Re: Question from our Lany on hearing loss ...

[Guest guest]

Yes. I've had tinnitis, don't hear well, and have periods where hearing goes away completely for a few minutes, but comes back... but mine started with Pseudotumor Cerebri. It's been present 8 years now, and is worse when I have fluid on my brain. So, I'm not sure if that's considered related to SBI or not, but I have it. I've not had my hearing checked, because of insurance coverage, but it's been recommended. My husband gets aggravated because I can't hear well.

Also, I'm frequently diagnosed with suppurative otitis. It's been chronic in the past, but has improved with time... but I'm sure that's something they'd have checked with this gal.

Brigite

Have a great weekend everyone!

[Guest guest]

I have a hearing loss that has been stable for the past several years.

My audiologist seems to think that by the type of loss it is, it was

Mumps when I was a kid. It was mild in the left ear and moderate in the

right, borderline for a hearing aid.

Here is the interesting part: I got my hearing tested about four months

ago, when I was starting to get sick from my implants (it took me a

short time to get them out once I started seeing changes in my health).

But the low range of my hearing got worse. The audiologist says it is

not common except for tumors and autoimmune problems. I have no

symptoms of tumors.

I am ready for a hearing aid in the right ear.

I really believe this could have been some part of the autoimmune

activity going on. I thought I was the only one.

Dawn

[Guest guest]

Dawn, I don' t think it's all that uncommon - just not recognised . . . A neurologist who spoke to our support group notice that an unusual number of implant women were coming to him with sudden, or marked hearing loss. He asked for a show of hands . .. Quite a few held up their hand. He didn't pursue it any further. The woman sitting next to me told me the hearing in one ear turned off suddenly while was on the telephone . .. never to return. The hearing in one of my ears turned off while I was watching TV . . . After a round of steriods, I got some of the hearing back. They dx'd me with Mienere's . . . I argued with them . . .they insisted . . . But, since I never developed the vertigo, or had reoccuring episodes, I still think I'm right. I suspect something damaged the auditory nerve . . . But to compound that, I've also had a persistent

fungal infection in that ear. . . Rogene

[Guest guest]

Hearing loss and ear buzzing (only while sleeping) were some of the

many symptoms that came along with implants. Since I only had them

six months and my body fell apart right after getting them, I can

only imagine the shape I'd be in if I didn't get them removed.

Sis

>

> Yes. I've had tinnitis, don't hear well, and have periods where

hearing goes

> away completely for a few minutes, but comes back... but mine

started with

> Pseudotumor Cerebri. It's been present 8 years now, and is worse

when I have

> fluid on my brain. So, I'm not sure if that's considered related

to SBI or

> not, but I have it. I've not had my hearing checked, because of

insurance

> coverage, but it's been recommended. My husband gets aggravated

because I can't

> hear well.

>

> Also, I'm frequently diagnosed with suppurative otitis. It's been

chronic in

> the past, but has improved with time... but I'm sure that's

something they'd

> have checked with this gal.

>

> Brigite

> Have a great weekend everyone!

>

[Guest guest]

Oh my, this does not sound good! Ilena, have you seen many women with hearing loss after implants? I know Rogene had some ear issues. I saw an ear specialist when I got sick due to the dizziness (and surprisingly, he did not treat me like I was a lunatic when I mentioned implants--he really was a gem, and in fact, wanted me to keep him updated.) I've developed Tinnitus recently, so I just don't know what to think of it all. PattyIlena Rose <colibrimama@...> wrote:

