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Hello, totally new to this
Sun, 12/01/2013 - 21:00Hello I am new to this. I was diagnosed a few weeks ago after EEG showed pattern the neuro said was specific to epilepsy. I also had MRI and blood work. I was a little shocked as I had been thinking I might be having some kind of aura migraine--or worse a brain tumor-my dad had one. Anyhow, I guess my thought was this is a relief--that there is actually something on the test that is consistent with my symptoms and there are treatments. I am using lamotrigine? or is it lamictal--maybe that is the same? I could go look at the bottle--but seems not too important at the moment. I was pretty shocked as I said--i didn't even know people my age (almost 55) got this--but then again, neuro thinks I may have had it a long time. My seizures have mainly been nocturnal with some warnings signs for a cuple days before hand and then I wake up to loud ear ringing; possibly a visual aura and then I just feel numbness from my face on down my body and back up, somewhat random actually. There is usually also some twitching or mild jerking. I'm not really sure if it is getting worse or bettr right now. I have these maybe 2x a week and sometimes they seem to last a long time--but I am now realizing that it isn't so much they last a long time as that they repeat--as in one stops and another one comes a little bit later. Some nights I have several.So far I am not sure if the RX is working, I am not taking a lot yet, I increase it each week and see the Neuro again the 16th.
I really did not know much of anything about this all, so I'm trying to learn all I can. I have other issues, one of which is that I have had fibromyalgia for about 30 years. I also have asthma, allergies, high blood pressure & arthritis. So this just makes for one more challenge. I'm kind of used to having some kind of issue every day.
The best I can recall these began about a year and a half ago. I told several doctors before I was finally sent to a neuro who dx'd the epilepsy. I had one tell me to exercise, one told me I had anxiety. ( I dumped him then cuz he didn't listen at all, and I felt a bit offended when i'd get a print out of my visit and there was the word 'stress' as my diagnosis. Finally I got a primary dr who could listen and she sent me to neuro righ away and so now after the tests I know what it is. I am told that the type of seizures I am having now may not always be the kind I have in the future. So I guess I felt I should learn more about this thing and the various types of seizures/treatments etc to be prepared. Anyhow that's my story. :)
Comments
Re: Hello, totally new to this
Submitted by cwren58 on Mon, 2013-12-02 - 12:42
thanks Joe-- actually I was a big time daydreamer in school too. My neice's little girl just was dx'd with absence seizures and I am thinking I bet I"ve had those and just didn't know it. Anyhow.. I did get a diary yesterday and began to do it. I was thinking I would get a seizure last night becuase I had the 'warning' which for me is loud head buzzing or ear ringing (what my old pcp called 'stress' ) I also feel this sort of dig type thing on my head that moves around-- I think I heard the term ice pick-- and that kind of fits though it is not super painful just weird. So sure enough I had a seizure sometime around 3 or 4 am.
I didn't even think of adding my other meds to the diary--great tip.
My drs don't seem to communicate--which bugs me as one just RX'd a new drug after my recent blood work and now I need to check it out with the other one and tell both of them things.
Neuro seems good, I guess I'll be seeing her fairly regular while working on getting this under control. She insists I bring every single med bottle with me to each appointment--not a list--the actual bottles. I like that--it makes me think she's serious about her work. She also takes time with me which is great.
I have a ton of questions for her now--at first I was just absorbing the diagnosis now I want to know more about it.
She told me she thinks the seizure med will help with some of the fibromyalgia symptoms--that would be great. well anyhow thanks for replying.
Mary
thanks Joe-- actually I was a big time daydreamer in school too. My neice's little girl just was dx'd with absence seizures and I am thinking I bet I"ve had those and just didn't know it. Anyhow.. I did get a diary yesterday and began to do it. I was thinking I would get a seizure last night becuase I had the 'warning' which for me is loud head buzzing or ear ringing (what my old pcp called 'stress' ) I also feel this sort of dig type thing on my head that moves around-- I think I heard the term ice pick-- and that kind of fits though it is not super painful just weird. So sure enough I had a seizure sometime around 3 or 4 am.
I didn't even think of adding my other meds to the diary--great tip.
My drs don't seem to communicate--which bugs me as one just RX'd a new drug after my recent blood work and now I need to check it out with the other one and tell both of them things.
Neuro seems good, I guess I'll be seeing her fairly regular while working on getting this under control. She insists I bring every single med bottle with me to each appointment--not a list--the actual bottles. I like that--it makes me think she's serious about her work. She also takes time with me which is great.
I have a ton of questions for her now--at first I was just absorbing the diagnosis now I want to know more about it.
She told me she thinks the seizure med will help with some of the fibromyalgia symptoms--that would be great. well anyhow thanks for replying.
Mary
Re: Hello, totally new to this
Submitted by just_joe on Mon, 2013-12-02 - 14:27
I think you got a good neuro especially if she wants to see your medications. Using the diary should stop that because they are in the diary. Put anythng you use in it. Oh and there is a way for your neuro to bring it up. I think yu can give her access and they can view the graphs and other things in it. She will be able to see all your meds and she would have more options. As for stress. Yup that can be a trigger with some people. I have another trigger which is getting to hot to fast. My neurologist also wanted to see my meds but now he doesn't because I have been in drug studies for new medications.
