headaches Headaches/Problems later in recovery.

[Vicki]

Hello everybody, my name is Vicki and I had a subarachnoid haemorrhage in 2014. Please forgive my posting style as I’ve never done this before, so I don’t really know what I’m doing!

Also, apologies for only just joining because the truth is up until now I had a good recovery. 

 

I’m just wondering if any of you have had any recovery issues, in particular bad headaches, later in your recovery.

I had the initial recovery slowness, the feeling of a drip of water running across my brain,  I still have what I call ‘slump’ days,  but in the last year I’ve had increasing headaches on the right hand side of my head, not migraines (I get them too and they are different.)

 

The headaches are increasing in frequency and severity. Initially I put it down to my shift pattern but it’s come to light recently but even when I am relaxed well rested and well fed these headaches are still occurring. I have seen my GP and I’m seeing her again today. I’ve started a new medication which seems to be helping somewhat but not entirely. 

 

I’m also getting nosebleeds with these headaches.  My GP seems to think this is unrelated but I feel it probably is very related. My operational team at work want me to be referred back to neurology and I think I will be asking my GP for this referral today. 

 

I understand everyone’s recovery is different,  I have now included my GP and I will be seeking further clinical advice from the experts, and I’m not looking here for that kind of advice from yourselves, but I’m not sure why am developing these problems five years after the haemorrhage.

 

My skull plate  is the standard titanium with three bolted screws and a mesh also. Apparently I’m only one of a few people to have the mesh inserted, and I know there has been lots of media chat about these meshes I’m not overly concerned about that, I may discuss it with my neurologist.

 

It’s just the timing that I’m confused about…  why am I getting such bad headaches now five years later. Are any of you subarachnoid survivors who have had a late onset problems, symptoms, or worsening issues. My last three yearly scan showed absolutely no problems, no further aneurysms, so I’m not overly concerned about that, although I may ask for the next one to be brought forward.

 

I will check back with you later assuming I can figure out how, I’m trying to see where the replies are and the tabs are, this is all very new to me so apologies if it looks as if I’m ignoring you, I’m not!

 

 

[Winb143]

I seem to have a small nose bleed in mornings and a bad head but nothing that a paracetamol wont clear up but see a Doc always as none of us are medically trained.  It will put your mind at ease.

 

I put mine down to a heavy sleep...what with all the pills I take and thinners but go see Doc and ask the question it will put mind at ease.

As it must be worrying you and we need a care free life when possible.

 

Wish you good luck and get any worries and fears you have put to rest xxxx  

 

Allay all fears ..and get on with living a happy life  xxxx 

 

Good luck at Docs xxxxx You know it makes sense  xxx

 

 

 

[Chelle C]

Hi Vicki,

 

Welcome to BTG as we all call it,

 

Sorry to hear you are having problems 5 years down the recovery road, 

 

You have done the right thing by seeing your GP, I still suffer with headaches, I had my SAH in 2014 too, i take paracetamol for them, like you i also suffer with migraine this has only been occurring since my bleed, unfortunately my GP won't prescribe anything for migraine for me.

 

Strangely enough I had a couple of nose bleeds at the beginning of July where I had a bit of a headache, I actually put it down to me having a bit of hayfever and blowing my nose so much, I was at my GP this morning and he basically dismissed it when I told him about it,  didn't seem particularly concerned that it had happened or maybe he was just in to much of a hurry to listen as he was running late.

 

Headaches are a very common legacy of SAH, but anything that doesn't go away with normal painkillers or appears to be getting worse should always be checked out, I understand your worried but try not to get overly stressed about it ( easier said than done, I know )  as that could make it worse.

 

Sometimes as well, if you are overdoing things your brain has it's own little ways of letting you know it is not coping with what you are doing, sometimes you can be stressed without showing any outward signs of it, that can also cause headaches, 

The other thing i would ask you, are you drinking enough fluids, water is your best friend, it really does help headaches if you make sure you are keeping yourself hydrated, I know if I don't drink enough my headaches seem to be worse, it's just a thought.

 

Anyway I hope whatever is going on with you is dealt with quickly, so as to put your mind at rest.

 

Look forward to hearing how you got on with your GP.

