My long winded intro!

[Plingie]

Hello Everyone,

Thank you for creating and being a part of what looks like a supportive forum. I've been searching online for information, support and clarity for some time now and I'm just making myself feel worse!

I think, if you all will humour me, I'll write out my 'story' and then you may see why I'm scared, confused and in search of answers.

I'm a 30 year old woman with two kids, living in New Zealand. We get free medical care, FYI so that's good. Any neuro visits are free, meds are $3 per perscription.

I will refer to the episodes I have been having as seisures, though I have no idea if that is what they actually are.

Before now, the only loss of consciousness (LOC) I have experienced has been run of the mill fainting - ie as a teen, I'd get too hot in the shower and faint, I fainted when getting my ears pierced etc. I would feel sick, my ears would ring, I would see black splotches and then I'd black out.

Years went by with no faints and I never fainted excessively anyway. I had two kids and after the second I went on Venlafaxine (aka effexor) for depression/anxiety. I put on weight and wasn't overly active or fit. I then got pregnant with #3 in 2012 and at 28 weeks I had my first 'seisure'. I'd been having spells for a while - where I would remain conscious but I would suddenly fear a sense of doom, my eyes would go wide and everything looked so unfamilar.. like it was a dream or memory. I would then get a hot rush all over and end up very sweaty and panting. The whole time I was in control of my thoughts, movements and speech etc but not my perceptions.

Then one day this same sensation started while cooking dinner. I put my head on the counter and then blacked out. I woke on the floor, in pain from hitting my shoulder blade on the dishwasher. I called my midwife who suggested I got o A&E.

They admitted me for a few days, mainly because it was a Friday and I has to wait till Monday for an EEG. During this time I had heaps of "spells" but no LOC or anything else.

They discharged me and told me to go to my GP if they happen again.

They stopped. I put it down to the Effexor causing them because it's a shit of a drug! I didn't go to my follow appointment because they had stopped. I had baby, who sadly was stillborn but it was a cord accident, so no illness or injury that could cause the seisures.

I got fit and healthy and got a job and all was well. I then had another one with the same 'spell' to start it but ended with LOC and me falling off my chair and hurting myself. I didn't report it to my Dr because I figured it was a one off. I talked to my Dr about weaning off Venlafaxine and I successfully did so. Since weaning off I had no seisures or spells... not even a whiff of one.

The only odd thing was one night, I can't remember how long ago, I woke to a loud static noise in my head, I felt like my eyes were rolling back (but have no idea if they were) and had a visualisation of a large wedge of static (like form a TV) inside my head. It was LOUD and very odd!

until recently! I'm still fit and healthy and on no regular meds. I'm pregnant again, 20 weeks currently. A few weeks ago I had that familiar feeling of something coming on, a couple of times. Then BAM four big ones in one night! They all start with that same sensation I described earlier and a 'rush' type feeling like when you remember that you've forgotten something important - like a sinking feeling. Then I black out.

My husband said 2 out of that four looked different. Two looked like a faint - where I pass out for a couple of seconds then regain consciousness again. the other two were weird - I went stiff (and got a sore foot from kicking the table as I did so) and although my eyes were open he could only see the whites of my eyes. I made odd grunting noises while breathing.

We went to A&E again and I was admitted for two days. Bloods were fine, EEG showed nothing. No seisures or spells while in hospital. I was told no more driving and that I am to come in for follow up in 6-8 weeks, but to call if I have any more.

So the other day I had one of the usual 'spells' during the night and one that was unusual. I woke hearing loud voices in the livingroom, like a party happenig. But at the same time I was thinking "that' really silly, there is no one there". Of course this may have just been a dream

The next day I had another LOC episode. Sitting on the couch I had that familiar 'spell' feeling coming on and then I have blacked out. I wake up still on the couch and panic, fearing I have been asleep for hours. When I wake from a LOC episode I'm fearful and confused but only for a minute. I soon remember the lead up and figure out what's happened.

