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What happened, why do I feel so bad?


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Hi,

I am new to this site and forum and this is my first post. I suffered a SAH on 21/10/11 as a result of a car accident. They tell me it was only a small SAH and was discharged from hospital 5 weeks later.

I had been recovering so well and was feeling almost back to my old self in February, but early March, something just changed and I've felt so bad since. I literally went to bed one night and the next day I got up I had a headache and felt so woozy. It has got worse since and I'm now also having trouble with my ears (feels like pressure in them all the time and hearing goes funny). Back of head feels so tight and heavy and I'm having difficulty with swallowing and talking just seems to pull on my head and neck and is such a struggle.

I went back to a&e as I felt so bad and they did another ct scan, but said it was all fine. I've also seen my consultant who just put it down to stress, but I was ok before all this started. I'm now so desperate as is it possible to feel this bad after 5 months and having got back to pretty much normality (apart from going to work).

Has anyone experienced similar symptoms or such a massive dip in recovery after all seemed to be going so well?

I hope someone can reassure me as I don't know where to turn next.

Alikins

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Hi Alikins,

It's not unusual for many of us here to experience peaks and troughs with recovery...it can be 1 step forward and then 2 steps back sometimes. I still get the pressure in my ears on occasions (I'm 7 years on) and what I call a change of frequency in them. Often this seems to occur when I've overdone things. I can go through a period of a few months with nothing and then it comes back. Nobody seems to be able to tell me why. However, I still have a neck left on my aneurysm, which caused the bleed and I'm still being monitored.

However in your case as the bleed was caused by a car accident and because you've felt very much worse literally overnight, I would recommend that you go and see your GP again and discuss everything that you've told us on here about your symptoms as perhaps there are some other tests that they might be able to do. Never be worried about going back or feeling like a nuisance.

Sorry not to be of more help, but wishing you well...xx

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I feel like my ears are always dirty...I also get a shhhing noise in ears..... like holding.a shell up to ear..but worse......so I turn up TV My Family say "you deaf" so I just say "WHAT"..!!! lol

As Karen said you will have to see Doc again......Smile and sing ... Be happy and I hope you feel better soon...We all have good n bad days it is part of SAH recovery... I guess ???

One woman on here said she had SAH 19 years ago (it gave me hope)....so keep happy no matter what and relax !!

Like Karen mine was not due to accident....

Good luck on your recovery

Regards

WinB143

Edited by Winb143
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Hi Alikins. About 6 months after my SAH I feel very unwell, it seemed to come on quickly. It felt similar to when I had my bleed but not as bad. I went to A & E and they immediately admitted me. They did a CT scan which showed no bleed but something wasn't right, I was transferred to the Southern General in Glasgow, the hospital that treated my SAH. I was kept in for 4 or 5 days (sorry memory of this is not too good) and they observed me, on the 4 th day they did a lumber puncture. I had hydrocephalus but it was not too bad and they didn't want to treat it. The type of SAH I had was a 'spontaneous dissection' a rare subtype, and my bleed was extensive.

The feelings you describe did settle down but it took a while, and like you I was recovering very well in the first few months. I think the symptoms you describe should be investigated further and like Karen says never be worried about being a nuisance. Did you have coiling?

Hi Momo,

Did the ct show that something wasn't right? I did read about hydrocephalus, but as I had a ct scan I thought it would have shown on that and I don't seem to have any of the other symptoms that they say occur with hydrocephalus i.e. vomiting.

I didn't have any surgery as they decided it wasn't sevre enough to warrant any surgery and managed to manage it conservatively.

Thanks for your response, I hope you are doing well now.

Alikins

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  • 3 weeks later...

