Wow, I have found a forum for people who suffer from tinnitus, and I left a post about pulsatile tinnitus. I got many repsonses and I thought I'd post a few of them on here. People really can't understand what this condition is like, but reading how people live with it might help people sympathise. It wsa good for me to see that I'm not alone....
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I have been suffering from pulsatile tinnitus for about 9 months - left ear only. I used to mainly hear it at night lying in a certain position. I now in the past month have started to hear it more during the day. Often it is made worse by certain head movements and sounds like a whooshing noise when I bend over. I have been to my GP 3 times and also went to casualty as I thought I was having a heart attack. Casualty carried out ECG and listened to carotid arteries and said everything was normal. GP listened to carotid arteries, said everything was normaal, they also took my blood pressure which was slighly below normal. GP's have made me feel foolish, but I am concerned about what is causing this noise. I had to insist on a referral to ENT, which I am having to pay for privately. My ENT appointment is on Tuesday 9/10/07 - what should I expect from this. What are the best questions to ask.Grateful for some advice
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I have pulsatile Tinnitus it is more a problem at night it keeps awake and I have trouble sleeping. During the day I feel dizzy all the time and I have to make sure somebody is with me. I have stopped going out as at night time is worse and if I do the noises stay with me and they are still there in the morning. I feel sometimes that nobody knows how you feel. I think that GP`s have no understanding of the condition. I would like any advice or help from anyone as I am at my wits end and dont know how to carry on with a normal life.
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Yes I unfortunatley suffer from pulsatile tinnitus. Last year I thought I was going nuts with this constant thumping in my head and the doctor told me it was migrane. I phoned my ENT and made an appointment last November and I was told I had pulsatile tinnitus but there is nothing you can do. I was really struggling (still am) and was given an appointment in July. II was taking panic attacks with it but I joined this forum about a month ago and have taken great comfort from it. I to don't know anyone with the pulsatile tinnitus and felt I was totally alone. I have started talking about it more and my work are very supportive.
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I got through another day and after having had a decent night's sleep, I had a few hours wher I was so engaged in what was going on around me that I almost forgot about it. I took a walk and listened around the T to hear the birds and all the little delicious sounds I hold so dear. It was a precious moment.
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Yes I also get the neck pain and back of my head. Sometimes I feel as if my head is going to burst. I often feel dizzy and sick particulary when it is bad and need to just sit for a while until it passes. It has affected my quality of life, I even panic sometimes when I have to go out alone but now that I know what it is I feel slightly stronger in order to manage it
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Pulsatile tinnitus is a big problem for me. There are many nights the sounds are so loud, and my head is so painful, that I feel like putting a bullet into my ear, or scraping my ear drums out with a screwdriver.
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Showing posts with label pulsatile tinnitus. Show all posts
Showing posts with label pulsatile tinnitus. Show all posts
Sunday, 7 October 2007
Wednesday, 26 September 2007
The noise that never stops...
Two weeks ago I had a meeting at the local hospital with the Tinnitus Management team. It was great to finally talk to someone who was sympathetic to the suffering of pulastile tinnitus. And who also knew the difference between pulsatile tinnitus and regular tinnitus. We talked for an hour and I was given lots of advice. They gave me a special pillow speaker, but I still need to purchase some sort of relaxation CDs to play with it. The CD's I have are not really conducive to a good nights sleep. They have also order me a special masking hearing aid which I will get in about 4 weeks time. The idea is that it plays white noise into the ear, at a pitch that masks the sounds of my gushing blood and heartbeat. I think it supposed to train the ear to mask our internal body sounds or something. I'm not sure if it will work, but to be honest, if I can listen to white noise instead of blood noises for a while then it will be a pleasant change. I'll let you all know how I get on with that.
From the day after my appointment I have been suffering miserably with the tinnitus. It is always there, 24 hours a day, but at times it gets worse. They tell me its stress that causes it, but I can't see that pattern in mine to be honest. But now, for over a week, I have been miserable with it. The gushing sounds are louder than ever. I can't sleep, can't concentrate, can't have a conversation without struggling to stay on track. And whenever the tinnitus is bad like this, I get awful headaches, pain in the back of my neck, and pains in my chest. Whether these pains come from the lack of sleep, or are caused by the blood flow problem in my arteries, I have no idea.
I joined a forum for Tinnitus sufferers on the RNID website. There I have met other people who also have the pulsatile form of the condition. It's been good to see how others cope with it. This week I have really come to understand why people get so depressed suffering with this. I have been constantly miserable. I am unable to lead a normal life when its this bad. At night I just want to claw ouy my ear drum with a screwdriver, and I have now come to understand why the tinnitus management team talked so much about suicide and depression. On the RNID website I found a link to this real player sound clip. I urge anyone reading this to listen to it. It plays many of the sounds of tinnitus, so that non tinnitus sufferers can understand better what it is like to live with the sound that never stops. You can listen to it by clicking here. Also, worth watching is a youtube video which tries to show what life is like for tinnitus sufferers.
