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New to group, my story - Ian


ian264
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Hello all, I really don't know where to start.

 

On December 26, 2009 I collapsed during love making with my wife. I remained awake and was taken to hospital where it was diagnosed I had suffered a subarachnoid haematoma. Since then I have been on a cocktail of tablets beginning at 20mg per day to today 85mg per day.

 

The thing is I get sharp, short pains in my head all of the time. MRI scans have been sparse and the consultant says 'there is focal expansion', presumably of a pool of blood or clot - I seem to be in the dark about what prospects I face.

 

My GP simply says I should not plan too far ahead and monitors me on a regular basis as my diasystolic BP can not be controlled. At times I just don't know what to think or do, and trying to see the future positively is incredibly difficult.

 

How many other 'survivors' experience this or am I the odd one?

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Hi Ian :)

 

A very warm welcome to BTG. Glad you found us.

Sorry to hear you are still suffering from sharp short pains in your head all the time.

It may well be to do with the fact your BP can not be controlled at present.

Having constant headaches is bound to get you down and must be very hard for you to cope with.

 

You have not mentioned whether you have managed to get back to work at all?

If you are finding it hard to see the future positively, maybe you could ask your GP if they can get you some counselling. There is normally a waiting list, but i found it very helpful to talk to someone away from family and friends.

 

You will find lots of helpful information and support here.

We look forward to hearing more from you.

 

Take care

Tina.

 

 

 

 

 

 

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Welcome.

 

One of the few on-going problems I have is acute headaches, mostly behind the eyebrows and by the temples.  I always say they feel like a brain-freeze from drinking something too cold.  Luckily, they don't seem to last very long.  So if this is what you are experiencing, you are not alone.

 

Best wishes,

 

Chris

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Hello Ian

 

Thanks for sharing your concerns on BTG.

 

Sorry to hear that you feel so uncertain about how your recovery progresses. I can imagine that there has been so much for you and your family to contend with since December 2009. If you want to- it would be helpful to have a brief summary of how your lives have been affected by SAH.

 

So glad you found this site, and you will definitely find much help and support as you look through the different threads. Any questions you have will be readily answered.

 

Take care

 

Subs

 

 

 

 

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Thanks for the welcome guys, I feel as if it is hard to say what I need to at times, bear with me!

 

The pains I get are short ones ranging from dull aches lasting a second or two to loner more intense pains that last a little longer. The worst is a piercing pain which sounds high pitched, that leaves me a little wiped out for a short time. Thankfully that one comes very rarely.

 

A rare one is like a cool feeling that spreads across my brain, that one leave me numb for a few minutes, I don't know what it is or how it occurs, like all of the pains unpredictability rules.

 

Almost all of the pain is left side frontal cortex region, but very occasionally I get a pain on the other side, the GP says scans show small expansion on the right a well.

 

The trouble with positivity is that in 2014 I received a letter from a senior neurological consultant - asked for a second opinion by my then consultant - that basically states 'there is no treatment we can offer you'.

 

I try not to let it stop me from working, and living and laughing. But I feel confused as to how I get to walk around and be outwardly healthy looking when so many are not to lucky, I know many on here will not be able to enjoy life the same and that makes me feel sad and perhaps not as worthy as some.

 

I have a lot of reading to do on this great site, I hope I can find some answers, or be of value to someone else.

 

Ian

 

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Hi Ian, Welcome to BTG,

So sorry that you are having problems with headaches and when they can`t be explained it makes things stressful.

I had ruptured Aneurysm 2 years ago and they found another that hadn't ruptured, I have suffered with headaches ever since.

 

What I was told was to make sure to drink plenty of water, I have to admit it really does help, my headaches are less frequent and less severe. It`s not always the answer but certainly worth a try.

The other thing which could be making things worse could be stress, Tina is right maybe some counselling might help.

 

I also think you should try and pin down some answers from your consultant, I know they can`t always tell you what the future holds but maybe if things were explained better to you, it may help to put your mind at rest and help you to feel a bit more positive about your future.

 

You have come to the right place to get help and support, you will find everyone will make you feel very welcome we are a very friendly group of people who help each other along the recovery road, as you will find out.

 

Ian, keep posting we are all here to help,

 

Take care

Love

Michelle

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Ian

 

Welcome hun and please don't ever think that you're not worthy!!!  Everyone is worthy no matter the lasting effect of a brain hem.  I used to feel like a fraud compared to some on here when I first joined (ten years ago!) but it doesn't matter how or if the SAH has left you affected - you have suffered and we're here to offer support, advice, understanding and sympathy.