I called my neuro and I'm going in on Tuesday instead of waiting for 6-8 weeks.


It's all SO confusing There are a variety of things happening and they don't seem to fit with seisure types I read about. The neuro hasn't said epilepsy - the diagnosis on my discharge papers was "unusual turns, vasovagal vs epileptoform?". Though he did say if they continue I will be looking at MRI and/or trialing meds to see if they stop.

So I don't know if they are seisures, faints or something else entirely I don't know if I have something very sinister going on in my head or if I'll just go on meds and be all better

So that's my long winded introduction and explanation! So sorry for prattling on!!!

 

[SlimBlue]

Welcome to CWE, you're right it's a great site- so supportive, full of advice and information, where you can find real empathy from people who just get it.

No need to be sorry for a long intro either

It does sound like you've been having simple partial seizures (the rushing sensation,fearfulness, perception distorted) for a while, which have begun to progress into complex partials (the LOC, confusion) as untreated E has a habit of doing

I'm very surprised that your doctors have not diagnosed this earlier as you're displaying classic symptoms. But then, we're used to having poor diagnosis/treatment by so called 'medical professionals'..

Check out that link to a thread here describing the different types, and see if any of the symptoms sound like your experiences.

 

[Nakamova]

Hi and welcome Plingie!

Your episodes do sound like they may be seizures, and because of the timing, I would say there's a good chance they are at least partly catamenial (linked to your cycle and/or triggered by spikes in estrogen). Some women develop seizures during adolescence and also during pregnancy due to the fluctuations in estrogen levels that occur.

It might be helpful to both you and your neurologist if you can keep a diary to track when your seizures/episodes are occurring. A diary can give a sense of if your seizures are changing in frequency/duration/kind, and potentially help you look for triggers as well. Make sure you ask your neuro about the possible estrogen connection. There are some treatments (such as progesterone lozenges) that have shown promise in reducing seizures triggered in this way.

Best,
Nakamova

 

[Plingie]

Thank you both I have started noting in my diary when I have them and also significant events that may lead up to them - IE I had a terrible stomach bug the day before I had two large seisures and I didn't sleep well at all.

I agree that they sound like seisures/epilepsy but there must be something that the neuro is hearing/observing that suggests otherwise to him? I think they will take it more seriously when I go back on Tuesday, because up until now they may see it as 2x bouts of weird spells during pregnancy (even though I have told them I've had others outside of pregnancy) that go away or are harmless.

I'm also a fairly bubbly, happy person so when seeing them previously I'm 100% fine when they see me. But now I'm scared and upset because this is ongoing and awful I think I need to tell them that I find this all very scarey!

Is it common to have your seisure types change? I feel my symptoms are a little from one type, a little from another and they are changing - it seems odd.

 

[Fedup]

Plingie

Yes it can happen that seizures change, usually not for the better. Its normal to be scared, why wouldn't you be, being scared of the unknown is very normal but you are going to get answers when you visit the neurologist. Seizures change usually with the person and how the person changes.

Ask your neurologist all the questions you need answered.

 

[Plingie]

Thus far the neuro doesn't even seem convinced that these are seisures, which is what I find really scarey. It's such an extreme thing happening in my brain that it can't just be me feeling faint!

 

[Fedup]

Plingie

To me it sounds like your neurologist is not sure of a lot. You need to explain exactly how you feel, being scared and worried is a start and ask him what exactly he thinks the problem is and if you have any doubts or still think he is not taking things seriously, find another neurologist, one you trust. Its important you trust your neurologist.

Being honest if it was me I would be looking for another neurologist.

 

[Plingie]

I don't think I can go to another one? Here you get a referral to the clinic and take who you're assigned, though I could ask for a second opinion maybe or go private and pay for it

 

[Fedup]

Plingie

It works the same way with me the doctor refers you, so yes I would ask for a second opinion. For me when I have to get a new neurologist because the old one retires I always try to find out about my new neurologist and I ask my doctor for his opinion as well.

