Grateful

[Ben S 2000]

Hi All

 

It's great to have found this site which has so much helpful information  I had quite a few unanswered questions since leaving hospital which have been addressed by reading people's experiences.  Thank you to all who have took the time to post them. 

 

I experienced a perimesencephalic subarachnoid heamorrhage 3 weeks ago whilst cycling to work, initial symptoms were a rapid on-set headache and  neck pain that became worse as the day went on with vomiting.  A CT scan within A&E detected a bleed the following day so i was subsequently admitted and had an angiogram 2 days later and commenced a 3 weeks course of  Nimodipine.  Previous to the bleed I was fit and active 43 year old, cycled most days, non smoker, eat healthily etc. 

 

Since leaving hospital i've had a few minor health problems; acute pain in my glutes and lower right leg which has now resolved; severe throat infection; Tinnitus in my left ear and mild pain radiating down from the top of my head in to my left ear.

 

My main concern at present is that food taste's strange and have a permanent salty taste in the back of my throat which initially began as a foul bitter taste.  From what I can gather a few people have experienced this which may improve in time? My sense of smell has also been affected.  In context to what other people have endured I feel lucky not to have experienced any major physical impairment.

 

My hopes for the future are to get back to cycling asap as I have a mountain biking holiday planned abroad in November which was booked last year. If this is safe and whether I'll be fit enough is questionable?  So far I've been on a 8km walk and a gentle 20 min swim which wasn't particularly challenging.

 

On discharge from hospital medics advised waiting 4 to 5 weeks before recommencing strenuous exercise. They also provided me with a 6 week sick note but the thought of going back to work in a coup,e of weeks feels a bit premature so may need to get that extended by my GP

 

I wish everyone well on their road to recovery.  

 

 

[Chelle C]

Hi Ben,

 

Welcome to BTG as we call it, 

So sorry to hear that you suffered SAH, you will find a wealth of information here and we are all a big friendly bunch of people, it is also a nice feeling to know you are not alone after such an event.

 

We are not allowed to give medical advice as non of us are qualified to do so, we can however share with you information about our own experiences.

 

It is still early days for recovery wise that is, try not to push yourself to hard, make sure you get plenty of rest and stay well hydrated, staying well hydrated really can help with the headaches, 

 

There are a few members who are runners and into keeping fit, I'm sure they will come along and share their own experiences with you, although we always say make sure you take advice from the people who are treating you before doing any exercise.

 

The recovery road can be a bit bumpy at times, fatigue is one of the side effects, listen to your body and your brain and if you are tired, try to rest, as both your body and your brain have suffered this trauma and they both need time to recover.

 

Anyway try to be kind to yourself, I wish you continued improvement as you go along with your recovery journey.

 

You can also pop into the Green Room where there is lots of daily banter, you have come to a great place for help and support and you will make a lot of friends as you go along,  look forward to hearing more from you.

Love

Michelle xx 

[Winb143]

All what Michelle has put Ben and hope you feel a bit better soon ..Slowly does it and keep well watered/drink plenty of water  xxx

 

Scary stuff but when you can talk to others about good days and bad days it is getting it off chest ..

 

I have come on here all doom and gloom and left smiling .  Do not get too stressed as that is bad for us,  so sing, do anything to keep yourself happy.

 

Good luck on recovery and remember it is early days so listen to your body  xxxx

 

Take care of you !! 

Win

 

[Louise]

Hi Ben

 

warm welcome to the site, glad that you found us.

 

don't worry they will extend your sick line its still very early days for you, take things easy rest lots and keep hydrated, slow and easy does it.

 

take care

[Swishy]

Hi Ben,

 

So glad you found us.  You will be the one who knows if you are ready to go back to work.  Having a bleed is so different for each of us, we all have a different time line.  I went back to work before my Dr. thought I should, turns out he was right but after a couple of iffy months I was okay and still working.  I am quite a bit older than you 66, 64 when I had my bleed.  

