Hi!

[squirrel]

My name is Emma, and I'm 20 and from the UK.

After 8 years of having seizures, I've now been told it's almost certain I have epilepsy. During that time I've had lots of treatment for so-called MH problems where the seziures would just be ignored by doctors. The longer this goes on, the more I feel seizures might be the cause for many of those symptoms because they seem to occur aorund the same time. I just wanted to ask if this is a common-ish story?

I also have mixed feelings about an official diagnosis as I know when I've been put on meds for mental health, that also happen to be AEDs, I have not tolerated them at all - so I'm a bit worried about that.

Anywho, that's where I'm at in a nutshell! It would be nice if I could learn more from others about how to cope.

 

[skillefer]

Hi squirrel! Welcome to CWE. Feel free to ask questions, vent, or just chime in. As for whether you might not have MH problems but misdiagnosed epilepsy, talk to your doc. There's more than one anti-seizure med that has dual uses.

 

[nana1]

hello

Hi squirrel
welcome to CWE. :clap:Tell your Neuro what has happened in the past with different meds. You may want to writ a list of meds that botherd you, and keep it for future use.
These forums are very friendy, just ask questions.

nana1

 

[Crazy Monkey]

Hi Emma

Welcome to CWE

I am a fellow UK-er from Norwich.

Hmmm ways to cope, thats a good question as everybody has their own way to cope with their situations. I have about 50 absences a day and have infrequent drop seizures. I am a bit of a loner when it comes to dealing with my E, I have had seizures for 20ish years and have never really had any support from my family, so my way of coping was to keep it to myself, tho, I am gradually starting to get over my fear of telling people since joining CWE. I am always so worried about being judged, which has happened so many times to me.

If people start talking about things that I am restricted from doing such as driving, I will leave the room so that I don't get asked any awkward questions. I try to avoid conversations about certain subjects rather then stay in the room and feel excluded.

My seizures mostly happen around the same time, always in the morning when I get up as I am still feeling sleepy, then about 2pm ish and then late evening when I start to get tired. I know to expect seizures about these times so I avoid doing things like holding hot drinks.

Hope this helps, Take care

Kim

 

[Meetz1064]

Just out of

curiosity, but do the seizures happen to come at THAT time of the month? If so, THAT is called CATAMENIAL epilepsy, and is hormone related. Get to a neurologist ASAP. Start tracking when the seizures occur....and if they DO occur AT THAT time of the month, bring it up. Even if they occur during ovulation....they're still considered catamenial seizures.

YOU are your own best advocate. Knowledge is power when it comes to E. Check out the Epilepsy 101 thread in Skilly's signature...that's a really good start. Then start checking out all the other nooks and crannies here.

And BTW, welcome to CWE if I haven't already welcomed you before........

Take care,

Meetz
:rock:

 

[josieb]

Emma, Welcome to the group. There are so many different medications that there is a very good chance that your doctor can find something to help you with the least possible side effects. Many of us have been down that road of dealing with problems caused by meds. Everyone is different. It did take a while, but my neuro was able to come up with a combination of drugs that my body can handle. The meds I'm on now have my seizures completely under control and they also help with my anxiety and depression.

Like Nana said, it's very important to try to write it all down and keep track of everything pertaining to medications, seizures, side effects, etc.

As for ways to cope, I'm sure you'll be surprised with how strong of a person you really are. I try to deal with things on a day-to-day basis, instead of worrying about what's ahead and that has helped. The other thing that I have learned is to try to be more positive and think of how things could be a lot worse. I wish you good luck!
Sincerely, Josie

 

[squirrel]

Oh wow, lots of replies! Thanks all!

Skillefer - Yes, it's tegretol I've been prescribed, but I'll ring the neurologist before I start. I wouldn't be so concerned till I tried it a while, but I live alone these days, so it's important I'm able to function at least as well as I do now, or chaos may ensue. With the many medications I've been put on previously, even the smallest doses seem to knock me out completely! :-( But hopefully, there will be one which helps, and this will be it! Might check out the alternative treatments as well.

Nana1 - don't worry, I'll be boring you all to tears with incessant questions!

Crazy Monkey - it's good you're feeling a bit more more comfortable about telling people. I have been judged a lot too. When my seizures first started happening my family reacted very negatively, so I learnt to try and keep it from people as much as possible - luckily I usually get an aura and sometimes I can dazedly waddle to safe-cover. But like you I want to be able to not have to worry about telling people. Hopefully people will become more aware of it, so it will be less of an issue and less misunderstood. Ooh the hot drink thing - yes! I've been caught out after making a lovely hot cup of tea a few times. But I've always managed to avoid crushing the accompanying biscuits. Skill!

