2 years in and still have headaches

[VanessaW]

Hello everyone,

I hope you are all ok today.  I haven't been on this forum for a long time.  I had a non aneurysm SAH nearly 2 years ago now. I have managed to make a pretty good recovery and return to work as a doctor.

 

I still get periods of bad headaches though and some nausea.   I think that I cannot expect more recovery now, I seem to recall the neuro team telling me that you get most of your recovery in the first 12-18 months.

 

Do people agree with that or are your experiences different?

 

I have started to get a bit depressed about this having been in the midst of a 6 week headache which at times has made me contemplate a trip to A&E.  A recent MRI was clear though, so I don't worry that something is going wrong again.   It makes life difficult doesn't it, I never miss work, but I still feel quite often.  I am grateful to have made the recovery I have, but people around us don't realise that you can still feel rubbish years after one of these events.

 

Statistically as far as the hospital is concerned I will have been counted as a full recovery.  It's just not true though, apart from headaches and nausea, I still cannot face going on a plane, I can't drive long distances and I cannot do as much exercise as I would like as it makes me sick (I used to be an exercise maniac).

 

Sorry for being moaney!!!!

 

best wishes to all

Vanessa

x

[Tina]

Hi Vanessa

Great to hear from you and never say sorry for being moany xx

As you say others don't understand, that yes you may have recovered but you still can feel rubbish years after....I am at 6 years and still have bad days. We totally understand and empathise.
 

I still get periods of bad headaches though and some nausea.   I think that I cannot expect more recovery now, I seem to recall the neuro team telling me that you get most of your recovery in the first 12-18 months.
 
Do people agree with that or are your experiences different?

I was told that too, but I am still noticing small improvements 6 years later. I think you do the majority in the first 2 years, but everyone is different.

Congratulations on getting back to work, you should be very proud of how far you have come in such a short time.
With your recent headaches, maybe you could go and see your GP and get a bit of time off to re charge.  

Take care and keep in touch...we are always here when you need to have a moan xx

[Daffodil]

Hi there Vanessa. Lovely to 'see' you back on. Firstly well done!! you have done a remarkable thing to be back working in such a high emotional and physical ( and worthwhile) role but I am sure the headaches is your brains way of letting you know it's still in the process of healing and to keep going easy with it. I am little bit ahead of you timewise but  my healing is still surprising me in strange ways ( often uncomfortably) and then I regain something I thought was lost but most of the things I do now I do differently. I am different.

 

I'm sorry you are having the headaches. I am sure it is hard to take regular breaks but do try to drink lots of water and eat well doing the job you do and if you can try and get that into your routine I am sure it will help. The exercise thing still frustrates me I just think there isnt anything left over in the tank once you factor in working (and in my case looking after the kids too), exercise of any kind just leaves me floored so I just do gentle walks, good on the brain and senses and helps keep the heart healthy.

 

I find anything that is taxing on the brain juices also brings me aches and pains and wobbly head as I call it. Just this morning I have been working on a complicated excel sheet at work and don't I know it!!! feel dreadful now but it will pass.

 

Your rational head and attitude will help you but good logic doesnt help everything and its normal to feel a bit fed up with constant pain and I really recommend talking to someone about the 'loss' of the person you were oh so familiar with, the one who could just do stuff without thought or penalty.....yes you are a 'success' story to the hospital, you healed and you are back at work so job done from their point of view but the reality as we all understand is that its all so very different.

 

Like you I still can't drive the long distances yet either but I have managed to do my first post pop flight and it was worth it to overcome the fear even if it was really hard, you will be ready when you're ready so don't beat yourself up:)  Keep taking those baby steps x

[iola]

Hi Vanessa,

I am 16 months from my NASAH and I still have periods of headaches. Its very frustrating and depressing.

I, too, become nauseous when the headache sets in. I push myself to walk because it seems to temporarily help.

I have been working for almost a year and I never feel 100%. All my tests come back normal so why should I not be 100%? I still suffer from vertico, which I just hate.

After I hit my 1 yr mark and did not feel great I decided to give myself another 6 months and I guess I will continue for, well, forever it seems.

