An Introduction and looking for some tips

[Joe2384]

Hi, let me start by saying how happy I am to find a place to let out all my frustrations that no one around me understands regarding post SAH.

 

My name is Joe, I’m 24 and I suffered a Sub-Arachnoid Haemorrhage and a fractured skull as a result of an accident  in January 17. I was off work on two occasions for a total of 3 1/2 months but didn’t go back to full duties until 9 months after my accident 

 

For 19 months now I have had various symptoms that are causing me problems on a daily basis that make it very difficult to do my job and day to day activities and as much as I’m not out to get sympathy I do feel that people in my life don’t always understand what it is I’m going through.

 

Some of them problems I’ve occurred are:

 

Dizzy spells, often in big clumps over a week at a time and then they just go. Doctors are useless and just give me tablets that don’t work. They also gave me some exercises to try but not seen anything improve 

 

Headaches, these are on and off and some are worse than others.

 

Memory problems, I often forget things or jobs that I never used to before my accident. I’ve seen a neuro psychologist and they have helped but still have some issues.

 

Fatigue, this is ongoing, and went away at some point but returned after I came back from Florida in May and is with me all the time since. Often comes on after just an hour of chores or being at work as my job is fairly active.

 

Taste buds and Smell, this is a massive problem and stops me eating things like  fast foods and carverys. I have found I have to add spice to be able to consume a lot of food and doctors always told me it should be temporary but 19 months down and I’ve given up on it not being permanent.

 

Depression, I suffered a massive time of depression last year and was having massive mood swings and falling out with people. I managed to overcome that when I got my driving license back but then fee like I’m slipping back into it having suffered with ongoing dizziness and fatigue problems and not knowing what to do to help it.

 

I have asked about having another brain scan before but the GP’s have always said it won’t show anything. Has anyone got any tips to get round the frustration of arrogant GP’s or any of the other problems that I have been suffering.

 

I am concerned that I may not be able to do my job in the future due to my on and off dizzy spells which can make my job dangerous for me and that around me.

 

Look forward to any advice

 

[subzero]

 

Good morning Joe, and a warm welcome to BTG. 

 

You are in good company here, and while we do not give medical advice, you will benefit from the wealth of information within the various forums. Reading the experiences of how our many members have faced their SAH recovery challenges will be invaluable to you in understanding how to deal with your own recovery.

 

Sorry to learn that your SAH was caused by an accident.

 

The many issues you have mentioned are common to post SAH survivors. The severity and location of your bleed will obviously play a part in the extent and speed of any improvement.  You are young and your age could well be a help and a hindrance. It is understandable that you want to focus on getting back to where you were before the accident. You would naturally expect to recover quicker. 

 

Had your injury been a broken leg or arm, this would have been the case, however your damaged brain does not recover in this way. The harder you try in these early weeks and months the more frustrating recovery can be and these headaches, fatigue, memory issues and lack of self control will all become more prominent. Leading to longer set-backs and disappointment and yes perhaps even depression.

 

How quickly did you return to work and did you phase your return over a realistic period while being flexible if things were getting tough for you? During the first year post SAH, having patience and getting plenty rest are so essential to your progress. Your brain and body need that healing time. Did you have  Occupational Health support from our employer?

 

Did you discuss your situation with your colleagues. So often it can be the case that because you look ok to them, they are totally unaware of the major issues going on within your head as you deal with the pressures of work both physically and mentally. Getting them on your side can make a great difference.  For example ask them to tell you when they feel you are showing signs of frustration at your work.

 

Keeping well hydrated and taking that time to rest when you feel you are putting too many demands on your brain and body … these are so important.

 

Do you have a good support from family and friends?  Sharing your anxieties and fears with them will also help.

 

I am sure other members will share their thoughts with you. Please take time to delve into the various forums and also look in to the Green Room for some light hearted banter on things other than SAH.  It helps put everything in perspective when you know you are not alone in your challenges.

 

Take care, and don`t think of giving up. The more you understand about SAH the better your chances of dealing with it positively. Have the courage to accept that some things will take time, and other issues may require you to accept them and adapt your circumstances accordingly.

 

 

Subs

 

 

 

 

[Skippy]

12 hours ago, Joe2384 said:

Taste buds and Smell, this is a massive problem and stops me eating things like  fast foods and carverys. I have found I have to add spice to be able to consume a lot of food and doctors always told me it should be temporary but 19 months down and I’ve given up on it not being permanent

Hi Joe

My hubby had a near fatal motorbike accident 3 years ago and had the same problem with his taste buds - he only suffered bruising, not a bleed (I'm the one who had the bleed).  His taste is only just starting to get back to normal, but he still has to add spice and herbs to a lot of food for them to be "enjoyable" - meaning that otherwise he knows he's eating food but it can be tasteless.

 

He loved his real ale but now struggles to find one that either has a taste or tastes like he remembers - subsequently, he's not interested in going out much anymore.  

 

Its improving but slowly, I'm not sure if yours will ever return but patience, unfortunately, is key.

[Winb143]

Hi Joe,

I had an SAH and was out of it for an age, my short term memory is shot,  pleases hubby when he tells me again !!!

 

Tastes are foul like tap water and coffee made at home, wonder how long my family will keep getting me Costa coffee's.

I ask "Can you smell these sheets they stink, this coffee is foul" and so on  ha ha.  Living with it though. buy baby bubble bath same with shampoo lol

 

You will get there give it time and think you are a survivor, so welcome to BTG and when down come on here and share your problems.  Been there and it isn't nice but you can do this.

