I'm 38 and I had my first big seizure last month went to ER for test CAT MRI and blood work was admitted, but left because I had a terrible headache and couldn't wait any longer for a hospital room to open up. But followed up with a neruo a couple days later. He explained to me that I had "Epilepsy" and he went over the list of Don'ts and said that the seizure started from migraine (I don't remember a headache that day) then had a TIA(had couple before but nothing like this) then partial seizure with secondary generalized seizure. He put me on Topamax 1 1X am 1st week. week 2 1in am 1 in pm. week 3 supposed to do 1 am 2 pm, but couldn't stand side effects anymore (headaches start of the day, pin needles hands feet face, cant think or talk right, noises and smells bother me ( or do I smell) brushing teeth 3 times before work 2times during day. don't like diet coke anymore foods bother me lost 8 pounds.Called Dr. didn't want to increase because of side effects made appt for follow up. Had brief twitching scare but was aware called and took increase 2 in pm 1 in am. At appt Doc said video EEG was normal offered me depression meds and different AED. I asked him to please go over the hospital results with me again and he said all it says that I had was a "Sinus infection"!!! So I asked him then if I can go off this medicine its making me sick he said "ok go down 1 pill a week" and chances will be 50/50 I'll have another seizure. I don't mind any chances, I really feel like this has poisoned me especially my mind. I'm having a hard time remembering if I told my kids to do something or just thought about saying it. Any advice?
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Opaltopal, welcome to CWE. This is a great group/community to learn as much as you want about "E". I am 38 and diagnosed this past summer with "E". This group has helped me so much since October. I hope you find all the answers to your questions on this group as this group is a wealth of knowledge. Good luck!
alivenwell
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Wow...
Welcome to CWE!
So many factors can lead to a nasty headache. Diet alone can make things drastically much better. It's possible you are gluten sensitive. A high blood pressure or low sugar level can also lead to a bad headache. Some people claim some vitamins help one's ability to manage migraines.
Do you pre-count meds everyday?
A mini-stroke is something that would be a pretty serious issue. Diet alone, weight loss, quitting smoking (not that you do), no more alcohol and stress management all help.
After I got a dish washer, my sinus infections practically disappeared. It may be a worthwhile investment.
Welcome to CWE!
So many factors can lead to a nasty headache. Diet alone can make things drastically much better. It's possible you are gluten sensitive. A high blood pressure or low sugar level can also lead to a bad headache. Some people claim some vitamins help one's ability to manage migraines.
Do you pre-count meds everyday?
A mini-stroke is something that would be a pretty serious issue. Diet alone, weight loss, quitting smoking (not that you do), no more alcohol and stress management all help.
After I got a dish washer, my sinus infections practically disappeared. It may be a worthwhile investment.
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Endless
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OpalTopal,
Welcome to the forum!
I agree with Alivenwell. Lots of factors to consider.
I'm having a hard time understanding how your doc thinks the migraine caused your seizure, when you had a TIA? I'd think it's more likely the TIA caused the migraine and the seizure. But then, I'm not a doctor.
I'm also having a hard time undertanding how he could say you had a TIA, and he is not aggressively treating it so you don't have more. Did he at least prescribe aspirin therapy?
It kind of sounds like a second opinion from a different neurologist might be helpful.
Did you have any seizures while you were in the hospital getting the video EEG? The EEG might still be normal if the seizures are happening too deep in the brain for the electrodes to pick up.
About Topamax. I went off of it because it made me depressed. But while I was on it I was incredibly dopey. Couldn't think, memory issues, slept all the time. There's a reason it has the nickname of "Dopamax." It also left the nastiest taste in my mouth. And took away my apetite. Also made food taste like metal.
Do think about that second opinion from either a general neurologist or an epi (seizure specialist). It may help clear some things up.
Welcome to the forum!
I agree with Alivenwell. Lots of factors to consider.
I'm having a hard time understanding how your doc thinks the migraine caused your seizure, when you had a TIA? I'd think it's more likely the TIA caused the migraine and the seizure. But then, I'm not a doctor.
I'm also having a hard time undertanding how he could say you had a TIA, and he is not aggressively treating it so you don't have more. Did he at least prescribe aspirin therapy?
It kind of sounds like a second opinion from a different neurologist might be helpful.
Did you have any seizures while you were in the hospital getting the video EEG? The EEG might still be normal if the seizures are happening too deep in the brain for the electrodes to pick up.
About Topamax. I went off of it because it made me depressed. But while I was on it I was incredibly dopey. Couldn't think, memory issues, slept all the time. There's a reason it has the nickname of "Dopamax." It also left the nastiest taste in my mouth. And took away my apetite. Also made food taste like metal.
Do think about that second opinion from either a general neurologist or an epi (seizure specialist). It may help clear some things up.
