Feeling scared

[SarahLS]

I'm feeling a bit scared/worried tonight and rather than sitting at home stewing I thought I'd post here knowing that even without you all being able to give me medical advice I know you're all likely to understand.

 

I'm just a week away from the 1 year anniversary of my SAH/RVCS and in the past month I've started feeling really unwell again. Headaches that come absolutely out of the blue and affect the back of my head (so not at all like how my migraines used to be - but equally similar but not quite as bad as the thunderclaps from last year). I'm taking all the medication that has been prescribed, drinking loads of water/squash and sleeping 8 hours a night.

 

The only change in the last month is that I've been told my job is being deleted and they can't see any successor rights for me. I had seen part of this coming but thought there would be new less stressful roles I could apply for but that seems not to be the case. I thought I was fine with this, the job has ceased to be a passion/love and I was hoping to recover more (hopefully) and then job hunt next year. 

 

The problem however is twofold in that as the changes are all just 'in consultation' right now no one can or will give me a structure to how this will work timing wise (I could be in redeployment prior to redundancy in 2 weeks or maybe not until April) and the uncertainty is not helping. Then all my colleagues think I've been treated unfairly and so are feeding this back and I could find out I can apply for a new role - this sounds great but if I get this right I *have* to apply otherwise it is considered I am quitting and I get no help/payments and no reference.

 

I have seen Occ Health and the Union and know my employer is just about staying on the legal side of how they are treating me, although there are some issues to raise and keep track of for discrimination/constructive dismissal. I guess as I am listing this rationally I can see that it probably is just stress that is causing the problems but the pain onset is so sudden and scary I am of course worried that there is something else going on. 

 

I have an appointment with my GP tomorrow (and amazingly at such short notice I get to see the dr I've seen all year about the SAH) and it is only 10 days until my first NHS mental health appointment but right now I just needed to write this out and ask others who may have experienced similar symptoms to reassure me that stress is my main problem and that I'm not missing anything obvious.

 

Thanks for listening 

Sarah

[ClareM]

Hi Sarah

 

I read your post and really feel for you. Employers always stay just that close to the line to protect themselves with no care for the employee. Not much you can do in this situation except ride it out, they hold all the cards and will play them as required.

 

Regarding your headaches I would predict that they are due to stress but would suggest you get them checked out to be certain. Stress can cause headaches. I had a period of stress recently and found I was getting a lot of stabbing pains in my head. When I sought medical advice I was told they were most likely caused by stress and true to form when my stress lessened so did my headaches.

 

Try to relax, get some medical advice and take comfort from the fact that repeat SAH is very rare. I hope you get your employment issues resolved my only advice would be to do what is best for YOU, no one else. Stuff the company - they will only be thinking of themselves too!

 

Clare xx

[SarahLS]

Thank you Clare for the reassuring words, I feel you are right about the stress as I have woken up feeling better and wonder if that is because I haven't got to go into the office until Tuesday.

I will keep my Dr appointment today and just get checked out just to be on the safe side.

i knew this was the place to come for reassurance. 

[Daf187]

Hello Sarah,

 

I'm coming up to 2 years since my NASAH and the headaches I get do seem to correlate with increased periods of stress, and they have varied in intensity over the last 2 years. Of course, the usual 'seek medical advice' applies, but I hope all goes well. 

 

daf 

[SarahLS]

Saw my GP and it is probably stress but a few of the symptoms/ surgery tests were a little odd and so she's referred me for an MRI to check all is ok as I don't have a neurology appointment yet scheduled.

thanks for the support and advice 

[Winb143]

My surgeon told me not to stress and the only way I found not to was sing, but it stressed all around me out as I was sooo flat lol 

 

Keep thinking happy thoughts if possible, and try not to worry but I do not practise what I preach  lol  

 

Be well and hope all goes well xxxxx

[SarahLS]

It has been a while since I posted this and the past 3 months have been a full roller coaster.

