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Posted , 6 users are following.

sandraw
sandraw

I have had epilepsy for over 40 years. I have alwways taken 150mg epanutin twice a day. I have had a blood test and had the doose reduced to 100mg twice a day. I have blurred vision and have lost my balance and have tremors. Is this normal? Maybe it is the new pills made by flynn and not pfizer. Has anyone else experienced this?

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  • Winnie143
    Winnie143 sandraw

    Posted

    When younger I was told not to have Children while taking Epanutin so I only had the one, my daughter,  I came from a big family but I was put on Epanutin and I was told not to have Children by the Doc who put me on them . But was okay with my daughter on phenobarb and had lots of tests while on Epanutin ie sample all free lol ..I took 100 x 2 per day.  Keep smiling xx

     

  • Winnie143
    Winnie143 sandraw

    Posted

    Will have to  start a company up  called  "Phew Ya dont want them"  lol xx

    Be well Both xxx

  • steve1951
    steve1951 sandraw

    Posted

    Sandraw I do think the manufacture of drugs makes a difference. Once a patent on a drug runs out, generic manufactures can be granted the rights to make a drug. Even if the patent on a drug runs out, I found out the patent on the time release binders, the glue that hold and releases the drug into your body, never expires. A generic manufacture has to develop their own binders, and as result, the drug may be released too fast or too slow into your body. I live in the U.S., my insurance will only pay for generics. I usually get one brand of generics. Lamotrigine, generic form of Lamictal, and levetiracetam, generic form of Keppra. One time, the store changed the generic manufacture of levetiracetam to another generic manufacture. I started to have auras. On my next refill, they had changed back to the usual generic brand and my auras went away. My Dr seems to think all generics are equal to each other and the name brand. Little does he know….

    Last year in America, the Food and Drug Administration (FDA) has received so many complaints about certain classes of generic drugs, they started testing them. AED’s are among the top of the list. The FDA is a government agency so I don’t expect speedy results before the year 2020.

    • sandraw
      sandraw steve1951

      Posted

      Hi Steve, at lasr someone who also thinks the manufacturer makes a difference. I have a cocktail of drugs as I have absences, grand and petit mal. From what everyone says I would be better without epanutin, but changing drugs and doses is very scary. Sandra
    • lucy82013
      lucy82013 steve1951

      Posted

      I can't take 25 mgs and 100 mgms capsules of phenytoin due to the additives in the gelatin capsule.

      Can only have certain brands of other drugs!

      Are you on tablets or capsules? Which is better if any?

      Lucy

    • steve1951
      steve1951 lucy82013

      Posted

       Lucy

      Both the Lamotrigine and Levetiracetam ER I take are tablets. I don’t think they come in capsules. The Levetiracetam Extended Release I take once a day wouldn’t work as a capsule. It’s coated and suppose to dissolve slowly into the system over a 24 hour period. The only seizure med I’ve ever had in capsule form is Dilantin. As far as which is better, a capsule or pill of meds, I don’t know. Most generic meds are now made in India or China. Both of my meds are made in India. Lamotrigine is the generic of Lamictal. Lamictal is made in the U.S. and when the patent expired, generic Lamotrigine came on the market. I noticed a difference when I was put generic Lamotrigine. Insurance won’t pay for Lamictal and I can’t afford $1,170 a month to get it. Same situation with Keppra ER, (levetiracetam ER is the generic), prices are outrageous. I have psoriatic arthritis in my right knee so I can’t rob a bank and run away very far.  

      Steve

  • Winnie143
    Winnie143 sandraw

    Posted

    I was scared Sandra as when you take pills for a long while you think they are the best for you.  I was exactley the same.  Read up on Epanutin and it will make you go  "Get me Off These" lol xx   Try dropping the dosage slow and explain to Doc you cannot come off them as we do get dependant on them and think they are the best thing since sliced bread and it's scary so tell him you'll take so much less per day while taking another drug to help you and so on xx Good luck xx
    • sandraw
      sandraw Winnie143

      Posted

      I am hoping to see the doctor today so will try. I will let you know how I get on. I still have tremors, blurred vision and my balance is not good. Hopefully there is light at the end of the tunnel. Sandra xx
  • steve1951
    steve1951 sandraw

    Posted

    One more general comment on AED’s. Some of them can cause vitamin D3 deficiency heightening the risk of developing osteoporosis. Some vit.’s like folic acid can decrease the amount of the med in your body. It’s a mixed bag depending on what meds you take. I’ve I asked my neurologist about vit’s. He doesn’t believe in them or aware of the side effects these meds have on the body. He never does blood test. My GP (one the best Drs I’ve had), told me to take a B complex and D3 only. He didn’t mention why, blood tests? (he does blood tests on a regular basis for vit and minerals and doesn’t relate them to epilepsy). I take another med for psoriatic arthritis which depletes folic acid. I’m on a prescription strength of folic acid. This Dr also does blood tests for folic acid levels and other possible interactions of the med; he doesn’t do it for epilepsy.

