Karen

Hi Guys,

As many of you will know my medical history and that I have a neck left on my aneursym post surgery (which I'm being monitored for any change) ... but, I'm allowed to drive.

Out of interest, as it's a subject that has cropped up over the last couple of days, how many of you are driving with an untreated aneurysm/post SAH, as in being too small to be treated, but are being monitored?

So pleased for you Daff! Happy motoring! xx

As for shampooing twice or going to start the laundry when it's already started.... I'm practising 'mindfulness'. Sounds all new age but all it means is I try to really pay attention to what I'm doing in that moment. Again, it depends how tired my brain is.

Anytime I mono task I have more success remembering what I've done and actually getting something done. Multitasking stretches my brain and as a result my memory gets scrambled.

I do the same ... xx

Hi Tulip,

That's really good news and your Dad is a fighter! .... I can only advise, as to just focus on the day ahead, as each day can be very different.

Drifting off ... well, I did that, but knew who was around me and could hear them talking ... After the SAH, some of us are on quite a bit of medication, so a bit of "drifting" isn't too unusual.

Can I ask how old your Dad is?

xx

I can't say that I experienced this .... but interesting thread! xx

Hi Mat and welcome!

I would say that you really need to keep the lines of communication open with your wife and don't shut her out. You both need each other, as she will have her worries too. Talk to her, tell her how you feel and don't bottle things up until they become explosive. If tears flow in front of her, let them, as I'm sure that she will have some to shed too...it's a natural process after what you've both been through.

My kids were teenagers when I had my SAH .... dealing with teenagers isn't easy when you feel okay, let alone after a SAH. Is this a problem that can be fixed by sitting down and talking to them?

Emotions post SAH are all over the place, dealing with the trauma and what's happened, will it happen again and feeling totally vulnerable and frustrated are pretty common. I know that a lot of people on here, have experienced some type of post traumatic stress .... looking back, I can see that I should have probably asked for help, but recovery information just wasn't available or it didn't cover what I was going through.

You're not turning into a horrible person, as you've taken your first step to try to do something about it, by posting on here .... honestly, life will and does get better.

The following video link may be of help to both you and your wife and it may be something to watch together so that it can open up the conversation as to how you're feeling....it may also be good for your children to watch. It's called Patients Experiences of SAH - http://www.uhs.nhs.uk/OurServices/Brainspineandneuromuscular/Neurovascularservice/Neurovascularconditions/SubArachnoidHaemorrhage/PersonalExperiences/Videopatientexperiencesofsubarachnoidhaemorrhage.aspx

Hi Wem,

I had the opposite of you and had pretty prolific dreams heading towards nightmares just after the SAH... None of them made any sense and they were particularly weird/bizarre, so I often had to "wake" myself up from them.

After this point, I went through a phase of not being able to sleep until 4am, even though I was dog tired and it nearly drove me to distraction!

Once I regained a pattern of sleep, many months later, I stopped dreaming completely or just couldn't remember them.

Again, it was months before I started to dream "normally" ... It does make you wonder whether it is part of the healing process? It's something that I've always wondered.

Over the years since the SAH, I still have a pattern of sleep, where I can have prolific dreams, not remember anything or times where I just can't get off to sleep or wake many times during the night ...I'm 50 and menopausal and I believe that disturbed sleep can also be a symptom of menopause, so now, I kind of don't know whether it's the hormone factor also coming in to play?

xx

Kris,

I also found that post SAH I did not have any experience of dreaming whilst I was asleep and I seemed to go from very deep sleep (REM?) to wide awake with no interim stages.

I have assumed this is due to the fact that my traumatised brain was inducing very deep sleep to aid the recovery process? However in the last few weeks, I have started to experience slight recollections of dreaming on waking. I am taking this as another postive sign of my contined recovery.

Has anyone else experienced anything similar with sleep patterns/phases?

Wem

Admin Note: I shall add this to the SAH forum as it's a different topic, so please respond by clicking on the following thread: http://www.behindthegray.net/vbulletin/showthread.php?8624-Sleep-pattern-post-SAH&p=90669#post90669

Kris,

I also found that post SAH I did not have any experience of dreaming whilst I was asleep and I seemed to go from very deep sleep (REM?) to wide awake with no interim stages.

I have assumed this is due to the fact that my traumatised brain was inducing very deep sleep to aid the recovery process? However in the last few weeks, I have started to experience slight recollections of dreaming on waking. I am taking this as another postive sign of my contined recovery.

Has anyone else experienced anything similar with sleep patterns/phases?