 

Even though you feel lucky for not having any major impairments when there are things not working the same as they did before in our bodies it is worrisome.  You are early in your recovery, our brains are an amazing organ and will keep healing.  

I wish you well as you continue to recover and get back to your bike

 

Jean

[weedrea]

I was a similar age to you when I had my bleed (I was 39).

 

My advice would be:

 

- Drink lots and lots of water

- Have a lie down or nap, even for just 1/2 hr, every evening - does wonders to just give your brain a little rest for a while.

 

I had a whole year of this and still do it when stress levels are high

- Take it easy with work. I had 3 months off and then 3 months building back up to full time.

 

I'd recommend either Fridays off to give you a long weekend or Wednesdays. Wednesdays I found particularly helpful so that I was only working 2 days at a time

 

- Build up your own confidence regarding exercise. Whilst I can't prove it, I'm sure strenuous in the days leading up to my bleed had some effect. But that's my own thoughts.

 

I built up slowly, maybe only managing 5 mins walking at first (I was afraid to go out of sight of the house). I have found swimming to be an excellent, low impact exercise. I've recently gone on my bike for the first time, managing ~18 miles. Wonderful to have that freedom again (with a helmet of course!!).

 

I wish you all the best in your recovery.

Andrea

[Ben S 2000]

Thanks everyone for your kind comments and advice, it's greatly appreciated. 

[V.Mama]

My husband, like you Ben, was a healthy person when he had his NASAH in May (non smoker, walks and cycles, very healthy diet).   He doesn't have any deficits, and has been told he will make a 'full recovery'.  He has been impatient to get back to his walking and cycling, but his body has told him when he's reached his limit.

 

He has been on 20 km road rides and did a 15km bush walk two weeks ago, but that's over 3 months after his bleed.  If he overdoes things, he tends to feel it in the days following (increased headaches, fatigue, his head feels woolly and thick), not on the day, so building up slowly and listening to your body and brain in the days after will help you find your limit.  Like everyone says, stay hydrated.  

 

Our boys enjoy mountain bike riding, I used to but I'm not as brave as I once was.  We returned from a mountain bike holiday in Derby, Tasmania, just before my husband's NASAH.  Where are you headed on your long awaited trip?  

 

All the best with your recovery, it really is a long road, and our bodies and brains are amazing in their ability to keep on healing.

 

Veronica

[Bri]

Hi Ben. 

 

I  had a similar effect on my taste. It lasted a couple of months before I could appreciate the full range of flavours of the food I eat.  It got better as time went on.  Water still has a slight, bitter taste, although it's a lot better than before. 

 

It's been just over three months since my SAH, recovery is definitely frustrating, good weeks followed by bad weeks. The bad weeks usually follow a period of me overdoing it. Expect tiredness and  "funny heads" And as everyone says, listen to your body. 

 

Regards

 

Bri. 

[Winb143]

I was okay apart from walking and then everything tasted weird and smelled stinky.

 

Could not have lenor/comfort on clothes and other items but appetite is okay!!!  chocs and Costa coffee, water from tap is yuk !!

 

While typing this I have a cake and a coffee...and expanding so if you see a blimp in the sky say hello to me.

 

Good luck to all those who's brains are messing them about  ...When my head itched I bathed it in warm salt water it was heaven lol for a while.

 

Good luck to us All xxxx  Singing and smiling helps also 

 

 

[Ben S 2000]

Hi Veronica

 

Thanks for your message and advice.  It's Good  to hear your husband is back to pursuing his outdoor activities again.. Im in to my 7th week post bleed and managing some short bike rides, walks and swimming.  I've lost quite a bit of weight and muscle mass as a result of some appetite changes and distorted taste so getting back to my previous level of fitness is going to take some time.

 

We are going away in November to Lanzarote for the cycling trip.  I'm hoping I will be able to manage ok and that the food issues have improved by then. I've yet to buy my travel insurance, God knows how much that's going to cost after I declare my illness!

