Epileptologist and gynecologist

[zman]

Hello, My daughter is looking for a good Epileptologist and a good gynecologist. We live in the Seattle area. She needs someone that understand hormones and can do so puzzle solving. We are pretty sure her hormones are crazy and causing some of her seizures.

Any suggestions would be great!!

 

[jonsey]

hi zman

be prepared for a battle , here in the uk my daughters epilepsy specialist kept dismissing th fact the her hormones where the main trigger . Only after joing ths forum i have a very loud voice now when we have an appointment . Amy is on the depo which she has every 10 weeks , along with 300mg lamactal and 1000mg of keppra added febuary of this year . snce keppra she was seziuring every month when her period was due . The epilepsy nurse as now added a rescue med called clobazam 10mg , this month no seziures , also her gp is thinking along the lines of the merina coil instead of the depo has sh is having break through periods now . good luck to you and your daughter , hope this helps in some way

 

[tinathesingergirl]

Have you checked with any of the doctors at Virgina Mason or at Sweedish Medical Center downtown yet I would suggest you start there if your insurance allows it. I grew up Washington State. I live in Florida now. But all of my family still live there. My parents live in Squimm, I have one sister that lives in West Seattle in fact you have heard her on the radio Angela Kirby she is the voice of Seattle Traffic in the morning, my other sister lives in Gig Harbour, my brother and his wife and his son live in the tri-cities. My sister in-law and her husband live in Tacoma. So I know the Seattle area pretty well. My dad has had some back surguries knee surgies at both Virgina Mason and at Sweedish and both he and my mom seemed very impressed by the care they received at Sweedish especially. In point of fact if I lived there they have said if I lived there they have both said I should seek care there at sweedish. I have no idea if they have a level 4 center there check on this site to see if they have a level 4 center and go from there I would say.

Tina

 

[zman]

hi zman

be prepared for a battle , here in the uk my daughters epilepsy specialist kept dismissing th fact the her hormones where the main trigger . Only after joing ths forum i have a very loud voice now when we have an appointment . Amy is on the depo which she has every 10 weeks , along with 300mg lamactal and 1000mg of keppra added febuary of this year . snce keppra she was seziuring every month when her period was due . The epilepsy nurse as now added a rescue med called clobazam 10mg , this month no seziures , also her gp is thinking along the lines of the merina coil instead of the depo has sh is having break through periods now . good luck to you and your daughter , hope this helps in some way

Thank you! She is 21 years old and had a 2lb brain tumor removed 2 years ago. She never had any seizures until 6 months after the surgery. The hope is they will go away over time as her brain adjust to the changes from the surgery. She is on 600mg of lemictol. This has worked well for a 1 1/2. For the last 4 months or so she will get the shooting feeling in her right arm that usually will lead to a big seizure if not medicated. We know her hormones are crazy. Her periods are hit and miss. She has mood swings,acne and many other symptoms. She was a couple years without a period before they removed the tumor. She then started her period within ours of her surgery.
We are confident that her hormones are out of control and affecting her meds. She went to a gyno and she only checked for progesterone and not estrogen. We just need to find the right doctor here in the Seattle area.

 

[zman]

Have you checked with any of the doctors at Virgina Mason or at Sweedish Medical Center downtown yet I would suggest you start there if your insurance allows it. I grew up Washington State. I live in Florida now. But all of my family still live there. My parents live in Squimm, I have one sister that lives in West Seattle in fact you have heard her on the radio Angela Kirby she is the voice of Seattle Traffic in the morning, my other sister lives in Gig Harbour, my brother and his wife and his son live in the tri-cities. My sister in-law and her husband live in Tacoma. So I know the Seattle area pretty well. My dad has had some back surguries knee surgies at both Virgina Mason and at Sweedish and both he and my mom seemed very impressed by the care they received at Sweedish especially. In point of fact if I lived there they have said if I lived there they have both said I should seek care there at sweedish. I have no idea if they have a level 4 center there check on this site to see if they have a level 4 center and go from there I would say.

Tina

Thanks for your input. That is the track we are on. She has been seeing one the we were told about by her surgeon at Harborview. The problem is he plays down the hormone idea. He just pushes drugs. If we can't find the cause then drugs have to be used. I would like to solve this puzzle. I am sure we will. We just need the doctor that loves what they do and its not about how many patients they see in an hour.

We just need to connect the dots. Thanks everyone for your input!!!

