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AVM Survivors Network

Scared of seizures


#1

Hallo everyone. I am new here and am still learning about my condition. I have what is called a posterior frontal AVM which was diagnosed 8 months ago (I am 49) after I had a seizure which was the scariest and most painful thing I have ever experienced. I am still learning about AVMs and am having trouble understanding why at my age it has just surfaced - I lived a normal life until this happened.

I am so sorry to read some of you have much worse problems than I - and even bleeds, which is the worst thing that can happen. That makes me a little bit guilty about writing this because it seems so less bad than some of you are going through.

They started me on Keppra and after two tries at this I gave up on it as it was making me suicidal. I lived on without medication until I had my 3rd seizure. In hindsight all of these seizures occured after a few beers and all happened within about 48 hours of my nights out. I have not touched alcohol since I made that connection, I can tell you!

So far all the seizures have started with a jerking left leg and after about 30 seconds my entire left side seizes up causing me to scream in pain - it is almost a different state of conscienceness between the pain, the fear and loss of any control. I don’t know if I pass out or not. It is short-lived and I come round usually with cramps in my left leg and arm.

This has made me paranoid about having another seizure in a public place or at work. I am always thinking about my left leg now and any strange feelings in my leg start to make me extremely anxious to the point where I am afraid to leave the house. I still go to work (a colleague takes me) but sometimnes the fear takes over there - my anxiety was so bad once that they just took me home. No seizure happened that day. Keeping warm and lying down makes the anxiety and “strange feeling” slowly go away.

After that I wanted medication and am now on Lamotrigine (only 50 mg, steadily building up each two weeks by 25mg). I have had no seizures since (about a month now).

I am waiting on the treatment which looks like it may be radiotherapy. Surgery is ruled out because of the location of my AVM next to nerves.

Because the seizures are so dramatic (I haven’t even thought about bleeds or other consequences) I would like to know if other members have simialr fears to me. The meds make me twitchy and wobbly which doesn’t make me feel like they could prevent any seizure but so far so good.

In my case I just try to eat fruit and veg as much as I can and live healthily but I have good days and bad (fear-wise). I have been reading about lamotrigine here and think it is probably the way to go.

I have so many questions but the ones burning the most are:

  1. is diet important?

  2. Is exercise ok? Like jogging, cycling?

  3. Does anyone have a similar situation to me and if so, how do you cope?

Feeling tired makes me feel worse and the lamotrigine makes me sleepless at times, desparately tired at other times. My neurosurgeon says that I should avoid “that jetlagged feeling” if possible and rest well.

Like I said, I know others have worse things than I do and my heart goes out to them. If I am asking old questions, ones asked many times, then forgive me.

Thanks

Chris

Chris


#2

Can you describe what you experience when having a seizure. I do not know if what I have would be similar, for me diet seems to matter little being tired or stressed or experiencing a stiff neck or shoulder can precipitate what my drs do not refer to as a seizure. I have a mini blackout then severe vertigo for anything up to 2 days.

They have tried many medications and I became a guinea pig, I became so sick of the process I stopped all drugs and now simply rely on stemetil to lessen the attacks.

Marsha


#3

Thanks for your reply, Marsha.

Well, I have had three. Each one started with my left leg jerking upwards at the thigh. It happens once a second or so. When that occurs I can feel fine preceding it.

What happens then is a bit difficult to explain. Have you seen that film The Matrix when Neo is being engulfed by a silvery substance? It feels like a rapid spreading of something else taking over my body on the left hand side. It hurts a lot! People around me say my limbs are quivering. As it engulfs me I have strange sensations (like hallucinations almost) - it felt last time like my hand was smashed up and wet with blood. I can't look and see what is happening because I can't move my head. I concentrate so much on the pain that I don't really know what else happens. I don't know if I pass out or not but somehow it passes. After that the muscles at the top of my leg feel like it could all start again at any second, like one twitch could set it off. Up til now, it has stayed with one seizure per time.

Each time I have had my blood pressure measured afterwards and it is always high (150 over 95 or thereabouts). Normally my blood pressure is about 135 over 75.

Since the last one my leg always feels like it might start again.

So, are yours painful? The vertigo sounds scary. Do you have any warning like I do?

Chris


#4

hi chrisf, I have never had a seizure so im afraid I cant comment on that. my avm is posterior fossa ( basically at the back of my brain) but I have been told it is hopefully in a position not to cause seizures, which is one good piece of news I suppose. I am 41 and my avm started to press on other nerves in my brain in august and its because of this secondary condition that they did an mri scan and found the avm. like you I dont understand why it has suddenly showing symptoms now after all these years but I suspect it is growing, its currently 3.7cm which is quite big and inoperable so like you I am being put forward for radiosurgery and currently waiting to hear from them. fear and the unknown is a major factor for all of us but please ask questions because unfortunately the medical system doesn’t seem to help with passing on a lot of
information (in my experience anyway). I was told to avoid alcohol but you should
continue with your life as much as you can, I have read contact sport may be something too avoid, go onto decaff tea/coffee etc if you can


#5

Hi Williamsmummy4,

Thank you. Sounds like you are playing the waiting game too with the radiography. Hope it works out for you. I am very glad you do not have seizures.

