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Hello everyone! I am sorry to make my first post on this site one so long and so negative. But today everything just feels so hopeless. I had my SAH 4,5 months ago, and I know I am so lucky to survive it. During my recovery I have suffered bad headaches, strange sensations on my scalp, the feeling of pressure in my head, fear of death when going to sleep, immense fatigue etc. However, I sort of seemed to manage all of this without going completetly insane, probably mainly because of my husband and two children. They always seem to make me forget my troubles, for which I am thankful.

 

I was starting to feel alot better than before a few weeks ago and felt I was in a happier state of mind. Suddenly I was making progress, both mentally and physically. The headaches subsided and I was able to do more without immediately having to nap afterwards. Happy days.

 

Then, out of the blue, my left ear started playing a tune for me, day and night. I have always been sensitive to sound, and I am a very light sleeper. This sound, although in a fairly low volume mostly, is starting to make me feel crazy. It occasionally goes away, and even when it does, I just seem to wait for it to start again. And so it does, at completely random times. I went to sleep last night, everything quiet, and I was so happy.

 

Then, at 3 o’clock I woke up and there it was again, louder than ever. And it keeps following me today. I just can’t relax. I spoke to a stroke nurse yesterday, who said that according to the doctor, the sound was not in itself an indication of something dangerous. Therefore, it was not the hospital’s problem, and I had to go see my GP about it. So, I called and made an appointment for Monday, but something tells me they won’t find anything at all. I am guessing it’s just my head playing tricks on me. Anyway, it feels as if I have gone backwards in my recovery, and that is not a good feeling.

 

I don’t know what I wanted to say with this, really, I just felt I had to write this down to keep my mind from going mad. I am so glad I found this site and I hope you are having a good day today!

Tina

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Hi Tina

 

A very warm welcome to BTG from another Tina :) 

 

Sorry you are suffering so badly with Tinnitus, its horrible, feel for you !

You are still in the very early stages of recovery, i had this on and off for the first year in my recovery. It did improve over time, i still get the odd noise but fingers crossed not so loud.

 

One thing i will say, is that sometimes you seem to go backwards to go forwards in recovery, if that makes sense.

Maybe you are overdoing things, pushing too hard. Be kind to yourself and listen to your body.

 

Glad you have found BTG, you will find lots of caring friendly support and also lots of helpful information on the Forum. 

I really hope your GP can help you on Monday.

 

Look forward to hearing more from you.

 

Take care

Tina xx

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Hey there

 

Warm welcome, glad you found us.

 

Yes you are very early in your recovery, try not to think negitively that they wont find anything, just being able to talk it through with someone is a plus.

 

Keep hydrated and know there are other who understand what your going through.

 

Take care

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Thank you so much for your support, it really helps. It is also hopeful to know things will change and improve over time. And if the tinnitus persists, hopefully I will be able to accept it eventually. I am just so sensitive at the moment, and any changes to my health seem to make me anxious. I guess things that I may never have given a second thought before my SAH now feel slightly overwhelming.

 

Anyway, I'm so glad I decided to google "subarachnoid haemmorhage" in English and found you (I'm Swedish, and there does not seem to be any kind of support group at all for this here, but then again - it's a small country). 

 

 

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halla Tina!

 

I love Sweden, I used to travel back and forth to Gothenburg for work for a while pre SAH and it's a beautiful country filled with kind people.

 

Tinutus is something I found myself experiencing in quite a heightened way in the first year just like Tina did. I also have a friend who I have made from a SAH support group at my hospital who has had it ever since as her main lasting effect but it is horrible and unsettling and puts you on edge.

 

i used to just sit with it if that makes any sense and observe it, rather than trying to block it out I just noted it wasn't getting worse, the changes in sound and pitch and after a while it has mostly faded into the background. I have a permanent 'buzz' these days, a bit like a badly tuned radio but I rarely hear it but if I do too much then it will always get louder so my own view is that it does relate to how steady you feel.

 

i also had lots of 'creeping' feelings across my head and scalp and whenever that happened I would worry. I think worry is natural after what has happened, A sudden traumatic event such as a SAH will affect you emotionally and once you have done some of the major physical healing then the emotions can start to show. If you can Tina try to talk to someone , talking always helps if not write it down, that's cheap therapy too! 

