Losing My Mind

[Susan Lee]

Good morning all,

Hope I am posting this in the right place!? Has anyone been told they have Pulsatile tinnitus and the cause is of a pocket of cerebral spinal fluid in your jugular vein? a few Doctors and specialists I have seen don't see anything- don't know what to do for me. I've had an MRI, MRA, MRV and a CT scan. My neurologist who has been treating me for migraines for the past year saw the scans and thought possibly a cyst. the specialist he referred me to cant see me till end of January. the 2nd opinion of an ENT had a 2nd opinion and this radiologist said diverticulum of CSF in the jugular and is not aware of any treatment for this condition without neurological damage. I am 30 years old - HAD a pretty active life until this and it's steady getting worse. I feel more pressure on the right side and the noise gets worse. its in sync with my heartbeat, I had to stop exercising the more my heart rate goes up the worse i feel and the louder the noise gets, and it gets painful. I cant concentrate or focus on anything, reading is becoming impossible. I don't enjoy things I love doing. i just want to sleep and sometimes i find myself fighting to get to sleep. I have 2 beautiful smart children a loving supporting husband that need me and I feel lost. I am fighting anxiety, I feel depressed because of my ear. when I press on my neck where my jugular vein is the noise and pressure eases some, doesn't go away, the last Doctor i went to the harder he pressed on my neck it hurt but the noise seemed as it went away as soon as he let go felt like a firecracker and pounded again. just wondering if since i have a leak of csf can it keep leaking, can it clog my jugular vein, can it become meningitis? i did a little research on spinal fluid and i know what its for but doesn't sound like it's ''OK'' to just leave this pocket of fluid there. I have so many questions and concerns and no one seems concerned. I am scared and don't know what to do. I have tried masking the noise but doesn't help the pressure any. I cant walk around the rest of my life holding on to my neck.

Thanks,
Susan

 

[noisebox]

Golly Susan, I wish I could help. I have heard of people having success with PT with blood pressure medication. But I don't know anything about a cyst being a cause.
I feel for you though as which ever way we look at it it is a terrible condition that seriously ruins your life.

 

[Susan Lee]

Hi noisebox,

my neurologist put me on something for bp but my bp is fine and it brought it down to low, even on a really low dose. another doctor is trying to help mask other symptoms depression, anxiety, so he gave me something for anxiety and to help me sleep. besides my ear i am not depressed so dont want anything for depression. my family has a long line of depression and i think i fight that pretty good lol
yes this is defiantly ruining my life, as much as i try to fight it, its overcoming. i have done some research and everthing i have found i have tried to try. i actually had this about 5 years ago but it was a faint thumping noise and after a couple months it went away with doctors telling me basically i am crazy or trying to treat me for ear infections that i didnt have. but it came back and is only getting strong and worse.

 

[Karen]

Hi, Susan,

I'm so sorry you're having this problem, and can't find any definite solutions. I have pulsatile tinnitus, too, so I know what you must be going through right now. I've had the same tests you've had, and a cause hasn't been found. Mine, however, has not gotten any worse, and in fact, it seems a bit calmer than when it began five years ago.

In your case, I'd say that if your current doctors are not able to identify anything specific that can be done, you could consider seeking out another opinion. Maybe a spinal cord specialist would be able to help you.

I found this information on CSF leaks from the Cleveland Clinic:
http://my.clevelandclinic.org/services/head-neck/diseases-conditions/cerebrospinal-fluid-leak

It may be a treatable condition; the key is in finding the right doctor.

I've heard of a number of people with pulsatile tinnitus who have benign intracranial hypertension, and they often recommend a lumbar puncture for that particular condition. Perhaps a doctor who treats that condition could help you.

Another suggestion: You could check out Whooshers.com, if you haven't already done so. It is a website for people with PT, and there are a lot of success stories there, of people with PT who have been diagnosed and cured.

I wish you well, and hope you are able to find a doctor who will listen and be able to help.

Best wishes,
Karen

 

[Susan Lee]

Good morning Karen,

I have been reading a lot of your replies to a lot of peoples posts, I first want to say Thank you for listening to so many and giving advice and trying to help without diagnosing your a sweet person.
I have found whooshers and am following, I also emailed Dr. Maksim Shapiro, he sounds like a great man who knows what he's doing. I actually just got a response from him and will get back to him as I live in OK. I am going to find a way to send him a copy of my scans (not savvy with technology) I will defiantly look into the spinal cord spec. I am open for any suggestions and wont rule anything out till I try it. I am to stubborn to be told it's to dangerous to operate on me, I am miserable and cant live like this. I appreciate you responding to me and offering tips. i will check out this site.
Glad to hear your's has settled.

