Temporal Lobe Epilepsy at 27... possible link to other past & current conditions?

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Hi Team!
I have found your articles very helpful in exploring some issues I've been having lately. However, as you know seizures can be caused by so many factors I'm having a hard time sorting it all out. My Doctor as well has not been very helpful or seamed to want to look into things past the surface and instead just wants to prescribe me medications. I really feel like there may be a connection between the seizures I have been having per the last two months and some past condition I have had.

About my Seizures / Epilepsy:
They started ain October of 2012 out of no where and I had 1 to 2 everyday for a month before finally seeing my doctor. She suspected I was having partial seizures but didn't really do much about it other then prescribing me basically a 'placebo'. A few months later in January 2013 I had a grand-Mal seizure in the night and my boyfriend took me to the hospital which I remember nothing of. I was prescribed Dilantin which I would be on for the following month however ended up being allergic to that and was later switched to Levetiracetam (kepra).

After the hospital episode, I was ordered tests; MRI did not show anything, the EEG showed some electrical action in my temporal lobe, and thus I was diagnosed with TEMPORAL LOBE EPILEPSY. I have been on medication since the hospital and have not had a seizure since although the side effects of the medication and other issues I have have seam to become worse.

I don't know anyone in my family who has suffered from seizures ever. However, my mom and brother are both a little 'high-strung' and my brother does show some symptoms on bipolar disorder (as mentioned below)

What they seizure were like:
They usually start with me 'feeling' it coming with a warning of about 30 seconds or so where I start feeling very uneasy and nauseous and sometimes have a strange taste or smell I can't place. When they happen I become extremely hot and start sweating, I get a deja-vu feeling like a dream washes over me, however I am aware of my surroundings and do not actually see hallucinations. I get very nauseous, week and speaking feels difficult although I can talk through it. I also get an extreme feeling of feel. In all they typically last no more then a minute. I often feel better afar, however a bit clouded in my thoughts and a bit confused. I can't be certain, but I think I may also be having them at night, however I can't tell as the Deja Vu feeling is more common obviously when your in and out of dreams as you sleep.

My Tests so far:

- Blood Test: Came back with everything looking pretty okay although I way to get a copy to look further

- MRI - came back clear

- EEG - showed some activity in temporal lobe (not sure if only one side or both)

Medications I am on:
- Depo Provera - Birth control shot I have been on for 10 years

- Levetiracetam - 250mg in morning and again at night

- Cannabis / Marijuana - I know this may be debated, however this plant has helped me so much through this. Smoking was the only time I did not have seizures and it has helped extremely in calming my mood swings and with sleep. My goal is to get the CBD tincture as my main medication if possible.

About my past conditions:
- Restless Leg Syndrome for approx. 13 years (worse when I was in my teens then now, but still present)

- I always suspected perhaps I had seasonal affective disorder as I always go through cycles of ups and downs throughout the year. Typically in the fall I have lows and other times of the year highs and OCD like symptoms. Gradually I have noticed this has become worse over the last 5 or so years, and especially lately. I feel the cycles have become much more rapid and my mood changes quicker and more drastic. I have done allot of reading on this specifically and now know that Manic Depression / Bipolar symptoms/condition originate in the same area and it makes allot of sense to me this is what I am experiencing. I suspect the Kepra has added to this frustration. Daily I feel I now go through lows of anger/frustration and lack of hope, then into a mania where I need to organize things, talk quickly with many idea and also feel a bit like I'm on cocaine or something at times with a pacy heart and racing thoughts. It's really not enjoyable at all. I know I have always had these tendencies but now I feel it has just become worse and more difficult to manage daily or to be myself.

- Anxiety on and off through the years (I am generally pretty restless and can't sit still as well)

- Sleeping difficulties. I have always had issues sleeping, I am very restless and often wake many times in the night. I usually dream every night. I also get hot flashes throughout the night.

- Hit by lightning? Not sure if this is relevant but I was hit indirectly by lightning when I was 12. I was always curious if this may have anything to do with my abundance of nervous energy?

- Previous B12 Deficiency - I used to get shots for it, however currently my levels are okay

- TMJ issues - have limited jaw movement and pain over the last 4 years, again not sure if it's related

- Smoker - half a pack a day for 8 years


I have a feeling allot of these issues I have had my whole life and those that have become worse as of late, must all be connected to the activity in my temporal lobe. Through allot of forum reading I have found others with stories that seam to line up. The only exception being the fact I was hit by lighting, I can't find anyone with a similar story and still wonder if that has anything to do with anything? My biggest concern is finding a path / medication that will help with ALL issues, or at the very least not exasperate the other issues while treating the epilepsy. I do not want to be on another medication like Dilantin that made me a complete stupid-zombie that could nt think straight or function. I do really like the idea of a CBD Tincture, and wonder if anyone has experience with it or any other medication that helps with seizures and the other conditions.

I would really appreciate any help you may have in being a detective to my situation. I really do feel like many of these issues may be connected as everything I have ever had in life seams to stem from nervous system issues / brain. I am also very curious if there is any research into conditions lighting strike survivors might have had and if any of they conditions I have, mainly including the seizures and manic depressive symptoms, are an issue for anyone else in the same situation.

