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Catamenial Epilepsy: Finally a solution!
Fri, 07/10/2009 - 00:08I just wanted to share this with other women on the forum as a possibility for them to entertain if they are one of those cases where their epilepsy is both idopathic and refractory. It took me a long time and several drugs/dosages/siezures to figure this out on my own. I have catamenial epilepsy, meaning that my menstration triggers my seizures. And for many women with epilepsy this is a trigger, but for me this was possibly the biggest one I could pinpoint. I suggested to my nuero that we approach the problem hormonally ontop of my Topamax, and he agreed. I have started taking the Nuvaring, which being localized doesn't interact with the Topamax very much and hasn't given me very many side effects as of yet, which is basically progesterone and a little estrogen.
I am siezure free now for four months. I have had a few small auras, but that is nothing compared to the number of large seizures I would have every month over the last five years.
I would encourage women who are in similar circumstances to read up on catamenial epilepsy, track their period, and see if maybe there is an alternative present to all the drugs we have been taking. I would be glad to finally lower my Topamax if this works! Everytime I upped it I saw more side effects and minimal results, and thats considering it's been my best drug so far.
EDIT: I decided to edit this with an update since I got so many replies. I was on the Nuvaring (and 250 topamax succesfully) for a year and now moved on to the Mirena IUD which has progesterone in it. I am sz-free since that post, well over a year. For me at least, Mirena has proven a good option so far, although some research around the net makes me think it wont last the 5 years because Topamax metabolizes it faster. Still, it's the best option I have right now. A thing about catamenial E. I've come to understand from reading some of the literature...almost all women with E. will have more sz during certain cycles of her menstruation. Catamenial E. is a type of refractory epilepsy. It describes seizures that are uncontrolled by medication and are triggered by hormonal cycles, even when all other sz a patient can have are being controlled. So, I think making that assessment is a crucial one in whether birth control will be a good option for you. Secondly, most doctors are not aware of this, it involves fighting for it, educating yourself, and being self aware. Know what drugs you can and cannot take, know your birth control plans...its a challenge but very feasible to become sz free! I never thought i would have it with the number of sz and the duration I was having, but the same month I got on bc it just stopped.
Comments
Re: Catamenial Epilepsy: Finally a solution!
Submitted by carped on Wed, 2010-10-06 - 17:15
I am currently 40 years old. My symptoms began right around the time I turned 38. I began having light headed spells, problems with depth perception, speech difficulties and even problems with movement for several days at a time. I resembled a stroke victim. It would occur for 4-5 days and then abate for a week - just long enough for me to hope it was a bad dream and then return the following week. The only diagnosis I could get was conversion disorder - even after a week's stay in a research hospital. I continued to search for the true cause of my problem for a couple of years. Fortunately along the way, I had some tests that led me to a physician that was finally able to diagnose catamanial epilepsy. A Naturopath did some hormone testing and I had a PET scan that showed temporal lobe hypometabolism.
In December 2009, I read a paper on line about natural progesterone treatment for catamenial seizures and went to the health food store and bought a tube of Emerita ProGest cream. Within 15 minutes of rubbing the cream on my skin, my symptoms started abating. It was a miracle! I found a neuroendocrinolgist that was finally able to give me an accurate diagnosis and work with me on hormonal treatments to keep my seizures under control. The first step is to chart them correctly. Had I known this, I would have saved myself lots of time and grief. If the first day of your cycle is Day 1, begin charting your symptoms by this and begin all over again when you get your next period. Catamenial seizures occur when estrogen levels are high. This is usually during ovulation and just prior to menstruation. Charting is critical to determining if hormones play a role in seizures and seeing if there is a pattern to your symptoms.
I also began paying attention to my triggers. I could almost have a panic attack walking into a big box store when I was symptomatic. Turns out, the flourescent lights were causing me to feel weird. Now I wear sunglasses and I don't have any issues. Coffee, low blood sugar, lack of sleep.. it helps to figure out what makes you feel odd and take action to avoid the situations you are able to control. I could feel fine at home and get to a Dr's office and start feeling weird. This would make me second guess my mental state and my opinion that I did NOT have a conversion disorder. Turns out, most physicians have flourescent lights in their offices!
As for treatments, unfortunately, a Mirena IUD did not work for me. ProGest cream works, but I have lots of breakthrough seizures. My neuro prescribed Prometrium. I was taking as much as 1600 mg a day. The side effects were awful. My seizures were reduced but still not under control. Finally, in August of this year, I began getting Lupron Depot shots. I just had my third one. Since the first shot, I have had two seizures. I was having 40-50 every 23 day cycle. The Lupron induces a reversible menopause. It has side effects also, most noticeably lots of hot flashes, but it seems to be working and I feel hopeful that I have a chance at a life again. A few more months with this successfully working and I will opt for a hysterectomy and hopefully be able to put this chapter of my life behind me.
