Moose here - again. Following on from my epilepsy thread.

[moosemama]

Hi folks, we were up to 995 posts, so I thought I'd better start a new thread

[MerryCouthyMows]

So, I go for the MRI - turns out that the results of my first MRI had been 'mislaid', (probably by struck-off GP's surgery...)

Nothing abnormal detected. OK. Fair enough.

EEG came back with 'some unusual wave patterns, but not enough to suggest epilepsy'. It was a 20 min appointment. I hadn't had a seizure for over 48 hours, so I was neither ictal or post ictal.

Go to see 'flashy' Neuro at Queens. Flashy Neuro talks about catamenial epilepsy and explains that he would like to do a vEEG as an inpatient at Queens (60+ miles away, remember) to get a better idea of how to treat my epilepsy).

I then explained that due to childcare issues (I.e. I have none...), a 4 day, 3 night stay in a hospital 60+ miles away was impossible. I asked if it would be possible to do an ambulatory EEG instead, as that would enable me to continue to care for my DC's.

He said no. And he told me that as I was 'refusing' to follow HIS treatment plan, he would have 'no choice' but to dx me as NEAD.

Without any form of longer term EEG monitoring to fully rule out epilepsy first. Against all treatment and diagnostic protocols for epilepsy / NEAD.

[MerryCouthyMows]

So, I got sent back to my GP. Who decided to put me on Gabapentin. That was at the start of 2008.

So I popped the Gabapentin, assuming that the GP had given them to me because he disagreed with the Neuro, and HE thought that I DID have epilepsy.

The Gabapentin helped for about 4 months. But then I started getting worse. I was having daily seizures, lots of absences and at least 3 atonic seizures / drop attacks each week. So the GP put me on Topamax as a adjunct to Gabapentin. (Wannabe Neuro, I think now...)

Topamax gave me a temporary nystagmus, that sudden onset eyesight loss thing, AND have me symptoms of bipolar, which I had NEVER had before - I even got threatened with being barred from the school site whilst trying to deal with a severe injury my DS1 had sustained through bullying at the school, because I couldn't control my emotions.

(Though that is partly to do with the fact that the HT is a power hungry, lying on official forms bastard...)

So, the Topamax went. Annoyingly, despite the raging stupids it gave me, and the weight loss (which was nice), it was the ONE drug that controlled my seizures fully...might have had EVIL side effects, but by God did it work for me!

I was still on the Gabapentin at this time.

[MerryCouthyMows]

I stayed on the Gabapentin until the end of 2009. Every 4/5 months, my dose would have to rise, as I would get 'breakthrough' seizures that steadily got worse until the dose was raised by the GP, then I'd have 4/5 months where my seizures (even the 'absence' type ones) would drop by 3/4 in frequency, then the whole thing would start over again.

In mid 2008, I fell pg. (not with DS2 & DS3's dad, in a relationship I had while we were not together). I was still on Gabapentin at the time. I did loads of research about being on Gabapentin whilst being of, nothing odd was indicated.

When I was 19w5d, I lost my baby boy. The same day, my partner at the time left me, telling me that I had killed his baby. Abusive git that he was - I've had no contact with him since that day.

I (understandably) was VERY depressed. Didn't do anything at all, didn't open my post, don't even remember that time much, I was in a foggy haze. The foggy haze lasted about a year, to my shame.

While I was in that foggy haze of depression, I stopped getting my repeat prescriptions from the GP surgery. Nobody even noticed!

So, I titrated down off the Gabapentin, after having read watched online. I knew that if I didn't have epilepsy (so the Neuro's were both telling me...), then I didn't need AED's.

I WAS still having seizures, but I couldn't be bothered to deal with it at the time, I just tried to cope.

I then got back with DS2's dad, and VERY quickly fell pg with DS3. So I now wasn't taking any AED's. The whole time I was pg, my seizures were NON-EXISTANT. Ditto for all the time I was bf, until my periods returned after a year.

As SOON as my periods returned, so did my seizures. This was in February last year.

Soooo, knowing I had a 1yo to cope with, on my own (Ex left when DS3 was only 4mo), I went to see my GP.

Who put me back onto the Gabapentin.

It helped with lowering the frequency of the seizures, though not during the week before my period - that is when my seizures increase twofold (at least).

[MerryCouthyMows]

I tried to cope like that for as long as possible.

In August last year, I started getting joint pains that were so bad I was immobile for 3 days a month...just before my period...and spent half the month dosed up on painkillers, just to move and get through the day.

I tried to cope just using paracetamol & ibuprofen, but it got to the point that I needed something stronger on a few days a month, so I started using OTC cocodamol. I stuck rigidly to the 'no more than 3 days' thing for codeine though.

After a couple of months like that, I decided to visit a GP. I saw a new GP at that surgery who had me blood tested for rheumatoid arthritis. Because the basic test came back negative for rheumatoid factor, that GP told me it couldn't be rheumatoid arthritis.

Didn't refer me on anywhere though!

