A pain in the head!

[Karen]

Afternoon all,

Just caught up on the posts ...... Yesterday's head/eye pain was a bad one and reminiscent of early days post SAH, so ended up doing zilch all day and spent the day under the duvet..... Thankfully, I seem to have reached the stage of not panicking now, as probably 6 months ago, this type of head/eye pain would have sent me into a panic frenzy.......it's still a place that I would rather not visit, as I find the pain pretty intolerable and there's not a lot of relief even with dosing up on painkillers..... it's worse than the pain from migraine.

I was kind of dreading waking up this morning and having more of the same and then I would have had to go to the Docs and get myself checked out.....especially with the eye playing up. Luckily, when I woke, it had eased considerably, but the eye is still feeling sore and I have a feeling that it's going to take a couple of days to get rid of it. It can be very frustrating at times, as I wouldn't expect to experience this level of pain at this stage......from the medics point of view, I should have been back to normal at 3 -6 months.......and my eye would be perfectly fine after 6 months.....hmmm.. Really wish that I'd bought that punch bag!

Well, I had a lovely telephone conversation this morning with Elva, who runs the Cerebral Aneurysm Support Group at Queens Medical Centre in Nottingham (think that we were chatting for nearly 2 hours).......she's a lovely lady and very devoted to the cause of SAH support ..... Elva had a SAH 10 years ago, so she's passionate in what she does and like myself, knows that we all deserve better aftercare (which we shouldn't have to chase when we're at desperation point!) and need better general information to aid our recovery and help to take us forward.

We also used the word "normal" a lot and we have both found, that if survivors realise and are told that what they are experiencing post SAH is actually "normal" for a SAH survivor, then that fact helps a great deal with recovery. I shall be forever indebted to the many people that helped save my life and cared for me ... I shall always be truly thankful to all of those that played a part in my early weeks.... However, I don't feel that it's wrong to express my concern, that when we're released from hospital and surgically "fixed" that we're left in limbo and many of the questions and concerns that we need to ask during recovery or something that will aid us practically, in our day to day life remain unanswered. When we leave hospital, most of us are grateful to have survived ..... probably, against the odds.... but for many of us, when we get home, the "journey of surviving" has only just begun......

I've recently had a bit of a battle with a medical professional on Wikipedia that deleted our external web link to BTG, we inserted our web link when I first started this website ......he didn't feel that recovery or a website link like this one (which he considered to be only a forum) was worthy of being mentioned on Wiki. To say the least, I was pretty mad, as we have had a lot of visitors from Wikipedia and all I can say, is that he's denying many people of finding some support/recovery info post SAH. Let's face it, it's up to any individual whether or not they click on that link or join the website ..... we're all grown up's.

Unfortunately, the stress of challenging him, didn't do my own health any good......I was hopping! .....so, I had to take a break ..... but, it sometimes seems that the medical professionals are only interested in "text" book reading and quoting stats ......thankfully, they haven't been through this and a SAH isn't something that you would wish on anybody ...... I just wish, that people could display a little empathy and realise that not everybody "gets back to normal" ...... but, then again, I suppose that it's only a job for many of them and it pays the mortgage etc.... If you challenge them, then they don't like it ....... so, that's why websites like this one exist......

[Janet]

Hi Karen

So glad that the head pain has eased off and hope the eye starts to behave soon.

As you know I agree wholeheartedly with you about the aftercare and different levels of support available in different areas of the country.

I go for my C.T scan on Friday but am still waiting to hear from Walton with an appointment for Mr Eldridge.

When I do finally see the Consultant I will be raising the issue of follow up support for our particular area and also hopefully get them to include the website address on the advisory sheet given to patients recovering from SAH.

Not that it done me much good as I didn't get mine til my follow up appointment.

So sorry you had no joy with WIKI apart from bashing your head against the proverbial brick wall as you say it will be a loss to so many fellow sufferers.

