Very scared after having two seizures

Support
1

Hello,

i am hoping someone will be able to help me / advise me.

I received radiotherapy for an AVM on my left temporal lobe, my neurosurgeon has said that is was 'small' so i underwent treatment via a 'cage' fitted to my skull to deliver the radiotherapy.

Since the treatment 2 months ago, I have suffered two Grand mal seizures, the first one I badly injured my self as i collapsed on concrete.

Can anyone tell me if this is just a temporary 'blip' whilst my brain is getting over the radiotherapy, and should i expect many more...

I am not taking any anti conversant medication however after my second seizure i am wondering if I should now consider the medication.

I am terribly worried..... and any advise would be very very much appreciated..

Also, since the radiotherapy, i have a small bald patch on the top of my head.. will this hair grow back? ....... it's not started to re grow as yet.

Many thanks

Helen
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2

Being scared is a very normal reaction.

If you've had two seizures, it sounds like you should be on anti-S medication. Your neurologist should be able to guide you in that. Generally, they start with the oldest, most well known med, then if it doesn't work, start going up the line with other meds.

Best wishes,
Ron, KS

3

I am surpised that your neurologist has not put you on one after the second seizure. There are many different types of anti-seizure meds out there. It is not like the old days where all you had was phenobarbital. Please keep us informed!

4

Hi Helen...my strong advice is to speak with your doctor and ask about medication for the seizures...God bless and keep us posted

5

Helen,

I've had 2 Gamma Knife treatments for my unruptured AVM (right parietal lobe), and have had a craniotomy to clip 2 aneursyms & have not had any seizures. And I still have another Gamma Knife treatment to go.

If I were you, I would contact my neurosurgeon and/or neurologist right away to express my concerns. I had a change in migraine symptoms & locations a about 3 months afer my first GK & 2 months after my crani & my surgeon had me go in for a MRI right away. Luckily, everything was ok & he had me see a neurologist to deal with the migraines.

As far as avoiding seizures, he told me to not get falling down drunk & to not become sleep deprived. (lack of sleep is one of my migraine triggers, too & the neurologist is helping with that.)

As far as a bald spot--I developed one a few months after GK & crani. My hairdresser suggested taking a supplement with biotin--I found one called Hair, Skin, and Nails. I don't remember to take it often, but my hair does seem to be growing back. I didn't notice any hair loss after my 2nd GK treatment in December.

6

Helen, My AVM was also on my left temporal lobe and I have to take anti-seizure meds. They told me that if it healed in 2 years, I could go off the med, so I cut back on the meds and had a grand mal, so now I know I will have to take it for the rest of my life. I'm on Keppra and it works for me. I was allergic to Dilantin.

I had Proton Beam Radiation and didn't lose any hear.

Wish you the best and keep in touch!

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Hello Helen, I am a patient at the Walton Neuro Centre and I was diagnosed in May 2012 with a Brain AVM after suffering a seizure whilst at work, Ive been fit and well all my life. My one and only seizure was 8 months ago and so far have had no further symptoms and I count my blessings. Mr Eldridge performed a Brain Angiogram on me in the diagnosis stage. After several appointments to discuss with the Neurology Team its been agreed to perform the Stereotactic Radiosurgery as the least intrusive, this was agreed back in October 2012 and that they will contact with an appointment, I am still waiting. Ive allways done a lot of exercise with Road running and Gym work outs etc , and my doctor advised this was okay but everything in moderation. I read your profile and it would appear that you have already had the treatment at the centre, I would be grateful for your thoughts and experiences in this area.

8

Hello Sweetheart!

When I read your email it was almost like reading my own story.....
Firsty I will be open, honest and blunt and tell you exactly what happens and my own story.

Like you I am a VERY active person, MMA, running, triathlons, spinning and weight training...Like you I was fit, well and athletic and led a very healthily life.

Then in Sept 2010 my world imploded, My AVM was found when I had a seizure whilst training in Sep 2010, I had never had a seizure before this was my first one.

Mr Eldridge performed a Brain Angiogram, which determined that I had a Left Temporal Lobe AVM, he asked if I would take part in a clinical trail called the ‘ARUBA’ trail, but stressed that he would take away the ‘lottery’ of which treatment I would be given as he strongly felt that Stereotactic Radio surgery was the best option for me.

I had my Stereotactic Radio surgery via a cage drilled into my head in April 2011, it was hideous, BUT you have to understand that it will hopefully eventually obliterate the AVM over the next 2-3 yrs.

Since the Stereotactic Radio surgery, I have had 5 more seizures, one 3 weeks after my Stereotactic Radio surgery which was a ‘Grand Mal’ which landed me in Walton for 12 days.

I cannot say either way if the seizures would still of happened with or without Stereotactic Radio surgery, all I do now is that since the Stereotactic Radio surgery I have had many more.

Now.... here’s the kicker.... ALL my seizures have happened either during or right after exercise...... which gives me almost a definite diagnoses that it’s Pressure of blood to the AVM causing the seizures, I have reduced my intensity and now wear a heart monitor to keep an eye on how hard my body is working... trying to maintain between 130 & 150bpm.

I am absolutely frightened to death of having a stroke or haemorrhage, but where do you draw the line , cave in and sit at home doing nothing and let this beast screw up your life ??

Last November I gave in, and took Mr Endovalsan (Epileptic consultant) advise and started the ‘’Anti Convulsant’’ medication called ‘Lamotrogine’, I am on 150mg a day which is a low daose and have only had one ‘blip’ since starting them, again directly after a spinning class.

I honestly cant say for sure whether the Stereotactic Radio surgery has helped me, but LONG TERM it will eradicate the AVM .. No AVM = No Seizures.....

The worst thing is loss of driving licence, you have to go seizure free for 1yr before you can get it back, I left mine to the absolute last resort before informing the DVLA.... but I had to do it.

Please do not hesitate to contact me at all – 07940 511056

Kind Regards
Helen

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Hi Helen,

Great Story and thank you for sharing it.

I hope that your prognosis is correct and that after your AVM is gone, your seizures will also be gone. I would caution you though that that is not always the case.

In my wife's case, the AVM has been obliterated, but she still has abnormal electrical activity in her brain, and if she stopped the anti-seizure meds, she would certainly have seizres. She has had 'breakthru' seizures recently, where a seizure starts, but the anti-s meds prevent it from becoming a full blown seizure.

There are more than a few people here also that have had their AVMs removed, and still suffer seizures.

I hope that is not the case for you, and I do wish you well.

Best wishes,
Ron, KS

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Hi Helen thanks for responding to my message and the information you supplied was very helpful to me.
I was offered to join the ARUBA trial but declined it preferring to put my faith in my neuro team.
Not being able to drive took some time to readjust to and having to ask people to drop you off all the time starts to wear thin to all parties. Thank god for public transport.
My one and only seizure was on the 15th May 2012 and as you know you life starts to change from its diagnosis. I must have read every article about Brain AVMs and I know they are very rare and form during pregnancy and they dont know what causes them.
My last appointment at Walton was on the 25th October 2012 with Dr Husband and he explained the Stereotactic Radiosurgery procedure and the lovely skull cage and I signed the consent form , but as of yet I have not received an appointment date.
I sometimes think I will just leave it alone and take my chances , but everybody says you cant do that as it will get you down the line.
Most people including myself have never heard of a AVM before diagnosis but like yourself use this website to gain as much information from people that have been brought together through some form of fateful process.
Like you the thought of a stroke and brain bleeds frights me to death but this is the hand that we have been given and we must play it as it comes.
Thanks again for getting back to me its a real help.
Best Wishes
Dave