My gp was also worried about the new head pain so sent me for another MRI before Christmas. Instead of hearing back from her my neurologist wrote back saying the radiologists had pointed out something that needed further investigation via another MRI with contrast dye.

Today I will hopefully find out what is going on as I have my neurologist appointment- I’m really hoping that as the last MRI was 10th Feb and they’ve not called me in earlier that things are not serious, and not just that the NHS is so swamped they couldn’t fit me in earlier.

 

As for the job woes...

the powers that be decided I was allowed to apply for a rights to post position after all. However there was only one post I’m physically capable to do and I’m not 100% sure of that as it is a job that only can be done on a pc with no variety of tasks and worse still I will be the only person who can do the job, no team, no support for the bad fog brain days.

 

Unsurprisingly my headaches and fatigue  have got no better but I felt I had to take a post where my immediate boss is understanding of my recovery. Also didn’t have to have the full application/interview process which was a stress relief.

 

thanks for reading, here’s hoping it is ok news later.

S

[Daffodil]

Sarah, really hoping it goes well for you, do come back here if you need to chat anything through, people will Try and Help.

 

i posted a link to a video I found about ‘flooding ‘ in the SAH hints and tips section which may help. I wish I had seen it early on as I have come to the rhythm of it only in the years that have passed since. 

 

We are all unique in our bleed impact so return to work for instance is a complex one as our bleeds are different, varying in scales and extent , damage in different places to equally unique brains and we all do different jobs...main thing I think is to talk and be open and I do believe if you are good at your job then people for the most want to find a way to make it work and keep you. 

 

Consultation and risk of redundancy is a hard thing especially post SAH, take more time to rest than you think you need and try to notice when you are getting close to overload maybe.

 

My sign i am about to run a red light is a very stiff shoulder and increased grumpiness. If I ignore that I can expect some head reaction that will no doubt leave me worried and unsettled but I’m a little more used to it now. I for instance lost sight in one eye for a while last year, had to get scanned, everyone panicked , but a lovely neurologist concluded it was my brain reacting to a migraine.

 

I don’t get the pain now from a migraine it seems  but instead it just switches bits off...misfires! BUT ALWAYS CHECK IT OUT they never mind. And try to find ways to relax in the middle of that. My trick is if it’s  not getting worse then you are probably okay and have to just sit and watch and breathe. Hard though. 

 

So Im really glad you are getting checked out . Good luck , I had frequent MRIs in early years at behest of Team and only recently got news I now no longer need an annual scan, I came to find them a positive thing and of course it gives a great baseline for your team of how things are. 

[SarahLS]

Thank you for that Daffodil, and for the link to the flooding video. It makes so much sense and sums up so many of my problems. Nice to have specialists backing up my requests to work early mornings not afternoons too!

 

I’m back from my appointment and still a bit confused the good news is that there has been no new bleed and they still see no signs of any aneurysms. However, on MRI scans with dye then some ‘unexpected fringing’ is showing up around the initial bleed site which they aren’t sure about. My case & scans will be taken to a big radiographer/neurologist department meeting and discussed there to see if any more light can be shone on it.

 

I’m also to call the neurology department if I get another spike of headaches or feared thunderclap rather than my GP now, and the same if I get any limb numbness or sight problems. 

 

I am simultaneously nervous that something is still amiss but relieved there is no new bleed, and also relieved that there is something still wrong to explain the headaches, fatigue and memory problems. I was beginning to think it was all in my mind rather than in my brain. The dr will write to let me know the outcome of the clinic meeting but for now will scan and see me every six months.

 

Now if only that nice weather would come back...

 

[Daffodil]

Sarah. You are welcome, glad it’s ok news and six months scan I will hope will bring reassurance. 

 

I have never regained full work pattern and now work mornings with one day off. Very different life, career trajectory than I had thought but it is enjoyable and purposeful and allows me to keep steady which is where I aim plus manage being a mum to teenagers and doing the odd social outing. Finding your new normal is going to take time. And yes good weather is better for us, rainy days and many of us can tell you the post sah head is a perfect barometer. X 

[SarahLS]

Back again and feeling a little like it is two steps forward and then one back.

