Question on transient symptoms.

[Gaia_rising]

I'm in remarkable shape, I shouldn't be moaning, so, I'm not moaning, I'm asking a question.

The ruptured aneurysm, and drain/coiling were at the end of February, so I do appreciate I'm still in the early stages of recovery, I also accept that everyone's different, and everyone heals/experiences pain differently.

Following the near-constant, peaking headache, and the crippling fatigue, and waves of vertigo, I sort of plateau'd, and thought I was OK. I am OK, I'm a hell of a lot more OK than I might have been, I'm back at work full-time, and doing pretty much everything I used to do 'before'. (Except ironing, I'm not doing that, I could have died, I'm not standing in the kitchen for two hours every Sunday night, flattening clothes other people then yank off the hangers, and leave on the bed, that CAN stuff off.)

I've blogged that some of my symptoms are like that Culture Club song, in that they come and go. I'm making light of it, because that's my defence mechanism, it's a scary old time, and I'm making fun of myself, because, if I don't I'll fall into my own belly-button, or drive myself quite mad. (All the best people are.)

I'm currently sitting on one VERY numb bum-cheek, like the fabled Karma Chameleon, it comes and goes. (The numbness, not the cheek, my trousers would look ridiculous if the cheek suddenly dropped off.) I've also had issues with my left-sided peripheral vision, sometimes it's there, sometimes it's fuzzy, and I wipe my specs so many times I worry I'm going to wear them out, sometimes it's gone altogether, and I have to turn my head to see what's happening on the left side of me. (Between the irrational anger, and all the neck movement, I might as well paint myself green, and have done with it.)

The vertigo is pretty constant, with occasional peaks that mean I have to grab onto something, I've sort of acclimatised to that, and people are getting used to me suddenly stopping what I'm doing, and grabbing something, I fear for my poor colleagues if ever I get a big wave of vertigo, and there isn't an item of furniture to hold, because I'll have to steady myself on them, and they know I don't like to touch people.

What I'm asking, in my usual self-deprecating, overly-wordy way, is if anyone can give me a clue how long these things will last? I suppose I've already answered my own question, with the QI 'Nobody knows!' klaxon. I'm due an MRA at the end of this month, and an appointment with the Consultant Neurosurgeon roughly four weeks after that, I will ask him, I just wondered if anyone else had transient symptoms?

[Kirk5w7]

Probably all of us if we're honest. Like you said it's still early days for you, I thought I'd be back to normal by now, I thought that in rehab.but I've since been told I've done remarkably well coz not only am I still alive but I'm not in a permanent vegetative state ! Great consolation.

Yes everyone is different.

I will never work again and my GP says my BI hasn't affected my intellect.

The blurry vision thing comes and goes with me too, the vertigo was cured by the hospital doing the Eply manouvre but that doesn't always work.

I'm 3 years on now, and will always have problems with my peripheral vision on the right, I had ADEM, which affected my optic nerves.

The rehab consultant says its just a matter of managing my condition now, which I do mostly, and I still see minor changes from time to time.

Patience with these things is the hardest thing, I wish I could say stuff the ironing but that and filling and emptying the dishwasher and washing machine are some of the things that fill my days!!

So be kind to yourself, you are doing great, practice with everything is the key.

And a sense of humour, I can even laugh when I knock something over and break it, particularly when I was fully aware of the item, we're used to me shouting " it's Ok, I'm fine ".

My last MRI confirmed there was no change, which confirmed what all the Neurologists hoped.

So, I'm sure you'll be fine, keep on smiling xxxx love Janet x

[Gaia_rising in reply to Kirk5w7]

Thank you, Janet.

I'm an irresponsible, feisty, determined nightmare, hence being back at work full-time already.

I'm also a Mother to a brilliant 17 year-old boy, who has been pulled through the wringer, watching his Mum with tubes poking out of everywhere, talking absolute rubbish (nothing new there), and I know I can't wreck myself, because then the boy has to see all of that again.

I want to be 'me' again, but I know I'll never be exactly the same, so I'm accepting the 'new' me, and being thankful that I came through it relatively unscathed. I still have a numb bum, but, given the alternatives, I can live with that.

[sporan in reply to Kirk5w7]

Hi Janet,

You have described perfectly. I too am just over three years in from diagnoses and without out possible removal of tumour (stable) that causes the issues.

Humour (not aleays appreciated by others) and satisfaction making just small changes to the way I do things that help me cope.

Neuro psycologist can help too if you can get one.

From my experiaence and from reading the many posts here slow and steady is the pace and what non BI ers say is a long recovery time for BI sufferers is quick.

Breathing in is a bonus so I do the waking up bit (the hardest part) the rest I take as a bonus.

[Kirk5w7 in reply to sporan]

Hi Geoff,

Thanks for the reply. After the attention I got at the rehab clinic it was difficult motivating myself to keep going, but I did but one I've hit a downward spiral I'm having trouble climbing out of, I know I will but it's quite hard at times.

