need some support!

[NancyNanez]

Hey all. My name is Ashlie and I'm 30 years old. I have dealt with pulsatile tinnitus on and off for a few years in my right ear. It has always come and gone or when it has stayed it has been very soft. For the last week it has been non stop and pretty loud. Last night I pretty much lost it. It is driving me quite insane. How do people live like this without killing themselves? I have been to my ENT about it before and they did an MRI and couldn't find anything wrong with me in relation to the tinnitus I experience. What is the next step?
I have had pretty bad ear infections my entire life and was diagnosed with eustachian tube dysfunction and at age 18 I got some tubes in my ears. Now, I have holes in my eardrums due to the tubes. I am wondering if this has anything to do with this. I just got a sound machine today to help me sleep. Last night was horrendous. The fan I use didn't work one bit. I feel so alone and don't know how I will deal with this. Any help, advice, and support would be greatly appreciated. I'm so glad I found this site today!!!

 

[calin]

Welcome Ashlie!! So glad you found this site and joined in.

Lovely picture!

As you read through the threads here you will find lots of similar feelings. You are NOT alone!

I have pulsitile tinnitus as well. All tests (brain MRI, VNG, ENT doc, ear wax removal, carotid artery ultrasound, hearing - audiology, etc.) came out clear and in a healthy normal state.

Look around and get the feel. Join in on threads. That is the best way to get support and have your questions addressed.

My PT is a one ear mostly thing - my left. I went from a 10 (high) to now mostly a 1-2 to 0 noise level. A minute ago it was 0. When I pay attention to it there is a very slight increase in volume.

Karen on this site has PT as well. She is a good source to chat with as well. You will like her! She is very supportive and caring. Actually, you will find friends as most here are very caring. You'll see!

Sound machine! good ! Hope it helps!

 

[NancyNanez]

Thanks Calin for your warm message and quick response!

What exactly have you done to help your tinnitus? The first thing I have done is make an appt with my ENT again and also my regular doctor. I have been using essential oils, but haven't helped yet and yeah, the sound machine. We will see how it goes tonight. What would you say is the next step in testing? I just don't really know where to go from here!!! Thanks again SOOO MUCH for your time!!!

Ashlie

 

[aurelientt]

Hi Ashli, my T noise started just a couple of weeks ago. In the first few days I had severe panic attacks due to it, especially upon waking in the morning. But today was the first day where I woke up and did not feel seriously depressed. I use white noise to help sleep and am taking an anti-depressant and Vitamin D to deal with the anxiety that has accompanied my T. I also have made far heavier use of entertainment in order to fight my tendency to "check-in" on the level of the T. I am not a dog person but my roommate's pups and the TV show "Frasier" have given me the much needed laughter and comfort. And I whenever I get really low, I call or text my family and focus on what's going on with them.

Please stay strong and if you want to chat on here or talk on the phone I am more than happy to do so!

 

[calin]

Thanks Calin for your warm message and quick response!

What exactly have you done to help your tinnitus? The first thing I have done is make an appt with my ENT again and also my regular doctor. I have been using essential oils, but haven't helped yet and yeah, the sound machine. We will see how it goes tonight. What would you say is the next step in testing? I just don't really know where to go from here!!! Thanks again SOOO MUCH for your time!!!

Ashlie

My pleasure.

I have been to the ENT who had me do a brain MRI (which I asked for the DVD copy of - it's cool!), a carotid artery ultrasound ( which I have a DVD copy of too! ), he removed small bits of ear wax (didn't change anything), take a bazillion supplements, do other alternative things like meditation, take my attention away, listen to rain/thunder cd on replay to sleep well, and other things I can't think of right now I am sure.

With PT, the ENTs seem to think the pulsing is due to an artery blockage ... things like that. We hear the pulsing in relation to the heartbeat, which is circulatory issues. I have no blockages or even a hint of one on my tests.

Essential oils? Nebulizing?

Come back and tell us about what the ENT says.

 

[calin]

Hi Ashli, my T noise started just a couple of weeks ago. In the first few days I had severe panic attacks due to it, especially upon waking in the morning. But today was the first day where I woke up and did not feel seriously depressed. I use white noise to help sleep and am taking an anti-depressant and Vitamin D to deal with the anxiety that has accompanied my T. I also have made far heavier use of entertainment in order to fight my tendency to "check-in" on the level of the T. I am not a dog person but my roommate's pups and the TV show "Frasier" have given me the much needed laughter and comfort. And I whenever I get really low, I call or text my family and focus on what's going on with them.

Please stay strong and if you want to chat on here or talk on the phone I am more than happy to do so!

I do like your spirit! I am so glad you joined and shared with us!

 

[NancyNanez]

My pleasure.

