what to tell co-workers

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Hi- it's my first time posting here because I've always been able to figure things out on my own since being diagnosed with epilepsy about 5 years ago. I've been stable and seizure free for over 4 years now- all this time without seizures I've been taking Keppra XR. My doctor had offered to help me wean off of the meds after about 2 years, but I didn't want to mess with things, since everything was going so well. However, now my husband and are at the point where we want to try to have a baby, and I would rather not be on the Keppra during the pregnancy if I can come off of it successfully. I had a 24-hr EEG last month that was normal, and my neurologist feels I am a good candidate to slowly wean off the Keppra. She says that Keppra is one of the safest antiseizure meds to take during pregnancy, with a low rate of complications/birth defects, and that she has taken care of pregnant women on Keppra on much higher doses than me, who also took other seizure meds as well, and had healthy babies. But, she also says that it really has not been studied enough to have a true understanding of the risks toward the fetus. So, after talking to her and thinking about it a lot- I've decided to taper my dose with the goal to be completely off the Keppra before getting pregnant, but if I should have a seizure while I'm tapering down, I would be okay to continue it through my pregnancy, but hopefully at a lower dosage. I feel comfortable with this plan and I am looking forward to starting- with just one thing that has been really bothering me. Last year I moved out of state, to a totally different part of the country from where I was born and raised. I don't know many people around here and my closest friends I have made here are my co-workers. We are a very small, tight-knit group and we all know each others business/life stuff. I have not told them about my seizure disorder, not because I am embarrassed or anything, but because I'm private with it, and it has never really come up in conversation, and frankly- it does not impact my life at this point, and hasn't for 4 years, thanks to my Keppra, I just take my meds, and live my life. I would probably never even care about stopping the meds if I wasn't going to have a baby because I don't notice any side effects, or feel it effects me in any way, except that it prevents me from having seizures. Once I start to taper, I can't drive for 6 months. I plan on getting rides to work from my husband, other family members, and Uber. I know they are going to realize I am not driving suddenly and will definitely ask me why. I just really don't want to tell them I have epilepsy and I am weaning off of my seizure meds. I just feel very private about my seizure history and really don't want to talk about it. When I first was diagnosed, I was working at my old job, and although everyone was supportive and kind, I wished that I could have just continued going to work without anyone knowing about it. My co-workers love me, and will be constantly asking me how I'm feeling, and offering me rides, and I know it's just because they are good people who care, and I just want to keep it to myself. I disclosed my disorder and medication to occupational health when I was hired, so it is on my record/physical exam should something happen when I am at work, so I don't feel I have to share it with the people I see everyday at work. Does anyone have any ideas of some other excuse I can give for not driving for 6 months? Something not involving a DUI or my car being repossessed?

Comments

Cool in some ways but in

Submitted by just_joe on Sun, 2016-09-11 - 12:23

Cool in some ways but in other way not so cool.If the neurologist thinks it is time to wean you off meds that is the cool part. Weaning someone off meds is great. The reason weaning is done is because many people never have to take them again. Others that have not had seizures but have been seizure free slowly weaning them off if they have one the neurologist can reise the medication to the point it was before that seizure. I know my cousin had gone years and they were thrying to get her off but she had one and the dosage was raised back to the last dosage before the seizure. She never had another seizure.Not taking medications while pregnent is good thinking but mot everybody can do it. But they can get put on medications that has fewer side effects and the neurologists know those medications.Now the part that is not so cool is not telling anybody. That paperwork you filled out that is in your files in the HR department does not help if you have a seizure on the floor of your office. If you had a grand mal seizure in your office how long would it take to get that information from th back of your file in the HR department. Understand that the first people that will be called is the EMT's Does 911 have access to your files in HR. For some people it is a matter of minutes befor they are in trouble.Do the people around you kow that the information is in your files? Do your friends know what to do is you ever had a seizure? You can't drive when being tapered off meds because you might have a seizure. So people will need to know what to do if you have one. I too am personal. I don't tell everybody about my epilepsy. But I told the project manager. I also told certain people that were around me. They were supportive. As for sharing it with people at work... I have had people come up and ask me questions about epilepsy. When I asked where they found out I had it they said from Brian (progect manager) I was to answer any questions for this person if I could. It seems people have had friends or family members diagnosed with epilepsy. So yes informing people can be helpful to many people who have questions that they don't know where to get answers. Just like this forum.No you don't want them to think you had a DUI. If they drive by your house they can see your car. So they would know it wasn't repossessed. Either of those would be lies. The only thing I can come up with is Telling certain people what is happening and why. Tell them you have been seizure free and your neurologist wants you off meds duging your pregnancy