 

kind regards Ben 

 

 

[Ben S 2000]

Hi Bri and Win

 

My sense of taste changed after a week which was strange as food tasted normal initially.  As a consequence I could barely manage to eat anything and things I previously savoured became disgusting.  Fortunately this has improved considerably at the 7 week point.

 

However, I still have to eat very slowly or risk feeling sick and a lot of food tastes overly salty and my sense of hunger and thirst is non existent. It comes and goes but I also have an unpleasant taste when not eating for much of the day and the range of taste is different on the right side of my tongue to the left. I could barely taste anything on the left side at one point but this has improved recently also. 

 

Thanks for messages. Its reassuring to hear that people have had similar experiences and that they do recover. My next hurdle will be getting back to work in a couple of weeks providing my Occ health work assessment declares me fit. 

 

Kind regards Ben.

 

 

[Super Mario]

Ben, just a word of warning before you try to get travel insurance. You must get the all clear to fly from either your neurosurgeon or your doctor. I really do not want to put a dampener on your future plans but I suspect travel insurance at such an early stage in your recovery will be extortionate or not available.

 

A good reason why insurance should be taken out as soon as a trip is booked. That way you would be able to claim the costs in the case of an unpredicted event.

 

I travel about 5 times a year and an annual insurance for Europe only including The Canaries costs me almost £500 and that is 15 years after the event.

 

I really hope that your trip will be able to go ahead as you are obviously looking forward to it.

[ClareM]

Ben when you apply for travel insurance make sure you call them rather that doing online.

 

Have you had an MRI since your bleed? I to had a NASAH and had one at 3 months post bleed.  It found nothing and no cause for the bleed. I was given to go ahead to fly 3 months after my bleed by my neurology team and travelled to Spain soon after.

 

Because my risk of a bleed is actually less than most other members of the public - due to a clear MRI - I have never paid anymore for insurance and have travelled far and wide since with nor problems other than fatigue.

 

I am not saying your case will be the same but check. I think a lot of people who have had SAH with aneurysms that were clipped or coiled fall into a different category as I suppose there is always a chance theirs could rupture again. If there is nothing to rupture there is no more danger than anyone else who has never had a bleed. Or in my case less as they have looked at my brain and not seen any aneurysms.

 

Phone around and see, I'd be interested to hear how you get on.

 

Clare xx

[SarahLS]

I had my NASAH at the start of December 2017 and we had a trip planned to Amsterdam in mid March, luckily I had an appointment with my neurologist just on 3 months after the event and he said I'd be fine to fly, but that if it did cause problems then the Dutch health service is excellent (he is also from Zimbabwe and made a joke that the English spoken by the Dutch was probably better than his!) he also pointed out that if flying really was terrible then you could get back to the UK overland.

 

He also made the same point that ClareM mentions in that I'd had a recent MRI and definitely had no unknown aneurysms.

 

The flight from Norwich to Amsterdam was only 35 minutes and I was fine on that. We had a five hour flight (with lots of turbulence and altitude changes) when I was 8 months out and that was very uncomfortable and left me with really bad head pain for a few weeks after. This year's flights were fine.

 

I do declare everything on insurance and found the premiums were huge last year but lower this year. We're hoping to go to the States next year and I'm already dreading the insurance costs of that...

 

Definitely talk to your doctors before travelling, and even if you can't cycle Lanzarote is at least a break from everyday life and a good place to relax, especially if you are already back at work.

 

As for the taste buds, hopefully they will right themselves - I lost my sweet tooth initially and craved salty foods and even now on my bad days everything can taste slightly off, I use it as a warning sign I'm over doing things.

[Ben S 2000]

Hi super Mario, Sarah, Clare. 

 

Insurance quotes so far are around £100 which Is quite reasonable considering how soon it's been. This was the first company I called so may be able to get it cheaper.  

 

I had a NASAH, 2 CT scans and an Angiogram.  They didn't find a cause/aneurysm but ill be liaising with my neurologist and GP to ensure thay are happy with my travel plans before going forward with further arrangements.

 

Thanks for the advice everyone, regards Ben