Suddenly disappearance of seizures...

[Itr786]

Hi,
I'm a 32 year old male, I was diagnosed with temporal lobe epilepsy about 5 years ago, I begun having seizures about 7-8 years ago.
The first seizure I had was whilst I had a cold, lying in bed, I didn't know what it was, but epilepsy wasn't even on the radar!
I put it down to my flu/cold, and carried on my way.

My memory is alittle hazy, but I'm pretty sure nothing happened for 8-12 months before I had another seizure.
Slowly but surely these 'episodes' became more and more regular, and they where also becoming more 'intense', so eventually I decided to go see my GP, who referred me to a neurologist.

As I'm sure anyone suffering with partial seizures, it's a VERY difficult thing to explain to others, probably explains why I took soo long to see my GP.

After an eeg & mri scan, I was diagnosed with TLE, and begun the course of medications that I'm still not settled on.
I've tried carbamazepine/lamotrigine & keppra, on varying dosages/combinations,
Unfortunately none have helped with controlling my seizures. :sad:

Over this past 12 months, I've gone through the process of all the relevant scans/tests to determine If I'm a candidate for surgery, I'm coming to an end of that process, and though it's not set in stone, my neurologist has told me I'm almost certain to be a candidate.

Whilst going through this process, I've still not given up hope of finding a medication that I could settle on and that controls my seizures, but I've had no luck.

The pattern to my seizures have been quite predictable over the years...

1) I'll have a handful (3-5) seizures over the course of afew days,

2) Then I'll be seizure free for 4-5 weeks,

3) Then I'd have another cluster of seizures. It's been like that for many years. Normally the 1st seizure I'll have will the worst one, and the last one will be relatively 'mild'.
The only change over the years is that the seizures have become more and more 'intense'.

Back to 2015, my last cluster of seizures started at about the normal time, but something felt a little different, they weren't anywhere near as intense as they normally are, but instead of having my usual 3-5 seizures, I had 10 over the course of 2 days, all of which where relatively mild.
BUT here's where it gets even stranger....
Those seizures took place between 08-10 September, which by my calculations makes it 11 weeks since my last seizure!? :dontknow:


I'm not sure what the reason for this is, I've not done anything different to what I'd been doing prior, I'm on the same medication, eating pretty much the same food, no more/less exercise, sleeping patterns not changed.

I'm very confused and can't make sense of what's going on? onder:

Does anyone have any ideas?

The longer it goes, the more I'm frightened of how bad that first seizure will be when they finally come around...

 

[Fedup]

Itr786

Calm down, take a minuet, remember stress and worry can trigger a seizure. It's good that its been 11 weeks since your last seizure, one thing you need to realise, which I didn't was that things change as the years roll by (nice way of saying, getting older) that is something you need to consider. Eating pretty much the same, would suggest that something changed. I do not think I will ever make sense of what is going on either, it is bloody confusing.

Maybe something has changed and you just need to think about it or maybe you are going to be lucky and things will get a little bit better for you. If I am very honest with you, some of this you have to roll with the punches. Being frightened is very normal but try not to be or to be worried, I know its easy for me to say, but try.

 

[Ruth]

Be thankful. It would be great to go seizure free for a time, for no reason.

 

[toro]

AHA! I knew I would find you! I am NOT making it up! Everyone told me I was making up the cyclical aspect, but now I have living proof (or an internet troll). I just wish there was a prideful boast emoji...

My epilepsy is effectively identical to yours (gender, current age, age onset, cycle times, type, etc.) ESPECIALLY the cycles. My doctors thought I was making it up. Other people thought I was making it up. Suck it skeptics!

Sorry. Catharsis is important to me. On to you.

Once I started on lamictal my seizure frequency dropped dramatically. The smallest changes in my lamictal dosage has had very large impacts. For example, a change of an extra 75 mg a day effectively stopped my seizures.

I think the cyclical aspect of it makes it a bit more scary as you sort of expect it to be "right around the corner." The intensity doesn't build up with time though.

I'm sure you've noticed that some seizure periods are worse than others. That's it. In my experience my stress level had an effect on the intensity and number I would have within that seizure window - though it by no means was a dominant factor. It never seemed to bring anything on though.

As an example, when one family member died, I was still having seizures regularly and that period sucked. I think I had one day where I had 8 seizures and my migraines drove me INSANE.

