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Kiwi Grunter

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  1. Kiwi Grunter

    Strange Turns

    Hi Charlie, I know what you mean by nasty close to actual bleed headaches. I’m 15 months (April ‘17) in after a non aneurysmal CT and MRI cleared bleed . I still occasionally get a serious headache and it is always 36 hours after overdoing it, especially after going to work to sort stuff out. They are becoming less frequent and I am feeling better but it’s an incredibly slow process. If in doubt get it checked it out but I wonder if you’re doing too much. Unfortunately I don’t think you can actually try to get better from an injury like this , you have to relax and let yourself get better and not do too much when you feel well. I’ve been there too many times. Even still a 2 hr car trip as a passenger can leave me with a headache and in need of a hours sleep even though I could drive myself for an hour as far back as September. Good luck, drink plenty of water, don’t let yourself get too hot, relax and switch your eyes and brain off whenever you can. Check out VanessaW’s post Aug 2014 too Grunter in Kiwiland
  2. Thank Macca, My GP told me about the side effects and says he’s even used it himself for chronic ankle pain (he’s a serious athlete) so can speak from experience. We use the MyHealth app so I can communicate with him at any time and he wants me to check in with him after 2 weeks useage. About to take my next big step and agree to retiring early from teaching on medical grounds. My boss whose known me for 17 years is happy to agree to it. Hope all’s well with you. Cheers Grunter
  3. Hi Jess, Thanks for that I was going to keep on taking them. Wow you’re a long way down the track , 16 years, and still recovering. That makes my decision to retire from teaching even more logical. Best wishes from Aotearoa.
  4. Hi all, Has anyone else been prescribed Amitriptyline for headaches. I’d be interested to hear whether anyone found them uselful. I haven’t noticed any effects yet but I’ve only taken 3. I know no one is allowed to give medical advice so I’m only seeking experiences not advice on whether I should or shouldn’t take them. This is my inexperienced GP wanting to try something as he’s still concerned that he may not be doing enough to help me being his first SAH case. He trusts me to judge for myself as to how effective they are and whether I should continue or not. I’d rather not take them as I don’t feel like I need them and have told him so but he also wants me to try them and also see a specialist friend of his for a second opinion which I don’t mind doing as he’s been very supportive of my own feelings re Insurance pressures. Thanks folks and best wishes to all.
  5. Hi Macca, Thanks again for all of your support. An update on how I got on with insurance co. They backed right off and I haven’t heard from them except for the monthly letters asking me do a self assessment and 3 monthly GP assessment. It pays to get angry with them and assertive, a few choice expletives over the phone helped. Having everyone off my back trying to make me do things I felt wasn’t necessary helped too, I have made good ground over the last 2 weeks after flatlining May-June. I can now stay awake longer at night and do not need sleep during the day. I’m still about 80% of normal self do 50% of a normal day but happy with progress thanks to reassuring advice and shared experiences here. Two short visits to work to sort out a few issues left me with serious 24 hr headaches 36 hrs after each visit. We have decided (work and myself) to go for early retirement, as I have been replaced in my job by 3 others so I don’t actually have a position to return to. One of those people stuck a knife deep in my back while I was down but that has rebounded on him and he is being found out, with a bit of help from me and his own stupidity. Cheers all from a wintry New Zealand
  6. Hi Macca, Thanks again for all of your support. An update on how I got on with insurance co. They backed right off and I haven’t heard from them except for the monthly letters asking me do a self assessment and 3 monthly GP assessment. It pays to get angry with them and assertive, a few choice expletives over the phone helped. Having everyone off my back trying to make me do things I felt wasn’t necessary helped too, I have made good ground over the last 2 weeks after flatlining May-June. I can now stay awake longer at night and do not need sleep during the day. I’m still about 80% of normal self do 50% of a normal day but happy with progress thanks to reassuring advice and shared experiences here. Two short visits to work to sort out a few issues left me with serious 24 hr headaches 36 hrs after each visit. We have decided (work and myself) to go for early retirement, as I have been replaced in my job by 3 others so I don’t actually have a position to return to. One of those people stuck a knife deep in my back while I was down but that has rebounded on him and he is being found out, with a bit of help from me and his own stupidity. Cheers all from a wintry New Zealand
  7. Kiwi Grunter

    Thanks for being here

    Hi Carolann, Like you I found so much help after finding this site but almost a year my PMSAH. I am a first for my young GP so he’s concerned that he’s not doing enough to help but I’m convinced that there’s little that can be done to help me except for rest and time. I’m now 15 months in and feel best when I do least either physical or serious mental work. I found I made rapid gains in first 3-4 months then plateaued off and now making very gradual yet almost imperceptible improvements but I am getting better. I can now stay up past 7:30 in the evening and don’t need sleeps in day. I still get daily headaches but no where near as severe or frequent. Relax and don’t try to get better. Sleep lots and drink plenty of water. Avoid stress, it does get better it just doesn’t feel like it at times. Smile and laugh Best wishes from New Zealand
  8. Kiwi Grunter

    Vestibular issues ..

