My doctor called me her "complicated patient"..

Posted by crsty40 @crstyday40, Mon, Jan 28 12:30pm

So I went to my neurology appt this past Friday and tell her i been having seizures almost everyday some days 4 to 6. There was an intern following her around and she told her that "I was her complicated patient!" Gee thanks, that made me feel great! NOT!!! Im doing the medical marijuana and friday she increased my Lyrica from 100mg to 150mg and im also on Briviact and Onfi. Have been on and tried everything!!! I was there to get Botox injections for my migraines so we couldnt talk about everything, have to make another appointment for that ,but i dont know how I can keep having these every day and be "okay". Im taking Briviact and Onfi as well have a VNS at the highest settings and had my right temperol lobe removed. Was told I have an abnormality on my hippocampus but I think they said it cant be removed. I feel so alone with this. I forgot to mention I been having complex partials and absence seizures, I use to have the gran mal seizures but once they removed the abnormality I havent had one since. Im 40 yrs old but definitely dont feel 40 more like 80! My memory is so bad, im so scared its just going to get worse with each seizure. I dont think my doctor knows what else to do with me. My husband just says I should be thankful I dont have the "bad ones" anymore and I am thankful, the ones im having now are just scary and trying not to lose hope but its so hard when nothing is working or helping. Is anybody going through anything like me or similar? I love to crochet and its been therapy for me, but now im having them while im crocheting. Feeling very depressed and anxious ALOT!! The medical marijuana does help with the anxiety and sleep, thats about it! Sorry its so long, didnt know where else to go to…thank you guys in advance for any helpful tips, info anything!

Liked by Leonard

@crstyday40
Hi Crystal,
Jeez, talk about a problem patient you take the cake. What are we going to do with you?
Well first and I think we talked about it before, but have you ever called or checked out the RNS (Responsive Neurostimulation System?) Do you live in California by chance? Here is the phone number to Neuropace 866-727-3876.
Not sure if the VNS would have to go or not. This system works by placing electrodes right at the seizure focus. I’m not excited about the seizure control in the first 6 months (30%) but they improve over the long term (72%)
As far as the Absences are concerned, have you tried Phenobarbital? It knocked mine immediately. I know it may not work for you though but it is the most widely prescribed AED in the world. I think those Focal Impaired are horrible. I didn’t have many but I always went walking when I had them, very dangerous.
Wishing you the best,
Jake

Liked by crsty40

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@jakedduck1 I live in Florida. I brought up the RNS to my husband and he is totally against it, doesnt even want me using my magnet for my VNS when i have seizures because "it dont do anything" but i like to use it whether it does or doesnt because it just gives me some kind of wishful thinking and wishful hoping that its helping a little. As far as me trying the phenobarbital, it sounds familiar but i really dont know?? I will have to ask my doc about it for sure!! And thank you so much for commenting! I really do appreciate it!!

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Hi, @crstyday40 and @jakedduck1 – I thought I'd also bring into this conversation @ckeys @davidinvegas @mmas @michele0161 @dawn_giacabazi @aroman @mythreeguys, who may have some input on dealing with complex partial and absence seizures, as well as the migraines. I'm guessing some of these members can relate to what you've shared about feeling alone in what you are facing medically, having your doctor call you her "complicated patient" and feeling like you are trying not to lose hope. Trusting they will have some tips and advice from their own experiences.

You mentioned you don't feel your doctor knows what else to do with you. Are you considering another opinion from a different M.D.? Do you have a friend or relative who is walking through this with you, @crstyday40?

Liked by Leonard, crsty40

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@lisalucier

Hi, @crstyday40 and @jakedduck1 – I thought I'd also bring into this conversation @ckeys @davidinvegas @mmas @michele0161 @dawn_giacabazi @aroman @mythreeguys, who may have some input on dealing with complex partial and absence seizures, as well as the migraines. I'm guessing some of these members can relate to what you've shared about feeling alone in what you are facing medically, having your doctor call you her "complicated patient" and feeling like you are trying not to lose hope. Trusting they will have some tips and advice from their own experiences.

You mentioned you don't feel your doctor knows what else to do with you. Are you considering another opinion from a different M.D.? Do you have a friend or relative who is walking through this with you, @crstyday40?

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@crstyday40
Have you considered going to see an Epileptologist? I hope you give that some serious thought. Do you know if there is a level 4 Epilepsy Center near you. Here is the National Association of Epilepsy Centers to help you locate one if your interested https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/all-epilepsy-center-locations/

I’m probably out of line here but
You state your husband is against VNS, I’m not a big fan of it either. I know the creator of the VNS Message Board and respect her greatly for her pursuit of the truth. She uncovered things the manufacturer was hiding. Regardless, I’ve known of many people that it has helped and vice versa. I don’t claim to be knowledgeable about the RNS. I’m not thrilled with the success rate in the beginning, their 7 year numbers are equivalent to the success rate of AEDs.
I believe healthcare decisions should be a matter of personal choice. Your husband is not the one directly going through the agonizing effects of the seizures and I don’t think anyone can except the one who experiences them. It’s no walk in the park for him either. I guess your husband is just trying to protect you. I know how awful these seizures can be and the devastation they can cause. How I wish I didn’t. If I were you I’d go to another Neuro for their opinion. I’ve been to so many I’ve lost count. I hope someone is able to get your seizures under control or at least slowed down.
Best of luck,
Jake

Liked by crsty40

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Thank you both so much for your responses. Ive only seen an epilitolgist once and that was in Gainesville at Shands to do all the tests they want you to do before they did my brain surgery. And that was in 2011. I dont know that I even can see a different neuro because I have medicaid. And so I feel like I have to see her since she is the only one that accepts my insurance. And my husband remembers the Doc in Gainesville saying that she's not a big fan of the VNS because it only helps about 3% of patients. So he's always telling me that. But, besides him being here with me all the time and having to remind me of everything and being my caretaker, I do have my mom! She takes me to all my appointments and tries to help me as much as she can. Her thing is..she thinks im having them because I dont go to church. So everytime she asks how im doing and i tell her well i had 3 seizures today 2 yesterday..i feel like shes thinking well if u would just go to church you wouldnt have them anymore. Im a good person and care and think about and help others. I crochet mats out of paper bags for the homeless people and would help anybody. I dont feel like i have to go to church every sunday and wednesday to have God in my life. I pray. Anyways, I dont have any friends that I hang out with. I stay at home all day everyday, my kids are here sometimes when i have the seizures and even my son who is 13 tells me not to use my magnet but they all try and help me. Im sorry if i keep rambling on, just trying to give you guys a picture of my life i guess. So i guess Incould ask my neuro to refer me to an epitilolgist? Wouldnt hurt to ask! Thank you so much for the info you guys have posted!!

Liked by Lisa Lucier, Leonard

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