Earlier this year, when another family member died, I wasn't having seizures, and even though life was stressful beyond belief, it didn't really trigger a seizure period (we should make up a term for these cyclical groupings of seizures).

I was seizure free for four months, then I had a tiny little cluster - followed by lots of swearing and binge-watching Monty Python. Now, I've been seizure free (we won't get technical) for 10 months.

I would not worry about it. If anything, it sounds like it's getting better. If you do have another cycle/period/oscillation (we need a term), you've had them before, you'll get through it just like you did the other ones.

 

[Belinda5000]

My seizures can stop for several months at a time; I can go between 1-3 months and not have any. My sz's start back for no reason at all. If I make it to the 7th of this month it'll be 2 months for me. I've never gone longer 4 1/2 months seizure free in my life.

 

[Ruth]

AHA! I knew I would find you! I am NOT making it up! Everyone told me I was making up the cyclical aspect,

My epilepsy is effectively identical to yours (gender, current age, age onset, cycle times, type, etc.) ESPECIALLY the cycles. My doctors thought I was making it up. Other people thought I was making it up.

I think the cyclical aspect of it makes it a bit more scary as you sort of expect it to be "right around the corner." The intensity doesn't build up with time though.
Earlier this year, when another family member died, I wasn't having seizures, and even though life was stressful beyond belief, it didn't really trigger a seizure period (we should make up a term for these cyclical groupings of seizures).

Hi toro, I googled male hormone cycle and this is what I found.

http://www.medicinenet.com/script/main/art.asp?articlekey=53725

Irritable Male Syndrome

Stressed out? Grumpy?Moody? If you're a guy and these words describe your mental state, you may be suffering from "irritable male syndrome." Yes, Ladies, even men can fall victim to hormone fluctuations.

http://www.goodmenproject.com/featured-content/the-good-life-do-men-have-a-monthly-cycle

Do Men Have A Monthly Cycle?

Men's hormone levels may have a cyclical nature, but the causes remain elusive.

Be patient, this one takes a minute to come in.

 

[Belinda5000]

It wouldn't last and I was right a seizure last night.

Not even two months did I make it seizure free; and again and again now my life is in the dumps of course.
I once had some ask me why I keep track of my sz's and was told it's basically useless to do and I shouldn't do it.

 

[Itr786]

Hi everyone,..

Thought I'd come and give an update, so I've now gone 15 weeks without a seizure.

I'm really not sure what to make of it, I've never gone anywhere near this long without a seizure for many, many years.

Because of the number of meds I've tried and been unsuccessful over the years, my neurologist became pretty certain it would be highly unlikely any future medication I took wouldn't be able to control my seizures, hence why I've gone through the whole process of having every scan/test in the book to see if I'm a candidate for surgery (which I believe I am).

It's a very confusing time, I'm really not sure in the slightest what to make of it...
My minds veering off in so many directions, "what if I'm miraculously cured", or if "finally the meds I'm taking have actually managed to control my seizures"...
Then I start thinking it's inevitable I'll be having a seizure, if not today, then tomorrow, it's just a matter of time, and so if a letter does come through the post with a date for the surgery, I should just go ahead with it...

Also being sick off work, suddenly telling my employers I (potentially) won't be needing surgery (doing a complete U turn on what they've been hearing from both me and my specialist over the past 12 months).

What do you think? I've strangly not had a date to see my epileptologist, so won't be seeing him in the near future, not sure why, I normally see him every 3-4 months

Anyone had any such experience?

 

[Nakamova]

First off, congrats on 15 weeks seizure-free!

It's normal to be confused and anxious about what this means. Seizure disorders are characterized by so many unknowns and individualized variances, I think that "uncertainty" is one of the disorder's side effects.

Note Belinda's experience above -- she's had her seizures disappear for as long as two or three months at a time and then suddenly reappear. Another member, CQ had her seizures disappear for over a decade before returning. This doesn't predict anything about what your seizures will do but it does mean that you should still be cautious. (One to two years seizure-free on meds is considered a decent track record).

As for whether to still go through surgery, that's a conversation you should be discussing with your epileptologist. Get him on the phone and set up an appointment NOW to let him know what's going on. Whether or not you've inconvenienced your workplace is irrelevant in this particular case. This is brain surgery! It's a big decision, and one you should only proceed with if you feel confident that it's the right choice. I think it's unlikely that you're "miraculously cured", but there IS a chance that -- for whatever reason -- the meds have finally started to work. You need to balance that possibility against the risks and benefits of the surgery.