Thank you so much, I look forward to hearing from you all if you have any input.
 
Hi jennasaurus, welcome to CWE!

My Doctor as well has not been very helpful or seemed to want to look into things past the surface and instead just wants to prescribe me medications.
I understand your frustration with this, but in some ways, the primary cause is the least relevant aspect of epilepsy when it comes to treatment. For the majority of people with epilepsy the primary cause is unknown. Doctors are focused on treatment, and for the most part the only tools they have in their toolboxes are medications or surgery. That said, one of the toughest things about epilepsy is not knowing the "Why", and it can feel very satisfying to connect the dots back to a possible answer to that question.

In addition, it can be very helpful to identify any secondarytriggers for our seizures. These are usually stressors of one sort or another that contribute to the onset or escalation if our symptoms. Along those lines, I think it's great that you are taking a close look at aspects of your lifestyle and looking for clues that may lead to better, and perhaps non medication-based seizure control.

Depo Provera - Birth control shot I have been on for 10 years
If hormone fluctuation is one of your triggers, the depo shot can help to decrease your seizures, and doesn't interact with AEDs.

Cannabis / Marijuana - I know this may be debated, however this plant has helped me so much through this. Smoking was the only time I did not have seizures and it has helped extremely in calming my mood swings and with sleep. My goal is to get the CBD tincture as my main medication if possible.
The chemicals in marijuana mimic ones that the body produces that have a sedative effect, so it's not unusual for people to find that marijuana helps with their seizure control. But as with the official anti-seizure meds, there can be side effects, not everyone reacts the same, and people will tend to have better results with consistent usage and dosing. It would be great if the CBD tincture solves this problem, but there have been no large-scale controlled tests to answer questions about how effective it can be in the broad population of people with epilepsy. Since the U.S. doesn't tend to fund medical marijuana studies, it may be a while before such a treatment is endorsed by and available through your neurologist.

About my past conditions
Some of the things you mention (anxiety, bipolar issues) are known to co-occur with temporal lobe epilepsy. In addition, sometimes TLE is misdiagnosed as these other disorders. There can also be a vicious cycle where one or more of these disorders disrupts sleep, causing sleep deprivation which in turn can lead to more of the same.

Have you every had a sleep study done? It's possible that your sleep problems, dreams and "hot flashes" are seizure-related. Things like sleep apnea can also disrupt sleep and trigger seizures as well.

Restless Leg Syndrome: I think that like migraine, RLS is a close cousin to epilepsy and has some overlapping symptoms. It may turn out to share a common neurochemical or genetic basis in some cases. Like epilepsy, RLE is fairly common (about 10% of the population), and can be related to a wide variety of secondary triggers (like stimulant usage, vitamin deficiencies, or diabetes). And some of the same meds are prescribed for both. I've had mild (untreated) RLS in the past and very occasionally now, but not sure there's a link between it and my epilepsy.

B12 Deficiency: Preliminary research suggests that at B12 deficiency may be connected to RLS, so that may be a factor in your case. Only in very rare cases does a B12 deficiency cause seizures. However, all the B vitamins are very important for healthy brain functioning, so a deficiency might have played a secondary contributing role.

Smoking: Nicotine is a stimulant, so for some people it can be a seizure trigger. Hard to know if that's the case for you since you are a regular smoker. (If you were an occasional smoker and had seizures after each time you smoked that would make it pretty clear.)

Hit by Lightning: You say you were hit 'indirectly" so I'm not sure how extensively you were affected. Some people develop seizures as a direct and immediate result of being hit by lightning. It could also be a factor as a secondary stressor. A lightning strike can damage the nervous system, leading tho things like chronic sleep problems, or "thermostat" issues like the hot flashes you describe. Some people get chronic pain too, though it seems like your lightning strike would be too far in the past to cause your TMJ.
 
Get a sleep study done. Like you, I just won't accept this illness without a definite cause since I am idiopathic with no family history. I've read that Sleep Apnea not only aggravates epilepsy, but in some cases may be the cause. You also do not have to be obese to have it.

http://www.ncbi.nlm.nih.gov/books/NBK7419/
 
Hi Team!
I have found your articles very helpful in exploring some issues I've been having lately. However, as you know seizures can be caused by so many factors I'm having a hard time sorting it all out. My Doctor as well has not been very helpful or seamed to want to look into things past the surface and instead just wants to prescribe me medications. I really feel like there may be a connection between the seizures I have been having per the last two months and some past condition I have had.

About my Seizures / Epilepsy:
They started ain October of 2012 out of no where and I had 1 to 2 everyday for a month before finally seeing my doctor. She suspected I was having partial seizures but didn't really do much about it other then prescribing me basically a 'placebo'. A few months later in January 2013 I had a grand-Mal seizure in the night and my boyfriend took me to the hospital which I remember nothing of. I was prescribed Dilantin which I would be on for the following month however ended up being allergic to that and was later switched to Levetiracetam (kepra).

