been ok but now getting worse again

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thornton8000

thornton8000

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so ive been off the topamax for quite a few months now and only on keppra for my seizures.

In the last few months ive noticed that my seizures are starting to get more frequent and my night seizures are getting worse, to the point of every morning i wake up i have the feeling of being hit by a truck, migraine that nothing takes away and total pain (different that my regular pain)

thought id keep everyone updated, since its been awhile since ive been on here, and things are taking a downward spiral and its not been a fun ride

mike
 
Are to going to call or see your Dr. with all this happening?

I hope you get to feeling better.
 
jyearta: He doesnt want to see me again till i finish the therapy sessions which thankfully is only one more, and then after a neuro/pysch test mid jan of 2013 that will last 4-6 hours and since they cannot find any reason for any of my issues seizures, and others he says nothing is wrong and thinks im faking it (as though I'd wish my issues on anyone or want to fake pain and having issues upon waking almost everyday)
so if i can get the money I have a friend in NY city that will put me up and find me a real MRI machine thats stronger than the ones they have here in MN so they can do a much better brain MRI with and without contrast, but will be calling them soon to see what he thinks i should do, and hope he'll do something.

Mike
 
Its awful when neurologists tthink your making it up just cause they Cant find a cause ... Ive been put on epilim which is working thankfullyy but they are still saying to me that they are psychogenic/pseudo seizures :/

I hope you find some answers soon Mike and start getting your like back on track

We have all had ups and downs this year...so here's to a great new year
Hopefully 2013 will be a new year a new start and we all get the help we need
 
Thanks jayde-101, they think they are PNES also even tho the keppra has been working i think i just need have it adjusted to a higher dose than im on, and maybe a added on extra med to make things calm down again.

im hopinh 2013 is alot better than this last yr was

mike
 
Yea same ... They always say the non epileptic seizures wont stop on anti epilpsy drugs but if they do stop while on anti epilepsy drugs then it gets complicated ....

Maybe you do just need the keppra tweaking what dose are you on ?

Jade x
 
2000mg daily plus some depression meds that i take on a very rare occasion since they mostly lower the threshold for seizures.

mike
 
I used to be on sertraline 100mg (lustral) and man my seizures were bad then Thats a anti depression drug but my psych took me off them and was annoyed that the Dr had put me on them ...

Still that keppra dose is quite high isn't it ..

But a little tweak might do the world of difference. .. How long you been fighting for diagnosis now ?

Jade x
 
thornton8000 said:
jyearta: He doesnt want to see me again till i finish the therapy sessions which thankfully is only one more, and then after a neuro/pysch test mid jan of 2013 that will last 4-6 hours and since they cannot find any reason for any of my issues seizures, and others he says nothing is wrong and thinks im faking it (as though I'd wish my issues on anyone or want to fake pain and having issues upon waking almost everyday)
so if i can get the money I have a friend in NY city that will put me up and find me a real MRI machine thats stronger than the ones they have here in MN so they can do a much better brain MRI with and without contrast, but will be calling them soon to see what he thinks i should do, and hope he'll do something.

Mike
Click to expand...

I know there is a differ. in the MRI machine/equipment. I had Many MRI at all diff. locations, they ALL came back normal, until I went to a teaching hosp. Emory, in Atlanta. It finally showed where my seizures came from.

I never had a Dr. tell me he thought I was faking.

I read this on several post, and for the life of me, who would want to fake it and take the meds. we have to.

I'm praying you will get a call and get a Dr. that will listen to you.
 
Thank you jyearta, i agree with that who would want to fake this and other medical issues, and when ive asked about stronger MRI machiens they techs look at me like im stupid when i know there are stronger machines than we have here in MN so im trying to find a new place with a better machine.

mike
 
yup mary my plan is to find another one thats stronger than the ones ive had in the past, and for the best one out there i have to try and find the money to fly out to new york which would cost alot of money we dont have right now lol

mike
 
Im on 3000mgs of keppra xr a day, and its the only anti seizure medication Im taking. If I go down just alittle bit, I can tell a big difference. Seizure symptoms start to come on immediately. I hope you can hold on til your therapy sessions are over and you can see your neuro then! Hang in there!
 
thank you kristen! you were one of the ppl i was thinking of at 3000mgs a day lol Im hoping things dont get worse before i can see him and the therapy sessions, either stay the same or get less than they are now.

Mike
 
I felt pretty blah on keppra for awhile, but it all ended up being pretty decent as time went by. Some times the doses do have to be altered. I hope you start feeling better more then anything. If they think your faking it, know their opinion at this point doesn't matter. If they aren't getting you answers and alleviating the pain then bide your time until someone good helps. I hope that is asap for you and you aren't alone!

Stronger MRI's do exists, and they make a huge difference. A 7 layer MRI is rarely used I think, and they are more accurate. Spec scans are a good thing to have done. Sometimes the smallest detail that is missed can mean all the difference.
 
agree MuayThaiFightersometimes the smallest detail can make a huge difference so right now im just biding my time until i can find better machines the therapy doc he sent me to also wonders why he isnt treating me for another issue even tho the test say no but my symptons say yes all the way

mike
 
When YOU DO get a good MRI that shows the information, ASK for a copy. I have a copy on a disk and I take to any new Dr. I go to.
 
i hear ya i have a copy of every mri and ct scan ever done on me from brain to back lol but good to remind me my memory has been going again lol

mike
 
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