Questions after my perimesencephalic SAH

[Irene]

Hi, I am new to this site after finding it when I decided to look up online for more information regarding my Perimesencephalic SAH.

 

 

I had my haemorrhage on the 9th September 2015 and feel so lucky I have not needed any intervention within the brain, I do get aches in my neck and behind my right my ear, which is brought on if I feel tired or I feel anxious. I do sometimes feel pressure on the top of the right side of my head too. All niggles and taking paracetamol does help. Is this the norm?

 

 

When I was in hospital one of the doctors said it was a benign bleed and I would be fine and just get on, well I do mostly, but every so often I feel totally down and wonder if these changes will be here for life. I guess frustration plays a big part. Missing driving doesn't help.

 

 

I have been told by DVLA that when my doctor agrees I can drive I am ok to drive while they do their investigations. I sent my paperwork in to them mid September and it hasn't got to the review stage yet. Has anyone else driven and do you sometimes get the all clear from DVLA anyway? I am comfortable not driving just now as I have a further MRI scan and consultants appointment in December. (They found I had some "signalling in the right cerebral peduncle" on my first MRI a week after my bleed. Has anyone heard of this, on the MRI it looked like a misty on the scan?

 

 

I am not so good with the concentration on these iPad screens so better call it a night. I would love to hear any of your feedback.

 

 

Thanks, Irene

[Winb143]

Hello Irene,

 

Not heard of peduncle perhaps someone will have heard of it on hear.. 

 

You sound like the norm, ie after my SAH I used to get niggles in my head and itchy also creepy crawlies thought I was cooty lol

It goes after a time.  I wish you well and am sure someone can advise you, so keep the faith after all it was only 2 months ago.

 

You are bound to get some  after effects xx  I used to wash my head in salt water but I had scars in it !!  but it seemed to relax me as my Mum always swore by it.  Good luck and think happy thoughts it has helped me get over mine xxxx

 

Wishing you all the best

Win xx xx

[Irene]

Hi Win,
Thank you for your prompt reply. I always feel I should be fine as others see me that way ,but, I do know I am not 100% and to be honest if I have to live with these niggles I class myself as fortunate. How some people have overcome what they have had to go through is just amazing.

 

 

My bleed started when I was in the shower. An instant headache at the top right side of my head and within seconds I was feeling it move down from there into my neck. My first thought was I feel terrible and I must get out and get some clothes on. ( I even didn't clean the glass down, a proof to myself how bad I was!) I phoned my husband who was working 3 hours away to ask him if he could ring me every hour to make sure I was ok as I wasn't sure if I was going to be alright.

 

 

He knew something was wrong and started home. He called me and I just wanted to wait for him. The pain was increasing into my neck and head and I was feeling sick, I knew it was not normal so packed an overnight back as I knew I would be going to A&E. Why I didn't phone an ambulance I don't know and as we hadn't lived in our new house long I didn't feel I could ask neighbours for help. Silly now. It could have been so much worse, but luckily I seem to be a small percentage who get these "all clear" type. The doctors admit they are still in the dark with a lot of brain issues as the brain is so complex.

 

 

The consultant is not sur what the "foggy" area is and he is presuming it was residual blood left after the bleed and hopefully the next MRI scan will show it clear. I am just hoping if it is clear he will say to go ahead and drive now and possibly fly. (We had hoped to get away for a retirement holiday as my husband retired fully in October and I had taken early retirement when we moved. It was a shock to have our travels curtailed so abruptly.

 

 

I have got lots of information from reading other people's cases and as we have had no written information from the hospital my looking online has been the only way of knowing if I was heading in the right direction. My consultant thought I was doing way better than he anticipated so that is positive, he did tell me it can take up to a year for recovery. I don't think others truly understand when I have a few hours of tears for what seems no apparent reason.

 

 

Oh, look at me rambling on, sorry, just nice to chat to those who have perhaps felt the same. I am blessed I know and am fortunate in finding this website.

Thanks for listening
Irene xxx

[ClareM]

Hi Irene

Welcome to BTG, hopefully you fill find a lot of help here as I have done. Sorry I like Win have not heard of cerebral peduncle, hopefully you will the all clear after the MRI. I had my NASAH in February and have JUST got my licence back. Mind you I had an automatic 6 month ban due to the EVD (for the hydrocephalus). The DVLA are notoriously slow so you will need to keep on at them.