    Hi Daffodil, Haha I will try to stay out of the river, biking with snorkel and fins has always been difficult😀😀😀 I always wear ear protection while mowing too, usually with my favourite music or radio station playing. Actually haven’t done either yet but on my radar. 👍👍👍👍
  9. Kiwi Grunter

    Vestibular issues ..

    Hi everyone, Thanks again for everyone’s support. It is with much relief I can say that by insisting that I know know my own mind and body and understand my issues that I have managed to convince the occupational therapist and exercise rehabilitation expert that I don’t actually need their help. I’m not saying that I have a closed mind and blank refusing their expertise and as I have said to them I should’ve had this support the minute I was discharged from hospital and not left to my own devices to figure it all out myself. I have politely acknowledged their expertise and willingness to help without giving the impression that I’m a belligerent old fool. It’s a case of don’t call me I’ll call you. They have all admitted that i’m obviously not a couch potato and intelligent enough to have got through to here and pleased with my own progress. Yesterday I was left with some information about Pacing and Dealing with Head Injury which I could have written for them. It took them 11 months and 34 days to get it to me. Anyhow it is also by quoting what many of you have said in your communications, which none of these people have tried to discredit, that has also added credibility to my insistence that they’ve offered too little too late and I’m as well as I can be. My GP was very good last visit and acknowledged he has seen progress and support that he wouldn’t insist that I do something that I’m not happy about even though he thought I might be fit from exercise programme. Looking forward to getting on my bike and dawdling down our local riverside paths before winter in NZ. Also will mow the lawn for the first time in a year, I’ll try not have my tongue hanging out and make like I’m driving a tractor topping a paddock before the cows go in!!!! Anyhow thanks again everyone and good luck with recoveries.
  10. Kiwi Grunter

    Vestibular issues ..

    Hello Swishy, I really love the term Swishy and am using it myself now. I was visited by an Occupational therapist employed by an insurance who has never dealt with a PMSAH case before. Because of previous visit to an Occupational Rehab Assessment specialist they are hell bent on thinking I have fatigue and tiredness. My wife and I disagree, are both really happy with my progress and know that my inability to do things at the same rate as before is do to my unresolved blood and the subsequent swishiness, headaches, ringing in ears , feeling like I’m walking on a moving ferry, outside world seeming surreal, noise sensitivity. It is very, very slowly improving. I’m now about 80% right and the last 20% recovery is so slow it almost imperceptible. The OT want me to fill out a chart on how tired I feel, that I found almost impossible to do because sometimes I feel physically fine but have bad swishiness or a headache. Because the insurance company want “figures to show progress” I’ve created a swishiness scale to rate how my head feels. 0-perfectly fine 3- moderate hangover 5-headache taking over 7-got to sleep it off if I can 8-take 2 panadiene 9-take 2 more 10-this is not good thinking about hospital. I’ve been recording myself on this for 5 days now. Makes more sense to how I feel. I can’t believe that it’s OK to be in hospital with all of my head issues stopping me doing things and now 11 months later still having the same brain based problems, even though I’ve been told it’ll easily take a year for the blood to resolve, now they’re telling me I I’ve got a fatigue problem that needs an exercise programme at the gym. If I needed to go to a gym I would have gone myself. They won’t listen to my wife and I telling them about everything I’ve done in my own time. Frustrating. I feel like screaming at them but it’d hurt my head like sometimes when I walk it thumps in my head when my feet hit the ground. Eeeeek
  11. Kiwi Grunter

    Vestibular issues ..