Wem

(Topic split and added to the SAH forum)

Okay, I have read this thread and would agree that I wouldn't have taken Ibuprofen in the early months or years post SAH, as it also causes stomach problems in high doses/long term, plus I wouldn't have wanted to have taken anything to increase my blood pressure or pose a risk to my post operative state. This was through my own research and not by any advice from the Doctor, as there wasn't much advice at all!

I was always told to take Paracetamol and to only take Codeine/Opiate based painkillers in the short term, due to physical dependency factors or basically, getting "hooked" on them, plus there's the complication of having re-bound headaches.

I don't and never have had high blood pressure or problems with *high cholesterol, which is a stroke factor (*which is may be why some people are told to take Aspirin?) This is something that you need to ask your Doctor about, as each patient case post SAH will vary and there seems to be varying opinion within the medical practice itself and I've seen people on here who have been advised to take Aspirin, as their Consultant believes that Aspirin may be beneficial to the patient post SAH. http://www.neurology.org/content/54/4/872 If you "Google" Aspirin and SAH you will probably find more info on the research.

I used to take Panadol pre SAH for classic migraines/with aura ... I believe that Panadol Advance is faster working than normal Paracetamol, but it's a lot more expensive, but it did hit the spot faster than non-branded Paracetamol. https://www.panadol.co.uk/All-Products/panadol/panadol-advance-arthritis/

I think that it's a bit of a lotto situation ... you get conflicting advice/opinions from all over... and as per usual, not enough research has been carried out, so we kind of don't know, which way we should follow or who to follow?

I can only say what works for me and this isn't a recommendation at all!... and that I take a dose of one non-branded/Supermarket 500mg Paracetamol and one non-branded/Supermarket 200mg Ibuprofen and I find that this combination works well for me, over a short period of time...even if I get a classic migraine. It's been a bit of a trial and error thing with me over the years, as I do suffer from occasional nerve pain around my affected eye at times and this combination hits the spot and takes the edge off it. I was asked if I wanted to take a daily medication for nerve pain, which came with a lot more side effects than the pain killers and after having to take anti-seizure medication and the side effects that I experienced + withdrawal, which were horrendous, I said "No" ...

You need to consult your GP, as one size doesn't fit all when it comes to pain relief, especially if you have additional health problems to the SAH which need to be taken into consideration.

Interesting thread though and one that I'm sure that will keep rumbling on throughout the years with varying professional opinions!

Sorry, but this is a support group and none of us on here are qualified medics who can give you advice as to medical procedures. As far as I'm concerned, members have responded very politely and reasonably to this thread and have given you their time and personal advice by replying to you.

However, I do not like having to referee/moderate a thread that looks as though it's about to turn confrontational, as that's not what this site is about.

If medical/procedural advice still needs to be sought then please contact the Neuroscience Nurses at the Brain and Spine Foundation and they will be able to help with any questions that you may have. They can be contacted by phone or via email. http://www.brainandspine.org.uk/

Therefore, this thread is now closed and thank you to all that have participated.

Forgot to say Nic, that the Brain and Spine Foundation - http://www.brainandspine.org.uk/ have Neuro Nurses that may be able to help you with this question and you can either phone or email them.

Hi Nic,

I would presume that they just used the Heparin whilst your Mum was bed bound and perhaps slightly more at risk .. I'm not a medic, but I believe that Heparin thins the blood to prevent clots, but perhaps it's been stopped now because of the brain haem and because your Mum is more mobile, so less likely to develop a DVT?

It's something that you need to ask your Mum's GP/Consultant to explain, but I was told not to take any pain medication post surgery/leaving hospital that did thin the blood, such as Aspirin etc as it would slow up clotting and not advisable post SAH. Treatment seems to vary from place to place and I have seen on here, some members being prescribed Aspirin as well, so it's probably very much an individual case history/patient type of thing. Not sure if that helps!....but would suggest contacting your GP surgery if you're worried, but haven't seen anybody on here that went on to develop a DVT. xx

Hi Siobhan,

I had a third nerve palsy to my right eye, as had an aneurysm on the right communicating artery which affected the blood supply to the eye muscle, so my eye was out of alignment to the good eye. I was given glasses with a patch over the wonky eye when I was moved to my local hospital after surgery and saw the Opthamologist (not sure whether I've spelt that correctly!)

Think that I used the glasses with a lens taped over for at least 18 months, but can't remember the specific amount of time, as I had my SAH about 8 years ago.

The double vision is very hard to deal with and I lost my sense of depth perception ....i.e. with kerb height, steps, stairs etc

I thought that I would ask you about your eye, as I'm thinking that you perhaps should have been referred to an eye specialist too? I was also prescribed a lubricant/moisturiser for my eye and I still occasionally need to use one, as my eye would feel dry and sore.

