Hello all.

[Dazed]

Hello. I have been having blackouts for over seven years now. I have had an eeg but was not confirmed having epilepsy. My doctor seems a bit clueless to what is going on with me. I will explain what happens before and what happens during and after these attacks. Hopefully you can give me some advice. Thanks. My blackouts generally happen in the evening. I am conscious of a gasping for air. Well like an instant glitch and I seem to not be able to breathe. My partner says she cannot notice this panic stricken breathing problem that I explain and that I just tense up and lose consciousness. During this introduction of the blackout I feel a shaking and vibration in my body and usually my left arm starts to flop about. Then I am out. I am slightly aware of visual geometrical patterns whilst regaining consciousness. I usually awake dazed and confused. I tend to pick myself up and stumble off to recover somewhere. Although somewhat automatically. As you all know the the results of these blackouts /seizures can be very messy. I recently broke my nose and have fallen down flights of stairs. Broken ribs. Currently I have a blackout at least monthly and sometime twice a week. Recently my blackouts have involved voices. when I am having an attack alone. What do you guys and girls think? Would you say from what I describe as being partial seizures. Thanks for taking the time to read my introduction. And my heart is with those who suffer similar attacks. XXX

 

[Dazed]

Since trying to understand what is happening to me and reading this forum. Some of the information available has lead me to realize realize I am suffering from Atonic seizure. Thanks for your advice.

 

[Nakamova]

Hi Dazed, welcome to CWE!


Have you seen a neurologist to get evaluated? have you had a n EEG? That might shed light on what is happening. Do you have any clue at all as to what might be triggering your seizures? A seizure journal might help in this regard.

Best,
Nakamova

 

[survivor]

Hello dear! Its true that this site may be if real help but u definitely need to consult a neaurologist. If ur left arm flops during the seizure u might have some problem in the right part of the brain, as in my case, my right arm flops and i was diagnozed with a calcification in the left parafalcine portion of the cerebrum. Dear go to a doctor, get proper diagnosis and start the treatment as soon as possible. Dont worry things will be better after u have the proper treatment. Do take care!!

 

[Dazed]

Hi, I have seen a neurologist. We have done EEG and MRI tests. The EEG test did show a slight positive for me having some sort of problem. The MRI scan did not show anything. My neurologist has suggested I take lamotrigine. I am very wary of taking these drugs and am not sure what to do to be honest. I have been having these seizures so long now. They are a normal occurrence for me. Will these drugs give me terrible side effects? My partner has watched some videos online within the last few days and we are sure I have the Atonic seizures. with the muscles relaxing and causing me to fall and blackout. I will pass the information on to my neurologist as we were having a hard time explaining what was happening to me. Any advice and experiences of using lamotrigrine would be grateful. Should I take the meds ?

 

[Cint]

Dazed,

From what you've described in your previous postings, your seizures sound to me like Complex partial with secondary Tonic/clonic seizures, not Atonic seizures. With the Atonic seizures, the person loses muscle control and usually does not black out. They are also known as "drop attacks".

With Complex partial seizures, sometimes a person can/does hear voices as part of the "aura". I've been there, done that, also and I have CP seizures with TC seizures and have suffered black eyes, bruises, serious burns, falls......

I also tried lamotrigine and for me it didn't do the trick but, there are other meds. IMO, one should weigh the risks of seizures vs side effects of meds. Sounds to me like your seizures could eventually lead to a serious accident if left untreated.

 

[Nakamova]

I understand your reluctance to go on meds. You might consider the Modified Atkins Diet, which has shown some success in treating absences and atonic seizures. More info here: http://www.atkinsforseizures.com/

Regardless of the mode of treatment, it's important to prevent your seizures from progressing. Sometimes uncontrolled seizures can change and become more frequent or more serious. Among the AEDs, Lamotrigine (Lamictal) has a decent track record in terms of side effects. Many folks here at CWE have tried it, including myself. It works for some, but not for others. In my case, my seizures are controlled and the side effects are tolerable. You can search for threads that mention Lamictal or Lamotrigine using the "Search" tab in the top bar. The link below will get you started too:

http://www.coping-with-epilepsy.com/forums/tags/lamictal.html

 

[Rae1889]

I was on Lamictal from October 2009 til about April 2010. I ramped up slowly but i did notice some side effects. I had some insomnia at first, then that went away and in its place came really vivid dreams. Then I started to get some hair loss, which I did not like. I went from having Thick hair needing 2 elastics to hold it in a pony tail to needing the small size elastics to hold a tiny amount of hair. Then I got the dreaded rash. My face swelled to triple its normal size my lips swelled to the point where my skin was peeling and it was leaking fluid because they were so large. Then my throat (which started as a sore throat) started swelling shut. I had this rash all over my legs like tiny blisters and it hurt so bad.

It did however control my partials from generalizing, but didnt do much to stop the partials.

 

[Dazed]

I don't know what to do. My quality of life is ok. Except for the random obvious glitches. Obviously I cannot drive and partake in normal day to day life. I have hobbies and proffesional things I have lost. But I have two young boys who love me and we share some wonderful moments. Simple pleasures walking on beaches. Fixing up their bikes and stuff. They are totally aware of my situation. I would not like to spoil what I have with migraines and crazy rashes. I have to think how these side effects will impact the quality of life for my boys.

 

[Dazed]

Rae I have just read your blog. I feel for you. Your situation makes mine seem a walk in the park. I am grateful that I don't suffer to an extreme as many of you do on this site. Peace and love to you.

 

[Dazed]

Also thank you Cint, Survivor and nakamova. For your input. I don't know what type of seizure I suffer from. It does seem hard for my neurologist to pinpoint any type. Thats why I came here searching For knowledge. I do really appreciate everyone's advice and will continue to do some research. Seems I need a good chat with my neurologist. I am so pleased I have found this site. I feel very relaxed chatting about some very personal issues, and hope I can help others in due course. love and light.

 

[dbrownpilot]

I avoided taking meds for a variety of reasons. My seizures just kept getting worse until I really couldn't function anymore. After I got on the meds, at least I only had partial/complex seizures. (Eventually I had surgery anyway.) My experience is only my experience, but I found the drug side effects were less problematic than increasing partials and tonic clonics.

Incidentally, and again, this is pure conjecture on my part, but I wonder if people for whom meds are effective without serious side effects come to sites like this as often as people who are still suffering major quality of life complications.

Best wishes for you.