I think reading all of these threads makes you realise you are not alone and that a SAH can have many different effects on the body although there are several common and recurring themes. I had my SAH in Sept 2010 and fatigue is still my biggest problem. As in other replies, I think you have to ignore feelings of guilt or embarrassment at going back to your doctor - after all, this is your life they are playing with and it is not to trifled with. You know your own body best! What I would suggest, as others have, is to keep a diary of how you feel from day to day - hour to hour if necessary including the following:

1) How you feel now both mentally and physically [record sleep, depression, therapies, work pressures etc]

2) How it is affecting you now

3) How you felt before your bleed

4) What is different from then to now [ie measure the impact on your life, treatments,drugs required, support from family members friends etc]

5) Anything else you think might be relevant

In this way you can quantify what is wrong/different - show it to your doctor - it is easier than trying to expain it or remember specifics in a 10 minute doctors appointment.

Before you can successfully treat your problem you have to fully understand what it is, from what you say I don't think you do yet, at least not to your own satisfaction. You sound like such a giving person with a conscience, it's time for others, inparticular the medics, to give something back to you for a change. Get back there and demand more answers and don't let them fob you off - you are not a nuisance, you are a precious life with so much more to give, so do it to help those around you and most of all, for yourself. If you upset someone, then so be it, you can always apologise afterwards - get yourself better first - PLEASE!!

I really hope this helps you and you find the answers you are looking for. And the members on this forum are always here to help and support you.

Good luck

Macca

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Well Alikins,

Today is not a good one for me. I wouldn't normally post when I feel like this, but your message rankled with me somehow. Just so you know you are not on your ownand that life goes on no matter what, today I've been hit by a wave of depression and the submarine that is my brain is already sinking from the light into the ascending gloom. It's cold and dark and wet, unrelenting and crushing..............................................the submarine, looking sleek on the outside is a mess of despair on the inside and no-one can see it but me. I need to blow the tanks and re-surface but it may take hours for this to happen. In the meantime I must tell myself it will all be alright........and it will be because tomorrow will be another day and my mood will be different. Right now though, it is hard to visualise and I have to go to work. I hope talking and working will lift me, I have to hope that it will. Right now I am on the seabed, waiting for the engineer to work out a way to get off the bottom. It is the best analogy I can think of.

Enjoy your day whatever you do, I will be alright. I'll post later to let you know how I feel then.

Macca

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Your symptoms remind me of how I used to feel. I was scared that every little change was somehow going to lead to death. That being said, I called my doctor on the phone a couple of times and it really, really helped me. Sometimes a scan just can't tell everything, but if you feel bad, you should call and make sure...it's your brain we're talking about here not just a hang nail that's bothering you. The swallowing thing still gets me sometimes as I've literally wader-boarded myself and totally understand that it is indeed torture.

Hang in there...just today...then tomorrow...then the next,

~Kris

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Thanks WinB143,

how about "I get knocked down but I get up again?" I'm home from work again and my submarine is off the bottom but not at the surface yet. Working actually made me feel better about myself but it's a double edged sword because it has exhausted me and I need to sleep. What would I do without you people on this site? The level of understanding is such a comfort and is higher than even friends and family because you have also lived my experience and really do understand how it feels.

Thank you so much.

I'm sure I'll be better again in the morning. Hope everyone else is feeling ok too by then!

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Hi i also am suffering after being okay for the first couple of weeks after discharge.I was fixed(stent coil and blood flow divertor on 2 annies one suspected of bleeding at the end of january and one smaller fitted with blood flow divertor as a precaution.I was in Southern General Glasgow and was discharged 10th march 2012.I felt pretty normal as i had been lucky and suffered no ill effects from the original bleed in january bar one nights headache and slurred speech.Fast forward a couple of weeks and i have been at my gp every day for a fortnight.

I thought to begin with i had sinus infection as my ears were feeling very full and had awful taste and yellowish gunge at back of my throat.I was prescribed ammoxicillin for a week and given some sleeping tablets as i had got myself into a panic that it would go to my brain and worse.After that it was my heart rate and then i thought i was bleeding internally due to the blood anti-clotting drugs and cried like a baby every time i tried to speak to the g.p who decided to check me out and put me forward for councilling and mentioned ptsd.

