Tinnitis-Deaf or IH related?

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Annie555J5

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Hi, I was born deaf with severe profound hearing loss.

I was recently diagnosed with Intracranial Hypertension which is "high spinal fluid pressure" which causes blindness, headaches and tinnitis if untreated.

How it happened was there were floaters in my vision, then was taking medication for the "swelling" of the optic nerve. It went into remission until it came back some years later and tinnitis popped up so bad like a chainsaw sound or like when somone is drilling the cement. I had headaches along with that as well... my eyes were fine.

Found out that my spinal fluid pressure was high from a spinal tap and that it was causing the headaches, but the doctors would not dare to comment anything on the tinnitis because I'm deaf. That they couldn't do anything about it.

The awful tinnitis has been going on for 3 months, waking me up at 2 am, and every 2 hours.

Any input about this, is it really common for deaf people to have that kind of loud tinnitis, or is it really related to IH (intracranial hypertension) as it states in their symptoms it's called pulsatile tinnitis. Here's a link about that:
IHRF | Symptoms | Chronic IH Symptoms Introduction www .ihrfoundation.org/intracranial/hypertension/info/C18

Would appreciate your help. Thanks!

Annie :hmm:
 
I don't know anything about Intracranial Hypertension. But I know tinnitus can be bad, because at one point in my life I experienced bad tinnitus, which sounded like a fax machine sound that you hear when you dial a fax number. I was also losing sleep.

Is your tinnitus always the same everyday? In my case, I find that lack of sleep or stress can cause tinnitus. Medication may also cause tinnitus, as well as the food/diet. Some people find that they can reduce tinnitus by listening to music to mask the tinnitus. I also find that acupuncture can help reduce tinnitus.

Sorry I don't have any other advice. But, I hope you can find a way to reduce or eliminate tinnitus.
 
I have severe tinnitus and i am hoh, but my ent/audi told me that tinnitus can be really bad too for hearies too but it is not uncommon at all for deaf or hoh to have some form of tinnitus
 
Thanks for replying

I guess not many people are aware of what Intracranial Hypertension is. If it's untreated, one can go blind. The symptoms are that it can be accompanied with "pressure" headaches, pulsatile tinnitus, and other symptoms. Doctors are wary about how this particular tinnitus had came about and whether to blame it on deafness or on the intracranial hypertension. In fact, when that "roaring" sound came about, it happened 2 weeks after I had hit my head on the freezer door (very hard that it brought tears to my eyes, and hurt so bad for 2 hours, even with ice bag over it). Whether it was related to brain trauma or intracranial hypertension or deafness, it'll still be a mystery. I guess my next concern is if my intracranial hypertension gets worse with visual symptoms---how would I prepare myself to adapt to a deaf/blind lifestyle? ~Annie
 
The only thing someone can do to make sure tinnitus isn't affecting brain is get mri/ct. That's what my dr's did to rule out possible trauma or a tumor or anything
 
Yeah, I did that, the head CT and the Brain MRI... nothing remarkable but the spinal tap was high...indicating that I have Intracranial Hypertension...many people with intracranial hypertension (IH) have really bad tinnitus... still asking around.... so hard to tell the difference what is really the cause of tinnitus.
 
Annie,

I'm deafblind (totally blind with bilateral cochlear implants) and would be happy to answer any questions you have about deafblindness. I've learned how to cope successfully without any hearing or vision. (I had severe-profound hearing loss for 10 years prior to receiving my cochlear implants and communicated with others through the use of alternative communication techniques for the deafblind such as tactile sign, TeleBraille/Braille TTY, etc.) If you have any questions, please feel free to send me a private message. :)
 
Has any physician discussed or suggested a shunt coming from one of your ventricles in your brain where CSF is produced. This is one way to help treat refractory IH.
 
Have you had cerebral angiogram to evaluate all your vessels in the basilar artery and its branches and possible link to any neurological defecits to the VIII cranial nerve (vestibulocochlear). The tinnitis could just be idiopathic (meaning unknown cause). IH is a very peculiar problem mostly caused by other disease or problem.
 
how often do you follow up with neurologist, and do you have permanent device to monitor ICP, or do you frequently have lumbar tap to check pressure? Also, have you had ICH your entire life or at what age did it onset? did it occur after any particular even?
 
I don't currently have papilledema (swelling of the optic nerves) as the Diamox is taking care of that... has been for 2 years... I had been Dx'ed with Intracranial Hypertension in 2000 (age 30)-had severe papilledema, but it went into remission after 6 months with Diamox. It came back 6 years later with mild papilledema..been taking Diamox for almost 2 years now, but the tinnitus came up really bad and disrupting my sleep... My lumbar puncture showed that it was high at 41 mg (normal is 15).(last month) My condition has not worsen enough to warrant a VP shunt or anything like that. Intracranial Hypertension websites show that one can have headaches and tinnitus without papilledema. So, I'm just grasping at straws... It could have happened after my taking prednisone...just a possibility. This was my 3rd LP (first one back in 2000, 2nd was in ER for other reason) Right now, I'm trying to see a neuroendocrinologist (specializing in pituitary disorders), to see any other possible causes for IH. Ceberal angiogram.... that is new to me... who does that? Neurosurgeon or? Thanks for replying I appreciate that and hope to hear from you again. (Sorry wasn't around the past few days due to ughhh headaches) ~Annie
 
You are right that many with ICH have not all the symptoms. It's good you are not having papilledema at this time, very lucky. Diamox is one of best treatment drugs, but you need to monitor Sodium level closely.
The predisone perplexes me. Although it would suppress an autoimmune response and increase fluid retention in tissue because of ADH, I don't know how this would influence pressures or decrease them for that matter in this case. I don't know how much corticosteroids cross blood brain barrier. Wow! 41 is high high high LP. were you not having other symptoms with this high of ICP? Patients I see with prolonged ICP up in that range suffer severe neurological damage. One of the only benefits in your case of a cerebral angiogram would be to monitor for any stenosis (hardening or narrowing) on inside of important cerebral arteries leading to cranial nerves.
 
