I am so tired of friends and family telling me if I forget it is my medicaton.I had another med. added last week. Phenobarbital.I a'm know taking four medicatoins for my seizures. I was taking five but one effected my pancreas, that would be Depakote. I was in the hospital five days for that. They also had started me on Tegratol and took me off that in the hospital. I have on an average 3-5 seizures a week. Well yesterday my husband and I were at some friends for an early Thankgiving dinner. There was a silly mix up and my friend explained it was my seizure medications. Needless to say I was very hurt and mad at her. I will say, I have a note book to write things down and sometimes I forget to write but for now on I will not wait to the end of the night to do it. I have had seizures since 1997. they have only been poorly controlled by medications since Nov. of 2001. I am now taking Keppra 2500 mgs, Dilantin 700m gs , Klonopin 1.5mgs and now the Phenobarbital 64.8mgs.I guess I just needed to vent with someone who can understand.If anyone can give me some ideas on how to deal with people about my seizures and medication in a nice way I would appreciate it. Thanks for reading this.//////Mary
Hi Mary. You are on alot of meds, but you have to figure out what meds work for you to help control your seizures. I have learned that it is very easy for someone else to say you don't need all those meds. People like that are usually the same people who do not suffer from any kind of disease or disorder. Maybe this is being said out of ignorance, in that I mean they just don't understand why, but care and think you don't need all the meds. I am 24 and am on 4 meds, Keppra twice a day, Dicyclomine 3 times a day, aciphex once a day and estrostep once a day. I wish you the best and take care. Tracy
Tracy, Thank you for listening to me. Just to know someone understands is a big help. I wish you the best also.God Bless you. Mary
try2bhappy, I am so sorry that you and a friend had a misunderstanding! You are on a lot of meds!! Hoping you can figure out what works best and the neuro can understand what is going on....It is so hard to take so many and still not have the control!
One way I have had some people understand my kid's seizures is to ask them if they have ever taken a nighttime cold me or Tylenol PM, Benedryl, something like that. HOW did they function on that med? This is how S feels after a seizure when PI. He is tired, brain is foggy, kind of like that medicated feeling. This analogy might work on explaining your meds too. You can still do things, but it may take extra time or effort when meds are higher. The difference I emphasize is that YOUR meds are not a short term thing. The other things I mention, you have somewhat of a choice with taking. It is short term so extra sleep will help....
I don't know if that helped at all. Mostly I wanted to chime in and say, HANG IN THERE!! It is tough, but you are strong....Hang in there.
One way I have had some people understand my kid's seizures is to ask them if they have ever taken a nighttime cold me or Tylenol PM, Benedryl, something like that. HOW did they function on that med? This is how S feels after a seizure when PI. He is tired, brain is foggy, kind of like that medicated feeling. This analogy might work on explaining your meds too. You can still do things, but it may take extra time or effort when meds are higher. The difference I emphasize is that YOUR meds are not a short term thing. The other things I mention, you have somewhat of a choice with taking. It is short term so extra sleep will help....
I don't know if that helped at all. Mostly I wanted to chime in and say, HANG IN THERE!! It is tough, but you are strong....Hang in there.
Mary,
Unfortunately, There are still lots of people out out there who still think that if you have epilepsy, you're possessed by satin.
I am also on pheonobarb and dilantin ( 325mg-dilantin/day, 130mg-pheonobarb/day) (also 3,000mg Mesesol/day for colitis)
This effected my social life big time and causes depression.
It even effected my personal life.
The side affects are numerous.
My own family was embarrassed to be seen with me. It was like being with a drunk. I just had to learn to deal with it.
In a lot of cases stress is a major trigger for epilepsy.
Randy (Ontario, Canada)
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
stopped almost all meds for a couple of weeks. now, not stabilizing even w/doctors' advice on taking meds again. now having more temporal lobe seizures than ever in my life. been under some serious stress. was in e-room last week when i couldn't stop seizing/cycling, and eeg here showed seizures. neuro. wants me to go back to hospital for 5 days to have 24-hour eeg there plus to record on video. don't want to do it. probably won't seize there. too calm. stress makes me both sieze/cycle. .about ready to just give up. know what you mean about too many meds.
Linda
Linda
Randy thanks for your reply. As you probably know that having someone eles that has and goes what you go through is so helpful to talk to. My husband is Great but he is Bipolar so I know he can only take so much. But where we live in Michigan he is in progam called Act.It is a wonderful thing for him . Someone comes right to our house and sees him for support. His Doctor tells me not to worry He can handle my seizures. My mother calls tham fits. My sisters exclude me from things they do together, that really hurts.Of all the people I know I can count on one hand who I feel safe going in public with.I also have IBS which when that flares up my seizures increase to like 6-9 a week,I usuallyhave2-5 seizures a week. I really am afraid of the Phenobarbital.Thanks for listening to me .It really helps. When is the E chat room?Or does know one use it?