Janet x

[Karen]

Hi Janet,

and thanks for your kind words...... Good luck with the CT scan on Friday....

Yep, I tend to get pretty annoyed with some of the stuff that I read and to be honest, we all deserve a lot better then we get ..... and we definetly shouldn't be struggling before we can access services....certain things should be offered as the norm ...... anyway, enough of my rambling and wishing you the very best.......xx

[Nita]

Hello there,

I can't believe how people are treated after SAH! If I hadn't had a computer so I could research my condition and find out about other people who have gone through this, I don't think I would have made it this far! I am almost 22 months post SAH (not that I'm counting, lol) and still struggling so much. No one understands unless they have been there and as we don't have bandages wrapped round our heads, people just assume we are back to normal... how we used to be! Even my doctor hasn't asked just once how I am or how I'm coping! If doctors can't get their head around this, then how can we expect anybody else. This sight is the best thing that's happened to me since my SAH. You don't feel so alone when you know that other people are walking the same road as you.

A great big thank you for being here.

Love Nita x

[tennissmithy]

Karen,

All I can say is thanks for this website. I had to battle with my doctor in the beginning to get him to admit I had had major surgery! When I did get him to admit it he said he was trying to make me feel better! This obviously didn't help as I wanted to know why I had so many side effects. The aftercare I have recieved since my SAH has not been brill and places like this site need shouting from the rooftops and advertising everywhere so that SAH sufferers can see what is happening to others as well.

Take care and thanks again

Laura

xx

[rince]

Seems to me that the majority of medical health care "professionals" have their heads if not firmly in the sand then in need of surgery to remove it from another part of their anatomy! From reading the posts on here the support that people get from Karen's hard work is immense and for someone who should know better to try and belittle that is not only wrong but stupid.

Scott

[Karen]

Thanks guys for your support ....... Sometimes, I have to take quite a few deep breaths when I'm trying to put over the point of support during SAH recovery ..... I can still find myself getting hopping mad with the medics that seem to dismiss the fact that "realistic" recovery advice post SAH should be available for the SAH'ers that need it.

That doesn't mean to say that all SAH'ers will need it, as they may have well made a miraculous recovery, but it should be available to those that require it. We should have the choice to use it or not to use it, depending on our own individual circumstances and recovery....it doesn't mean to say that we want to paint a "doom and gloom" picture and that seems to be the response of the medical profession .... that if we're given the hard facts, then we won't recover in a positive way.....but what tosh... it's when you're told that you should be fully recovered and back to work by 3 - 6 months and you don't go on to achieve it, is when you feel like a failure and the depression can set in.... When our partners are told the same time frame by the medics, it's not always easy for the SAH'er to convey to them, that they're not fit enough to return to work and still feel poorly after this period of time..... I don't think that I've ever met one SAH'er that has been completely negative with their outlook, mainly, they have a positive attitude when they're given the right support and information.

[rince]

The advice I was given was that although many people make a full recovery it could take up to three years. I was also told that there are no guarantees when it comes to ABI (acquired brain injury) and that there was as many different outcomes as there are patients. Exactly what you find on here. To try and with hold that from people is totally arrogant, we know but you can't know... utter tosh. Not everyone is as lucky as I was in that I received top notch care and after care this website is a MUST have as far as I am concerned. There is a lot out there on the web that will scare people in terms of SAH but this site is unique in that it's content is 90% survivor generated.

One of the problems as I was told almost five years ago was that coiling was a fairly recent medical advance so there was no real hard facts about living with it. The long term is now with us and WE are the people best able to tell that story.

Scott

[jess]

Karen glad your pain is better today and janet good luck on friday with your scan. Jess.xxx

[Cal]

Karen,

Hope you are feeling better. You have been down so much lately between the flu and now headaches.

I totally agree with all you say regarding post SAH. We also experienced the unknown after and with little help or no help from the Doctors had to find out on our own what to expect and what is "normal".