From the day after my appointment I have been suffering miserably with the tinnitus. It is always there, 24 hours a day, but at times it gets worse. They tell me its stress that causes it, but I can't see that pattern in mine to be honest. But now, for over a week, I have been miserable with it. The gushing sounds are louder than ever. I can't sleep, can't concentrate, can't have a conversation without struggling to stay on track. And whenever the tinnitus is bad like this, I get awful headaches, pain in the back of my neck, and pains in my chest. Whether these pains come from the lack of sleep, or are caused by the blood flow problem in my arteries, I have no idea.
I joined a forum for Tinnitus sufferers on the RNID website. There I have met other people who also have the pulsatile form of the condition. It's been good to see how others cope with it. This week I have really come to understand why people get so depressed suffering with this. I have been constantly miserable. I am unable to lead a normal life when its this bad. At night I just want to claw ouy my ear drum with a screwdriver, and I have now come to understand why the tinnitus management team talked so much about suicide and depression. On the RNID website I found a link to this real player sound clip. I urge anyone reading this to listen to it. It plays many of the sounds of tinnitus, so that non tinnitus sufferers can understand better what it is like to live with the sound that never stops. You can listen to it by clicking here. Also, worth watching is a youtube video which tries to show what life is like for tinnitus sufferers.
Tuesday, 28 August 2007
Still broken footed and deaf
Grrr, this morning I had my 6 week review at the hospital, for my broken toes. I got there at 8.30am and was taken in for an x-ray. Then I stood (no seats left) for about 40 minutes and waited to be seen. My foot is still sore, but I'm not on crutches any more. It hurts if I stand too long, or if I knock my toes at all, but I expected them to tell my it was all fine and send me on my way home. To my surprise everything is not fine. Two of my toes are still broken. The doctor thought the x-ray he was looking at was my original one taken 6 weeks ago, but no it was today's x-ray. That explains why its still sore then. He said there is some mild improvement, but they are healing very slowly (I wonder if I did re-break them that time I stabbed my foot against the coffee table?) They are going to see me again in 8 weeks, but he warned me that it looks like they may not heal. I don't know if that means I will have two dead broken toes for the rest of my life, or if they will try to fix them. He has warned me against any belly dancing and told me to stop banging them against things. Easier said than done when you have feet like flippers. I nearly wet myself laughing when I told the doctor that I wanted to carry on belly dancing. He looked me up and down and seemed rather amused, till I realised he thought I'd said ballet dancing. Whahaha. Anyway, he said absolutely no belly dancing. I didn't tell him about the dance session I'd had in the kitchen yesterday to the tunes of Metallica, hehe.
Oh yes, I just remembered, I forgot to tell you about the appointment I had last week about my ears and the pulsatile tinnitus. You remember I had a scan on my neck some months back? Well, I finally had an appointment with the ENT consultant regarding that. The carotid artery in my neck is rather deformed and they seem sure that this is creating a kind of back lash of blood which is making a lot of noise, which is audible to me. They were most delighted to have found a cause for my symptoms, as most people never find out what is causing it. I thought the consultant was going to do a little dance of joy at one moment. Anyway, they could operate to fix the artery, but, the operation is so extremely risky that they would really only consider it if the tinnitus noises were making me suicidal (which they aren't, but I hear that can happen to some people). They are putting me in touch with a therapist who is supposed to be on call to counsel me when the noises are just too bad. I highly doubt I will ever avail of those services. But, I have an appointment next week at the hearing aid department. Yes, that's right, hearing aid. They want to try to fit this special hearing aid that emits a sound into the ear. The sound is at a pitch that works with the sound I'm already hearing. The theory is that the two noises cancel each other out, or that my ear is retrained to hear differently. It all sounds like utter nonsense to me, but hey, I may as well give it a try. It will be interesting if nothing else. On the positive side, I'm also getting a special pillow with inbuilt speakers that plug into an mp3 or cd player. Now this sounds cool. A musical pillow. The idea is that the speakers are audible to the person sleeping on them, but not the person next to you. The only problem will be chosing music that helps me sleep, rather than the heavy metal stuff I mostly listen to.
Oh yes, I just remembered, I forgot to tell you about the appointment I had last week about my ears and the pulsatile tinnitus. You remember I had a scan on my neck some months back? Well, I finally had an appointment with the ENT consultant regarding that. The carotid artery in my neck is rather deformed and they seem sure that this is creating a kind of back lash of blood which is making a lot of noise, which is audible to me. They were most delighted to have found a cause for my symptoms, as most people never find out what is causing it. I thought the consultant was going to do a little dance of joy at one moment. Anyway, they could operate to fix the artery, but, the operation is so extremely risky that they would really only consider it if the tinnitus noises were making me suicidal (which they aren't, but I hear that can happen to some people). They are putting me in touch with a therapist who is supposed to be on call to counsel me when the noises are just too bad. I highly doubt I will ever avail of those services. But, I have an appointment next week at the hearing aid department. Yes, that's right, hearing aid. They want to try to fit this special hearing aid that emits a sound into the ear. The sound is at a pitch that works with the sound I'm already hearing. The theory is that the two noises cancel each other out, or that my ear is retrained to hear differently. It all sounds like utter nonsense to me, but hey, I may as well give it a try. It will be interesting if nothing else. On the positive side, I'm also getting a special pillow with inbuilt speakers that plug into an mp3 or cd player. Now this sounds cool. A musical pillow. The idea is that the speakers are audible to the person sleeping on them, but not the person next to you. The only problem will be chosing music that helps me sleep, rather than the heavy metal stuff I mostly listen to.