 

Do not listen to others problems for a few months.  I sing happy songs when down and it helps.  This site is a Godsend  to us who thought we were alone but find out there are others just like us and struggling.    

 

Good luck and try and be nice to family as they watched you go through this and do love you.

 

Only we know what we are going through and I cuss under breath more than ever lol,  and my Hubs and Daughter have been so good through it all xxxx  I played the OT's up when out so I am told. They said "we cannot do anymore for her say goodbye to her as she will never be the same, we suggest a Home"!! My hubby said "No way we'll take her home"  they gave me a balloon to hit in the air !! 

 

I can now walk 300 yards after being told I'll never walk again thanks to my Family xxxx So Cheer up and try and get happier we will get there.  

 

Regards

Win xxxx Keep a smile at hand and remember what brain has been through let it heal 

 

 

 

[Joe2384]

Thanks for all the replies,

 

Subzero- I returned to work initially after 2 months on light duties and short hours for 6 weeks which eventually ended up me not being able to walk in a straight line. The truth of the matter is that I didn't know it was a brain haemorrhage until about 5 months after the accident due to me being out of it when at the hospital and my parents were not aware either so I was not aware of all the damage I was causing myself by going back to work so soon.

 

I didn't even know it was a SAH until 2 months ago. I was then off for a further six weeks where I found it very tough being at home by myself for so long that I was tearing my hair out. After those six weeks I returned to work doing 2 hours a day and slowly increasing them until I felt good again. I eventually returned full time in the October having thought that i was back to normal. 

 

I have been asked by others about Occupational health but I can't recall if that was ever offered to me.

 

I have been very open with my colleagues since returning to work and most have been very understanding, even if they don't quite understand what i've been through. It is becoming harder though I feel for them to understand when I am now getting regular dizzy spells on and off, especially when i had to have a weeks sick after a holiday cos the dizziness was so severe, I got some people saying I was on sick with "jetlag".

 

The hardest thing at work is that I have always been a perfectionist and as I am more often than before making stupid mistakes it is so much more frustrating even when trying to avoid it at all cost.

The support from my family and friends has been great and they have always been there to listen to me, though sometimes it is hard to explain the ins and outs of my suffering when I look "fine".

 

Skippy- The taste buds problem is one that I have had to adapted to massively and has also caused problems especially since my partner doesn't like spice which means adding it to meals after cooking and not much during.

 

Winb143- Hearing that you got told you would never walk again makes me feel like mine could have been so much worse, and I glad that you are proving the doctors wrong. That is very inspiring.

 

[Kay]

Hi Joe,

 

Glad you have now found this place in order to get the support and understanding you need.

 

It's funny how the doctors so involved in SAHs seem to forget that our short term memories are very impaired at first, and most of the stuff they tell us we wont remember, I feel they should really try and pass on important information to the family members as well.

 

I think we have all been there with the 'you look fine' now so you should be 'back to normal' assumptions. What is normal pre SAH may differ wildly from what it will be post SAH, only you will be able to figure out what that is. I'ts a good idea to try and figure out your new boundaries, clearly with your holiday you needed a recovery period afterwards, it's about learning from those situations and adapting from now on. I can't do full days of activities 3 days in a row or it wipes me out for a week, I just have to take that into account now as my new normal for now.

 

Also just try to keep in mind that most people wont have ever heard of a SAH let alone know what it is, so most people wont be able to understand, which is what makes BTG so essential for people like us. Just being able to read through other peoples experiences and knowing your not alone in this can be such a big help.

 

Kay

[Swishy]

Hi Joe,

 

So happy you found all of us...I felt almost an immediate relief to be communicating with people who get it when I first found this site...I, like you, had and still have problems with equilibrium...I do think physical therapy helped me as my PT knew exactly what I was talking about and what would help...not make disappear for me, but help...I had a hearing loss in one ear that improved with time ..

 

I am so sorry you went without knowing what was going on with you...I agree with Kay in saying the doctors involved should know our short term memory often is not working right after a SAH...I can read all my hospital records on line and they say I agreed to this and that and they explained this and that....I do not remember any of it...

 

As you have read here people make recoveries that surprise their doctors, sometimes, but it takes time...time that seems to pass ever so slowly when you want to feel like yourself again..Sometimes the old self you want to feel like is a somewhat different self....but time will help show you the way...

 

I hope you read what others write as it is inspirational and fills me often with warmth and hope..

 

Take care Joe,

Jean

[Winb143]

I used to get giddy in the mornings and I was told to sit up and gradually stand all slower than we used to do things before.

 

Everything while getting better is done at a slower pace.  Never give up.

 

We are walking the same road and one day we'll get there ...Wait for me I'll be the one singing and complaining of backache. 

 

Night  and take a happy thought to bed with you, like your fav happy song  

[Joe2384]

Kay- The weird thing about my holiday is that I actually had a week after I got back to recover and stayed fairly calm and rested fully after 2 busy weeks in Florida but the day I set foot back at work I was dizzy by dinner time. Maybe it was the fact I went from busy to relaxed and back to busy again but what I do find is that when I get dizzy its for several days in a row usually and not just the one off occasion.

 

Swishy- I think I should try and get a copy of my records as Im sure there will be things I'm still not aware of. I do feel inspired reading other peoples comments on here. It is great that there is a community for a group so specific and I wish I had found it last year when my depression was at its worst.

 

Winb143- Thankyou, I think one of the hardest things for me is doing things slow as I have always been and organised and energetic person when it comes to everyday jobs and activities. It is very hard for people to understand how much harder it is to be your old self post SAH without them physically feeling what we are feeling during them struggles