I feel like I'm on a Carnival ride......

[Melissa778]

THe last few weeks my "dizziness" and lightheded-ness has seemed to get worse.  THere are days where I feel like I am on a Carnival ride....sometimes to the point of nausea...my regular doc just keeps prescribing different things for me to try....all of which make me extremely tired.  I work full time and have two small children....I can't sleep every day away.  Anyone else have these difficulties?  I'm beginning to occasionally have to hold on to walls when walking....I fell down some stairs last week and broke a toe due to balance and dizziness.  My AN is at 1.7 cm and my docs are telling me to watch and wait since I really have no hearing problems at this point.  I'm beginning to become impatient with waiting and watching....the balance and dizziness issues are affecting my quality of life, but I have yet to find a specialist that I like and want to continue seeing, I'm getting great resistance from my insurance company on more referrals.  I see a specialist at Michigan Ear Institute tomorrow.....hoping all goes well.   In the mean time, anyone have any advice for to help me get off the carnival ride???

[Brendalu]

Daydreamer,
I was falling and dizzy all of the time and my hearing was perfect.  I had the surgery and lost my hearing in my right ear in hopes I would gain my balance and not be dizzy.  I too have taken every medication possible to no avail.  I don't know what the answer is for you, but hopefully, you will find it when you have your appointment.  I'm still dizzy and no balance and it has been 32 months for me since surgery.  I know others who haven't had that problem and get back on track very quickly.  My thoughts and prayers are that you do too.
Brenda

[leapyrtwins]

Daydreamer -

I'm not a doctor, but IMO if you are having symptoms like the ones you describe, watch & wait might not be the best option for you.  Also the fact that your AN is 1.7 cm makes me curious as to why you would watch & wait, since it is my understanding that this is about medium size.

I urge you to find a doctor or doctors you are comfortable with before making a treatment decision, don't let your insurance company bully you into anything.  It is vital that you find someone with the qualifications, as well as the experience, to treat you.

I'm hopeful that you will have a good consultation tomorrow with the specialist at the Michigan Ear Institute.  If that doesn't work out, I have an excellent doctor here in Illinois - not too close for you, but not too far either.

BTW, I had dizziness and balance issues for a few weeks post op but after that they went away, never to return.

Best of luck,

Jan

[NW]

Daydreamer,
With an AN 1.7, why would you wait? Get it out !! Did you try Dr. Welling at Ohio State? I have nothing but praise & trust for the man. I'm sure your symptoms are different from mine, but I just know that with me, even though mine was 1 cm, I wanted out before it grew any bigger to cause problems. Let me know if I can help in anyway.

Nancy

[Melissa778]

Believe me, I want the booger out.......just trying to find the "right" doctor to do it.  My insurance won't allow me to go to Dr. Welling.....They wont' allow me to go to Cincinnati to see Tew & Theo......They have finally approved for me to go see a Dr. Kartush at Michigan Ear in the Detroit, MI area......According to Dr. Pensak and Theo at U of Cincinnati he's supposed to be great, the next best thing to them......I go see him tomorrow......Hoping they can help me get the booger out soon and hoping they are "qualified" and I just hope I make a good connection and feel comfortable with them.  Not sure how much longer I can stand the "spinnies"........I will not be going to Cleveland Clinic.....With a 1.7cm, near my brain stem and the symptoms I have they are encouraging me to wait until hearing becomes an issue.....At this poitn the dizziness worsens daily....my thought is the hearing loss can't be too far behind.  I've been dealing with all of this insurance crap and I've been shuffled from this doctor to that doctor....alll since January, and I still feel like nothing has been decided or "resolved"......I think the frustration certainly isnt' helping the carnival ride I'm on......I couldnt' even sit up right on Friday because I was so dizzy.  Wehn I called my regualr doctors office they told me to go to the ER because they could do nothing for me.  I went to the ER where I saw and ER doc who had never met anyone with an AN, needless to say I was the ER Phenomenom of the day....after a valium script they just sent me on my way as I knew they would.  I just pray tomorrow goes well.

[ppearl214]

Hi Daydreamer,

It is my understanding, based on many conversations with many docs treating AN's that if you are symptomatic of typical AN symptoms, treatment options (ALL options) are to be considered.  If the AN is pressing on the brainstem, another good reason to have treatment done.....

As we all know, treatment decision is of personal nature.... so, none of us can tell you which treatment choice to do.... you and your physcians know best as it is a highly personal choice.

FYI... there are vestibular movement/exercises you can do if the meds are not working.... many here can share (including myself) as they have been tried and true.

I know you are having a difficult time. Sounds like you are investigating all avenues that work best for you.... and know we continue to support you.....

(btw, I've never been one for carnival rides....)

Hang in there!
Phyl

(guess everyone is using my term now, regarding what's in our head, eh?  )

[JeWeL41]

I can't help I'm afraid but I can certainly sympathise. I've had vertigo for almost two weeks now and I mean the spinning, carnival ride type too! You are right about the medication it does make you sleep, especially if you are injected with it! I don't have AN but I do have all the symptoms which it seems may be caused by a vascular loop (fingers crossed this will be confirmed). I nearly gave in today when I saw a walking stick in a shop but my husband didn't let me!!!

God knows how I'll cope when we go to Disneyland in August, hopefully it will have stopped by then. Hope you are pleased with the surgeon and all goes well - it's easy for me to say but I would get it removed though I know this is a scary thought.

Which medications have you tried? I was taking Betahistine for 15 months and did not have a big attack of vertigo or any apparent side effects. I stopped taking it because I had been on it so long and GP thought we should see what happened if I did! The vertigo started about a month later and now I am on stemitil but staggered by the side effects which can include ....dizziness! I've also found that my tongue is numb so I'm going to ask for a stronger dose of Betahistine. Loads of luck for your consultation, my thoughts will be with you.

[cindyj]

Hi Daydreamer,

I know JUST how you feel!  My vertigo/dizziness/carnival ride started about six years ago and was dreadful for several months.  I was on Antivert for quite awhile and tried the excercises as well - to no avail.  But I eventually "learned" to live w/ it - I think I know now that my brain just eventually compensated for the balance troubles...I have only recently been diagnosed w/ a small right sided AN, but now realize that it was probably what caused my troubles back then.  I did not pursue further testing until 2 years after my tinnitus started and have just now discovered this AN.  Anyway, I completely sympathize w/ what you're going thru and wish you the best in getting some relief.  I am also still trying to figure out what treatment is best for me.  Will be watching to see posts of your progress/decision.

Take care,

Cindy

[hendi51]

My husband is also watch and wait and he has dizziness, balance issues, nystagmus and 82% hearing lose in left ear. He has fallen several times, and walks with a cane to help balance. Makes no sense to me.

[Kaybo]

Daydreamer~
I can't really say anything about BEFORE surgery, but I can tell you that I still have balance "issues."  However, NOTHING like what you are describing!  I can only hope & pray that it will get better for you once you get the AN removed.  Maybe once you can have more peace about a surgeon and get a plan of attack down, things will lessen -- let's hope so!  Good Luck tomorrow - I will be praying that this will be the one for you!

K

PS - I always have & still LOVE all rides -- especially crazy rollercoasters!!  The only exception being this summer when I was riding the Tilt-a-Whirl and the operator muxt have lost count or zoned out and kept it going WAY TOO LONG!  My friend's mom was on it too and she had to leave the park sick!!  It was AWFUL!!!