After prescribing me some diazepam 2mg she told me to go home and take 2 tonite and it was the first time i felt normal (ME) fora while.I know these arent a long term fix and am worried about what happens when they are finished.I am probably best described as an emotional wreck i think my family must be sick listening to me going on about what i thinks wrong with me today as i am sick listening to my own voice,i cant be normal anymore,i cant sleep without medication and cant function during the day without it either.I can get up get dressed and do housework i,e dishes hoovering washing etc but all the time my brain is trying to piece things together and look for reasons for this symptom and another.Am now on second course of antibiotics but different ones but after reading these posts am beginning to wonder if its all anxiety or stress,this sounds better than the inner ear infection i had now convinced myself i had.I have it in more in my left ear and tingling sensation on top of head at same side and gland throbs at this side some times.But as my wife says over and over if i had an infection you would have had a temperature increase or worse symptoms by now lol.

So its back to the anxiety and stress and ptsd then.I crave my old normal happy go lucky self as i know my family are starting to miss him too .And hope my g.p keeps the drugs coming or god knows what happens then

Thanks for listening again x x take care Tom

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Thank you so much for that list Macca. I used it last night to organize my feelings and frustrations and it ended up being four pages. LOL. I finished it up with what I need moving forward, and what I think is helping. I'm seeing a new neurologist today. Going on day nine now of a headache, spidey head.

Not going to complain, just going to hope for resolution.

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I can feel for you Tom...if in doubt see your Doc....tell him you need to talk....and pour out your feelings....if you want to cry then cry also if you want to laugh go ahead it is so good for you....letting out feelings is good....do not get stressed and try and remain calm.....for your sake ....Tom sing and find things that make you happy ...after all we are Alive !!!! so yeahhh we made it this far xx

Try and be happy Tom..easier said than done but ...Always look on the bright side of life ...look another song there lol

Be Happy Tom

Good luck on recovery

WinB143 x

Edited by Winb143
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Hi Macca....

Get ready...sub turning over .....chug whirl....sub starts to go higher...Daylight yeahhhhhhhhhhh .....song time....... deep breath.

..

One of 2 choices

Yellow submarine.or this one ~~~ I said your love is lifting me higher..Than I've ever been lifted before

Walks away singing No.2

Be Well Macca

Regards

WinB143 x

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Tom,

don't try to control what you can't control, but you are right, people stop listening when you keep telling them what's wrong, not that they want to, they just feel they've heard it before, that's natural, not your fault so don't blame yourself. Don't blame them either because they don't know any better. They can't feel what you have experienced. Do you remember the days before the internet when you bought a medical book and when you went through it you thought you had everything in it? That's what you seem to be saying today. I know you believe what you say and I do too, because I've lived through something similar. If I were you I'd try to tell them what you can do today, not what you can't, save that for your worst days. It will help you stay positive as well. I read a statement somewhere 'even the longest journeys start with a single step'. You are doing great considering what you've been through - don't beat yourself up about it as well. You are on the road to recovery but you might have to do the 'A' roads rather than the motorway, but you'll get there just the same. You just don't believe it yourself yet because it seems so far away as you are still near the beginning of the journey. You keep going, we're all with you!!

Good luck Tom, I'll keep watching out for you on here!

Macca

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Thanks to all you guys,i am really trying to not be anxious as i dont want to need drugs as before all this i didnt even like the idea of taking a paracetamol lol.I like finding things out from this website that make me realise that its okay to cry and okay to have full feeling in my ears now and then and stuff like this.This is what helps others recover i believe.

I got word that i have to go back into The Southern General next thursday and get an angiogram on friday and hopefully get discharged on friday night(well thats what the lady on the phone said) so i am a bit more anxious than normal as its only going to be just over 7weeks since my operation.Also a bit wary of going back to same ward and all that .