Take care

Love 

Michelle xx 

[Vicki]

Thank you very much Winb.  Yes it is becoming a concern, but even if it’s something bad at least if I can find out soon I can get it sorted out. Interesting that you get nosebleeds to,  mine or sometimes in the morning. I need something little stronger than paracetamol.  Thank you for your kind words, I’m off to the doctors later  xxx

[Super Mario]

Could be teaching your grandmother to suck eggs but get your GP to check your blood pressure as it could be related to the headaches and nose bleeds and nothing at all to do with your SAH. Always worth checking BP. In fact a competent GP should do that as a matter of course with the symptoms you are getting..

[Vicki]

Hi Super Mario, Indeed, is the first thing they checked, and my blood pressure is fine, and it’s been the same for the past 20 years so no issues there. No doubt they might keep checking it but touchwood that’s all okay. Never been a smoker, I do like the occasional drink but I’m a lightweight when it comes to alcohol so that’s not an issue either. Blood sugars are fine, cholesterol is fine, they have no idea I had the original haemorrhage just that it was probably always sitting there “ready to go.”

 

There is a history of stroke on my mother’s side of the family, quite a considerable one, so I dare say I’m genetically predisposed to them, so I’m feeling more that I will get some more thorough check ups done.

 

 My type of haemorrhage is apparently very common in drug users, who inject into the neck.  That’s not my thing either. I had my neck checked many times by different doctors nurses and consultants, they were thorough that’s for sure. 👍🏻

[Macca]

I think the thing to do I to go to a specialist. No disrespect to your GP, but they are not experts in your condition. Get your doctor to refer you to a specialist.

 

Better to be safe than sorry.  Stay hydrated. 

 

We can speculate for England but it's best that you get proper advice, which we can't give because we aren't doctors!

[Vicki]

Hi Michelle,

 

 Thank you for your reply, it’s very interesting a fellow 2014 survivor with some similar symptoms to myself.

 

Similarly my GP in the past few years would not prescribe anything from migraine but truth be told, my migraines started in 2003 and I’ve been using Migraleve over the counter which is now very difficult to get hold of (supply issues) but it works wonders...  doesn’t make me too drowsy and I’ve been able to continue working.

 

These headaches I’ve had which have worsened and become more frequent are different to my regular migraines.  I’ve been trying to think of a good word to describe them, but I can’t as yet. Nothing I would post here anyway 😊

 

 Water definitely helps and I do try and remember to keep drinking it with various time-line bottles etc but there are some days I don’t drink as much water as I should.

 

 You’re absolutely right, our bodies let us know when they are unhappy and I do like the holistic approach to health.

 When these headaches began to increase in frequency and pain levels I began to write a diary and on Sundays there are patterns between the pain and my shift, or  whether I had eaten, whether I had slept enough etc....

 

However, back in June, I had three days away in Devon with friends, I could not have been more relaxed and yet I woke up with the most dreadful headache, perhaps the worst I never had (no alcohol involved!)  and that’s when I realised that if my headaches were that bad even when I was that relaxed something was definitely not right.

 

Thank you, I think that you have reminded me I need to pay a bit more attention to the messages my body is sending me. xxx

 

 

 

 

[Vicki]

Hi Macca,

 

 Yes, and to be honest the more I’ve chatted to people this week not just here but through my occupational health at work, my asthma team (unrelated but had a check up by coincidence)  my welfare officer at work, I think this really needs to be looked at by my neurology team back at the hospital. Even if it’s just to rule out no problems in terms of subarachnoid haemorrhage,  then we can look at othet things.

 

As I say these things out loud this week I’m suddenly realising that things need investigating  and whilst my GP, similar to myself, tends to downplay things the more I talk to other healthcare professionals I think it’s time to get this checked out.

