Zilly74- I had my AVM surgery 2 months ago and have been on sezure meds since then.
Prior to my AVM rupture I never had any medical issues, I am/was 31, 4 months pregnant, very independant and thought I had the rest of my life to LIVE !!!!
Though I know what you experienced was traumatic - the most important thing is you are ALIVE and still here - to LIVE ! ... Live each day to the fullest, Thank & trust GOD and you will be just fine.
My experience has allowed me to see life in a new light - because prior to I was always stressed, worrying, and trying to control everyhing ... only for me to realize I have no control. I will pray for you but I just wanted to encourage you to focus on the positive and accept the things that you can not change. Thank you for sharing & I wish you the best. TRULLY
I'm sorry, I should be thinking more positivly. I'm really sorry for bringing everyone down. I'm just not happy with the quality of my life right now - from what it was only 5 months ago to now. And it's something I am working on and will work past. I am sorry everyone :) I have to fight for my faith in the Lord and keep living for my children and my husband and myself. I should be thankful to be alive and stop dwelling. Thanks everyone.
You don’t need to apologize. You have every right to feel how you feel. We are here for you. It’s natural to have these feelings. I was angry and I questioned by belief in God but in time I found my way to believing again.
I must agree with Wendy, no need to apologize. I had *many* mixed emotions/and still do. However my faith in GOD is trully what keeps me on the right track (sane). LOL I had to realize everyhing happens for a reason - even those things we do not understand.
Bu as Wendy T said below- "it's natural for you to question, doubt, and even be angry & frustrated" - I say Just don't stay there that's all.
Well, it has been exactly 2 weeks since my grand mal and I am still not myself. I am experiencing severe tinnitus. I have some numbness in my face. I am slower mentally, multi-tasking, the computer, my comprehension, ability to concentrate and focus has become frustrating to me to the point where I have cut my hours at work in half. I have a dull ache where my avm resides and I always have a headache now. I also have what I call spasms throughout my head that come and go, and just linger. I have extreme sensitivity to light and sound and motion. Reading aloud is something I will no longer do in public for a while because the last time I had read a short article aloud to my boyfriend I sounded as if I should have been in the 2nd grade. And I also found that kitchen knives and I no longer work well together anymore. So many things have changed since my surgery. However, I'm hanging in there! I bought a new bike, it's the one I have wanted all season, I just had to wait for it to come in my size, I had my sales rep ship it immediately. We're just going to wait until my doctor's say it is ok to increase my exercise routine again and we're going to build her up and get her ready to ride. She has that Richard Petty Blue.... I can't wait to ride her! http://www.marinbikes.com/2012/bike_specs.php?serialnum=2077&Bridgeway_Triple_Step-Thru
Anyway, I wanted to ask for those who had seizures...how long did your effects last? I'm still seeing trails at times. I still get strobe lights if I get my blood pumping. I am still getting blurred vision, black blips, white blips, sometimes my head feels like an egg getting ready to crack right open, sometimes I feel real foggy. I've had all my follow-ups aside for my visual field which I go for next week. We knew my optic nerves had some swelling. I'm just worried, I feel like my head is on fire half the time. I catch myself in blank stares alot, I worry if that is a seizure, lol, or I'm just still tired from the seizure. Ugh....
I have a good friend on Topamax…nothing to do with an AVM. At first she had a very hard time concentrating on anything. I just found this link…http://www.topamax.com/how-topamax-may-help–what-to-expect.html
Evidently you are not the only one experiencing tingling sensations. If gets worse…you may want to notify your doctor
Yes, these are not new, I've been on topomax for 4 months now. The tingling just increased. It's the other drawbacks I'm worried about from the seizure and when I tell my neuros about it, they say, "Yes, we hear these things from our other patients too...eventually it should go away, we cannot tell you when." And then you leave the office with more questions than answers. It's like they don't even know enough about these procedures or seizures to tell you what to expect and when to expect the after-effects to stop. Its over 2 weeks later and I still feel like I'm sitting on a mild jack-hammer, I'm still slower mentally, I'm still blipping strobe lights and still easily fatigued, still getting the spasms throughout my head. And no one can tell me why. I go for my visual field tomorrow, that is my last appointment from these follow-ups until July. So, we'll see what happens.
4 hours with ophthalmology...my eyes are fine, optic nerves are fine. All of the crazy black blips, white strobe lights, temporary bouts of blindness, eye-graines...eye doctor says it's all from the avm, not the seizure, not from swelling of the optic nerves... SO I'm left with my follow-up in July with my epilepsy doctor. hmmph. And she didn't have many answers for me the first time around other than upping my dosage of topomax. I don't think anyone knows anything anymore. I feel like I'm being bounced around like a ping-pong ball.
Ask for Phenobarbital first anti-seizure medication
Ever made. No longer has a patent on it, not commonly
Prescribed because the Drug Companies don’t
make the big bucks from it. I have been taking it
for years and it works well for me. I experienced
to many side effects from the other drugs. It is
also very inexpensive. If it was invented today they
would call it a miracle drug.
I experienced many different typed of seizures,
Grand Mal, Petite Mal, Complex Partsal .
I have not had a seizure for 7 years “knock on wood”.
Since taking Phenobarbital. I started having seizures
One year after my AVM surgery back in 2000.
The surgery caused scar tissue to form which is
what caused the seizures.
I also was not told, think this is common " they really
don’t know" some never get them some do.
Seizures are not pleasant , your whole body
goes into muscle spasms even your throat.
Can’t breathe feel like you are going to die, horrible
feeling. Hope you get yours under control.
I all with’s had mine at night, lucky me had company
who called ambulance. Common not to remember ,
Complex partial seizures are very strange they
Can last a week , mine did. Very different from other
Seizures, you feel like you are caught in a moment
events keep repeating. Like the movie Ground Hog
Day, very strange indeed.Sometimes it helps to
have a scent of humor. Like " Are you repeating
Yourself or am I just hearing you repeating yourself.
It can be quit bizarre, and people around you,
Know that something isn’t quite right. It is natural
to get upset or annoyed when reality doesn’t make
any sence.
I'm sorry you had to experience that, having a siezure can be devastating. I hope they get your med situation straight. It's hard to go on with your normal life cause, honestly, what is your normal life now? Keep yor head up!
I was slow for about a month after my grand mal and it took several months for my head to calm down but I believe that was due to the medication. I found it so hard to sleep without my head feeling live. I haven’t had GKS yet as I keep changing my mind as to whether I want it or not. I am fine apart from now being epileptic. I also found focusing particularly at work very hard which upset me a lot because I had never found my job hard. I too had headaches, felt like I had a hangover all day - again side effect of the meds. After juggling with them a bit I now take the higher dose in the evening so I can sleep off any side effects. Hope this helps you.
Thank you Linda for responding. You have helped alot. I never found my job hard at all, in fact, the hardest part was long hours behind the computer screen, I can do my job in my sleep. Now it's just everything about my job is hard. But I'm sure that is from the seizure and learning to come back from it. I'm much stronger physically now. But mentally, I'm coming back, but I'm not the same person for sure. But I know what you mean about your head feeling "live". Because mine is. Thanks so much for sharing :) I appreciate it.