I totally can understand the frustration with Wikipedia. I just want to let you know that I did not go to that website to find you so with time and energy your site will be found. I do not wish a SAH on anyone but if someone from this site suffered one or had a loved one that did, maybe that would change their opinions.

You and everyone else on this site are so caring and helpful to so many that have suffered a SAH.

Please let us know if there is anyone we can contact to bring the site back to Wikipedia. I love your site and thank God everyday I found all of you.

Stay well

Cal

XXXX

[jess]

Karen I did not go to that web site either to find this group I cannot remember how i found it now but i have always chose to ignore that site. Jess.xxx

[Shanti]

Hi Karen

I didn't find this site through Wikipedia either. Have just checked and as I thought: I googled subarachnoid haemorrhage help groups and the first entry is behindthegray. I know I had been looking at Salford Royal Hospital's website too, but just checked through now and there is no mention of this site under helpful links. Shall I ask them when I go in May to put a link in to you?

Hope you feel better this morning.

Just for the record, and I've said this enumerable times on here, without this site I honestly don't think I would have recovered as quickly as I have. Also the most important thing for me has been that there are others on here who not only have survived but continue to survive, all with a lovely sense of humour.

When I first came out of hospital I was terrified of sneezing in case I popped my clogs! And gradually I have learnt to take one day as it comes and just try and get on with things. If I've had the odd symptom, I've checked on here first before even thinking of googling it. Also the first thing I do every morning is come on here to check out how everyone is and usually have a chuckle which is a good start to the day.

If there is anyone I can contact for you to help with this just let me know.

Janet: hope the scan goes well tomorrow.

Love 'n hugs to everyone

Lesley xxx

[Karen]

Hi,

Not many other complimentary websites will put a link in to behindthegray, as we're not a registered charity and that also applies to NHS websites...... Salford/Southampton did put in an external link for us at first, but when they updated their website, they had to delete us, because of the non-charity status. I could have and still could apply for charitable status, but it would involve even more work for me and at this point, I would still rather put my time and sometimes, limited energy into helping a SAH'er, rather than book keeping and dealing with admin.

I think that the only other brain injury website that initially agreed to link with BTG, was Brainhelp (run by the lovely Walter) and his website link has also been deleted from the SAH page on Wiki ...... Oh, just forgotten, we also have an external link on the Val Hennessy Trust website, which is run by Gerry Millsopp.

As far as re-instating the external link to BTG on Wiki .... I can do that myself, but you can bet your bottom dollar that as fast as I re-instate it, it will be deleted by the same person who feels that recovery info is less important than stats and medical accuracy. I did the "battle of wills" a few weeks ago! I need to go onto the talk pages and state my case, but at the minute, I don't feel up to it, as I just get too stressed!

One of the problems as I was told almost five years ago was that coiling was a fairly recent medical advance so there was no real hard facts about living with it. The long term is now with us and WE are the people best able to tell that story.

Scott, that's very true ......

[bogbrush]

Sorry to hear you've had a rough time, Karen. Hope you are feeling better.

The aftercare and support in a lot of areas is pretty thin, and that not only applies to SAH. My Dad suffers from heart disease and Alzheimer's and my Mum has to look after him virtually 24/7 and it's been a real fight for her to get any sort of care for him so she can take a break which she desperately needs. At 73, it's not easy for her to cope with and many times she's been on the phone in tears

Yes, it's a shame that more sites don't or won't link to BTG. The Val Hennessy link to BTG is broken BTW and I've contacted them about it. I've received a reply saying that the site is being updated and the link will be fixed soon. I know I don't get that many visitors on my own site, but I've made the BTG link a bit more prominent.

Long live BTG!

