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Posted 5/26/2008 8:26 PM (GMT 0)
Well Guys I'm here cause I'm lost and have have had 3 seisures this week.

I had the first Seisure, we have figured out in August of 2007 which was labeled as a TIA and just a few months ago I went to my priamay complaining of weird sinsations in my head he put me on 50mgs of topamax. The side effects drove me crazy, not being able to spell, brain vibrations, not feelin well, thirsty all the time, brain slower than normal, just washed out all the time. So I stopped taking it. Had I known I was having seizures I would have not stopped taking it. My fault no one else is to blame.

Well after 3 weeks of not taking it I had what I now , after doing some research online, believe to be a Jacksonian seizure. Had an EEG a few days later after my second one showed no seizure activity. Now I have had my 3rd one today this has been in a total of a 7 day span.  back on the Topamax for 5 of them at 50 mg a day.

I'm hear to listen, cause I'm lost, don't know what to ask my neruologist, who misdiagnosed me the first time.

I had an MRI in AUG but not since, did not have any seizures as a kid. Oh and my Dear wife wants answers.

I have a follow up with the neruologist on Wedsday.

 I will be happy to descibe the seizure if someone want me to.

i belong to a support group simular to this for stopping smoking and  cherish the support i recieve and give there.

Posted 5/26/2008 10:12 PM (GMT 0)

Hi there Troy and Welcome to HealingWell,

I have done a little research of my own before writing this as I have to confess... I had never heard of the term Jacksonian Seizure before. I am curious to know something... when your neuro diagnosed the first seizure as a TIA, where did he say the 'epicentre' was? A TIA in the posterior pre-frontal cortex would possibly cause something that would look remarkably similar to Jacksonian Epilepsy and this is possibly how things have got confused although I would have thought that a TIA should have shown up on an MRI like a bulb on a christmas tree. I know TIA's are small but not that small surely?!?!? You definately need to back to your neuro with this information. (If you live in the states, you can see someone who specialises in epilepsy... an epileptologist. However, I am from the UK so I am unsure about how to find one). If the Topamax is causing side effects, you ought to get that changed as well. There are loads of AED's out there. The more popular ones are Carbamazepine / Tegretol and Lamotrigine / Lamictal. Sodium Valporate / Epilim and Dilantin are also proven drugs but are older and have more side effects associated with them. (Although there are people on this board who have used Dilantin for 40-odd years and not had a problem so the older meds can be the best). Any further information you can give us about your seizures may help us to better understand what is happening but your priority is to get to see a specialist.

Darren

Posted 6/3/2008 10:23 PM (GMT 0)
Just wanted to say Welcome to Healing Well
Darren has given you all great input as per usual
Just wanted to see how you are making out

LYN
Posted 6/3/2008 10:34 PM (GMT 0)

Troy,

I also wanted to welcome you to HealingWell.  You definitely need to see the neurologist again.  If you do not feel comfortable with him, by all means, get a second opinion.  Could your wife go with you to the appointment.  When I was diagnosed in 2006, my brain felt so scrambled, I always had someone go in with me to see the doctor.

Very few of us are lucky enough to find that the first medication works for them.

Please keep us posted.

Hugs!

Carla

Posted 6/4/2008 1:56 PM (GMT 0)
How are you making out Tony
Are you reading the posts .....??

Definitely have support and concern here as you can see

LYN
Posted 6/5/2008 3:05 AM (GMT 0)

So So sorry I have been away from the computer for 2 days . Thank you so much fro the replies.

The seizures , which have been diagnosed as complex partial seizures, they start out with an eye twitch, then on to my mouth contorting it will follow down my arm and futher down where I can't walk or move my leg.  All on the right side only. My tigger is being tired sleep deprived or close in work like the computer.

I'm still having them almost daily just not as bad normally get them to stop with just the eye. They do leave me wore out.

Stopped taking the Topamax and am on Trileptal (carbamazepine) now, which is better for the side effects, I'm only up to half my final dosage. It may get better Dont know yet.

I had an MRI today and am waiting for an update maybe by Friday. I'm currently wearing a portable EEG unit for the next 20 or so hours. Hopefully will know more soon.

Thank you so much fro the replies. I do feel the support here, I have a few threads.

 

Posted 6/6/2008 1:28 PM (GMT 0)
Update-

I have had an MRI and 24 hour EEG, still awaiting the results, However I have had my wife take my blood pressure just before my Aura and before I have any seizure activity and it is 150/100.

Has me thinking that something else may be going on.

Can hypertension show as a seizure? Would it look simular? 

We are keeping an eye on it, buying an automatic blood pressure cuff and taking any time I feel it may be elevated.

Thank you again for your replies.

 

Posted 6/6/2008 11:12 PM (GMT 0)

Troy,

I am sorry, but I do not know the answer to your question.  That is something Darren may be able to help you with when he gets back.  He is really a wealth of knowledge when it comes to epilepsy.  Sometimes we have to let him take a break.  :-)    I know I will be very happy to see him return.

Take care!

Carla

Posted 6/9/2008 9:32 AM (GMT 0)

Hiya Troy,

Im not a medical expert but I wouldnt think that Hypertension would show up on an MRI or EEG. Normally you would use an ECG (I think they are called EKG in the US) for detecting cardiac conditions. Hypertenstion could cause seizures though and 150/100 is quite high as I remember. Try changing your diet and gentle exercise to reduce your BP. I hope the results come back with something concrete.

Darren

Posted 7/5/2008 11:15 AM (GMT 0)
Hi Troy,

I don't have a lot of helpful information to offer you just support. I too have simple partial seizures that seem to be out of control again for the moment. I hope you find speedy answers to all of your questions. I am afraid I can not offer you a great deal right now but support. Monte
Posted 7/24/2008 7:11 PM (GMT 0)
I have similar experiences with my seizures, which I have apparently had most of my life(exacerbations w/ remissions) but have gone undiagnosed. They have been forefront since having had a 45 minute tonic/ clonic seizure that led to discovery of a very large meningioma (brain tumor) 3.5 years ago with subsequent craniotomy and tumor resection that left me partially paralyzed. I had 3 years of 'silence' and have been having virtually constant seizures x6 months that are pretty much identical to the seizures that you describe.

_________

Editing this post: My Primary and I are having a difference of opinion on this: He feels that I am not actually having "full blown seizures" or at least is hesitant to label them as such, rather he feels that, after a lot of work-up this week, I have been having multiple auras and has adjusted my meds and placed me back on several that were discontinued prior.  Symptoms have since stopped, so I'm happy, somewhat.... scool

_________
I have noted that I become very hypertensive prior to or during my seizures, although I think that it is more due to anxiety from the seizures rather than the etiology OF the seizures.

Regards,

Post Edited (Horsewhisper) : 7/26/2008 11:15:51 (GMT-6)

Posted 7/25/2008 3:54 AM (GMT 0)

HW,

Thank you so much for your reply. I'm headed for a 5 day Video EEG study in 2 weeks.

I've had the Cat scan and MRI which both came back as normal, I am taking Trileptal @ 900 mg's daily and hypertension Diovan which so far has my seizures and high blood pressure under control. 

You bring up a good point, that I wonder which comes first?

I'm sorry that you have had to struggle with this, wishing you healing and positive vibes.

Posted 9/5/2008 5:55 PM (GMT 0)
Troy4Ford - Have you heard of Dystonia? Look this up on the computer and take it to you doctor. When I was told I had this disorder it answered my prayers and know I can cope with it. I have generalized dystonia and it is pain fill but my family can help me and understand what is happing and the ambulance doesn't get called every time. Take care hugalot
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