Feeling a little freaked out!

Hello everyone!

Hope everyone is as well as can be! I am still a newbie here but just seeking a little bit of advice.

I am now 2 and a half years on from SAH and doing well considering the circumstances. Mine was a SAH caused by aneurysm and I've since been given the diagnosis of a rare spinal AVM which is the cause of the aneurysm.

Due to the complexity I have been told I am currently inoperable which is okay...... as I'm doing well and have recovered to as normal a daily life as possible.

Now...... the reason for my current freak out......

I have experienced pain and headaches almost every day consistently since the SAH and this is just the norm for me now. As a 28yr old this is something I've struggled with but am learning to accept and I'm getting to know and understand my limits.

But for the past 4/5 days atleast 2 to 3 times daily I have experienced a new type of pain. It is a very sudden onset headache and I suffer a chronic pain on one side of my head / temple and this also then resonates down to the base of my skull where my aneurysm is located. I do suffer pain in these areas but this pain is excruciating and is lasting between 5-10 mins at a time before leaving me tired and with neck stiffness. Other than tiredness and fatigue no other symptoms and I feel that after a previous false alarm I don't want to head straight down to A&E as I don't want to waste time and all my symptoms when searched point to migraine.

But the pain is such a new sensation and almost feels like a tearing / hot feeling inside my head.

Anyone else experienced anything similar?

I don't want to keep panicking and running for help each time I feel something strange =/ Its so tough! Also so hard trying to explain to loved ones why I'm suddenly immobile for 10 mins and at times barely able to speak through the pain :(

Thanks,

Mia

11 Replies

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  • Did you have a consultant while you were having your treatment? If so, why not phone his secretary and explain the symptoms and ask for advice. Don't ignore something that could be important. You should not be suffering pain like that.

  • I am still under 3 consultants - 1 of which I am scheduled to see on 2nd May - I just didn't want to be "crying wolf" as such....... I've had one false alarm with pain about 12/18 months following my SAH where I was having ongoing headache and fatigue and due to worrying I called the consultant and ended up going to the hospital after visiting my GP. All turned out to be fine and the aneurysm stable but no explanation was ever offered as to why the pain had suddenly returned and was lasting for so long.

    This time its the same pattern with the pain however its much more painful and a different sensation to before.....

    But reluctant to visit the docs and waste time as for the majority of the day in between these sudden bursts I'm fine and maintaining my normal daily routine of going to work, driving etc. It's just new and very odd!

  • I still think you should ring the secretary and tell her what's happening, then it's up to the consultant if he thinks he needs to see you or if it's OK to leave for a couple of weeks until he sees you. 'Crying wolf' is one thing....'better to be safe than sorry' might be more sensible!

    Hope it goes well.

    Jan

  • You're right..... and my work colleagues have badgered me all day to be safe and make the call. I'll leave a message with the secretary this evening and fingers crossed my little "freak out" is all for nothing.

    Its just so tough to know sometimes!

  • I don't think you need to be worried about "crying wolf" over something which could potentially be very serious, it's not as though you're running to A&E with an ingrown toenail, this is something complex and what many would term a 'chronic illness', you have nothing to feel guilty about and you shouldn't have to suffer through pain.

    Although the majority of your day is okay, you should get checked out, the last thing you want is for one of these 'episodes', if that's the right word, to occur at a time which might leave you vulnerable or at risk (Such as driving, crossing a busy road etc.)

    Alex.

  • Glad you will be doing it. How about phoning the consultant's secretary NOW rather than later so he might get the message today.

  • Hi Mia. Your symptom sounds remarkably like trigeminal neuralgia which strikes without warning on one side of the temple and recurs periodically throughout the day with no apparent trigger. The cause is unknown but it's suspected there's a trapped nerve issue. There are various drug treatments which can reduce the pain level to make it more manageable.

    Get yourself checked out by your consultant, but please do ask about this condition !

    Best wishes, Cat x

  • Hi, I'd concur with others...get medical advice. Doesn't your gp have a phone consult option? Or have you tried 111? (When I used 111 they had ambulance out for me within the hour). I think it would be different if it were a different issue....and I'm sure the docs all understand. Worth keeping a pain diary? And asking what sort of thing is NOT "normal" or "expected"....so you know when to seek help.

    Good luck!! K

  • Hi Miimiix

    I have a partially deflated annie still in my brain following stent insertion last year. I also suffer with ME, FND and migraine. But if I ever get new or unusually violent neurological symptoms or pain I go straight to A&E - because that is what my GP and consultant told me to do. Last time I went about 3 months ago I spent 5 hours there and had a CAT scan and all was well - but I had suddenly lost the ability to walk normally after months of being ok and with a brain bomb I couldn't be sure, not 100%, that it was just the FND flaring again. There was only 1 way to be sure - the A&E dept had the tools for the job.

    If your car dashboard suddenly lit up or your car started making a wierd noise when you were driving you'd run it into KwikFit or somewhere next time you were out...think your brain is just a teensy weensy bit more special ☺.

    It is countercultural with all this 'if it isn't an emergency pop to the chemist instead' publicity the NHS is littered with these days, but you must give yourself some positive reinforcement along the lines of 'I am not a timewaster, I have a serious and potentially threatening neurological condition.'

    Believe me, once in A&E you will see what timewasters really are out there...the medics will be relieved to deal with someone who actually needs their help and not an antiseptic wipe and a plaster!!

  • Hi Mia. I know what you mean about not wanting to panic and run for help if it isn't warranted. I feel exactly the same. I have a brain AVM that became apparent almost 30 years ago now. However AVM is a rare condition and combined with your aneurysm and SAH I don't think you should take any chances. Go and see your doctor or specialist even if it turns out it is only to ease your mind. You sudden onset of pain shouldn't be ignored. Don't let them fob you off.

  • Hello Everyone!

    Thankyou all so much for the support...... Its very hard sometimes as I don't want to waste precious NHS time when Its expected that I'll feel pain from time to time.

    You'll all be pleased to know I've made a call and left a message with the secretary for my consultant. The good thing was that I've now had some reassurance that my most recent MRI scan which was done approx. 4 weeks ago showed no signs of instability within the aneurysm and no change / growth with the AVM which has set my mind at rest a little.

    Despite a horrendous night with a lack of sleep due to being woken with the pain. I'm much more confident today and I've sought the relevant advice without worrying about wasting peoples time!

    I do keep a pain diary as I know someone in a previous comment mentioned this....... and I'm due at a pain management clinic with my neurologist next Monday to discuss the findings of this diary so this should also provide more clarity and reassurance.

    Then off to see the neurosurgeon again in a couple of weeks for plans on possible next steps of treatment!

    You've all been fab and were great when I just needed a little push and a little support yesterday so thankyou!

    Mia x

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