Keith

[Karen]

Thanks Keith.......I really feel for your Mum and it seems to be the case that if you're seen to be coping, then you're basically left to get on with it ..... I can remember watching a tv programme, where a Mum of a mentally and physically handicapped child was actually about to drop her child off and leave him outside social services, because she couldn't get any help. She felt that it was the only way she would get anything, as the normal requests hadn't got her anywhere ..... the poor lady was at desperation point and her marriage had already collapsed.

Just wish that I had that magic wand.......

[Sasbo]

Hi Karen and everyone

Totally agree with everything that you've all said. My GP is very understanding as well as being totally sympathetic with what I've been through.

However my surgeon, to whom I will be forever indebted for saving my life, forever grateful and wondering how I can ever repay him, is not quite so good at aftercare as he is at brain surgery. My first appointment post clipping #2 was just a couple of weeks ago. He basically said that I, like others who have been lucky enough to get through such a life threatening condition, need to put it behind me now and move on as best as possible. I had written a list of questions and symptoms/conditions that I've been experiencing post-SAH. Didn't really get any answers and didn't have the wit or energy to push him. I went in on my own as others can be either, with the best will in the world, over-protective or a bit "does she take sugar" and I needed to try and find things out for myself. Didn't really work! So, I'm still feeling confused and unsure of everything and need to come to terms with it all.

Karen, this site really, really helps. We're not alone in what we're going through and we're not going mad, over sensitive or pathetic but are experiencing very real difficulties post-SAH and post-surgery that need addressing and understanding to help us move forward. It does seem that we'll have to do that ourselves with support from us all on this site so we're not alone at all.

Love and hugs

Sarah x

[Guest ellen]

Karen,

When you wrote: "However, I don't feel that it's wrong to express my concern, that when we're released from hospital and surgically "fixed" that we're left in limbo and many of the questions and concerns that we need to ask during recovery or something that will aid us practically, in our day to day life remain unanswered. When we leave hospital, most of us are grateful to have survived ..... probably, against the odds.... but for many of us, when we get home, the "journey of surviving" has only just begun...... " It really resonated with me. Friday my husband and I went to the neurologist. I had an MRI Wednesday and was very interested to find out how it came out. He didn't know about it so he rummaged around in the back and found it then came back with his assesment. No more bleeding all is well... Here is the thing, my symptoms have gotten worse and I am not getting better. A month ago I could do more than I can now. I went back to work too soon because no one told me any different. When I was released from the hospital I was not given instructions. I asked the doctor when I could get back on my bike and he said whenvever I feel like it. I can't even walk around the block anymore and its been 4 1/2 months. He never mentioned to be careful with coffee, alcohol. No literature or information was given or even websites offered... I was left completely alone until I stumbled on this website just recently (thank God) and finally got some answers and support. Friday I left his office a complete basket case (tears, yuck) due to his complete lack of care or consideration to my concerns. What is going on here?? I am an easy going person and I don't get riled easy but I am disgusted with this. I went to the ER 3 times in December with misdiagnosis and told "its only a migrane" only to have suffered horrible vasospasms that nearly killed me and could have put me in a nursing home. Finally they found the bleed in in the right temporal parietal lobe and the medium occipital lobe. Sorry this is so negative. I just feel that I and everyone out there deserve a little more respect, consideration, and education. I would never sue or retaliate but I have to say this site is the best thing I have found since beginning this journey Lots of love to all of you and please keep posting. Hope you are feeling better.

[Karen]

Hi Ellen,

It seems that there is a lack of understanding and knowledge about SAH recovery. I think that most of us initially leave hospital feeling quite euphoric about surviving, but annoyed or angry at the misdiagnosis that many of us had before we were treated, but hoping or expecting that things will all go back to normal. I feel that lack of recovery info, during the initial months, doesn't help any and we need to know that getting the odd twinge or bad head, doesn't mean to say that it's happening all over again. A bit of reassurance would be wonderful, as it is frightening time and I suppose that the whole experience has left us feeling extremely vulnerable as a human being .... I still feel vulnerable and I don't think that I'll ever get back to feeling how I did pre-SAH, but I don't feel frightened quite so much now, more frustrated than anything. It takes a lot of time to get to used to things and I'm nearly at the 3 year point and still having problems.