Tuesday, 24 July 2007
Tinkhani Update - and a little general health update about me too!
I was delighted to receive a letter from Tinkhani this week saying that for the first time since he's been in prison he has put on weight. One month after received the money donated by some of my generous blog readers, he has put on 3kg in weight. He is completely delighted, needless to say, and so am I. He has asked me tell you all this good news.
He has also informed me that the Zambian government are re-writing their rules regarding prison sentences. A lot of prisoner have been freed or had their sentences reduced. Tinkhani is hoping that he will no longer face the death penalty and has asked that we all keep this in our prayers and thoughts for him and the other handful of prisoners who are facing death for robbery. Hopefully he will have great news for me in his next letter.
He has sent me some handmade wooden pens, each with a name inscribed into it. There is one for each person that donated money for him. I will have to forward these on to you all individually. There is also one for Tammy who sent him a lovely Christmas card. Tammy if you email me your address I can post it on to you. I will be gathering some more money to send sometime soon, so if anyone wants to donate you can contact me at cleopatrani@hotmail.co.uk
I'm still on crutches at the moment but can just about get by on one crutch now. Although I can't over do it. I went to the doctors today and she seems to think that my middle toe is permanently damaged and will probably be paralyzed. I guess I should be bothered, but I just laughed. It all seems so silly to me. All this fuss over some toes. She also told me that she had received a letter about my jugular artery scan. It seems that they did find something after all, despite waiting almost 3 months for my result appointment. They found a curve in my jugular artery. My appointment to discuss this isnt until the end of August. However the curve is on the left side of my neck, and the noise is in my right ear, so the doctor seems think that this may not explain the problem, although from the letter the consultant seems to think it does. So I guess I have to wait and see. It's a good job I'm so patient eh? :)
He has also informed me that the Zambian government are re-writing their rules regarding prison sentences. A lot of prisoner have been freed or had their sentences reduced. Tinkhani is hoping that he will no longer face the death penalty and has asked that we all keep this in our prayers and thoughts for him and the other handful of prisoners who are facing death for robbery. Hopefully he will have great news for me in his next letter.
He has sent me some handmade wooden pens, each with a name inscribed into it. There is one for each person that donated money for him. I will have to forward these on to you all individually. There is also one for Tammy who sent him a lovely Christmas card. Tammy if you email me your address I can post it on to you. I will be gathering some more money to send sometime soon, so if anyone wants to donate you can contact me at cleopatrani@hotmail.co.uk
I'm still on crutches at the moment but can just about get by on one crutch now. Although I can't over do it. I went to the doctors today and she seems to think that my middle toe is permanently damaged and will probably be paralyzed. I guess I should be bothered, but I just laughed. It all seems so silly to me. All this fuss over some toes. She also told me that she had received a letter about my jugular artery scan. It seems that they did find something after all, despite waiting almost 3 months for my result appointment. They found a curve in my jugular artery. My appointment to discuss this isnt until the end of August. However the curve is on the left side of my neck, and the noise is in my right ear, so the doctor seems think that this may not explain the problem, although from the letter the consultant seems to think it does. So I guess I have to wait and see. It's a good job I'm so patient eh? :)
Wednesday, 23 May 2007
Carotid artery doppler scan
For those that are waiting to hear, I had my scan today and I'm none the wiser yet. The doctor scanned both sides of my neck. I was able to see the images from the left side of my neck (the good side) but I had no idea what I was looking at. I couldn't see for the right side as I was facing the wall. Confusingly the doctor spent twice as long scanning the good side of my neck as he did with the problem side. I'm not sure if that's a good sign or not. Perhaps there was something so obvious on the right hand side that he didn't need to look any further. Who knows? The scan machine made lots of gushing heartbeat sounds, which sound exactly the same as the noise in my ear. The doctor grunted, scratched his head, huffed and scanned a bit more. Then he said "right" - handed me a tissue to clean up all the goo "that's fine" and marched straight out of the room. The nurse then pointed me to a cubical to get changed again and I was on my way home. I have no idea whether he meant "that's fine, I can't see anything wrong", or "that's fine, I've gathered all the data I need to make a diagnosis". So I am none the wiser and will have to play the waiting game again until the next appointment with my consultant, whenever that may be.
Monday, 21 May 2007
Bits n bobs & Tinkhani
I thought I better write a general update post as I've been quite slack and a lot has happened. First though, I'd like to say thanks to those of you who have emailed with hints and tips for our planned trip to the Americas. I will reply as soon as I get a moment to myself.
