Tina

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

Jan, try this link to a thread by Daff...... it may help you and others with pain threshold/management :

http://web.behindthegray.net/index.php?/topic/2645-useful-simple-pain-management-booklet/

Hi Jan 

Sorry to read you are in so much pain, bless you, hugs  xx

Horrible when you cant sleep with the pain too.

Roll on Wednesday for your appointment with your Doctor and hope they can get to the bottom of it  and help with your pain.

I have not noticed any difference personally, but then i am told i have a high pain threshold so probably not the best one to answer you   

I do know that if i am tired and not sleeping everything seems a lot worse and much harder to cope with. Especially if you are in the early days of recovery from your SAH, which you are, first 2 years i found the hardest xx

Take care and really hope you can rest and the pain eases up for you.

Love Tina xx 

Hi Lyn

A very warm welcome to BTG, so glad you found us

I had to have my ears sorted after my craniotomy because they were blocked with blood etc from my operation .  Not very nice at all for you as ear infections are very painful, so is sinus,

I have a ringing in my ears, but its not as loud as it used to be thank goodness. It did improve over time. In the early stages it is normal to get weird head feelings, it is your brain mending and settling back after a major trauma. It is still very early days for you in your recovery.

As you have found, there is a wealth of information on the forum, so please ask if you have any questions. Also feel free to join in the daily banter in The Green Room, we are a friendly bunch

Good luck for starting back to work in September. Just take it slowly and pace yourself,  particularly as yours is such a full on job.

Keep in touch and let us know how you are doing.

Take care

Love Tina xx

Happy 1st anni-versary Claudette

Here is to you and your resilience

Have a fabulous holiday !

Take care

Love Tina xx

Julie, bless your heart, i really feel for you xx

What an absolute nightmare for you and your husband to go through and to be messed about so badly! Let alone the added extra stress and anxiety it has caused you.... it's just not acceptable!

I have just been through something similar with ops being cancelled.

No phone calls back when they said they would, loads of chasing, phone calls, emails to get another date through. So very frustrating !

As Macca, Sami & Win have already said, please try and relax now you have a date...easy to say i know xx

When it's all over and you feel up to it, as Macca & Sami have suggested complain in writing.

Wishing you all the very best for your surgery next Thursday.

Thoughts are with you,

Take care

Love Tina xx

Hi Nicola

My heart goes out to you as i know just how you are feeling.

I was really scared of being left alone and also could not go outside my front door.

I tried a few times and just went to pieces, complete blind panic and tears, but i did not give up. I used a walking stick as my balance was all over the place, i also had double vision. First i left the front door wide open....i just stepped out and stood there for a few seconds, then went back in. I always had my mobile phone in my pocket.

I did this as often as i could on my good days. Eventually i would say to myself...ok,a few steps forward. I could see my front wall to my drive and the front  door was wide open.

After a few weeks i got to the wall and back it took me a few months before i could walk up the road a few yards to the post box at the top of my road. I could see it from my front door.

Nicola you will get there, it just takes time and patience and perseverance. I would get so frustrated and cross at myself. In fact i am feeling very emotional as i type this remembering.

From someone that ran their own business and was outgoing and a go getter, miss independent.  I felt like a total waste of space and failure. Felt i was letting everyone down.  My whole life was turned upside down after my SAH.

Things do get better, i wont lie and say i don't get panic attacks and anxiety now. I have good days and bad.

I think going to CBT is a great idea, i wish i had been referred. As Sami said above, talking to someone you don't know away from family and friends can really help. I had counselling  much later on and found it helped me just to offload without feeling guilty. Plus coming on this site was an absolute Godsend

I wish you well, you can do this   please let us know how you get on.

Take care

Tina xx

Posted on behalf of Subhem63

Hi Susan,

Yes I was at The RVI, but I had a SAH, coil and shunt fitted, 20th May 2016, my story (I know where tomorrow is...) I have to agree they were great, but I really like to know what  I can expect and when to expect it., thus the query.

I think one of the biggest problems about our illness is the not knowing what to expect. This is one of the reasons I like this site, because of all the people like you on it, who can help each other with all the questions that go through your mind. Thanks again , be well.

Subhem63

SAH 20/5/16

Posted on behalf of Subhem63

Hi Louise

Thanks for that, that was one of the reasons also that I asked, I received a letter from the DVLA saying they had not heard from my consultant regarding my driving licence, paperwork was apparently sitting on his desk.

Guess what , he was on holiday as well., so I thought if I could get an idea when the check ups would be I could tackle him about my DVLA form as well. Method in my madness, you never know it might work., worth a try don't you think.

Thanks for replying. Be Well.

Subhem63

SAH 25/5/16

Posted on behalf of Subhem63

Hi Kempse,

Thanks for that, yes indeed a day I hope I'll never forget, at least that way I know the brain cells are working, which won't be too bad , they never worked before, so I'm improving already. I hope the two lads enjoyed the 49 balls, I'll have to try and find out who they are when I get back to managing to hit a golf ball again.

Thanks again. Be Well.

Subhem63

Posted on behalf of Subhem63

Hi Sharlua,

Thanks for your reply, Like you say it seems to be relative to the individual and their recovery, regarding the follow up, everyone seems to have a different time spell, but they are all with a few months of each other.

At least I have a reasonable idea when to expect it. It's handy that others on the site have been to the RVI, chances are we have all been under the same people so will know how they work.

Thanks again. Be Well

Subhem63

SAH 20/5/16

Posted on behalf of Subhem63

Hi Peter,

I hope that all is working for you both as it seems you have been through it a bit trying to get the treatment you deserve.