Ellen, I was told that 3 - 6 months was the earliest that I could expect to return to work ..... I haven't managed to return to work at all.... but, I'm still experiencing recovery....my recovery has been slow, right the way through.

Try not to get too stressed, as it won't help your recovery ..... again, I think that it's quite normal to feel slightly angry when you feel as though your recovery isn't happening as quickly as you expected it to. Good luck, it does get better......

[Tina]

Hi Karen

I think you are amazing, If it was not for your selfless dedication and all the support you and everyone has given me,I would be alot worse off and worried about every ache and pain. The information I got and support when home was nil, if it was not for my husband and best friend I dont know what I would have done in the early stages . This website is has been a life line to me, so thank you from the bottom of my heart to you Karen and everyone who responded and supported me. THANK YOU . I have not been well, suffering the same as you Karen my eye pain is just awful at the moment and my headaches worse I think because of my eyes. My Dr says take paracetamol and ibprofen as required and see how I go , but does not touch it. Dr says it is nerve pain .Cant sleep at night driving me mad. I am going back to see him Monday. I can relate to your pain.

Hope everyone else is ok, hope to be back chatting in green room soon, just hurts mys eyes and head so much to use computer.

Lots of love

Tina xx

[Karen]

Hi Tina and sorry to hear that you're still experiencing quite a lot of pain.

That was another thing, when I was released from hospital, not one person told me that a III nerve palsy would be painful.... it was something else that I had to find out via the internet......it's ridiculous really, as again it made me worry that another SAH was about to kick off.

My eye pain almost feels like being stabbed in the eye and punched....it still comes and goes and I'm experiencing another bout of it at the minute. It seems to be worse when I'm experiencing dizzy spells, so it makes me wonder if the two things are somehow related. It does tend to make me feel very tired too and in the evening, I can struggle watching the tv ..... If it gets particularly painful, then I patch it off, it helps take the strain off it. Do you patch your eye over at all?

If you don't feel that the normal painkillers are doing much, then go back to your Doc and find out what else he can give you ..... sometimes you have to be insistent and don't feel like you're being a pain.......as it's you that has to put up with it.

I sometimes put in eye drops (just normal ones, that you can buy over the counter) and that helps to lubricate the eye and cool it down. I was prescribed eye drops and lubricating ointment for the first 6 - 8 months after the SAH. If your eyes feel dry, then it might be worth thinking about. Mine are always dry when I wake up in the morning ..... it almost feels as though they've been open all night.

Well, I hope that you get some respite from the pain soon...

[Tina]

Hi Karen

No one told me either how painful nerve damage is. I had nerve damage to all

down side of face. Now it is just the ones connected to my eye. Have been using the drops, but dont seem to make any difference. My eye now wont close fully from not openeing at all!

I was mis diagnosed by my Dr as having a sick bug. If it was not for my friend rushing me to hospital who knows what would have happened.

It is only 4 and a half months since my difficult seven hour operation, so I know it is still early days. Dr told me not to patch up my eye as the brain needs to re callibrate eyes together, yet my eye specialist says my nerves have to re grow and re attach so who knows!!

I am sorry you are still suffering so long after it all happened. I send you a big hug

My balance is still dreadful, not sure if it is the double vision and blurriness or because they cut down through my ear. Had a lot of pain there, but has improved.

Time and rest is the healer i know, but we still have to get back to normal life.

My head is banging from trying to concentrate and type this, but determind to do it.

Take care and hope you will feel better very soon.

Lots of love

Tina

[Karen]

Hi Tina,

All I can say is, you need to do what's good for you and after a while, you do find out what works etc and I can only talk from personal experience.....as I've had "b" all else to go by! ..... if your eye isn't fully closing then I would have thought that your eyes would be dry and your Doc would have recommended a lubricant for your eyes? I wasn't "blinking" enough and I was given a lubricant to put into the eye.

