funny turns

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Every now again I keep having this really strange feeling. Its like i get really bad dejavu and a really panicky feeling. Its like my body doesn't want to move. I explained the sensation to a doctor once and he said it was a panic attack but I recently did epilepsy training and it sounds like petite mal. It doesn't make me hyperventilate like a normal panic attack and when it passes I feel very drained and sick. Does anyone know the feeling?

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  • Posted

     Cakey7

    I had petit mal as a child. Everyone with epilepsy might display different symptoms. Sometimes I would blackout and other times I would be limp and awake, stare out into space, and able to hear conversations, but in a state where I couldn’t respond. I was in a different unpleasant world. I never had dajavu, but felt an aura of an oncoming petit mal experience. If I blacked out, I had a memory loss. If I didn’t black out, I remembered the prior events. I didn’t have a lot of energy afterwards. You need to be evaluated by a neurologist, not a GP.

    Take Care, Steve  

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    • Posted

      The thing I no one believes me, I know in my heart that what is happening isn't a panic attack but not even my parents believe this is happening. I had a turn this morning and iv felt drained and horrible all day. I'm on an anxiety med (but its main use is to treat epilepsy) and that helped for a while. I'm just worried I wont be believed. Thank you for replying
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    • Posted

      Caley7

      What anxiety med are you on? My petit epilepsy went on to be tonic colonic (grand mal) and partial localized epilepsy. I am currently taking 2 generics for it, lamotrigine (Lamictal) 500 mg and levetiracetam 1500 mg (Keppra, which really I hate). They both keep me awake. So my Dr gave me 45 gm mirtazapine (for sleep and depression, which has become less effective). I also take 10mg generic of Ambien for sleep. Neither one is for epilepsy, and after time, taking both have become less ineffective for me. I got 4 hours of sleep last night even though I took 90 mg of mirtazapine (which I don’t recommend, 45 mg is my dosage) and the generic 10mg of Ambien. In short, anxiety drugs don’t treat epilepsy. I’ve never heard of taking an anxiety med for epilepsy. All I can suggest is to keep a diary of when how much stress you’re on before your anxiety attacks come on. That maybe a contributing factor to consider. And avoid alcohol, a contributing factor for epileptics and other conditions.

      Take Care, SteveLet all of us know how you’re doing in the future. I hope for better

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    • Posted

      Hi Steve,

      Hope things are going better for you mate. My sister is on the same mix of lamictal and keppra, the lamictal to counter the side effects of the keppra I believe. I now take 1000mg of keppra in the morning and the same at night and use cannabis for sleep and to counter the anxiety and aggressive feelings that the keppra can cause. I also used cannabis on its own and went 7 months without a seizure prior to going onto the keppra. I don't think I would be able to handle the keppra without the cannabis. I would become an angry person I fear. Hope everyone is feeling OK. Investigate cannabis for yourselves, theres a world of evidence that is ignored by the medical profession here.

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    • Posted

      Hi ianDerby

      I was switched to Lamictal (before generic lamotrigine which is the form I take now) and I felt great. I didn’t feel like a zombie and my mood was elated. Trouble was when I when to bed, my mind wouldn’t shut up. For some unknown reason, I had rapid, rapid, rapid… scenes in my mind like a non-stop turning kaleidoscope. Dr put me on some other drug- felt like my I.Q. went to 10. Dr put me on Keppra- talk about anger- I told my co-workers to ignore outbursts. At a store, the police were called. Lucky they drove me home, not to jail. A seizure later, Dr added lamotrigine with the Keppra, but still had insomnia. Up to 3 days without sleep. Dr finally added Ambien then mirtazapine. Stopped mirtazapine about 3 weeks ago- didn’t like the side effects of pounds of weight gain (I look pregnant). I kept the Ambien awake all night a couple of nights ago.

      When I lived on the east coast (U.S.), after years without a seizure, my Dr closed my case. (Actually lied to the Dr, did have a couple of problems. Wanted to be free of meds. and the stigma of epilepsy. Denided jobs because of it). I began smoking cannabis. Had a major seizure, ended up in the E.R. (in the 70’s). I though smoking cannabis caused the relapse. Came straight with my Dr about smoking cannabis and expected him to scream at me but he calmly told me it helped (this is in the 70’s). Live on the west coast now (California) and have asked my Dr about it a couple of times. He doesn’t believe in it though the evidence is out there. Medical marijuana is legal here only with a Dr’s prescription. I’d have to switch to another Dr to get a prescription, but I’ve been seeing him for 20 years of records.  Legalizing marijuana use in CA is on the Nov presidential ballot and hope it passes. I wouldn’t need a medical prescription to get it. I probably wouldn’t need Ambien “To sleep, or not to sleep” (play on Shakespeare’s “To be, or not to be”). For medical, insurance and legal matters, I’ll continue taking lamotrigine and levetiracetam (generic Keppra). I think insomnia played a role in my last major episode and a 2 and half day stay in the hospital in 2009.

      I know this post is getting long, but I suggest to everyone that any Dr that gives you a new prescription for any drug, look up the side effects of it on the web. After knee surgery, the stupid surgeon gave me Tramadol for pain. I suddenly began to have unexpected auras (not seizures) when I went to bed and just after waking up. I didn’t understand it until I looked up the side effects of Tramadol on the web: seizures. The bed time and morning auras continued for months afterwards even though I stopped taking Tramadol on the fourth day. I wish I had access to cannabis for daytime/nighttime pain and sleep. I called the stupid Dr up to educate him about Tramadol, he didn’t want to talk very long. I reported my experience with my generally practitioner, new knee specialist and neurologist. All wanted to know the name of this incompetent surgeon who prescibed Tramadol. He knew I had epilepsy.    

