Change Of Meds disaster, after breakthrough seizures
Posted , 3 users are following.
Hi Everyone, i am wondering if anyone may have had a similar situation to me, and what their experience may have been, a quick summary,
April - 2012 frontal none malignant tumour diagnosed following tonic clonic seizure, immediately put on Phenytoin - successful debulking surgery - month later infection, surgery again to remove infected bone.
Main point from April 2012 to October 2014 not hint of a problem at all, fully confident in every aspect of life.
Appointment with Consultant, wants to change me to more modern meds, Keppra, no seizures but terrible depression, came off 4 months later put on Lamotrigine by about end February.
August - you guessed it breakthrough seizure, Lamotrigine increased, later put on Epilin as well. November, another seizure, doses increases. April !st, no joke for me that date, 2 seizures within 2 hours, Epilin dose increases, wife said 2nd seizure far more violent.
Now my inclination is I want to go back on Phenytoin, I had Neurosurgery twice, other complications and still no problems ?, was only taking one med, which a blood test once revealed once, I was below the theraputic dose for some time. Now I take two lots of meds, and had seizures.
Has anyone else had a similar history and gone back and was it successful, or is my simple brain failing to grasp what Consultants of many years training and experience may know.
I have lost my driving licence which severely limits my chances of finding a job, besides which I doubt I would even be confident to drive, or even now ride my bike. Going back would be going back to square one, but at this stage, I am back at square one, and feel they are just tinkering around. I mentioned it to them last week, and thought better of it, but now feel what is the difference, and my advice to anyone for what it may be worth is, if it ain't broke, don't fix it , sorry for a long post
0 likes, 7 replies
SteV3 tim14982
Posted
Don't apologise for long posts, I write far longer ones, and even though they are full of content, some people don't like reading black print on a white background, there are tools that could be used with a browser to combat this though.
Anyway, back to seizures are these Epileptic or Functional Episodes, many people get misdiagnosed between the two, they look identical but there are many differences as well - Functional Seizures have 28 variations, Epilepsy has quite a few as well.
I am on 1,900mg a day of Epilim, but this is under a change due to the amount of other medications taken which amounts to 30+ a day, then 6 injections every 10 weeks of BoTox, for Dystonic Disorders.
After awhile the body does become immune to various medications, therefore it is necessary to change them every so often. I suffer from Epileptic and Functional Episodes both look at the same to a person watching you at the time, a paramedic would treat you for Epilepsy, but its not - Functional Episodes send no electrical pulses around your body, you have no control over the spasms whatsoever, but you can see and hear people - however you cannot communicate with anyone which is the difference.
Regards,
Les.
tim14982 SteV3
Posted
Thanks, my seizures last about 3-4 minutes, and i am totally unconcious, convulsing, and not aware until I start to regain conciousness.
I have read of people being on meds for 10 years or more, they said at the hospital that I could have had a breakthrough seizure, fair enough, but guess i won't know now. I wasn't on Phenytoin for long approx two years without a hint of a problem.
Following the seizures 3 days ago my Epilin was increased from 300 to 400mg a day and am on 300mg
Lamotrigine.
I just felt that upping it 100mg is just tinkering, I don't want to be in the position of 6 months then seizure then 100mg more, then 6 months then seizure, when I had no problem before. I am sure my problem is far less serious than most, but it just seems to have been a pointless exercise by the Consultant
SteV3 tim14982
Posted
You're welcome! 3-4 minutes is quite a low period compared to mine, the last one I had 2 seizures in an hour first one was around 10 minutes, then followed a seizure of 30 minutes roughly. By this time I was on oxygen and the paramedic took me in to A&E.
The doses of Epilim you are on seem very low, to say the least. I see a Neurologist, Epilepsy Specialist and a Pain Management Consultant - I guess we all have different cases, and people that look after us have numerous views. We are all different, I still get seizures on 1,900mg of Epilim, but there is other medications I am on that are known to cause them.
Tramadol is one such drug, and I'm on 200mg slow release per day.
Regards,
Les.
tim14982 SteV3
Posted
I am fairly new to seizures and I am sure probably I am luckier than most. Maybe the lower level of seizure I experience may indicate I only need a lower dose.
I thought that changing would be a small risk due to the lack of any signs at all on Phenytoin. I just worry this a cycle that could go on for some time until after many small increments we get to the righ level, when before we seemed to have hit the right level from the start.
Maybe it is too simplistic to consider turning the clock back, but they were better days for me
SteV3 tim14982
Posted
I have been on Epilim for nearly 30 years, and they are only changing it now because they do not like a patient going higher than 2,000mg a day. So, instead they change the drug completely which will take a few weeks to get in to my system like all drugs, the don't act straight away. Most main drugs take at least 48 hours to come out of your system, while others can take up to 2 weeks before you actually see any effect.