Some folks become seizure-free after surgery, but others don't. Some might become seizure-free for several years, but then have the seizures return. Some continue to take meds, while others can eventually go med-free. Which is to say, everyone is different, and your docs are in the best position to give you a sense of what the most likely scenario is in your case.

 

[Itr786]

Hi,
Thanks for your reply.

Unfortunately last night it all went downhill, I had an awful night, I believe I had 7 seizures, averaging about 1 every hour. I've never had a cluster of that many in that short of time, it was truly horrendous. :crying:

Oh well, I enjoyed the 3 months whilst it lasted, I had plans of getting in touch with my hospital specialist today, get his opinion on what I should do, I suppose that's all out of the window :sad:.

 

[Kgartner]

I'm sorry that you had such a bad night after 15 weeks without seizures .This sounds so similar to my daughter. She also has temporal lobe epilepsy, and recently had a long period (for her) without any bad seizures. She wasn't completely seizure free because she continued to have some occasional mild auras, but she went 3 1/2 months without a bad focal seizure until 11/17 when she had an awful one. Like you, we hoped that maybe the meds had finally worked, or that her medication increase in August had done the trick, or something like that - but all that hope went out the window in a 45 second seizure.

Based on our experience and reading about what other people go through, seizure activity can wax and wane for no clear reason. One of the things I hate most about epilepsy is that even the "good" periods without seizures are marred by fear and uncertainty. I have actually found the most peace with acceptance - if during those seizure-free periods I can accept that they are temporary, it lessens the waiting and anxiety during that time, and the let down when that time ends.

Good luck!

 

[Itr786]

Hi,
Sorry to hear about your daughter, I'm a grown man and they leaves me in tears, can't imagine how it must be for your daughter the poor thing.

I agree with you, I hate that epilepsy causes you to constantly be on edge, without even realising it, everything in life is based around epilepsy, whatever one does, it's become instinctive the first thought that goes through my mind is, "will doing that provoke a seizure or not."
It really is a horrible illness.

I've come to accept epilepsy a long time ago, it's just that I've never gone close to 15 weeks without a seizure, and baring in mind I adjusted my dosage of medication during the 15 weeks, and also adjusted my diet, (I've tried cutting out diary, begun drinking lactose free milk, and also cut out as much wheat as possible (gluten free), though I haven't been all that 'strict' with the gluten), I couldn't help but hope!.

I have had in the back of my mind if/when they come, due to the length of not having and seizures, they will be awful, and unfortunately that's turned out to be the case.

One quick question, does anyone have stomach rumblings when going through a bout of seizures?
It's not something I've really payed attention to/noticed in the past, but it was very evidence last night with how much it rumbled?
My wife has told me this morning it's something she notices regularly when I'm going through a bout of seizures, she's not mentioned it in the past, she's probably never thought much of it, but it's quite strange...

 

[Nakamova]

Itr, so very sorry to hear that the seizures came back with a vengeance.
It's not much of a silver lining, but perhaps that makes your decision about surgery a bit clearer.

The stomach rumbles are most likely part of the seizure. Stomach issues are a typical symptom of the subset of partial seizures called autonomic seizures:

Autonomic seizures are accompanied by autonomic symptoms or signs, such as abdominal discomfort or nausea which may rise into the throat (epigastric rising), stomach pain, the rumbling sounds of gas moving in the intestines (borborygmi), belching, flatulence, and vomiting. This has sometimes been referred to as abdominal epilepsy. Other symptoms may include pallor, flushing, sweating, hair standing on end (piloerection), dilation of the pupils, alterations in heart rate and respiration, and urination.

 

[Howll]

I've got no pattern to my seizures. Had my first tonic clonic when I was 15, another at 17, a small one at 18 and another at 19. Then nothing for 6 years, had a tonic clonic in August when I had an infection, and a few simple partials while still having the infection. Then nothing again for the past four months. I'm not on meds.

My Fathers wife suffered with "drop" seizures for years, from the ages of like 25-40, never took meds either. She's now 56 and hasn't had one in 16 years. Our bodies change over time, sometimes for the worse and sometimes for the better. It's confusing!

