Headaches, Off-Balance, and Ringing in the Ears

[Guest guest]

Hi all, I was just wondering if any other PSCers have experienced what

I'm dealing with at the moment. I shouldn't say " at the moment "

because I've been dealing with it for the past year. I have headaches

almost every day, that get much worse when coughing or sneezing. I

feel off-balance all the time, and I have loud ringing in both ears

which varies in intensity but never goes away completely. I have seen

a neurologist, an ENT doctor, and talked with my GI doc about it. All

to no avail. The neuro doc gave me an anti-depressant, which I took

for two days then trashed (hated it), and the ENT doc said it was just

run-of-the-mill tinnitus from listening to too much rock music in my

youth. Bah! Oh, and I should mention I take Urso and Asacol.

Take care.

, PSC 2000, UC 1991

[Guest guest]

:

My husband (PSC diagnosis '99) first presented with headaches that were so

debilitating that we went to Mayo where he was diagnosed with PSC. The

headaches probably weren't the result of PSC but just one of the many

precursers. He has had many episodes of the same symptoms you are having and he

was even checked for Minier's Disease. He now used antihistimine on ocassion

thinking it is allergy related and if the dizziness gets too bad we prop him up

in bed with pillows (non allergenic) and he takes dramamine which knocks him out

for a few hours. Recently Mayo's newsletter addressed a new found way to

readjust the ear pressure with simple head alignments. I filed it somewhere and

I am sure you can go on line to Mayoclinic.com and go back over the newsletters.

Tinnitus (sp) also is brought on with most NSAIDS when Bob uses them, and me

also, and I don't have PSC

Good Luck, Let me know.

dee

[Guest guest]

Hi ;

I'm sorry to hear about your hearing and balance problems, and

headaches. I would not rule out autoimmune inner ear disease as a

possible cause:

Acta Otolaryngol. 2006 Oct;126(10):1012-21.

Immune-mediated inner ear disease.

Bovo R, Aimoni C, i A

Department of Audiology, University of Ferrara, Ferrara, Italy.

bovoroberto@...

The incidence of autoimmune inner ear disease (AIED) is difficult to

determine: probably it is a rare disease, accounting for <1% of all

cases of hearing impairment or dizziness. Nevertheless, the diagnosis

of AIED might be overlooked because of the lack of a specific

diagnostic test. The hallmark of this clinically diagnosed condition

is the presence of a rapidly progressive, often fluctuating,

bilateral sensorineural hearing loss (SNHL) over a period of weeks to

months. The progression of hearing loss is too rapid to be diagnostic

for presbycusis and too slow to conclude a diagnosis of sudden SNHL.

Vestibular symptoms, such as generalized imbalance, ataxia,

positional vertigo and episodic vertigo may be present in almost 50%

of patients. Occasionally only one ear is affected initially, but

bilateral hearing loss occurs in most patients, with symmetric or

asymmetric audiometric thresholds. Almost 25-50% of patients also

have tinnitus and aural fullness, which can fluctuate. Systemic

autoimmune diseases coexist in 15-30% of patients. PMID: 16923703.

Unfortunately, this can occur in association with inflammatory bowel

disease.

Best regards, and good luck in getting a doctor to take this

seriously!

Dave

(father of (22); O7/03; UC 08/03)

[Guest guest]

YES, YES, and YES! Wow it amazes me how many symptoms I have in

common with some of you! I get ringing in the ears a lot, very high

pitched at times and quite annoying. And headaches, had them for a

long time. They are terrible. And off balance, yah, I'm not graceful

at all. In fact, last night I took a shower when no one was home (bad

me) and I leaned my head back to rinse out my hair, then leaned my

head back forward and down I went, got so dizzy I fell and now have a

HUGE bruise on my hip. :-( I thought I was just clumsy.

in NE

PSC 8/07

PBC 10/06 (probably)

[Guest guest]

I have these symptoms, but they are directly related to the use of

gentamicin after my surgery. There are several aminoglycosides that

can cause what I have: " bilateral vestibular loss. " Erythromycin is

one of them and is more commonly used than the " gent. "

Penny

I

> feel off-balance all the time, and I have loud ringing in both ears

> which varies in intensity but never goes away completely.

[Guest guest]

I've also been having bad headaches, but an MRI and a CAT scan show

that everything is basically normal. I was told that this, and my

dizziness were not part of the symptoms of PSC, but I guess that since

some of us experience the same things, my gi could be wrong. I

mean,there hasn't been a whole lot of research done about PSC. So, who

knows? I'm taking something now for the migraines, which seems to be

working, I've been taking it for a week on Sunday. Although, when I

think about things that get me really stressed, I can feel the dull

throb of a headache, but not at the intensity of it before the

prescription. It's amitriptyline, which I feel weird about taking

because the label says that it's usually used to treat anxiety and

depression, but I don't really care since it helps my migraines. If

anyone else out there decides to ask their doctor about it, I hope it

works for you, too.

>

> YES, YES, and YES! Wow it amazes me how many symptoms I have in

> common with some of you! I get ringing in the ears a lot, very high

> pitched at times and quite annoying. And headaches, had them for a

> long time. They are terrible. And off balance, yah, I'm not

graceful

> at all. In fact, last night I took a shower when no one was home

(bad

> me) and I leaned my head back to rinse out my hair, then leaned my

> head back forward and down I went, got so dizzy I fell and now have

a

> HUGE bruise on my hip. :-( I thought I was just clumsy.

>

> in NE

> PSC 8/07

> PBC 10/06 (probably)

>

[Guest guest]

The dizziness and headaches sound like they also may be related to dehydration. I wake up feeling very out of it, achy and often with a headache. I start drinking lots of water, and coffee to get me moving. I have a j-pouch, so I really dehydrate fast, and since I'm not drinking while I'm sleeping, I wake up pretty dehydrated. Although I keep 2 bottles of water next to the bed so I can drink when & if I do wake up. I need bottled water because if it's in a glass, my cats think the water is for them, and they come by and drink it :-) Sometimes the headache doesn't go away until after I've had a shower (more hydration).

However, it sounds as though you're headaches may be worse than mine. So I'm glad the medicine is helping.

-Marie Tease your brain--play Clink! Win cool prizes!