I am convinced alcohol plays a part. I have read it dows have some far-reaching effects, even in small doses - and vitally - can disrupt sleep. I hadn't slept well on all 3 occasions I had my seizures.

I agree with you about the lack of information, but I am gathering more ach day on this site and others.

Excercise should help reduce blood pressure, so, although I was quite active before I will have to build it up slowly as I haven't done much for months now. Will just start walking an hour a day or something. Yes, steer clear of contact sports like rugby, heading footballs etc. I am a bit too old to be doing that stuff now anyway!

I still like my coffee in the mornings but I have moved to herbal tea during the rest of the day, mainly to help me sleep properly at night.

Best of luck with the treatment. It seems to be an effective one but can take up to 2 years to actually get your AVM resolved (I have been told).

Regards

Chris


#6

Welcome and dont ever think your issue is no more important than anyone else on this site as we ALL deal with AVM's even after removal...I would suggest you speak with a Doctor to get more information and definately stay away from alcohol as it is known to be a problem.

Keep us posted and i believe any excercise is fine as far as it is in moderation, which I would still consult my neuro about...a good diet should be beneficial regardless of our circumstances in life...stay positive, I know its hard as I was living a normal life until I was 31 and found out about my AVM and had a bleed 1 month later...God bless!


#7

Yes. Seizures are very scary. Do not feel guilty! It has almost been 6 months since my last seizure. They have pretty much all been grand mal and little episodes where I get weak on my right side and can't get my words out and then get all upset and crying. Had one of those spells on 10/29/14. Hope that won't keep me from driving. All seem to happen at work.


#8

Hello. I had am avm of the occipital lobe treated, and over the years have had many gran mal seizures. I always lose consciousness during the convulsions so I don’t remember that part, which is for the better. But before that it’s quite a scary feeling to be losing control.

Two things. Lack of sleep and tired is a main trigger. Also alcohol.or rather coming down from alcohol is a trigger for me. Mainly if I drank a lot about 6 hours later when it wears off im at high risk.

Some ppl are ok with Keppra. I wasn’t. When I tried it I was really agitated and angry. Had to move on to a different med.

It sucks what you’re going through . Don’t feel guilty about being unhappy about it! Good luck.


#9

Hi and thanks for replying.

I do not have a neurologist assigned to me, so it is difficult. I get referred to specialist departments at different hospitals. It means I don't get a personalised treatment and so far this is the only place I have talked about this.


#10

Hi Josh,

Thanks. I looked up gran mal seizure and it sounds like the ones I have had. I am conscious during some of it though. Seems like forever when it is hurting so much. Consider it a blessing you pass out!

This really helped. The two triggers: sleep and alcohol. I drank heavily years ago when I suffered some big family losses and I understand what you mean. Think I was bordering alcoholic and I wonder if that caused some damage - probably did. Anyway, I have cut that out altogether now.

I have a bit of trouble sleeping with the meds but so far so good on the doses I have been having so far. No seizures for 5 weeks now. The meds make me twitch though and I have to get used to this because it is the twitching which has started it all in the first place. I have started to meditate too - I have an active mind which needs to calm down. I tend to panic a bit too. So, all in all I am doing OK for now.

Did you get your AVM sorted out in the end? How is it going post-treatment?


#11

Thank you all for your encouragement and information. I am not doing too badly so far and have not had a seizure now in 5 weeks. It really does help to tell someone who understands (I live alone) and it is much appreciated!


#12

Yes. Now after the seizures I have about a day long recovery period where I’m worthless…lol. oh and about half the time or more I bite the crap outta the tounge. But the avm is considered obliterated. Problem is the radiation used has damaged that area. So it left me with similar symptoms …

I think the hardest part about having epilepsy really is finding the right meds . It can take time. And you have to really be able to notice if the med is giving you side effects. .I swear what you can get used to is amazing. Then next thing you’re not enjoying life and not totally sure why.

The not sleeping part is kinda odd…

So have you had any treatment yet? As far as the avm itself?
*** edit** I see in your original post you have not had treatment but waiting on that.


#13

Hi Josh,

That's right, still waiting. The doctors are still looking at the best treatment but from what you have said radiotherapy could cause more damage than I have now.

Don't your meds control the seizures well then? It sounds like you still have them regularly - and nasty ones at that. I feel for you.


#14

I won't be much help, so I just want to say that I'm glad you're on here. I hope this forum helps you as much as it's helped me. I never had a seizure but was still on Keppra. At first, before the surgery, I would tell my husband crazy things like he didn't care that this was happening to me and to just drop me off at the hospital on the day of the surgery. Finally, after a few weeks I leveled out. My brother in law went crazy while on it as did someone else I know. Please keep us informed on your recovery and if anything else arises.