After the hospital episode, I was ordered tests; MRI did not show anything, the EEG showed some electrical action in my temporal lobe, and thus I was diagnosed with TEMPORAL LOBE EPILEPSY. I have been on medication since the hospital and have not had a seizure since although the side effects of the medication and other issues I have have seam to become worse.

I don't know anyone in my family who has suffered from seizures ever. However, my mom and brother are both a little 'high-strung' and my brother does show some symptoms on bipolar disorder (as mentioned below)

What they seizure were like:
They usually start with me 'feeling' it coming with a warning of about 30 seconds or so where I start feeling very uneasy and nauseous and sometimes have a strange taste or smell I can't place. When they happen I become extremely hot and start sweating, I get a deja-vu feeling like a dream washes over me, however I am aware of my surroundings and do not actually see hallucinations. I get very nauseous, week and speaking feels difficult although I can talk through it. I also get an extreme feeling of feel. In all they typically last no more then a minute. I often feel better afar, however a bit clouded in my thoughts and a bit confused. I can't be certain, but I think I may also be having them at night, however I can't tell as the Deja Vu feeling is more common obviously when your in and out of dreams as you sleep.

My Tests so far:

- Blood Test: Came back with everything looking pretty okay although I way to get a copy to look further

- MRI - came back clear

- EEG - showed some activity in temporal lobe (not sure if only one side or both)

Medications I am on:
- Depo Provera - Birth control shot I have been on for 10 years

- Levetiracetam - 250mg in morning and again at night

- Cannabis / Marijuana - I know this may be debated, however this plant has helped me so much through this. Smoking was the only time I did not have seizures and it has helped extremely in calming my mood swings and with sleep. My goal is to get the CBD tincture as my main medication if possible.

About my past conditions:
- Restless Leg Syndrome for approx. 13 years (worse when I was in my teens then now, but still present)

- I always suspected perhaps I had seasonal affective disorder as I always go through cycles of ups and downs throughout the year. Typically in the fall I have lows and other times of the year highs and OCD like symptoms. Gradually I have noticed this has become worse over the last 5 or so years, and especially lately. I feel the cycles have become much more rapid and my mood changes quicker and more drastic. I have done allot of reading on this specifically and now know that Manic Depression / Bipolar symptoms/condition originate in the same area and it makes allot of sense to me this is what I am experiencing. I suspect the Kepra has added to this frustration. Daily I feel I now go through lows of anger/frustration and lack of hope, then into a mania where I need to organize things, talk quickly with many idea and also feel a bit like I'm on cocaine or something at times with a pacy heart and racing thoughts. It's really not enjoyable at all. I know I have always had these tendencies but now I feel it has just become worse and more difficult to manage daily or to be myself.

- Anxiety on and off through the years (I am generally pretty restless and can't sit still as well)

- Sleeping difficulties. I have always had issues sleeping, I am very restless and often wake many times in the night. I usually dream every night. I also get hot flashes throughout the night.

- Hit by lightning? Not sure if this is relevant but I was hit indirectly by lightning when I was 12. I was always curious if this may have anything to do with my abundance of nervous energy?

- Previous B12 Deficiency - I used to get shots for it, however currently my levels are okay

- TMJ issues - have limited jaw movement and pain over the last 4 years, again not sure if it's related

- Smoker - half a pack a day for 8 years


I have a feeling allot of these issues I have had my whole life and those that have become worse as of late, must all be connected to the activity in my temporal lobe. Through allot of forum reading I have found others with stories that seam to line up. The only exception being the fact I was hit by lighting, I can't find anyone with a similar story and still wonder if that has anything to do with anything? My biggest concern is finding a path / medication that will help with ALL issues, or at the very least not exasperate the other issues while treating the epilepsy. I do not want to be on another medication like Dilantin that made me a complete stupid-zombie that could nt think straight or function. I do really like the idea of a CBD Tincture, and wonder if anyone has experience with it or any other medication that helps with seizures and the other conditions.

I would really appreciate any help you may have in being a detective to my situation. I really do feel like many of these issues may be connected as everything I have ever had in life seams to stem from nervous system issues / brain. I am also very curious if there is any research into conditions lighting strike survivors might have had and if any of they conditions I have, mainly including the seizures and manic depressive symptoms, are an issue for anyone else in the same situation.

Thank you so much, I look forward to hearing from you all if you have any input.

i get what you mean by the seizures, i get the same kind too, in fact i get them almost every day varying in intensity. the mania, ocd, recurring anxiety all coincide with mine too. my dx is also TLE.

tobacco smoke is stimulating and although i'm not sure, i think it would only make you more prone to seizures, then again i was fine with my adderall habit so maybe it's not THAT significant.

i also find marijuana relaxing, although i can't obtain it legally in the great state of texas (/s)

so yeah, it seems to be related to all this.
 
before i forget. this totally hit me when i got off the computer.

estrogens are pro-epileptic. your birth control may be worsening your condition, you may want to talk to your doc about it.
 
No, the depo-provera is the kind of b.c. that isn't estrogen based. It can actually help people who are triggered by estrogen fluctuations.
 
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