 

Take care.

 

 

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Hallå Daffodil :)!

 

Gothenburg is such a nice town, I used to live there for a while and have loved it since. Now I live on the east coast instead, but I try to go back sometimes to visit.

 

Thank you so much for your useful tips and support. I tried the "sitting with it" and that really helps. I realise that I've tried to sort of run away from it, always keeping busy so I wouldn't notice the sound. This has me really exhausted of course. Rather than taking it easy as the doctor told me to, I have been doing the opposite...Anyway, as you suggested I have now booked an appointment to talk to a therapist about it.  Up until now I have been using my husband as my "therapist", but although he's great at making me feel better, this time it might be better to see a professional to deal with my emotions. 

 

Take care

Tina

 

 

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Great to hear your moving on making an appointment, yes agree with you using someone as a 'therapist' is good but the professional knows how to get so much more... 

 

On the Swedish front, I worked for a shipping company and within it was the Swedish consulate I was on reception but we had lots coming in for their new Passports/driving lic/ID cards.

 

Take care

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Good luck with talking to a therapist Tina, I am a big advocate of talk and it's power of healing. Hopefully you will be able to discuss all the things bothering you and maybe see some way to make improvements. 

 

Re the tinnitus as Daf says ' sitting with it' is a great idea. If you have been rushing about to try and take your mind of it that has probably exhaused you and possible made matters worse. One thing you need at your stage in recovery is rest so make sure you take it together with plenty of water. You sound like you are doing really well so  I hope things improve for you, keep us posted.

 

Take care

 

Clare xx

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I get it also TinaW,

 

Also I get bad heads on thundery days  I am sitting hear hearing the whoosh sound and a high pitched noise.

 

I was told it is part and parcel of a head injury so I sing xx My poor Family xx 

No Stress so try happy thoughts or sing xx 

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Thank you all! I had my ears checked and there was nothing visibly wrong with them, then again I did not expect there to be. Luckily, the noise is not constantly loud, but mostly a background noise, and I am learning not to panic when it does increase in volume. But I am surprised at the wave of emotions that I have felt since my ear started to bother me.

 

I get these memories from being in hospital, waking up from being in an induced coma for a week, seeing my family again and their worried faces. It makes me so sad, that I made them so worried, especially my young daughters. I guess I have to remember these things to move forward in my healing process, but it is exhausting to be sad. I am very much looking forward to seeing the therapist on Friday. Meanwhile, I will try your advice Win, to think happy thoughts and sing :).

 

 

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  • 2 weeks later...

Sorry not replied TinaW  as Daughter broke her ankle arghhh good in our house lol 

 

Good luck for Friday and do not forget the list you want to tell Therapist about  xx 

 

I felt like that when my Daughter grabbed my arm and said "Welcome home Mum" we both blubbered and now we argue  lol xx

 

Good luck once again and let us know how you get on xxx  

 

Bless you and remember  Monty Python song:~ Always look on the bright side of life.. dee dum  dee dum dee dah

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I too suffered with very bad Tinnitus, and got checked out. Much to my dismay found out I've got congenital deafness, there's me thinking my SAH had worsened my hearing.

Anyway unfortunately there's not a great deal of medical treatments for Tinnitus, however reducing on caffeine apparently helps, sometimes feeling stressed also exacerbates the ringing, so try to remain in a calm environment.It will get better overtime with your recovery.

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  • 2 weeks later...

Hello again, and thanks for your support. I hope your daughter feels better, Win! And sorry to hear about your congenital deafness, Missy67. It is reassuring to hear that the tinnitus gets better over time. 

 

I am feeling a lot better at the moment, although the ringing is still with me, sometimes louder and sometimes very low. My mind has been elsewhere for the past week as I just came back from a holiday in the Canary Islands (after having read many posts here about flying post SAH I felt a bit better about it and decided to go for it - the trip was booked before my SAH).

 

The stress before this trip was tremendous, but it all went fine, and this week in the sun with my family turned out to be a bit of a break from thinking unhappy thoughts and just listening to the sound in my ear...A bit fatigued now, but I feel that I regained a small piece of my former life by mustering the courage to travel. 

