hi, I'm new.thank you google

[Kellster]

I'm going mad crazy! In tears as once again I find myself googling for help at night.I think my doctors think I am crazy. I totally get how this has driven ppl to attempt self harm.I see a neuro as well as my regular dr. My most recent test was MRA on my neck.also had CT scans of head& neck.and MRI of head&neck.only think seen is mild low-lying cerebellum tonsils.I also have suffered with migraines since I was a teen.They're severe now, as many as 8 monthly PLUS ever.single.day I have a 'regular' headache.but I welcome them...I can tolerate them.the migraines I cannot! I've recently had to go to the E.R several times to help take the pain away.I don't know what else to do! I feel this pressure& last yr I had a loud pop sensation with momentarily loss of hearing in my left ear. When I look left it becomes worse.if I bend my chin to neck it lessens.if I apply hard pressure before my ear love it stops but then rushes even faster when I let go.what do I do next? Right now I'm in so much pain.when I bend down even partially my head pounds in rhythm to my ear& makes tears jolt to my eyes it hurts so bad.Medicines aren't helping much if at all.migraines&pulsatile tinnitus are controlling& ruining my life.I don't think anyone takes me seriously about the severity or how crazy it can make one feel with that whooshing in tune to my own damn pulse that seems to never stop.

 

[Kellster]

Sorry for the typos,

 

[Karen]

Hi, Kellster, and welcome to Tinnitus Talk!

I have pulsatile tinnitus, too. I've had it since 2010, after taking a blood pressure drug. Like you, I've had a lot of tests, and no one has found anything yet. I've been to a lot of doctors and tried various types of alternative practices, such as acupuncture, to see if they would help. Mine is much calmer, but I still have the pulsating.

One thing you could check into; have you ever heard of Benign Intracranial Hypertension? Several people I've heard of who have pulsatile tinnitus have been found to have this condition. You might try Googling it, to see if any of the symptoms, such as headache and pressure, are similar to yours.

Also, if you'd like to send me a private message, please click on Inbox above, and send a message to "Karen".

Best wishes,
Karen

 

[Kellster]

Those headaches exactly describe what I wake with every day unless I have a migraine.picking up the toys from the floor has me in pain within 15m just from the bending causing pressure& head pain.ty,I will be sure to mention it to a doctor.I've had vision problems too but figured it was normal regression

 

[Karen]

@Kellster,

I have heard that there is a Facebook group (private group) that is entirely about Benign Intracranial Hypertension. I think they also call it "IIH". You might check that out, too.

The pulsating alone can drive you crazy, so I can imagine you're having a really rough time with the headaches and pressure, too!

Do you have any idea what might have happened to make yours start, or did it just begin suddenly? You mention picking up toys; do you have a small child? Did this begin after pregnancy? (Just a thought....)

Karen

 

[Karen]

Another question: Do you have normal blood pressure, or is your blood pressure higher than normal?

 

[Kellster]

Hi.I have 4 kids, but the tinnitus began during my 3yr olds pg or right after(hard to pinpoint) my migraines also became quite severe while pg& landed me in the er a few times.my bp is usually on the mid to low end but was very high at the end of his pregnancy and gets very high during the severe migraines.

 

[Karen]

Hmm! Maybe you could talk with your doctor some more about how it began, and the circumstances under which it began. Pregnancy can bring on tinnitus, and probably pulsatile tinnitus, as well. My daughter had tinnitus during her pregnancy and just after, but it finally disappeared on its own.

I'm still wondering if you might be prone to the benign intracranial hypertension. You might want to check that out with your doctor.

 

[2014winner]

I'm going mad crazy! In tears as once again I find myself googling for help at night.I think my doctors think I am crazy. I totally get how this has driven ppl to attempt self harm.I see a neuro as well as my regular dr. My most recent test was MRA on my neck.also had CT scans of head& neck.and MRI of head&neck.only think seen is mild low-lying cerebellum tonsils.I also have suffered with migraines since I was a teen.They're severe now, as many as 8 monthly PLUS ever.single.day I have a 'regular' headache.but I welcome them...I can tolerate them.the migraines I cannot! I've recently had to go to the E.R several times to help take the pain away.I don't know what else to do! I feel this pressure& last yr I had a loud pop sensation with momentarily loss of hearing in my left ear. When I look left it becomes worse.if I bend my chin to neck it lessens.if I apply hard pressure before my ear love it stops but then rushes even faster when I let go.what do I do next? Right now I'm in so much pain.when I bend down even partially my head pounds in rhythm to my ear& makes tears jolt to my eyes it hurts so bad.Medicines aren't helping much if at all.migraines&pulsatile tinnitus are controlling& ruining my life.I don't think anyone takes me seriously about the severity or how crazy it can make one feel with that whooshing in tune to my own damn pulse that seems to never stop.