Half the battle is knowing that everything is organised, and you sound like the type of guy who is organised, you and Irene obviously make a great team.

Good luck to you both. Be Well

Subhem63

SAH 20/5/16

Happy 1st Anni-versary Weedrea

Hope you and your husband are doing something nice to celebrate 

Wishing you well and enjoy learning the piano ! Go Weedrea 

Take care

Love Tina xx

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.

On 7/25/2016 at 14:54, Gemma B-B said:

Hi Jan,

 

Other people will probably chip in on this too but I would say that the one step forward and two steps backwards is pretty par for the course post SAH (I am now 18 months in).

 

I have days where I think I have got things sorted and have a handle on my issues and my coping strategies for them and then all of a sudden I will be hit with fatigue or forget something and I realise that actually I still don't have it all sorted.

 

I guess you just have to take it as it comes and be prepared to adapt and change around it. The one step backwards always hits me hard emotionally and makes me question things.

 

I have just finished my phased return to work and have settled on some part time hours and even now I second guess myself on them and wonder if I can cope with them or not. I guess I will just have to see how they go and be prepared to change if needed.

 

Good luck with everything.

Gemma x  

Posted on behalf of Gemma

Posted on behalf of Jimble.

Hi I had a bleed back in September 2012 - I was a social smoker smoking mainly when I went out drinking which wasn't often - which after the bleed I quit. Like everybody else I have had my worries over the years with odd sensations in my head but have ignored and lived a normal life and find everything that I've wanted to do in life - cycle exercise etc.

Unfortunately July 6th this year 2016 I was loading my car with DJ equipment and I felt like someone tapped my forehead on the inside with accompanying pain - it bothered me slightly but then I felt the familiar fuzzy neck. I went to a+e and after a ct scan it was confirmed that I had had another bleed. Similar place to the last one.

Reading other people comments on here it is extremely rare for people that have peremesenphslic (spelling ) bleeds to have another one - according to doctor that did my angiogram I am only the 2nd person he is aware of that its happened too!

As for the bleed I am recovering well after angiogram everything has heeled and I have no aneurysm's - my headaches are minimal now (2 weeks on) I am very surprised how well things are going this time (and relieved )

Anyway the parting words from the doctor st the hospital was - you are highly unlikely to suffer another bleed !! I notice somebody on one of the comments said something about if you have another bleed - but lottery tickets!! Well I did !!

Let's just say I will be going back to work! Am I worried that I will have another bleed it's always on my mind as it will be yours - but as before I will just get on with things and not let it stop me from doing things I want to do.

The only precautions I've taken is I don't go on roller coasters that go upside down.

I found this forum very supportive last time - any strange feelings I had I asked on here and people re assured me - so ask say if you are ever unsure

best wishes 

jim

Hi Megan,

Sorry you have had this set back when life had been pretty good.

It could be your barometer head is just adjusting back.

A few of us on here are affected by the weather and it causes a horrible pressure headache. Not nice at all.

I would definitely suggest going to see your Doctor and get checked out, blood pressure etc and for peace of mind.

Really hope your headaches and anxiety ease.

Take care and let us know how you get on.

Tina xx

Hi Richard

A very warm welcome to BTG. Glad you found us and the website has helped you with all the valuble information. BTG and the support from other members has been a Godsend to me.

I had a ruptured berry aneurysm, brain stem, 7 hours craniotomy and like Sarah have huge respect for surgeons. Saved my life twice.

The headaches lasted a long time for me but they did improve over time. As Jess has said drink plenty of water and rest up as much as you can. Your job is a very full on brain taxing job, so you will find your brain tells you to slow down   be kind to yourself.

Wishing you well with your on going recovery, hope the headaches improve and life gets back to near normal very soon for you.  It is also such a  worrying time for your loved ones, they must be very proud of how well you have done getting back to work to help others. 

Keep in touch and let us know how you are doing.

Take care

Tina.

Hi Nicola

A very warm welcome to BTG !

Glad you found us and look forward to hearing more from you.

Feel free to ask any questions & join in the daily banter in the Green Room and the Brain Games....we are a friendly bunch !

Take care

Tina xx

Hi Paul,

Wishing you well for the future and hope all works out for you and your family.

Take care.

Tina.

Hi Clare

Thank you for sharing this and your future follow up appointments.

90 minutes is a long time, glad you got through it and they were understanding & could see the fatigue setting in.

Hopefully as you say, at the end you will know your deficiencies and have coping mechanisms in place to help you with the job you love.

Keep up the good work Clare....huge admiration for all you have achieved

Take care

Tina xx

Hi Sherry

A very warm welcome to BTG !

Some great words from the others above

You are not alone....so glad you found us.

Feel free to ask any questions and join in the daily banter in The Green Room.

Look forward to hearing more from you.

Take care

Tina xx

Congratulations Neil

Thank you so much for sharing, as it will most certainly give so much hope to others.

Well done on all your achievements this past year. Fabulous news you are back paragliding !

Its great to read your anxiety levels are now much lower, you feel more confident, much more capable and a bit more like your old self again.

Wishing you well and look forward to your next update.

Take care

Tina xx

Hi Gail

Wonderful news all went well and the procedure a success

Rest up and wishing you all the very best with your recovery.

Take care

Tina xx

Hi Rachel

A very warm welcome to BTG, glad you found us.

Things will get better, it just takes time

I am 7 years down the line and I still have good days and bad days.

Fatigue is a problem, but I have learnt to know my limits and pace myself and listen to my body. Still catches me out though sometimes !

If your headaches persist I would definitely get it checked out by your GP as Win has suggested. Just for peace of mind.

Nice chatting with you and hope the link helps.

Look forward to hearing more from you.

Take care

Tina xx