JB_Texas
08-27-2003, 11:40 AM
Help!!
I was just taken off of Tegretol yesterday & told to start taking Carbatrol, but my insurance doesn't want to pay the full co-pay for that one. Now my Dr. is going to trying to figure out what to put me on in the place of the Tegretol. Apparently Tegretol is getting hard to find by pharmacists. Are any of u coming across that problem ?
I also take Neurontin & Topomax, just need some ideas & this way I can throw them at my Dr.
Thanks,
JB :)
I was just taken off of Tegretol yesterday & told to start taking Carbatrol, but my insurance doesn't want to pay the full co-pay for that one. Now my Dr. is going to trying to figure out what to put me on in the place of the Tegretol. Apparently Tegretol is getting hard to find by pharmacists. Are any of u coming across that problem ?
I also take Neurontin & Topomax, just need some ideas & this way I can throw them at my Dr.
Thanks,
JB :)
Sponsor
KittyMom
08-27-2003, 12:37 PM
JB,
How are you doing dear?? Still having seizures?? What kind are you having??
The reason I ask is because whatever type you are having determins what you need to take. I am having the same problem. My doc wants to put me on Dilantin or Zonegram(sp?) but they have terrible side effects. He is also wanting me to consider the VNS. I am on Neurontin 2400mg. per day. It isn't doing anything but controling the gran mals I didn't know I had.
Let me know what type of seizures you are having and I will let you know what I find in my research for my own meds. OK??
God Bless you and lots of love,
KittyMom
How are you doing dear?? Still having seizures?? What kind are you having??
The reason I ask is because whatever type you are having determins what you need to take. I am having the same problem. My doc wants to put me on Dilantin or Zonegram(sp?) but they have terrible side effects. He is also wanting me to consider the VNS. I am on Neurontin 2400mg. per day. It isn't doing anything but controling the gran mals I didn't know I had.
Let me know what type of seizures you are having and I will let you know what I find in my research for my own meds. OK??
God Bless you and lots of love,
KittyMom
JB_Texas
08-27-2003, 01:04 PM
Kitty Mom,
I have the Petit Mal in my sleep. I take Neurontin, which must really control the Gran Mals, I haven't had one of those in 16yrs.
Thanks for your help & Everywhere I have called they suggest Carbatrol, but I just can't afford that :(
JB :)
I have the Petit Mal in my sleep. I take Neurontin, which must really control the Gran Mals, I haven't had one of those in 16yrs.
Thanks for your help & Everywhere I have called they suggest Carbatrol, but I just can't afford that :(
JB :)
Josephine
08-29-2003, 11:34 PM
Originally posted by JB_Texas:
Help!!
I was just taken off of Tegretol yesterday & told to start taking Carbatrol, but my insurance doesn't want to pay the full co-pay for that one. Now my Dr. is going to trying to figure out what to put me on in the place of the Tegretol. Apparently Tegretol is getting hard to find by pharmacists. Are any of u coming across that problem ?
I also take Neurontin & Topomax, just need some ideas & this way I can throw them at my Dr.
Thanks,
JB :)
Hi there. Are you having any promblems with the Neurontin? The reason i am asking is that i took only (1) neurontin and was taken to the hosptail. Breathing Promblems, Sharp pain in my right arm. plus nerurontin has (12) unexplained deaths due to nerurontin. Please be careful with this durg.If you get any pains in your arm/arms go to the hosptial right away. Or if you feel funny in anyway plase get it chcked out by a doctor or go to the hosptial right a way.
Josephine
Help!!
I was just taken off of Tegretol yesterday & told to start taking Carbatrol, but my insurance doesn't want to pay the full co-pay for that one. Now my Dr. is going to trying to figure out what to put me on in the place of the Tegretol. Apparently Tegretol is getting hard to find by pharmacists. Are any of u coming across that problem ?
I also take Neurontin & Topomax, just need some ideas & this way I can throw them at my Dr.
Thanks,
JB :)
Hi there. Are you having any promblems with the Neurontin? The reason i am asking is that i took only (1) neurontin and was taken to the hosptail. Breathing Promblems, Sharp pain in my right arm. plus nerurontin has (12) unexplained deaths due to nerurontin. Please be careful with this durg.If you get any pains in your arm/arms go to the hosptial right away. Or if you feel funny in anyway plase get it chcked out by a doctor or go to the hosptial right a way.
