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Seizures/variant migraine

Posted , 4 users are following.

Lily23957
Lily23957

I have been having a terrible time with episodes of ''fuzzy head'' ,drowsiness,episodes where I can't think,as if my brain has stuck,visual disturbances where everything looks strange/unreal,sometimes my speech is affected.In between these episodes I have a permenantly heavy headed feeling.At the moment it is so bad that I am unsafe to drive.After a stroke like episode last year I was diagnosed with a rare form of migraine and my GP thinks that the recent problems are part of this.I have been commenced on epilim as a preventative measure but not sure they are working.Do any of you out there suffer with the same or similar?Do you think or have you been told that it is part of your fibro?This is devastating my life at the moment and I really need your help!.....When they thought I'd had a stroke they did scans which showed I had advanced grey matter loss in the frontal lobe......I am so scared of developing dementia.

1 like, 25 replies

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  • jeanne81532
    jeanne81532 Lily23957

    Posted

     Oh Lily how awful for you! I can understand that you would be scared of developing dementia. You poor thing! Have your docs given you any indication/ reassurance about this? As far as the fuzzy-headedness and inability to think goes, I can tell they are a symptom of fibro, as is fatigue. Are you on any meds other than Epilim? And you don't mention any pain at all. Do you have any? x
  • jeanne81532
    jeanne81532 Lily23957

    Posted

    Hi again Lily, I just did a quick Google search about loss of grey matter and it appears that it is the case in fibro patients. There is no mention of increased risk of dementia. How long have you had the visual symptoms of things looking unreal? I wonder if this may be related to your  Epilim. x
    • Lily23957
      Lily23957 jeanne81532

      Posted

      Hi Jeanne! Thanks for your reply.I do have lots of pain which is mostly controlled by naproxen and paracetamol but I do get lots of breakthrough pain.I am going to ask my GP to refer me to the local pain clinic.I also take a small dose of pregabalin to control anxiety,I have tried increasing the dose but it has a bad effect on my heart (irregular heart beat).The visual symptoms started before I began the epilim.I took epilim for 15yrs as a mood stabiliser after a bad breakdown.About 2yrs ago my GP and I decided I should be weaned off them and thinking back it was about that time that I started to have problems.
    • jeanne81532
      jeanne81532 Lily23957

      Posted

      Hi again Lily, I think referral to the pain clinic is an excellent idea. I was diagnosed with FM at my pain clinic. And I can't speak for all pain clinics, but mine runs fibro courses which you can choose to attend. And I was given a TENS machine to use as well so I can't recommend my pain clinic highly enough. Crosswords and sudoku are very good for keeping your brain active. Don't worry if sometimes you can't concentrate, or get too sleepy, that happens to all of us. Good luck. x
    • Lily23957
      Lily23957 jeanne81532

      Posted

      Hi Jeanne! Thanks for your advice.I am definitely going to ring my GP tomorrow and sort things out.What did your fibro course involve?I have been referred to physio who the rheumatologist said runs a fibro grou. But the wording of the letter that I have just received from them makes me think that it is just an assessment for advice on exercise.I was a nurse in orthopedics and trauma for years so I know all about execises to keep the joint and muscles mobile.I also use a tens machine for my back pain and would highly recommend them to everyone.
    • jeanne81532
      jeanne81532 Lily23957

      Posted

      Hi Lily, I didn't actually attend the course at the time. You have a psychological assessment and at the time I had just started on Pregabalin which made me a bit euphoric, so I was assessed as not needing the course at that time. However I feel I do need it now, and have asked to be re-referred. I believe part of it involves CBT to help give you coping strategies for the pain. I'm not sure what else, but it would be worth asking when you go. I too am a former nurse. Whereabouts are you? I'm in Eastbourne. x
    • Lily23957
      Lily23957 jeanne81532

      Posted

      Hi Jeanne! I'm in Rochdale.It's amazing how many nurses have fibro! It must be all that stress at work! x
    • christine26761
      christine26761 jeanne81532

      Posted

      Pain clinics are unreal..I have a TENS machine attached to my circulation booster....can't live without it..use it daily...sooo good...I had 9 hours sleep last  night yet I could just go back to bed after being up for 3 hours...totally exhausted...the only counter tact is...I'm just having a lazy resty day..just go with it..if you can..I'm in Tasmania Australia and it rained this morning, but it's going to a nice day..23 degrees Celsius...a lovely day...have a great day Jeannie and a Lily..:-) xxx
  • christine26761
    christine26761 Lily23957

    Posted

    Poor you Lily, it is frightening, but it's just part and oarcel of this rotten Fibro..I play solitaire on my computer and boggle with my husband...I don't have to do it very much now..but it certainly helps... Have a nice day..be blessed..:-) xxx
    • Lily23957
      Lily23957 christine26761

      Posted

      Hi Christine and thanks for your reply.I like to keep my mind active as well.I do lots of crosswords and sudoku.Sometimes I am so sleepy though that it is impossible to concentrate.x
    • christine26761
      christine26761 Lily23957

      Posted

      Just realised I typed oarcel  in instead of pacel..Ooops

      good that you keep your mind excercied..I guess if you don't use it you'll loose it...I know if I don't excercise mine now and again when I get brain fog...it's much worse..it's awful being in the middle of a chat and you just completely forget what your talking about including their name..oooops...funny when you think back,....but devastating when it happens....be blessed.,:-) xxx

    • Lily23957
      Lily23957 christine26761

      Posted

      Hi Christine! Ha ha! My typing isn't perfect either.I also find that my writing can be affected.I mis-spell words and write letters back to front.Ha ha! When I finished typing this I found quite a few mistakes and had to correct them!lol
    • jeanne81532
      jeanne81532 Lily23957

      Posted

      Yes that happens to me too. Sometimes I get muscle twitches too, which caused problems when I was using a mouse at work, and had to input figures for staffing levels! Another lovely Spring day today, Lily. x
    • Lily23957
      Lily23957 jeanne81532

      Posted

      I get lots of muscle spasms and twitches.Sometimes it is difficult to hold a pen or a knife and fork because of muscle spasms.I have been known to give my husband an accidental kick in bed when my legs start twitching! Ha ha! It's raining where I am Jeanne but I am still going to try and take the dog for a walk.x
    • jeanne81532
      jeanne81532 Lily23957

      Posted

      Yes u could be right about nurses and stress and  Fibro! And yes I get the leg twitches too. I'm sorry it's raining in Rochdale, it's so lovely here. Have a good day anyway, Lily. Hugs. :-) x
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