 

[arnie]

Welcome! You have come to the right place and have gotten a lot of good advice so far. I'm glad you're starting to keep a record of when your episodes happen. That's very important to do. I would encourage you, however, to use the following site instead of just a paper entry. It's much more useful in seeing patterns to your seizures.

https://seizuretracker.com/

Best of luck!

 

[Nakamova]

The neurologist hasn't said epilepsy - the diagnosis on my discharge papers was "unusual turns, vasovagal vs epileptoform?"

It looks like the neuro [wisely] wants to rule out vasovagal syncope, which is a variety of fainting related to a drop in blood pressure. It can closely resemble seizures and also cause them. You can read about it here http://en.wikipedia.org/wiki/Vasovagal_response to see if it's sounds like a good match for your symptoms.

 

[Plingie]

Yeah this is what I'm thinking too. He said my recount of events sounds like seisures but eye witness accounts sounds like fainting/syncope. It would also make sense to have more while pregnant because your blood volume etc changes.

BUT what confuses me is the hung over feeling afterwards. And my blood pressure is always fine (it was tested lots in hospital). I've never had these episodes happen while I'm up and active (ie walking), but have when standing still or sitting down. It's mainly when sitting down. And usually when I feel it coming on, I lie down straight away and I still black out... which seems odd.

 

[Nakamova]

Since sometimes vasovagal syncope causes seizures, may be that's what is happening sometimes for you. Has he a cardiologist had you do a tilt test ? See http://www.mayoclinic.org/tests-procedures/tilt-table-test/basics/definition/prc-20019879

 

[valeriedl]

BUT what confuses me is the hung over feeling afterwards. And my blood pressure is always fine (it was tested lots in hospital). I've never had these episodes happen while I'm up and active (ie walking), but have when standing still or sitting down. It's mainly when sitting down. And usually when I feel it coming on, I lie down straight away and I still black out... which seems odd.

Seizures can happen when you are doing anything - sitting, standing, walking, laying down, sleeping, etc.... Not everyone is the same when it comes to having seizures. There are people who only have seizures in their sleep and some who only have them while they are awake. Some people have both.

When you feel a seizure coming on there's usually nothing that you can do to stop it from happening. So when you get those feelings you are doing a good thing to lay down because when you black out you won't fall.

After most of my seizures, I have simple and complex partial seizures with about 2 grand mals a year, I very rarely know I've had it or know what I've done during it. So when I come out I'm just as normal as could be.

After most I do get a horrible headache and I'm usually very tired. Depending on how bad the seizure is I may want to sleep for a few days, they just take a lot out of me.

It does sound like you should start looking for a new dr. Ones who won't listen or believe you are the worst. I had another medical problem once, not epilepsy related, and when through about 4 drs before I found the one who finally figured out what was wrong.

This is a great forum. I've gotten so much information and help from it. It's nice to know that there are other people who are going through the same problems as you are and they understand what you are talking about. You don't have to try and go into crazy detail like you do when talking to someone without epilepsy and have them still not understand you.

Nice to meet you!

 

[swimmer]

Hi,
To me it sounds like you have epilepsy due to hormonal fluctuations. I started having the "deja vu" partial seizures when I was either ovulating before my period, or when I was first pregnant- and the same sensations with all 3 pregnancies. Mentioned this to my gynocologist and she looked at me like I was crazy. Then, after menopause, boom- first grand-mal seizure at night- and then another one a month later and was put on lamotragine (tried Keppra- horrible)and didn't have another. I only started having more seizures when I tried to taper down the drug to nothing (plus went on an extremely long bike ride and was exhausted)- so with 4 seizures, I was then diagnosed as an epileptic. I don't feel epileptic (whatever you're supposed to feel like) and I do whatever I've always done- drive, swim, bike, etc. but have ruled out open-water swimming. The lamotragine seems to work, and I'm on 150mgs per day. Is anyone else out there on this and is this a lot or a little? I feel out on my own with this- and am maybe in denial still.

