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Old 09-04-2002, 02:24 PM   #1
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Location: england,bristol
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lulabell HB User
Smile Thankyou

thankyou to everyone who replied to my message. Your encouragment is very helpful. In reply to yourquestions tattoo, being made medically retired in england means that your employer sends you to a doctor for examintation and to ask you about your medical background. The doctor will then give his/her opinion of whether you are fit to do some work or no work etc..After you have been refered to the doctor 3 times they then have to decide whether you are fit to work at all. If they decide this then you are medically retired. If you apply for another job, they automatically ask your previous employer for a reference so that they can gauge if you are suitable for the job in question. On that reference will be noted that you were medically retired and that certainly will be a put off for any future employers. They can also not be cught out under the equal opportunties act because they will just say that you didn't get the job for other reasons. The type of fits I have are Partial and Complex partials, I also get auditory and visual disturbances. The meds I am on are carbamazapine, lamictal, keppra, topamax, and frisium( they are just for the Ep). I also take temazepam, citalopram and dihydrocodien. So I am pretty much a zombie for most of the time.

Hope to hear from you all again soon.
Lulu

 
Old 09-04-2002, 02:59 PM   #2
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Thanks for the explanation re Medical Retirement. It sounds a lot like disablity here in the US. What prompted me to respond was all of the meds you are on. Gracious! I'd be a zombie too. Anyone would. It sounds top me that when you say Partial seizures, you may be referring to Simple Partials. Both Simple Partials and Complex Partials are Partial seizures which mean that they originate from a focus in the Temporal Lobe usually. Has your doc mentioned surgery to you or the VNS? My diagnosis is Complex Partial Epilepsy but I had Simple Partial seizures as well. The Simple Partial seizures involve less area of the brain and do not affet consciousness where as when a larger area becomes involved, consciousness is lost. Those are Complex Partial for me. Those can become Secondarily Generalized a well. Of the meds you listed, I took, Tegretol/Carbamazapine, Lamictal, and Keppra, but not at the same time! I was never on more than two AEDs at the same time. I am sure you are aware that too much meds can trigger seizures too. Is your doc an Epileptologist that treats ONLY Epilepsy patients? I forgot if he is or not. That can make a big difference in your care if being treated by an Epilepsy Specialist is possible in England. I now that there is an international Group that feels that too mny patients with epilepsy are not receiving adequate care. I will post the link in the next post. I have to find it. I really feel bad that you are taking soo much meds especially if they are not working and, just as important if not more so, are decreasing the quality of your life. That's seems to be going against what the purpose of treatment is for in the first place. No part of life should be lost because of the actions of drugs. There has to be a better way. Tattoo

 
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Old 09-04-2002, 03:36 PM   #3
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lulabell HB User
Question

Thanks Tattoo,

I am being treated by an Epileptologist and he seems to feel that I will definatly be controlled by the meds, so I haven't been offered the vns. He does want to reduce the amount of drugs I am on but I was having about 10-15 seizures per day and now I have about 3 per week, so he doesn't want to upset the balance too much. I do think I need to come off of the med though, I am exhausted all the time, I am only awake for about 4hrs at a time. Were you so tired on Keppra?. How did the vns work out for you?

Lulu

 
Old 09-04-2002, 08:50 PM   #4
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Hi there. I didn't have the VNS. I did have the typical surgery for Epilepsy, a Right Anterior Temporal Lobectomy with Amygdalo-Hippocampectomy. People with Complex Partial Epilepsy seem to do well with surgery. The numbers are good. When we first started talking about surgery, my doc mentioned the VNS, but said that with the type I had, surgery would give me a higher percentage of success than the VNS would. It depends on the type of seizures and where the focus is located, if there is more than one foci etc. There are many factors used to determine which is best, but for Complex Partial with one focus, the success rate is high. If the meds you have to take do not control/stop your seizures and are hindering any quality of life then it is time to begin thinking that other options may be necessary. It is totally your choice, but look at both sides. I was on eight or nine different meds at one time or another, not at the same time as I said, but now I just take Keppra. I do not experience being tired, but you do take considerably more than I ever did at one time. Meds do interact with each other to cause other side effects. You are on enough different ones that I would expect some definite interactions. Regarding being tired, have you had a Medical doc assess this problem since the meds can also cause Medically related issues as well? I did notice that Keppra did interfere with my sleep when I first started taking it, but that seems to have subsided after I changed the time I take my PM dose. I take it earlier than I used to take my PM doses. The statistics regarding meds and control of Complex Partial seizures are these. Once ONE AED fails to stop the seizures, there is only a 15% chance that ANY meds will ever work at all. Complex Partials as you know are the hardest to control medically. Continuing to have seizures even if less in number are still capable of doing damage over the long term and causing the process to progress. Tattoo

 
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