Headaches and fatigue, finding the balance

[LocoTex]

Hello, I had a non-aneurysm SAH almost 5 months ago on 20th May 2019. I spent 16 days in ICU plus another week in the ward before returning home to continue my recovery.  

 

On the third day after my bleed I developed Hydrocephalus and had surgery to insert a temporary "brain drain" which stayed in place for 13 days draining excess fluid from my brain. There were a few other little complications (vasospasm, collapsed lungs etc) along the way but I won't go into all that now.

 

My wife joined this forum shortly after I returned home. She shared her experience on the forum of what had happened to me and shared with me the responses she got from others on this site.  I have found the information and experiences that people have shared with my wife to be very helpful and encouraging so thank you.

 

Three months after the bleed I returned to the hospital for an MRI and a review with the neurosurgeon team. They were happy with my recovery and were reassuring but did tell me that the MRI showed I had enlarged ventricles or larger than normal ventricles. They were not particularly concerned about this as they said they could be normal size for me but if I showed signs of altered cognitive functioning then I should seek urgent medical attention for Hydrocephalus.

 

I have a question which I am sure has been asked many times on this forum but I will ask again specific to my concern.  I had bad headaches for several weeks after the SAH which I took paracetamol for. Over time the headaches reduced rarely requiring pain relief. Five months later I still constantly have a very dull headache, I describe it as feeling thick. If I bend over or squat I get pain in the head especially if I have been active and tired.

 

I spent several weeks  after my SAH just convalescing, walking to the back yard to pat the dogs was my first big outing. I have gradually increased my activity over time. Now I physically feel as if I can do anything as normal but if I do exert myself physically I get increased headaches and fatigue which last for several days.

 

For example, three weeks ago I did a couple of days gardening which involved mowing lawns, trimming hedges. This resulted in bad headaches and fatigue and I needed to rest up to recover. More recently I shared the driving with my wife on a long distance holiday. Prior to SAH I could drive long distance i.e. 500-800 kms in a day with normal fatigue safety breaks without any ill effect.

 

However, after 2 days of driving about 500 km each day I have had bad headache and fatigue which has taken three days to ease with help from paracetamol and daily sleeps.  I am finding difficulty in working out the balance of what I can do or how much I can do.  

 

My concern is that if I overdo it I will delay my full recovery.  So my question is; if I work, drive or do activity which causes me to be fatigued and have increased headaches is this likely to delay my full recovery if there is such a thing? This question is important to me because I am a locomotive driver.

 

I am currently not allowed to drive a locomotive until at least 6 months after the SAH and not until assessed as fit for work by my employer's medical advisers. I want to make a successful transition back to work so I want to get the balance right in regards to how much I can push myself.  

 

How do I figure out what my limits are?  Sorry about the long story, but hard to give context and make brief. Any suggestions, advice, opinions are welcome. Thanks again to those who supported and encouraged my wife Veronica. When I was in ICU and very unwell Veronica was amazing and kept a vigil by my side keeping me connected to the earth when at times in seemed so easy to just slip away.  I wake up every morning and think "it is great to be alive".  Wishing you all the best in your journeys of recovery...

[ClareM]

Hi Locotex, welcome to BTG, glad your wife found us and that you decided to join too.

 

I had a very similar story to you and am now 4 years post bleed. I hate to tell you this but I couldn't drive 500km over 2 days even now, the concentration would probably leave me floored for a few days. I presume you are not in the UK as if you were your licence would have automatically been revoked for a minimum of 6 months after the EVD (temporary drain) placement. I actually didn't drive for 10 months post bleed and even now don't drive much.

 

To put it into perspective I drove 20 miles (admittedly in very heavy traffic on a motorway) a few months ago and actually cried when I got there. It was just too much concentration needed and when I got there I spent the whole day worrying about getting back!

 

I think you need to stop expecting so much of yourself, take things a bit slower and don't push. Start slow and gradually increase what you do. Expect to feel floored on a regular basis and try and learn from your mistakes.

 

I went back to work after 6 months but over the last few years I have changed jobs twice and reduced hours too. Even now I think I push myself too hard and should do less but I am a very driven person and it doesn't sit well with me cutting back.

 

On a positive note physically I have re gained my fitness and regularly run 5  miles three times a week with no problem, in fact it helps with the stress.

 

Good luck with your recovery just don't push too hard! Your brain won't thank you.

 

 

[LocoTex]

Thanks ClareM. Like you, my first drive was 30km to a neighbouring town and I was too exhausted to drive back. Fortunately Veronica was with me and she drove back.

 

 And yes the recent long distance driving did floor me for several days and I still have not fully recovered from that.  

 

Yes I understand I need to take heed of your advice and stop expecting so much of myself and not push too hard. That is the difficult part for me. I have always been very active, worked hard and strived to be my best at whatever I do.

 

I find it difficult to not be productive. Also, I have a renewed appreciation of life and do not want to waste a day which again makes it difficult for me to just do nothing and rest.

 

 I have found though that it gets to the point where I have no choice because I become so tired, headachy, generally feeling wonky, so I have to rest. So I guess I am learning my limits through my mistakes.