Josephine
KittyMom
08-30-2003, 02:00 AM
Josephine,
Where did you find the information on the deaths due to Neurontin?? Please tell me I am eager to know....PLEASE!!
JB,
Please read my post "Please give me some indication" I would love to hear about your petite mals....Thanx!
God Bless you Both. You are in my prayers.
KittyMom
Where did you find the information on the deaths due to Neurontin?? Please tell me I am eager to know....PLEASE!!
JB,
Please read my post "Please give me some indication" I would love to hear about your petite mals....Thanx!
God Bless you Both. You are in my prayers.
KittyMom
DSholly
08-30-2003, 08:37 AM
I have started taking a drug called Kepra. It is working great. For the first time in many years I have a a whole month seizure free.
mommajessibelle
08-30-2003, 09:20 PM
kittymom im not sure where but i read that too about the 12 deaths due to nuerontin i was on this drug for about a year and i was finally taken off it when my dr realized that it wasnt controlling my seizures i have grand mals we have been waiting for my insurance to change it does that on the 1st and i will then be seeing about getting the vns i mean i have looked at both the pros and cons of this thing and im willing to give it a try if my insurance will let me lol you know how they are im sure but atleast with the vns you dont have all the side effects like you do with meds i think the main side effect with vns is voice hoarsness when it goes off but thats only temporary you might want to seriously look in to it
------------------
mother of 3
ages 4,3,and 1
my pride and joy
diagnosed with epilepsy jan. of 97
live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow
------------------
mother of 3
ages 4,3,and 1
my pride and joy
diagnosed with epilepsy jan. of 97
live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow
guineapig
08-30-2003, 10:42 PM
That's interesting news that concerns me, JB. I personally cannot say that finding Tegretol has been difficult (using my HMO as the guide). NO kind of Tegretol has been placed on the HMO formulary (you know, the list of drugs that the HMO discounts down to $10, $5, or free (I WISH!)a pop), however they cost LESS than standard pharmacy rates with standard Tegretol (by going to the HMO pharmacy), until I had to start on the 400mg XR 'horse pills'! Heck with it, if they stop carrying or making it, I'll just stop cold turkey and wear a head guard (like amateur wrestlers wear) full-time!
dwpavlik
08-31-2003, 01:45 AM
Hi Kitty Mom
The following is some info from the Medical drug reference computer program. It contains info that is in the pamphlet inside of the medication box.
Side Effects: This drug is usually well tolerated. Drowsiness, dizziness, unsteadiness, fatigue or nausea may occur. If these effects persist or worsen, notify your doctor. Unlikely to occur but report promptly any mental or mood changes, tingling or numbness of the hands or feet, swelling of the ankles, vision problems, fever or unusual bleeding. Very unlikely to occur but report promptly fainting, difficulty moving, stiffness, uncontrolled movements, stomach/abdominal pain, leg or chest pain or trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist.
I read the notice about the 12 unexplained deaths in the packaging from the box we got from our pharmacist. So that reference can be found on that paperwork. You should be able to ask you r pharmacist for a copy of it if you are on good terms with him. We have been using the same one for near 18 years.
Don for Jo, my wife. :)
The following is some info from the Medical drug reference computer program. It contains info that is in the pamphlet inside of the medication box.
Side Effects: This drug is usually well tolerated. Drowsiness, dizziness, unsteadiness, fatigue or nausea may occur. If these effects persist or worsen, notify your doctor. Unlikely to occur but report promptly any mental or mood changes, tingling or numbness of the hands or feet, swelling of the ankles, vision problems, fever or unusual bleeding. Very unlikely to occur but report promptly fainting, difficulty moving, stiffness, uncontrolled movements, stomach/abdominal pain, leg or chest pain or trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist.
I read the notice about the 12 unexplained deaths in the packaging from the box we got from our pharmacist. So that reference can be found on that paperwork. You should be able to ask you r pharmacist for a copy of it if you are on good terms with him. We have been using the same one for near 18 years.
Don for Jo, my wife. :)
KittyMom
08-31-2003, 02:38 PM
WOW!! Thank You Thank You Thank You!!! I am worried about it but I do have one thing...I have never felt more like "my old self" in a looooong time. My doc increased my dosage and after the week to get used to it I have never felt better. My mood is great. My outlook on life is better. I haven't had a seizure in DAYS!!! (That is good for me. I usually have them 4 times a week) I feel like a million dollars...
