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some success with time-release

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Old 05-10-2002, 04:07 AM   #1
Join Date: May 2002
Location: FL
Posts: 56
guineapig HB User
Smile some success with time-release

appearently my first post was unsuccessful... try again!

Was medicated for epilepsy at age 5-16, successfully got off meds (with Dr. help, of course) at age 16. Was medicine free AND seizure free from 16-24, then it came back!

Naturally with Tegretol came all of the side-effects: The first month or so was hell. Dizziness, EXTREME lethargy 24-7, and speaking longer term, weight gain as well.

Recently I have successfully fought the weight gain, went from 230 down to 212. Naturally I assumed that I could reduce the Tegretol accordingly. Was doing better when one day a couple of months ago (Jan 2002) I 'passed out' behind the wheel! fortunately no one was hurt, however, I checked myself in to see if it was in fact, epilepsy (or to prove that it was NOT, IN FACT, alcohol or something else, for legal sake (I never TOUCH the stuff!))

The doctor attending must of had some newer training, for whenever I want to look for seizure activity, I would do an EEG-- this fruit-loop did a CT scan, and based SOLELY on the evidence of brain scars from surgery done 25 years ago, shoves me out of the hospital with a paper stating that I did, in fact, have a seizure!

Anyway, a week later, and my HMO butcher may have made a GOOD decision for once-- I went from standard Tegretol generic to Brand-name Extended Release... The good news? A LOT LESS lethargy! The bad news? Some degree of CONSTIPATION, but it seems to be getting tolerable with time.


You know how Tegretol time release warns AGAINST chewing the pills up? Well, I surmise that this must have something to do with the medicine's time release action... It is probably intended to DIGEST SLOWLY in one's gut due to something that they concocted within. If you chew them up, then no more time-release, right?

Anyway, I NEVER HAVE chewed them since I've been on them, but something worries me... I THINK that I have spotted UNDIGESTED PILLS in my 'waste'(in the toilet, I won't get more graphic than that.)! No wonder that I'm feeling so good, I might be drug free again, and not know it! It wouldn't suprise me, considering that the additives involved with 'time release' has the function of SLOWING DOWN the digestive process! Sure would be nice, considering that I haven't had any siezures for at least two months now! To be sure, I better get it checked again (but maybe by an INDEPENDENT SOURCE, not these subcontracted clowns that my HMO 'butcher' sends me to!)BE WELL!

[This message has been edited by guineapig (edited 05-16-2002).]

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Old 05-10-2002, 07:49 PM   #2
Beth's Mom
Join Date: May 2002
Location: Ohio
Posts: 92
Beth's Mom HB User

Guninea Pig,
I sense hostility in your response and I feel for you.
Our daughter Beth's brain damage came from a botched birth. Our doctor was on vacation and let a doctor who was supposed to be his new partner fill in (they disolved their connection 6 mo.later with our doc paying him off to get him out of his office)...of course I was never to learn that until 9 years later when I became fed up with doctors who seemed to be dodging my questions and went to a lawyer. To make a long story short we sued the doctor who delayed Beth's birth and deprived her of oxygen and a normal life.
We won the court case with much difficulty. Our lawyers wanted us to sue everyone involved but we only went after the doctor who called the shots the day she was delivered and the hospital as we did not want to hurt well intentioned doctors who truly care. Our son is college age and wants to be a doctor and you know, we are cheering him on. Doctors are not mini Gods on earth. They are usually intelligent and searching for answers as much as we are. When our daughter was 16 and put on the dangerous drug Felbatol our neurologist did not adequately warn us of the side effects we would face and the danger involved. We were eating dinner at our summer cottage in a remote area when our son noticed the evening news was saying that doctors were being told to take people off Felbatol if at all possible due to several deaths. I walked outside and became ill...we packed our bags and returned home...Beth vomitted most of the way back. We refused to go to a hospital as we knew they would take her from day one and she was in too perilous a shape for that. I told our neurologist when we returned that he had not been there for us throughout this ordeal and that I needed his help fast...he got us in to a neutritionist and gave us the help we needed.
I trust in doctors but feel they can only do their job if we continue to be alert to variables that can help them determine proper courses of action.
And, at the risk of turning you off, as I know religion is something so private with people, I will simply say that at one point I had exhausted help from anyone for Beth and turned to the Lord for his will to be done with her. Since then I have trusted that he is there in charge of hers and our destiny. That does not mean that I do not look for human medical intervention, but that the plan is there if I look for it.
Coming on this site is my way of looking for God's plan through all of you. I want to learn from you and hope that in some small way I can also tell you things by chance that will lift calm your fears or increase your understanding of what you are facing. We are all in this together. I did not know that time released Dilantin could be better than a generic brand of the taught me something tonight.
Noticed you are a student and you show passion and insight into the world around you. Stay aware and give the doctors and the system a chance to be inept occasionally...they are not perfect.

