Vertigo

[Guest guest]

Mimianne,

My aunt had vertigo from inner ear problems (note that minocin can cause

this effect on the inner ear in some cases--arthritis can also affect the

ear--I do not know whether it would be position-sensitive if either of

these was the case). I have had vertigo, which coincided with RA flares in

the upper cervical spine. Two possibilities to consider.

I never used to have much vertigo, even when looking over some awesome

cliff-edges while hiking/camping when younger. I find it has gotten worse

as my RA has, and improved somewhat with the AP.

Here is a site I like with a good medical curriculum free online, and they

have just added a great drug info database www.imc.gsm.com (www.gsm.com

for the drug info and 3-D anatomy) and here is a site with a good medical

literature search and image database: www.medscape.com Both are

searchable. You have to register to use both sites, but there is no charge.

Mark also has put up some anatomy images in the rheumatic shared files at

www. I think his were back, foot and hand anatomy diagrams, but

have not checked recently to see if there were more. I also usually have

good results with a search engine like www.dogpile.com, with a term like,

for example " inner AND ear AND anatomy AND image " . Best wishes, Liz G

[Guest guest]

marie, have you tried anti-vert for the dizziness? prescription is

needed....if not why not give dramamine a try. pj

[Guest guest]

Hi, All,

I'm just wondering who else out there has experienced vertigo w. the Lyme.

What helped you?

I was so dizzy, and the room spun so much for a while that I was ill to my

stomach. I needed an anti-emetic (?) in the ER. It's pretty scary.

Would love to hear how you cope w. it.

What does your LLMD say ab. what causes it?

Thanks, and healing to all,

Marie

[Guest guest]

Thanks, pj, I will ask my doc tomorrow. Appreciate it.

Wellness to you,

Marie

On Thu, 18 Oct 2001 PJSNYDERNY@... wrote:

> marie, have you tried anti-vert for the dizziness? prescription is

> needed....if not why not give dramamine a try. pj

[Guest guest]

Just so you know...Antivert is also Meclizine.

Toodles,

Sal

>

> > marie, have you tried anti-vert for the dizziness? prescription is

> > needed....if not why not give dramamine a try. pj

[Guest guest]

> Just so you know...Antivert is also Meclizine.

Thank you, Sal! My PCP told me that's what it was, and we had a laugh

about the name Anti Vert - i.e. get it, Anti Vertigo, ha ha. (I guess

doctors have their brand of humor )

Thanks, and healing to you,

Marie

[Guest guest]

I am also a new member and I had ear infections constantly as a child. Like you I had no symptoms for about 25 years then last summer after a trip to Florida I developed an ear infection. I believe it was from the ocean water. I had a CT scan that showed a cholesteatoma in both ears. I also had my first surgery last fall with reconstruction to repair the hearing at the same time. I only have about twenty percent hearing in my left ear from nerve damage as a child. My right ear is at about fifty percent now. I had vertigo really bad for about eight weeks but it is getting better now. I hope yours gets better soon.

I was going to postpone my second surgery on my left ear because I wasn't having any symptoms and because life is crazy with three kids. Its hard to find the time to rest. But I really think I was just being a chicken!!! After I found this site I have since changed my mind and I am going to set up my surgery date as soon as possible!! May I also recommend to any having their first surgery to sleep sitting up for a few days after the surgery to help reduce the swelling and to purchase a phone amplifier so that you can hear on the phone. They also sell special things for the t.v. so that you can hear it better without blowing out the family. Radio Shack sells a lot of that stuff. You can also get a hearing aid from some doctors as a loaner. They can be costly and a lot of your hearing should return in about eight weeks after reconstruction. I would like to thank everyone for the information you have given me!!! I cant believe that I almost didn't have the second surgery!

[Guest guest]

Hi Carla, When you mentioned the smell that does sound like he might have it. When I went to the Michigan ear institute they did smell my ears and they said that when you have this problem your ears will have an odor. If he can keep his ears dry it will help. He needs to put cotton in his ears then cover it with lots of Vaseline before he takes a shower. I know it may sound like a lot of work but it really has helped me and it does help keep down on the infections. I also was able to have a CT scan while I still had some swelling.

[Guest guest]

That's great!!! They are really great! If you can get an apt. with DR Bojrab, He's good! Iv been to a lot of ent"s and this place seems to know what they are doing. I spent two days in the hospital and one week of recovery. If he has the surgery try not to get the morifien(sorry if misspelled) it can make him very nauseous. Ask for something else if he can.