To those of you who donated money to Tinkhani, you may like to know that I received a letter from him last week. He has finally received the money. It took me some time to get it to him as I had to arrange for a church in Southern Ireland to take the money into their bursary. Then then had to wire it to a priest in Zambia which took almost 6 weeks. The priest could not collect the money until he made his monthly trip into the city. Then he had to go back to the prison to deliver it to Tinkhani. Next time the process wont take as long as I've already done the research.
I received a letter from a very delighted Tinkhani who informed me that he was eating a banana for the first time in many years. He is now able to buy nutritional foods to help him fight his AIDs and hopefully build up his immune system and put on some weight. He couldn't thank us enough. I will type some of his letter into a blog post about it soon.
I will also write a special blog post with photos from our belly dance performance evening which was on Saturday. If you know my bebo address you can see the photos there already.
On Wednesday I have the appointment for my carotid doppler scan on my neck. The pulsatile tinnitus is really bad at the moment. I'm kind of hoping it stays bad for the scan. Last night was a particularly bad night. The whooshing sounds in my ear got very loud indeed (and still are). I was sitting on the bed and felt quite ill with it. During the night I woke to feel a pressure on my chest, as if someone was pushing down on it. My chest felt like it was full of fluid. Every time I turned onto my side I could feel a sensation of fluid draining across my body. It was not pleasant at all. This morning I spent 2 hours with a fluidy feeling across my chest, and a mild pain when breathing in, so I phoned my doctor for advice. I have had these symptoms many times when the tinnitus is at its worst. My doctor requested I went straight to the surgery for an ECG test. Well, when I got there the fluid feeling had gone, but the pain was still there. They hooked me up to all these wires and did a sort of 5 second ECG. My heart appeared fine. She couldn't hear any fluid in my chest and I appeared normal. So I don't know whats going on. Now it is 1.30pm and my chest is still sore. At least I can explain all this at my scan on Wednesday. The doctor said that if the ENT people can not find anything I will then be referred to a heart specialist. I just wish someone could actually find something that matches my symptoms, because at the moment I'm sure they think I'm making it all up!
Well I have to go and make Barney some lunch now but I will post tonight with photos from the belly dancing evening.
To those of you who donated money to Tinkhani, you may like to know that I received a letter from him last week. He has finally received the money. It took me some time to get it to him as I had to arrange for a church in Southern Ireland to take the money into their bursary. Then then had to wire it to a priest in Zambia which took almost 6 weeks. The priest could not collect the money until he made his monthly trip into the city. Then he had to go back to the prison to deliver it to Tinkhani. Next time the process wont take as long as I've already done the research.
I received a letter from a very delighted Tinkhani who informed me that he was eating a banana for the first time in many years. He is now able to buy nutritional foods to help him fight his AIDs and hopefully build up his immune system and put on some weight. He couldn't thank us enough. I will type some of his letter into a blog post about it soon.
I will also write a special blog post with photos from our belly dance performance evening which was on Saturday. If you know my bebo address you can see the photos there already.
On Wednesday I have the appointment for my carotid doppler scan on my neck. The pulsatile tinnitus is really bad at the moment. I'm kind of hoping it stays bad for the scan. Last night was a particularly bad night. The whooshing sounds in my ear got very loud indeed (and still are). I was sitting on the bed and felt quite ill with it. During the night I woke to feel a pressure on my chest, as if someone was pushing down on it. My chest felt like it was full of fluid. Every time I turned onto my side I could feel a sensation of fluid draining across my body. It was not pleasant at all. This morning I spent 2 hours with a fluidy feeling across my chest, and a mild pain when breathing in, so I phoned my doctor for advice. I have had these symptoms many times when the tinnitus is at its worst. My doctor requested I went straight to the surgery for an ECG test. Well, when I got there the fluid feeling had gone, but the pain was still there. They hooked me up to all these wires and did a sort of 5 second ECG. My heart appeared fine. She couldn't hear any fluid in my chest and I appeared normal. So I don't know whats going on. Now it is 1.30pm and my chest is still sore. At least I can explain all this at my scan on Wednesday. The doctor said that if the ENT people can not find anything I will then be referred to a heart specialist. I just wish someone could actually find something that matches my symptoms, because at the moment I'm sure they think I'm making it all up!
Well I have to go and make Barney some lunch now but I will post tonight with photos from the belly dancing evening.
Monday, 2 April 2007
MRI appointment
Well, I had it, my MRI results appointment. It seems I was mistaken about what the scan was for. The doctor told me that the MRI scan was looking for tumours in my ear, whereas I was under the impression that they were looking at the blood flow in my neck. Needless to say they didn't find any tumours in my ear. I could have told them that. I was quite annoyed after the appointment. The doctor told me that pulsatile tinnitus is caused by one of two things, both of which are very rare. Even though my symptoms match the rarest cause, they decided to test for the less rare thing - even though that test costs more, is more terrifying (claustrophobic) and is looking for something that doesn't match my symptoms. For goodness sake! When I asked the doctor why they had been looking for tumours when my symptoms match more with the vascular problem, he simply stated that it was because vascular tinnitus is much rarer. Ok, so it's rare, but someone must have it, right? Anyway, it seems I waited 2 months for an appointment to tell me that they now need to scan my neck. Why on earth didn't they just send me an appointment for the new scan, instead of making me wait to months to tell me that they would do it. It seems so simple to me. Am I the only one who can see it? Anyway, I was cross. At my very first doctors appointment, over a year ago, I was able to tell the doctor that the conditions is vascular, that it is something to do with my neck artery. But here I am, months and months later, being told, "Hmmm, it must be something to do with your artery". I know that the condition is vascular.... because it gets worse when my blood pressure goes up (if I eat salt, do exercise, get stressed), because it changes depending on which way I turn my neck. So, here I am, waiting again, waiting for another scan, this time to my neck. Ah for goodness sake.