Cool in some ways but in other way not so cool.If the neurologist thinks it is time to wean you off meds that is the cool part. Weaning someone off meds is great. The reason weaning is done is because many people never have to take them again. Others that have not had seizures but have been seizure free slowly weaning them off if they have one the neurologist can reise the medication to the point it was before that seizure. I know my cousin had gone years and they were thrying to get her off but she had one and the dosage was raised back to the last dosage before the seizure. She never had another seizure.Not taking medications while pregnent is good thinking but mot everybody can do it. But they can get put on medications that has fewer side effects and the neurologists know those medications.Now the part that is not so cool is not telling anybody. That paperwork you filled out that is in your files in the HR department does not help if you have a seizure on the floor of your office. If you had a grand mal seizure in your office how long would it take to get that information from th back of your file in the HR department. Understand that the first people that will be called is the EMT's  Does 911 have access to your files in HR. For some people it is a matter of minutes befor they are in trouble.Do the people around you kow that the information is in your files? Do your friends know what to do is you ever had a seizure? You can't drive when being tapered off meds because you might have a seizure. So people will need to know what to do if you have one. I too am personal. I don't tell everybody about my epilepsy. But I told the project manager. I also told certain people that were around me. They were supportive. As for sharing it with people at work... I have had people come up and ask me questions about epilepsy. When I asked where they found out I had it they said from Brian (progect manager) I was to answer any questions for this person if I could. It seems people have had friends or family members diagnosed with epilepsy. So yes informing people can be helpful to many people who have questions that they don't know where to get answers. Just like this forum.No you don't want them to think you had a DUI. If they drive by your house they can see your car. So they would know it wasn't repossessed. Either of those would be lies. The only thing I can come up with is Telling certain people what is happening and why. Tell them you have been seizure free and your neurologist wants you off meds duging your pregnancy

Cool in some ways but in other way not so cool.If the neurologist thinks it is time to wean you off meds that is the cool part. Weaning someone off meds is great. The reason weaning is done is because many people never have to take them again. Others that have not had seizures but have been seizure free slowly weaning them off if they have one the neurologist can reise the medication to the point it was before that seizure. I know my cousin had gone years and they were thrying to get her off but she had one and the dosage was raised back to the last dosage before the seizure. She never had another seizure.Not taking medications while pregnent is good thinking but mot everybody can do it. But they can get put on medications that has fewer side effects and the neurologists know those medications.Now the part that is not so cool is not telling anybody. That paperwork you filled out that is in your files in the HR department does not help if you have a seizure on the floor of your office. If you had a grand mal seizure in your office how long would it take to get that information from th back of your file in the HR department. Understand that the first people that will be called is the EMT's Does 911 have access to your files in HR. For some people it is a matter of minutes befor they are in trouble.Do the people around you kow that the information is in your files? Do your friends know what to do is you ever had a seizure? You can't drive when being tapered off meds because you might have a seizure. So people will need to know what to do if you have one. I too am personal. I don't tell everybody about my epilepsy. But I told the project manager. I also told certain people that were around me. They were supportive. As for sharing it with people at work... I have had people come up and ask me questions about epilepsy. When I asked where they found out I had it they said from Brian (progect manager) I was to answer any questions for this person if I could. It seems people have had friends or family members diagnosed with epilepsy. So yes informing people can be helpful to many people who have questions that they don't know where to get answers. Just like this forum.No you don't want them to think you had a DUI. If they drive by your house they can see your car. So they would know it wasn't repossessed. Either of those would be lies. The only thing I can come up with is Telling certain people what is happening and why. Tell them you have been seizure free and your neurologist wants you off meds duging your pregnancy

what to tell co-workers

Comments

Cool in some ways but in

Submitted by just_joe on Sun, 2016-09-11 - 12:23

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