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.

Dilantin and alcohol intake plus some other questions

Tue, 08/13/2019 - 19:27
Hello to all! I'm having some questions and I think it would be really helpful if you could share your experiences. Approximately 3 yrs ago (when I was 30 yrs old) after having very strange feelings I discovered I have an AVM of 6cm diameter located in the right frontal lobe (and so I found that the strange feelings were epileptic seizures although not motor, just cognitive). I started being medicated with keppra 500mgs per day. I still had seizures approximately 1 time per month so the Dr increased the dosage to 750mgs/day. After this I couldn’t properly sleep and I lost a few kilos due to lack of appetite, so we returned to the initial dosage. Additionally I had an aneurysm in the posterior cerebral artery and the question was, should we coil the aneurysm and leave the AVM untouched or remove it and at the same time treat the aneurysm. After discussing my exams with several Drs around the world it was decided not to touch the AVM because according to them the probability of success was bellow 50%. While coilling the aneurysm there was a dissociation of an artery which provoked a minor stroke, without any physical or mental damage (this happened two weeks before I defended my PhD so I was in the hospital studying for the defense…). Since my Dr always told me the only thing I could do to decrease the probability of rupture was to quit smoking, I did a huge effort and I quit (since 4.5 months I don’t smoke, after 17 yrs of smoking one package per day). Anyway, everything was good, until two days ago. I’m at Greece (my boyfriend is Greek and we always come here for vacations) and I started feeling bit strange. The symptoms were weakness, very mild headache and heavy head, like the intracranial pressure was too high. It was nothing serious but since these symptoms were similar to what I felt when having the stroke I decided to go to the hospital and I found the AVM had bled. It was a very minor bleeding that doesn’t come from a ruptured aneurysm but from a very small vein in the AVM. Again, being unlucky I’m very lucky because there are absolutely no mental or physical damage. Now my questions… My Dr back in Portugal always told me not to stress and to try to live a normal life without being afraid so that this doesn’t stress me increasing the blood pressure and consequently the probability of severe rupture. Since now maybe the panorama changed and I cannot reach him, I’m very confused because the neurologist here told me to completely change my life! The rules are: I cannot work a lot (being a scientist I really need to work a lot), cannot go to the sun (like the beach), cannot do physical exercise (not even to go up a mountain, for example, or dance as I love to do), cannot drink one drop of alcohol (I never drunk a lot but the fact that they are forbidding me this really stresses me out) and avoid flying as much as I can (being a scientist I always need to travel to conferences and having a foreigner boyfriend demands me to flight some times per year). This means a complete change of my life. The neurologist told me that all of these things increase the probability of having a seizure which increases the probability of bleeding (my Dr never ever mentioned this...). Now they changed my medication to dilantin, 300mgs per day, saying to leave keppra out because the 500mgs are non therapeutic (like for 2 yrs I’m taking pills that don’t do absolutely anything to me? Why would my Dr prescribe this if it was not doing anything?). So, you understand my concerns… Since I cannot reach my Dr and until the end of the month I’m stuck here and it would be nice to have the opinion and experiences of you guys so that you can help me out to better understand these discrepancies. I’m really feeling that if it is to live such a constrained life as this, better not to live at all. I fought for so many yrs to be an astronomer, with these measures they are taking even this away from me, not to talk about a simple day at the beach or a simple hike in the mountain, or to have a beer with friends from now and then… Another thing that made me very confused was that they told me that if it has to happen it happens, no matter what I do (basically that there is a probability of rupture that is now slightly increased after the 1st rupture, and even if I take all the precautions it might happen, or not). So why to live such a constrained unhappy life just to end up having an hemorrhage anyway…? Actually when I had this rupture I was not working, not in the sun, I slept and ate well so… nothing associated with these risk factors they mentioned. Anyway I would like to know if you feel that any of these factors increases the probability of having seizures. With the previous medication of keppra I was drinking alcohol from time to time and I had absolutely no problem. What about this new drug? Did you ever tried to drink while being medicated with dilantin? Do you find that anytime you are exposed to sunlight or you do moderate physical effort or to moderately drink alcohol increases the probability of having seizures? Thank you so much for your time and attention. All the best, Iris.

Comments

Hi IrisB,Thanks much for

Submitted by Anonymous on Tue, 2019-08-13 - 20:22
Hi IrisB,Thanks much for posting, it sounds like you’ve been through a lot. It’s important to remember that you NOT alone and that we do have resources available that can help. If you ever need to speak with someone immediately,  please contact our 24/7 toll-free helpline: 1-800-332-1000,  https://www.epilepsy.com/living-epilepsy/247-helpline or by calling the national suicide prevention lifeline: 1-800-273-8255, https://suicidepreventionlifeline.org/ Treatment varies for each individual, so it’s important that you continue follow-up with your healthcare team to express your concerns and, as well as any potential side effects, seizure types, frequency, changes in behaviors and symptoms.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdfFor assistance and information regarding second opinions, or finding an epilepsy specialist near you, please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions  https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist  https://www.ilae.org/  Moderate to heavy alcohol use is never recommended for people with epilepsy. Alcohol and some seizure drugs have similar side effects and using both at the same time can lead to bothersome and potentially dangerous problems. Learn more about epilepsy & alcohol here: https://www.epilepsy.com/learn/triggers-seizures/alcoholFor additional information about triggers, seizure medication & side effects,please visit:https://www.epilepsy.com/learn/triggers-seizureshttps://www.epilepsy.com/medications/levetiracetamhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectshttps://www.epilepsy.com/medications/phenytoin Our Wellness Institute program tackles multiple dimensions of daily life and resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical &effective strategies to enhance your well-being, visit:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-tools  

Hi Iris.  My heart and faith

Submitted by Sweetkamie20 on Fri, 2019-11-22 - 21:28
Hi Iris.  My heart and faith goes out to you.  I feel similar to you-what is the purpose of living if you feel dead?  The question you might want to ask yourself is can you have a full life without some of these activities.I have found a way to be content with substitutes or modifications.  For instance, I was an athlete.  It was my life.  Then I developed epilepsy. My seizures were often related to hyperventilation i.e. exercise.  I explored other hobbies and discovered I love watercolor painting, writing, legal research, yoga, etc.  These are some of the substitutes that work for me.  I can tell you that I do miss sports sometimes but most of the time I don’t have time to miss them...Maybe you will discover some things are not worth substituting and others are.  The way I figure out the right answer for me us by answering the question: if deciding to do this turns out really bad, how hard will it be to forgive myself?  

Sign Up for Emails

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