Meetz1064 - it increases in frequency during those times, but the rest of the time I get about 2/3 a week - sometimes more if i get back-to back ones - god, i hate that! I tried going on the contraceptive pill a while back, it seemed to make them worse... But I know other things like sleep and weird lighting, stress, seem to affect it too. You're right- I'm gonna have to learn as much as I can to get in control.

Does anyone have any tips for recording seizures btw? I find it really hard because I get so confused before and for quite a while afterwards - my head is all over the place! Also my memory is shockingly bad (generally too), so after I stop being confused I'm not able to recall much at all.

Josieb -I'm such a worrier! But I'm learning to be more positive and chilled about it. It's at least good that I don't have to worry about any other causes for the seizures anymore. I've only seen the neurologist once, but I feel reassured since finally someone knows what's going on...
Controlled seizures, help with anxiety and depression... sounds almost blissful! Lol.

Thank you all for the warm welcome!

 

[Stacy]

hello Emma!

Welcome to CWE! I have some GREAT advice for you. As far as logging your seizures, get a lab notebook (the kind you used in high school science) and make a list. You can also do an EXCEL spreadsheet, but I like the notebook approach, as any computer worksheet can be modified easily.

Write down (example):

DATE; TIME: ACTIVITY: Feeling

11/25/08, 6AM Wake up w/ alarm, & take neurotransmitters No worries.
6:30AM Exercise Yoga, jump rope, worn out
8AM Breakfast.... 2 eggs, muffin, butter, tea
Took Meds. (have list and schedule elsewhere)
9AM Nausea
10AM About to fall asleep


You get the idea....

I must say, it's a pain in the butt, but stick with it for about two or three months. You'll be amazed at where your seizures are and that they come after eating certain foods.

Also, I read on a birth control package that the birth control pills actually affect the medicine during the hormone spike at that time. Many meds (mine included) are shot down when my hormones plummet once a month. The doctors say... Oh... Her Dilantin levels are down, just put her on more! (Morons)

Also, a great book to read that actually covers this is called, "The Venus Week, By Rebecca Booth, MD." It was VERY helpful in making me understand what in the world is going on with me. I've hit Perimenopause... just early. People laugh at me when I tell them this, but I'm pretty convinced. Since I've made some corrections, I'm doing much better.

To see what corrections you need to make, keep a record... and massive doses of vitamins... look it up. For me, i take all kinds of over the counter health stuff, and would drink cat piss if it would make these things go away. (although I must admit, I'd grimace)

 

[Bernard]

Hi Emma, welcome to the forum. :hello:

You can keep a seizure diary as suggested or just jot symbols down on a calendar to respresent the seizures. Sometimes that visual approach can help you see patterns more clearly.

 

[drarvindr]

Hi Emma , welcome :hello:
The history of MH problems co existing with epilepsy is not rare as people seem to think , and if the docs ignore your seizure history , they are MORONS. I'm not sure what you mean by "so called MH problems" . Do you have any symptoms aside from the seizures? It is also possible that some anti seizure medication can cause depression and even suicidal ideation . I'm not sure about tegretol but it's a caveat that goes along wth most anti seizure drugs. Can you describe your seizures ? In temporal lobe epilepsy , depression and depersonalisation ( you feel wird , like you're having an out of body experience) is quite common. I think a neuro consult is in order. Have you had an EEG or MRI?

 

[Bee91]

Hi Squirrel!
I'm Brandi. Your case sounds a bit like mine. It took doctors one and a half years to diagnose me with Epilepsy. But I can't imagine 8 years! I wasn't on any meds that entire time because the doctors thought I was faking the seizures and I needed psychiatric help-not medication. My seizures were strange looking, so I think that is why the docs were thinking it was a psychiatric issue. But in the time I was trying to get a diagnosis, I was not medicated at all, and my seizures got worse and worse. To top it off, every psychiatrist and psychologist I went to said it wasn't a psychological problem, it was epilepsy(back at square one). So we went to one more doctor, and after a while I was finally diagnosed with Left Temporal Lobe Epilepsy. Now, I'm on 2 anti-seizure meds and pretty much back to normal.

 

[BuckeyeFan]

:cheers:

Welcome Squirrel - unfortunately, far too many people have had situations similar to yours for many different reasons. Bottom line is that it usually comes down to 2 things. 1) caring/quality doctors 2) being advocates for ourselves or our children

The problem with both of these used to be the lack of information available to the general public. Now with the internet, we can learn so much more.

I hope we continue to be a new home for you.