Monday, 12 February 2007
MRI scan
Yes, today was our 13th wedding anniversary. We agreed not to get each other anything, seen as we bought the dehydrator and the dishwasher as a gift to ourselves. I kept my end of the bargain. Not even a card was bought by me. But not Dan. No. This afternoon a taxi pulled into our driveway. I thought he had got the wrong house. But he knocked on the door and delivered me a huge bouquet of flowers. So Dan didn't keep to his side of the bargain. But they were lovely flowers.
This evening I had my MRI scan. Mum came to babysit the kids so that Dan could come with me. I wanted him in with me because I know I can be a little claustrophobic at times. Although, I've never been in a situation where I've been confined, so its hard to be sure if I am claustrophobic or not. So he came with me. I wasn't at all nervous. When I went to the reception the nurse said that Dan would have to wait in the waiting area. I asked if he could come and she said 'no'. Then I said that I was a little claustrophobic and would feel happier if he was there. So she agreed, but he would have to fill out forms and take any metals items off of him etc. She seemed a little annoyed at the extra paper work. I felt a bit of a con for asking for him to be there as I'm not really that claustrophobic.
I had to remove all my jewelry, my glasses, my metal under-wired bra! (I never even thought about it!) and answer lots of questions concerning metal and operations. Then she took us into this room. At this point I had no glasses on so I couldn't really see a thing. She said "pop up onto that bed there". Steve sat at the side of the room. I had said to Steve before hand "I will be OK as long as a) they don't strap my head in, b) I have at least an arms length of room or c) they only put my head into the machine and not my whole body. If they did 2 of the 3, but not all 3, I would be fine. So I lay on the bed. The nurse said "I'm just putting this aerial on your head". No problem. But this aerial was not an aerial, it was a metal head cage, like something off of Silence of the Lambs! It was strapped across my head and locked into position. My eyes peered out from the gaps. "I'm OK" I thought "I can cope with that". The nurse had already put some headphones on me with my favourite CD playing. Over the sound of music I just about heard her say "if you're claustrophobic you may want to close your eyes". This was the only information I was offered. I wasn't told what would happen, or anything more than this. No my mind, I should have been shown the machine, told how far I would go in and talked through the process.
I felt her put something in my hand. "This is the alarm. You can press this if you are in any distress". OK, lying very calmly in my head cage. Then I closed my eyes and felt the bed moving. I was fine. Eyes closed. Listening to my music. Been there for about 12 seconds, give or take. So I thought, "Hmm, I wonder what's happening. I'll take a look around". I opened my eyes. BIG MISTAKE. To my horror my entire body was caged in what I could only describe as a sterile white plastic coffin! The top of the tube/machine was only inches from my nose. My heart almost exploded with terror. At this point I realise I really am claustrophobic and all sense or reason disappeared. I tried to move my arms but couldn't stretch them. A, B and C had all happened to me and I lost the ability to stay calm. It was very unlike 'me'. I pressed the panic button. The nurse thought I'd pressed it my mistake. They I started shouting "get me out of here, please let me out" and as the panic raced through my body I was about to start kicking and breaking their equipment when I felt the bed moving out. Oh thank god. I was out. They took the brace off my head, I sat up and have never felt so utterly horrendous in my entire life! And my sensible head was telling me how daft I was being, but my body was having a panic attack.
I sat bolt upright. My mouth had gone completely dry, just instantly dry, it was so weird. My lips were tingling and my heart was pounding through my chest wall. I could hear the nurse saying "you opened your eyes didn't you". She started telling me that I had to go back in because the scan was important. She said that if I did it again once the machine was switched on (I hadn't yet got to that stage) that she would lose all the magnetic power and they wouldn't be able to do the scan. I really wanted to get the scan done so I lay back down quickly because if I'd had time to think about it I'd have run out of the building. She said Dan could stand at the machine and hold my feet to comfort me. They strapped my head in again, put the music on, and I shut my eyes as tight as I could. I clenched my fists round that alarm and tried to breath slowly. I really needed a paper bag. I felt the machine moving again and my heart was just pounding so hard. I couldn't breath normally. My lips were shaking. I've seen peoples lips and hands shake from fear but never experienced it. But now my lips were shaking uncontrollably, as were my hands. My eye lids were shaking up and down whilst my eyeballs were shaking from left to right! Honestly. It was so hard to keep them closed as they were flickering everywhere. And the whole time I was trying to tell myself how silly I was being.