I found Reflexology and I try to go once a month, that lady really straightened me out, I feel like she helped fix all the screwed up bits in my nervous system, she does Reiki too and I'm always energised after a session, don't know if it's all in the mind but it works for me😀.

The rehab consultant told me my illness was a one off and not progressive so I couldn't understand why I would feel worse sometimes but a book on chronic illness from the Encephalitis society explained that's the nature of chronic illness, peaks and troughs, still hard to deal with when its happening to you, but nothing we should worry unduly about.

Hope you are doing fine ATM Love Janet xxxxx

[sporan in reply to Kirk5w7]

Yeah I'm doing OK. Had a couple of down weeks so didn't post for a bit, popped in and read a few but just really wasn't in the right frame of mind.

Just had MRI on Sunday so wait now for follow up letter to make sure all still stable.

Know what you mean about dropping into downward spiral, it's sort of self fulfilling for a while and hard to break free but a couple of better or good days will do it for me.

Do a bit of listening to light music or relaxation cd's/tapes and have a bit of a go on my guitar but as standard now nowhere near what it was sometimes has reverse effect... mainly on the ever suffering but wonderfully supportive missus.

Still as I say get the waking up bit done and we're away for the day, usually with the fairies according to my son and daughter

Hope you keep on improving and I too find more information better than the brush off the consultant sometimes gives. Seems like unless you're about to drop of the perch he ain't over interested.

Take the bestest care of yourself Geoff xx

[crestedbarbet]

You have a great attitude! I reckon no one can say how long any symptoms will last unfortunately. I wonder if you should see a GP in the meantime as a GP may be able to give you advice. Perhaps going back to work full time so quickly (unless I have misread your email, in which case sorry!) has slowed your recovery down if your job is stressful??? On the flip side, it gives you something to aim for, socialization and a brill excuse not to iron - can't you take your ironing in so someone will feel sympathetic and do it for you? Joke!!! Sorry, I've been no help at all but can sympathise with the 'how long will this last' and the ironing!!!

[Gaia_rising in reply to crestedbarbet]

I couldn't 'not' go back to work, work is where I exist, where I'm at my most productive, and I am still very productive, despite occasionally having a numb backside. They've been really good with me in terms of recognising that I now have some limitations, and won't be doing the intensive physical stuff until I've built up a bit more muscle mass...

I'm being very mindful, very watchful, and driving myself insane over-analysing every little twinge, ache, and change, I'm my own worst enemy sometimes.

My GP hasn't really been much help, but, to be fair, the communication with him and the hospital wasn't there, he had to ask me what I wanted the sick-note for when I was discharged. I was a good girl, and said 'subarachnoid haemorrhage', rather than 'Dur! Brain Surgery!' I'm a feisty git, and I think that's part of what's pulling me through, my determination not to give up, or give in. I have an open-ended return to the rehab outpatient place available, but I think that my symptoms are a hell of a lot more trivial than the limitations they're used to dealing with. (Also, she wanted me to make lists, and timetables, and colour-coded schedules, which drove me mad, because my working memory is unaffected, and I HATED lists before...)

I'm just blithering along, getting stuff done, and doing it well, I suppose my question was a daft one, I just wanted to know I wasn't on my own in being tip-top fine one day, and having a dead-leg, or a blind spot the next.

[sporan]

Urgh! Culture Club? Thought you wern't complaining

Think we all have symptoms that 'Come and Go' usually go when you need them to come at a consult or test or just plain forget to say at consult because something else has cropped up insteadd.

You could try keeping a diary of the symptoms, how often and what may have triggered it, tiredness, stress some random virus attack and take it with a list of the probs to your consult or GP.

Humour helps but sometimes can get wearing, at least thats what my wife says.

Take care and take heart, most if not all of us have been where you are now emotionally if not physically.

There is no timetable to BI recovery and the temptation is to look at others 'miraculous' recovery and judge our selves against that but most of those are young and are growing new brain cells anyway so the re-routing is a more natural thing. At my age the cells are dying anyway so it all gets bit more difficult.

Don't be so harsh on yourself and deal with each day as it arrives and try not to push yourself too hard because despite the 'push through it' crowd BI is different for each and every one of us and our stratedgy has to suit us and not 'them'

Oh and welcome to the forum as Frankie Howerd woukld say! (If you remember Culture Club you may remember Frankie)

Take care and sending you good thoughts

Geoff

[Gaia_rising in reply to sporan]

Mwahaha! I've been joking with colleagues that "I have my WonderWoman pants on, I can do it."

They're used to me being an unpredictable sod, so, when I put 'abnormal behaviour' on my risk assessment, they all groaned. I'm trying not to be harsh, and to let myself be, let myself heal, I'm just naturally given to irritability, obviously the old BI hasn't helped with that, so I find myself 'leaving the room' quite often, because the alternative involves a LOT of paperwork.