Take care,
Susan

 

[Drecul]

Hi Susan,

Sorry to hear you are suffering so much. I use EFT for my depression and anxiety which really helped me a lot.
Just Google it and there will be a ton of youtube movies explaining how it works and has to be done.
It is very simple and you can do it athome, takes 10 min. I use it on anything, any ailment wether metally or physically (it's all connected) Hope you find some peace.

 

[Susan Lee]

Hi Drecul,

Thank you and i will check into!

 

[Danny Boy]

Hi Susan,

Sorry to hear you are suffering so much. I use EFT for my depression and anxiety which really helped me a lot.
Just Google it and there will be a ton of youtube movies explaining how it works and has to be done.
It is very simple and you can do it athome, takes 10 min. I use it on anything, any ailment wether metally or physically (it's all connected) Hope you find some peace.

"EFT has no benefit as a therapy beyond the placebo effect or any known-effective psychological techniques that may be provided in addition to the purported "energy" technique.[3] It is generally characterized as pseudoscience and has not garnered significant support in clinical psychology."

 

[Danny Boy]

Good morning all,

Hope I am posting this in the right place!? Has anyone been told they have Pulsatile tinnitus and the cause is of a pocket of cerebral spinal fluid in your jugular vein? a few Doctors and specialists I have seen don't see anything- don't know what to do for me. I've had an MRI, MRA, MRV and a CT scan.

My neurologist who has been treating me for migraines for the past year saw the scans and thought possibly a cyst. the specialist he referred me to cant see me till end of January.

The 2nd opinion of an ENT had a 2nd opinion and this radiologist said diverticulum of CSF in the jugular and is not aware of any treatment for this condition without neurological damage.

I am 30 years old - HAD a pretty active life until this and it's steady getting worse. I feel more pressure on the right side and the noise gets worse. its in sync with my heartbeat, I had to stop exercising the more my heart rate goes up the worse i feel and the louder the noise gets, and it gets painful. I cant concentrate or focus on anything, reading is becoming impossible.

I don't enjoy things I love doing. I just want to sleep and sometimes I find myself fighting to get to sleep. I have 2 beautiful smart children a loving supporting husband that need me and I feel lost. I am fighting anxiety, I feel depressed because of my ear.

When I press on my neck where my jugular vein is the noise and pressure eases some, doesn't go away, the last Doctor i went to the harder he pressed on my neck it hurt but the noise seemed as it went away as soon as he let go felt like a firecracker and pounded again.

Just wondering if since i have a leak of csf can it keep leaking, can it clog my jugular vein, can it become meningitis? i did a little research on spinal fluid and i know what its for but doesn't sound like it's ''OK'' to just leave this pocket of fluid there.

I have so many questions and concerns and no one seems concerned. I am scared and don't know what to do. I have tried masking the noise but doesn't help the pressure any. I cant walk around the rest of my life holding on to my neck.

Thanks,
Susan

That's better. It's hard to read when you don't paragraph. I'm not trying to patronise, just that it's hard to read when you don't.

Good morning all,

Hope I am posting this in the right place!? Has anyone been told they have Pulsatile tinnitus and the cause is of a pocket of cerebral spinal fluid in your jugular vein? a few Doctors and specialists I have seen don't see anything- don't know what to do for me. I've had an MRI, MRA, MRV and a CT scan.

My neurologist who has been treating me for migraines for the past year saw the scans and thought possibly a cyst. the specialist he referred me to cant see me till end of January.

The 2nd opinion of an ENT had a 2nd opinion and this radiologist said diverticulum of CSF in the jugular and is not aware of any treatment for this condition without neurological damage.

I am 30 years old - HAD a pretty active life until this and it's steady getting worse. I feel more pressure on the right side and the noise gets worse. its in sync with my heartbeat, I had to stop exercising the more my heart rate goes up the worse i feel and the louder the noise gets, and it gets painful. I cant concentrate or focus on anything, reading is becoming impossible.

I don't enjoy things I love doing. I just want to sleep and sometimes I find myself fighting to get to sleep. I have 2 beautiful smart children a loving supporting husband that need me and I feel lost. I am fighting anxiety, I feel depressed because of my ear.

