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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Hi Bree,
ReplyDeleteI have been searching for a tinnitus support or forum for a while since I contracted tinnitus 2 years ago. Recently, in May 2007, I lost my hearing on my left side and the ringing got real loud. I live in Singapore and there isnt a tinnitus association here. Take care and God Bless.
Bizzz
http://tinnitusspeciliast.blogspot.com/
It's so great to hear others describe their symptoms. Unfortunately, Western Medicine Doctors have NO cure and NO clue how disruptive this is! I too started with my Internist, who prescribed Sudafed! Well of course that did nothing so I went to an ENT. He ordered an MRI but when the results did not show anything...are you ready for this solution???? He said 'get a fan, a noisy fan' oh yeah, and should I strap that fan to my hip at work? This was my first clue that there doesn't seem to be a solution!
ReplyDeleteI'm wondering if there is any Eastern Medicine solutions? Acupuncture in and around the ear? Something! I too feel like getting a ball ping hammer to my ear!
Thank you for this blog at least!
I have had pulsatile tinnitus for 6 years now. I have seen every doctor and had every test done. MRI/MRA both came back with nothing. I am scheduled for a cerebral angiography to look at the vessels in the head and neck. I guess they are looking for possible AVM/aneurysms. THe noise is annoying and the right side of my head hurts, and a feel nauseous. I just hope that I can finally get some answers.
ReplyDeleteok, five years later: still no answers. The angiogram showed nothing. I have since gone to a neuro-opthamologist. She is at the University of Houston. She mentioned PTC psuedotumor cerebri or indeopathic intracrannial hypertension. I have to go get an ultrasound of my eye nerves to check for swelling. EEK! afterthat, a lumbar puncture or spinal tap. :( Still have the pain in my neck, headaches, nausea, and whooshing noise in my head. I can't believe this has lasted eleven years!
DeleteThat sounds exactly the same as my symptoms. My neck scan showed I have a kink in the main artery to my head which they say causes the noise. But they always tell me the headaches, neck pain, nausea etc has nothing to do with tinitus. I dont beleive them as so many people have the same symptoms. It seems we just have to live with it.
ReplyDeleteThere’s a free e-book you can download.
ReplyDeleteIt answers a lot of questions.
http://www.lulu.com/content/5794814
I cant believe there are so many sufferers, i was woken about 8 weeks ago with an exceptionally loud wooshing noise in my ear/head that seemed to be in time with my pulse. my doctor said it was fluid behind the ear. Well guess what 6 courses of antibiotics later and the wooshing is still there, aminly when I lay down or bend over. i have just had a scan done of the carotid artery and a scan of my sinuses I am just waiting for the results, its bloody scaring the hell out of me
ReplyDeleteHi - I have recently developed the pulsatile tinnitus and it is now almost constant - glad to find this page. Does anyone else look down at a computer every day as i thought it might have started due to bad posture looking down at a laptop ??? Any feedback would be gratefully received.
ReplyDeleteMy cousin just started with ringing in the ears, possibly having tinnitus. Since I do a lot of internet research, she asked me to get her some information. While searching, I came across this very informative blog and thought you might be interested. Hope this helps.
ReplyDeleteAlan
http://www.tinnitus-relief.com
I had a very bad cold about 4 weeks ago and seem to have had the pulsing noise in my head for the last two or three weeks. It is worse at night, but even then it comes and goes for no obvious reason. Changing my position can alleviate it.
ReplyDeleteI use a computer and a laptop, and have had other posture related problems in the past. I suffer from headaches, nausea and dizziness too, Stematil relieves the dizziness.
I have a spell of vertigo in June and then the ringing started. It has now progressed to pulsing; i have had an mri, ent workup and one more test to do....doesn't sound like anyone has found a solution yet.
ReplyDeleteI am also trying cranial sacral therapy and accupressure. If it helps I will post.
Hang it there everyone....we need each one's support of the other, don't give up
mc
I hope these people who stated that they have pulsatile tinnitus have consulted on time to neuro-radiology surgeon before they had a stroke. It is very important that they be seem by the neuro-ratiology surgeon because this condition is very dangeous. The cause, that I know of, is that in the head, veins and arteries are communicating (holes in between) and blood is rushing in every which way and not from arteries to capillaries and back through the vein to heart. I had a pulsatile tinnitus also and the noise was so loud that I had to ask ENT specialist what specialty doctor I should be consulting. He said for me to go and see the vascular surgeon. The vascular surgeon, after testing told me that I should go and see the neuro-radiology surgeon. I happened to have found a good neuro-radiology surgeon who is experienced with this type of surgery and had two surgery to correct the condition. He said that I had a mess--the veins and arteries in my head was connected in numerous places. He injected, through the catheter from the groin area, onyx to plug the connections here and there. I hope this story helps some people to know that they need to consult the right doctor very quickly.
