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hazel70459
hazel70459

Hello , Just had a copy of my discharge notes summary , there in black and white says I have NEAD and tells my Doctor I will benefit from having  neuropsychiatry input. I accept all of this , Just interested if any one else has seen one and does it help reduce them?. I also have fibromyalgia and silent migraines. would have to have two symptoms that dont seem to be taken seriously well thats what it feels like, as if you want to put yourself through pain and seizures I am not an attention seeker." Its not all about me darlings ha ha " rather be able to return back to my job and climb the stairs without stopping. Happy days smile

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  • mary50992
    mary50992 hazel70459

    Posted

    Dear Hazel,

       Here goes. NEAD is a label that doctors use to swipe those who have a form of seizure under the rug of all in  your head. Doctors may feel they are god like but they do not know the whole why of the human element. I suffer from seizures, tonic and clonic. I have had the full range of seizures before. I was in hospital. Tested and on four seizure meds. The  side effects are the worst of the worst. I am not on these meds any more. I deal with the seizures, endure them. I see a aura of the colour green  and this allows me to get myself into a safe position before the seizure happens. I wish with all my heart that theser will not happen but they do. I can't fly any more because I have seizure upon lift off and landing. Being carried off a plane on a sky chair is not what I consider a part of a vacation. There no help out there sorry. Recalling bad memories of ones past life wouldn't help because everyone on this planet has them. The past is the past. We learn from it. We gain insight . So talking to a doctor is just repeating them over and over like a broken record. There are thousands upon thousands of peopl around this world that suffer as we do. Deal with them and hope you are safe when they happen. My family doctor doesn't know what to do with me because I don't talk about the seizures any more. She only can do the usually blood work etc. I 'm done with doctors "all in your head" attitude. It is what it is!      

    • hazel70459
      hazel70459 mary50992

      Posted

      Thank you Mary for taking the time to reply to me , it means alot. I had a copy of a discharge summary sent to me as I have been in hospital again this one said, Nead ( some of these are catamenial epilepsy) so I saw a new Doctor female who deals with womens health, such a pain in the  b** when you have to start explaining all over again. I have asked for the depo injection as I was adviced it will help balance my hormones, I have said this for nearly 7 years that its connected to periods. she agreed to try depo then marina coil . I am not stressed or depressed so dont feel nurophychiatriy is what i need. yes I did have a bad childhood but I have had cbt two years ago for that and it was great , but now i am stonger i feel i am being patronised and i have expressed that, I am a bubbly person with great energy when i needed the help i went for it. I swear if i had a spot on my b*m they would put it down to anxiety or depession. sometimes you dont feel your listend to. I asked when I could return to work she said i dont see why you cant go back ( a previous doctor had sighned me off for a month) I asked her what about seizures she looked puzzled then  I sugested she look at my noteseek !!!!!. Then she said right i see and put me off for two weeks. I want to go back to work as i miss it but want to see if depo will ease off seizures. I am the same as you they dont bother me and i just live with them as my family do. just a part of my makeup.cheesygrin good to get that off my chest.
  • mary50992
    mary50992 hazel70459

    Posted

    Dear Hazel,

        I like you. Seizures happen to the best of us. I love who I am. I'm a health care aide  working in a city of Toronto Long Term Care Nursing Home. I have been working there for more than 25 years. I take care of 9 residents. I'm good at my job. Once I was label as Nead, doctors avoided me. My family doctor can't even ask me "how's it going"? Takes care of only my other medical needs . She 's uncomfortable with it. My doctor cried , I mean real tears when she once asked me if I had experience any resent " bad thing" in my life. Will is seeing your co-worker hit by a car only inches away from you count? We were walking together across the lights when a car made a left hand turn , missing me but hitting her. So there was my doctor on her knees in front of me crying. Who need's help? My friend has come along way with her recovery. She's even back at work. A true hero. I'm happy to hear you are seeking help. I have been there myself. My words have fallen on deaf ears. You know your own  body. I 'm back at work. I worry about a possible seizure at work. So far so good. I get a warning, a aora before a seizure. I see the colour lime green. I get myself into a safe position, place.

         Hazel there are so many people around this world who suffer like us every day. Why it has happen to us only Almight God knows. I keep this in mind. I have prayed alot to our creator for endurance.  Thank-you for replying.

  • mary50992
    mary50992 hazel70459

    Posted

    Dear Hazel,

       Hope you are fine. I have a feeling we are alone on this forum.