(Posted by Lany on her SBIPrayer Forum ... please write her directly and send me a copy of any responses ... thanks from Ilena) "lany" <lany25webtv (DOT) net> Dear Members,I wrote you not long ago, letting you know that I had lost nearly all ofthe hearing in my left ear, and that I had severe tinnitus. I don't have Meniere's Disease.Day before yesterday, I went completely deaf in my left ear. I saw

anaudiologist today who dx'd me as have "moderate to severe hearing losswith tinnitus" She said I would be a candidate for a hearing aid, but not for about ten years or so.I've not been able to hear at all since Wednesday afternoon, and I'mafraid I will lose my hearing completely, or bilaterally.Has anyone had this problem, or know of a SBI Patient who has? It could be from a dozen different things, but from the very baffled looks on thedoctor's faces, and the fact that my ENT wrote me a hand-writtten letterencouraging me to go to the audiologist for further evaluation, I have to wonder why this has happened, how serious it is, and why they are sobaffled, like most doctors get when they are presented with one of our'weird' illnesses.I can't believe all of this . . . I think I'm still dealing with shock and denial.Lany http://community-2.webtv.net/lany25/LifeAfterBreast0/

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

I think we received about a dozen replies about this this ...

Yesterday, I was talking with Sally Kirkland about a radio show

we're going to be doing soon ... and she mentioned her Tinnitus too.

For anyone here who doesn't know Sally, she was the first high

profile Hollywood woman to come out publicly about her implant

problems. She was even filmed the day of her explant coming out of

surgery. She had her own radio show and now has a weekly spot that

I'll be telling y'all more about in a little while. Since 1998, she

has helped other actresss muster up the courage to speak out.

She is passionately concerned about the children's issues ... please

read our Press Release below. An alternative medicine advocate also,

she too has been attacked by those who attack me and my message.

http://sallykirkland.com/pages/institute.html

http://sallykirkland.com/Press_Release.htm

> (Posted by Lany on her SBIPrayer Forum ... please

write her directly and send me a copy of any responses ... thanks

from Ilena)

>

> " lany " <lany25@...>

>

> Dear Members,

>

> I wrote you not long ago, letting you know that I had lost nearly

all of

> the hearing in my left ear, and that I had severe tinnitus.

> I don't have Meniere's Disease.

>

> Day before yesterday, I went completely deaf in my left ear. I saw

an

> audiologist today who dx'd me as have " moderate to severe hearing

loss

> with tinnitus " She said I would be a candidate for a hearing aid,

but

> not for about ten years or so.

>

> I've not been able to hear at all since Wednesday afternoon, and

I'm

> afraid I will lose my hearing completely, or bilaterally.

>

> Has anyone had this problem, or know of a SBI Patient who has? It

could

> be from a dozen different things, but from the very baffled looks

on the

> doctor's faces, and the fact that my ENT wrote me a hand-writtten

letter

> encouraging me to go to the audiologist for further evaluation, I

have

> to wonder why this has happened, how serious it is, and why they

are so

> baffled, like most doctors get when they are presented with one of

our

> 'weird' illnesses.

>

> I can't believe all of this . . . I think I'm still dealing with

shock

> and denial.

>

>

> Lany

> http://community-2.webtv.net/lany25/LifeAfterBreast0/

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

wow... this isn't sounding good.. I am having weird ear issues as well now... I am assuming from what I have read it may be neurological issues from the epilepsy/head & brain injury/and or the meds I am taking for the above mess that happened in June but my ears have been going crazy lately...

totally sensitive to sound - the tiniest thing sets them off as they are so sensitive to anything now. the smallest sounds are as if someone is slamming a book against my head.... it is torture... a dog barking down the road, etc... my ears ring constantly, we had to buy a new alarm clock as I can no longer tolerate the sound of our old one... I am ultra sensitive to everything now and it is scary. All sounds smells... my sense of taste has completely changed.... I went to my Doc on Monday morning and got a nerve block injection in my skull - in my greater Occipital nerve and several trigger point injections in my neck to try to stop the pain in my head.... it is still there worse than ever.... I guess I have had a tummy flu ever since as Monday nite I started vomiting and didn't stop until last nite... it was awful... hubby had to take off work, AGAIN, and rush me to the doc as I was trying to pick my little Logan up a few houses down at his bus stop and I was so ill I got sick and fell in the neighbors yard... I was so dizzy I couldn't stand back up. this was Tuesday... what a nightmare. He has taken off so much time in the last two months... my whole body feels like I was beat with a stick now from all the vomiting.... I feel a little better.... not as dizzy.