     You may want to look up on the web how your AED(s) effect the amount of vit’s and minerals in your body. Ask your Dr for advice if he/she knows anything about meds, vit’s. and minerals. Ask for a blood test. The only time my neurologist did blood test was when I was on dilantin, only to check for the meds level, not vits and minerals.

    • sandraw
      sandraw steve1951

      Posted

      Hi Steve I am seeing the doctor today and will let you know how I get on. Sandra
    • lucy82013
      lucy82013 steve1951

      Posted

      Steve

      Mind if I ask you if you are in the UK and whereabouts roughly of course!

      I have had similar experiences over blood tests.

      I have a vit D deficiency disorder and peripheral neuropathy thought by specialists to be due to phenytoin/epanutin.

       

    • steve1951
      steve1951 lucy82013

      Posted

      Hi Lucy,

      I live in the U.S., California. I think many Dr’s are unaware how meds can affect the body of vits and minerals. I doubt med schools even discusses vit’s and minerals. The vits B seems to support the nervous system from what I’ve read. B6 is the vit singled out that may be beneficial for the nerves. I bought a B6 supplement, it made me dizzy. Probably too high of a dose, 100mg which is 5,000 the recommended daily dose. I quit taking it and take a B-complex containing all of the B vit’s. My GP (general practitioner) told me take vit D and a B complex after blood tests. I take vit D in the form of D3. I don’t know if it exists outside the U.S., but I only buy vit’s that have a USP label. USP is a non-profit lab that tests the quality of vit’s. If a vit company doesn’t make a quality vit, it doesn’t get a USP approval label. Some AED’s can also contribute to osteoporosis.

      I have arthritis in my knee and take a prescription dose of 1 mg of folic acid a day since the med I take for it depletes folic acid. Prescription meds can’t be tested and get a USP approval rating. But I think the quality of generic meds vary by manufacture.

      My neurologist never mentioned a cpap. I had phenomena and spent a month in the hospital when they found out I had sleep apnea. The last time I used it was the night before a knee operation. My GP suggested it, but I gave up since the setting is too high and I don’t know how to lower it. If you get a cpap, only use distilled water, not tap water. And when you clean the water reservoir, use clear dishwashing soap with no dyes.

      Halloween is a merchandizing fiasco in the U.S. Candy and costumes are on store shelves on Sept 1 and Halloween is Oct. 31! Same with X-mas, merchandizing begins on Oct. 1.

      Happy Halloween, Merry X-mas, Happy New Year, Happy Easter, Happy Birthday, and most important Happy and Merry Health.

      Steve

  • steve1951
    steve1951 sandraw

    Posted

    One more comment about vits and minerals. I don’t mix them together at the same time. I’ll take them after a meal when I don’t take my meds. I don’t know if it matters, but I do it just to be safe.
    • Winnie143
      Winnie143 steve1951

      Posted

      I had a good Doc when younger he did for me what your Doc does for you Steve.  I told him I sit up the hospital all morning and I get weighed and my toe moved up and down and they said the run of the mill thing like "How you been" I'd say fine or not good and then they'd say, So on the whole you are fine" ha ha  So I told my Doc and he said "well we can do it here and if you need a chat come and see me" 

      But I got married and moved !! thats when I got Epenutin

      Be Well All xxxx night, well it is here  xx

    • steve1951
      steve1951 Winnie143

      Posted

       Winnie One side effect of Lamotrigine is weight gain, but moving my toe up and down ain’t going to do much about it. What about a two toe step? Does your husband know you’re involved with some guy known as Epanutin? (Had to through in a joke).

      A good caring Dr is very important. I especially like my GP keeping track of regular blood work. I can talk to him and he always has an answer. I don’t feel rushed. I also like my neurologist, been seeing him at least 25 years, but I never ask him a question outside of epilepsy. He keeps a tight schedule of a 15 minute office visit most of the time. He’s an office Dr. My GP also works in hospitals which is where he first treated me for lung infections.  

    • Winnie143
      Winnie143 steve1951

      Posted

      My Doc reads notes on computer and goes "hmmm hmmm "  then he asks was I talking ..I give up lol  I get so many mins and if longer I have to book a double appointment !! joke lol

      Wonder how  Sandrew got on at Docs !!

      Keep well All  xxx  Your new pal Win even if ya dont want me as pal you 3 are lumbered  lol xx j/k xxx

    • steve1951
      steve1951 Winnie143

      Posted

      I’ll give my neurologist extra credit. He has an open e-mail address patients have access to. I’ve used it a couple of times for short questions. He’ll answer back in one or two days. When I was having problems, I had an MRI. Instead of having to make another appointment, he e-mailed me with the results. Lamotrigine causes insomnia, so I’m on sleeping pills. When I had a question if he thought the sleeping pills were lowering my threshold, he answered back and didn’t think so. My 2 other Dr’s don’t offer these services.

      I live in America and sometimes have to re-read some of the comments since the meaning can be slightly lost in translation. When you say we are lumbered, I think of getting hit upside the head with a plank of wood.

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