 

I am in Australia and was not allowed to drive a private vehicle until 3 months after SAH and not allowed to drive a commercial vehicle for 6 months.

 

Driving long distance over an eleven hour shift night or day is an everyday part of my work, driving a train and motor vehicle. My workplace has been very supportive and are keen to have me back on board and willing to allow me whatever I need to do to have the best chance of making a successful transition back to work.

 

My driving stamina certainly has improved over the past 2 months.  I am not yet confident that it will improve enough to make a complete return to my normal duties. What I am trying to work out is will pushing myself and trying to extend my capabilities i.e. trying to condition my brain to doing more, will that help or will it slow my recovery?  

 

I guess the answer is that pushing myself so much that I am floored for several days is not helpful. Finding the balance where I am keeping myself active and interested and still able to function the next day is what I need to do. Oh and I need to get back on my bike and ride regularly and go for regular bush walks to regain my physical and mental fitness.

 

When I was in hospital I lost 5kg and since I have been home I have gained 9kg, not a lot to worry about but having trouble doing my button up on my trousers! 

 

Anyway thank you for your response and thank you to all those who responded to Veronica.  Hearing those responses was very comforting, knowing that I was not alone and that what I was experiencing was very similar to the experiences of others. Having some idea from others on what to expect in regards to the path to recovery was very helpful and helped relieve me of fears.  

 

The first couple of months for me was a time of great vulnerability, feeling very frail, feeling many years older than I am, lots of pain and afraid it could happen again. I am feeling much more confident now thanks to love and support from family and  friends and thanks to the information, support and encouragement from "Behind the Gray".

Cheers, Terry. (LocoTex)

[Daffodil]

Hi Terry

I expect you will get a few more replies now, the site had a few technical glitches this week so had a little downtime but we are back now to normal service. 

 

I recall Veronicas posts and glad to have you join us as well and hopefully you’ll get some help and reassurances too. 

 

As clare says in the UK it’s quite different driving wise and after an EVD placement driving is stopped for 6 months automatically. I actually had my Hydrocephalus return after my SAH so ended up having a Shunt placed few months later which meant I couldn’t then drive for well over 15 months from when my bleed happened but tbh knew i didn’t have the stamina and attention for it. 

 

The first time i did I did a long journey as a passenger, I was in pieces and it took me days to recover afterwards and then I realised the cognitive efforts we are used to for familiar tasks is actually massive and when our brains are injured it’s going to take time. Night time driving with lights is still a challenge for me and I don’t do long distances as often. 

 

im going to use my favourite analogy for you, you need to start working out where your traffic lights are for fatigue triggers and what concentration does to your energy  and heed them. If you run a red there will be consequences...buzzing, pain, days in bed, so try to start plotting what is possible and build up slow and steady. If you do too much too fast then note that and try again but this time changing your pace or reduce how long you drive for . 

 

Multi tasking is not great for anyone I think but not us especially post bleed and Hydrocephalus effects. When you drive try to limit other stimulation like radio, conversation, introduce this gradually. Rest after every journey, find somewhere completely quiet and Be still. Also don’t underestimate the impact of vibration, movement and sound, it’s also using brain energy , you may want to see if ear plugs and sunglasses help you a little. 

 

Its really early days tbh But it slowly gets better, and no I don’t think exploring limits is bad but heed those warning signs and If you can that’s going to help you build a better adjustment to this new operating version of you. 

 

Go steady and Hi to V 

[LocoTex]

Thank you Daffodil.  I appreciate getting advice and gaining insight from other peoples experience through BTG.  You and others who have had a SAH understand what has happened and what is happening for me. My local GP's have very little knowledge or understanding of SAH or of the after effects. 

 

I think I have been in a bit of denial of the reality of the ongoing effects.  And maybe some guilt from not being able to do what I would normally be able to.  I think that has not been helped by my very lovely friends who greet me warmly with "wow, you look great" and other similar comments.  I feel that I then need to behave great when I actually might feel very wobbly. I know I don't want to bore them with complaining. So, I guess I can use BTG as a bit of a sounding board when I feel alone.  Because it is a lonely experience if you know what I mean...

 

I know I overdid it with my recent long drive but I wanted to prove to myself that I could do it and pushed myself.  That was a mistake and probably a dangerous thing to do also.  It is the 7th day now since returning from the holiday drive and I still haven't got back to feeling as well as I was before the drive.

 

It has also shaken my confidence so I feel a bit wonky and vulnerable today and have a buzzing vibrating feeling in my head and still have the persistent headache.  I am also a little nervous that the hydrocephalus is slowly building as my neurosurgeon told me that was possible but probably not likely. His comment was not completely reassuring.

 

So I acknowledge the lesson I have learnt. I will take it easy. Build up slowly and try to recognise my limits before I reach them. Thanks again. I am sure I will be on here again for more chats and reassurance. Hopefully I can offer reassurance to others in time.

Cheers, Terry.

[Louise]

Hi there

 

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

 

the thing about doctors they have to cover all basis I guess, but for us its always not reassuring...  If you are concerned about hydrocephalus re-occurring have it checked out it'll put your mind at rest..

