ADVERTISEMENT

Memory loss & muscle cramps

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

This is so weird to me, I've been diagnosed with Epilepsy since I was 5 years old. I am now 26 and not on any medication (took myself off it in college so I could function up to par with the rest of my classmates). I have been getting horrible cramping in my feet with very little movement that lasts hoooours for about 10 years that I can remember. I also have horrible short and long-term memory, which I blame on the seizures themselves since I'm not on any medication anymore. I ALSO have developed Reynaud's syndrome in the last 10 years, which I find to be very coincidental. I know you posted this quite awhile ago but if you've found any answers to your problems or any information at all, please let me know - I am very interested!

Re: Memory loss & muscle cramps

Hello, Jenn,

I came across this site while researching a possible link between epilepsy (or at least seizures) and  foot cramps. Not for myself personally, but I have two spaniels who are mill rescues. Both of them get foot cramps (probably from having spent the first three to six years of their life with nothing to walk on but the wire of their cages). One of the dogs also has seizures. 

The other dog has had foot cramps ever since I adopted her, but this one has just started  having cramps with her seizures. She will have a short seizure, then seem to recover, then start all over again, but with the cramps. I might not have realized about the cramps if not for my other dog. Because of her, I know how the paw seizes up.

I do not use conventional medication for them ( I believe that phenobarbitol is most commonly prescribed), preferring alternative remedies which do not have undesirable side effects.

For the cramps, I use the Bach flower essence 'Impatiens'. I also give both dogs a calcium supplement, as insufficient calcium intake can bring on cramping.

For the seizures, I use something called Doc Ackerman's Epilepsy and Seizure Formula. Here is a link to it. You might find the ingredients helpful, as it contains calming herbs which  are used regularly by humans to relax the nervous system. In addition to that remedy, I give them avena sativa (wild oats - like in oatmeal) capsules. Avena is a nerve tonic. I also use the herb skullcap (also spelled scullcap), which for some reason is not included in the Ackerman formula.

http://www.onlynaturalpet.com/product_detail.aspx?item_guid=6ed0989e-5ee...

I am sure that you are right about the link between seizures and cramps. One might even think of cramps as mini-seizures, localised to a particular limb. I am now beginning to wonder about the relationship between the seizures and the foot cramps. Do they simply occur together, or does one cause the other? If there is a causal effect, which causes which?

I cannot  offer any insight on the memory loss, as I cannot ask my dog about it. As for the Reynaud's, I myself have had it for years - without having epilepsy or seizures. But over the past few years, I have seen an increase in leg and foot cramps.

I did some online research, and it seems that your Raynaud's  might not be coincidental. I found an article in the BMJ (British Medical Journal), about what they call 'secondary Raynaud's phenomenon'. The article - most of which is in technical medical language, incomprehensible to me - says that a study has shown that "Secondary Raynaud's phenomenon occurs in association with
underlying disease, including neurological disorders.
We describe Raynaud's phenomenon in patients with sympathetic
denervation due to primary chronic autonomic failure."

They talk a lot about the "autonomic nervous system", so I looked that up on Wikipedia, and found it to be "the part of the peripheral nervous system that
acts as a control system functioning largely below the
level of consciousness, and controls visceral functions.
The ANS affects heart rate, digestion, respiration rate, salivation,
perspiration, diameter of the pupils, micturition (urination), and sexual arousal. Whereas most of its actions are
involuntary, some, such as breathing, work in tandem with the conscious
mind."

Here are the links, in case you should wish to follow up on them:

http://www.bmj.com/cgi/content/full/316/7129/438

http://en.wikipedia.org/wiki/Autonomic_nervous_system

Re: Memory loss & muscle cramps

Hi !

I'm so glad you found this forum, and are finding it useful in answering your questions. I find it absolutely deplorable when a doctor won't answer your questions thoroughly. I am also a bit concerned about a neuro that would take your memory problems lightly, and not work with you to figure it out. Memory problems are one of the most common complaints of people suffering from seizures.

I have both simple partial and complex partial seizures. I was first diagnosed at age 19, when going to a neuro for migraines. I took Dilantin for a few months, hated the side effects, decided the neuro had no clue what he was talking about, and went off the med. I never had a seizure which I would have recognized, because all I knew about epilepsy was tonic/clonic seizures. When I was 47, I had my first recognizable seizure. That was 2 years ago, and I have never yet been able to get my seizures under control. My memory is absolutely deplorable. I actually have days when I lose memory of the whole day.

If you don't want to change dr.'s, I would suggest that you print out some info on memory problems, from some of the medical research info you can find on the web, and take them to your doc. If he still "blows it off", then I personally, would change docs. If you need help finding some info, let me know, and i'll be happy to help. You might start looking for an epileptologist in your area (a neuro who specializes in epilepsy). I know when I found mine this year, she has helped me so much in understanding my condition, and looking for the best treatment options. She never discounts my views, and takes them very seriously. After all, I am the one that lives with the side effects of both the Epilepsy and the meds.

Best Wishes,
Barbie

***************************************
"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Memory loss & muscle cramps

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

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

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=...

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!

Re: Re: Re: Memory loss & muscle cramps

Hello a,
Thank you for posting the link on cramping. I will read it. I'm with you on what to recognise as part of E, meds or nothing to do with either. It's a hard judgement call at times! Smiles!

-Spiz