I lay there, paralysed for about 20 minutes. I daren't move a muscle for fear that I would panic again. I could feel Dan rubbing my legs and feet, and tapping in time to the music on me. I tried to concentrate on the words to the songs. I took the Serene and Pearl CD 'Peace All Over Me' because the words are inspiring and create great images in my mind. I tried so hard to listen to the words and block out what was happening. But the machine was so noisy that I could barely hear the music. I did not open my eyes once. If I had opened them, I would have lost it completely. I just lay there, trying to breath. The noises were very loud. Metal clanking noises, bashing and crashing, and robotic noises too. After what seemed like an eternity I felt the bed moving. I didn't open my eyes till I felt the head cage go, just in case I'd got it wrong, and the bed wasn't moving at all, LOL.
The nurse said nothing but "you're free to go now". Whilst I tried to compose myself after the most horrific half an hour of my life. It took me about 2 hours to calm down. Even typing this I'm getting palpitations. Dan had to stop at a cafe on the way home and buy me a cup of tea and a lemon meringue pie.
I have learnt from this that I am extremely claustrophobic. I am sure measures should be taken for people like that having MRI scans. If I'd have been given a blindfold, or something over my eyes I would have been fine. Also, if I'd have been talked through the process I may have been more prepared. Surely this must happen a lot? Judging my the nurses complacent reaction, it probably does. Apparently I should have been sedated before hand. But who wants to feel groggy for two days just to go through a scan? Since coming home I just feel so silly about the whole thing. I mean, my common sense tells me I was in no danger whatsoever, but my phobia took over and I had no control over myself. It's scary. Now I just have to wait on the results.
This evening I had my MRI scan. Mum came to babysit the kids so that Dan could come with me. I wanted him in with me because I know I can be a little claustrophobic at times. Although, I've never been in a situation where I've been confined, so its hard to be sure if I am claustrophobic or not. So he came with me. I wasn't at all nervous. When I went to the reception the nurse said that Dan would have to wait in the waiting area. I asked if he could come and she said 'no'. Then I said that I was a little claustrophobic and would feel happier if he was there. So she agreed, but he would have to fill out forms and take any metals items off of him etc. She seemed a little annoyed at the extra paper work. I felt a bit of a con for asking for him to be there as I'm not really that claustrophobic.
I had to remove all my jewelry, my glasses, my metal under-wired bra! (I never even thought about it!) and answer lots of questions concerning metal and operations. Then she took us into this room. At this point I had no glasses on so I couldn't really see a thing. She said "pop up onto that bed there". Steve sat at the side of the room. I had said to Steve before hand "I will be OK as long as a) they don't strap my head in, b) I have at least an arms length of room or c) they only put my head into the machine and not my whole body. If they did 2 of the 3, but not all 3, I would be fine. So I lay on the bed. The nurse said "I'm just putting this aerial on your head". No problem. But this aerial was not an aerial, it was a metal head cage, like something off of Silence of the Lambs! It was strapped across my head and locked into position. My eyes peered out from the gaps. "I'm OK" I thought "I can cope with that". The nurse had already put some headphones on me with my favourite CD playing. Over the sound of music I just about heard her say "if you're claustrophobic you may want to close your eyes". This was the only information I was offered. I wasn't told what would happen, or anything more than this. No my mind, I should have been shown the machine, told how far I would go in and talked through the process.
I felt her put something in my hand. "This is the alarm. You can press this if you are in any distress". OK, lying very calmly in my head cage. Then I closed my eyes and felt the bed moving. I was fine. Eyes closed. Listening to my music. Been there for about 12 seconds, give or take. So I thought, "Hmm, I wonder what's happening. I'll take a look around". I opened my eyes. BIG MISTAKE. To my horror my entire body was caged in what I could only describe as a sterile white plastic coffin! The top of the tube/machine was only inches from my nose. My heart almost exploded with terror. At this point I realise I really am claustrophobic and all sense or reason disappeared. I tried to move my arms but couldn't stretch them. A, B and C had all happened to me and I lost the ability to stay calm. It was very unlike 'me'. I pressed the panic button. The nurse thought I'd pressed it my mistake. They I started shouting "get me out of here, please let me out" and as the panic raced through my body I was about to start kicking and breaking their equipment when I felt the bed moving out. Oh thank god. I was out. They took the brace off my head, I sat up and have never felt so utterly horrendous in my entire life! And my sensible head was telling me how daft I was being, but my body was having a panic attack.