Iola

[DawnS]

Hi Vanessa,

 

I'm sorry to hear you are still suffering with headaches and nausea. Being in pain is such a grind. I am almost 3 years post sah and I suffer regular headaches, I am currently on day 6 of one right now. I used to think it was my brain's way of telling me to slow down, but I've recently had 11 weeks off work and can honestly say that the headaches didn't reduce much. Being at home made them easier to cope with rather than forcing myself through the day with ibuprofen!

 

I still see signs of progress in my recovery now, though this is more obvious when it's something measureable. As an example, I have a game of mahjong on my Kindle. It used to take me 10+ minutes to complete one game, but recently I've played it again and was able to complete all 172 games in less than 4 minutes each. Do you have anything from the early days that you could revisit and notice the improvements?

 

I'd love to wake up refreshed, get through my day and have some cheer left at the end of it, but I don't and I can be a bit moody about that. Even my long-suffering eternally supportive partner doesn't always get it and can often take it personally when I have the grumps. I've explained a thousand times that I am not irritable with him, I just have no tolerance left by the end of the day.

 

With regards to exercise, my GP advised that I could start running again perhaps 18 months into recovery. Running keeps my depression away and has for many years now so it's important for me to be able to fit it into my week. He did strongly suggest that I start as a complete novice. I began with blocks of 30 seconds running and 90 seconds walking. Over time I have built this up very gradually and now I attend the gym 3 times per week. I run in blocks of 5 minutes with 2 minutes walking which means I can do 3K in 21 minutes. It wouldn't win medals, but I'm happy with it. I haven't been to the gym even once this week because I am far too exhausted. We had 2 friends for dinner on Saturday night, they stayed for 3.5 hours and this is me still paying for it. Now that is the kind of change that gets to me. What happened to being able to socialise? Please check with your GP before starting any exercise.

 

Well done for returning to work. It's hard when we feel so rubbish, but try to look at how far you have come and the achievements your have made x

[SarahLou]

Hi Vanessa,

It's lovely to see you back on BTG. I've not been around myself as much as I'd like to be, I've just not had the mental strength lately.

It's nearly 4 years since my SAH.

I'm sorry to hear that you're struggling with head aches.

I still have head aches and temple pressure every single day. Most I can cope with, I'll ride through them without needing any medication. They'll ease when I take quiet time out and rest. Very difficult though to do that whilst working. I have to get through my work shift and then give myself quiet time in the evening when I can. I don't think this will ever change, I'll always need to pace, adapt and adjust.

As for can our brains continue to heal years down the line... Yes, yes I believe that without any doubt.

I started a complete new career change 7 months ago, I love it, it floors me still, but I'm so, so glad I gave myself the chance to fight for something I'd wanted for so long. It's taking time to build my confidence but my colleagues have all been very supportive.

I do still get a mix of good days and bad. Sometimes my balance is awful and that's quite a new thing for me, I've a few other medical issues so I'm waiting for referral back to a Neurologist.

And yes, I too have some people around me that still just don't get it. I look fine, I should be back to how I was.

If only eh! I'm glad to say I have as little as possible to do with those people!

Don't give up Vanessa, you've done brilliantly, have a little bit more patience and understanding with yourself.

Be proud of everything you've achieved.

Take care,

SarahLou Xx

[Winb143]

I find we seem to have good days and bad days, perhaps we expect more from ourselves.

 

I wonder what all think on here, this is me talking to myself " hooray I feel so good I am getting back to the

old Win, keep  it up Win just walk a bit more, Yeah I will."

I get up the next day and feel so down when I get moaners around me !!  I want to say to them "shut it"

 

Surround yourself with happiness,  ignore moaners, laugh  when possible and sing happy songs.ll

 

We will all get there eventually just keep happy it really does help.  Vanessa you'll be known as the laughing Doc!! 

Be well All

 

WinB143 xx

[kpaggett]

Van,

I'm glad to see you back

 

Yes, I still see recovery at 3years post.  I had a rather substantial gain this year, actually.  I too was told the 18month-2year thing.  I also had a complete medical recovery, but I am NOT myself.

 

I have totally changed my life and do not work at all because I know it would make me tired and exacerbate the pains.  It is a luxury for which I am truly grateful.  I can't even conceive of doing a 14hour neurophys. experiment now.  It is not that I couldn't do it mentally, but physically...no.  My body has new plans for me and it took my mind a bit longer to catch on, but I'm totally glad I (my mind) did.