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    • Posted

      My niece was dx with epilepsy grand mal at 16 yrs old. Really has not driven. She is 2 7 now an on something for epilepsy but cant remember but I remember when she was Keppra! Tottly turned her psychotic. She was someone else! Extreme rage. Doing wild things like running away fr home an living with a 40 yr old man at 18. Physically fighting with people. Finally got off the poison an on ...i cant remember an she been on this med since 20 yrs old. No prob except seems like her common sense is kinda gone. I feel for her an other epilepsy pts. Im fixing to start Lamictal for depression. Dont have bipolar but my moods are all over place fr extreme stress.We are in US. Just be carefulwith Keppra
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  • Posted

    I have the symptoms you described during my partial seizures I experience from focal / temporal lobe epilepsy. I experience déjà vu, shivery and an uprising feeling from my tummy a worried scared feeling and unable to move or sudden need to walk around.  and when they got bad I was having complex partial seizures and would find myself coming out of a dream state with little memory apart from the sensation before hand These states and feeling would only last a couple of minutes and afterwards I did feel drained. I am now on medication and have found a decrease in severity and number. For many years before my first collapse I would try to describe my symptoms but no one would believe or understand. For me the turning point was collapsing and fitting ending up in hospital and then the more complex seizures increased and people would notice my half unconscious dream state with actions such as removing my shoes or mumbling in response to a question and not remembering the event. but I suggest going to a doctor and explain the symptoms as fully as possible so you don't sit worrying what the feelings are. Good luck smile
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  • Posted

    I take pregabalin 25mg, it says on the leaflet that its mostly for treating epilepsy but can be used to treat general anxiety disorder as well. It started happening when I was 17 so could you just develop seizures? They happen anytime, I could just be reading or watching tv. Thanks for helping me.
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    • Posted

      Cakey7

      You mention watching TV and having a seizure. As a side note, I know strobe lights can bring on a seizure in some people. I took physics in college and one of the experiments used a strobe light. I was slightly worried, but nothing happened. My Dr also gave me a strobe test with negative results. Your TV is a form of a strobe light. Rapid changes of colors have been associated with seizures, especially the colors of blue and red.

      Take Care, Steve

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    • Posted

      Thank you for the info Steve, I think it may be worth a trip to my doctors. Even if they aren't seizures. And is panic attacks I might need different meds.
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  • Posted

    Hi Cake,

    I know the feeling well. I was diagnosed last summer. Anyway, yes deja vu, that is the best way to describe what I experience as a seizure begins, so far they have come in patches. For a few days at the end of the month, I have had 3 or 4. I also have seizures which I am completely unaware of, where I don't have the deja vu, or perhaps just don't remember it, it's difficult to say.

    When I was diagnosed, I thought back and can remember having "funny turns" in the past on a couple of occasions, all of which involved deja vu, and all of which I put down to a lack of sleep, stress in pressurised jobs, and excessive weekends.

    My experience is that my neurologist doesn't know what deja vu is, she told me" no that's a flashback" which it isn't, because I only have the impression that I have experienced that moment before, a flashback would be a memory of something that I had actually experienced. Beware that unless someone has had deja vu, they may not understand what you mean.

    I would love to discuss your experiences further, offer any help I can. I must warn you that I am considered a "difficult" patient because I do not wish to take medication as I have seen the negatives of AEDs without as many positives as you might have been lead to believe.

    Hope everyone is well.

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    • Posted

      Hello thank you for your reply. I do want to get this sorted but if I get diagnosed I lose my driving licence, right? And if I couldn't drive I would lose my job and if I lost my job I would lose my house. If you can survive without meds maybe its better not going to the doctors?
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    • Posted

      Hey,

      Yes if you get diagnosed by a doctor you will lose your licence, however, if you have a seizure whilst driving you will probably die and so will your passengers and whoever is coming the other way, so your licence wouldn't be much use..... Nor your job, or your house.... Do you see what my mean?

      You have to see the doctor.

      Ian

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    • Posted

      I can really relate to everything you've said. I've had dizziness and nausea ongoing for little over a year now and I've had so many pills from antihistamines, anxiety medication, tablets to stop nausea and nothing really helps or stops the problem. This week I experience something really strange like I didn't know how to explain but you've just explained it there like a deja vu moment. I've been to my gp so many times over the past year and they just send me on my way without any further tests or treatment I feel like I'm wasting everyone's time going.

      How are you now? Is there anything that helps? What/when did your doctor take you seriously? I feel like I'm at my wits end I'm so drained from it all plus working full time with no empathy from my employer doesn't help.

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    • Posted

      Hi aimee,

      I smoked weed, from trusted friends not from street corners and found that it helped enormously. Using cannabis alone I went 7 months without a single seizure. I felt the deja vu feeling begin and I very quickly rolled a small but strong joint. I inhaled deeply and held my breath and did it again and the feeling went away and I didn't have a seizure. That was the first time I had felt the deja vu but not had it followed by a fit. In the end I moved to Spain with my wife as there are clubs there where it is legal and the doctors are open about the value of it as a medicine. Hope you're OK.

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    • Posted

      I don't smoke at all so I wouldn't know what to do with a joint! Haha

      I don't know if it's a seizure I've had I hope not! I just get told from doctors that dizziness can go on for a long time and there's not much they can do about it... I don't know what else I can do or say to them to make them take me seriously. I'm really struggling with work but can't just take time off as it's an ongoing issue.

      It's got me drained! 😔

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