       A year ago my doctor sent me for a heart scan. The contrast dye was iodine. I am severly allergic to iodine. I had no ideal about iodine as a contrast material. After the test I had my first seizure in my life and than a second one only moments later. I was in a state of confussion. Had to take a taxi home with my daughter who had come with me. At home I had more seizures. My daughter called a ambulance. The doctors believed I may of had a stroke. I was out of it. My daughter consented to a CT scan. More iodine. The doctors told her the risk was of importance. No sigh of stroke but the seizure got worst. My daughter endured the night with me. The following days I ended up in the hospital. Another CT scan and more iodine. My poor brain was a total mess. I was so out of it with none stop seizures, day and night. Saw my doctor and she said it was Nead. Went for a EEG. Some seizure activity but so slight to impress the doctor. I had seizures everywhere. I was amitted to hospital and put on seizure meds. They stop the seizures for awhile but than they had to be increased in strenght. I was so mentally exhausted and angry. I was treated like I was out of my mind.

       I was later sent to another hospital. A seizure clinic. A joke! The woman next to me in the room was so ill with seizures (Nead such a  easy label to put on someone who is suffering so much ). I don't ring for the nurse , its not my way but she was on the bell so much. I really felt for her. One time after a seizure the nurse put her on the toilet and left her by her self. She fell flat on her face. This same nurse put a face cloth over my face when I was having a seizure. I told him that I know his kind. I was label as Nead. So there you go. Good news. I haven't had a seizure for two weeks. One month without a seizure would be great. Email soon and tell me more about your seizure.  It helps to know because I know I'm not alone with this suffering.Hazel thanks. Mary. 

    • hazel70459
      hazel70459 mary50992

      Posted

      Mary hello , Thankyou for keeping in touch. I like you have been in and out of hospital with this , earlier days they said id had a TIA and i repeatedly had them over the years, I couldnt move my left side or speak properly for a day or two was told to take an Asprin a day. I had one big seizure at work and same affects speech and weak left side, then i had nothing for around three years until now. I have had a cluster of them but now they say its Catamenial epilepsy to do with my hormones. I could have seizures for about a few minuets or on and off for two hours. Its exausting. I have been off work with this since 22 dec and now want to return to work, my doctor said that the marina coil could help balance my hormones but dont build my hopes up, she also said just have to live with it!!!!!!. I really want to start back at work , climbing the walls i love to be around people, but my boss is reluctant i feel every time i mention coming back she says see how i am and see if seizures stop. caught in the middle really, Doctor said just have to talk with my boss and if it happens as i get a warning place myself somewhere safe and get on with it. I work as a waitress in a busy little deli / cafe, cant see that happening somehow ha ha .I also have fibromyalgia another thing thats not taken seriously. I have had a couple of good days , but experiencing alot of pain in lower back and hips, brings me to my knees. Feel like i am fighting my body. heads like come on stop messing about you need to get back to work earn money ect and my body is saying look i am knackard. I am going to try swimming again and maybe yoga well thats my plan. You are not alone with this mary Oh why did she put a face cloth on your face? whats that about?. When i was in hospital the time before, I was having a seizure one Doctor said to me come on stop this hazel  , the thing is i can hear but i cant physicaly reply as my muscles are so tight, jaw tightens aswell as body. he kept pocking me and shouting. after i had my seizure i said to him i can hear you just cant reply, and if i could stop on comand i would.  pocking me didnt realy help. you wonder what goes through peoples mind sometimes , i mean are they thick or what. i have gone on enough, its just good to talk to someone who understands. hey good news about seizures fingers crossed for you. i dont get any when i have my monthly just the build up towards it. bye for now.biggrin
  • mary50992
    mary50992 hazel70459

