prednisone and anti-epileptic medications do not mix well - be very careful
Yeah, kinda finding that to be true :0)

Mixing all these meds can produce quite a cocktail of symptoms and side-effects :0(

Down to 15mg Pred per day, will take another 4 months, as I started on 65mg for around 2 months before tapering off.
 
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holy moly!!

I work as a writer for a company that sells medical products - I actually have had pages on prednisone/cortisone/methylprednisolone open for the majority of the day, so it was interesting to stumble across this post. I don't know what most of the other pills are - but a lot of the website I'm reading about say to consult your doctor before taking an anti-epileptic medication with a steroid - as steroids compromise the immune system, weakening the body. Its scary stuff!!

I wish you the best with your FLS - and welcome here! :)
 
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and - I've also done some research that some aed's work dually as a pain reliever, by numbing the nerves - Gabapentin and pregabalin have both been proven to reduce neuropathic pain :)

I like multi-purpose!!
 

Rev-Rog

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Yeah, it can be quite tricky. I need the Pred, otherwise I quickly relapse into a full flare and with IBD that is not a nice place to be. Part of the investigation with my Gastro team is to find a less harmful medication than Pred. I've been taking Pred for around 9 moths now, and although it put me into remission in 3 days (been in a horrific flare for 20 years) I don't know if I would take it again (there is a 'pulse' option with Pred, 3 months on, 3 months off) :0)
 

MMRocks

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Rev-Rog I have been researching for a long time and other factors that may be in consideration:

1. Toxic exposure of some type. A broken thermometer, a crop dusting plane, a neighbor's weed killer, a busted can of bug spray in the back of the utility closet, mold behind (or in) the hot water heater. Has there been a toxic exposure in your home or place of work in the past year?

2. Severely depleted vitamins/minerals. Easy to check with blood test. If this is the case, I highly recommend a support forum just for that (for example, I belong to Magnesium Advocacy Group and All Things D, both on facebook) because there is so much more to healing these deficiencies besides just popping a vitamin.

3. Damaged gut, "leaky gut syndrome", which is a serious problem for two reasons. One: your gut distributes And manufactures vitamins to the entire body, but also gives the brain specificially everything it needs to function. So bad gut function means bad brain function. Two: there are brain cells in your gut, a second brain aka gut brain, this system is called the Enteric Nervous System, we learn more about it every day. If your gut is damaged then it must be repaired ASAP (probiotics and bone broth).


Feel better~MMR
 
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