Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

birth control switch and increase in possible seizures

Fri, 05/27/2005 - 08:09
I am not diagnosed with epilepsy, but I have very epileptic type symptoms. A doctor 7 years ago (actually my psychiatrist at the time) told me that I most likely have Temporal Lobe Epilepsy. The potential complex partial seizure diagnosis was kept on my record at the hospital due to repeated episodes of me smelling something like it is VERY gross and dead that no one else can smell sometimes, then entering a dreamlike state where sometimes I walk around aimlessly and talk to myself. I am also bipolar and have severe Post Traumatic Stress disorder from being violently attacked and raped 2 years ago. I had to take a medical leave for the Post Traumatic Stress because of anxiety (that would cause me to vomit every day). Just to give a little history...While i was on medical leave last year, I had to switch psychiatrists (the one who gave me the potential seizure diagnosis retired, Dr. C, then I was given this new psychiatrist, Dr. EVIL who REFUSED to give me any sort of med to handle the anxiety). My new psychiatrst, Dr. V, said that part of the reason that the PTSD had accelerated symptom-wise to the point of me being temporarily disabled, was becuase Dr. Evil not treating me with the appropriate meds.I have been on Lamictal for years because I have an atypical form of bipolar where I have extreme mixed episodes. But the Lamictal was not helping with the PTSD symptoms and the severe anxiety, so I was given a tricyclic antidepressant, Doxepin to only help with the vomiting daily, plus Klonopin to handle the anxiety attacks. I also have 'shakes' sometimes, not full blown grand mal seizures, but mostly upper body stiffening then convulsions, that last number of seconds in which I do not lose awareness, but can't talk. After they happen, I usually stare off into space for a bit I am told. I have over 30 of these a day.I find out later that all tricyclic antidepressants (TCA's) lower the seizure threshold. Within one month of being on Doxepin, I had wrecked my car due to loss of consciousness. I felt 'weird'.. like I was going in and out of a dream. I just thought I was tired and had to make it back to work (I was coming back from seeing Dr. V) so I rolled down my window to keep awake. Within 4 miles I had lost motor control and went off the road, I was partially conscious after my car went off the road but I couldn't move!! So I couldn't take my foot off the gas peddle. It took me 40 yards crusing down the gravel shoulder of the road to finally be able to move my arms, but I still coudln't take my food off the gas and I didn't even know my foot was still on the gas because I was very confused. I hit a mailbox and skidded across to the other side of the road where my car ended up hitting a junked out loader for a tractor in some lawn.This was the first episode where I knew something else besides the PTSD was causing physical problems.Recently, I have switched birth control, from being on the pill, to using the NuvaRing (so I wouldn't forget to take the pill, my memory is WRECKED lately). In the two months that I have been on the NuvaRing, I have had 2 larger seizures where I will have my typical shaking for a bit, staring off into space, but that increased in frequency until I slid out of my chair at work and convulsed on the floor for a number of minutes. I wouldn't consider this a grand mal seizure as I was in and out of consciousness but couldn't talk to get help. I work in cubicle land for an engineering department at a large corporation and my cubicle is very out of the way. No one noticed that I was having a problem. Luckily my father works at the company too and came over to bring me something, and he held my head so it wouldn't hit anything. This happened yesterday. The other episode happened on May 3rd I believe (my memory is becoming decreasingly accurate, I forget everything now and canot concentrate well). That time I had suddenly felt like I was going to throw up and went to the bathroom, and someone found me passed out on the floor. The last thing I remember was crouching over the toilet, drooling, waiting to vomit. They woke me up but I was very out of it, and they sat me down in the foyeur to the ladies bathroom and I had more convulsions on and off, then my head would drop, I would go limp, then stiffen and have more convulsions. Again, I was in and out of it consciously.. so the safety squad called an ambulence.I had seen a nuerologist earlier this year and he did a sleep deprived EEG which came out normal according to him, and had a normal MRI. He was going to test me for narcolepsy, but due to the fact that I take a LONG time to go to sleep due to the PTSD, I knew his Multiple Sleep Latency Test would be a waste of my time and money so I cancelled it and my future appointment with him as i felt he was not taking me seriously.Now, since the switch from the pill to the NuvaRing has caused (or what I think has caused) an increase in severity and frequency of whatever is really wrong with me, I have an appointment with a new nuerologist June 14th.Does anyone here use the NuvaRing?? I read in some fine print that if you have seizures, you should talk to your doctor about using the NuvaRing, even though it has approximately the same type of hormones as the Pill.Also, the type of possible seizure problem I am describing, doesn't follow the description for any typical seizure I have read about. I am wondering if the new nuerologist is going to just say it is a conversion disorder (PNES, Psychogenic seizures) due to my clean EEG and MRI previously.I am nervous about all of this and haven't been driving due to totalling my car last July. If it is psychogenic, it has been seriously messing with my personal and professional life. I feel like a freak at work now because a lot of people know what has happened and I feel they are treating me differntly now, almost like I'm retarded or something.Has anyone here ever had problems getting a diagnosis??The nuerologist I was seeing formerly said that I have a 'clean bill of nuerological health' and I think he is full of BS.Sorry for rambling, so here is a recap of the questions I have asked:*Anyone here on the NuvaRing, and if so has it affected your seizures and/or frequency of seizures??*Has anyone here ever had problems getting a diagnosis and been nearly dismissed by nuerologists??Thanks,Jodi (age 26)

