I'm back!!!!!!!

Hi guys. Well haven't been on here for such a long time. A good few months I'd say. Hope you are managing ok with your bits and bobs. I've been ok. The norm aches and pains, feel like sleeping for a year and still popping loads of pills. Had a down weekend just gone. Just sat down and had a good cry for no particular reason. Just thinking "why me". Does anyone else get like this?? Still trying to manage with having the seizures. Just makes me feel really low after having one. My panic attacks seem to have calmed which is one good thing and have been able to return to normal duties at work. Right I'm off to bed to sleep for a few months lol. Take care all. Big hugs from Claire bear xxx

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  • Hi - lovely, yes me, been having a flare for the last 15months on 10mg prednisolone a day and 2 planquinel which really got joint pain/fatigue/ulcers/hair loss under control. Went into hosp on 20th April for suspected stroke, lost feeling in left side of body left facial droop slurred speech couldn't understand what any1 was saying, nor could i coordinate my legs! it wasn't a stroke as brain scans clear, had a seizure in hospital and had a couple since then also, been stuck in the house for the last 7 weeks, not driving at the mo and can't walk too far. Been to see neurologist and been prescribed Gabbapentin/neurontin which I now take 3 times a day, can now connect my thought to my speech and talk properly without getting facial droop/slurred speech but its affecting my mood slightly, has given me spots and added to the weight gain!! Lol!! I've only upped the dose from 1 a day to 3 over the last week and now having a flare - familiar joint pain, which I believe is to do with the new meds, it's not terrible like before I was on Pred/planqu but its there niggling away in the background, I know it's not cos I'm doing too much because been pretty much incapacitated over last 7 weeks, it's not all doom and gloom though because I can talk, think, and connect my thought to my speech and don't feel like I've had a lobotomy anymore!! I don't have CNS vasculitis which is great - but feel more confused then ever, I find my worst thing is noise intolerance I can't handle more then one person talking in the room at any 1 time - it strips my brain, have 3 daughters, so been v hard!! Have you got to the bottom of what causes yr seizures?? I'm sorry your feeling low - it's hard I've been going through a range of emotions from sheer frustration, anger to feeling pretty bummed out. Anger and frustration I can deal with because it still means I have my fight - feeling low sucks though!! Dig deep honey, I hope this passes quickly for you, sending you well wishes xxx Jo

  • Thanks for your message. Sounds like you have been through the wars. They think my seizures are caused by stress so am trying some relaxing exercises. Which means when ever I can I veg on the sofa and watch tv lol. Hope you feel a little better soon. Clairebear xxx

  • The reason why I mentioned it is because of the seizures - they haven't said mine are stress related, so if yr unsure maybe a neurologist? They so easily put a lot of our symptoms down to stress and I don't buy it. You know yrself better then anyone. Just thought I'd share the fact that I'm on neurontin . I too feel quite whacked out after one, are they regular? It maybe something to think about xx the neurontin is helping me it took a bit of getting used to but I'm on my way back! Xxx well wishes

  • Hi Clairebear, well when you wake from your few months sleep......I just wanted to say welcome back:) Yep can totally relate....aches and pains continue as norm, down days still occur for all the losses we have to experience with this dammed illness. Other than that things coolio. Take care and good to hear from you again xx

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