Its also a fair bit from where we live so not looking forward to it although i know it has to be done.I have tried very hard not to just use the diazepam willy nilly as i know people get addicted to them and also that there is a good chance my g.p might stop them.He has already told me as good as that because of the plavix(clopidigrel)he cant prescribe me any anti-depressants until i am off them and the neuros have stated i have to stay on these for 3months and then the asprin for life.I admit that i am only using the diazepam as a sleep aid mainly as i went through about a week of no sleep and was about sectioned by my family lol and couldnt go through that again.At least if i get a normal sleep i stand a better chance of coping through the day.I must admit i envy some of the posts on here about sleeping as since i went into hospital i was very unable to sleep.My first night after my first failed coiling operation was spent in the hdu unit wide awake staring at the ceiling.

It hasnt improved much since then and i dont even get tired during the day anymore and i did prior to Sah.

I also got an appointment in from a mental health referral by my g.p which is in end of May so dont really understand what to expect from this.I have saw some people post about Headway and have one of these near me but dont know what it could offer me,i was thinking of calling it to enquire.

I just want to stop my brain going into overdrive and to be able to relax and think about something normal and not dwell on what could ave been or might never be if that makes any sense.

Thanks Tom x x

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Macca, it's good to hear you feel a bit better today. Sometimes allowing yourself to feel as you do is the best medicine, always remembering that the feeling will pass & the next day can be so much better!

Tom, sorry to hear that you are having such a hard time right now. I can only agree with Maccas' reply to you. Things are going to get better. I think most of us on here have gone through the times early on when every symptom scares you senseless, this really will get better in time & with help & support. Take care.

Michelle x

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Hi Tom, I posted before I saw your update.

Good luck on Friday, I am sure it will put your mind at rest when you get the results of the angio. It is daunting to go back to the ward for sure. If there is a Headway near you, it'd be well worth phoning them. Your GP would surely help with a referral if necessary? There isn't a Headway close to me, Inverness 30 miles away (not so far if you can drive.....), Aberdeen 80 miles away....otherwise I would definitely have been in touch with them long ago.

Hope to hear from you soon as to how you have got on.

Michelle x

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Hi Tom

Good luck for your angio next week. I can totally understand your anxiety about going back to the same hospital as I was also a nervous wreck when I went in for a follow-up appointment a few months post-SAH and I cried for pretty much the whole day... it was emotionally draining. I also felt extremely nervous when I went for an angio 1 year after my SAH and coiling. The angio was much easier to cope with than I expected, and I was discharged early evening that day. I did write a thread about my angio check up, if you wanted to have a read of it.

I can relate to the worry about getting addicted to tablets, as I felt that about the Tramadol I was given upon discharge from hospital after my coiling. I was very careful about how many I took, and kept a notebook of all medication I was taking (simply because I would forget immediately after I had taken it!).

Also, during the early weeks/months post SAH I struggled to sleep well, partly because of having to take medication every 4 hrs during the first few weeks but also because I was overthinking everything and worrying about it all happening again. Consistent sleep was difficult, but that has got better over time, and I can sleep really well now!

I haven’t used Headway myself, but others on here have done so and have found it really helpful and worthwhile. It is well worth giving them a call to discuss what they might be able to offer you. It is always worth finding out. If you don’t ask you don’t get.

Good luck with the mental health referral too. I found counselling really helped to validate why I was feeling the way I did back then, which helped me to start to accept it all.

Kel x

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Tom, I have just had another thought that may be worth you looking into.....I have had a lot of help from Momentum/Transitions. I'm not sure if this is a Scotland only thing? Maybe you could google either of them. They show a map of your nearest office if you put in your postcode. There are also contact numbers & addresses on the website.

Michelle x

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Tom, I have just had another thought that may be worth you looking into.....I have had a lot of help from Momentum/Transitions. I'm not sure if this is a Scotland only thing? Maybe you could google either of them. They show a map of your nearest office if you put in your postcode. There are also contact numbers & addresses on the website.