 

[Plingie]

Here in New Zealand it's illegal to drive if you're epileptic, unless you've gone 12 months with no medication changes and no seisures. :S

Mine certainly does get worse with hormonal changes.

Since doing my intro I have been properly diagnosed and put on lamotrigine

 

[swimmer]

Hi,
Glad to hear that you're feeling better- lamotrigine really works. I was first put on Keppra and felt exhausted (I think that the Dr. prescribed way too much for me), but on lamotrigine, things have been OK. Do you mind me asking how much you're taking? I'm still new to this and am balking at having to take it the rest of my life, as it seems I'll have to.

 

[Plingie]

I have to wean on to it. I'm not sure what the end goal is. This month I'm weaning up to 100mg, not sure how much more after that

 

[swimmer]

Interesting. I'm on 150mg, after asking the Doc how low I could go and She was willing to let it go to that dosage. I was told to stay on it for 2 years and then I could taper down. It was only when I tried to taper down to nothing that I had another, but maybe 150mg is too much too. It's a drag to see the side-effects of this drug (or any drug for that matter) and it would be nice to not have to be on it forever. I hope that you can stay at the low end. Sounds like your Dr. is wise to slowly increase it to see what you actually need. I've also been, lately, taking Estroven, supposedly naturally derived from soy isoflavones, black cohosh and magnolia bark- something I found at Trader Joes- a market nearby. It's supposed to be used for "menopause relief- from hot flashes and night sweats" which I no longer have, but I figure that if this is a natural "hormone-replacer" by activating the same cells as normal estrogen, etc., then maybe it can't hurt to have a constant amount in my body. I've also been taking a lot of B vitamins lately, since Lamotrigine inhibits uptake of vitamin B, supposedly. I think that I'm feeling better, stronger with more vitamin B. So all, just suggestions, but still trying to figure things out. I've also tried to eat more sweet potatoes (native american women used to eat these to help relieve hormonal fluctuations) but one can only eat so many sweet potatoes!

 

[Nakamova]

Hi swimmer -- I'm also on lamotrigine. My neuro was adamant that I needed to be on at least 300mgs of lamotrigine (which seems to be the default in the U.S.; it's lower elsewhere in the world). I stopped at 250mg however and then tapered down to 175mg on my own. I've been seizure-free at that dose for almost seven years. Recently however I started experiencing "blips" -- generalized seizures that last no more than a second -- so I ramped back up to 225mg. I suspect that it has to do with batch inconsistencies in the generic form I use (made by Zydus), but there's not a whole lot I can do about it.

I've also been, lately, taking Estroven, supposedly naturally derived from soy isoflavones, black cohosh and magnolia bark- something I found at Trader Joes- a market nearby. It's supposed to be used for "menopause relief- from hot flashes and night sweats" which I no longer have, but I figure that if this is a natural "hormone-replacer" by activating the same cells as normal estrogen, etc., then maybe it can't hurt to have a constant amount in my body. I've also been taking a lot of B vitamins lately, since Lamotrigine inhibits uptake of vitamin B, supposedly. I think that I'm feeling better, stronger with more vitamin B. So all, just suggestions, but still trying to figure things out. I've also tried to eat more sweet potatoes (native american women used to eat these to help relieve hormonal fluctuations) but one can only eat so many sweet potatoes!

Even natural foods that are estrogenic can trigger seizures in folks whose seizures are sensitive to estrogen fluctuations, so you should be careful with any supplements until you know how you react to them. Menopausal catamenial seizures are more likely to caused by drops in the progesterone that ordinarily counterbalances estrogen. Both hormones start to decline at this time, but if progesterone drops faster, then the estrogen can be triggering.