Please keep writing all of you!
Beth's Mom

Old 05-10-2002, 09:05 PM   #3
Join Date: Apr 2002
Location: Williams, Az.usa
Posts: 377
Kokopelli HB User

Hi Beths Mom and all,

I too had a very difficult time on felbatol will never do that again thank god I am seeing some of the other stories from others I would probably go on beleiving what my old neuro said and that was I was allergic to it. well I had the same problems as your little girl.. he even put me in the phyco ward saying I was dreaming this all up before he finally took me off it I had three major panick attacks geez I am really glad you came on and posted this I think I am going to look into this.... Hugs


Old 05-13-2002, 04:08 AM   #4
Join Date: May 2002
Location: FL
Posts: 56
guineapig HB User

Dear 'Beth's Mom',

I too believe that 'many' physicians are sincere. However, I can honestly say that I have seen a big difference between the care that I recieved at Children's Hospital (Washington, D.C.) about 25 years ago, (when they had to remove a 'mass' from an accident I had less than a year prior), and the care that I recieve today. To me, the word 'maintenence' in HMO is understatement!

As for God, I was a social science major in college, so when I approach modern medical care from a structural-functional view ('institutional'), and point to the inadequacies, you bet that I believe in higher power. No, I don't give up my medicine and go off to meditate, and cross my fingers. That would be like the guy who constantly begged for God to let him win the lottery, until one fine day God rolled the clouds around, beamed sunlight on the guy, and boomed,"Why don't you buy a ticket, sir?" All kidding aside, I look at it as proof that most anything that man tries to do with his institutions is somewhat flawed and imperfect, either working as 'two steps forward, one back" on their better days or totally flawed on others. That makes me APPRECIATE God, knowing that there is some example to strive toward, that only HE can give us! So of course, prayer to me isn't just a throwoff excuse: "Here God, do SOMETHING ('for ME')." Rather prayer is time for HIM to help me REFLECT, and ultimately to find another course of action that IIIII need to take, by his example. He wants us to play a role, too, and to learn and spiritually grow from the experience, not just throw it to HIM!

Thanks for the comments, I hope that everyone does BETTER!


Old 05-13-2002, 06:51 AM   #5
Junior Member
Join Date: May 2002
Location: rye,colo,usa
Posts: 12
rekabs HB User

I to have the same felling about the medical money pit. Just recently I went to the docter about dizzy spells not just light headed I meen can't stand can't walk dizzy the doc tells me it was a viral ear infection no testing or anything. So he gave me a persciption and I thought it was for infection. Come to find out it was moution sickness pills to releve the dizzyness. when I found this out I call the doc and he says that it was viral and not much he could do anyway two weeks later im still dizzy and shaky both nuro doc and primary care say that its the other docs. problem its not my meds. the nuro doc. ordered a out of office med. level test and the primary doc. says it is eather the meds or a infection in my ear. Neather doc. has tryed any thingWho knows if the out of office lab even tested my blood. I have an app. with a new doc. to see what they say. what happend to the good old Doc's that took time to find out what was wrong these Doc's today are med pad doc's they look at you and give you a persciption!Part of that is the HMO they hasle the doc's about tests and other medical prosedures so they have one arm tied behind there back and are gun shy don't want to do some thing that they wont get paid for.I could go on all day doc and insurance bashing. I understand how you feal mabey uncle sam could do something diff.

Old 05-13-2002, 09:08 AM   #6
Join Date: Apr 2002
Location: VT USA
Posts: 446
Krazykcio HB User

Hey there,
I agree with the problems we face being controlled by HMO's. I was seen by six different Doc's following my first seizure in Sept. The ER Doc sent me back to my primary care Doc. He was on leave (wife had baby), so I was seen by his replacement etc., etc. I kept complaining about dizziness, mental confusion, extreme exhaustion, and word retrieval problems. The Neurologist they sent me to was no help. My blood work was bad (low potassium and red blood cells, high Alkaline Phosphotate etc.)Finally,when I went to my primary care Doc because I was told he wanted to see me, I arrived and he was "out for an emergency." A new Doc in the office saw me and asked why I was there?! I lost it! I told her about all my symptoms, and that I was real frustrated because nobody seemed to be listening. I also complained about poor follow-through regarding test results etc. She has been wonderful! She switched me from Dilantin to Carbatrol, and gave me timed-release pills. She has called whenever a test result has arrived on her desk, and sends me a written summary of our conversation to help with the mental confusion. I recommend that each of you become self-advocates, and don't be afraid to be pushy. I feel much better, physically and mentally, and feel like I have a Physician that takes the time to review my symptoms, meds etc.

As for religion, I agree that the power of prayer is very helpful, but devine intervention sometimes has to come in the form of the patient gaining medical knowledge and insisting on the best care possible. Thank you all for posting at this site. It helps to share our experiences, and sometimes our solutions. Be well all! Kathy
When Mamma ain't happy ain't noone happy!

Old 05-25-2002, 05:14 PM   #7
Junior Member
Join Date: Jun 2001
Location: Virginia Beach, VA US
Posts: 43
kutie HB User

This message is in response to guineapig's 1st post... You mentioned that you think you have the tegretol extended release in your "waste"..... I did read about this - the actual outside shell part on the Tegretol does NOT digest, and it passes through by itself - so you may be seeing the outside part of the capsule, the inside should be empty... sorry about the ickiness!!

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