I sat bolt upright. My mouth had gone completely dry, just instantly dry, it was so weird. My lips were tingling and my heart was pounding through my chest wall. I could hear the nurse saying "you opened your eyes didn't you". She started telling me that I had to go back in because the scan was important. She said that if I did it again once the machine was switched on (I hadn't yet got to that stage) that she would lose all the magnetic power and they wouldn't be able to do the scan. I really wanted to get the scan done so I lay back down quickly because if I'd had time to think about it I'd have run out of the building. She said Dan could stand at the machine and hold my feet to comfort me. They strapped my head in again, put the music on, and I shut my eyes as tight as I could. I clenched my fists round that alarm and tried to breath slowly. I really needed a paper bag. I felt the machine moving again and my heart was just pounding so hard. I couldn't breath normally. My lips were shaking. I've seen peoples lips and hands shake from fear but never experienced it. But now my lips were shaking uncontrollably, as were my hands. My eye lids were shaking up and down whilst my eyeballs were shaking from left to right! Honestly. It was so hard to keep them closed as they were flickering everywhere. And the whole time I was trying to tell myself how silly I was being.
I lay there, paralysed for about 20 minutes. I daren't move a muscle for fear that I would panic again. I could feel Dan rubbing my legs and feet, and tapping in time to the music on me. I tried to concentrate on the words to the songs. I took the Serene and Pearl CD 'Peace All Over Me' because the words are inspiring and create great images in my mind. I tried so hard to listen to the words and block out what was happening. But the machine was so noisy that I could barely hear the music. I did not open my eyes once. If I had opened them, I would have lost it completely. I just lay there, trying to breath. The noises were very loud. Metal clanking noises, bashing and crashing, and robotic noises too. After what seemed like an eternity I felt the bed moving. I didn't open my eyes till I felt the head cage go, just in case I'd got it wrong, and the bed wasn't moving at all, LOL.
The nurse said nothing but "you're free to go now". Whilst I tried to compose myself after the most horrific half an hour of my life. It took me about 2 hours to calm down. Even typing this I'm getting palpitations. Dan had to stop at a cafe on the way home and buy me a cup of tea and a lemon meringue pie.
I have learnt from this that I am extremely claustrophobic. I am sure measures should be taken for people like that having MRI scans. If I'd have been given a blindfold, or something over my eyes I would have been fine. Also, if I'd have been talked through the process I may have been more prepared. Surely this must happen a lot? Judging my the nurses complacent reaction, it probably does. Apparently I should have been sedated before hand. But who wants to feel groggy for two days just to go through a scan? Since coming home I just feel so silly about the whole thing. I mean, my common sense tells me I was in no danger whatsoever, but my phobia took over and I had no control over myself. It's scary. Now I just have to wait on the results.
Tuesday, 2 January 2007
My Ear Appointment
Finally, after many months of waiting, I went today to see the specialist about my hearing problem. He was apologetic about my referral going astray, but I guess it was more the fault of Royal Mail than of him. First of all I had a hearing test which was normal. However, the whooshing pulsatile tinnitus was very mild in my right ear today so it wasn't the best day to see him. On the days when it is very bad I can hardly hear the TV. But it's always the way when you go to the doctors eh? I explained all my symptoms to him. Told him that I start getting light headed and feel like fainting if I lie on my tummy or stretch above my head, and also told him that 3 people (Steve, Jude and Hannah) were able to hear the sound in my right ear by listening with their ear against mine. At this point he got rather excited. Apparently he has only come across that 3 times in his career (and he wasn't a young man). I did explain to him that the whooshing sounds in my ear were not bad today but he had a listen anyway and seemed rather disappointed at not being able to hear anything. I explained that sometimes it can be very loud for maybe two weeks, and then quiet for two weeks. I offered to take his phone number and I'd call him next time it was audible, if he was that keen to hear it, LOL.
Anyway, I tried my best to express that this sound really was audible to others at times and it wasn't in my imagination. Thankfully he believed me, even though it is very rare, and said I had explained my symptoms perfectly and they all fitted (fitted what? I'm not sure).
So then he told me that as we age we get a thickening of the arteries and this can cause noises in the ear. Um, yes, so I turn 30 and all of a sudden I'm old?! But then, considering my age it was rather unusual. Thank goodness for that. So he told me he was referring me for either an MRI scan or a CAT scan of my head and neck. Then he preceded to tell me that it's very rare indeed (just as the noises being audible to others is) but there is a slight possibility that there is an abnormality in the arteries of my neck and head, or possibly a tumour in the eardrum. Nice. But don't worry, he said, because it's very rare... but if others have heard the noise, well, we better be sure. So there you go. I wonder how long I will wait for the MRI/CT scan, and what that will entail. Hopefully the scan appointment will be on a day when the whooshing sounds are bad! lol.
Anyway, I tried my best to express that this sound really was audible to others at times and it wasn't in my imagination. Thankfully he believed me, even though it is very rare, and said I had explained my symptoms perfectly and they all fitted (fitted what? I'm not sure).
So then he told me that as we age we get a thickening of the arteries and this can cause noises in the ear. Um, yes, so I turn 30 and all of a sudden I'm old?! But then, considering my age it was rather unusual. Thank goodness for that. So he told me he was referring me for either an MRI scan or a CAT scan of my head and neck. Then he preceded to tell me that it's very rare indeed (just as the noises being audible to others is) but there is a slight possibility that there is an abnormality in the arteries of my neck and head, or possibly a tumour in the eardrum. Nice. But don't worry, he said, because it's very rare... but if others have heard the noise, well, we better be sure. So there you go. I wonder how long I will wait for the MRI/CT scan, and what that will entail. Hopefully the scan appointment will be on a day when the whooshing sounds are bad! lol.