Are you going to come up to Michigan? If so let me know .

[Guest guest]

I almost forgot about the packing!!!! Nothing like having your head feel like a stuffed bowling ball!

[Guest guest]

hello everyone,

im starting to think this is what my husband has,he has had problems with his ear for about 7 yrs now he went to a specialist few yrs ago who told him he had a polyp and put him on antibodtic,but it never seemed to help his ear doesnt hurt and he has lost some hearing his ear also bleeds and there alot of discharge lately its has ha a very foul smell. and a few times while cleaning he has removed someting that looks like a little worm or flat noodlehe just went to another dr who mentioned this disease but he has to wait till all the swellng goes down to do a ct scan and then go from there,they mentioned maybe surgury if anyone has had this surgury can u tell us if u stayed in hospital? and if u had to miss work?

thanks carla tefft

Re: vertigo

I am also a new member and I had ear infections constantly as a child. Like you I had no symptoms for about 25 years then last summer after a trip to Florida I developed an ear infection. I believe it was from the ocean water. I had a CT scan that showed a cholesteatoma in both ears. I also had my first surgery last fall with reconstruction to repair the hearing at the same time. I only have about twenty percent hearing in my left ear from nerve damage as a child. My right ear is at about fifty percent now. I had vertigo really bad for about eight weeks but it is getting better now. I hope yours gets better soon. I was going to postpone my second surgery on my left ear because I wasn't having any symptoms and because life is crazy with three kids. Its hard to find the time to rest. But I really think I was just being a chicken!!! After I found this site I have since changed my mind and I am going to set up my surgery date as soon as possible!! May I also recommend to any having their first surgery to sleep sitting up for a few days after the surgery to help reduce the swelling and to purchase a phone amplifier so that you can hear on the phone. They also sell special things for the t.v. so that you can hear it better without blowing out the family. Radio Shack sells a lot of that stuff. You can also get a hearing aid from some doctors as a loaner. They can be costly and a lot of your hearing should return in about eight weeks after reconstruction. I would like to thank everyone for the information you have given me!!! I cant believe that I almost didn't have the second surgery!

[Guest guest]

hi thats where they mentioned sending him to mich

we r from toledo ohio

Re: vertigo

Hi Carla, When you mentioned the smell that does sound like he might have it. When I went to the Michigan ear institute they did smell my ears and they said that when you have this problem your ears will have an odor. If he can keep his ears dry it will help. He needs to put cotton in his ears then cover it with lots of Vaseline before he takes a shower. I know it may sound like a lot of work but it really has helped me and it does help keep down on the infections. I also was able to have a CT scan while I still had some swelling.

[Guest guest]

Hi Carla,

Welcome to the group! When I had my surgery, it was outpatient

surgery and I went home the same day. I stayed off work for a week.

I don't know that I really needed to stay home that long medically,

but they didn't remove my stitches until my one-week check up.

How much work he misses will depend on how well the surgery goes and

how he feels afterwards. But like any surgery, be careful and don't

try to do too much too soon.

Good luck and keep us posted on his progress.

> hello everyone,

> im starting to think this is what my husband has,he has had

problems with his ear for about 7 yrs now he went to a specialist few

yrs ago who told him he had a polyp and put him on antibodtic,but it

never seemed to help his ear doesnt hurt and he has lost some hearing

his ear also bleeds and there alot of discharge lately its has ha a

very foul smell. and a few times while cleaning he has removed

someting that looks like a little worm or flat noodlehe just went to

another dr who mentioned this disease but he has to wait till all the

swellng goes down to do a ct scan and then go from there,they

mentioned maybe surgury if anyone has had this surgury can u tell us

if u stayed in hospital? and if u had to miss work?

>

> thanks carla tefft

[Guest guest]

" melissa2541 " <melissa2541@...> writes:

> Welcome to the group! When I had my surgery, it was outpatient

> surgery and I went home the same day. I stayed off work for a week.

> I don't know that I really needed to stay home that long medically,

> but they didn't remove my stitches until my one-week check up.

I was an overnighter, but my op. didn't start until about 2pm, and

lasted 6 hours. I don't remember anything until 10:30pm that evening.

My ENT/Surgeon wanted me to stay house bound for 7 days after the

op. to reduce the chances of me picking up an infection or cold.

In actuallity I didn't return to work for 10 days, due to the pain I

was in. This turned out to be caused by the packing in my ear canal

being too tight against my ear drum. Any post op. pain should only

last a couple of days.