I think what's hit me most in your reply is the us/them thing, I've always been one on my own, and now, I'm even more so. I'm irritated when others try to impose their expectations or limitations on me, because I'm not them, I'm me. I have the pain threshold of a concrete bear, I gave birth on two paracetamol (yes, a bed IS more traditional.), and walked around with a broken bone in my hand for two weeks, insisting it was just bruised. What the BI has taught me is that I only get one 'me', and I can't keep throwing it around like it's made of rubber, I have to look after it.

Thank you for taking the time to reply.

[RogerCMerriman]

I think it's often quite hard to judge your self how things are going, it's easy to see a plato when it's still climbing, and the idea it will stop seems to have no real evidnce behind it.

I had vertigo and poor balance, the vertigo slowly has disapated it's not gone it is there but is not a issue, and after rehab my balance is vastly improved.

don't get me wrong, yesturday at the flower show, I was very wobbly and was at risk of falling a few time, mostly by being bumped by people, luckly I have mass on my side! and once I turned and looked down which triggered vertigo and the world span for a while, that was close!

[Gaia_rising in reply to RogerCMerriman]

Thank you Roger.

I do learn from myself quite easily, so I'm getting used to the fairly constant vertigo, and the increase in postural hypotension, I just don't move as suddenly as I used to do, because it sends me dizzier.

It was a daft question, I wasn't really looking for someone to say "It will stop in 6 months." or "It will always be like that.", I suppose I was just looking for reassurance that come-and-go wellness was 'normal', but it is 'normal' for neurotypical people, isn't it? I had good days, and bad days before the haemorrhage, so it's natural that it will be the same afterwards, I'm just a bit more vigilant, I suppose.

I was clumsy BEFORE the surgery, and, to the untrained observer, I'm sure that at the end of the day, I look drunk- as long as I don't look drunk at work, I'm doing OK.

[RogerCMerriman in reply to Gaia_rising]

I've found its worth now and then to explore what you can do. I've found that with out noticing I'm capable of so much more sometimes/always! Tend to pay for it next day but it's worth it.

And success breeds success

[Gaia_rising in reply to RogerCMerriman]

Precisely so, the only way I will find out what my limitations are is to explore then. I'm being careful and mindful, but what I'm NOT being is over-careful. Some colleagues are telling me to my face that I shouldn't be back yet, but they're not me, and they're not the wilful-tenacious-determined creature that I am. I can walk to work, so I do, I can work, so I do. Some people have said I should have stayed at home longer, but it wasn't doing me any good, getting out to work, and being active, both physically, and mentally IS helping.

[Gaia_rising]

Nearly there. I work in a school, so I'm back at work next week, full-time, full throttle, until the fatigue hits, which it will, at some point.

I've had six weeks 'off', still done some remote working, and attended a couple of meetings, but not the Monday-Friday 8-5 routine. I think that the lack of routine has been detrimental, as much as I rage about time being irrelevant, the floating-around-the-house-looking-for-something-to-clean really hasn't helped me. I've spent plenty of time looking for patterns, and connections between this and that. I'm more prone to fatigue around my special lady-time, my monthly inconvenience, and I'm more prone to irritability just before it- I don't suppose you need to be a doctor to work that one out.

I'm more prone to headaches and lethargy if I don't take on enough water, but that's OK, there's a toilet on the same corridor as my office. Smells, and noises still bother me, and it's going to be a bit full-on at first, having 1197 kids charging about the place, and colleagues who wear too much perfume, or don't use enough toothpaste. My physical strength isn't what it was, and that does bother me, but it's my own fault, for not doing any sort of structured exercise, I told myself to do it, and then didn't, I don't do as I'm told, even when it's me doing the telling. I'm 5' 9"-ish, and currently weigh 9 1/2 stone, it's horrible, I wasn't 'athletic' before, but I had considerably more muscle-mass than this.

I appreciate that some of you think I'm running before I can walk, and, while I thank you for your concern, I have to do things my way, I did 'build up' to full-time hours, over a period of weeks, but the anxiety about colleagues picking up bits of my work, and getting them wrong outweighed any fanciful idea that I might 'rest' in the afternoons, when I wasn't working.

The vertigo is manageable, and I think I now have a fair idea of the warning period I get between the first signs of fatigue, and crashing out, so I'll be able to speak to my manager about knowing if/when I need to go home, because I'm no longer safe to be at work. There's no facility to cat-nap at work, the room I used to use to wait for my Triptans to take effect when I started with a migraine has been re-purposed into something else. I have asked for an office of my own, a broom-cupboard would do, I really don't take up much room, but there isn't a suitable space anywhere in the school, the colleagues who share my office are well used to me just standing up, and walking out, anyway.

I'll be OK, I always am, it's in my nature to find a way over, under, or through whatever I'm presented with. Here's to half-term 1, may I not end up covered in blood, or vomit, and, if I do, let's hope it's mine, not someone else's.