Hoping someone will understand me

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I have epilepsy. If I forgot to take my medicine I have grand mal seizures. However what I have far more are conscious, violent spasms, and slight tremors. It gets especially bad if I increase the dosage of my medication, or take my medication too early in the day, or change my type of medicine. In other words, if I take too little I have grand mal seizures, but if I’m in flux I have spasms. Because of my tremors I have been unable to live freely. I’ve lost jobs, lost friends, and so much more. Even though my medicine saves my life, I also regard it like poison. Any time I have a serious spasm it’s moments (less than a minute) after I’ve had my medication. Despite over a decade of telling various neurologists, doctors, and loved ones how much I suffer from my spasms they have said it’s far less serious than my seizures. I’m in despair. Part of me hates taking my medicine, and waiting to see if it’ll completely ruin my day. My family just said I don’t care about them because I won’t do something as simple as take my medicine. They say I could die if I didn’t take my medicine and I know it’s true. It’s far less likely I’ll suffer damage from a conscious seizure I have marginal control over, as opposed to a total blackout. I tell them I’m in agony due to the tremors. I tell them that no doctor or neurologist will believe me. I tell them it’s worse than my seizure. They tell me to grow up. And I’ve been told that by every person for over a decade. I’ve been screaming about my conscious shaking, and every time I take a new neurologist who looks at me like a sinner and brushes aside my tremors it’s taken a piece out of me. I don’t know what to do. I just wish someone would believe me.

Comments

Hi,I had epilepsy for 14 long

Submitted by Ravistuart on Sun, 2017-07-02 - 04:57

Hi,I had epilepsy for 14 long years and in Oct 2007 had the right temporal lebactomy surgery. If this what Iam writing will encourage you.I fully understand what you are going through. I had to give up my airline pilot, architectural and an acting careers. The people around you should realize it is not fully you who is responsible in the situation. The frustration, irritation, mood swings, depression, feelings being neglected, very disconnected with the world and everything comes with it as a package. Not wanting to take the medication knowing the consequences if you miss it, is not what you really want to do. You are so very tired of the medication, being told to take it all the time makes one want to challenge by not taking it. I knew I was always loved and cared, but the moment I used to get asked if I took the medication irritate me. It was like a forced marriage relationship with the medication I wanted to walk out from sort of speak. I know there would be battles going inside you. Why has this happened to me, I am capable of doing more better things and so on. Sometimes the medications do interact against each other and that could also be the factor. You will not realize it, but the person next to you who is with you most of the time will know when this happens.They have to be very tolerant. When that person feels that tension should not force you take medication at that time but some minutes later when you are out of that tense moment. I assure you when you are offered the medication after that tense moment, you will have no issues taking it.Get your loved ones to read this comment of mine.

Dear KallinyI just feel so

Submitted by mariet_5926de5df37df on Mon, 2017-07-03 - 11:02

Dear KallinyI just feel so much for you, like a soul in torment with this awful situation. I am new to epilepsy and don't get the grand mals that you and others suffer. From what little I have experienced I get the feeling that it is very difficult for people on the outside (i.e. not in our bodies) to understand that what to them may seem likely very mild or nothing is actually very shocking and distressful and /or painful. I mean its ridiculous but the worst experiences I have had have been at Accident and Emergency, so if even the professionals have go no understanding then well?? (also today at an assessment centre I had cluster seizures and was on the floor frozen, but not deaf and had to suffer the loud banter between staff and paramedics-despite in my speaking moment telling them that noise was a problem) I also feel that consultants are very narrow in their outlook, as a type of academic they just look at a vary narrow part of their field and don't seem to have a clue or perhaps be interested on what life is like day to day. The other thing I am coming to realise having just been made housebound by Lamotrigine-is that it is all hit and miss and a bit of a very new and unknown science. They can only try, but in doing so it would seem sensible to actually listen to what the patient says-rare?I had to argue assertively with my GP over the phone why it wasn't a good idea to put up my dosage and I succeeded because he was prepared to listen because I provided evidence, stats how many seizure I had before the drug (1/day) and how many I was having now (10/day). This caused him to agree and to ring the neuro who has changed the meds.So I know its a bind and you might be doing this already and may need to ask those close to you to help, could you write what happens when and after doing what. Just a series of hand drawn columns will do, headed: date, time your mood, what you did etc etc. Then you can quote these details. I summarise in the final column with a key code e.g SZ=seizure etc. Then you can scan the sheets quickly to collect stats. A real pain, but might help others see you motivated and provide you with hard evidence to back up what you are saying. The other aspect is it might help to regain some control sense of being able to do something proactive.I am lucky in one sense as live on my own and my family are very hands off unless I need help and they are there like a shot. I can get a little pressure but it goes with the territory I suppose of a difficult situation-I don't know?. Also I feel very guilty the way I stopped my mother doing x,y,z but realise now I was terrified and overwhelmed with her condition (not epilepsy). Sometimes people who care and love others so much want to be protective and yet feel very helpless.Are there any local epilepsy groups you can plug into, or any interest groups online or something to give you a break from epilepsy this and that everyday. And the stress of all this can't be helping. So hard and just feels life changing so much an so suddenly.Thinking of you, I hope this doesn't seem too trite just thinking off the top of my head as I don't like people suffering. Sending you big hugs from UK.Also Ravi's post so frustrating what he has had to give up, but a very wise guy.