--

Pete

[Guest guest]

Carla,

Whether you stay in the hospital depends on the extent of the surgery and

your doctor. My cholesteatoma had destroyed the bone between the ear and

the brain so they kept me overnight to make sure I had no complications (I

didn't). My second surgery which was just through the ear canal I left the

hospital the same day.

Good Luck!

Jane

>From: " Carla A Tefft " <virgo34f@...>

>Reply-cholesteatoma

><cholesteatoma >

>Subject: Re: vertigo

>Date: Mon, 4 Feb 2002 11:50:37 -0500

>

>hello everyone,

>im starting to think this is what my husband has,he has had problems with

>his ear for about 7 yrs now he went to a specialist few yrs ago who told

>him he had a polyp and put him on antibodtic,but it never seemed to help

>his ear doesnt hurt and he has lost some hearing his ear also bleeds and

>there alot of discharge lately its has ha a very foul smell. and a few

>times while cleaning he has removed someting that looks like a little worm

>or flat noodlehe just went to another dr who mentioned this disease but he

>has to wait till all the swellng goes down to do a ct scan and then go from

>there,they mentioned maybe surgury if anyone has had this surgury can u

>tell us if u stayed in hospital? and if u had to miss work?

>

>thanks carla tefft

> Re: vertigo

>

>

>

> I am also a new member and I had ear infections constantly as a child.

>Like you I had no symptoms for about 25 years then last summer after a trip

>to Florida I developed an ear infection. I believe it was from the ocean

>water. I had a CT scan that showed a cholesteatoma in both ears. I also had

>my first surgery last fall with reconstruction to repair the hearing at the

>same time. I only have about twenty percent hearing in my left ear from

>nerve damage as a child. My right ear is at about fifty percent now. I had

>vertigo really bad for about eight weeks but it is getting better now. I

>hope yours gets better soon.

> I was going to postpone my second surgery on my left ear because I

>wasn't having any symptoms and because life is crazy with three kids. Its

>hard to find the time to rest. But I really think I was just being a

>chicken!!! After I found this site I have since

> changed my mind and I am going to set up my surgery date as soon as

>possible!!

> May I also recommend to any having their first surgery to sleep sitting

>up for a few days after the surgery to help reduce the swelling and to

>purchase a phone amplifier so that you can hear on the phone. They also

>sell special things for the t.v. so that you can hear it better without

>blowing out the family. Radio Shack sells a lot of that stuff. You can also

>get a hearing aid from some doctors as a loaner. They can be costly and a

>lot of your hearing should return in about eight weeks after

>reconstruction.

> I would like to thank everyone for the information you have given me!!!

>I cant believe that I almost didn't have the second surgery!

>

[Guest guest]

I agree with you that sleeping sitting up is a good idea. It does help keep

the swelling down and for myself since they had gone into the mastoid, my

neck muscles were very sore and weak so it was difficult for me to lift my

head. I used my hands for a few weeks after the surgery.

I couldn't handle and hearing aids, head sets or even my eye glasses

(thankfully I wear contacts most of the time anyway) because of soreness

where the doctor took the graft for my eardrum (above and behind the top of

my ear). Whether anyone else would have the same difficulties would depend

on what the doctor did during your surgery.

Jane

>From: karstebecker@...

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: vertigo

>Date: Mon, 4 Feb 2002 11:08:36 EST

>

>

> I am also a new member and I had ear infections constantly as a child.

>Like

>you I had no symptoms for about 25 years then last summer after a trip to

>Florida I developed an ear infection. I believe it was from the ocean

>water.

>I had a CT scan that showed a cholesteatoma in both ears. I also had my

>first

>surgery last fall with reconstruction to repair the hearing at the same

>time.

>I only have about twenty percent hearing in my left ear from nerve damage

>as

>a child. My right ear is at about fifty percent now. I had vertigo really

>bad

>for about eight weeks but it is getting better now. I hope yours gets

>better

>soon.

> I was going to postpone my second surgery on my left ear because I

>wasn't

>having any symptoms and because life is crazy with three kids. Its hard to

>find the time to rest. But I really think I was just being a chicken!!!

>After

>I found this site I have since

>changed my mind and I am going to set up my surgery date as soon as

>possible!!

> May I also recommend to any having their first surgery to sleep sitting

>up

>for a few days after the surgery to help reduce the swelling and to

>purchase

>a phone amplifier so that you can hear on the phone. They also sell special

>things for the t.v. so that you can hear it better without blowing out the

>family. Radio Shack sells a lot of that stuff. You can also get a hearing

>aid

>from some doctors as a loaner. They can be costly and a lot of your hearing

>should return in about eight weeks after reconstruction.