Hi Kel,
I have had tinnitus "in" both of my ears following a hearing loss caused by a middle ear infection.
I use search engines, yes, Google, to find answers and treatments also.
Are you able to work or go to school and achieve at your pre-tinnitus level? We have to have hope, Kel.
I am sure that you know about the American Tinnitus Association.
Do you have tinnitus without hearing loss?
Best wishes, Kel.

Winner 2014

 

[Karen]

Kel,

No matter what happens, please don't give up! I hope you're doing OK this afternoon, and that the headache hasn't gotten any worse. Please do keep on those doctors to see what is causing this, and if they aren't able to help you, try another doctor. Many doctors don't know what to do about pulsatile tinnitus, but there ARE doctors out there who can help.

Please keep in touch, and let us know how you're doing. We care!!

 

[Kellster]

Hi Kel,
I have had tinnitus "in" both of my ears following a hearing loss caused by a middle ear infection.
I use search engines, yes, Google, to find answers and treatments also.
Are you able to work or go to school and achieve at your pre-tinnitus level? We have to have hope, Kel.
I am sure that you know about the American Tinnitus Association.
Do you have tinnitus without hearing loss?
Best wishes, Kel.

Winner 2014

I'm on disability from back issues.had instrumental spinal fusion 4yrs ago. I have extreme sense of hearing to noise even far away but close up sometimes I don't hear some words in a conversation.during an episode of severe head pain my hearing is effected with a muffled sensation, like now.

 

[Kellster]

I didn't know of the drug list associated with tinnitus.do they apply to pulsatile? Every medication I'm on is on that list. omg! All my migraine meds,sleep&asthma meds and chronic pain meds.really? ? ! ! Talk about a dead end street

 

[Karen]

Are you referring to the list of ototoxic meds? Yes, there are a lot of drugs on that list!

You bring up a good point; I don't know for sure if an ototoxic drug would make pulsatile tinnitus worse, since pulsatile tinnitus usually has a vascular cause. Ototoxic drugs are those that can cause damage to the tiny hair cells in the inner ear, which can worsen or cause tinnitus.

 

[Kellster]

I'm hoping not, because there's no way I can just quit them all

 

[Kellster]

Karen! I owe you so very much, ive told many ppl about you...referred to as the angelthat reached out to me on here.you may have saved my life! I thank you ! I'm just home from the hospital. Had my first spinal tap, ordered by my neuro after I told him I bet $ I have IH. My opening pressure was a whopping 60! (Normal is 10-15! ) dr drained a lot off me & closed me off at 10.5! I'm waiting on results of a M.S. test as well. Now I can begin to live again &seek proper treatment. Ive suffered for many yrs silently and you karen have ended that for me.I'll never forget your kindness that night! I owe you so much, you've no idea how grateful I am to you.thank you!

 

[Karen]

Hi, @Kellster,

I've been out of town for a few days this week, and haven't been on Tinnitus Talk lately. I just read your latest post, and am so glad to hear that you've found out what the problem was!! That is great news, and I'm glad your doctor administered the spinal tap! I hope that you are feeling better, and with treatment of your IH, will continue to improve. Wonderful, wonderful news!!!! I'm very glad I was able to help in some small way.

Please update again and keep me posted on how you're doing!!

Sincerest best wishes,
Karen

 

[Kellster]

My tinnitus is silent for the first time in 4yrs .I know it very well may come back as my fluid regenerated, but I'm sooo enjoying these silent moments within my head.it's indescribable to not have the pulsing after so many years! It's left me speechless!

 

[Miss lavender]

This is great news Kellster. Hope it lasts forever. It gives us all hope.