I am not sure what to think anymore - if it is the meds or the injury or ???

oh well -

shari

[Guest guest]

Oh Shari, I feel so bad for you and your family . . . What a nightmare! I hope you're feeling better by now. . . I don't know what's going on as far as the sounds, smells and tastes go. . . What does the package insert say about your medication? . .. Does it have silicone dioxide in it by any chance? The only suggestion I can make is to wear some ear-muff-like sound suppressor until you get a chance to see what Dr. Kolb's office can recommend. Hugs and prayers, Rogene

[Guest guest]

rogene

this has been going on for weeks..... I have tried to bring it up to my neuro but he is as bad as all the crappy PS's out there... doesn't have time to talk or answer questions.... sheeeshhh

they are all the same.

anyways - my appt w/ doc Kolb is the 25th of this month. hopefully her tests will come back quickly and show what is going on... we will see. She wants to see the MRI and brain scans from my hospital visit... maybe she will have an answer for the seizures as well....

one of the meds I am taking for the epilepsy, I am weaning off on now....the one they gave me in the hospital that was causing some weird side effect I am down to half the dose for ten days then off completely now as I started a different one 6 weeks ago - lower dose now moved up to a higher dose. Topomax... is supposedly good for headaches as well - we will see. No telling what they have in them - I have not seen a mfg insert... just the pharmacy handout....my problem now is that I have no choice nut to take them as once you are on them if you miss even one dose it puts you at a very high risk to have another seizure... it is scary to with the type of seizures I have.... I have been doing a lot of research.... there are many kinds of epilepsy/seizure classifications... I has no idea.... the type I have are scary as you lose all consciousness and fall no matter where you are with no warning... I am not sure if my body can take another head/brain injury like it did before - that was really bad. every time I step into my shower or walk to my sons bus stop I think of it - if I have one here I am gonna hit really hard.... it is really scary so I am adamant about my meds as I do not want to do it again - certainly not in front of Logan... I have already traumatized the poor baby enough talking about it getting him prepared... he just turned 5 and he has seen dramatizations of what the seizures look like, knows who to call, what to tell them, his dads #, which neighbor to get... my moms work # if he can not get daddy on the phone... a lot for a 5 years old to have on his head - plus he just started school....I feel so guilty although I know it is not my fault. he was so scared the other day - Tuesday when I was throwing up at his bus stop when I picked him up - have to walk as I can no longer drive... he thought I was going to have a seizure as that is the first sign.... I kept throwing up and falling down as I was dizzy the whole way home from his stop.... he has been through sooo much in his 5 years here so far w/ me... explant - 2 sinus surgeries... can no longer work...sick all the time.... hospitalization from the seizure episodes, now this mess.... it is all he knows of me now.... I sure hope dr kolb can help as I would love my little boy to know more of his mom than this.... it is so sad.... everytime I think of it I cry.

sorry for the venting....

love to all

shari

[Guest guest]

oh Shari,

I am sending you love and healing energy! I have heard about Dr

Kolb, and I am sure that should shed some light on this for you. I

am thinking of you.

>

> rogene

>

> this has been going on for weeks..... I have tried to bring it up

to my

> neuro but he is as bad as all the crappy PS's out there... doesn't

have time to

> talk or answer questions.... sheeeshhh

>

> they are all the same.

>

> anyways - my appt w/ doc Kolb is the 25th of this month.

hopefully her

> tests will come back quickly and show what is going on... we will

see. She wants

> to see the MRI and brain scans from my hospital visit... maybe

she will have

> an answer for the seizures as well....

>

> one of the meds I am taking for the epilepsy, I am weaning off on

now....the

> one they gave me in the hospital that was causing some weird side

effect I

> am down to half the dose for ten days then off completely now as

I started a

> different one 6 weeks ago - lower dose now moved up to a higher

dose.