You might be surprised to know that many seizure medications have been used for many other ailments. Especially if the ailments stem from the central nervious system. Fibromyalgia being one and they have been used for Az too and many others.
I had to battle to get my doctors to communicate with each other consideringthey are with 2 different hospitals. Oh and they both know I will not be leaving them sooooooooooo at times they will call each other or I will carry the information drom one doc to the other. But I have the best doctors working on me than I have ever had. My neurologist is in the same group that I have been with since 1970, One retires and I get the next who specialized in Az so I got the next who moved and I got the next who retired and I got the next. I think Doc is the 6th or 7th different neuro and he was looking at my files answering questions when he first cam in
Hope things go good
Joe
I think you got a good neuro especially if she wants to see your medications. Using the diary should stop that because they are in the diary. Put anythng you use in it. Oh and there is a way for your neuro to bring it up. I think yu can give her access and they can view the graphs and other things in it. She will be able to see all your meds and she would have more options. As for stress. Yup that can be a trigger with some people. I have another trigger which is getting to hot to fast. My neurologist also wanted to see my meds but now he doesn't because I have been in drug studies for new medications.
You might be surprised to know that many seizure medications have been used for many other ailments. Especially if the ailments stem from the central nervious system. Fibromyalgia being one and they have been used for Az too and many others.
I had to battle to get my doctors to communicate with each other consideringthey are with 2 different hospitals. Oh and they both know I will not be leaving them sooooooooooo at times they will call each other or I will carry the information drom one doc to the other. But I have the best doctors working on me than I have ever had. My neurologist is in the same group that I have been with since 1970, One retires and I get the next who specialized in Az so I got the next who moved and I got the next who retired and I got the next. I think Doc is the 6th or 7th different neuro and he was looking at my files answering questions when he first cam in
Hope things go good
Joe
Re: Hello, totally new to this
Submitted by just_joe on Mon, 2013-12-02 - 10:24
Welcome
This is deffinately going to be different. The first thing I would suggest you do is get the diary located at the top of this page. Watch the video and use the diary. The neurologist can use the information in it to come up with different procedures, medications and triggers. Also in the diary you can put your other medications for your other issues and that too will help. You do not want medications interacting with each other. Consider that anything you take has side effects and one medication can counter what another medication is supposed to do.
The medication you posted are one and the same one is generic the other is the original. People of any age can have epilepsy. I was 12 when I started having seizures. I thought the auras were just wierd feeling and since I was a growing boy I said nothing about them. I was written up for day dreaming in class but those day dreams were absence or partial seizures.
The doctor told you right one type of seizure can happen but you may have different types of seizures. I was diagnosed before they came up with types. Grand mal, Pettite mal and focal motor epilepsy is what I was diagnosed with and if you actually look at all the types of seizures those will bring up there are many.
Use the diary and also do yourself a favor and get a good relationship between you and your neurologist. Having one of those does help because at times you may need some changes done and if that relationship is there it can be done over the phone. DOsage increases medication coupling and just questions about possiable side effects to medications. But do tell him about your other issues and all the medications you take. Hopefully your PCP and your neurologist are in the same network so they can send information to each other because that too can help.
I hope this helps and do come back if you have questions. We want to help and can answer some questions. However we are not doctors. Many of us are the ones with epilepsy others are Mom's and Dad's of kids with epilepsy.
Joe
Welcome
This is deffinately going to be different. The first thing I would suggest you do is get the diary located at the top of this page. Watch the video and use the diary. The neurologist can use the information in it to come up with different procedures, medications and triggers. Also in the diary you can put your other medications for your other issues and that too will help. You do not want medications interacting with each other. Consider that anything you take has side effects and one medication can counter what another medication is supposed to do.
The medication you posted are one and the same one is generic the other is the original. People of any age can have epilepsy. I was 12 when I started having seizures. I thought the auras were just wierd feeling and since I was a growing boy I said nothing about them. I was written up for day dreaming in class but those day dreams were absence or partial seizures.
The doctor told you right one type of seizure can happen but you may have different types of seizures. I was diagnosed before they came up with types. Grand mal, Pettite mal and focal motor epilepsy is what I was diagnosed with and if you actually look at all the types of seizures those will bring up there are many.
Use the diary and also do yourself a favor and get a good relationship between you and your neurologist. Having one of those does help because at times you may need some changes done and if that relationship is there it can be done over the phone. DOsage increases medication coupling and just questions about possiable side effects to medications. But do tell him about your other issues and all the medications you take. Hopefully your PCP and your neurologist are in the same network so they can send information to each other because that too can help.
I hope this helps and do come back if you have questions. We want to help and can answer some questions. However we are not doctors. Many of us are the ones with epilepsy others are Mom's and Dad's of kids with epilepsy.
Joe