    Posted

    Dear Hazel,

       Thank-you for your reply. I'm off work today. When I was in hospital a nurse yelled at me during a seizure "stop it, Mary". I also could not reply but if I could I would of given her a mouth full. I have had many different kinds of seizures. Now I have tonic which lead into clonic and I am wiped out for at least two days. Unable to go to work.My muscles tighten up against my body and my arms curle up under my chin. My hands curle back wards, touching each other. My fingers tighten close. It is very painful. My legs draw up which is also painful. My facial muscles become disfigured. My eye brows  are pulled in all directions. My daughter has a few vidios of my seizures. I feel so sorry for myself when I viewed them. The clonic part is the end but it is terrible. I am out of it . My field of vision is lime green and dark green. I'm in a daze. Everything is unreal. My eyes do not bleak for a long time and a stream of tears run down the sides of my face. I'm not crying. Before I have a seizure my speech becomes like Tazan's, "me Tazan,you Jane". My daughter tells me "mom you are about to have a seizure". Flashing lights, lighting flashes,very bright light and watching Kate  plus Eight are some of my triggers. Lack of a good night sleep doesn't help either. So far no seizures at work. Catamenial epilepsy is that another word for tonic seizures? I'm going to look that up. I have had seizures in front of people in the doctors waiting room. My own family doctor didn't care. I believe she thinks it is  a put on. I don't have time to do that. My life is too busy for that and to tell the truth before the seizures I never could tell you how to perform one.  My seizures are like I am frozen in time. I am so happy so far not to have a seizure this month. I may just take my daughter out to dinner at the end of the month to celeabrate. The nurse who put the face cloth on my face was male. When the woman next to me in the hospital room fell off the toilet face first after having a seizure, I told my daughter to yell in the hallway " she has follen off the toilet". Oh did he come running. More concern if she had broken facial bones.  In short God Almighty knows our sufferings.

       Are we alone on this forum,yes. Once I had a seizure standing up by the kitchen sink, scary. Another time  my daughter call 911 because I didn't even wake up from sleeping and was having full body seizures. The fire men also came. I was put out with a drug sprayed up my nose and carry down  stairs on a stair. I had 7 seizures before they put me out. My daughter tells me these thing. My memory of my seizures is bearly there if not at all. Email me, Hazel. It helps alot.

    • hazel70459
      hazel70459 mary50992

      Posted

      Hello Mary, I think your right , our private forum ha ha . Sounds like you have been through alot. My daughter filmed me , like you i was watching myself on  the screen and i felt bad  at first i didnt want to watch, it was horrible to see myself like that. looked like emily rose being possesed.  I dont remember much after a seizure , time mainly passes without me knowing. its very exausting normaly go into a deep sleep. You had a spray up your nose yuck , I had an anti seizure up my bum eek, as my veins are rubbish and of course i was wearing the biggest pair of knickers. It is hard having to deal with people who just dont get it, I have been through the emotions of frustration and now i let it wash over me. I know my body. How do your family cope with you?. My daughter is 17 and she is really good with me , stays calm. my son is 15 , gets upset but is slowly getting used to me , myself and my daughter showed and talked him through on how to help me , like put me on my side if i start chocking on my tongue. My husband is well a man, panics sometimes runs off ect ect. he just doesnt like it. I am not allowed to drive at the moment , yet i havent been put on any medication to help, apart from the coil which i get fitted tommorow, i will have a spring in my step ha ha. I used to be on Topiramate which helped. Any way thank you , you help alot to. have a good day cheesygrin. we can support each other. can say what you really feel on here and it helps, this way doesnt affect family life. 
  • mary50992
    mary50992 hazel70459

    Posted

    Dear Hazel,

       You are a hoot. You make me smile. My daughter's  name is Charlene and she is my first born. She is now 42 years old. She is wonderful with me when I have seizures. She knows what to do. In fact she can tell when I am about to have  a seizure. When I was at my worst she did not work but stayed by my side. She even slept with me at night. Gave me all my meds. Clean up my diarreah due to the effects of the meds. Stay with me day and night at the hospital. She didn't trust the nurse because she was afraid  I would be abruse by them if she wasn't there. Excuse my spelling errors. One night she wasn't with me and a nasty nurse got mad because my comod chair was in her way so she took it away. When I fell asleep and woke up she had turned my heart monitor off. I needed to go , so I took off the heart leads and took my sorry bottom to the washroom. I walked by her. No reaction. The next morning, the day nurse verbally chewed her out for shuting off the monitor which would of alerted it I had a seizure. I was asked if I turned the monitor off. I said I wouldn't know how. When I had a seizure I was unable to alert anyone. If there was a fire I would surly burn to death. It is a helpless state to be in. No seizure as of yet. My daughter said last night it has been the longest time that I have not had one. Feels good. Two weeks. There are so many emotions when you suffer with seizures ( uncontrol moments ). I have prayed many times to Almighty God. Pouring my heart felt feelings out to him. At times I believed I would always have seizures around the clock. That I no longer had a life to live. The seizures felt like they comsumed my life and I was no longer me , in control. My daughter  has been my stronge hold. Seizure scare people. No one wants to talk about it. My family doctor told me that I should talk with a shrink. Tell him what? That I never had bad things happen in my life...joke. Life is a bowel of cherries with the pits. The past is the past . I deal with the now. I have five children who I love dearly and seven grandchildrean. I try to be a pleasant person to everyone during the day. I'm a happy soul. Thank-you for sharing.  Mary still hanging in and holding tight.