> Topomax... is supposedly good for headaches as well - we will

see. No telling what

> they have in them - I have not seen a mfg insert... just the

pharmacy

> handout....my problem now is that I have no choice nut to take

them as once you are

> on them if you miss even one dose it puts you at a very high risk

to have

> another seizure... it is scary to with the type of seizures I

have.... I have

> been doing a lot of research.... there are many kinds of

epilepsy/seizure

> classifications... I has no idea.... the type I have are scary

as you lose all

> consciousness and fall no matter where you are with no warning...

I am not sure

> if my body can take another head/brain injury like it did before -

that was

> really bad. every time I step into my shower or walk to my sons

bus stop I

> think of it - if I have one here I am gonna hit really hard....

it is really

> scary so I am adamant about my meds as I do not want to do it

again -

> certainly not in front of Logan... I have already traumatized the

poor baby enough

> talking about it getting him prepared... he just turned 5 and he

has seen

> dramatizations of what the seizures look like, knows who to call,

what to tell

> them, his dads #, which neighbor to get... my moms work # if he

can not get

> daddy on the phone... a lot for a 5 years old to have on his head -

plus he just

> started school....I feel so guilty although I know it is not my

fault. he

> was so scared the other day - Tuesday when I was throwing up at

his bus stop

> when I picked him up - have to walk as I can no longer drive...

he thought I

> was going to have a seizure as that is the first sign.... I kept

throwing up

> and falling down as I was dizzy the whole way home from his

stop.... he has

> been through sooo much in his 5 years here so far w/ me...

explant - 2 sinus

> surgeries... can no longer work...sick all the time....

hospitalization from the

> seizure episodes, now this mess.... it is all he knows of me

now.... I sure

> hope dr kolb can help as I would love my little boy to know more

of his mom

> than this.... it is so sad.... everytime I think of it I cry.

>

> sorry for the venting....

>

> love to all

>

> shari

>

[Guest guest]

Shari . .. The 25th will soon be here! . .. I know it can't be soon enough. At least she can still see you even if her arm is broken. I wonder how many implant women are having seizures? Of if your seizures have another cause? Your druggist can tell you exactly what is in your medication . . . They can even compound some drugs for you, leaving the silicone dioxide out. One woman told me that her meds actually cost less that way! I'd love to meet your little Logan! . . . He must be growing up fast! He was still a baby in the pictures of him you posted. Is he doing OK now? .. . No more rash? Love, Rogene

[Guest guest]

>

> rogene

>

> this has been going on for weeks..... I have tried to bring it up

to my

> neuro but he is as bad as all the crappy PS's out there... doesn't

have time to

> talk or answer questions.... sheeeshhh

>

> they are all the same.

>

> anyways - my appt w/ doc Kolb is the 25th of this month.

hopefully her

> tests will come back quickly and show what is going on... we will

see. She wants

> to see the MRI and brain scans from my hospital visit... maybe she

will have

> an answer for the seizures as well....

>

> one of the meds I am taking for the epilepsy, I am weaning off on

now....the

> one they gave me in the hospital that was causing some weird side

effect I

> am down to half the dose for ten days then off completely now as I

started a

> different one 6 weeks ago - lower dose now moved up to a higher

dose.

> Topomax... is supposedly good for headaches as well - we will see.

No telling what

> they have in them - I have not seen a mfg insert... just the

pharmacy

> handout....my problem now is that I have no choice nut to take them

as once you are

> on them if you miss even one dose it puts you at a very high risk

to have

> another seizure... it is scary to with the type of seizures I

have.... I have

> been doing a lot of research.... there are many kinds of

epilepsy/seizure

> classifications... I has no idea.... the type I have are scary as

you lose all

> consciousness and fall no matter where you are with no warning...