The postman has just delivered the letter sent by my neurologist after the appointment at the start of the month and the diagnosis is now right frontal intercranial haemorrhage following recurrent thunderclap headaches, which is more detailed than any other letter which has just said haemorrhage...

 

however it is the p.s. that has me confused/worried 

“The radiologists plan to deliberate further between themselves regarding the appearance of persisting, pronounced enhancement at edge of the cleft left over from the previous right frontal haemorrhage”

 

I was hoping that as it had been nearly 3 weeks since my appointment where this was mentioned, and there were plans to discuss this in department meetings, that there would be some answers in the letter.

 

I know that no one here can offer medical advice but has anyone else had this diagnosis and can help explain it to me? Or can point me to a website where I can find out more?

 

I have a GP medicine review in about 5 weeks so will ask there too.

 

thanks as ever.

Sarah

[Super Mario]

Sarah, to the best of my knowledge the  consultants only meet every month or so for discussions on patient care so the meeting that will discuss you diagnosis may well not have taken place yet, hence the reason for no more information at this point.

You may well get more information and/or an appointment to see the neurologist/radiologist in the near future.

 

As your medicine review is only 5 weeks away your GP may well be able to give you an update before you hear anything.

 

Are you registered for online access to your medical records through your GP practice? I have found this useful as I am able to see my records including any letters from other parties.  

[ClareM]

Hi Sarah

 

I think consultants usually meet weekly to discuss cases, either your case has not got to them yet (sometimes there are too many cases to discuss and they roll some over) or they have discussed and feel it is safe to wait for your appointment to talk with you.

 

An inter-cranial haemorrhage is any bleeding beneath the skull and includes a SAH. The letter you have received is probably the one dictated after your appointment at the beginning of the month - yes they can take that long to get out. Consultants have to dictate them, then they get typed and then back to consultant for checking and approval then out to GP's and patients, using snail mail!

 

I hope you can manage not to worry too much, I am sure that if something had been discussed with the radiologists and found to need urgent attention you would have been contacted.

 

What I would do in you situation is call the consultants secretary and ask if he would be able to give you a call to reassure you. Our consultants get such requests all the time and they are not 'gods' they don't mind. Alternatively is there a nurse specialist at the neuro unit you could talk to for some reassurance? 

 

Either way please do not leave it and stress. They told you to contact them rather than your GP so I would go that way.

 

Give them a call today and get yourself some peace of mind. Good luck, keep us posted. xx

[SarahLS]

Thank you both for your input, wise words and for calming me down.

 

I think that I just over reacted to the letter, I think I either expected to hear nothing about the ongoing issue until my next clinic appointment or to get an answer. More uncertainty just threw me in a week full of other issues.

 

The letters I get from the neurologist are the same ones he sends my GP but I will ask her when I see her if she can explain the terminology further, I think it is just the word lesion that is freaking me - family/friends who’ve used this term have definitely had bigger problems than my headache/fatigue/cognitive ones.

 

Thank you again

Sarah 

[Winb143]

Hi Sarah,

 

I had to have another Scan as I had a seizure now I've suffered with Epilepsy since 14 puberty and I had a fit last February which was like none before.  I was like the girl who's head spins round xx

 

I rang my Epilepsy Specialist up and he sent me for a scan and the letter I had back was so scary it said I have had another 2 but small chronic bleeds,  but have healed themselves .  I saw the word chronic and was so so scared.  I am the one who always says no stress lol

 

Well talk about stress I was in full flight panic mode so looked it up and it said Acute is worse than Chronic.  I came back on here so pleased I only had a chronic bleed ha ha .  Before that once again I thought I was at Deaths door.  It is natural to panic  as long as you don't go into full flight mode as I did xxxx 

 

Good luck and Stress free unlike me ha xxxxx