 

[tinathesingergirl]

Zman, I too have seizures that are related to my periods in fact my gran mals are triggered by my periods although I am not officially dx'd with what is referred to as hormonal triggered epilepsy I have found that most neuros do not know enough about this yet.... My GP actually who is an osteopath I had a better time getting through too than my neuro when it came to talking about the hormonal connection with the seizures. This is the Docotr that I have my birthcontrol medication through I am currently on the nuevaring which is a soft removeable ring which i wear for 3 weeks and remove for 1 week for my period. I wanted something that was not permanent in case of hopspital stays/emergincies and since I could not take the pill and I did not want the expense of the shot and the co-pays and the 3 month visit for the shots, and my husband did not want a vasectomy, and I did not want an IUD I did not want something that permanent. This method works well for us. Costs us about $31.00 after insurance on my PPO becasue there is not a generic available but is does not affect my other meds Keppra 1500mgs 2x and Toppamax 200mgs 2x oh and my periods have been regular since i have been on this regiman sine i have been on it about a year now. I used to be fairly off the charts too used to go months at a time in my teens and sometimes in my early 20's without having a period and when i did it was painful very painful. Let me know If I can be anymore assistance to you praying for you all goes well.

Tina

 

[zman]

Zman, I too have seizures that are related to my periods in fact my gran mals are triggered by my periods although I am not officially dx'd with what is referred to as hormonal triggered epilepsy I have found that most neuros do not know enough about this yet.... My GP actually who is an osteopath I had a better time getting through too than my neuro when it came to talking about the hormonal connection with the seizures. This is the Docotr that I have my birthcontrol medication through I am currently on the nuevaring which is a soft removeable ring which i wear for 3 weeks and remove for 1 week for my period. I wanted something that was not permanent in case of hopspital stays/emergincies and since I could not take the pill and I did not want the expense of the shot and the co-pays and the 3 month visit for the shots, and my husband did not want a vasectomy, and I did not want an IUD I did not want something that permanent. This method works well for us. Costs us about $31.00 after insurance on my PPO becasue there is not a generic available but is does not affect my other meds Keppra 1500mgs 2x and Toppamax 200mgs 2x oh and my periods have been regular since i have been on this regiman sine i have been on it about a year now. I used to be fairly off the charts too used to go months at a time in my teens and sometimes in my early 20's without having a period and when i did it was painful very painful. Let me know If I can be anymore assistance to you praying for you all goes well.

Tina

Has the birth control helped with your seizures? This is what we are hoping for however would like to get a hormone test prior to the start of birth control.
Thanks for your input. Info is always helpful!

 

[MaryK]

Hi: Both Harborview which is a Level 1 the best of the best trauma centers which is associated with the University of Washington and Swedish as stated above would be good options.

I also had problems with my periods and seizure activity, especially perimenopausal when my doctor gave me progesterone only. In general birth control pills are not recommended because of their estrogen, which can be a seizure trigger for some.

http://uwmedicine.washington.edu/Pa.../Medical-Services/Epilepsy/Pages/default.aspx

http://pcs.hmc.washington.edu/epilepsy/

http://www.swedish.org/Services/Neuroscience-Institute/Neuroscience-Services/Epilepsy#axzz1xRl2L4w3

http://professionals.epilepsy.com/wi/print_section.php?section=hormones_catamenial

 

[zman]

Thank you for all the info!

 

[tinathesingergirl]

Zman- it has helped me in the first month or so when I was adjusting to to it I think I had 1 seizure and it was like a blip compared to what I have normally from what my husband tells me. Fast Gran Mal and very short post- ictal period for me which usually is a sleep period of around 5-6 hours this time was 2 hours. So yes this was a vast improvement. I would say. I have not had any incidents since January 31st. This is the longest I have been seizure free and out of hospital in 4 years without a med adjust before that i was having a med adjust about every 3-4 months. On average I have been in hospital about 2-3x a year becasue of status every time my mri/,ct scans,EEG's, all come back all clean so we are having to figure this out ourselves. I have just started taking basal body temperture readings also last month since i am planning to go to either the docotrs in Tampa or to Mayo in Jacksonville since the doctors here in Orlando don't seem to see the hormonal connection. this might be something that might be something that the gynocolgist might be willing to pay attention to if you start charting with your daughter its real easy you just take her temperature or she could do it when she wakes up in the morning (if she can) chart it. You start it on her first day of her period ....but since her cycle is so crazy ...I would say just start it now go to CVS, walgreens, walmart, pick one up cost you abou $10 or $12 go on the internet and start reading up on this method. Most of the stuff is on pregnancy but its all about hormones and thats what its all about right? I would say if you take the time to chart it the doctor might be more willing to pay more atttention to it and run the appropriate tests. empirical data does not lie.

Tina

 

[Nakamova]

Hi zman --

You might be interested in the following article. And perhaps refer to it any discussions with your daughter's neuro/gyno if they need to get up to speed with catamenial epilepsy: http://www.internalmedicinenews.com...lls-some-intractable-catamenial-seizures.html