Let’s hope today my GP helps me with this today and gets done referrals underway. 👍🏻

[jess]

Hi there it could be lack of oxygen if you have asthma could be causing headaches xxx

 

I get terrible headaches if the weather changes in the heat I get more i also have brain zaps lightheadedness it's awful xxx

 

Try not to worry but ask to see a specialist xxx

[Vicki]

11 hours ago, jess said:

Hi there it could be lack of oxygen if you have asthma could be causing headaches xxx

 

I get terrible headaches if the weather changes in the heat I get more i also have brain zaps lightheadedness it's awful xxx

 

Try not to worry but ask to see a specialist xxx

Hi Jess,

 

I agree, sometimes getting fresh air does help, I do work long hours in an emergency call centre so that doesn’t always help! And certainly weather does affect my asthma as well as my headaches and if it’s okay with you I’m going to steal your phrase brain zaps ☺️ -  it’s exactly that. 

 

If I feel well enough later I will go for a walk, I do find that does help sometimes.

 

My GP yesterday could clearly see how bad I was and has agreed to refer me back to neurology so that’s good. I’m going to make some phone calls myself today, get another eye test and although it’s only been a few months since the last one, as they say “cross the Ts  and dot the iis “ if everything neurological is okay, we will look at what else might be going on. 

 

 

[weedrea]

Very wise to cross the T's etc. I had a period of continual headaches and in the end found out it was caused by sucralose. I'd started taking some supplements to try and help with my arthritis and ended up giving me a constant headache!

 

Fingers crossed that you find some answers.

[jess]

Feel free to have saying type them into the internet have a read about them as if you could tell you Dr exactly what you have they may be able to help xxx

[Vicki]

Thanks Weedrea, and Jess,  that’s interesting that it was caused by something that wasn’t on your radar so to speak. I did wonder if my headaches have been caused by something that I’m not aware of but I guess time will tell. 

 

 I spoke to my neurology team this afternoon, waiting to hear back from them. They are going to help me figure out a pain management plan. They feel that it’s simply part of what we’ve already established, that these headaches are part of the aftermath of having a subarachnoid haemorrhage, and for some reasons unknown my headaches are coming later in my recovery where as most people have them earlier.

 

Nothing more than that really but it means it’s a long-term problem but I need some help managing. I’m also going to have to do a little bit of trial and error, I’ve managed to figure out some triggers so far but other days what I think will trigger it doesn’t, ....and what I think are ‘safe’ activities sometimes trigger off bad pain. All a bit of a mystery. Thank you all for your input so far. 👍🏻😊

[Skippy]

Hey Vicki

 

Welcome to BTG.  I have a friend that used to be on here and she was clipped.  Ever since she has had pain at the clipping site.  She's been told that they may have trapped a nerve whilst putting in the plate and that, unfortunately, its something that she would now have to live with and cope with with pain management.  She does OK but there are days when it still gets her down that all this time after she's having to still take meds to cope with the aftermath.  I hope that they can find a way to help you manage the pain x

[Daffodil]

Hi

I wasn’t clipped, I was coiled but did have surgery for my Shunt and still get sudden pains around scar site still .

 

i am just adding to this thread that I think you should ask to be referred to a neurologist who specialises in headaches...the reason for this advice is that since my SAH 7+ yrs ago I have had a number of instances  of very sudden onset  symptoms which have included blurred vision on one side, hearing loss on one side, and sudden head pain.

 

Early on this meant often a trip to docs who sent me to A&E and then usual investigations( and yes I do mean LP’s as well]  to rule out further bleeds or problem with my Shunt . Each time I knew I wasn’t having a bleed. Roll on to last year and I paid to see a private neurologist for an appointment , it cost me £100 but he was brilliant.

 

He did neurological checks I have never had from my Neurosurgeon and as he explained it that ‘neurosurgeons fix inside the mass whilst his specialism try to figure out the lasting effects and the why for what a brain exhibits’ 

 

He diagnosed me as having instances of ocular migraines but that due to how my bleed damage is it now presented differently to a migraine or headache like I would have had prior to SAH. That made sense to me. When I get overloaded or over fatigued the symptoms of that effect can vary and make no sense and I have long come to think it’s just how the brain sends the signal on that day.

 

He said when I get headaches now the messages are a bit jumbled so present in a different pathway,  He recommended to my GP that they switch my low dose BP tablets to one that is known to also help with migraines. Win win, Best £100 I have ever spent. 