 

All the symptoms you describe sound fairly normal post SAH. I still have days when I can't cope very well and just need to be on my own and quiet. Life is slightly different for me now but I think that is something we all have to accept to some degree.

 

I flew approx 12 weeks after my bleed, no problems at all, just very tiring. Hope you can manage to get that holiday booked soon.

 

Keep coming here, look forward to hearing more from you.

 

Clare xx

[Irene]

Hi Clare,

Thank you for your note on here. It is so good to hear all your experiences.

I do hope I can get driving soon, I feel a touch cut off. We do have buses around but nothing like jumping in your own car at the front door!

Yes the area in the brain sounds odd and I probably have the spelling wrong but fingers crossed it was traces of the original bleed and by the 7th December it will have dispersed.

Things certainly have improved I have to say, I remember early on I got the feeling my head would be jangling inside when I got anxious, now it just aches behind my right ear. My mother who likes knitting said she was going to knit me a hat wth bells on so when my head jangled everyone would know. That would have been great.

Thanks again for giving your time and making me feel very positive about the future and flying too. Shall let you know if we can get something booked.

I shall keep popping in,

Irene x

[Gemma B-B]

Hi Irene,

 

Welcome to BTG.

 

I had my NASAH in January this year and unfortunately ended up having to have a EVD and a shunt fitted for hydrocephalus. I have yet to get my driving license back as I need both medical and DVLA approval, both of which are taking quite a long time. Clare is right that the DVLA are quite slow to make their decisions. If they have said you are fine to drive with medical approval then it is worth talking to your consultant about it when you go for your appointment to see what they think.

 

In terms of the head/neck pain you describe - it sounds quite normal to me post SAH. I found I had to take painkillers for a couple of months after my bleed and I still get pressure/tension headaches when I am particularly fatigued/stressed even now. If there is anything that concerns you then do speak to your GP or consultant about it.

 

The 'few hours of tears' you describe also sounds familiar. After my SAH I would cry for almost no reason at all! In rehab I was told that this is all quite normal after a bleed and it has improved over the past few months.

 

Good luck with your holiday plans. I have yet to fly, however I have taken some trips in the UK since my bleed (my health insurance for abroad is very expensive due to the shunt etc. so we have yet to go abroad). I hope you get to go on your holiday soon.

 

Take care,

Gemma xx

[Winb143]

Also Irene, 

 

I say this to everyone. No Stress if you have pals or family who insist telling you there problems keep clear,  as  when

I went to see my surgeon he said No Stress.

 

There is a life after a bleed but keep happy,  I sing and drive people potty lol and I go to bed and before I go to sleep I think a happy thought and same in mornings.  Lucky I had a Mum and Dad who always made me laugh. xx

 

Good luck once more and always do what pleases you and hubby xx

 

God Bless

 

Win xx xx 

[Irene]

Hi Gemma,

Thank you for your feedback. It is good to hear things from you all as I now know I am not imaging all these things and shouldn't worry about telling people if I am tired, etc. I can see it is all part of the process of healing.

I will write down all my questions for the consultant when I see him in less than two weeks and fingers crossed I may be able to fly. Yes, insurances are terrible, aren't they when you have any medical problems. Mind nothing wrong with UK is there.

Once again I am so glad that you are taking the time out to answer my queries. i will think of my tears as cleansing the mind, I am so fortunate I haven't had to have any shunt or other procedures done. It must have been so terrifying having to go through all you did. Was that early days or was it after the first week?

I hope your recovery continues well.

Take care,

Irene x

[Gemma B-B]

Hi Irene,

 

It is ok - I always find it good to come on here and get reassurance off others who have had a similar experience. You are right that you should not worry about telling people that you are tired or need to rest. It is definitely all part of the healing process. You need to be kind to yourself and give yourself the time you need to heal.

 

Yes, writing down all your questions for your consultant is a very good idea. I went with a massive list of questions when I went for my 6 month appointment. Hopefully he will give you the all-clear to fly and you can plan that holiday.

 

Having the SAH was definitely a scary time for my whole family, as I am sure many on here will agree with. To be honest it was probably easiest for me as I actually don't remember anything for around 4 weeks after I had the SAH. I was on life support for a while and even after I came off that my memory was so bad that I have not retained any memories from it.

