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.

Memory loss & muscle cramps

Fri, 12/23/2005 - 12:15
Thank You ALL for sharing your experiences! I began taking Keppra in Aug/Sept 05 for partial-complex-2ndarily generalized seizures (mine began on Thanksgiving '03 - I was 25 - and I've had 3 more in the last 2 years)...anyway, when I noticed my short & long term memory slipping, I asked my neurologist about it. He told me that Keppra could *not* be affecting my memory, especially since my dose is only on 500 mg (he thinks I should up it to 1000 mg). I flatly refused to 'up' the dose (against his wishes) b/c I suspected Keppra was 'messing w/my mind.' But, even though I thought it was the Keppra I've been afraid it's something else, esp since the dr. said it couldn't be the med. I've considered all kinds of awful things - do I have a brain tumor? do I have some sort of mental illness? etc. The dr also made me feel like I wasn't really having memory problems. So I tried to document examples when they would happen (misspellings & the fact that for > 10 yrs I knew my bank card #, but all of a sudden I could only remember 4 digits (incorrectly)), however he made me feel like I was crazy for even thinking I was having memory lapses. However, after reading your posts, I have much less doubt and fear re: my memory loss. It's scary to know what it is (and not knowing whether its permanent), but better than not knowing. I have an appt in Jan 2006 and was going to bring up the memory loss again. Now, I can actually have some confidence in my experiences(although I probably can't mention where I got it, since he'll discount any non-medical source). Does anyone know why do doctors try to refute acutal experiences? Also, none of my doctors told me what kind of seizures I was having (besides the fact that they were tonic-clonic). Once I began researching on the web, I self-diagnosed w/partial-complex secondarily generalized (it wasn't very hard to do since my symptoms fit the bill to a T!). One other question (that I should probably post in another thread but I'm just so excited to have found an outlet for my questions!!!) - my seizures began about 6 months after i started cramping (all over my body) from only slight muscle use (e.g. putting on socks & my foot would cramp, or holding something of medium weight and my hand would cramp). Also, w/in a month after the 1st seizure I developed Reynaud's syndrome (where, b/c of temp change, the blood from your extremities, hands/toes, withdraws towards your bodys core - your finger & toe tips get white & really hurt). Has anyone else had these kinds of 'coincidental' symptoms w/their sz? I asked my doctor if it's possibly some metabolic or nutrient deficiency thing - he said possibly, but we'd have to run a whole battery of tests & we'd most likely find nothing. I find this pathetic - I'd like to run the tests if it could mean solving or finding out what's causing them. I don't want to switch drs b/c he's actually the 3rd neur I've had and he's supposed to be good (1 recommendation & he's on some board - I actually have expensive med insurance and he's not cheap). But if I switch again I'm afraid I'll get the 'difficult patient' notation in my medical files. Any suggestions?

Comments

Re: Memory loss & muscle cramps

Submitted by Anonymous on Wed, 2005-12-28 - 00:16
When memory problems are part of the picture, it often helps to get testing, called neuropsychology testing. This can help tell what kind of memory problems,look at other cognitive functions, etc. Test results can help you understand if the memory / cognitive problems are due to whatever is causing the seizures, or may be side effect of meds or due to something else! Take a look at the home page of epilepsy.com for more info on memory and thinking... http://www.epilepsy.com/epilepsy/thinking_memory.html http://www.epilepsy.com/epilepsy/memory_treatment.html Also, if problems talking to the doctor, see if he or she has a nurse working with them who can meet with you.. may help with learning more about epilepsy, looking at resources you may need, managing how epil affects day to day life.. if no epilepsy nurse, ask about a social worker or psychologist. http://www.epilepsy.com/epilepsy/healthcare_team.html Take care, Epilepsy.com Resource Specialist

Re: Memory loss & muscle cramps

Submitted by spiz on Thu, 2005-12-29 - 11:23
Hello! I have cramping in my all-over alot but had never connected it with epilepsy. Interesting thought. Some doctors resent the information gathered on the internet while others encourage it as a means of better understanding. The same as some doctors don't listen to you, the one with it. They take it as we don't know what we are experiencing while other doctors are more than willing to listen to us and learn right along with us. The difference is the doctor. If yours isn't listening to you or you are not comfortable with him/her...seek til you find one you are happy with. You matter and you know what your body is doing better than anyone. Finding a doctor that will listen to you is very important. The place on this site I find most helpful is http://www.epilepsy.com/epilepsy/research_articles.html The information is broke up into several catagories and is very helpful to go to regarding information. It has a catagory on 'Cognitive and Behavioral Disorders' as well as 'Patient-doctor Relationship'. Plus alot more catagorial information you may find useful. Good luck and I wish you the best! -Spiz

Re: Re: Memory loss & muscle cramps

Submitted by ar5236 on Thu, 2005-12-29 - 15:09
Thanks so much for your responses - I will follow-up on all of them. I'm keeping my original appt (giving it one more try) but I went ahead and made an appt w/another neuro. Over the holiday I read many posts & went to many sites - from all I've read it looks as if my best bet will be at a center and/or with a specialist. I've stayed off the web for a few days b/c I was getting overwhelmed so thanks for pointing me to specific sites. I'm especially grateful for the tip about determining if the memory probs are a result of the meds or something else. That actually reminded me that I'd begun having memory problems while not on meds. I probably subconsciously 'forgot' that fact since (to me) that's one of the scariest aspects of my condition. There are so many clues/symptoms it's hard to figure out what's what - and although I wish I could solve it myself, I know I need the help of a thorough doctor. My current neuro wants me to accept the fact it's idiopathic w/o doing any tests besides the very basic (MRI, Catscan & EEG). I asked about blood tests, metabolic issues, etc. he said we could do those things but we'd most likely find nothing and then he dropped the subject. I didn't press it then b/c I thought I could do research and determine which tests I needed - however, that proved more difficult than I thought. Re: cramping - if you do a search on the forum for "cramp" you'll find 1 or 2 posts from 2-3 people who also having cramping - one similar to me (short cramps from slight muscle use), one of the other people experiences extreme cramps lasting hours. I also began researching just cramping (not related to szs) and found a site that was helpful b/c it has a section near the bottom, "When to See a Doctor:" http://orthoinfo.aaos.org/fact/thr_report.cfm?Thread_ID=270&topcategory=General%20Information Thanks again - your advice really means a lot. I never knew how much the support/communication from others experiencing similar trials/tribulations could help. I wish all of you the best too!

Sign Up for Emails

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