By the end of February this year, my seizures were ramping up again, so I went back to see the GP, and he raised my dose from 600mg/day to 900mg/day. No referral anywhere, despite my seizures having been back again for a year by this time.

[MerryCouthyMows]

Will finish the most recent part of my epic saga later on - I have to go & pick up the DS's from school and I also have parent's evening tonight.

Sorry for filling the thread up!

[moosemama]

I really don't know what to say or where to start.

Consultant (locum) initially just wanted to ask me why I was there when I have had all the tests and clearly don't have MS - including going through my MRI results with me and telling me that multiple lesions throughout the hemispheres and subcortical white matter is considered to be a normal MRI result for someone of my age by him.

I said I know I don't have MS, I was on a 12 month follow up at my last appointment in September, but I had what they think was two seizures in one night in November and the AMU ordered tests and sent me back here.

He then asked if anyone had seen the seizure, accused dh of being a negligent husband for going back to the restaurant and leaving me when I was ill and therefore not seeing the 'event' (he was joking - I think) and didn't pass comment on the actual seizure at all.

He asked if I had had any more. I said no, but have been having lots of odd, frankly scary events in the night, always on waking and that having noted them down in my diary, I have noticed they seem to cluster around the week before my period, are always between 4.45 and 6.00 am and that there have been 23 of them since 18th December 2012.

He said they did not fit the pattern or symptoms of a seizure, there is no indication from any of my tests of any abnormality that would cause seizures anyway and that other options may be migraine or even cardiac black-out - although they didn't present right for either of those options either.

He said having done all the tests and having a clear MRI, the next step would be to try me on triliptophans? (he had a really strong accent and neither dh could understand a lot of what he said - be both asked him to repeat that and still neither of us got it) but that with no clear 'evidence' of seizures he would be reluctant.

I said I didn't want drugs and I was only there because I'd been bullied into it by friends and family, as I normally don't bother with doctors for myself. He raised an eyebrow to this then just repeated what he'd said.

Then it went quiet, as if he was expecting us to say something, but neither dh or I had a clue what. So, dh said right so you are saying the night time episodes don't appear seizure like and you don't feel meds are appropriate, dw doesn't want meds anyway, so we do nothing?

He said, no that's not what I'm saying. I'm saying next and only course of action left to us is to try tri?? whatevers and see if it stops - but that I am not keen. We have done all the tests we can do on you and I am satisfied there is nothing on the MRI or other tests to suggest a physical cause for seizures.

I then said well what sort of information do you need from us to make a better judgement on what might be going on, could I just go away and keep a clear record of what happens? He said yes that would be helpful - then finally asked dh what he witnessed when I have my nocturnal episodes. I also told him about the CRPS which he deemed irrelevant - I said I thought it would be, but thought I should mention it anyway. I also pointed out that I am peri-menopausal and that we'd noted the clusters of nighttime events around my period and wondered if perhaps whatever is going on is hormonal, rather than neurological - he said that is possible but we can't know. I also pointed out that most of my events have been following several nights of poor sleep.

After speaking to dh, he said he still felt the nighttime events didn't seem to be seizures, but he didn't know what was going on. He said a sleep deprived EEG is not indicated because my first EEG was clear, likewise with a video EEG in hopsital, but that he would order an ambulatory EEG to see if we could catch a nighttime event and that he wants dh to try and video some and that with that plus the diary he would review me in the future.

I said can't we just leave it then, if you think I'm not having seizures and you've already said I have nothing life-threatening based on my test results, so why carry on? He said that there clearly is something wrong, because I am having 'events' of some kind and whether it is psychological, hormonal, migraine, cardiac or something else, he can't say. Then just before I walked out he asked me if I have a stressful life. I said I have had stress over the past couple of years, but that I was well at the worst of it and it is over now. He nodded.

... and that was that.

So, basically he doesn't believe I had the TC in November, because no-one was there to see it and he thinks all my other neuro symptoms are in my head.

[moosemama]

Oh - and he told me nausea was not usually associated with seizures, so the fact that my aura-ey type pre-event feeling includes nausea and the feeling like I might be either sick or have an upset stomach precludes it being seizures.

[MerryCouthyMows]

Well, that's me out too - because I get that too.

[MerryCouthyMows]

Why are Neuro's such pompous arses?!

Surely there are clear 'pathways' for doing these things, like a flow chart saying stuff like 'does the patient have X symptom?' 'Yes' 'do Y test'.

'Does patient have Z result?' 'No' 'then do G'.

Why do they have to be so bleeding dismissive, have the people skills of Atilla the Hun, and ignore what you are trying to tell them and be unclear about your treatment options?!

[MerryCouthyMows]

Just about to do parents evening. Should be fun.

[moosemama]

I think that's it thought Couthy, they only have flow charts, so if you are in anyway atypical in presentation they can't cope, because they are unable to think for themselves outside the box.

Good luck at parents' evening.

I have ds1's IEP review tomorrow.