Friday, 27 October 2006
More strange noises
I went to the doctors again, two weeks ago, about this pulsatile tinnitus. She was more concerned this time since I told her that the noise in my ears was getting worse, and was now audible to the outside world. In other words, if Steve puts his ear on my eat he can hear strange noises too. Therefore it is not 'all in my imagination'. Of course, when I was at the doctors the noise was not present, so she couldn't hear it, but she took my word for it.
I still have the constant whooshing sound of my heartbeat, which is present at all times in my right ear. If you remember in my last post I said that I was also getting new noises which would only last a minute or so. But now, this new noise, is present most of the time. This is the noise which can be heard by other people, if they listen to my ear. I know, it sounds bizarre. Jude also heard it, as did my sister Hannah, when they listened to my right ear. This noise is hard to explain. It's also beats in time to my heart beat, but instead of whooshing (the separate whooshing noise is still there) its more of a creaking humming sound. I was happy enough when it only happened on occasions, but now it is there almost constantly. Sometimes the creaking noise goes, but then it comes back suddenly, as if someone just turns on a switch. I thought the whooshing heartbeat noise was driving me insane. But now I've realised that it was quite a pleasant experience in comparison to this new noisy creaking carry-on. Sometimes its loud enough that I can't hear the TV or a conversation. Sometimes I catch myself turning my head to see where the noise is coming from.
So anyway, the doc was a little more concerned about these new noises. She looked at my eardrum. Last time it looked normal. This time it looked 'dull'. She asked if I'd had a cold recently, which I hadn't. Usually a dull ear drum is a sign of a bad sinusy type cold. At least she could see something this time. So she phoned the hospital to see what had happened to my referral. She had written my referral letter in May. Then she wrote a second referral on 1st October when I'd been to see her again, as she felt it was more urgent than before. The hospital claim they didn't receive either referral letter and had no idea that I was waiting for an appointment. This made me crazy! They agreed to give me the first available cancellation. That was two weeks ago, and I still haven't heard anything from them. The annoying thing is that I should have already been seen by now. I'm pretty sure the first appointment will tell me nothing, and will just be to decide whether I need to be seen by a specialist. So I want to get that appointment out of the way.
I'm tempted to pay to be seen privately. If I pay for the first appointment I can re-join the NHS list at the next stage and be treated sooner. But I loathe to pay out good money when I should have already been seen by now. I'll call the doctor again on Monday and get her to chase the hospital again. In the mean time, poor Steve is probably sick of my constant complaining, especially at night time when I long for peace and quiet. I think I might go completely mental. Judging by the number of people who have reached my blog by googling 'pulsatile tinnitus', I am not alone.
I still have the constant whooshing sound of my heartbeat, which is present at all times in my right ear. If you remember in my last post I said that I was also getting new noises which would only last a minute or so. But now, this new noise, is present most of the time. This is the noise which can be heard by other people, if they listen to my ear. I know, it sounds bizarre. Jude also heard it, as did my sister Hannah, when they listened to my right ear. This noise is hard to explain. It's also beats in time to my heart beat, but instead of whooshing (the separate whooshing noise is still there) its more of a creaking humming sound. I was happy enough when it only happened on occasions, but now it is there almost constantly. Sometimes the creaking noise goes, but then it comes back suddenly, as if someone just turns on a switch. I thought the whooshing heartbeat noise was driving me insane. But now I've realised that it was quite a pleasant experience in comparison to this new noisy creaking carry-on. Sometimes its loud enough that I can't hear the TV or a conversation. Sometimes I catch myself turning my head to see where the noise is coming from.
So anyway, the doc was a little more concerned about these new noises. She looked at my eardrum. Last time it looked normal. This time it looked 'dull'. She asked if I'd had a cold recently, which I hadn't. Usually a dull ear drum is a sign of a bad sinusy type cold. At least she could see something this time. So she phoned the hospital to see what had happened to my referral. She had written my referral letter in May. Then she wrote a second referral on 1st October when I'd been to see her again, as she felt it was more urgent than before. The hospital claim they didn't receive either referral letter and had no idea that I was waiting for an appointment. This made me crazy! They agreed to give me the first available cancellation. That was two weeks ago, and I still haven't heard anything from them. The annoying thing is that I should have already been seen by now. I'm pretty sure the first appointment will tell me nothing, and will just be to decide whether I need to be seen by a specialist. So I want to get that appointment out of the way.
I'm tempted to pay to be seen privately. If I pay for the first appointment I can re-join the NHS list at the next stage and be treated sooner. But I loathe to pay out good money when I should have already been seen by now. I'll call the doctor again on Monday and get her to chase the hospital again. In the mean time, poor Steve is probably sick of my constant complaining, especially at night time when I long for peace and quiet. I think I might go completely mental. Judging by the number of people who have reached my blog by googling 'pulsatile tinnitus', I am not alone.
Monday, 2 October 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.
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.
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