I have been to the ENT who had me do a brain MRI (which I asked for the DVD copy of - it's cool!), a carotid artery ultrasound ( which I have a DVD copy of too! ), he removed small bits of ear wax (didn't change anything), take a bazillion supplements, do other alternative things like meditation, take my attention away, listen to rain/thunder cd on replay to sleep well, and other things I can't think of right now I am sure.

With PT, the ENTs seem to think the pulsing is due to an artery blockage ... things like that. We hear the pulsing in relation to the heartbeat, which is circulatory issues. I have no blockages or even a hint of one on my tests.

Essential oils? Nebulizing?

Come back and tell us about what the ENT says.

I use DoTerra essential oils for random things. I use OnGuard, their wellness blend in hopes it will help me. I use a nebulizer whenever I can, especially when I am going to sleep. I also use Lavender and other soothing oils to help me destress, and then I use Helichrysum (specifically for tinnitus) around my ear and in the canal. It hasn't seemed to help. I will let you know what he says!!! Thanks again!!

 

[NancyNanez]

Hi Ashli, my T noise started just a couple of weeks ago. In the first few days I had severe panic attacks due to it, especially upon waking in the morning. But today was the first day where I woke up and did not feel seriously depressed. I use white noise to help sleep and am taking an anti-depressant and Vitamin D to deal with the anxiety that has accompanied my T. I also have made far heavier use of entertainment in order to fight my tendency to "check-in" on the level of the T. I am not a dog person but my roommate's pups and the TV show "Frasier" have given me the much needed laughter and comfort. And I whenever I get really low, I call or text my family and focus on what's going on with them.

Please stay strong and if you want to chat on here or talk on the phone I am more than happy to do so!

I see we are both newbies to this whole fiasco called tinnitus. I find that I am constantly wanting noise around me, whether music or television and I prefer talking on the phone or being in louder situation so I don't hear it (not too loud, like a concert or anything). Thanks for sharing what helps you. It REALLY helps to know I'm not alone in this. Seriously. Good to 'meet' you!

 

[erik]

Nancy there are great members on this board, many with Pulsatile T....maybe Karen will chime in

 

[calin]

I use DoTerra essential oils for random things. I use OnGuard, their wellness blend in hopes it will help me. I use a nebulizer whenever I can, especially when I am going to sleep. I also use Lavender and other soothing oils to help me destress, and then I use Helichrysum (specifically for tinnitus) around my ear and in the canal. It hasn't seemed to help. I will let you know what he says!!! Thanks again!!

Helichrysum (specifically for tinnitus)... OH! That is new to me! thank you.

 

[Jardojo]

I recall reading that perforated eardrums, sounds like you have it bilaterally, can cause or increase T. Didnt the ENT doctor recommend a tympanoplasty to repair the holes in your eardrums?

 

[NancyNanez]

I recall reading that perforated eardrums, sounds like you have it bilaterally, can cause or increase T. Didnt the ENT doctor recommend a tympanoplasty to repair the holes in your eardrums?

I will talk to him about that next week when I see him. He has mentioned it, but didn't push it or think it was necessary quite yet. Maybe it's time!!! If I would have known this is what would happen from getting tubes in my ears, I would have never done it!!!

 

[NancyNanez]

Helichrysum (specifically for tinnitus)... OH! That is new to me! thank you.

Whoops I don't use a nebulizer, I use a mister dealie thingie=)

 

[Karen]

Hi, Ashli, and welcome! I'm so sorry to hear about what you're going through. Living with pulsatile tinnitus isn't easy, that's for sure. All of these nice people have given you some very good suggestions, and I'm really glad you're going back to your ENT. I agree with the others that you may be having problems because of the perforations in your eardrums.

Please do update us on what your ENT says after that appointment. I'll send you a private message and we can discuss further. Please stay strong; we're here to support one another, and we're glad you joined us!!

 

[Jardojo]

I will talk to him about that next week when I see him. He has mentioned it, but didn't push it or think it was necessary quite yet. Maybe it's time!!! If I would have known this is what would happen from getting tubes in my ears, I would have never done it!!!

Punctured eardrums will usually heal on their own but sometimes (depending on location or size) they dont heal and they need to be repaired. I would definitely have that repaired! If anything, you run a high risk of getting middle ear infections if you dont have the procedure done. You also have to worry about getting water in your ear. Hope they can help you!

 

[Markku]

I agree with Jardojo. I would myself get the holes fixed. I don't expect it could cause a worsening of your tinnitus, but there's of course no guarantees with the mystic condition this is.

However, do ask your ENT whether he thinks they would heal on their own, as that would be the perfect situation. I guess he thinks the holes might heal in natural course if he wanted to wait it out.

Well, you'll learn more next week you see him.