:cheers:

 

[squirrel]

Hi Emma , welcome :hello:
The history of MH problems co existing with epilepsy is not rare as people seem to think , and if the docs ignore your seizure history , they are MORONS. I'm not sure what you mean by "so called MH problems" . Do you have any symptoms aside from the seizures? It is also possible that some anti seizure medication can cause depression and even suicidal ideation . I'm not sure about tegretol but it's a caveat that goes along wth most anti seizure drugs. Can you describe your seizures ? In temporal lobe epilepsy , depression and depersonalisation ( you feel wird , like you're having an out of body experience) is quite common. I think a neuro consult is in order. Have you had an EEG or MRI?

I have had an EEG and MRI, but there were no indications of abnormal brain activity. An ECG showed up an abnormality but was later discarded. I'm due for another EEG in the future. The neurologist wasn't going to arrange that until I'd mentioned the seizures are worsening.

It started with a shaking of my left arm or legs. This was after I'd started taking SSRIs at 12 years old. I did mention it at the time, but the doctors even upped the dosage! Since then I'd been almost constantly on anti-depressants, anti-psychotics or mood stabilizers. I had extreme reactions to all of them and I am almost certain they did more harm than good. I don't think I should have been put on anything - I had gone through traumatic experiences and really just needed talk therapy. Unfortunately it isn't readily available on the NHS here and so I was just passed around between doctors and labelled with the following: depression, chronic depression, bipolar 2, anxiety, agoraphobia, emotionally unstable personality, psychosis and psychotic depression. Which did a lot for my self-esteem I can tell ya! I think being labeled as mentally ill and having to live with stigma probably a problem that wasn't previously there, if that makes sense. Since I took myself off all medication about a year ago and stopped visiting psychiatrists, seemingly ironically, I am much better mentally. So I am quite nervous about taking anything. Especially as I had two suicide attempts in the past, and now live alone. I don't want to undo all the work I've done if there's a chance I could become unbalanced again. I just feel really distrustful of doctors now, and perhaps wrongly I suppose, there must be some very good doctors out there. But my life up till recently had been in tatters because of never receiving any proper help, whilst being told I was ill in all these different ways which really eroded my any positive feelings I had about myself.

Nowadays I get very bad dissociation (which is perhaps more debilitating than the seizures themselves) and I get mood shifts still, BUT this seems to occur before a seizure (i get really irritable, or euphoric or experience a huge feeling of dread), with the dissociation to follow after. Occasionally I hallucinate (visual or olfactory) as part of an aura. And sometimes get a deja vu or the opposite thing where things seem unfamiliar.Oh and I get a thing where walls "feel" closer than they are and things seem bigger or smaller.

In the seizure my eyes are rolling about, I make weird mouth-movements - licking and chewing my lips, my body convulses or my limbs shake wildly, my jaw will tremble really violently and I bite my tongue. I'm not fully conscious (takes me a while to come round). Sometimes I rub my hands on my right hip - like an automatism i think it's called? And occasionally will wander about hallucinating and disorientated, my thinking can be very strange during those times. Sometimes I get a pain inside my head parallel with the top of my left ear beforehand. Ooh and my pupils dilate. Or one of them does, and then they are both different sizes. One time recently the muscles on one side of my face weren't working afterwards too. That freaked my partner out! That's all I can think of at the moment to describe it.

Oh dear, that's quite a long post, sorry. It seems like a lot to explain though!

 

[squirrel]

Thanks Stacy, I will do that. I suppose I knew I needed to keep a diary, but it's useful to know what bits of information people actually record I didn't really know where to start. And bernard yes, I'm quite a visual person and prone to ramble on a bit too much, so little symbols would definitely help save time too!

Hi Brandi - it can't be nice having people think you are faking seizures, and it sounds like you've had a fair journey to get sorted. Very glad things are better for you now It's quite encouraging.

And yes buckeyefan it's good all this information is available. And there's a lot to be said for nagging the medical community till you find a caring doctor who knows what they are on about! Also i just have to mention - that is an impressively HUGE pumpkin!

 

[drarvindr]

Dear squirrel ,
I have looked over your history and feel that the SSRIs you were put on increased the risk of your developing seizures. All SSRIs are potentially epileptogenic and your symptoms say as much. The seizures you describe look like complex partials and sometimes , you get a semi paralysis for a while after seizures that disappears within a day. this is called Todd's palsy. a clean EEG is no indication of absence of disease. Try to find situations that trigger your seizures ( say flashing lights, sleep deprivation or some smells , sounds etc.) then they can try to mimic those conditions
while taking your EEg and capture a seizure .
I think , given your history of suicide a ttempts , the neuro needs to consult with a psychiatrist before giving you anti seizure medication to check if the risk of depression and suicidal ideation is worth the risk of further seizure activity. I really hope you get well soon