catamenial epilepsy

[suebear]

Does anyone experience this type of epilepsy and if so, how do you deal with it?

Thanks for sharing.

 

[Nakamova]

Hi Suebear --

Here's a link to a list threads in the archives on the subject:
http://www.coping-with-epilepsy.com/forums/tags/catamenial epilepsy.html

Plus a recent pubmed article: http://www.ncbi.nlm.nih.gov/pubmed/21451944

 

[suebear]

I've already looked it up. What I want to know is who on here deals with it.
I'm talking to my neuro on it and I'm curious to know more about how people deal with the issue during that time of the month from a personal point of view.

 

[tinathesingergirl]

SueBear,

We are about 95% sure that what I have is Catamenial Epilepsy since all of the seizures i have had have been on day 1 of my cycle except maybe 1 or 2 which have been when I have been ovulating but still there is that connection so there is still that hormone connection. My Doctor however.....He is not sure but at least now he is listening and it has been 3 years since diagnosis of epilepsy so now I am thinking of going to get second opinion. So far I have been on 2 AED drugs keppra and topamax ( I only get T/C's no auras) of varying dosages currently the regimen is 2x keppra 1500mgs, Topamax 200mgs, I am also on Nuvaring wich is 3 weeks on 1 week off for my period which has helped with irregularialty of periods and the serverity of seizures for me they are much less severe since i have started on the nueva ring. I am also on lisonopril as a precaution for stroke for high Blood pressure. I was thinkin on the advise of others about the progrestrin creme since others have been having some success with it. would love to do some sort of of bio identical hormone as well but dont know if insurance would cover since I am only 37. Just wish there a clerarer cut solution out there and some better research studies they just dont know enough about it yet i guess....

 

[suebear]

SueBear,

We are about 95% sure that what I have is Catamenial Epilepsy since all of the seizures i have had have been on day 1 of my cycle except maybe 1 or 2 which have been when I have been ovulating but still there is that connection so there is still that hormone connection. My Doctor however.....He is not sure but at least now he is listening and it has been 3 years since diagnosis of epilepsy so now I am thinking of going to get second opinion. So far I have been on 2 AED drugs keppra and topamax ( I only get T/C's no auras) of varying dosages currently the regimen is 2x keppra 1500mgs, Topamax 200mgs, I am also on Nuvaring wich is 3 weeks on 1 week off for my period which has helped with irregularialty of periods and the serverity of seizures for me they are much less severe since i have started on the nueva ring. I am also on lisonopril as a precaution for stroke for high Blood pressure. I was thinkin on the advise of others about the progrestrin creme since others have been having some success with it. would love to do some sort of of bio identical hormone as well but dont know if insurance would cover since I am only 37. Just wish there a clerarer cut solution out there and some better research studies they just dont know enough about it yet i guess....

We're just starting to figure this out after years of not knowing so it's a new learing experience for me. Thanks for the input!

 

[jonsey]

hi ya , my daughters seziures have been around her time of the month . Its been a long 6 years to get to a point when the Doctor in the hospital has sat up and listened to her . Only for my GP airing my concerns to Mr Smith who is a consultant at the hospital . Since then Amy has had the depo which she has every 10 weeks . She is also taking lamactal 300 mg daily . When amy seziured it was usually down to a break through . On the whole it worked well . Amy might have seziure may be 3 a year . But this was still not perfect . Being 21 she wants to drive like her cousins . So back to the hospital. We had an appointment with the epilepsy specialist nurse, whom took on board all our concerns . She has put her on keppra. Which she takes at the moment 250mg twice a day still with her lamactal. She will increase the keppra in the next couple of days to 500mg in the morning and 250 mg at night , still takes lamactal and will still have the depo . Eventually she will be on 1000mg of keppra, then weening her of the lamactal . Fingers crossed this might be the one. Hope all goes well you end

 

[Krista2882]

I do.
Luckily my seizures are under control enough with meds (I get simple-partials) that when I do get them at that time of month, they're pretty minor.

 

[tinathesingergirl]

Yeah mine seem to be break throughs as well. We are trying to get my seizures under control glad to hear that the lamactal is working for her is she on the generic or the brand names for her meds just curious. I am on the generics for both of mine and was thinking the other day if it would make a change. Also is she on Keppra XR? I thought about the depro shot but did not want the comittment and thought the nueva ring would be easier and less complications if something went wrong health wise. What kind of seizures does Amy have?

 

[jonsey]

hi tinathesingergirl

Amy has tonic colonic seziures only when she has a break through or when her depo is coming to an end . We asked to try keppra after a meeting with our epilesy nurse . Lamictal is branded . But if all goes well she will be weaned of lamictal. We also looked at the merina sure i havnt spelt that right, but amy was not keen on that.

Its still early days yet with keppra just got everything crossed at the moment

 

[tinathesingergirl]

Jonsey, I am on the Nueva Ring that has worked pretty well for me you might ask if that might be a good option for Amy. It is branded though. There is a coupon available from the maufacturer for the first six months after so it cost me after the coupon about $6 US after insurance now I pay a $15 co pay once a month for it after my insurance. I get my period once a month with it I wear the ring for 3 weeks, my period come like clockwork for about 4-5 days and it is lighter than it was before. I was having some terrible problems with desire with my meds before i went on this with my husband this seems to have taken care of it for me. I have Tonic Clonic seizures also. They also seem much lighter then they were before. At least thats what we have noticed and we noticed that almost immediatly after I stated taking this med. I have been taking the keppra almost 3 years now.Topamax almost a year. I did not want to do the depo or the merina because of the commitment and risks the nueva ring seemed the safer option after discussing it with both doctors my nuero and my gp they both seemed to agree that it was the funny thing is that if you look at the insert and on the web though it is counter indicated but if you talk to a doctor or a pharmicist a good one like I have who really know their drugs they are gonna tell it is safe as i said I have had no side effects. but everyone is different. No surgury to go though if there is a problem. very easy to take in and out yourself like a tampon really.... tina

 

[jonsey]

thankyou tinathesingergirl,

I will take your advice and we will have a chat with amys doctors , and see what they think about the nueva ring concept . Amy is adding an extra 250 mg of keppra to her regime. She now is taking 750mg for the next two weeks . Shortly after we will have an appointment with the epilepsy nurse . jonsey (sharron )

 

[RobinN]

My daughters were centered around her periods as well, and we tried many different approaches. What has kept her med free and seizure free for over a year now, are nutritional changes.