> I would like to thank everyone for the information you have given me!!! I

>cant believe that I almost didn't have the second surgery!

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[Guest guest]

> I almost forgot about the packing!!!! Nothing like having your head

feel

> like a stuffed bowling ball!

No kidding! I had a type of gel foam packing and it gradually

dissolved. I could hear snap-crackle-pop (yeh, just like rice

crispies) as it dissolved. Weird stuff!

[Guest guest]

When I went into the doctors a week after surgery to have the packing removed I expected to have so much stuff come out of my ear! I was really disapointed when hardly nothing came out! I wanted to be able to hear. And I hated that full feeling in my ears.The doctor said it had to disolve. That stuff took forever to go away! Yes i too lived with the rice crispy boys for a while!

[Guest guest]

Dear Crystal,

Hi. I'm sorry I haven't written to you on Lyme Students! I love

getting the posts - just been overwhelmed w. being a student.

Yes, I know the vertigo. I got taken to the ER for it once, where they

gave me dreperitol. (sp?) If I moved my eyes, let alone my head, I

became nauseous and ill. This is totally not fun. I sympathize.

What helped me was a prescription from my PCP for Meclizine (25 mg

tablets) - it's also commonly called " Anti-Vert " (get it, anti-vertigo).

It wasn't clear what was causing mine - the Lyme, or the IV Claforan, so

my PCP prescribed it. I think most Internists will. But I'd relay the

info. to your LLMD if you can - perhaps you are Herxing strongly, or else

having a neuro-kind of reaction to your abx. We think I was having a kind

of neuro-toxic reaction to the IV Claforan, but we're still not sure.

After I got off the Claforan, I had a few more episodes, and then it

all stopped. The Meclizine really helped me get thru it. It worked.

Good luck.

I'll try to write more as I can. You know school.

Sincerely,

Marie

[Guest guest]

What medications are you on? I am Dizzy ALL the time....Lets see what we can

figure out..

Robyn In NJ

[Guest guest]

--- PrincessKiara70@... wrote:

> What medications are you on? I am Dizzy ALL the

> time....Lets see what we can

> figure out..

> Robyn In NJ

>

>

> [Non-text portions of this message have been

> removed]

>

> I took Antivert (Meclazine) when first had vertigo

" episodes " , 14 years ago (not meneires, from lyme-had

microvascular compression of 8th cranial nerve and

vestibular nerve section 8/2000)and now only valium

calms the nerve response enough so I'm not nauseous

ALL the time (dizzy , yes, but took ALL vertigo away

at first). Many Dr's will try seizure med's (for

possible migraine associated vertigo-MAV, which works

like the valium, NO, don't feel anything from valium

but less movement in room spinning). You can get

tests to be sure nothing else involved (ENG) from a

neurotologist or ENT. Still lyme, back on IV

currently.

__________________________________________________

[Guest guest]

Dear Crystal,

You have my complete empathy. It can be terrifying. Let me tell you

my little story, which will perhaps give you a smile or two and also

tell you what worked for me.

I have been infected with Lyme Disease for almost 15 years now. Back

in 1994, while attempting to do yoga, I hit the floor like the

proverbial lead balloon. VERTIGO! I could not tell the ceiling from

the floor, literally.

Fortunately, I landed near the phone and was able to grab it and dial

911. I knew I was near death. I couldn't even lift my head. The

EMT's showed up, but I couldn't move to open the door, so the

apartment manager where I lived at the time had to be found to unlock

the door for them.

Now, all this time, I am lying on my stomach in bright red Dr.

Denton's (it was a cold morning in January up north). In run 5 EMT's

and surround me. They ask me to roll over and I cannot. All the

while I am having two recurring thoughts. One: I am dying. Two:

Is the back flap of my Dr. Denton's open?

The EMT's rolled me over at a great distress for me, and inserted the

biggest IV I have ever seen into my arm. Apparently, they, too,

thought I was dying. This did not encourage me. After they rolled

me over, I was able to open my eyes long enough to see 5 male hunks

hovering over me. When they appeared to be floating on the ceiling,

I rapidly closed my eyes. I was beyond caring about my back flap by

that point . . .

They got me up on a stretcher and off to the hospital we went.

Surprisingly, I was not very nauseated, but I could not open my eyes

because it only increased the vertigo to the point beyond which I

could cope with it.