 

I know that there are some on here who had their SAH before me and still are not able to do a lot and some that suffered after that can do much more - your capabilities are not in question here - your feelings and worries and recovery are what this site is about.

 

Feel free to sound off with your frustrations and share your ups and downs - i can guarantee that there will be someone here who can empathise with all that this happening.

 

Take care xx

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Ian, Sami's right, there's no competitive SAHing here. We all survived and have different legacies but all know everyone has it hard some days , in that we are very equal. 

 

 Post my shunt surgery I suffered a lot of headaches , nausea and pain that just used to come on, no reason and it was horrid and sharp and just really unpleasant to deal with. What made it a little harder as well was as you say you could look fine outwardly to others   ( well to be fair my hairstyle was hilarious back then after surgeons haircut) but that didn't represent how you really felt up top.

 

So I adopted and to this day complete a little routine when I feel my head is a little out of sorts and maybe you need to find a little routine that helps you' shut down' each day. i figure after all it's been through a little extra help and gentle touch can't be a bad thing to help close down for the day.

 

So I give myself a very very gentle neck and shoulder rub With a oil which also has an essential oil which I have checked has no side effects for me. Rose. It's very calming, I do it before I go to sleep and it has really helped the frequency of my headaches.

 

Not sure rose is the best scent for a man but even just a calming massage oil which you can get in most department stores would do the same trick I think, but if you do try it go very easy and only do a very short time, no pressure, just very gentle touch really. I don't even ask hubby on this one as then I know exactly what is right for me that day. 

 

Also if I have a doozy of one now like Michelle advises I drink lots of water , But I also drink one cola, full fat which is what my ward nurses told me could really help my headaches post surgery  and for me that still works. I have no idea why, it's caffeine which probably is dreadful for me but I figure 1 can of coke is worth the risk every now and then.

 

Now I'm not advising anyone does either of these things without weighing up that they are going to sit well with their current state of health but just sharing what's helped me get a little better balance. 

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Thank you all for your responses, I just feel alone sometimes and a bit sorry for myself!

 

The injury history with me is one I often can't correlate, I first received an RTA caused head injury in August 2003 but a full six years elapsed before the eruption, that fails to make a lot of sense to me.

 

After the SAH I was told basically to stop my sport hobbies which were Hill running and rough trek running, this was because of the BP issues effectively linked to having a 'leak; of blood intensified by raised BP.

 

Inevitably I gained weight, not helped by my age and I guess I comfort ate because of the mounting depression. Now I am dieting and drinking pure water rather than coffee or juice, so I am trying to be positive physically.

 

I have a lot to learn as I have been on my own for a few years now, my marriage did not survive sadly, but on some ways that might have been for the best. So I shall read on and listen carefully to you guys. After all we are all here by the grace of god and together we stand.

 

Thanks and love to you all

 

Ian

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Ian, totally sympathise with you.  I exercised 4 times a week - jogging, step aerobics, aerobics, and aqua aerobics - had to stop after my SAH and put on 3 stones in 3 months.  I'd had enough of the weight gain two years ago and decided to diet without the exercise.

 

I've managed to lose 2 1/2 stone through healthy eating alone.  I don't deprive myself and if I want something I have it - everything in moderation.  I get the depression thing too - I needed something to feel in control of my life and food helped.  

 

Stay strong because despite how you feel, you sound like you're doing well and are coping really quite well. 

 

We are here for you and, yes, by the grace of God we are standing together xx

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Ian, the RTA head injury and the SAH are more than likely completely unrelated and just coincidence.

Good luck in your effort to lose weight and drinking lots of water can only be good, it helps keep headaches at bay as well as all the other advantages.

 

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Hi all!

 

The RTA was the only head injury I ever suffered other than stupid things like bumping my head on the ceiling on the staircase etc!

 

I just thought the likelihood was that having severe impact injury was a root of the SAH, but thinking about it the injury back in 2003 is unrelated as most of the impact injuries were on the right side of my head.

 

Dieting is not always so easy but cutting out sugars and fats is relatively easy, being a chef helps in some ways, hinders in others as you all can imagine!

 

I do tend to walk more than I used to, I live not too far from the coast and on a good day I can walk there and back in six hours, that is good exercise!

 

I have barely began reading all of your stories but I will persevere and hopefully add something.