I had the EVD fitted for around 10 days after the SAH and was completely dependant upon it so the decision was made by my husband, parents and consultant that I would have the shunt fitted. After I had that done I was able to start recovering more and eventually come out of hospital. I have been in rehab since June and am currently working on returning to my previous job. A very slow process though!

 

Take care,

Gemma xx

[Irene]

Hi Win,

Sorry I just noticed a note from you that I hadn't answered. One thing I have found is my head can't deal with too much time spent on any devices with a screen, can't really be bad that one, but I do miss things.

I certainly am keeping up with positive thoughts and this weekend I am off to spend the weekend my beautiful grandchildren so the smile is going to be huge as I get loads of cuddles, I can read them a story and watch a children's movie. To top it off I go for an early night to bed.

I have read about your singing Win, I tend to sing in the car my husband always had to put up with me singing on Saturday afternoons when Tony Blackburn is on the radio with all the Top Twenties. I have not been as vocal as I used to but it will come back. I have a tired period in the afternoon so am not as vocal. I think he is enjoying the quiet just now.

I shall take notice of your comments and keep the stress down. I do notice that the slightest thing can just pull at the back of my head and I know to walk away or else a pain develops right below the skull at the top of my spine.

Thanks for the contact,

Irene x

[Irene]

Hi Gemma,

Gosh how horrible it must have been for your family to have to make those decisions and for you to have to go through it all. It is hearing people's stories of what they have had to deal with which makes me feel so thankful that I have had so very little wrong with me. I admire the hard work to get through everything that is thrown at you, because you just don't know what the outcomes are. To be at the point of taking up work again must be such an achievement but daunting. Do listen to your body and mind and don't rush anything.

I have to say I was so surprised when a doctor in the hospital explained to me that over stimulation would make me have headaches. I know that the brain does everything but really began to understand the rest it needed at that time. He said to me, just looking out of the window will make the brain work hard, as it makes your eyes move, takes in the images, lets you know what the objects are and gives you the feelings of what you are experience is a lot in itself.

Then on top of that it has a massive bruising and it's sore and needs to heal, because as well as that it is doing its usual function of keeping you walking, talking and living, let it rest. That day I closed the curtains over and just shut my eyes to rest. I really respected my brain and I am not taking it for granted.

So I must up and off. Going into town with Jim and having a spot of lunch out, then home to pack for the weekend to get my cuddles from the grandchildren while they are young enough to still enjoy them.

Look after yourself Gemma, take things slow,

Irene x

[Gemma B-B]

Hi Irene,

 

Yes it was definitely tough on all my family. I have been very grateful for all their care and support over the past year - they have all been brilliant. Not knowing the outcome of all this is something I still find quite difficult. I think it is my impatient nature as I would just like to know the outcome and get on with it. These things can't be rushed though.  

 

I too have been surprised at how much the brain does without us realising it. Everything we do involves the brain having to work in some capacity and I have definitely had to change the way in which I work to deal with the fact that my brain simply can't do everything it used to.

For the first 6 months or so after my SAH I couldn't really even watch the TV as it was too much stimulation and going to a supermarket was awful. These things have all improved with time though, it is just a matter of keeping going with it all. Even now I have to remind myself of these things and make sure I take the breaks I need.

 

Hope you have had a lovely time in town today. Enjoy your weekend and cuddles from the grandchildren.

Take care,

Gemma xx

[iola]

Hi,

I had a non aneurysmal SAH in April 2013. It is very scary and just awful. I had three angiograms and the third was 2 months later to make sure all the blood was gone. Even after two years I still have weirdness moments. Head hurts every time it rains. I hate the rain. When I'm tired I get dizzy and feel off kilter. A couple nights ago I cried because my head hurt so bad. Not the thunder clap headache but a migraine. It's been raining for days. Then the sun came out the next day and was fine. It's hit or miss.

You will jump forward and fall back again and then jump forward a little more. Healing is a time consuming process. Good luck and feel better soon.