[Vicki]

On 01/08/2019 at 19:06, Skippy said:

 

Hey Vicki

 

Welcome to BTG.  I have a friend that used to be on here and she was clipped.  Ever since she has had pain at the clipping site.  She's been told that they may have trapped a nerve whilst putting in the plate and that, unfortunately, its something that she would now have to live with and cope with with pain management.  She does OK but there are days when it still gets her down that all this time after she's having to still take meds to cope with the aftermath.  I hope that they can find a way to help you manage the pain x

 

Hello Skippy, I’m so very sorry for such a late reply, it’s very rude of me I just didn’t get around to logging back in for such a long time. I am really relieved to hear this, Although I’m still waiting to see a neurologist, there is more discussion around tract nerves, the big nerves, the branch nerves.

 

So the Thinking is that it’s one of the facial nerves that’s going into the teeth and sinuses that may have been damaged/ disturbed / trapped  at the surgery site, which to be fair they did tell me may happen, and they also said it could be one of the optic nerves which may explain some of my issues .  

 

This may explain some of the problems I’ve had with the pain in my face. And like most of us have had a stroke, sometimes my speech is affected but that’s almost a separate issue. The headaches are still continuing. I’ve raised more serious issues such as epilepsy and brain tumours, but my appointment is still months away,

 

I met my brain surgeon face-to-face and he’s not rushing any referral through which in some ways is a reassurance. Thank you for what you said about your friends surgery operation site and the trapped nerve that offers me some insight into other peoples situations. 

[Vicki]

Hello Daffodil,  thank you so much for this reply, it’s so very similar to my situation and I’m so sorry it’s taken me so long to reply to you. 

 

Exactly this, my symptoms have come on later, And although my brain surgeon has written they are very different to my original migraines, he wasn’t willing to make a diagnosis, he is referring me to the neurologist so perhaps a different type of migraine? My GP advised they can change in pattern.  And what has triggered it? Certainly stress and tiredness doesn’t help but these headaches are coming on at any time, even on good days I always wait for them, because they are so unpredictable.

 

My GP mentioned them in relation to my menstrual cycle but again, there is not always a pattern there.  Nor is it related to eating or sleeping, although that does help if I’m better fed or rested. It’s all good I just can’t get a handle on it. The drug Topiramate has helped, It certainly stopped the nosebleeds within days, but that now seems less effective than in the beginning.

 

You have hit the nail on the head, my brain is essentially damaged from such a big stroke so maybe the pathways of pain are different to a normal brain, and everything is affected because the sensations are travelling around in a different way? Thank you for your advice, I have thought about going privately, something I would never normally consider but this seems to be taking far too long.

 

I love the NHS, and I work in it, but I need to know what’s going on. This is unlike me.  I emailed my specialist nurses this week, they are in no rush to refer me, which in some respects is reassuring but it means I am left trying to figure out what to do in terms of work.  Thank you for your advice, and I’m glad you got a resolution and reassurance 👍🏻👍🏻

[Skippy]

2 hours ago, Vicki said:

Thinking is that it’s one of the facial nerves that’s going into the teeth and sinuses that may have been damaged/ disturbed / trapped  at the surgery site, which to be fair they did tell me may happen, and they also said it could be one of the optic nerves which may explain some of my issues .  

 

Don't worry about the time it takes to reply - as long as you're getting the info you need.  What you've said above is exactly the reason my friend has the pain she has.  Hope you find a solution x

[Daffodil]

Yes don’t worry ever about speed of reply,

 

So one of the reasons I paid to go privately because I had a rogue locum at my surgery who decided to say I couldn’t drive unless I had another LP!!! Grr...so paying £100 seemed a sensible route to be able to investigate what was happening with the headaches etc and assured DVLA that I was sound to drive. neurologist trumps GP!  I’d already had scans as have them annually.

 

I think NHS care amazing for the most but if you can get seen to get checked faster then I have to confess I would do that now, they would always refer back into NHS/GP if you need more treatment for any reason but sometimes for speed it can make all the difference to peace of mind...as Win would say, we don’t do well on stress. 

 

For me the fact I am perimenopausal the neurologist seems to think that in the same way I used to get migraines when I started my periods, now I am coming to the end of them I am getting again but they show up differently in how they present.

 

Good luck and let us know how you go