Best of wishes and I also just wanted to say hi for joining our little community, welcome!

 

[Fish]

Welcome to TT!

This might be a silly question to ask - but are those tubes in eardrums a lifelong solution? Doesn't it expose your ear and make it more prone to external agents like dust, excessive noise etc.?

By the way - I had my own eardrums punctured two times (long story..) and they healed up very quickly. My doctor told me that healthy eardrums generally close up within 24 hours.

Also, you mentioned your PT coming and going on many occasions. Can you recall anything that would "trigger" it or make it go away? Were you doing something like physical exercise or were you in stressful situations every time PT appeared? And final question - do you have only PT without regular tinnitus?

 

[topaz]

I wonder if niacin (vit. b3) or gingko biloba would help. They both increase blood flow to the brain and have been recommended for tinnitus.

 

[NancyNanez]

Punctured eardrums will usually heal on their own but sometimes (depending on location or size) they dont heal and they need to be repaired. I would definitely have that repaired! If anything, you run a high risk of getting middle ear infections if you dont have the procedure done. You also have to worry about getting water in your ear. Hope they can help you!

Thanks for bringing this to my attention. I will most definitely be bringing this up on Tuesday. I am so thankful I found this forum. I have learned so much just from looking at people's posts.

 

[NancyNanez]

I wonder if niacin (vit. b3) or gingko biloba would help. They both increase blood flow to the brain and have been recommended for tinnitus.

Hey Topaz. I'm going to check both of those out asap. Thanks so much for the recommend!!!!

 

[NancyNanez]

Welcome to TT!

This might be a silly question to ask - but are those tubes in eardrums a lifelong solution? Doesn't it expose your ear and make it more prone to external agents like dust, excessive noise etc.?

By the way - I had my own eardrums punctured two times (long story..) and they healed up very quickly. My doctor told me that healthy eardrums generally close up within 24 hours.

Also, you mentioned your PT coming and going on many occasions. Can you recall anything that would "trigger" it or make it go away? Were you doing something like physical exercise or were you in stressful situations every time PT appeared? And final question - do you have only PT without regular tinnitus?

You know, when I got the tubes I was just following my mom's lead. I was pretty young when all my beginnings of ear drama started. I am not sure if the tubes were supposed to be a lifelong solution. I know I've had less infections since I've had them, but I still get some (a few a year). I hope they heal on their own, but I don't think they will. I think that's why he has recommended the surgery to close them. I will ask if he thinks closing them will help the T or not. I never really paid attention when I started getting the PT, as to what triggered it. I didn't even know it was a form of tinnitus until a few days ago. I think allergies maybe trigger them? Is that normal? Also, ear infections. I thought I had an infection and my normal doc looked today and said there was some wax but no infection he could see. We will see what the ENT has to say Tues. I do not have regular T, just the PT in the right ear! Thanks for responding to my post!!!! I appreciate you!!!

 

[NancyNanez]

I agree with Jardojo. I would myself get the holes fixed. I don't expect it could cause a worsening of your tinnitus, but there's of course no guarantees with the mystic condition this is.

However, do ask your ENT whether he thinks they would heal on their own, as that would be the perfect situation. I guess he thinks the holes might heal in natural course if he wanted to wait it out.

Well, you'll learn more next week you see him.

Best of wishes and I also just wanted to say hi for joining our little community, welcome!

Good to 'meet' you Markku!!!! I will update as soon as I see the ENT Tuesday! I have a feeling they arent going to close on their own. =(

 

[Jardojo]

Eardrums that dont close within 2 months generally need to be repaired, anything longer than that and you really need it done.

 

[Roger Cloutier]

Eardrums that dont close within 2 months generally need to be repaired, anything longer than that and you really need it done.

Hi Ashli, I've been living with PT for nearly 2 years as well. It's a hard question to answer re: how do we survive, well firstly we do it by belonging to this forum and finding other supports close by or where we live. Do you have a Tinnitus support group in your city? As for my anxiety, and panic attacks, which I still get, I have a psychiatrist who prescribed anti-depressants for me. The confusing thing about tinnitus as you have probably already noticed is that it is different for everyone, what works for me might not work for you, especially the anti-depressants, at least they did work for a while ! All I can say is that you are not alone. Lately I have been interested in the concept of ''Mindfulness'' and learning how to cope with and manage my tinnitus. I think I discovered a strategy on my own, namely, find something that helps distract you away from focusing on your tinnitus all the time. This is part of the solution, of course as a matter of fact, just being engaged in this forum, has helped me through an evening where I wasn't doing so good, and decided to seek out tinnitustalk for some support.
In finnishing, I recall reading in ''Whoosher's'' support group about someone who had a problem similar to yours, and they were cured once their ear drum was repaired.

Roger, whoosher from Canada