I have noticed something when I read on this for epilelpsy alot of people have colitis,crohns or some type of IBS. When I was married to my ex-husband The DR. told me I had crohns desease.That was before I had seizures.When we divorced the flare ups were few and far between. Now stress(bad stress) willflare it up. Has anyone else noticed this?//Mary
Mary,
My situation is very similar to yours. I also have Ulcerative Colitis and my 18 year old son was diagnosed with bipolar/manic depression and I find that a very hard condition to live with being a parent because his mind hasn't progressed beond about age 12 and it frustrates the hell out of me-raising my stress level.
Epilepsy and ulcerative colitis are both stress related and he purposely tries to get on my nerves.
My big concern is the negative effects of long term use of meds.
Randy (Ontario)
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Randy
I had two boys it's the nature of the beast for boys to test your stress level. My youngest is 25., married with 3 kids all under the age of five. That boy still can stress me out.My oldest son committed suicide 6 years ago when he was 20. About 6 months before he did ,he asked me if Bipolar ran in our family. I really did not know. He had gone through a drug rehab. Was clean for 1and a half years. his father and I were divorced then. I had not remarried yet. Come to find out on my dad's side of the family there are a few Aunts, Uncles, and cousins who were or are Bipolar. That and a song he wanted me to listen to about moms, as I think back were the only signs that he gave that something was not right. I can beat myself up about it. Not finding out if he was Bipolar. Maybe he would still be alive. But you can never go back. But God I never thought anything could hurt so much. The note he left was very short. He said he hit rock bottom and wanted to go to the other side.But you did not want to he all that. My husband was diagnoised 17 years with Bipolar. We might be a bit older then you. I did not learn until he was hospitalised that so was his dad. He had a bit of depression last night. He use to be a pilot and a aviation mech. but do to his Bipolar he can't do either. So take away a mans lively hood and that really hurts. I found giving him my undivived attention helps when he is like this.I have a cousin hows son is Bipolar. He looks normal so she thinks he is lazy.She has MS.It's like if you can't see something wrong then it is not there. I am new to using a commuter so if you could tell me where to go on this to write long responses that would realy help.This is for sure not a Guick reply Thanks.///Mary
I had two boys it's the nature of the beast for boys to test your stress level. My youngest is 25., married with 3 kids all under the age of five. That boy still can stress me out.My oldest son committed suicide 6 years ago when he was 20. About 6 months before he did ,he asked me if Bipolar ran in our family. I really did not know. He had gone through a drug rehab. Was clean for 1and a half years. his father and I were divorced then. I had not remarried yet. Come to find out on my dad's side of the family there are a few Aunts, Uncles, and cousins who were or are Bipolar. That and a song he wanted me to listen to about moms, as I think back were the only signs that he gave that something was not right. I can beat myself up about it. Not finding out if he was Bipolar. Maybe he would still be alive. But you can never go back. But God I never thought anything could hurt so much. The note he left was very short. He said he hit rock bottom and wanted to go to the other side.But you did not want to he all that. My husband was diagnoised 17 years with Bipolar. We might be a bit older then you. I did not learn until he was hospitalised that so was his dad. He had a bit of depression last night. He use to be a pilot and a aviation mech. but do to his Bipolar he can't do either. So take away a mans lively hood and that really hurts. I found giving him my undivived attention helps when he is like this.I have a cousin hows son is Bipolar. He looks normal so she thinks he is lazy.She has MS.It's like if you can't see something wrong then it is not there. I am new to using a commuter so if you could tell me where to go on this to write long responses that would realy help.This is for sure not a Guick reply Thanks.///Mary
Mary,
WOW,
I'm really sorry to hear about your son.
That explains the stress you must be carrying around.
I don't know what else to say.
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Randy I did not tell you about my son for you to fell sorry for me. I want to be possitive towards people. I know when I mention my son who died and the way he died people do not know what to say. I'm sorry I put you in that position.I just wanted to say about how he asked me if Bipolar ran in our family. I am usually a very positive person.I know my son is in Heaven and my DAD and STEPDAD have kicked his butt. I am vey happy with our 3 grandchildren. We do have a lot in common. We have Epilepsy, our intestens can reak havoc on us,and we both have dear loved family members who are Bipolar. How can to people from different Countries have such tings in common?I pray I did not give you the idea about suicide for you son because of mine asking about being Bipolar From what I have heard in the past 6 years my son had some heavy problems. But that is from his friends so I take it with a grain of salt. Just be patient with son.Being Bipolar is no piece of cake, niether is Epilepsy or IBS.Take Care///MAry
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Randy off to a good Happy start. It is Tahnksgiving morning . We have had our first snow fall. Everything looks so clean and white. I am not taking the Phenobabital again until I talk to my Neuro. My intestines have flared up. My family doctor called me in some Donnantol which has belladonna/phenobarb in it. I had them call it in a different Drug store. I had a coupon for 20 dollars there if I got a script filled there. My husband thought I should not be going to a different drug store. But it's a woman thing 20 dollares free ,xmas coming up how could I pass. I even called where I get my meds always filled. The Pharmasist said it would not interact with my other meds.Well I got toxic on it . I sounded like a drunk talking. I was walking ok though. But my memory was not very good. My Neuro. is great. they do have a many in their pratice not just one.I have tried so many meds. for seizures.My doctor told me my seusurses were caused by my ex-husband. Scar tissue shiftted a few years later that started my seizures.(my ex- husband could get very violent at times). It has only been the last 3 years that my seisures are weekly or more. I am so sorry about your sister.that must hurt you alot.It is just a waste of a human. I don't know your mother, but I do know there were NEURO'S back then. Some times a mother love her children so much that denial is better then realality. But for your sister that went way to far.IS there any way (in your buzy life) you could get guardinship over her ?Take here to some Speicialists and have her with the right doctors and meds.? Take care of yourself. Your Friend///Mary
Hi Mary.. hope you are having a healthy and happy thanksgiving. That is great that that program comes to your home for your hubby, now ask them if they have any friends that do the same for Epilepsy :) LOL That would be too awsome huh!! I also have only 3-4 people I am comfortable going out with. Some of them make me feel safe and I don't worry. Other friends I can't say the same for. I am so lucky to have my boyfriend. he is great with all of my ailments. I have IBS and an ULCER so add me to the club. I recently have had blood in my stool so I have to get an "exam" from my gastro. he is on vaca till next week. My appointment is dec 4 I am here for you and alot of us understand your problems. That is why it is so great here cause we all share a common ground that you can't share with anyone in your regular daily life. Take care and have a happy!!