    • hazel70459
      hazel70459 mary50992

      Posted

      Hello Mary, Your daughter sounds an Angel. I am 42 with a body of an 90 year old ha ha, My daughter can tell when i am about to have one, and my husband and son. Ahhh i used to have a Boxer dog called Tyra and she was amazing , she could tell when i was going to have one , I would come round to her licking my face i do miss her. We have a cat now once she did the same i was on the floor and she was washing my hand when i got up she directed me to her food !!!!!!. coming back as a cat. I am the same i had a stressful upbringing because of my dad, wont go into to much but he past away at 43 and it was a relief. I thought i would feel free of him but it carried on through out my life , couple of years ago i felt ready to seek help and had CBT well it was fantastic the things i was told to keep a secret i unleashed and now i feel i can tackle anything, feel strong enough to voice my opinion and grab MY life by the balls and live it. But Doctors instead of taking time to find the actual cause just say " its because of your past". I actually told my Doctor he was talking a load of B***o*ks , he sat up in his chair then ha ha . I know my body , i am incontrol. Well i had the coil fitted , small invasion of privacy ha ha eek. You have to laugh , i said to the doctor " oh dear i have forgotten to shave my legs , then she said she hadnt ither had a laugh, I mean what do you talk about when your privates are in the spot light rolleyes, well she said that it may help with seizures but not sure, she feels i should be put back on meds for seizures. I want to give anything a try. I am happy to, so my question to the doctors was " why on earth would i want to be suffering like this ?"  . I am a positive person. I love to be around people and have a good laugh and at the same time i like my own company , well i am a gemini. Your family sound very caring and you sound very much loved. Thank you for sharing to , you hang on in there Mary. hugs 
    • mary50992
      mary50992 hazel70459

      Posted

      Dear Hazel,

        

         I went to my piano lesson this morning. When I started seizures it became very confussing in how to play the piano any more. I was almost finished my grade 6. I told my piano teacher what was happening and that I couldn't take any more lessons for now. It has been a year since my first seizure and I'm back at my piano lessons. It was like my brain was wiped clean of my knowledge of how to play. I have a new teacher,Suzan. I told her what happen to me. My ablity to play is coming back. It is like everything was lost or hidden away where I could no longer reach. At least I haven't given up. It is hard because I'm of course playing with two hands,reading the music,trying to stay in beat and using the pedal. Alot going on in the brain at the same time. Yestday I heard a talk - you take a walk in a beautiful park and on the way to trip over a big stone and you get hurt. Instead of walk away from it, you pick up the big stone and carry it with you. The stone is heavy. You sleep with it and you carry it where ever you go. The weight of it becomes heavior and heavior. So why do you keep on carrying it around? Will like the bad things that happen in our past we can't let go of and they weigh us down in life. You got hurt by them yes but burden yourself on and on. Live for today and look foreward to tomorrow. Each day has its own badness. It help me. So I had so many seizures and I was label NEAD. I know myself and I love who I am. Life goes on. Hazel, I like you and I can relate. I don't shave my legs in the winter. They look beastly but that's the way Almighty God made us. I hope the the device up your parts does work. My female cats seem to of know that I was unwell with seizures. They would take turns sitting on me. I have three cats. You are right ,"L why on earth would I want to be suffering like this"?I'm closing in on the last week of this month still no seizure. My childhood had it crabpy moments too (excuse my spelling). I was a child what did I know about life? Before my mother died she told me she loved her four sons more than me and was mean to me alot. Said she was sorry. I said to her that she did the best that she could at that time. I miss her. She never wanted a daughter. I do love her. She died from lung cancer. Memory lane.  

          Hazel, I'm seeing my five grandchildren this Saturday. I'm so happy. I love them in a different way than you love your own children. It so wonderful. Nice to hear from you. Mary glued together with crazy glue.