    Hi Swishy, I’m same as you coming up 11 months next after PMSAH. I’ve had a permanent hangover, noise sensitivity and ringing in ears that haven’t improved. I’ve always been able to walk, I was the only walking patient in my neuro ward so I felt like a fraud. I’ve had no support from anyone except for family and friends. Only yesterday after me making contact have I seen the local stroke support people. They were wrapped that I volunteered myself as support person for others when I feel right. I’m a secondary school teacher who was also in charge of running the school’s student management system database and as my school has 2 farms and a recently installed robot to milk the dairy cows, was very involved in the running of that. I can’t do any of now although I am being hounded by an insurance company to get back to work. Anyhow i’d say what you are experiencing is pretty normal but unique. I still have to watch where my feet are going and have a strange surreal peripheral spaciness(Swishiness?) The spiders that crawl over my scalp are weird too. Random headaches are a nuisance too. Dont worry about weirdness it sounds normal. Good luck Swishy relax and try and enjoy the journey. Grunter
  12. Thanks Macca for getting back to me you have summarised how I feel nicely. My wife is fielding calls from insurance co and I have a local stroke support person visiting me tomorrow before a visit from the occupational therapist I went off at on phone. I know I have 2 separate neck issues. One is definitely a chiropractor fix and I’ll see to that at the insurance cos expense. The other is definitely right up at the top of my spine where head joins, the area it hurt when is was at my worst in hospital. The neurosurgeons warned me I was going to feel like I was whacked in the back of the neck high up and they weren’t wrong there. Thanks for your support I wish I had joined this forum last year before I went away I’ve just about had more advice and ideas in the past 2 days than I’ve had in the past 11 months.
  13. Thanks folks. I wish I’d found this site earlier or had been referred to the type of support you are offering in June last year. I actually found the site in early December just before my trip to Europe that was booked prior to the bleed. I believe the people I am dealing with have had experience with cases before I no doubt there , it is more my GP is not too experienced but none the less supportive. He told me not to look at the internet but I’m pleased I ignored him. Reading your thoughts are helping me calm down. I am very much a DIY person and usually a very active independent thinker. I unfortunately had visions of someone putting me on a treadmill and making me walk fast and the subsequent horrible headache for 2 days put me in self preservation mode. I’ve done it to myself on too many occasions…overdoing it especially when my wife is at work …so the thought of somone else trying to make me do things when my brain says no didn’t sit well with my 11 month hangover. I know I’m a little belligerent to their system because the Occupational assessment specialist I was sent to see started off on the wrong foot big time. Firstly he thought I was the another person with a different issue and then of course had no idea what I did for a job. So once again I had to explain what he should have read in an 8 page report written by an occupational therapist. In contrast the psychologist I saw last week had done her homework and genuinely seemed to understand my suffering and the issues I was having. Another unfortunate event was a day after my bleed I felt quite good and was told by a neurosurgeon I’d be back at work in a month. A day later I was almost unconscious for 3 days. When I was discharged from hospital I sat home alone with horrendous headaches getting anxious about not feeling well enough and still not well enough to work. I think the dramatic contrast between talking someone who I felt truely had a handle on how my brain feels and giving me a sense of ‘ it’s actually alright to be like it and keep doing what you’re doing’ and ‘ we’ve got to make an appointment at a gym to start your exercise programme’ and visions of people making my brain hurt was too much. Ive calmed down and in hindsight I guess it’s only an assessment initially. What seems wrong is that I’ve had no support or advice for my brain which is what is suffering yet everyone seems to be hell bent on exercise where there’s no issue apart from I can’t do as much as fast because it hurts my head!!!!! Ill try and get back to sleep now it’s 3.59am. Thanks again.
  14. Hi folks and thanks for the earlier welcome. I am a teacher and just turned 60 last year. I had a PMSAH in April ‘17 2 weeks after a fall at work where I hit my head and was seriously unwell, tired, bad headaches but was told by Drs it wasn’t related(everyone who saw me in that state don’t believe that). Spent the typical 10 days in hospital. Was transferred back to my local hospital for 3 days after 8 in larger hospital 100km away with neurological ward. When I got back on a Friday afternoon my local hospital couldn’t get rid of me fast enough but I stayed until the Monday and was sent home with nimodopine to self administer every 4 hrs. Following that I had absolutely no support or advice except for an MRI scan after 6 weeks and a visit from a neurosurgeon from larger hospital. He said I had significant amounts of blood visible on scans and could take a year to resolve although I could fly OK. Fortunately I have income protection insurance but this has not been very nice and an ongoing issue. When I lodged a claim they initially told me that I had to use all my sick pay before they would start paying. They eventually realised they were wrong and started paying. They insisted I travel 100kms to see their occupational assessment specialist who decided that needed an exercise rehabilitation programme and a psych report because I was anxious at times. Unfortunately I have a young GP (a surgeon) who I think I’m his first SAH case -he told me I shouldn’t have neck issues because I have a brain bleed-and I had only ever seen him a couple of times before went along with the occupational assessor report. Once again no support for the real issues of having a permanent hangover, headaches, tiredness, tinnitus and noise sensitivity and diminished endurance. My wife and I both agree that I am doing everything I can to recover. I reckon I’m physically as fit as I can given I only have 80% at best of my normal brain capability. Last Tuesday I saw the psychologist and as I left her she said she didn’t know why I was sent to see her, she didn’t think there was anything she could to help except maybe get local stroke support people to give advice and, lastly, she thought I was doing everything I could to help myself and she was going to let insurance co know. Next day I got a call saying I had to get my exercise assessment done. I did lose my patience on the phone and unfortunately have been feeling more unwell and having sleepless nights. I know I don’t need to do any more because I have figured out what I can and cannot do. If I overdo anything I’m flattened with headaches. I do feel bullied so I’m digging in my heels and saying no. My wife of nearly 40 years agrees and is going to take my calls from insurance co to save my anguish. What really makes me laugh is their justification for doing stuff is “ we have to do everything we can get you rehabilitated and back to work”. I think they dropped the ball there. Would love to hear what others think.
  15. Kiwi Grunter

    First trip booked

    Enjoy the trip. I had my bleed April and flew from NZ to Nice early December (4 flights about 17,000 km) 3 train trips from Nice-Avignon-Barcelona then flew to Dublin, spent 3 weeks travelling around in Ireland by car then flew Dublin- Frankfurt-Vancouver In one stint and Vanouver -Auckland -Palmerston North in another. I was flattened a few times but not by the flights. Noise cancelling headphones, sleeping tablets and the right amount of water did the trick for me. Happy holiday img.
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