 

Take it slow and easy and try not to prove to yourself by pushing yourself, but you will find that slowly it'll get better.... it is a fine balancing act..

 

take care..

[Daffodil]

Agree with Louise on the Hydrocephalus,get checked if worried , I think you know if things deteriorate, for me symptoms got  increasingly worse, like a dulling of the entire senses and then my balance went, it was very obvious when mine came back and I had been warned it was likely as my ventricles were badly damaged and had to have a EVD for about 5 weeks. . But get checked out if you are worried.

 

A scan can be done which would show any change in ventricle size but I suspect that you are feeling the effect of hitting a fatigue wall and it’s Horrid an day knocks confidence. Take each day. 

 

I think telling people is a good thing to be honest, being honest that yes you are looking well and physically you may have regained the weight you have lost but are just at the start of figuring out the changes and what’s different and it’s not easy and you don’t feel great .

 

Tell them you may need to take breaks and it’s not you being rude but building yourself back up with consideration for your hurt brain but to bear with you. You will become an advocate for what you need and don’t worry if you feel a little selfish with that, it’s ok to focus on you right now. 

[Chris G]

Hi and welcome,

 

I hope things improve for you as time goes by.  My only advice, which has become a mantra for me, is listen to your body.

 

Work stress and things that require concentration, especially with vision, like driving or watching a movie, were very taxing on me for a while.  I would usually end up with a headache.  But now, 4 years out, its not so much. 

 

Like Clare, I run often, and was able to start doing that again about 3 months after the NASAH.  Recovery takes time and patience.  Of course, if you are ever really concerned with something, please check with your doctor.

 

Best wishes,

 

Chris

[LocoTex]

Thank you Chris, I am learning my limits but also learning that my limits are gradually expanding as I continue to slowly improve. I find that if I "overdo it" I don't necessarily feel the effect during the activity e.g. when driving, but later that evening or night when I notice my headaches worse and then fatigue for the next 2-3 days.

 

So being aware of that now I am able to gauge how much I can do to avoid the effects. 

I had been feeling a bit isolated without having regular contact with my workmates so I joined a bushwalking and bike riding group this week.

 

I went for my first ride with them 2 days ago. We rode a relatively short distance, 35km along undulating country roads. I was the youngest in the group, (57), most were in their 60's and 70's. I was also the slowest but they stopped regularly to let the slower ones catch up. We met for coffee and chat afterwards.

 

This was really good for my confidence and wonderful to create new friendships. I will ride with them twice per week. Also , I was surprised to find I had no adverse effect following the ride. 

 

The things that do make my head and fatigue worse are intense concentration whether that be driving or other activity and also heavy physical work e.g. digging in the garden. Also anything that involves a lot of bending over increases head pain.

 

I feel now that I am managing all these things quite well. I still have a constant dull headache which gives me increased pain when I bend over but that is bearable and manageable.

 

I feel incredibly lucky to be doing so well considering how terribly unwell I was. I still am very doubtful that I will get back to work in my normal duties but I am not stressed about that. I am alive and other opportunities will arise.

 

Thanks again and to anyone new reading this I will repeat and reinforce what everyone has said in their messages to me and my wife who initially communicated for me on this site, drink lots of water, rest, listen to your body and be patient. All the best. Terry.

[Bri]

Hi Terry, 

Just read your post. 

I had a similar NASAH experience to you, (without the collapsed lungs) 

 

Am now five months post bleed and generally feeling pretty good. 

 

I still seem to have a minor headache most days, with a surge when standing up quickly or bending down low.  Same as you I believe. 

 

I am back to regular exercising without any problems, but I have accepted that if I physically over do things, I will suffer the consequences with A few days of funny heads and fatigue. 

 

Overdoing things can be concentrating at long meetings, or like last week, pulling out a tree trunk from the river that we live by. 

 

I am of the opinion that, although I am 95% back to normal, I may never get back to 100%. But will do as much as my physical condition allows me.  

 

You will find your own rhythm and learn your own limitations. 

Our brains have been through a hammering and getting through it all, is a day by day process. 

 

I hope you continue to heal as well as you appear to be doing, enjoy your time off work. You will be back in the cab before you know it. 

Regards 

Bri

 

[Macca]

Hi Terry,

 

Headaches and fatigue are an 'occupational hazard' after SAH.

 

What your body is telling you is that you've overdone it a bit and you need to rest and stay hydrated.

 

Everybody's timeline is different so there is no rule to it other than listen to your body, exercise well and rest well, keep taking on liquids at regular intervals - just like marathon runners do.

 

Take regular short breaks and stretch your legs for a few minutes and take a drink!

 

Good luck mate!

 

Macca

 

 

[LocoTex]

Thank you Macca, Bri and Louise, 

 

I haven't got much to say at the moment.  Just tired and very happy to be here.  If I didn't improve any further I would be happy with that but I still notice a little improvement from day to day.  And as everyone acknowledges, doing too much increases the headaches and fatigue.

 

I have my workplace medical at the end of November to get assessed for my return to work.  I am hoping to negotiate a slow and steady part time transition to work without having to commit to full time hours at any stage.  One step at a time.

 

Cheers, Terry.