Monday, October 02, 2006

The torture of pulsatile tinnutis, and neurofibromatosis.

I was just having a lie down in bed, but the pulsing in my ears is unbearable and I can't stand to be in a quiet place. It is driving me insane. Although I've been referred to a specialist (months ago) I have no sign of an appointment yet. It seems I could be waiting indefinitely. It's really starting to get to me.
And it's getting worse. It started months ago. A faint pulsing sound in my right ear, which would come and go and which I could only hear at night when it was very quiet. I used to almost have to 'listen out for it'. Gradually over the year it's got worse, louder, and into both ears. Last week it had got to the stage where it is a loud gushing heart sound, which I can hear during the day. I can even hear it with the sound of the TV and kids in the room. It is my heart beat, there's no doubt about that. I can hear it get faster when I'm stressed. But the sound is in my ear drum, not my heart, and it's clearly audible, not imagined. The doctor said it was unusual for someone so young to suffer from it, and so she referred me to the specialist. It is different to normal tinnitus, which can happen for no reason. Pulsatile tinnitus is usually caused by an underlying medical condition, and can be caused my small benign tumors in the arteries in the neck. I now have the sound in both ears, although worse in my right. But this week I am also hearing new noises. Electrical noises. They can last for anything between 5 and 30 seconds, these new noises, but they always stop, and once again I am left with the pulsing. It's almost as if my brain is an electrical circuit that is sparking and malfunctioning, in an audible way. My fear is that the electrical noises will become permanent too, and then I shall go mad, for certain.
When this first started I could get to sleep and then the noises would fade and I would have peace. Now I can't get any silence at night. I can't get into a position where the noise in my ears subsides, and to make it worse, the noises have started to wake me up! This is driving me crazy. I feel like I'm going deaf. I can't hear what people are saying on the phone, above the sound of my gushing heart beat. I miss lines in films because my ears decide to play a little electrical tune for a few moments. I can only describe it as torture, and if it gets any louder or becomes a noise other than my heartbeat I shall certainly be committed to an insane asylum.

Still, I should be grateful. There are far worse things that one could suffer from.

Which brings me to Steve. He went to the doctors today and had a gallon of blood taken for testing, poor guy. The doc thinks he may be suffering from an over active thyroid condition, which may or may not be caused by his neurofibromatosis, if a tumour is growing near the thyroid. He will get his tests back next week. She has also tested for a heap of other things. Steve was told that if an NF lump grew in an organ he would be ill. He has been ill, for many weeks. So far his lumps have all been in less serious places, mostly in his arm, in which he has undergone many operations. Maybe this is nothing to do with NF at all, but it's always a worry that a lump may be growing somewhere that could make him ill (his liver was mentioned by the dr). I guess we will know more next week when the results come back. He really needs a few weeks off work, to rest and recuperate. He has paid someone to run his shop this week so that he can have some rest, but we can't afford it, and he will not be able to do that again. I have offered to run the shop for him so that he can be at home, but then he will have to take care of the kids, which may well turn out to be a harder job than running a business! Oh we both need a good MOT and some new parts fitted.

I guess that's enough of a whinge for now. I generally cope well with stress, but worrying about Steve has taken it's toll on me and this afternoon I felt really quite unwell and upset. I just turned to jelly and had to lie down, only to be reminded of that hideous noise from which I can't escape. Writing things down like this is really quite therapeutic, and makes me feel an awful lot better.


Marian said...

Oh dear
It seems that everyone is getting their share of problems, including you and Steve. As soon as one of us struggles out of the woodpile, someone else needs a hand. Let us know if we can do anything to help. You have helped me a lot!

Anonymous said...

Haze if you need any help please ask. I ask you all the time!!!
If you need time to go to the docs or just to have a lie down, let me know and I'll watch the kids. Caroline

Anonymous said...

I'm so sorry Hazel. I wish I were closer to you. For what it's worth, I am here for you, in spirit, and I find it does help to blog about things too.


Lin said...

The noise thing sounds unbearable, perhaps its worth nagging the doc for that appointment?

Hope everything goes well for your dh too,


Hazel said...

Thanks all for your comments. I'll take you up on that babysitting offer Caroline! Anything for a bit of kip. My Mum is babysitting all day tomorrow so that me and Steve can go birthday shopping and chill for a bit. Woo hoo.

G.G.Dad Peter said...

Have just read your postings, you poor kids, I feel for you. Hope you soon get to see someone who can treat the tinnitus. I too get ocassional high pitched humming noises, but thankfuly not often, or for long
We shall pray for you both.

Ginger said..., I tried to find a way to send this in a message instead of a post, but I could not figure it out. Anyways, my name is Ginger and for the past few weeks I have been having the "heart beat" pulsing in my right ear. it is getting louder and louder as well. i feel as if i might have a stroke or something. I am only 25 and in decent health so I know that is a silly idea, but is a little scary. I looked up my symptoms and came across your post. Is there any advice that you can give me? It has been getting louder and after reading your experience I am worried that it will continue getting worse. Maybe I will see you in the insane asylum in the future (lets hope not, though). My email is Thanks for your help. Ginger