Her time of month is still rough, meaning she does not feel well. Thankfully we have raised her seizure threshold and she is not experiencing the 6+/mo tonic clonics she was having when on medication and eating the Standard American Diet.

 

[jonsey]

hi robinn

We hit a brick wall with diets, doctor in hospital dissmissed it with a tut and a shake of her head . We watched the film To do no harm, that what prompted us to ask the question. I did google the kenotic diet, the closes hospital for us was in manchester.

Maybe i should be more vocal, and pursue the possibilty of looking into a more realistic change to her diet .

Im so glad that i stumbled onto this site . The doctor and amys epilepsy nurse wont no whats hit them when we visit next

 

[RobinN]

You do NOT need a doctors approval to make changes to families nutritional choices. That is still considered a free choice... (except recently in some school cafeterias).

If you use a medical diet, it is the ketogenic diet that I think you checked into. There is also the modified atkins diet, and the low glycemic diet.

NEVER let a doctor dismiss a question with a shake of the head. That is simply rude, and I know many that have improved by making nutritional changes. She is wrong, as was our first neurologist, who told us that diet had no connection.

I am glad you stumbled on the house that Bernard built too. It was a support that I know I could not have done without when I was struggling.

 

[epileric]

Robin may be right that you do not need a doctors approval for what you decide to eat but diets do create changes in the body so your doctor should be informed.

Also, if you do chose the ketogenic diet please make sure you're monitored by a dietician with experience in the diet (you may even want to ask them about the other diets Robin mentioned). However, the Ketogenic diet is one that needs to be closely monitored or it can have a lot of bad adverse effects. You may want to talk to Dutch Mom since her child has been on the ketogenic diet for a while.

The ketogenic diet is not a benign, holistic or natural treatment for epilepsy; as with any serious medical therapy, there may be complications. These are generally less severe and less frequent than with anticonvulsant medication or surgery.[27] Common but easily treatable short-term side effects include constipation, low-grade acidosis, and hypoglycaemia if there is an initial fast. Raised levels of lipids in the blood affect up to 60% of children[35] and cholesterol levels may increase by around 30%.[27] This can be treated by changes to the fat content of the diet, such as from saturated fats towards polyunsaturated fats, and, if persistent, by lowering the ketogenic ratio.[35] Supplements are necessary to counter the dietary deficiency of many micronutrients.[4]

Long-term use of the ketogenic diet in children increases the risk of retarded growth, bone fractures, and kidney stones.[4] The diet reduces levels of insulin-like growth factor 1, which is important for childhood growth. Like many anticonvulsant drugs, the ketogenic diet has an adverse effect on bone health. Many factors may be involved such as acidosis and suppressed growth hormone.[35] About 1 in 20 children on the ketogenic diet will develop kidney stones (compared with one in several thousand for the general population). A class of anticonvulsants known as carbonic anhydrase inhibitors (topiramate, zonisamide) are known to increase the risk of kidney stones, but the combination of these anticonvulsants and the ketogenic diet does not appear to elevate the risk above that of the diet alone.[36] The stones are treatable and do not justify discontinuation of the diet.[36] Johns Hopkins Hospital now gives oral potassium citrate supplements to all ketogenic diet patients, resulting in a sevenfold decrease in the incidence of kidney stones.[37] However, this empiric usage has not been tested in a prospective controlled trial.[8] Kidney stone formation (nephrolithiasis) is associated with the diet for four reasons:[36]

Excess calcium in the urine (hypercalciuria) occurs due to increased bone demineralisation with acidosis. Bones are mainly composed of calcium phosphate. The phosphate reacts with the acid, and the calcium is excreted by the kidneys.[36]
Hypocitraturia: the urine has an abnormally low concentration of citrate, which normally helps to dissolve free calcium.[36]
The urine has a low pH, which stops uric acid from dissolving, leading to crystals that act as a nidus for calcium stone formation.[36]
Many institutions traditionally restricted the water intake of patients on the diet to 80% of normal daily needs;[36] this practice is no longer encouraged.[4]

In adults, common side effects include weight loss, constipation, raised cholesterol levels and, in women, menstrual irregularities including amenorrhoea.[38]

http://en.wikipedia.org/wiki/Ketogenic_diet#Indications_and_contra-indications

 

[RobinN]

Informed yes, approval no

 

[jonsey]

morning

i picked amys prescription up last night , got it home opened them up . The box is different and the tablets (keppra) she first had was a dark blue , today she has got very pale blue and the box looks very plain, should i take them back and insist on the first ones she is trailing, both tablets are 250 mg in strength

 

[epileric]

It sounds like you were given the generic. Phone the pharmacy tell them about the difference & ask if that's the case.

It might be an issue of insurance covering one & not the other.

 

[jonsey]

thank you for the quck reply , i will call in to the chemist on the way too work this morning

 

[epileric]

You're very welcome Jonsey.