What is going either wrong or on?

So the doctor just called me and wants me to see him first thing tomorrow, he said it is for a few reasons, he wants to do bloods, my blood pressure is sky high. I am finding that sometimes I am unable to move my legs without the aid of my arms, I am getting more confused, lots of problems trying to cook things and stuff, a great deal of pain and with all my medication, I should have no pain.

Has anyone else experienced getitng worse once discharged, I smell thing that are not there, hear things that are not there, y mobility stinks, If I walk any distance it is like I am drunk. I am now avoiding doing things for fear of failure.

I need to get back to work, I can not afford not to.

What can I do ???

10 Replies

  • I know a few things that might be wrong, but I'd hate to mention them. I sometimes also go through periods where I think I'm getting worse but so far they've been temporary and usualy during stressful periods. I've often thought that brain injury is a disease process, my symptoms can change in type and severity, but most people are fortunate enough to say they're over their injury and healthy again so the 'disease' label doesn't fit.

    As always JMO.

  • Please tell me what you think might be wrong, I am really stressing, I would be happy if I knew they might be looking for something, a brain tumour or something, sounds silly, but I would be happier knowing what it Might be.

    Please Help Me.

  • I thought you were someone else whose injury occured a long time ago, sorry i'm getting confused, it's those random profile pictures we're given. It sounds like your injury was quite recent, so I'd only imagine that it's most likely your current issues are related to it and not to some other disease. You're in good hands now, it's good that your doctor wants to know more, it's only through knowing what's wrong that you can do something about it right?

  • Yes, I have had unusual swelling near the brain surgery, so I hope nothing is wrong, but all sorts are going through my head right now.

  • Good luck Kig001, at least your doc seems to be on the ball xx

  • I thought you had seen your doctor recently about the swelling and things were ok ?

    A brain tumour would have shown on the scans you had during treatment for the sah.

    Is it possible you have tried to do too much too soon, this is very early days. Get some reassurance from your doctor and get help to reduce your stress level. Regards x

  • Yes my doc said he does not think I should go back to work that quickly, but as he visits twice a week I can not even do it on the sly, he has not given me another sick note! so still £85 a week, a drop of about £250 a week, going to be living on caged eggs cheap beef and horse burgers, cheap sausages, reconstituted fish fingers, baked beans, tasteless mild cheddar, tasteless bread and oven chips soon. We just agreed £2,000 cash back for a minor issue with our bathroom tiles and booked to go to Brugge for 5 days at the end of this month, best hotel out there, If I had known I was not going back to work I would not have booked a break, that money could have us living normally for two months, but booking it yesterday, we would loose all money trying to cancel.

    The doc I saw before said she didn't think the swelling was anything to worry about but wrote to the neuro-surgeon that done the op and they have asked me to go in next week.

    I have pushed myself as I thought it was the best way to recover and get back to normal.

    Me and the doctor both agreed not to ad more medication to what I am taking, gababentin, paracetamol, ibuprofen, tramadol and fentynal as well as two drugs for constipation and 1 to protect me as taking so many meds, oh a cream as I itch all over and today a new drug for blood pressure. I agreed to the blood pressure one due to this could contribute to stress, headaches and possibly another re-bleed. He did tell me after checking my neck and eyes that if I vomit just 999 it.

    I only fear a tumour when I smell things that are not there, hear things that are not there, experiencing a load of pain and generally feeling low, the doc told me that it is possibly due to the lobe of the brain that was affected.

    I have told my partner I do not wish to cook for family and friends any more, it makes me very stressed as things I could normally do with my eyes shut, I can not do, I use recipes on my I-pad to help, but still have pans of milk boiling over, forgetting the sift and just throwing the veg in the sink, forgetting Yorkshire puddings and gravy and putting the oven on the wrong setting. If I am having a bad day, I can not even make a sandwich so I have things like pot noodles at hand for bad days, and avoid using the coffee machine, in fact, time for me and my dogs to have a latte.

    Thanks Cat, you are excellent, you always try to help me.

    I have tried to use spell check to make this readable as my left hand typing does not always push the key.

  • Dude you should not have been prescribed tramadol with a brain injury, codeine is acceptable but for some reason Tram is considered dangerous

  • I have heard that phantom smells can be symptomatic of a tumour, but it can also be a side effect of the sah......it can also be a condition in itself. Forgive me if I've got this wrong but didn't you keep smelling buttered toast? I've had the problem for a couple of years now, & sort of learned to live with it. I also, since my sah, see unidentifiable objects in my peripheral vision.......probably all part of the ensuing madness ! xx

  • When I got out mate, I could barely walk, talk, dress or wash myself. I suffered delusions, apparitions, talked crap, I was argumentative, irrational, violent. I smelt dog crap all the time and everything tasted of sweet and sour, I suffered four or five seizures a day. I'm four years on and slowly but surely most of these aspects have either disappeared or depleted, last week I cycled forty miles and I'm now seizure free for two years. I can hold down a decent conversation and think clearly. Yup I still have my moments, but they are getting less. It's a loooong road but one day you will wake up and think jeez I'm so much better than I was.

    Hang in there dude

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