Thanks for the Great Tips
No aspirin therapy suggested. He just seemed to want to push the AED's. Last weeks visit is still bothering me, my mom (aka taxi mom) came back in the room with me and when I asked if he can review it again (with her here) he said "sinus infection". Now it feels like I'm either lying or going crazy, she sent her friend over to check on me tonight who said "Do you think you are having a nervous breakdown?" I will try to get a copy of his reports and see another neuro
No aspirin therapy suggested. He just seemed to want to push the AED's. Last weeks visit is still bothering me, my mom (aka taxi mom) came back in the room with me and when I asked if he can review it again (with her here) he said "sinus infection". Now it feels like I'm either lying or going crazy, she sent her friend over to check on me tonight who said "Do you think you are having a nervous breakdown?" I will try to get a copy of his reports and see another neuro
Endless
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That's the way to think! Stay strong, and chase that 2nd opinion. Get a 3rd if you have to.
If it were me I'd ignore the friends and family's ignorant comments until you have some answers. They are not being helpful, here. They are sucking your energy instead of shoring you up.
If it turns out to be seizures, something needs to be done about that first doc. What country do you live in???
p.s. If he is pushing the AED's, then he does think it's seizures, not a sinus infection. Otherwise, why prescribe the AED's? What is he thinking saying it's a sinus infection?! Definitely look at your doctor's chart notes.
If it were me I'd ignore the friends and family's ignorant comments until you have some answers. They are not being helpful, here. They are sucking your energy instead of shoring you up.
If it turns out to be seizures, something needs to be done about that first doc. What country do you live in???
p.s. If he is pushing the AED's, then he does think it's seizures, not a sinus infection. Otherwise, why prescribe the AED's? What is he thinking saying it's a sinus infection?! Definitely look at your doctor's chart notes.
ColmanMac
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Hi opaltopal & good to meet you - like others here I'm having difficulty getting my head round your Docs reasonings- however the cynic in me feels you'll get just as much joy on this site than from him- after all, unless your Doc is E, he's not really an expert in the problem is he?! - Take care & shout if you need anything - Col.
RobinN
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If you do have a sinus infection, I would use that as a "dot" to connect to other "dots". It is common when the GI system is out of sorts to have neurological issues. It is nutritional choices that play a role in the health of your GI system. The term gut-feeling didn't just come from no where.
Sinus infection is a fungal overgrowth. Many reasons for this, but looking forward it is necessary to work to clear it up. You might need an antibiotic, but you will also need to after that deal with your nutritional choices and introduce a good probiotic.
Seizures can occur when the health of your GI system and your liver (and other organs) are not working properly. A sinus infection is only one symptom, seizures are another symptom.
Epilepsy is only a label for two or more seizures. You are 38 years old with no prior medical reason to have seizures. We all have a seizure threshold. Yours was lowered for some reason.
Sinus infection is a fungal overgrowth. Many reasons for this, but looking forward it is necessary to work to clear it up. You might need an antibiotic, but you will also need to after that deal with your nutritional choices and introduce a good probiotic.
Seizures can occur when the health of your GI system and your liver (and other organs) are not working properly. A sinus infection is only one symptom, seizures are another symptom.
Epilepsy is only a label for two or more seizures. You are 38 years old with no prior medical reason to have seizures. We all have a seizure threshold. Yours was lowered for some reason.
No more topamax
I want to thank everyone for there help. I'm very lucky to have a loving sister who was concerned enough to make surprise visit and dr appt for me. She drove3 hours to come see me. Family doc said topamax giving me bad side effects he would rather me chance having a seizure then be on it. He was going to call near dr to get his reports. I lost 13 pounds in 1 month, he promises I will start talking and feeling normal again. He will refer me to another dic if he has too but he wont let me feel this bad again. I am very releived to know he will get it all figured out.
I want to thank everyone for there help. I'm very lucky to have a loving sister who was concerned enough to make surprise visit and dr appt for me. She drove3 hours to come see me. Family doc said topamax giving me bad side effects he would rather me chance having a seizure then be on it. He was going to call near dr to get his reports. I lost 13 pounds in 1 month, he promises I will start talking and feeling normal again. He will refer me to another dic if he has too but he wont let me feel this bad again. I am very releived to know he will get it all figured out.
Hello and welcome. That is pretty disconcerting that the doctor thought you had a TIA and is not treating you for it...please follow up and get some treatment for this. I also take Topamax, and the first couple weeks on it were very rough--lost my appetite altogether, could not think (still don't think as well as I used to), made me sleep 14 hours a night (still want to sleep 12 hours a night) and yes, I dropped 22 pounds on it that I didn't need to lose.
The doctor is most likely keeping you on the Topamax as insurance in case you do have another seizure, and also because withdrawing from Topamax suddenly is not a good idea from what I have read.
Definitely get a second opinion at this point...especially if the doctor can't decide if it was a sinus infection, TIA, seizure, or migraine!!!
The doctor is most likely keeping you on the Topamax as insurance in case you do have another seizure, and also because withdrawing from Topamax suddenly is not a good idea from what I have read.
Definitely get a second opinion at this point...especially if the doctor can't decide if it was a sinus infection, TIA, seizure, or migraine!!!