Comments

Re: birth control switch and increase in possible seizures

Submitted by Courtney on Sun, 2006-04-09 - 22:32
Your story sounds strangely similar to mine. My seizures started when I was 12 (when puberty started for me) and since then the doctors have always referred to them as a conversion disorder. My seizures get worse during the week before and during my period, so one doctor told me to get on birth control to help control them. My HMO recently increased the price for the patch, so I am about to start the Nuvaring today. I have yet to get a diagnosis for my seizures and I have lived with them for 8 years. Today I found out about a neurologist/endicrinologist from a friend who may be able to help me. My goal is to find an answer within seeing 10 doctors or 10 years, whatever comes first.

Re: Re: birth control switch and increase in possible seizures

Submitted by Keens on Sun, 2006-04-09 - 23:42
Hi Courtney, my name is Sandy (keens) and my daughter also started seizures at 12 and also since she has started puberty. She is now almost 14. My question is, did you just start having seizures all of a sudden or did you have something which causesd your seizures to start? I am asking because my daughter was a happy, healthy kid and had no dramas in her life, and then suddenly she started having tonic clonic seizures. She is always asking if her seizures are just because she is going through puberty or will she have them for the long term. I guess I am asking you if you think you will just "out grow" the seizures yourself. I'd like your thoughts on this so I can pass it on to my daughter. Keep well, Sandy.

Re: Re: Re: birth control switch and increase in possible seizur

Submitted by Courtney on Mon, 2006-04-10 - 09:51
Sandy, nothing traumatic happened to me when the seizures started. Originally, they were just a shake before my body relaxed to go to sleep. However over time they changed in how often they occurred (to about 20 or more per day), how long (runs from a few seconds to an hour) and the severity (small ones to severe ones where I have problems with muscle control afterwards). I wish I could say that I think I will outgrow them, but since they seem to be getting worse I do not think I will outgrow them. I know someone else who has seizures related to hormones; they got better once she was put on medicine. However, she is going through menopause now and she now has seizures once again. I plan on getting my hormone levels checked to see if there are abnormalities that could be fixed by medicine. All I can say to you and your daughter is that things will get better and easier. I found the seizures are easier to deal if people that you love know how to handle them. She is lucky to have you by her side. I hope that she does “outgrow” them and wish her the best. If you want to contact me, let me know. I would be very willing to talk to you or your daughter about this. Never give up hope. While I have had them for the past 8 years, I am not resigned to having them for the rest of my life and I have yet to give up hope on finding a treatment.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.