ReplyDeleteThanks for telling us your success story. Can you please tell us where you are located and the name of the surgeon you saw. I need help too! It's been pounding in my right ear for about a year now!!
DeleteI have had the same issues as you and get very little sleep, even with sleeping pills. My neurologist sent me for an MRI/MRA then eferred me to an ENT. He heard the pulsing and refered me to a Neurosurgeon who did a CT with dye contrast. He didn't seem alarmed and suggested I have the angio catheter (through gron area), but told me he doubted he would find anything wrong and even if he did, there was only a 50% chance it would stop the pulsating noise. Since the next steps were more invasive and higher risk without much reward, I decided to pass them up. I take 30 mg. temazapam to help me get 5-6 hrs. sleep or I'd be trying to end my life by now.
DeleteI live in Florida and would like to know who was the neuro-radiology surgeon who helped you and where is he located? Thanks so much!
I have had pulsatile tinnitus for 10 months. After going to several ENT doctors the last one diagnosed it as a benign venus hum ...sometimes the pulsatile tinnitus is
ReplyDeletein one ear and then it stops and I hear a continuous ring and then it goes to the other ear.
I use ambien otherwise I would never sleep and also zoloft for its anti fixation properties.(don't dwell or worry about the ring)...both have keep me functional.
I am a 64 yr old male. Sometimes it is so low, I really can't hear it but feel the pulsing, but some pulsating ring is usually there...sometimes very loud.
My ENT said there is no cure for it. There is a support group here in New York at the NYU Medical Center that meets twice a year.
A website is maintained called whoosers.com. They are in the forefront of finding medical cures for this curse.
The two drugs mentioned have helped me a great deal to the point where I don't have to use a sound machine. The drugs only help me sleep and not freak out but
do nothing for the ring. Background noise, keeping busy and talking will greatly help not hearing it, sometimes to the point I think I am cured but then at night or in
quiet it becomes evident it is still there...
there is great information from other "whooshers" with pulsatile tinnitus on www.whooshers.com , also on facebook there's a group if you look up pusatile tinnitus x
ReplyDeleteI have had the pulsating tinnitus in my right ear for about 12months, the Dr told me I only thought I could hear it. I had a scan of my arteries and CT scan of my neck. nothing there to cause it. Went to a E.N.T specialist and told it was coming from OTOSCLEROSIS in my ear. Was going to have a STAPEDECTOMY done on my ears but decided the risk of going totally deaf was not worth it. I got a hearing aid and it helps through the day but at night, I have to use a Walkman which helps a lot. It drives me mad at times, but the Surgeon said not life threatening as it is also coming from my Cervical Spondylosis in my neck.
ReplyDeleteWill keep hanging in there.
ANONYMOUS. Australia.
Hi, I have pulsatile tinnitus for 2 months now and was waiting to see another ENT soon for a second opinion. I have what you have, otosclerosis and had a stapedectomy done in 1986 on the left ear. I have it in the right ear too and hearing is getting worse. This is the first time I read about the cervical spondylosis connection. I have cervical spondylosis too. I have been encouraged to go for a stapedectomy for the right ear but the ENT who did it for me told me that by doing it I have the risk of losing my hearing. That is why I have not had it done all these years. At least now I know someone else with the same problem. Yes, we will just keep hanging in there.
DeleteHi I am 55 and have pulsatile tinnitus since July and had seen two ENT. I have otosclerosis and a stapedectomy done in 1986 on my left ear just like you. I have it in my right ear too and after being diagnosed with pulsatile tinnitus the ENT surgeon recommended a stapedectomy to be done but I am not doing it as the surgeon who did the 1986 operation told me that if I do it in the other ear it will not turn out well. I have cervical spondylosis too. I went to the Chinese traditional medicine physician to seek treatment for the pulsatile tinnitus and was told it comes from the cervical spondylosis and I was quite of skeptical as none of my doctors mention it. So now I heard about it.
Deletei had a ear infection last month and with it got a pulsing noise in my head.the infection went but the pulsating is still there.its a bit better now.i used to hear it non stop but now its only when i lie down and it makes sleeping very hard.i got a MRI and CT scan next month and im extremely scared.
ReplyDelete