I am not sure

> if my body can take another head/brain injury like it did before -

that was

> really bad. every time I step into my shower or walk to my sons

bus stop I

> think of it - if I have one here I am gonna hit really hard.... it

is really

> scary so I am adamant about my meds as I do not want to do it

again -

> certainly not in front of Logan... I have already traumatized the

poor baby enough

> talking about it getting him prepared... he just turned 5 and he

has seen

> dramatizations of what the seizures look like, knows who to call,

what to tell

> them, his dads #, which neighbor to get... my moms work # if he

can not get

> daddy on the phone... a lot for a 5 years old to have on his head -

plus he just

> started school....I feel so guilty although I know it is not my

fault. he

> was so scared the other day - Tuesday when I was throwing up at

his bus stop

> when I picked him up - have to walk as I can no longer drive... he

thought I

> was going to have a seizure as that is the first sign.... I kept

throwing up

> and falling down as I was dizzy the whole way home from his

stop.... he has

> been through sooo much in his 5 years here so far w/ me... explant -

2 sinus

> surgeries... can no longer work...sick all the time....

hospitalization from the

> seizure episodes, now this mess.... it is all he knows of me

now.... I sure

> hope dr kolb can help as I would love my little boy to know more of

his mom

> than this.... it is so sad.... everytime I think of it I cry.

>

> sorry for the venting....

>

> love to all

>

> shari

>Shari,

I took Topomax for my migraines, it worked great and I lost 25 lbs on

them. I went off recently because I was sick of taking all those

meds, My headaches have come back.

Terri P

[Guest guest]

rogene

yes - I can not wait to get to Doc Kolb and see the results of her testing... i really hope she can find what is going on and help me....

Little Logan is a trip.... he is such a good boy. yes - he was much smaller in the pics I have posted. He turned 5 in June.... a little boy now! they grow up so fast... A lot of his rash symptoms have gone away as well as the unexplained fevers... hopefully his little body has been strong enough to purge the toxins out. he is much healthier now then he ever was other than his allergies. Those are kept under control w/ seasonal meds. he is a big boy - very strong and healthy - looks just like his dad... Hopefully he won't end up w/ any long term mess due to these implants as that was really upsetting me a few years back. Seems most of that is over - I hope. I pray for him every nite.

he is also handling me being ill very well - he looks after me and is very loving and helpful - I feel bad as I wish I could do more with him but his father does a lot with him when he gets home from work - I do all the inside stuff.... most all of his life he has known nothing but of me being sick so I guess he wouldn't know what to do if I wasn't. Kinda sad....I can not wait til the day when I can do all the things I want to with him.... make up some lost time

I will check into the meds at the pharmacy.. I would like to know what goes into them as well... you have brought up some interesting points...

I will check back in soon - gotta lay down - getting dizzy again

shari

[Guest guest]

Ah, Shari, This sounds just not good. I wish I knew how to help you through this. All I can do is be here and be your friend! This stuff is way beyond me....I can't imagine what your poor head is going through. But the vomiting, and sensitivity to noise...it sounds like some damage that isn't going to be healed anytime soon, but I am hoping that with some continued detoxing you will eventually see improvement. If you have lived this long without epilepsy episodes, I am hoping that with the right treatments to get your body healthy again, you can say goodbye to those seizures and never have to deal with them ever again. It's just a hope...but a big hope. Something happened to make you react this way, and it's weird because after explant, you should have been experiencing improvement. But the detox efforts have to be there. I know it was so hard for you. Just keep