 

[Autumn Breeze]

Digging up an old thread, I was curious about how frequent or infrequent others seizures were.

I go for long periods. I am 33, I had a seizure yesterday, a complex partial. Three weeks before that I had a TC. I have had a few partials over the last few months. It has been an incredibly stressful year. Incredibly. I had a bad TC cluster in December 2014, and had gone nearly 2 years when those hit.

I started having them 2 years before that.

My dad had seizures when he was a teenager, he only had 2 or 3. He's been on depakote since before I was born, and to the best of my knowledge hasn't had another.

 

[Porkette]

Hi,
You may be having what my Epileptologist calls "seasonal seizures" this means at certain times of the yr. a person will have more sz. I have a lot more sz. during the fall and winter compared to the spring and summer and it all has to do with the amount of serotonin there is outside. Sometimes some people with epilepsy will have fewer sz. when there's more serotonin while others will have an increase of sz. when there's more serotonin. If you are keeping track of your sz. take note and see if you have more in the spring and summer or the fall and winter, if you notice an increase at a certain time of the yr. this means you could be having seasonal seizures. Another thing that triggers sz. for me is a low pressure in the weather if it's going to rain or snow I will have sz. a day or two before the bad weather hits and that's because the air gets heavier and that in turn can effect a persons hormones and trigger sz. for them. I wish you only the best and May God Bless You!
Sue

 

[acshuman]

Breakthrough Seizures

Itr786,
A person can celebrate after they have gone for a time w/o having a seizure, but you have to also keep your 'head on straight' and don't think that you are 'cured'
I have gone several years w/o a seizure only to have one breakthrough and spoil my happiness! If you allow yourself to think you are 'cured', you could get very disappointed or depressed if a 'breakthrough seizure' occurs.:giveup:
Just saying that 'it' is possible!:twocents:

ACsHuman

 

[CQ:)]

Hi Itr786

Sorry I didn't see this thread until this morning but I have commented on some of our brain surgery posts.

Another member, CQ had her seizures disappear for over a decade before returning.

As Nakamova mentioned I did go a very long period between seizures, in fact I went 21 years seizure free. I had my 1st seizure when I was 9 months old, was diagnosed with epilepsy at 12 months & had tonic clonics on a regular basis until I was 3. I was taken of my epilepsy meds when I was 7 & spent my childhood/ teen years seizure free.

My seizures returned in 2002 when I was 24, I didn't do anything different for the seizures to return & the way I see it was it is just one of those things. When my seizures returned I was referred straight to a neurologist & he put me on Tegretol. I had an EEG the day after the seizures returned, there was a lot of seizure activity & the neuro believes I had at less 3 tonic clonic seizures, 2 at home & 1 at at the hospital. I also had an MRI which showed scarring on my left temporal lobe & I was diagnosed with left temporal lobe epilepsy.

After the seizures returned I mainly had auras, simple/complex partials & the odd tonic clonic. My neurologist tried me on a variety of meds but none helped control the partials. In late 2009 my neuro put me on Neurontin which was my 5th med added to Tegretol & Keppra (I'd also tried Lamictal & Topamax), he said there wasn't much more he could do so suggested I think about having surgery & referred me to an epiologist.

I saw the epiologist in mid 2010 who went through my MRIs & history of epilepsy then confirmed I was a good candidate for surgery. I then went through all the pre surgery tests & found out in late 2010 that I was a candidate for surgery. I had my surgery in March 2011 where they removed the scarring on my left temporal lobe.
The epiologists & surgeons all believe the scarring on my brain was due to the tonic clonics i had as a baby but aren't sure why I went 21 years between a seizure.

After my surgery I set myself little goals of how long I wanted to be seizure free, my main goal was 6 months as I had never gone 6 months without a simple partial pre surgery. I reached the 6 month goal & ended up being 2 years seizure free all up.
I started having funny feelings again in June 2013, my neuro adjusted my meds & I had a Video EEG in July last year. The VEEG confirmed my funny feelings were focal seizures or like simple partial.

When I started having the focal seizures all I wanted to do was go a full calendar month but could never get there. Last year I acheived that goal as I went the whole of August with no seizures & in total went 7 weeks.
I was so happy about that & now I've done that I no lnger set myself goals, instead I consider myself lucky for every day I am seizure free.