I spoke with the neurologist about what you had mentioned and she said to try to have a MRVenogram. If nothing from that, then another LP.... ~Annie
 
that might help diagnose if there are any venous issues preventing normal blood return to heart and there fore increasing ICP this is more rare than having intracerebral artery or arteriole problems. It is kind of like chronic venoustasis of legs. This is much more common than in brain because there are more causes and gravity only facilitates how it works. Here most commonly a disease state causes damage, like sclerotic, or stenotic veins in legs. The resulting "backup" or delay for that matter will force plasma into the tissue causing edema in legs. That is only example there are many causes of edema and therefore this is not a diagnoses.
 
well doug, MRV showed nothing... not really looking forward to another LP.... last time I had an LP, nothing happened the next day, but the following day for 5 days straight, I had huge headaches.... from what I think I understand it was a low pressure headache.... but the thing is, many people have different opinions about how an LP should be done, that is... the patient should lie down for 30 mins to 4 hours after a fluoroscopic-guided LP. I was told to go ahead and go home right after the procedure and got confused. I asked them if I was supposed to lay down?? They said no... you have someone to take you home so no big deal. Some doctors are saying it's a myth that you'll get a headache if you sit up after a lumbar puncture... that was different when I had the spinal tap when I was in the ER, told me to lie down for an hour afterwards. I'd wish the doctors would get their heads straight and have an uniform protocol than confusing us all the time. :hmm: ~Annie
 
Annie555J5 said:
well doug, MRV showed nothing... not really looking forward to another LP.... last time I had an LP, nothing happened the next day, but the following day for 5 days straight, I had huge headaches.... from what I think I understand it was a low pressure headache.... but the thing is, many people have different opinions about how an LP should be done, that is... the patient should lie down for 30 mins to 4 hours after a fluoroscopic-guided LP. I was told to go ahead and go home right after the procedure and got confused. I asked them if I was supposed to lay down?? They said no... you have someone to take you home so no big deal. Some doctors are saying it's a myth that you'll get a headache if you sit up after a lumbar puncture... that was different when I had the spinal tap when I was in the ER, told me to lie down for an hour afterwards. I'd wish the doctors would get their heads straight and have an uniform protocol than confusing us all the time. :hmm: ~Annie
Click to expand...

Yeah, the laying down after a LP is an ambiguous thing with doctors. Many will say it decreases severity and diminish the occurance of a "spinal headache" I don't know of scientific data that points either way.

I had LP before and got a CSF leak. Like you I didn't have any symptoms or sign of side effect of complication at first or even day after. The next day I went to work and boom, it hit me so hard. It was worst headache I've ever had. I went back down to ER and we called the anesthesiologist to come do an epidural blood patch. they draw your own blood and then inject it into the previous LP site. For me this did the trick and headache was getting better within a few hours.
 
Annie555J5 said:
Hi, I was born deaf with severe profound hearing loss.

I was recently diagnosed with Intracranial Hypertension which is "high spinal fluid pressure" which causes blindness, headaches and tinnitis if untreated.

How it happened was there were floaters in my vision, then was taking medication for the "swelling" of the optic nerve. It went into remission until it came back some years later and tinnitis popped up so bad like a chainsaw sound or like when somone is drilling the cement. I had headaches along with that as well... my eyes were fine.

Found out that my spinal fluid pressure was high from a spinal tap and that it was causing the headaches, but the doctors would not dare to comment anything on the tinnitis because I'm deaf. That they couldn't do anything about it.

The awful tinnitis has been going on for 3 months, waking me up at 2 am, and every 2 hours.

Any input about this, is it really common for deaf people to have that kind of loud tinnitis, or is it really related to IH (intracranial hypertension) as it states in their symptoms it's called pulsatile tinnitis. Here's a link about that:
IHRF | Symptoms | Chronic IH Symptoms Introduction www .ihrfoundation.org/intracranial/hypertension/info/C18

Would appreciate your help. Thanks!

Annie :hmm:
Click to expand...


Hello

Im new on here, so was surfing around and saw this about tinnitus, i suffer severe Tinnitus 24/7, i guess its severe for me, so i call it severe, i used to have bad bad bad nights sleep, til last year, i have been having bad muscle spasms in side of face because of the many operations ive had and having, he prescribed me diazepam, i guess its same name over the pond? i dont know, but i take 1x5mg at about 12 or 1am and blinking heck im getting 4 or 5 hours sleep,its helped a bit on the tinnitus and also muscle spasms, so i guess i got lucky. its not the amount i want but it helps, i could take 1 more but i dont want to take too many of them so i will make do with the amount of sleep im getting...Let em know if you get to try bit and if it helps you for few hours, its better than just 1 0r 2 hours and broken sleep isnt it?

Stu
 
lilitalia89 said:
I have severe tinnitus and i am hoh, but my ent/audi told me that tinnitus can be really bad too for hearies too but it is not uncommon at all for deaf or hoh to have some form of tinnitus
Click to expand...



yeah i have it and its fucking annoying. Some nights i swear i feel like stabbing my ear with a rusty butter knife because it literally drives me up the wall.
 
My recomendation would be to go to a different doctor. Get two or three different opinions. If only you lived in Washington State I could recommend one of my doctors I schedule for.
 
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