This is for those of you out there putting down Epileptogist who are actually Neurologist. They specialise in seizure disorders. I can understand some of you have not had good experience with them. My Neuro.has sent me to a clinic at U of M Hospital because my seizures are way out of controll.For the past 2 years they have been on an average of 1-3 a week which has kept me from working. Then the Depakote I was taking did something to my pancreas so I could not take that any more. I went for my first appt. He was a Neurologist.He put me on Zonogran. Since I have not been on depakote I have been having seizures 2 and 3 times a day . At this clinic the neurologist I saw is quite certain I will need surgery. Which will be done by an Epileptolgist or at least I think so Could you all realize that I am scared and give the DRS. a rest for a while . Mary
Mary in your case if they are suggesting surgery, I would personally want to be evaluated by an EPI FIRST before surgery. Like a second opinion but way better. I was gonna see an EPI, but my E is mild and I have no need for it yet. Thank God. I hope you are feeling a little better today. Tracy
Tracy
Tracy
1000 MG daily Keppra
& 3 other non AED meds
Wishing Joy to the world
((Mary))) It is good you have found neuros you trust in and will work to find you the best asnwers. Epileptologists are a great way for control! Find the best doc for you who listens to you and works with you...
Hoping you find answers SOON.
Hoping you find answers SOON.
Mary,
Yea, you're probably right, the EPI is best for just treating seizure disorder but in a case where there is more than one desease, the NEURO would probably be your best bet cause they would be more familiar with the other prob and how certain drugs would react with each other.
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
I went and seen my PCP today. I am just so scared. He had a little computer that told him exactly what the first dictor told him I seen last week at the Epilepsy Clinic.
That really helped me to see him. I felt all alone until my appt. in March. I have tests sschedule until then. When I called my PCP today they could tell I was stressing out. So they fit me in this afternoon. I feel like there is a game plan now. He will monitor my blood levels. He is a DR. at the Univeristy Hospital I am now going to. I had gone to him for about two years ,years ago so he knows me. I just feel better that he, my husband and I have some what of a plan . Changing your whole health people.I was very worried about the miagraines that I get and had forgot to tell the new Neuro.the PCP took care of that and gave me medications for the pain I have after I have a clustter of seizures. He wrote eveything out for my husband. Also told us when to call the Epileptic Clinic if needed before my appt. Thank You All For Listening ti me. Mary
That really helped me to see him. I felt all alone until my appt. in March. I have tests sschedule until then. When I called my PCP today they could tell I was stressing out. So they fit me in this afternoon. I feel like there is a game plan now. He will monitor my blood levels. He is a DR. at the Univeristy Hospital I am now going to. I had gone to him for about two years ,years ago so he knows me. I just feel better that he, my husband and I have some what of a plan . Changing your whole health people.I was very worried about the miagraines that I get and had forgot to tell the new Neuro.the PCP took care of that and gave me medications for the pain I have after I have a clustter of seizures. He wrote eveything out for my husband. Also told us when to call the Epileptic Clinic if needed before my appt. Thank You All For Listening ti me. Mary
Good Mary
Also call him is the clinic isn't listening please.
DOnna
Also call him is the clinic isn't listening please.
DOnna
Thia is interesting to me, as I am being sent to a specialist also. My neuro. says he really does'nt think meds will work. Until the ins. is approved he is going to keep trying combinations of meds. So please keep me posted as to what happens with you!
lots of hugggggggggggsssssssssssss....................
michelle
Michelle,
I was not happy about changing DRs. at first. But I was having way to many seizures and still am. My NEURO. reffered me to this EPI> Clinic. I had finally gotten medicaid But it messed up all the DRs. I could see and I just did not have it in me to fight the fact that that I have had this NEURO. for 9 years, sometimes they will let you keep seeing the DR. you have been seeing even if it is out of the HMO network. I did not even know medicaid has a HMO. But with seizures getting worse (everyday) And medications not controlling them at all. My old Neuro. thought this was the best thing to do. I have had some med. changes since my get to know you visit. They put me on Zonegran and I went one whole week with no seizure. After 2 weeks it was increased to 2 at night. About 4 days later I noticed that every afternoon I cried for no reason. I could set my watch by it. Then I started having more seisures. They were up to one a day but I have like 3 or 4 at a time. I called the EPI Clinic thinking the would take me off the Zoneagran but they increased it to 1 in the morning too. I am to call them in a week if I have any increase in seizure activity. I've gone almost 36hrs with no seizure. The DR did not think the crying was from the Zonegran. If it is a side affect it should wear off. But to get back on track I dont even know if Medicaid-MCaid would pay for any surgery. It all just seems like a waiting game and taking meds, meds, meds. I figured it out I am taking 4 AED 19 pills a day. That does not count the Diastat I have to stop the Seizures if they dont stop so I dont have to go to the ER So I guess I am happy that at least I will be seeing some one that may kmow just what I need to controll with the least amount of meds. I guess I wrote a book. Thanks for listening. Mary
I was not happy about changing DRs. at first. But I was having way to many seizures and still am. My NEURO. reffered me to this EPI> Clinic. I had finally gotten medicaid But it messed up all the DRs. I could see and I just did not have it in me to fight the fact that that I have had this NEURO. for 9 years, sometimes they will let you keep seeing the DR. you have been seeing even if it is out of the HMO network. I did not even know medicaid has a HMO. But with seizures getting worse (everyday) And medications not controlling them at all. My old Neuro. thought this was the best thing to do. I have had some med. changes since my get to know you visit. They put me on Zonegran and I went one whole week with no seizure. After 2 weeks it was increased to 2 at night. About 4 days later I noticed that every afternoon I cried for no reason. I could set my watch by it. Then I started having more seisures. They were up to one a day but I have like 3 or 4 at a time. I called the EPI Clinic thinking the would take me off the Zoneagran but they increased it to 1 in the morning too. I am to call them in a week if I have any increase in seizure activity. I've gone almost 36hrs with no seizure. The DR did not think the crying was from the Zonegran. If it is a side affect it should wear off. But to get back on track I dont even know if Medicaid-MCaid would pay for any surgery. It all just seems like a waiting game and taking meds, meds, meds. I figured it out I am taking 4 AED 19 pills a day. That does not count the Diastat I have to stop the Seizures if they dont stop so I dont have to go to the ER So I guess I am happy that at least I will be seeing some one that may kmow just what I need to controll with the least amount of meds. I guess I wrote a book. Thanks for listening. Mary
MIchelle, if you are infact drug resistant, you can try alternative methods of treatment. I know afew people from another board who were totally drug resistant after years of med combos. There are natural viatmins and supplements that you can look into taking for your seizures. They say they have had great sucess with this. Also look into the gluten free and casin free diet. Many products with gluten and casin can enduce seizures for an epileptic. There are many things to try alternatively and naturally. Just thought I would raise that aspect of things. Take care hope you are well. Tracy
Hi Mary, From what I understand an epileptologist is required to have two Phd.s. Mine has her's in medicine of course specializing in neurology and intractable epilepsy,and then in neurophsycology. I think one of their specialties is anylizing people for epilepsy surgery. I was reffered to mine two years ago. I had surgery last August. I've had three different neurologists at the teaching hospital I go to. I have only had really bad luck with one. I think he thought I was lieing about seizure and tried taking me off meds. The head neurologist came in and asked him if he even read my chart and saw that I have lesions on my temporal lobe. The next visit I had, he was gone. I've had good luck with the relationship with my epileptologist even if she can't control my seizures. Good luck with what ever you decide to do and you will be in my prayers. Bye. Jeff