Dear KallinyI just feel so much for you, like a soul in torment with this awful situation. I am new to epilepsy and don't get the grand mals that you and others suffer. From what little I have experienced I get the feeling that it is very difficult for people on the outside (i.e. not in our bodies) to understand that what to them may seem likely very mild or nothing is actually very shocking and distressful and /or painful. I mean its ridiculous but the worst experiences I have had have been at Accident and Emergency, so if even the professionals have go no understanding then well?? (also today at an assessment centre I had cluster seizures and was on the floor frozen, but not deaf and had to suffer the loud banter between staff and paramedics-despite in my speaking moment telling them that noise was a problem) I also feel that consultants are very narrow in their outlook, as a type of academic they just look at a vary narrow part of their field and don't seem to have a clue or perhaps be interested on what life is like day to day. The other thing I am coming to realise having just been made housebound by Lamotrigine-is that it is all  hit and miss and a bit of a very new and unknown science. They can only try, but in doing so it would seem sensible to actually listen to what the patient says-rare?I had to argue assertively with my GP over the phone why it wasn't a good idea to put up my dosage and I succeeded because he was prepared to listen because I provided evidence, stats how many seizure I had before the drug (1/day) and how many I was having now (10/day). This caused him to agree and to ring the neuro who has changed the meds.So I know its a bind and you might be doing this already and may need to ask those close to you to help, could you write what happens when and after doing what. Just a series of hand drawn columns will do, headed: date, time your mood, what you did etc etc. Then you can quote these details. I summarise in the final column with a key code e.g SZ=seizure etc. Then you can scan the sheets quickly to collect stats. A real pain, but might help others see you motivated and provide you with hard evidence to back up what you are saying. The other aspect is it might help to regain some control sense of being able to do something proactive.I am lucky in one sense as live on my own and my family are very hands off unless I need help and they are there like a shot. I can get a little pressure but it goes with the territory I suppose of a difficult situation-I don't know?. Also I feel very guilty the way I stopped my mother doing x,y,z but realise now I was terrified and overwhelmed with her condition (not epilepsy). Sometimes people who care and love others so much want to be protective and yet feel very helpless.Are there any local epilepsy groups you can plug into, or any interest groups online or something to give you a break from epilepsy this and that everyday. And the stress of all this can't be helping. So hard and just feels life changing so much an so suddenly.Thinking of you, I hope this doesn't seem too trite just thinking off the top of my head as I don't like people suffering. Sending you big hugs from UK.Also Ravi's post so frustrating what he has had to give up, but a very wise guy.

Dear KallinyI just feel so much for you, like a soul in torment with this awful situation. I am new to epilepsy and don't get the grand mals that you and others suffer. From what little I have experienced I get the feeling that it is very difficult for people on the outside (i.e. not in our bodies) to understand that what to them may seem likely very mild or nothing is actually very shocking and distressful and /or painful. I mean its ridiculous but the worst experiences I have had have been at Accident and Emergency, so if even the professionals have go no understanding then well?? (also today at an assessment centre I had cluster seizures and was on the floor frozen, but not deaf and had to suffer the loud banter between staff and paramedics-despite in my speaking moment telling them that noise was a problem) I also feel that consultants are very narrow in their outlook, as a type of academic they just look at a vary narrow part of their field and don't seem to have a clue or perhaps be interested on what life is like day to day. The other thing I am coming to realise having just been made housebound by Lamotrigine-is that it is all hit and miss and a bit of a very new and unknown science. They can only try, but in doing so it would seem sensible to actually listen to what the patient says-rare?I had to argue assertively with my GP over the phone why it wasn't a good idea to put up my dosage and I succeeded because he was prepared to listen because I provided evidence, stats how many seizure I had before the drug (1/day) and how many I was having now (10/day). This caused him to agree and to ring the neuro who has changed the meds.So I know its a bind and you might be doing this already and may need to ask those close to you to help, could you write what happens when and after doing what. Just a series of hand drawn columns will do, headed: date, time your mood, what you did etc etc. Then you can quote these details. I summarise in the final column with a key code e.g SZ=seizure etc. Then you can scan the sheets quickly to collect stats. A real pain, but might help others see you motivated and provide you with hard evidence to back up what you are saying. The other aspect is it might help to regain some control sense of being able to do something proactive.I am lucky in one sense as live on my own and my family are very hands off unless I need help and they are there like a shot. I can get a little pressure but it goes with the territory I suppose of a difficult situation-I don't know?. Also I feel very guilty the way I stopped my mother doing x,y,z but realise now I was terrified and overwhelmed with her condition (not epilepsy). Sometimes people who care and love others so much want to be protective and yet feel very helpless.Are there any local epilepsy groups you can plug into, or any interest groups online or something to give you a break from epilepsy this and that everyday. And the stress of all this can't be helping. So hard and just feels life changing so much an so suddenly.Thinking of you, I hope this doesn't seem too trite just thinking off the top of my head as I don't like people suffering. Sending you big hugs from UK.Also Ravi's post so frustrating what he has had to give up, but a very wise guy.

I've never heard it being the

Submitted by whatitisepilepsy on Wed, 2017-07-19 - 20:06

I've never heard it being the same for anyone, our body are so different. You talk to anybody with it, they will have at least one thing you or I deal with. Do your best to take the meds, and talk to the doctor about trying something new. Good luck to you, I will Pray for you. May I suggest talking to your doctor about a med called Lamotrging. I'm also taking VIMPACT with that, and I have the most control I've ever had. We are trying to wing off the vimpact. If that dose not work, I went a whole year without arua or seizures taking a martial arts class. It was not so much what I learned, the over 100 jumping jack, stretching, working my body at least 5 days a week. You have heard it before," use it or lose it". Exercise make sense. As soon as I stopped everything came back with in a week. Good luck, life with out seizures can be amazing, always try new things don't let it win.