Regards,
Les.
steve1951 tim14982
Posted
If you were seizure free on phenytoin, did you Dr. give any other reason to put you on newer anti-epileptic drugs (AED)? I was on phenytoin once but it eventually didn’t work. It was also hard to get the right dosage. Just increasing the dosage a little bit, can multiply the amount in your system. One time my Dr. increased the dose and I had to lay on the floor for hours, the room appeared to be spinning. I had blood tests every 6 mos. to monitor the concentration and bounced the dosage up and down. It eventually didn’t work and I was switched to Lamictal (the real stuff, not lamotrigine) and it worked. Once the generic lamotrigine came out, I had problems later on and spent 2 and a half days in a hospital. Went to topamax, seemed to be effective, but I became dizzy doing physical work (land and construction surveying). My Dr. switched me to Keppra (before the generic levetiracetam was on the market) and I became very hostile. (I almost got arrested but the police brought me home instead of jail). Changed to carbamazepine, felt like a zombie at work. Now back on the 2 generics, lamotrigine and levetiracetam. Last summer I began to have auras and a couple of convulsions after taking a pain reliever. (Tramadol) I was maxed out on lamotrigine so the Dr. increased the levetiracetam. Still had a couple of problems, switched to ER’s (extended release) which are taken once daily. In mid-March, I had two hallucinations just after going to bed, not asleep. (All of my problems since last summer occur just after going to bed or just after waking up. When I wake up now, I get out of bed). My Dr. doesn’t think the recent hallucinations were seizures though. Switched back to regular lamotrigine 3/day, still on levetiracetam ER. Had a MRI last Monday but haven’t heard back from the Dr. I never miss a dose of meds. I have alarms set on my cell phone to spread out the doses of lamotrigine.
Tim, although I feel heathy, my Dr. said I will never work again. And after my recent episodes, I doubt I will ever get a driver’s license again. I live in the U.S. You mention consultants. I don’t know what you mean by this. Are they neurologist?
I think one big factor in changing episodes is related to the quality of generic AED’s. They’re not the same as the brand name drug but my Dr. thinks they’re equal. Insurance will only pay for generics. Once the patient on a med runs out, generic manufactures are allowed to make them. I’ve looked through the web and found other people having problems when switched to generics. I also came across an article and found out the patient on the binders, which hold the med. together never expires. So generic manufactures have to come up with their own time release binders. There have been so many complaints about generic AED’s in the U.S. the FDA (Food and Drug Administration) just started testing AED’s. About time! One generic brand is different from another generic brand. I don’t think I would be going through all of this if I could have remained on Lamictal, not the generic lamotrigine.
One factor your Dr.’s may not be considering is mixing 2 AED’s together. One AED taken with another AED may increase or decrease the concentration of the other. Your Dr. should know what effects mixing one AED with another, and if there is an interaction, do a blood concentration tests. If phenytoin was working for you, I don’t understand why they would change your med. Being newer doesn’t mean it’s better. Phenobarbital is one of the oldest AED’s and it works for many people. If it works, why switch? I’ve been switched on so many generic drugs because they didn’t work.
Les, I had knee surgery last year and the Dr. gave me tramadol for pain. That’s when I started to have problems. After that, I looked up tramadol and found it lowered the seizure threshold and stopped taking it. I called up the knee surgeon and mentioned it, he didn’t want to give me another pain reliever. I had a pre-scheduled appointment with my GP and told him about it. He wanted to know the name of the Dr. who prescribed tramadol. I also began to see an athirst Dr. for my knee and also mentioned it. He also wanted to know the name of the Dr. I think tramadol somehow changed something in my brain and became a catalyst for my recent problems. My neurologist doesn’t think so, but personally I think it did. From now on, if a Dr prescribes any new meds I’m going to look up for possible interactions. I don’t remember the dosage of tramadol, I threw it out. It wasn’t the slow release form (ER). My neurologist and arthritic Dr. have prescribed naproxen for knee pain. What anti-seizure med are they changing you to? I’d also cross reference any interactions between tramadol and the new med on the web.
Take care, steve
tim14982 steve1951
Posted
I checked I am on Lamictal, and my Pharmicists have been great to ensure that I get the same typebrand every time. I am in the UK so we refer to the more senior hospital doctors as Consultants. Anyway, I was not given any real major reason for coming off Phenytoin, other than it's lack of interaction with other medications, not that I take many.
My daughter works in the Health Service over here and said she saw recently that Phenytoin is in short supply from the manufacturers, we speculated was this the real reason for the change.
Also I said originally we found that for some time after a blood test I had been under the theraputic dose and my dose was increased as a result. This it turned out had been the case for some time. It just seems that all the evidence from previous use that the Phenytoin was the right one for me.
I have an appointment in June and am considering whether to demand that this is reversed, and see if we go back to normal, at first I wanted my driving licence back so badly, after having had it back for 1 year, and driven without a single worry. I didn't want to change and lose the time I had built up towards it, now i have lost 9 months towards the one year required, now I don't think that matters if every few months I go back to square one.
My thought when posting was if anyone on whatever medication had gone full circle with success, I know there is always a risk, and have to accept that going back to Phenytoin may not be the answer again, but it worked fully from day 1, even through some very difficult and life threatening times.
I think I will get a record of the end dates and new introduction dates and see what the pattern has been, I am starting to consider more that going back to Phenytoin is the best course for myself, it has to be my decision, and just wanted to find others experiences if they had been in a similar situation.