thinking in terms of keeping your body on a healthy track...I wish you didn't have to take those meds! Pattyhalvey70@... wrote: wow... this isn't sounding good.. I am having weird ear issues as well now... I am assuming from what I have read it may be neurological issues from the epilepsy/head & brain injury/and or the meds I am taking for the above mess that happened in June but my ears have been going crazy lately... totally sensitive to sound - the tiniest thing sets them off as they are so sensitive to anything now. the smallest sounds are as if someone is slamming a book against my head.... it is torture... a dog barking down the road, etc... my ears ring constantly, we had to buy a new alarm clock as I can no longer tolerate the sound of our old one... I am ultra sensitive to everything now and it is scary. All sounds smells... my sense of taste has completely changed.... I went to my Doc on Monday morning and got a nerve block injection in my skull - in my greater Occipital nerve and several trigger point injections in my neck to try to stop the pain in my head.... it is still there worse than ever.... I guess I have had a tummy flu ever since as Monday nite I started vomiting and didn't stop until last nite... it was awful... hubby had to take off work, AGAIN, and rush me to the doc as I was trying to pick my little Logan up a few houses down at his bus

stop and I was so ill I got sick and fell in the neighbors yard... I was so dizzy I couldn't stand back up. this was Tuesday... what a nightmare. He has taken off so much time in the last two months... my whole body feels like I was beat with a stick now from all the vomiting.... I feel a little better.... not as dizzy. I am not sure what to think anymore - if it is the meds or the injury or ??? oh well - shari __________________________________________________

[Guest guest]

Shari, I really hope Dr. Kolb can offer you some insight as to what is going on, and get some new tests that will give the right clues. The 25th is still over a week away...how are you getting up there? Who is going with you? Will you be staying overnight? Patty halvey70@... wrote: rogene this has been going on for weeks..... I have tried to bring it up to my neuro but he is as bad

as all the crappy PS's out there... doesn't have time to talk or answer questions.... sheeeshhh they are all the same. anyways - my appt w/ doc Kolb is the 25th of this month. hopefully her tests will come back quickly and show what is going on... we will see. She wants to see the MRI and brain scans from my hospital visit... maybe she will have an answer for the seizures as well.... one of the meds I am taking for the epilepsy, I am weaning off on now....the one they gave me in the hospital that was causing some weird side effect I am down to half the dose for ten days then off completely now as I started a different one 6 weeks ago - lower dose now moved up to a higher dose. Topomax... is supposedly good for headaches as well - we will see. No telling what they have in them - I have not seen a mfg insert... just the pharmacy handout....my problem now is

that I have no choice nut to take them as once you are on them if you miss even one dose it puts you at a very high risk to have another seizure... it is scary to with the type of seizures I have.... I have been doing a lot of research.... there are many kinds of epilepsy/seizure classifications... I has no idea.... the type I have are scary as you lose all consciousness and fall no matter where you are with no warning... I am not sure if my body can take another head/brain injury like it did before - that was really bad. every time I step into my shower or walk to my sons bus stop I think of it - if I have one here I am gonna hit really hard.... it is really scary so I am adamant about my meds as I do not want to do it again - certainly not in front of Logan... I have already traumatized the poor baby enough talking about it getting him prepared... he just turned 5 and he has seen dramatizations of what the seizures look like, knows who to call,

what to tell them, his dads #, which neighbor to get... my moms work # if he can not get daddy on the phone... a lot for a 5 years old to have on his head - plus he just started school....I feel so guilty although I know it is not my fault. he was so scared the other day - Tuesday when I was throwing up at his bus stop when I picked him up - have to walk as I can no longer drive... he thought I was going to have a seizure as that is the first sign.... I kept throwing up and falling down as I was dizzy the whole way home from his stop.... he has been through sooo much in his 5 years here so far w/ me... explant - 2 sinus surgeries... can no longer work...sick all the time.... hospitalization from the seizure episodes, now this mess.... it is all he knows of me now.... I sure hope dr kolb can help as I would love my little boy to know more of his mom than this.... it is so sad.... everytime I think of it I cry. sorry for the

venting.... love to all shari

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

patty

is taking off and we are driving up there - it is an 8 hour trip... we are taking logan and staying for the weekend and maybe taking Logan to a few places up there....

we were thinking of flying but that is such a nightmare anymore.....plus if we are gonna stay for the weekend it will be nice to have our truck. (he gas bill won't be so nice...)hehe

shari