 

I've noticed that I tend to recover more at certain times of the year as well.  The other times are for brooding, longing, dissatisfaction, and even attempting things that backfire.  All of this prepares me for the recovering phases.  They come on suddenly and another window to my core is wiped clean again.  Cycles.

 

Each of us has to determine for ourselves what the cost benefits are to doing anything...a job, a party, a run, a hike, etc.  Some things wear us out that you'd least expect too.  Become aware, watch, be curious about your new self, it will tell you in subtle ways how to proceed in your new life.  Rest assured, you are not done with recovery.  As you heard from the other posts, people still see recovery after many years.  Who knows what will recover and when, but the body is a strange thing and I'd never underestimate it's power to move towards healing.  I know you've seen this as a doctor too.  Look at yourself through that lens, and watch the miracle of your recovery unfold!  

 

Hope to see you back.

[Macca]

Hi Vanessa,

I'm very much like you - nearly four years in and can't exercise to save my life now!  I used to exercise all the time - I was playing football the night before my SAH.  Also considered to be near enough a full recovery now.  I also have terrible days sometimes and feel guilty for saying so because I didn't want to be seen to be moaning when I am in a much better state than many others.  That's a great post from Kris above.  I went back to work but I decided to take early retirement - I did forty years and that's enough, I just now concentrate on enjoying my life and getting on with it.

 

Don't worry, it sounds like you are doing just great.  Being a doc, I've no doubt you are very conscientious, your hours are long and maybe your body is just telling you to ease up on the gas a little bit.  Listen to it.

Good luck -and glad to see you back by the way!

Macca

[VanessaW]

Thank you so much everyone for your thoughtful replies.  It is heartening to being able to receive this support, because there is so little elsewhere (aside from the few friends/family who have some understanding). I suppose I still haven't quite accepted that I am different now and I am still waiting to get back to who I was before, not that I am even sure what it means.  It is like chasing after a ghost.

 

Hope you are all having a lovely Sunday

Vanessa

xx

[Teechur]

I hear you. Mine was in Jan 2011 and I still have a daily chronic headache. Sometimes it is so bad it puts me to bed (Monday was such a day). Other times, like today, it's so light as to barely bother me. The only time it ever goes away is when I am running so I am fortunate that I can run again and have actually resumed marathon running. In fact, even on a pretty bad (not a BAD, but a pretty bad) day I can go out for a run hoping to reduce the pain. I have a desire to take a one year sabbatical and run at least 13 to 26 miles a day to see if I can disrupt the neuropathic pain patterns, since no drug has been successful in doing so to this point. 

 

I hate statistics because doctors who have never had an SAH write them. I heard a scary stat when I was in the hospital that only 15% of survivors lead a normal life after an SAH and I was bound and determined I WAS going to be one of those 15%. Well if anyone looked at me they would think I was one of them. I'm not. I have pain all the time and some days I can't get out of bed. I'm a teacher and some days I am super-teacher, and other days I look at my kids like "Okay, what? Who are you again? Say that again?"

 

Even simple sentences might be hard to get out and I have to go home and sleep before I can move on with my day or evening. I run a small business as a Fitness Coach and Trainer and I've dropped all personal one-on-one clients and teach only running groups and bootcamps because I can get them started and go home or ask an unpaid partner (who gets free training and my undying gratitude-heh, no pun intended) to take bootcamps. So my business has gone from growing to losing money. 

 

My doctor told me that in four weeks my headaches would be gone, and to rest for 4-6 weeks and then resume my normal life.  When that didn't happen I felt betrayed. My husband also felt betrayed. I finally had to tell him "My doctor only TREATS brain hemorrhages, she has never HAD one so while she can tell me that things should be fine, she cannot tell me how I feel. Only I know that."

 

One of the blessings to my life now is that I can't get angry (makes my brain hurt too much) and I can no longer get involved in other people's drama. One of your blessings is that you understand what it's like when a patient's recovery doesn't go for him or her as planned. The empathy for others with chronic pain, also, is HUGE now. I guess I'd rather not have the pain but I'm starting to have peace with it and the gifts that came with it and living my life around it, and my new neurologists still tell me that it will stop someday and I believe them!