In the ER, I was given two injections, after several tests to insure

that, in fact, I was going to live and that all major organs were

fine. The injections did not work. Finally, my little country Dr.

arrived and prescribed Antivert. It worked.

Later, I was referred to a specialist who did lovely <joke> tests,

like running water into my ear canal and asking me to list the

Presidents of the United States backwards or some such nonesense . . .

Their diagnosis was BPV - Benign Postural Vertigo. (I know now that

it was of course another manifestation of Lyme, but I was not

educated enough at that point to realize it, though I had been

infected since 1987.)

At any rate, I went to Neurological Rehabilitation and underwent

some more unusual tests, such as standing on a rocky platform with a

huge orange japanese lantern over my head. For some displlaced

cheery reason, the staff had painted the face of a pumpkin on this

giant lantern I was now wearing on my head. And there I was

concerned, that because I could walk and talk and looked so normal

that I might offend some of the more seriously impaired individuals

in the rehab center. HA! Stick a giant jack-o-lantern on anyone's

head and try and get them to balance on an unstable platform and,

well, you just fit right in with the crowd.

The Neurological Physical Therapist did some adjustments with my

head, put a cervical collar on me and told me not to lie down for 5

days. I went home and slept in a chair for the next 5 nights. (I

was a single parent at the time. Ah, such an interesting past we all

share.)

After those 5 days, the vertigo was gone. But the initial experience

was so terrifying to me that to this day I always carry one tablet of

Antivert with me in my pill box where ever I go. I also stay away

from elevators, large ships, second floors of malls (they seem to

sway), high floors in buildings (they sway, too). I have never had

an attack like I did in 94, but ocassionally get that sensation

of " Whoa! Which way is up? " Thankfully, it disappears almost as

quickly as it arises.

One interesting note. I found that I learned to use my eyes much

more than I ever had before in order to focus on the horizon to keep

my balance more stable. I think this is another wonderful example of

how our bodies are able to compensate and adapt, as we go through

these physical changes. I also developed an uncanny ability to

manouver around in the dark, which makes no sense to me whatsoever -

but helpful, as without my contacts I am, in fact, blind as a bat,

anyway!

Well, there you go. That's my story! Rather like Steve in the

movie " The Jerk. " See your LLMD. Try the Antivert. And perhaps see

a Neurological Physical Therapist - they are super at teaching us new

tricks!

All will be well,

..

> I know stuff has been posted on this topic before, but I'm pretty

> desperate for help right now. For about two weeks now, I've been

> having attacks of vertigo (usually with headache, nausea, and kind

of

> roving burning sensations in my head).

[Guest guest]

Wonderful story, ...thanks for sharing the comedy and tragedy of our

affliction. Thank the good Lord for the compensatory mechanisms He gives us,

including a sense of humor.

Warmest wishes,

Donna

" no man ever became wise by chance " Seneca

[Guest guest]

> Carol,

>

> You might want to visit an Otologist to see if the vertigo is

Meniere's

> Disease, which is caused by any one of eight types of Herpes. I

keep my

> vertigo/pain down with Valtrex and Lysine.>>

I have vertigo from time to time. I think it's Lyme-related and not

Meniere's since it is sporadic --a week or two with vertigo, a week

or two without. On the other hand, I also have sharp ear pain, but it

feels as though it is in my ear canals. And I have ringing in my

ears. For mild vertigo with nausea, I take over-the-counter

meclizine (sold as low drowsy formula dramamine). Other times, I use

a walking stick to give myself stability when walking and standing up

from a sitting position.

I plan to discuss this symptom with my LLMD. As I said, I think it's

Lyme-related, but I should not blame everything on Lyme.

Sagwasmom

[Guest guest]

Say, what are valtrex and lysine?

I don't think I've heard of them.

Dora

[ ] Re: Vertigo

> Carol,

>

> You might want to visit an Otologist to see if the vertigo is

Meniere's

> Disease, which is caused by any one of eight types of Herpes. I

keep my

> vertigo/pain down with Valtrex and Lysine.>>

I have vertigo from time to time. I think it's Lyme-related and not

Meniere's since it is sporadic --a week or two with vertigo, a week

or two without. On the other hand, I also have sharp ear pain, but it

feels as though it is in my ear canals. And I have ringing in my

ears. For mild vertigo with nausea, I take over-the-counter

meclizine (sold as low drowsy formula dramamine). Other times, I use

a walking stick to give myself stability when walking and standing up

from a sitting position.

I plan to discuss this symptom with my LLMD. As I said, I think it's

Lyme-related, but I should not blame everything on Lyme.

Sagwasmom