#15

My AVM was removed almost 4 years ago. I've had 3 or 4 grand mal seizures since. Mostly
I just have the ones where you blank out for a few seconds up to a minute or two. When I seize, my entire left side seizes up (but I am hemiparetic so that is no surprise, honestly). My hubs says it looks like I'm possesed because I start to bend back (after collapsing) and I usually yell while my left side is curled up, straightening out, curling up, and so on. He said the first time I looked like I was spooked by a ghost because I kept yelling "What is that, what is that?!" while staring up into a corner of the ceiling. Apparently I knew I was having a seizure but didn't know what was going on if that makes any sense. The last time I was mostly conscious and was pretty aware what was happening. My hubs asked if I could see him and I kept telling him I couldn't, it was like seeing doubles of doubles. Very confusing.
1) Diet is very important. Eat healthy and regularly. I've learned that in all areas of my life, a routine is essential. A diet schedule, sleep schedule, a regular work schedule...anything to reduce stress to your body and keeping it on a schedule will help with that. There is a recommended diet for epileptics (although I have NEAD [non-epileptic attack disorder]). It's called a ketogenic diet; it's high fat and low carb. It tricks your body into burning fats and not carbs.
2). I exercise regularly but I am physically disabled so I have to. BUT if I up my reps I have to do it very slowly because my seizures have coincided with upping reps faster than I normally would. Coincidence? Maybe.
3) I don't think my situation is similar but I cope with meds. I take Keppra AKA my angry pills. They made me suicidal as well and incredibly angry and emotional. It took about 3 months for that to pass. I found that taking my meds on a schedule helped decrease the emotional and mental side effects. When they upped my dose I did it slowly because I didn't want to go crazy again. I try to be aware of my signs but that makes me paranoid and I often have panic attacks when I feel the sligtest bit "off." I seem to assume I'm about to seize for no apparent reason. Kind of annoying.


#16

It has now been 4 years. I have followed the advice given here, especially with regard to diet and things have mostly been good. I had my Stereotactic radio-sugery back in 2015 in Sheffield in the U.K. Today I am working, driving and walking again. I am on Lamotrigine and Phenytoin with 10 mg Clobazam, which is getting weaned off slowly. I have not been to this site for so long because it made me feel bad with all these people having problems and reminding me of my own. I promised an update - so here it is - and so far, so good. I hope to stick around and help others, where I can.


#17

Sounds like things are moving along nicely, that’s great to hear. Your presence here is appreciated and to whatever extent you’re comfortable with is perfect. Thanks and Take Care, John.


#18

Hi Chris, I had a AVM bleed (age 14, I’m 59), 2 surgeries, gran mal siezures ever since. The drug jouney has been “interesting”: dilantin, phenobarbitol (way too much, lost years of my life–gone), Kepra (bad psych/emotional experience, Tegretol and mixed cocktails, now Lamotragine. Lamotragine doesn’t stop breakthrough siezures but there don’t seem to be bad side-effects for me.
I tried for decades unsuccessfully to find a correlation between alcohol, rest, stress, diet… and my siezures. I’ve tried meditation and I’m going to try it again. There is no down-side risk. Also exercise and hiking in nature help me emotionally.
As far as my siezures, I don’t get any aura or warning because they happen when I’m sleeping. I sure do remember the pain and fear every time and the soreness/fuzziness that lasts for 1-2 days. The unpredictability and public humiliation is terrifying. I had a siezure on a flight, ended up in Mass. General Hospital, hallway of emergency room, alone with no memory/idea of how I got there. It has destroyed relationships and jobs. Unfortunately, it’s something we learn to live with.
For me the emotional/psychological scars is the toughest because literally nobody can relate. It’s often shameful/embarrassing and difficult to explain. It also affects my memory and that damages personal and work relationships.
It’s good for me just to be able to express this to you. Please feel free to write me. At least we know we’re not alone. Greg


#19

Hi Kristi, Bless your heart. We’ve both been through the same “ringer”. At times it is literally worse than a nightmare because at least nightmares end and there aren’t scars. I had a horrific experience where I broke my femur during a seizure. I’ll spare you those gruesome details.
My experience with Kepra was awful, including rage and depression. It cost me a marriage (partially) and jobs and friendships. I think that Kepra should be banned completely.
The emotional effects are difficult for me to face because of shame and embarrassment. It’s been a struggle but there is so much good in my life that I’m constantly grateful and often happy.
Greg


#20

HI Greg. Sorry to hear you have had a tough time through the years. It must have been hard for you. Soul-building stuff (to kind of put a positive note on it). Keppra should be banned. I have done meditation now for two years. You do not have to Budhhist to do it. I find the Vipassana type of meditation the best for me. It has helped me in a number if ways but it is a slow “unfolding” if you will, not a sudden cure all. Lamotrigine affected my memory badly at first but I feel OK with it now (or maybe just happy with a bad memory ;-)). Everyone has their own stories here and some, like yours, are heart-breaking to hear. You are indeed not alone. I am very fortunate. My last seizure was about 15 months ago and left me paralysed. It was caused by inflammation from my surgery. My body recovered though and, after treatment, I can walk again. This changed my life, in a good way in the end - not a day goes past without me saying a little prayer of thanks. I can relate to your situation. Same goes for you - get in touch if you want. No problem at all.