Author Topic: a migraine? survey  (Read 8025 times)

nannettesea

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a migraine? survey
« on: March 29, 2006, 09:13:08 pm »
Nan here-
So three docs are suggesting I may be having a constant migraine without the headache, thus the dizziness...

Has anyone else out there been treated for migraine minus headache?  Recent doc said I'd have to try a medicine for 2 months, and maybe try another....

Just curious.
Nan

1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Battyp

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Re: a migraine? survey
« Reply #1 on: March 29, 2006, 09:54:26 pm »
Hi Nan, what type of medication is he suggesting? 

I've always thought migraines were instense headaches.  Or at least my migraines made my head hurt horribly! 

Captain Deb

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Re: a migraine? survey
« Reply #2 on: March 30, 2006, 10:45:05 am »
Being a migraine sufferer myself, both pre- and post- op (mostly post) I have never heard of such a thing! I started a migraine thread a while back under Post-Op and referenced a really great book I found on them. 
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Nancy Drew

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Re: a migraine? survey
« Reply #3 on: March 30, 2006, 01:23:49 pm »
Nan, Interesting you should bring the migraine without the headache topic.  I have a long history of migraine headaches that was attributed to mostly hormones.  After suffering from migraine headaches for over seven years without response to any of the treatments that were suggested (medication, accupuncture, chiropractor, tai chi, chinese medicine, massage, meditation, and more), I finally sought the advice of a gynocoligist who recommend a hysterectomy.  He said he had treated three of his patients who were nonresponders also.  Other doctors I consulted said he was a quack, but they weren't able to help, so out of desperation I went ahead with the hysterectomy.  To my surprise, and relief, the removal of my ovaries along with estrogen replacement reduced my headaches by 80%.  The other 20% come from stress, changes in the weather, and sinus flare-ups.  So, when I went to the ENT with extreme dizziness that had been going on every morning for over a month, he decided to treat me for an inner ear infection.  After antibiotics, the dizziness was still there.  He then sent me for a MRI, and that is when they found the AN, a small one--4mm x 5mm.  The ENT then sent me to a specialist--by the time I saw him the dizziness had subsided.  He recommended wait and watch since the AN is small, and my hearing test came out normal.  But, he thought the dizziness was not from the AN, but instead from a migraine without the headache.  That just didn't seem to add up to me, but I didn't question it--after all isn't he the specialist!  On and off after my diagnosis of the AN, I was having some typical migraines due to stress, but with no dizziness.  Then last week, three months after my dizzy spells ended, I had three dizzy spells in a row, but this time with the migraine headache.  The dizzy spells didn't last very long however.  With a new medication (Fiornal), I was able to abate the migraine headaches.  But, I have heard that you can have many symptoms without the actual headache.  For instance, my husband had these funky vision problems going on once, and he rushed to the eye doctor because he was freaking out.  The doctor said he was having visual symptoms of a migraine without the headache.  The vision cleared up shortly, and he hasn't experience anything like this since (he had no history of migraine headaches).  I have also heard that you can have an abdominal migraine without the headache.  It is hard to believe, but I guess it could be true.  Still, I have a hard time buying into having dizziness without the headache every morning for over a month.  It would be interesting to hear if anyone can relate to this topic.  Anybody believe the dizziness migraine without the headache instead of the dizziness being a symptom caused by the AN?  Good luck Nan.  Let us know how your situation works out.  Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

nannettesea

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Re: a migraine? survey
« Reply #4 on: March 30, 2006, 03:05:19 pm »
Batty and Capn Deb--yes, you can have migraines without headache, as odd as it sounds.  I'm going to see another neurologist when I get back to WA--have been in MN for two months, one more to go, and my surgeon doesn't want me to start with someone here then switch...so I don't know what medication I'll end up with.  Three docs think the migraine thing is a possibility, so I figure it can't hurt to try.  Though 11 months straight...7 months post-op, I know it's a long shot.

Nancy, very interesting comments about migraine experience.  Hormonal changes, that's new to  me.  For me to have migraine-related dizziness for so long seems unlikely, but as I said above, I'll try anything.  I spoke to another doc last nite, the one I went to for first opinion for AN treatment--he told me to watch and wait because he wasn't convinced my original dizziness was AN-related.  He was the third one who mentioned migraine possibility.