Michelle x

Thanks Michelle i will look into this thank you Tom

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Hi Tom

Good luck for your angio next week. I can totally understand your anxiety about going back to the same hospital as I was also a nervous wreck when I went in for a follow-up appointment a few months post-SAH and I cried for pretty much the whole day... it was emotionally draining. I also felt extremely nervous when I went for an angio 1 year after my SAH and coiling. The angio was much easier to cope with than I expected, and I was discharged early evening that day. I did write a thread about my angio check up, if you wanted to have a read of it.

I can relate to the worry about getting addicted to tablets, as I felt that about the Tramadol I was given upon discharge from hospital after my coiling. I was very careful about how many I took, and kept a notebook of all medication I was taking (simply because I would forget immediately after I had taken it!).

Also, during the early weeks/months post SAH I struggled to sleep well, partly because of having to take medication every 4 hrs during the first few weeks but also because I was overthinking everything and worrying about it all happening again. Consistent sleep was difficult, but that has got better over time, and I can sleep really well now!

I haven’t used Headway myself, but others on here have done so and have found it really helpful and worthwhile. It is well worth giving them a call to discuss what they might be able to offer you. It is always worth finding out. If you don’t ask you don’t get.

Good luck with the mental health referral too. I found counselling really helped to validate why I was feeling the way I did back then, which helped me to start to accept it all.

Kel x

Thanks Kelbel you dont know how much this info means to me right now.Had an appointment with my g.p today who is treating me for my bowels not moving great and piles also now lol the joys eh.He wants me to ask the specialist when im back in hospital next week if there is an anti-depressant i can be given along with the clopidegrel(plavix) as he isnt aware of any that doesnt heighten the risks of taking them along with my other meds.So meantime i have to take the diazepam as and when needed.I tried to explain that i just need a break from my brain lol as it wont stop reading terrible things into every situation all day long (and night).I dont like watching t.v ie the news anymore as it reminds me of the depressing things around us aswell as newspapers i used to make it my mission every morning to get a newspaper but cant or dont want to absorb the bad things inside.

My family are the world too me and its hurting to see what its doing to my wife as i know she just wants me to be me and not this scared shell i am slowly becoming.

I keep wishing there was a magic wand i could wave and make the worry and fear go away and let me recover if you know what i mean.I feel as if i have enough to deal with in recovering without the added worry of other things like sinus infections and earache and gland tremors and piles and bleeding etc etc .

Everyone keeps saying you made it your lucky you will be fine and i reply if all these other silly things disappear and let me recover then i will be okay but i dont know anymore what is real things wrong with me or anxiety/stress playing with my mind.

Right now i just want to feel normal like me and function normally as me and not worry myself to death.Sorry if this seems depressing to anyone its just my thinking out loud .I have been told that the Neurophsycologist will come and have a word with me when i am back in next week for my angiogram so hope this helps a bit.

Thanks for all advice and for letting me rant everyone.

Thanks Tom x x

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Tom,

Rant all you want if it helps you ....and stop sitting on my Dock of the Bay lol ... j/k

Be Well and remember all of us have been through similar things in life.. So Come on, together we can beat anything life throws at us..Good Days and Bad days.....and we have got the memories when our brain lets us remember...So Cheer Up and ....feel for our families who could not help us and felt at a loss....

Sooooooo once again.............Smile though your heart is aching ~ yet another song xx

but too sad sooooo......after 3 Smile All and this is an order xx lol

Smile all xxxx

All the Best

(Bossy)WinB143 xx

Edited by Winb143
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Tom,

Rant all you want if it helps you ....and stop sitting on my Dock of the Bay lol ... j/k

Be Well and remember all of us have been through similar things in life.. So Come on, together we can beat anything life throws at us..Good Days and Bad days.....and we have got the memories when our brain lets us remember...So Cheer Up and ....feel for our families who could not help us and felt at a loss....

Sooooooo once again.............Smile though your heart is aching ~ yet another song xx

but too sad sooooo......after 3 Smile All and this is an order xx lol

Smile all xxxx

All the Best

(Bossy)WinB143 xx

Thank you WinB143 not quite ready for singing yet lol soon though very soon x x

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