On a positive note, my eye is hugely better now, not the same as it was before, as it's still slightly out of kilter and I do experience the odd bit of double vision when I'm tired, but with use and some eye exercises to strengthen the muscles or head turning, it's definitely improved over the years. xxx

Our emotions in recovery seem to be magnified by 10 some days

Sandi, I totally agree and you've summed it up beautifully. xx

Hi Siobhan and a warm welcome!

I also had severe double vision and had to use an eye patch initially/then glasses with tape over the bad eye ... think that the hospital said that they use the old glasses from opticians...you know the ones that have clear lenses that you try on for just for style/frame choice? Thankfully, mine weren't too bad for frame style, but there were some real humdingers in that pile that I had to choose from..looked as though they were from the 70's! Out of interest, have you been offered taped glasses rather than the patch, as it can be pretty uncomfortable?

If you can make the trip over to Dublin (great city, my Husband's family are from there and we've visited many times) then I can only say that you're doing really well, so have a great time and I think that you're very brave!

Remember to give yourself some time to heal as well and let your family in, as we all need the support .. enjoy that lovely squeeze from your Gran, Siobahn and let us know how you get on. xx

All steps forward are positive ones, even if we stumble along the way and boy, did I stumble and kept stumbling for a long time and I often thought that the fear would win ... but it didn't.

I can remember in my first year of recovery taking great comfort from certain quotes and one of those was “Success is not final, failure is not fatal: it is the courage to continue that counts.”

When I first started this site in my early years of recovery, I used to put one of these on the home page each day to spur me on, as I hadn't met many other SAH'ers at that stage to be able to "normalise" what I was experiencing and it was a very lonely time.

Daff and Wem, you're both doing really well. xx

Forgot to say, that I'm on a low dose of Propranolol (it's a Beta Blocker) for anxiety and to help prevent migraines with aura. I've been on it for probably 7 years now and it does help with both, but it isn't the complete magic cure. xx

Hi Daff,

I had my 2nd SAH nearly 8 years ago (had a sentinel bleed 3-4 years earlier) ... In my case, I can only say that the fear lessens with a lot of time and once you regain confidence that your body isn't going to let you down again....but it won't happen overnight and even if you had a bad experience today, don't let it put you off from trying it again...keep going lovely and you will eventually reap the rewards.

Just keep doing what you're doing, start to regain the confidence in yourself and you will get there too. Even if you have to force yourself to do what you've done today .... it will get easier, so never give up. You're doing really well in my books and well done for also raising money for charity, what a shining example you are!

I'm still experiencing recovery at this stage and am very grateful for that.xx

Admin note to all members and a reminder of our forum rules:

My advice - throw away the chocolates, the anti Ds and the ciggies

3. Do not offer medical advice.

Advice of a strictly medical nature should only be given by a medical professional. Whilst it is acceptable to mention any drugs that you take, or your treatment and your experiences of them, they should not be recommended to other users; this also includes herbal remedies, as many have side effects and can interact with prescribed medicines.

Would members please not advise another member to cease taking prescribed medication such as anti-depressants, which could lead to serious consequences. This advice should only be given by a medical professional.

Thank you.

Hi Andi and welcome!

That's fantastic news! Shall look forward to reading more.....

Welcome back Fern!

It must be great not to have the worry hanging over you! So glad it's all gone well and hope that the headaches soon pass. Take it easy...xx

If I have a long trip to do in the UK, which would be over 6+ hours, I'll do it in two parts and stay overnight at a budget Hotel at the half way point ... it kind of makes the journey more manageable and a lot less stressful. xx

Hi Kris,

I'm 50 and yes, since the SAH I do/have noticed that the time before my period and during, makes my dizziness/balance worse and I can "write off" about 7 days, as feel lousy.

I was on the contraceptive pill and my Doc has taken me off it, as I've hit the 50 mark. I've been off the pill for the last 6 weeks and I feel so much better for it. More energy, but am now experiencing very sleepless nights, due to body temperature, as am either cold or boiling hot and it wakes me up. So I think that perhaps I need a blood test to check my hormone levels. xx

Daff, I would try sending a reminder letter via snail mail, addressed to your Consultant and stress how difficult life is for you, without being able to drive etc and the stress that it's causing you with two young children. Hopefully this will get past the Consultant's Secretary, as I would think that she would have to physically show him the letter, rather than just passing on telephone messages.

Failing that, contact your GP and ask if they could contact your Consultant on your behalf?

Wishing you luck! xx