I see young women and I think, "why didn't anyone tell me being a woman could be so difficult? How can a hormone cause me to feel so odd and lose touch with normalcy? How can most physicians have no clue that hormones can cause such extreme symptoms?" Perhaps it is better I didn't know this would be my fate. I am angry that I suffered as long as I did. I saw over 45 physicians in two years and no one was able to give me anything but platitudes, referrals and offers for prescriptions for antidepressants.
I work daily on focusing on the good things that have occurred as a result of my illness. The friends that have extended themselves and the opportunities I have had to be humble and appreciative of small kindnesses. I feel strongly that our plight needs to be more public. It makes me sad to think other women are suffering. I hope this email helps someone else even if it is just the comfort that you are not alone.
I am currently 40 years old. My symptoms began right around the time I turned 38. I began having light headed spells, problems with depth perception, speech difficulties and even problems with movement for several days at a time. I resembled a stroke victim. It would occur for 4-5 days and then abate for a week - just long enough for me to hope it was a bad dream and then return the following week. The only diagnosis I could get was conversion disorder - even after a week's stay in a research hospital. I continued to search for the true cause of my problem for a couple of years. Fortunately along the way, I had some tests that led me to a physician that was finally able to diagnose catamanial epilepsy. A Naturopath did some hormone testing and I had a PET scan that showed temporal lobe hypometabolism.
In December 2009, I read a paper on line about natural progesterone treatment for catamenial seizures and went to the health food store and bought a tube of Emerita ProGest cream. Within 15 minutes of rubbing the cream on my skin, my symptoms started abating. It was a miracle! I found a neuroendocrinolgist that was finally able to give me an accurate diagnosis and work with me on hormonal treatments to keep my seizures under control. The first step is to chart them correctly. Had I known this, I would have saved myself lots of time and grief. If the first day of your cycle is Day 1, begin charting your symptoms by this and begin all over again when you get your next period. Catamenial seizures occur when estrogen levels are high. This is usually during ovulation and just prior to menstruation. Charting is critical to determining if hormones play a role in seizures and seeing if there is a pattern to your symptoms.
I also began paying attention to my triggers. I could almost have a panic attack walking into a big box store when I was symptomatic. Turns out, the flourescent lights were causing me to feel weird. Now I wear sunglasses and I don't have any issues. Coffee, low blood sugar, lack of sleep.. it helps to figure out what makes you feel odd and take action to avoid the situations you are able to control. I could feel fine at home and get to a Dr's office and start feeling weird. This would make me second guess my mental state and my opinion that I did NOT have a conversion disorder. Turns out, most physicians have flourescent lights in their offices!
As for treatments, unfortunately, a Mirena IUD did not work for me. ProGest cream works, but I have lots of breakthrough seizures. My neuro prescribed Prometrium. I was taking as much as 1600 mg a day. The side effects were awful. My seizures were reduced but still not under control. Finally, in August of this year, I began getting Lupron Depot shots. I just had my third one. Since the first shot, I have had two seizures. I was having 40-50 every 23 day cycle. The Lupron induces a reversible menopause. It has side effects also, most noticeably lots of hot flashes, but it seems to be working and I feel hopeful that I have a chance at a life again. A few more months with this successfully working and I will opt for a hysterectomy and hopefully be able to put this chapter of my life behind me.
I see young women and I think, "why didn't anyone tell me being a woman could be so difficult? How can a hormone cause me to feel so odd and lose touch with normalcy? How can most physicians have no clue that hormones can cause such extreme symptoms?" Perhaps it is better I didn't know this would be my fate. I am angry that I suffered as long as I did. I saw over 45 physicians in two years and no one was able to give me anything but platitudes, referrals and offers for prescriptions for antidepressants.
I work daily on focusing on the good things that have occurred as a result of my illness. The friends that have extended themselves and the opportunities I have had to be humble and appreciative of small kindnesses. I feel strongly that our plight needs to be more public. It makes me sad to think other women are suffering. I hope this email helps someone else even if it is just the comfort that you are not alone.
Re: Catamenial Epilepsy: Finally a solution!
Submitted by uberzwitter on Wed, 2010-10-06 - 18:26
You dont necessarily want to undergo something like that if it's not necessary. You need estrogen in your body. Hormones have many functions, and estrogen has properties in cardiovascular and bone health apparently. Inducing early menopause isnt ideal. And with so many options, Im sure something might help you without such a drastic move. I understand the no insurance, I do, but there are services always available. You dont need to suck it up. You just need to do a little research in your area. :) They might be slow, and appointments might take forever, but its better than nothing. Allowing E to go untreated can cause it to progress so you need to get yourself looked at.