 

Best Wishes to Everyone

 

Ian

 

 

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Hi Ian,

I've not replied earlier as I kept messing up.  Anway  I will tell you my story if it makes you feel a bit better all well and good xx

I had SAH in 2009 and remember nothing apart from dream like happenings because of Ventriculitis, followed by Sepsis and in 2010 I had a shunt fitted, that's when I woke up from my dreamlike state.  

 

My Daughter found BTG and it helped her while I was in hospital and it has helped me no end.  Walking is hard but after being told "what makes you think you will walk again" 4 steps 10 steps  all help.  Plus my other name is  weight gain Win lol xx

 

All what people have already said ie water etc. is worth taking note of. 

My Surgeon said to me when I went back to hospital for my final MRI  "No stress whatsoever" so I sing and surround myself with as much happiness as I can.  It works for me but everyone is different.

 

Now get well and smile when possible, I wish you all the best and a song goes "you gotta accentuate the positive, eliminate the negative".

Perhaps I should not have sung on my first post to you but what I am trying to say is Keep Happy xxx and Good luck

Regards

WinB143  smile when you can xx xx

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Hi Winb143 and everyone

 

I understand how being positive and stress free can help in recovery/sustainment, but I'm going to be really honest here and say this,

 

Every day I suffer stress and can't really stop it because of the feeling of living on borrowed time, it affects me in ways that nothing else does. I have no confidence in committing to anything, I see the negative in all offers, plans etc that come along.

 

On a daily basis I don't really have anyone to talk to, and it is a subject friends don't really want to listen to you talking about - well most of them anyway.

 

The very slow deterioration of my condition occupies my mind a hell of a lot, I can't even write a letter, send and email or send a text without having to think about not saying things that might upset others.

 

Work is the only thing that takes my mind off the condition and I work as many hours as I can, which I know is inevitably detrimental. But it seems the only method of coping that I have.

 

I might come over as always looking on the bleak side, but I do struggle especially when I'm on my own, I don't even know what i'm looking for most of time!

 

Sorry to be bleak

 

Ian

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Ian, what you are feeling is quite normal after a SAH, not many of us have got away from feeling like that.

 

My suggestion is to visit your GP and ask for counselling  to help you come to terms with the event. There may be some drugs to help you along in the first instance.

Headway could be another port of call as is The Brain and Spine Foundation. Both are willing to listen and give advice on how to cope with those feelings.

 

There is help out there, go get it.

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I do understand how you must be feeling as when I came on here, I used to think "uh oh next step is my funeral" that was 6 years ago.

 

As Super has said get help and advice or ask Doc if he/she knows anyone you can talk to about it.

 

In the meantime talk to us and keep typing your troubles and give vent on here it all helps.

 

In the meantime I wish you all the best and keep your chin up when possible xx also be as bleak as you want but promise me a song once in a while xx CarolynUSA and I will sing first.  Perhaps one day you'll have a song on your mind and you can type it out but it must be a Happy One !

Wins Orders lol

All the best

Win xx xx Any fav singers?

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Thanks to you both SuperMario & Winb143, forgive me from depressing all of you!

 

Songs! Well I'm a hardcore Charlatans & Stone Roses fan, so cheery songs are not so common!!

 

I suppose across the musical spectrum I love - it ranges from Indie (Manchester Indie) to German Classical composers I would chuck in Listen Up (Oasis), Sally Cinamon (Stone Roses) and a wild card of Paradise (Coldplay)

 

If I get started on songs we'll all be here for the next hundred years!!!!!

 

Thank you for putting music in my head, that is always a help - takes me away - oops there's a lyric.. Time keeps rolling by

 

Ian

 

:)

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You do not depress us Ian as we have all been there and we all need to let it out (what's bothering us).

Now onto music hmm next 100 years will do for me I'll be the oldest swinger in Town lol if not already !! No comments.

 

Now you sure you don't like any old songs as my Brothers used to sing in pubs and at the Players Theatre in the 60's so I was thinking  more of 60's songs and Barbershop quartet lol.  Was bought up on some songs with rude words so can't sing them !! lol.

 

Keep the music in your head and try a smile every so often when you feel down do this Ready?

I read if you smile a negative thought cannot get by you so  here we go and you must try it just for me please.

 

Okay here we go Ian start by turning up corners of mouth towards the eyes/temples  now wait until you feel a smile break through

You may feel a fool but who cares ready up the corners go and feel a silly grin cover your face.  Also think happy thoughts at same time.