[moosemama]

Ah, well I have been told I can't take Triptans, because I collapsed after taking Imigran when it first came out. I was one of the first people to be given it, way back when it came in a space age plastic case with a little pill pod inside. So, he's obviously read my notes then.

Dh told him I appear conscious but can't communication properly. I can answer in single words, but not have a conversation and that the pattern is consistent every single time it happens.

Locum was adamant that 23 events in 3 months is far too many for it to realistically be epilepsy - didn't dare tell him that each of those represents a day rather than and event and that most times I get 3-4 bigger ones and then 3-4 small ones to follow.

I have joined an international epilepsy forum to see if anyone there can offer any advice or suggestions.

I've told dh I feel like just giving up. He says that seeing as the locum said there is nothing diagnosable in my test results he is going to go back to the broker and find a private healthcare policy for me, so that we can go that route if things get worse. Meantime I am toying with just sending them a letter to go on file saying I have decided to go private, so don't bother with the ambulatory EEG. I just can't be doing with their time-wasting, patronising crap anymore, I want to get on with my life.

[moosemama]

I'm inclined to just give up though Leonie. I've coped this long without them.

Dh wants to start a private plan, so it's there if things get worse. I don't want to see anyone else at the moment, I've had enough. Ds1 has his school place and I just want to get on with living a normal-ish life for a while without all these time-wasting appointments and tests.

I have successfully predicted the outcome of every test and appointment I've had, so no more. I've had enough.

[moosemama]

Leonie.

I am just so bloody tired this evening and feel like I've wasted another day - not to mention a whole afternoon being incandescent with anger about it all.

Dh is away tonight and back late tomorrow - I think he's quite relieved about it after taking me to lunch and listening to my ranting.

[MerryCouthyMows]

I'll finish my story in a sec...it gets worse!

Moose, I have all the same symptoms too. I've no major doubts that it is epilepsy in my case, I have even been told as much by epilepsy action myself in the past (I'm going to look out their phone numbers tomorrow or Thursday - tons of other time sensitive stuff to do too), and I'm sure of it in your case too.

We will get there in the end.

Leonie - I have to be honest, despite the side effects, Topamax was the one and only med that FULLY controlled my seizures. And it DID.

They don't call it dopamax for nothing though...

[MerryCouthyMows]

Continued :

Then I had the hinky smear test done. So I went for the original colposcopy. Couldn't do it due to the pain, then had all the seizures afterwards.

My description of what I remember from that day : I went and sat in the waiting room after the aborted attempt at the procedure. I was filling in forms when I got that rising feeling, the feeling of 'dread'.

Then I started getting 'pins and needles' in my eyes. It's not actually pins and needles, but it's like my eyes go 'fizzy'. There's millions of black dots, that start at the outside of my eyes and then crowd into the centre, and then as soon as my vision has gone black, that's the last thing I know. While this is happening, if anyone is trying to talk to me, it is almost like they are right next to me to start with, but they are getting further and further away, sounding like they are running away from me into a tunnel, then I can't hear them.

It all happens in the space of a minute though. (This is the case with all my seizures).

Then the next thing I know, I'm on the floor with loads of people standing over me.

I have an acute need to avoid any fuss, I just want to get up and get on with things, though it's almost like I can't 'order' my brain. I try to get up, but still feel 'woozy'.

Then I get a brief snippet of being in a wheelchair in the waiting room.

Then a brief snippet of being in another room.

Then of being really shouty saying "just get off me, let me sleep, I need to sleep"

Then waking up on a couch in a recovery room.

That's my memory of those seizures that day.

[MerryCouthyMows]

My Ex's written account of the same event? :

When she was filling in the form, she said she felt dizzy. Her eyes rolled back in her head, her tongue lolled over to the left side, and she slumped down for about 2 mins then her eyes stopped rolling and her muscle tone improved.

After about a minute, her eyes started to roll again. She slumped over and her tongue lolled over to the left side again. This lasted for about 3-4 minutes.

I called a nurse and two nurses came to assist. The nurses tried to help me by shaking her and calling her to try to get a response but all she did was groan. After a couple of minutes if this, her muscle time improved and her eyes stopped rolling back in her head. She looked very confused.

Then her eyes started rolling again and her head slumped to the left. Her tongue lolled to the left too, and she made a 'slurpy' sound, like she was trying to breathe with her tongue in the way.

Both legs started to twitch slightly, but it was more obvious on the left. This lasted about 3-4 minutes, during which me and the nurses put her on the floor in the recovery position, on her right hand side.

Her eyes stopped rolling again. She lay on the floor for about 2 mins. Her muscle tone improved but she was not with it at all. It took about 5 minutes altogether, with getting her in the recovery position on the floor and spending 2 mins trying to wake her up.

Then her eyes rolled again, her muscles slumped, and her tongue slumped towards the floor, and she was groaning.

These last two were witnessed by both nurses and the Gynae consultant, Mr. Blahblah.

After a few minutes, she seemed more with it, and she started trying to ask done questions, but confusedly. She asked "what had happened, had she had a seizure?"