When I press on my neck where my jugular vein is the noise and pressure eases some, doesn't go away, the last Doctor i went to the harder he pressed on my neck it hurt but the noise seemed as it went away as soon as he let go felt like a firecracker and pounded again.

Just wondering if since i have a leak of csf can it keep leaking, can it clog my jugular vein, can it become meningitis? i did a little research on spinal fluid and i know what its for but doesn't sound like it's ''OK'' to just leave this pocket of fluid there.

I have so many questions and concerns and no one seems concerned. I am scared and don't know what to do. I have tried masking the noise but doesn't help the pressure any. I cant walk around the rest of my life holding on to my neck.

Thanks,
Susan

 

[Drecul]

"EFT has no benefit as a therapy beyond the placebo effect or any known-effective psychological techniques that may be provided in addition to the purported "energy" technique.[3] It is generally characterized as pseudoscience and has not garnered significant support in clinical psychology."

Good to know that I'll tell all the people I've done EFT on and lost their phobia's , pain, emotional distress etc it was merely an illusion. Bugger so my depression is not gone afterall.

 

[Danny Boy]

Good to know that I'll tell all the people I've done EFT on and lost their phobia's , pain, emotional distress etc it was merely an illusion. Bugger so my depression is not gone afterall.

Hey, don't shoot the messenger lol

 

[Drecul]

Hey, don't shoot the messenger lol

Well to late my anger management was fake.

 

[Danny Boy]

Well to late my anger management was fake.

LOL!

 

[Aaron123]

Susan,

Hi. Where are you located?

 

[Susan Lee]

Danny Boy, i did not come on here for someone to correct my typing! i thought this was a place to talk to other people with same problems, pain! you say you aren't trying to patronize anyone but you had to correct me and had to put someone else down for giving what may or may not be of any help to SOMEONE ELSE. we are NOT all perfect and quite frankly my typing it the last of my worries on a day to day bases, if you cant read it or get lost reading it then please don't read it. i think it's pretty rude what you did but hey i didnt paragraph so who am i to say anything. but to the point of this site I hope your PT is under control or you have gotten RELIEF!
Take care
Susan
oh i ran it all together, again. oh and didnt capitalize much.

 

[Susan Lee]

Aaron123,

Hi I am in Oklahoma. you?

 

[Gina A]

Hi Susan/All,

I've had Tinnitus since I was 12 and like many of you have been to multiple doctors for numerous different texts, exams, etc and nothing really has helped. As of last year, 2014, I had lost over 75% of my hearing in my left ear and the buzzing just kept getting louder and louder.

I've done just about any natural remedy that is out there and nothing really seem to help. Acupuncture seem to only make it worse.

I was going crazy and getting really depressed. Its also really hard to explain to others because they don't get it. They look at you crazy when you get all moody and depressed. Anybody feeling that way too?

I have recently started a new natural product that seems to be doing something but the noise is still there, I'll keep you posted if I see any big change as I know what is like to live with a crazy noise that won't leave you alone.

I tried the neck pressure thing but it didn't do anything for me.

 

[Sgguy46]

@Gina A what natural product? Thanks

 

[Gina A]

@Sgguy46 my mom who has Arthritis started taking this product and it helped her....a few other of her friends with other medical issues are taking it and its helping so I said, what do I have to lose? I have noticed that it has been helping me with my mood and depression...I've only been taking it for about a month now. The product is called Immunocal. I'm not an expert on it, but know people that are taking it and its helping them so I'm giving it a try as I have tried many other things and nothing so far has seem to work.

My understanding is that it helps with the our immune system and Glutathione, which helps heal different parts of our bodies. I'm doing more research on it as I'm taking it.

I can keep you posted on my progress...

 

[Karen]

Hi, @Susan Lee,

I just saw your response to my post, and I wish you well. Yes, I've heard very good things about Dr. Shapiro, and I hope that when you send him your scans, he is able to find something that can be corrected.

Please do keep me posted on how you are progressing on trying to find a diagnosis. You're welcome to send me a private message at any time. I can at least provide moral support, and I certainly do understand what you're going through right now.

I cannot explain why my PT is less bothersome now. I think that, in my case, I have somewhat habituated to it.

Take care, and I wish you success. Don't give up; PT is often treatable if a cause can be found!

Best wishes,
Karen

 

[Aaron123]

the 2nd opinion of an ENT had a 2nd opinion and this radiologist said diverticulum of CSF in the jugular

Can you explain any more about the bold part of the quote? I understand if you can't because it can be hard to keep everything straight.