Hi Mary
Happy Thanksgiving.
I'm so sorry to hear that your intestines have flared, what a time for that to happen.
I don't understand, how can your seizures be caused by your ex-husband, was it the stress that caused permenant damage or something else?
Puppylove5, You're so lucky to have an understanding boyfriend and a few close friends that you can trust because you really need them at times like this and when your condition flares-up or you have a seizure.
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Hi Randy, I do feel thankful that I have a few friends and my parents. I hope you are having a very happy thanksgiving. Feel good & take care, Tracy
Tracy,
Thanx for your good will wishes however, it's not Thanksgiving here in Canada. We had ours in October.
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
Shucks that is right I knew that!! Well have a great day anyhow :) Tracy
Randy,
My exhusband could be a very violent man at times. He would take his anger out on me most of the time. The home we owned before our divorce was built on a cement slab. Of course the floor had padding and carpeting.He was,and still is a very big man. One day when I came home from work He had gotten the mail.I had worked for Hospice at that time and we were reimbursed for our mileage.Well I thought this works,I get seperate checks from Hospice for gas and then my regular pay check.Upon him getting the mail he read the Shell Credit card bill. I admitt it that was very sneaky of me ,but were talking 30-70- dollars a month. Like a stupid woman I would give him my regular pay checks. That day when I got home he could of chosen to talk about it or leave for a while, but he dicided to destroy my piano our china cabnet,dinning room furniture But that was not enough.He preceded to throw me on the floor and bang my head repeatedly on the floor . I knew I was going to die. I mean really die . Hence, comes the closed head injury and scar tissue shiftting and the begining of my seizures. If you ask why did I not leave he had taken the car keys. Any place to hide in the house he would of knocked down doors and walls. He was so crazied I was affraid to run out the door to my neighbors,he would was so he was so out of controll he could of hurt anyone. If only he would of said he was mad and left for a while I wouold not have seizures now. I still have have nightmeres about that day. Even if he would of left we would still have been divorced. So that is why I say I have seizures because of my Ex.not stress.Altough it is very important to sleep enough and learn to handle stress in a possitive way along w/meds when you have seizures. ////P.S.the back of my head where he beat it on the floor is still very tender and sore, that was 10 yrs ago. I thank God more then once a day for my present husband.///Mary
My exhusband could be a very violent man at times. He would take his anger out on me most of the time. The home we owned before our divorce was built on a cement slab. Of course the floor had padding and carpeting.He was,and still is a very big man. One day when I came home from work He had gotten the mail.I had worked for Hospice at that time and we were reimbursed for our mileage.Well I thought this works,I get seperate checks from Hospice for gas and then my regular pay check.Upon him getting the mail he read the Shell Credit card bill. I admitt it that was very sneaky of me ,but were talking 30-70- dollars a month. Like a stupid woman I would give him my regular pay checks. That day when I got home he could of chosen to talk about it or leave for a while, but he dicided to destroy my piano our china cabnet,dinning room furniture But that was not enough.He preceded to throw me on the floor and bang my head repeatedly on the floor . I knew I was going to die. I mean really die . Hence, comes the closed head injury and scar tissue shiftting and the begining of my seizures. If you ask why did I not leave he had taken the car keys. Any place to hide in the house he would of knocked down doors and walls. He was so crazied I was affraid to run out the door to my neighbors,he would was so he was so out of controll he could of hurt anyone. If only he would of said he was mad and left for a while I wouold not have seizures now. I still have have nightmeres about that day. Even if he would of left we would still have been divorced. So that is why I say I have seizures because of my Ex.not stress.Altough it is very important to sleep enough and learn to handle stress in a possitive way along w/meds when you have seizures. ////P.S.the back of my head where he beat it on the floor is still very tender and sore, that was 10 yrs ago. I thank God more then once a day for my present husband.///Mary