I was told not to keep the eye patched off continually or to alternate eyes with the patch ... but if it hurts, then I'm afraid that being the maverick that I am, then I would patch it off and still do.... the eye muscles can become lazy if they're constantly patched off, but I wouldn't have thought that patching for a couple of hours or so, would make a huge amount of difference and I've always weighed up the pain factor against the medics point of view .... which I've had little of....

I was coiled, but I have a feeling it depends more on what artery was affected by the bleed, more than the surgery itself. Dizziness/balance issues have plagued me since the SAH and it was my post right communicating artery that was affected. When the dizziness is bad, then it affects my walking too.

Well, I wish you luck xx

[Louise]

Hiya

I actually answered this but goodness knows where its gone so hope its not babble but.

When I left the hospital I didnt have a computer or had I, I would'nt have been able to use one had I had one I felt very much out on a limb in the big bad scarry world It was a good 2 years before I fully realised just what had happened & what an inpact it had been.

The hospital left a bug in my brain which in turn gave me menigitis, which is where the fatuge domonates now.

Tina, I had eye pain not as bad as you seem to have though, my optic neirve was very badly damaged.

Ellen I dont think there's anything firm to go by on the speed of recovery or getting back to work, everyone has their own take on recovery, and every SAH is itself different.

But I do think that although doctors can literly perform miricals their communication skills about it all leave little to be desired, they seem to have hit on this 3-6 month thing which is ok for some but mostly to me that's rubbish....

When I colapsed the doctor that came thought I had 'an inner ear thing going on' thankfully Ronnie & my cousin persuaded him differntly.....

I do know that in some cases it is very hard to work out whats going on, because some symptoms are very like flu, viral infections which is why so many get misdiagnosed, as I said the doctor though ear, it was the ambulance man that thought nuro & got me to the right hospital even though it wasnt their day for A&E -999 intakes he know thankfully....

Ronnie's cousin went to hospital & was told she had a bad viral infection was given an injection & sent home, her Dad used to be a paramedic in London, so he took her right back to hospital again, when they went to give her a CT scan they found the scanner was broken, then they couldnt find a scanner which I found really hard to swollow what happened.

So I understand from both sides of the coin.....

Keith, its terrible that you have to fight like that in the 21centuary....

Hugs, Louise.xxx

[Tina]

Hi Karen

Thanks for advice, I will do as you advise and alternate eye patch , because now my good eye is nearly as painful as bad one!! Will keep using eye drops , Like you I am not blinking properly and wont shut properly.

Had really bad afternoon eve yesterday, took 2 piriton last night as well as pain killers, I actually got a bit of sleep. Dont think will hurt to do occasionally when bad. Well it helped!! Till the pain woke me up again. More pain killers!! Never liked taking them but have to at moment.

Thanks Karen, hope you are feeling better. Onwards upwards things can only get better

Louise, things must have been just awful for you,dealing with everything and menigitis, I went to Dr and he said I am trying to do too much, causing more problems. So resting up but find really hard and frustrating. Tiredness causes more eye pain so thats what it must be .

How you managed all that time without the support of this wonderful web site I dont know. You are obviously very stronge and a fighter.

Ellen, I hope you feel better really soon, it is scarey when you come out of hospital, because many of us do not get told anything, I have found this site very helpful, there is always someone that can help or give advice from personnal experience. Gives an insight to what is or can happen and help us to cope better.

Take care everyone

Love Tinaxx

[Louise]

Tina, yes that was me too I tried to do too much (run before I could walk) literally yes it is hard & frustrating but one day you’ll realise Wow its not as bad honestly.

I gained great determination from this I have to say & yes I am a fighter I fought for my life, & to get it back to how I am today ok there are things I cant do but I’m here and that the thing…..

Take care

Louise.xx