Iola

[Irene]

Hi Gemma,

Saw you mentioned about the tv being too much stimulation.  I found that too, must say it is getting better. The radio can also irritate me, but only when I am getting tired.  My ears seem to get a swishing sound and anymore noise just aggravates me.  All these things seem to be normal so I am feeling it is all to be expected.

 

To speak to you all has been so good.  I feel rather contented and I will take heed of any tiredness and rest. My husband says he understands, but I really don't think he does. I feel I have to show I am fine and since he had a shoulder operation 3 weeks ago I have returned to doing everything around the house, which I think has perhaps added a bit more pressure on me as I certainly have noticed more frequent aches in the back of the neck and tears and unable to sleep.

Not being awful, but he has the scar and had the sling so automatically you step up to the plate to help out as he cannot do any heavy work for up to 9 months.  Thankfully he has started driving again.

We had a nice afternoon out and we shall have a nice weekend away with the little ones.

Great chatting with you,

Take care

Irene x

[Gemma B-B]

Hi Irene,

 

Yes I found everything a bit too much at first, but over time it has all improved. Now I can do things like watch the TV or listen to music, but as you said it has to be when I am not tired.

 

I think it is quite difficult for people who have not had this happen to them to understand - I would have found it difficult too if I had not experienced it. Even now I find I get surprised at how tired I get or other symptoms and I am the one experiencing it, so it is not surprising that others find it hard to grasp. Sorry to hear about your husband's shoulder operation. You are right that does add the pressure on to you. I know it is not easy but do try to take the time you need to recover as well.

 

I wish you both well in your recoveries.

Gemma xx

[Irene]

Hi Iola,
Thank you for your feedback. It must have been terrible for you with the amount of rain which has been about. I am just assuming you are in UK! I hope you have a few days relief. It must be the atmospheric build up, or whatever the science has to do with it. It is amazing how our bodies are tuned with nature.

 

I am back on Monday for an MRA to see if the blood has all gone, and to see if the foggy area has disappeared and hopefully was part of the bleed. I will find out the full report on the 14th.

It is the funny feeling inside the head and the tiredness which seem to be the main thing and yes it is not every day, it is fine for awhile then it's back, then good for a week, then back. So fortunate it is only that.

 

I hope you continue with progress and have respite from the rain.
Thank you again,
Take care
Irene xx

Oh Iola, sorry just realised you are from the States, I think you had the terrible rain before we got it in UK.
Irene x

[Louise]

I Irene

 

Welcome, glad you found us.

 

Not heard of that either (to my knowelege) but sometimes someone comes along who has.

 

When your at your appointment voice your thoughts on things that trouble you, my suggestion though is write your questions down and get someone to go along with you and they can jot down the answers.

 

Baromitar head that's what I call mine changes with the weather & its been bad bit of relief today though...

[Irene]

Hi,

Well I had my MRI on the 7th of this month and my review with the neurologist on the 14th. I took in my little list of ongoing issues and as far as my haemorrhage goes I am doing well. I have to admit it was good to hear him say that and because the white area on my MRI was not related to the bleed he was happy for me to drive. DVLA had already processed a letter to go out to him, but I am allowed to drive because of his consent. 

 

One thing he said, which put my mind at rest, was that even though it was a benign perimesencephalic SAH they, (the medical world), we're finding that it took a longer than they realised for patients to recover and to expect the tiredness, the strange head symptoms, the frustration and the tinnitus. I feel like a load has been lifted and I can succumb to slumping on the couch when I feel rather drained.

 

As for the White patch in the right middle cerebral peduncle, it is still there and the radiologist said a further MRI with contrast needs to be done. He didn't suggest a time scale so my consultant has requested it done as soon as possible in the New Year so he can review me at the end of January and hopefully we will have a better understanding of it. He said it could have been there all along but picked up only because of the SAH. He has said no flying yet until he can confirm for insurance what it is. But any of my ongoing issues have no relation to this area. He is being so clear and precise that I feel calm about it.

 

I wish other folk in my family were having a better deal. My brother has just been diagnosed with cancer and my father-in-law has reached a stage where he is being kept in medical care until he is at rest, he will be 97 on Tuesday. Certainly gives me others to focus on and reflect on how well I am doing and so thankful.

 

I have been grateful for being able to share things with you but even more so for the encouragement that has been given on this website.

 

May I wish you all a Merry Christmas with lots of singing Win!
Irene x