DO YOU THINK I SHOULD BE CONCERNED???
God Bless you and thanks again for the info.
KittyMom
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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
DO YOU THINK I SHOULD BE CONCERNED???
God Bless you and thanks again for the info.
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
dwpavlik
08-31-2003, 03:38 PM
Hi All
To let you know a little more information. We have read the bad affects, and the side affects. But we have also heard of many patients that have had great luck with this medication. If you do not have the bad side affects, then this med should not be a problem for you. I think it is great that you are balanced with your seizure care. I hope it will stay that way for you. My wife has had such a tight control that she has avoided seizures for near 2 year. But as soon as her meds drop she goes right into grand-mal’s. So we watch her levels religiously. Again glad for you and the success of your control.
Don :)
To let you know a little more information. We have read the bad affects, and the side affects. But we have also heard of many patients that have had great luck with this medication. If you do not have the bad side affects, then this med should not be a problem for you. I think it is great that you are balanced with your seizure care. I hope it will stay that way for you. My wife has had such a tight control that she has avoided seizures for near 2 year. But as soon as her meds drop she goes right into grand-mal’s. So we watch her levels religiously. Again glad for you and the success of your control.
Don :)
KittyMom
09-01-2003, 12:58 PM
dwpavlik,
I don't have control over my seizures by any means...well, not yet. I am sticking with my meds because it is controling my gran mals but not my SP & CP. Right now I fear I am just on one of my 10 day streaks but I welcome those. I get to feel very close to my old self again and I miss that.
I am not scared, I just need to be well informed. I don't trust all that is told to me by my doc. I never would have known that my auras are seizures if I waited for him to tell me. He just assumed I knew that I guess.
Anyway, God Bless you and yours,
KittyMom
I don't have control over my seizures by any means...well, not yet. I am sticking with my meds because it is controling my gran mals but not my SP & CP. Right now I fear I am just on one of my 10 day streaks but I welcome those. I get to feel very close to my old self again and I miss that.
I am not scared, I just need to be well informed. I don't trust all that is told to me by my doc. I never would have known that my auras are seizures if I waited for him to tell me. He just assumed I knew that I guess.
Anyway, God Bless you and yours,
KittyMom
JB_Texas
09-03-2003, 11:07 AM
Guineapig:
Whenever I need my monthly refill of the Tegretol XR 100 or 400mg (horse pill) I have to call about 5 different pharmacies until I find one that has enough to fill a month supply for me. It's becoming a pain in the a** :mad:
Kitty Mom:
I have the Petit Mals in my sleep about every 3 mo's. I don't even know I have them when I wake up. My husband tells me. They are very mild, especially compared to what I used to have for over 15 yrs straight (gran mals). What exactly do u do during a petit mal. Maybe mine aren't considered that???
Josephine:
I have been taking Neurontin for several yrs. now, probably around 10. I started taking it when it 1st came out. I was like a guinea pig trying out a new drug to them w/that other new drug, phelbatol (spelling) they had to take me off of that because I became too thin & my Dr. told me it caused blood problems.
Now that you mention it I do notice sharp pains in my stomach sometimes (very, very sharp) I just ignore them because I have also had some major stomach problems along w/severe endometriosis. So who knows if it was the Neurontin or what? Otherwise it has done me good.
Whenever I need my monthly refill of the Tegretol XR 100 or 400mg (horse pill) I have to call about 5 different pharmacies until I find one that has enough to fill a month supply for me. It's becoming a pain in the a** :mad:
Kitty Mom:
I have the Petit Mals in my sleep about every 3 mo's. I don't even know I have them when I wake up. My husband tells me. They are very mild, especially compared to what I used to have for over 15 yrs straight (gran mals). What exactly do u do during a petit mal. Maybe mine aren't considered that???
Josephine:
I have been taking Neurontin for several yrs. now, probably around 10. I started taking it when it 1st came out. I was like a guinea pig trying out a new drug to them w/that other new drug, phelbatol (spelling) they had to take me off of that because I became too thin & my Dr. told me it caused blood problems.
Now that you mention it I do notice sharp pains in my stomach sometimes (very, very sharp) I just ignore them because I have also had some major stomach problems along w/severe endometriosis. So who knows if it was the Neurontin or what? Otherwise it has done me good.