 

Now we should be smiling, looking a fool but smiling xx  Right by now you should have a smile on your face and no negative thoughts can get through.  Now hit it Ian lets hear a song lol xxxx

Good luck

 

Win xxxx

 

 

 

 

 

 

 

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Ian, its been scientifically proven that singing is good for the brain and can help ward off not only dementia but also depression.  Can't vouch for the damage to the ears when our Win kicks in though :biggrin:

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See Ian every time I sing it get em talking  xxxx Trying to drown me out methinks xx lol  joke Sami xx

 

My Hubby likes his music pretty loud but I like old songs Bob Dylans She's an artist she don't look back is my Fave of Dylans.

 

Also I do like the olduns like Al Jolson, my brothers singing, and since my bleed I like quiet music and hubby has gone from Bob D to Dean Martin lol talk about a change xx that will come as you get older.  When I was out of it I saw my brother sing to me and my Mum was sending me back by telling people not to talk/sing to me.  Dream maybe  ?

 

I like to think someone was watching over me xx  So you wont want to hear any of my songs ?? ha ha if you do come into Green Room and we can singalong  xx Keep brave and be positive.  Deal ?  

Wishing you all the best

Win xx xx

 

 

 

 

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Ian

 I haven't commented on your postings before and I feel for you. I would like to try and extend a hand out to you to see if together, we can get you on the road to a better frame of life, so to speak .

 

It is very unlikely to happen again. a lot of people are walking around with annies yet to be discovered and many who have had bleeds who have the odd niggle in the way of limitations but also lead a fairly normal life.

I know you say you try not to dwell on what happened, but you seem to be unable to break the habit, so to speak without being condescending.

 

Could you phone your consultants secretary direct for an appointment with a neurologist so you can discuss your fears  and concerns and ask for counselling fairly urgently.   Write all your fears and concerns down on a note pad and take the with you  by doing so it hopefully will put your mind to rest

 

I've been dealing with my partner for over eight years and by talking to the specialists, I gained a better understanding of my partners situation and found ways of getting her help.

 

Another idea is contact a group called headway...  they specialise in brain injury and people who have suffered sah. they have meetings talking to others always help im not sure which hospital you were treated at but im sure they will get you in.

 

List all your symptom's and clear the air with the dr and hopefully get you back on the road to recovery....

another thing is to take up a hobby... if you can model make, where you can relax and make something you can be proud of.

 

I hope this isn't sounding condescending, I just want to help you break the rut you seem to be in at the moment... as you said you have no one to talk to and that's the problem.

All the best for now and good luck  Paul  

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  • 2 weeks later...

Hello all, I have just returned home after eight days in hospital.

 

A visit to the GP with crazy diastolic readings saw me admitted without delay, and the usual raft of tests showed an increase in the 'focal expansion' of the frontal lobe.

 

The consultant was very tactful and did not spare me the details, suffice to say this 'growth' of blood is continuing and the inevitable prognosis seems to be some gradual damage to sensory abilities, but more concerning is the effect it may have on personality.

 

The Consultant is arranging for some one to one counselling and stresses the importance of preparation, so I will do what is necessary.

 

Medication has been increased again, but due to the location of the blood it can't be operated upon, which I always knew - the feeling of being in a 'waiting game' is greater than ever now!

 

But I will keep looking at the routes of help which you kind people have listed, and as the sun is shining my mind is more on walking and tanning than what is going to happen!!

 

But no ice cream sadly... 

 

Ian

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Hi Ian

 

So sorry you have been back in hospital and your tests showed an increase in the 'focal expansion' of the frontal lobe. I really hope the increase of medication will help with your head pains.

 

Really pleased your Consultant is arranging for one to one counselling to help you cope and prepare.

It is so important to talk about things. I hope you wont have to wait too long for this to be put in place.

Remember we are always here for you too....good days and bad !

 

Yes the weather is lovely enjoy your walking and getting a nice tan

Take care and keep in touch.

Tina xx

 

P.s. one ice cream wont hurt ;)

 

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When I came out of Hospital my hubs got me a BP machine, so he tried it on himself to see how it worked and his BP was really sky high.

190  + cannot remember over what

 

We had my Sister staying from Spain and she said to hubs. "I suggest you see Doctor a.s.a.p. as that is higher than mine"  she suffers high BP.

Healthy lot we are. Doc saw him straight away.

 

I am telling you this as I was worried about him and you need someone to confide in and pass worries on xx pass on = less stress.

 

Coldplay Paradise xx

When she was just a girl she expected the world
But it flew away from her reach
So she ran away in her sleep and dreamed of
Para-para-paradise, para-para-paradise, para-para-paradise
Every time she closed her eyes   .....Keep Well Ian  xx and keep singing xxxx

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