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Hi Tinaw, that trip sounds fab? I hope you feel relaxed & refreshed.

 

I too get tinnitus, never had it before. My nasah was 19 months ago now. I notice it more when I’m trying to switch off & go to sleep, but sometimes during the day. I still get lots of odd sensations & occasional pains. I also get the barometer head which makes me feel ‘a little out of it’. Last Friday I was so tired I felt like a robot running out of batteries, no energy whatsoever. I just had to sleep. Listen to your body & rest when you need to.

 

Take care of yourself ??

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Tina, so pleased you had a holiday and that would have been good to just rest up and slow things down. It will also help with confidence after the bleed.

 

My tinnitus still lets me know if I am doing too much, it is one of my early signs, ( which I ignore too much and too often) that I should stop and rest as it jacks up the intensity and volume. As I have said I just try to sit with it and that works best for me as it makes me pause and that's what I need at that moment.

i ignore it at my peril really but I see it as one of my amber lights rather than a hard red stop! 

 

Take care, go steady 

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Hi Casey - not heard of hearing aids helping with this.  Have heard that constant low background noise helps as the brain tries to listen to that and the tinnitus then "disappears" whilst the brain is concentrating on another noise.

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Hi Casey

 

Mrs Subs has benefitted from using a hearing aid to help reduce her tinnitus.  She reckons that it reduces the sound by around 60%.  She has been using hearing aids for about ten years... some years before her SAH.

 

 

Subs

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  • 2 weeks later...

That's great, Casey, that you found something that is making the noise more tolerable and that also helps your hearing. 

I am still trying to sort of monitor in which situations my tinnitus gets worse, as I have only had it for a couple of months now.  My tinnitus is tolerable at the moment but I would definitely look in to getting something that could help mask the noise if it gets worse. Thanks for the info!

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Ah - tinnitus - I still suffer from the constant whining some 6 years on.  Occasionally it recedes a bit for a few moments - but never quite goes.  I am driven to distraction during the summer months when the world and his wife are out using their power tools morning, noon and night because that makes it so much worse.  (They're even at it still in November and this is meant to be the peace of the Devon countryside!)

Just at the moment, I am making arrangements to move to France where at least they have some regulations about the times they can make such noise.

 

How do I counteract it?  Well - during the day, I sometimes confine myself to the house and close all the doors and windows.  I open the doors when they have stopped making the noise.  At night, to get to sleep, I employ 3-surround sound at low level - that's a radio set low on sound and a personal radio likewise low, straight into my ears - the BBC World Service is wonderful for me but I imagine anyone could do the same with soothing music!  But words work best for me. Hope this helps!

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I just wanted to check in to say that unfortunately I'm feeling very low at the moment. I had three weeks when the tinnitus didn't bother me too much, but in the last few days something happened. As I woke up one morning, I suddenly felt that my hearing had decreased in my bad ear. I felt like I was under water, all sounds became really distorted. Also, the ringing was louder and I noticed I was super sensitive to noise. Even having a shower was too loud for me.

 

My anxiety levels have since then risen, as this feeling wouldn't go away the next day. I went to an ENT specialist in hospital to check my hearing, and actually the hearing in my left ear was worse than before. No explanation given other than I probably had been exposed to loud noise at some point. She did not think this was connected to the bleed as I had no other neurological symptoms.

 

Today, I am at an absolute low point. Extremely sensitive to all noise, difficulty sleeping, and very, very anxious. I'm finding this incredibly difficult to cope with, and lack of sleep just makes it so much worse. I'm sorry for the rant, but I really don't know where to turn, my poor husband is trying to cope too and is getting tired of listening I think. Did anyone experience anything similar, and any advice as how to cope with this?

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Hi. I had my sah 3 years ago and my ears have been my biggest problem. I am very sensitive to noise and my ears feel blocked or full. I was referred to an ENT doctor who first of all did not believe that I had a brain Haemorrhage as I had not had a procedure to fix it so I must have got my facts wrong. If only! He then said it was due to being exposed to loud noise and I shouldn't use headphones. I never have. Once I got over this upset I decided the only way forward was self help. I monitored my ears and noticed that they changed from unbearable to ok at similar times each month.

