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Kiwi Grunter

Kiwi Grunter Recovering in isolation and frustrated by insurance

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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. 

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Hi KG. 

 

Welcome to BTg and I’m sorry to hear you are not having the best of times with your insurance company although taking an assessment from doctors is not unusual and asking you to get involved in rehab is often part of the process. Sounds like they don’t have much experience with this. I would write them a detailed letter and explain how you have been left post bleed, how you are adapting but struggling and get it down on paper. Often that’s easier for them to understand the reality of it. The brain and spine foundation do some great printable leaflets, booklets , maybe send one of those with it. 

 

Income protection if it’s paid as an employer scheme  does often have the goal of getting you back into work, and only if they assess that this is not likely or sustainable then they may choose to offer and settle a lump sum. In the U.K. this cover often doesn’t kick in until after you have exhausted sick pay

 

My understanding is it is different to say a Critical illness scheme which pays  out based on a critically condition so I think you need to have a open conversation with your scheme provider about what everyone is heading towards as a goal, if back to work is likely what does that’s look like and how might you get there?. If it your own personal scheme then the goals may be different to an employer one.

 

I had income protection through work which was very welcome for me and my family as I was away from any work for over 16 months and now only work part time but even with a grade 4 SAH and subsequent shunt operation I still had to have many telephone assessments, had to share medical  records and Be  very very open about how I was feeling healthwise but then they also helped by providing me access to some support which I wouldn’t have had otherwise.

 

I would Ask for a contact at the firm who knows your case and only deal with them ,  ask them to only contact you at certain times , give you notice of requests to travel and explain why and also ask them if they can have one of their medical team call and assess you , one who has knowledge of neurological conditions. You need someone who understands what a SAH is and what recovery looks like. 

 

good luck with this. The worry of this will Be affecting your sleep so well done to your lovely wife for helping you navigate this and I hope you get it sorted favourably. 

 

 

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Hi Kiwi 

 

Hope you can get help on this,  like Daffs I had same as her.

 

Sounds like they have not had dealings with a Bleed before and  you need to see someone who has had dealings with it.

 

Be it a bad bleed or whatever a bleed is a bleed and to be taken seriously.

 

After a bleed we do not need stress so it is wise that wife takes over for you .  

 

Good luck with all the red tape  xxx

Hope you and Wife get there soon !!!   So annoying and you need calm xxx

Good luck 

 

Win xxxxxxxxxx

 

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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. 

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Hi Kiwi,

 

Grrrrrrr........ sometimes I despair of doctors who are not specialists in the field of SAH.    What was the song? "Clowns to the left of me, jokers to the right and here I am stuck in the middle with you!"

 

Your brain is the very core of who you are, it is the operations centre, the management centre, the nerve centre and all you get is someone telling you that you should be alright now!

 

I wish inexperienced doctors would spend more time listening and less time telling - they might learn something!  I know they are clever and dedicated people to get those qualifications, but I sometimes wish they would realise that at the time they qualify, their degrees and diplomas have only given them the toolkit to start practising.  They do not mean they know everything and that they can start directing traffic.

 

They are only just entering the University of Life and it can be a rocky road, even for people who are experienced.  A little humility on their part wouldn't go amiss. Just because they are doctors doesn't mean they know everything.  Medicine is a huge field and a newly qualified doctor is only a doctor in some small corner of that field and there are many things they don't know.  In fact, there is probably more they don't know than they do know! A little knowledge is a dangerous thing and no knowledge is even worse! (with all due respect to any doctors looking in!)

 

You were right when you said  your insurance co had dropped the ball!  They showed their true colours - all they wanted to do was not pay, or if they had to, to pay for as short a time as possible!  If its blood from your original bleed, I think they will tell you the blood visible on scans will probably disappear over time as it is re-absorbed into the body and I believe it is one of the causes of headaches. 

 

I had the same problem as you early on and that is what I was told.   I am not medically qualified myself, I hasten to add, and we can't give medical advice for exactly that reason, so speak to him/her and ask the question yourself, face to face and listen to your consultant.  Stay hydrated.  If they are saying it is new blood, you need to go back and get re-examined, pronto!

 

Neck issues? You will have neck issues if you spend inordinate amounts of time in bed due to fatigue.  Is your neck supported well when you go to bed - a V pillow is an excellent aid to support your neck and to help you get to sleep.

 

Yes, you need some exercise - but a simple walk will do!  What you need more than anything else in the early stages of recovery is proper rest, and time for your brain to heal in its own time, not at the pace someone else wants you to recover!

 

Do what you can when you can - no more, no less.  Next time your insurance co call and say something crass - ask them if they are medically qualified to give an opinion and if not, tell 'em to get someone who is - and is a specialist in SAH - and if they are not, tell 'em to qualify what they are asking and advise them you will take legal action if they push you to do anything that sets your recovery back!

 

I've flown loads of times since my SAH (short and long haul) and never had any problems there.

 

Good advice above  from Daff and sounds like you have a great wife, don't forget to buy her a tin hat for when the flak starts flying!

 

Stand your ground, you are exactly right!

 

I wish you well and good luck,

 

Macca

 

 

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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. 

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You're welcome Kiwi, I just edited my earlier post and added a couple of bits so re-read!  Nearly midnight here so off to bed now!  Goodnight and stay well!

 

Macca

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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 

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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 

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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. 

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Hi there yes I am on amitriptyline for headaches (nerve pain) I was prescribed two 10mg every Night but I take one as I find that is working but if it stops I will be able to up it to the two without going to the Drs xxx

 

They took a few weeks to work on me hope they work for you xxx

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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. 

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Hi Kiwi,

 

Thanks for the updates!

 

One thing I would advise is that you read the leaflet that comes with your tablets and make sure you understand what they do and what the possible side effects are so that you can recognise them.

 

Another thing I would do is ask your doctor how they interact with any other tablets you may be on, as the effects might be different or might change.  If you notice anything unusual go back for further advice quickly.

 

Glad you appear to be in the up and up!

 

Best wishes,

 

Macca

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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 

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