    • hazel70459
      hazel70459 mary50992

      Posted

      Hello Mary, Thats fantastic that you are doing somthing you love playing the piano thats wonderful, good for you getting back into it. Bet your granchildren will love to watch and learn from there nan. brought a tear to my eye reading what you said about carrying a stone , its so true i get it. Hey dont worry about spelling i spell how it sounds always have . What you said about your mother i felt for you , you look to your parents for love guidence and support and safety. I personaly lived in fear of my dad he was an alcoholic died of a brain tumour at 43, my older brother protected me as much as he could. my mum , now this is where i find it a little confusing. he used to beat her up and he had affairs he abused me and yet she stayed with him until he died. I do love her but at the same time i feel if you knew why did you stay.this i cant ask her to this day. But i have to say even though bad things happened in my early life it has made me the person i am today, i stopped the cycle. If any man layed a finger on me his ba**s would be in a vice. and as for my children i just wouldnt stay in a toxic situation. my husband is a big softey thank god and my kids so far are good , i am open with them and honest. wow going down that same lane as you mary ha ha. Life experiance !!!!!. I cant say why your mother said that to you and it must really sting , but that was her issue. Look what you have and i am betting you are the best mum and grandmother to your wonderful five grandchildren , I feel honoured to be comunicating with you mary it takes a strong person to confront there issues. I am a lioness where my family are concerned. Mary i am sending you a big hug.cheesygrin 
    • mary50992
      mary50992 hazel70459

      Posted

      Dear Hazel,

        The computer went crazy when I was typing to you. My email I guess went no where. My last name is Singh but I am a white woman. I marry a Singh and divorce his cheating back side. My mother was French and Irish. My father was British. Here is a shared seizure moment. A few days after my first seizure my work called and told me to get a doctor's note either from my family doctor or the hospital ER. I got on a bus and went to a walk-in clinic. In the waiting room a strange feeling came over me. My head started banging aganist the wall behing me. I dropped my purse, falling on the floor. I was dragged my the doctor and nurse into his office. I had a few more seizures there. A ambulance was called. The parimedics dragged me across the office floor . They were laughing. I got angry and shouted at them. I wasn't speaking English . It shocked me. I keeped yelling at them. I wanted to sleep so badly. I had a bad headach. In the ER when I recovered a doctor said 'why don't you have a glass of wine when you get home. I know I well". I said to him" are you telling me to drink when I get home. You doctor have a problem". He got angry. My daughter had been called by the doctor at the clinic. When she arrived at the ER, I told her what the ER doctor told me what to do. She said  he thinks your drank. We went home. The next day I went back to the hospital with my daughter and we pass him outside. He didn't know me from a hole in the ground. We just laughed our selfs.  In the long run doctor's don't care. You don't fit the peg hole to bad.  Have you any seizure lately. So far so good I haven't. I happy your husband is a good man. I have been a different mother to my children than my mother was to me. Her whole issue is she hated her sister. Thinking her mother loved her sister more than she loved her. What a circle. She said I reminded her of her. Never wanted a girl.  Shame. I love my two daughters dearly and my three sons. I broke the cirle. Sorry about your father. My father was no ideal father either. Tried so many times to rape me. My mother stay with him until she finually had enough. She left with her five kids. Children are helpless. There's one of my secrets from memory lane. No one has a wonderful childhood. We all have something in the closet. I am a lioness too. Talking does help. Take care.

  • mary50992
    mary50992 hazel70459

    Posted

    Dear Hazel,

          There are two people following us here in this forum. Did you that. I hope maybe we will help them some how. Bye.

  • mary50992
    mary50992 hazel70459

    Posted

    Dear Hazel,

     Excuse my typing errors. I'm just tired from work. O.K. bye. Mary

    • hazel70459
      hazel70459 mary50992

      Posted

      Hi Mary, Dont worry about typing errors , I have fat finger syndrome ha ha more so on my phone. I have had a seizure the other night but it wasnt bad, they are alot less now , been feeling good last few days , I have fibro aswell and pain has been very low so i am a happy ladycheesygrin.poop does happen in life and I feel you can only learn and help yourself aswell as others. Dont work to hard. I am back at work next week my boss has been very good. I went in today to say hello felt good to be out alone. I have a medi braclet just incase. My family dont like me going out alone, but hey i am ok if it happens it happens. dont like being cooped up , especially now the weather is getting better. So mary you divorced your cheating husband, good for you why should you put up with that, your worth more. If my husband cheated i would cut his balls off and use them for earings ha ha ha. only joking , I wouldnt stay with him and he knows it.  Well I will have to start dinner soon. so good bye. so good to chat to you. And if the watchers want to join in come on more the better. bye biggrin
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