 

I then researched this and read that vestibular disorders in women can be intensified by hormone levels. I think it's to do with fluid retention. so now I am taking a female specific vitamin tablet. Try to avoid salt too much sugar alcohol and caffeine. I also try to exercise even if it's only long walks as this reduces my stress levels which definately make my ears worse. 

 

This has not cured me but has made the symptoms lessen considerably and I don't panic about it anymore which is so important. 

Being tired makes them bad. 

good luck. I feel for you 

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Thank you so much, Gilly. I do look forward to a time when I won't panic anymore.

 

It is completely draining and really doesn't lead to anything good. And still I have been in a panicky state for most of today. 

 

I actually almost went to A&E as I was feeling so bad. Now I am glad I stayed in bed resting instead of waiting endlessly in a hospital, getting even more fatigued.

 

Still feel quite anxious though, but fingers crossed I will get some more sleep tonight. I will try to monitor my tinnitus from now on.

 

I was going to, but it felt ok for a while so I never did. I have a bad habit of thinking that whenever I have a terrible day, I think I will feel that way every day from now on. Not very constructive.

 

A diary would probably be helpful to be able to look back and see that there have been good days (and in all fairness I have had many good days since the bleed). BTG is truly a blessing on these days when everything seems hopeless. 

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I went to an A & E in the beginning because I had no idea that being stressed and anxious could make you feel so sick.  You did well to rest it out it took me a long time to learn that one. I now have to breathe and ask myself if if feels the same as the original event. When I get to grips with the fact the answer is no I can control my panic.

i have to remind myself that anxiety raises adrenaline which is the flight or fight response. I think my ears become super sensitive to hear the enemy. But I'm my own enemy! 

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  • 2 weeks later...

Hi, I just wanted to make an update again if anyone else can be helped by what happened to me. As I said in earlier posts I had been feeling quite unwell for a while, my tinnitus had increased and my ear started to feel full and I couldn't hear too well. Also, I had headaches, I couldn't take a short walk without being short of breath, my legs were shaky and frankly, I was in a state of panic thinking that something was very wrong.

 

All these symptoms I just put down to general fatigue, but I couldn't understand how I could be feeling so bad all of a sudden. Then I received a message from my doctor, that the blood samples they had taken a few weeks ago showed that I was anemic. They wanted to run some more tests, so I went to my GP's office. There, the blood tests showed that my blood count was very low, so low that my GP sent me to A&E for a possible blood transfusion. I was not given one, as I apparently looked to well for this. (I was not feeling that well, though).

 

Anyway, apparently my iron levels were very low, and this is what caused the anaemia in my case. Instead of blood, I received an intravenous iron drip (never heard of it before). This is quicker than eating iron supplements and also doesn't upset your stomach at all. The body is given all the iron it needs in one go, and then it takes a while for the body to use the iron to actually increase blood count.

 

After the iron drip I felt like a completely different person. It has been a few days now and all the symptoms I had before have diminished or gone. My ear hears fine again, tinnitus on very low volume (apparently anemia can cause or worsen tinnitus), I am able to take a walk without having to stop all the time, and the general feeling of unease has lifted. I am so glad that I had routine blood tests done a while ago and that my doctor contacted me. 

 

The anemia in my case is probably caused by the fact that I had stents fitted as well as coils. The doctors told me that for the stents to grow in to the blood vessels and not cause clots, I have been on two different blood thinners simultaneously for six months since my SAH. This has made me bleed a lot every time of the month, but I haven't given it a second thought, I never believed anemia could come so quickly.

 

Since six months have passed now I only have to eat one blood thinner from now on and only for another six months, and I hope that this will help. If it doesn't, at least I am monitored closely now. So, if anyone experiences anything like this, it might be worth checking if you have any deficiencies that can be helped.

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Hi Tinaw

 

Thank you so much for your update and so very pleased you have got to the bottom of why you were feeling so unwell.

Your post will be very helpful for others to read if they have similar symptoms.

 

Great news you are being monitored closely now.

 

Take care and keep in touch.

 

Love Tina xx

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