So, I'll keep you posted when I try the medication in a month or so.  Thanks for the feedback/experience.

Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

vcschaub

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Re: a migraine? survey
« Reply #5 on: March 30, 2006, 03:16:47 pm »
My only symptoms prior to being diagnosed with an AN were dizziness and unsteadiness and mild ear fullness. After being diagnosed it disappeared for a few months and then returned and continued right up to surgery. I, of course, had some unsteadiness after surgery, but I am now 5 months post op and the dizziness and unsteadiness are completely gone. I have never suffered from migraines. I believe your dizziness could very possibly be from the AN, not the migraines.
« Last Edit: March 30, 2006, 03:46:27 pm by vcschaub »
6mm
Middle Fossa November 8, 2005
Drs Brackmann and Hitselberger
House Ear

Nancy Drew

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Re: a migraine? survey
« Reply #6 on: March 30, 2006, 05:20:31 pm »
I have also doubted the migraine without the headache theory as far as the dizziness is concerned.  I do believe that having symptoms with no headache is something that is real.  But, to be truthful, I would rather believe the docs migraine theory rather than thinking I am having a symptom of the AN.  I feel lucky to have my hearing, and I just hope that I am lucky enough that the darn AN won't grow.  However, the reality is ,according to the doc, is that it will most likely grow due to my age.  I am 46, and he said if I was 75 or 80 he wouldn't be so concerned with growth.  I have my second hearing test next week, and the second MRI is in June.  In the meantime will continue to receive support from this forum and just take it day by day.  For the most part, I am not freaking myself out as much as I did in the beginning.  I tried to attach meaning to eveything that was happening to me even though it was probably just every day normal things that happen to most people--like tripping over a pair of shoes in the floor or hearing a stange noise.  But, still I know the AN is something I will have to contend with for the rest of my life.  Admire all of you who have shared your stories even though some have been heartbreaking.  Thanks for listening.  Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Battyp

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Re: a migraine? survey
« Reply #7 on: March 30, 2006, 05:45:06 pm »
Nan you can have mirgraines from hormonal surges.  For years before my AN was diagnosed I'd get a mirgraine about 4 days prior to starting menstration that would last almost a week if I didn't take meds before onset.  I have had buggy eye things that were unexplained..wonder if it was as nancy's husband had  migraine symptoms without the migraine?  I've always been a medical marvel  :o

Larry

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Re: a migraine? survey
« Reply #8 on: March 31, 2006, 07:03:02 am »
I am convinced that my debiliatating headaches are tottaly due to the trauma on the scapl and muscles by surgeons focussing on the tumour and not the other things.

I still wait for the magical mushroom cure!

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Captain Deb

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Re: a migraine? survey
« Reply #9 on: March 31, 2006, 10:02:42 am »
Laz--
I know what those headaches are like and you really have my compassion on those--no one knows what they're like 'cept us! Mine start in a single point on the AN side just above the base of my skull and then spread out to the entire incision area and lodge behind my left eye--hence the migraine diagnosis.  If I get my Zomig nasal spray up my schnozz at the first sign--it either knocks it back to a manageable pain level, or it only lasts about 2 hours instead of 12. Have you tried the Zomig yet? I have Imitrex injectable, too, but I hate needles. The pills don't work for me cuz the doc says my stomach tenses up and quits working from the stress.
It's my miracle drug!
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Battyp

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Re: a migraine? survey
« Reply #10 on: March 31, 2006, 10:07:26 am »
Mine pain mgt doc gave me zomig..lived on those little pills.  Just for argument sake:

Have either of you checked your occiptal nerve?  After I was hit by a drunk driver they determined my migraines were due to nerve damage in the occiptal nerve area. I had blocks done to correct it.  It also helped if I laid my head on a phone book edge (something hard and thick) to relieve some of the pressure.  They migraine would start at the base of my skull and go into my eye.  Sounds just like what you are describing Capt Deb. 

Personally I'd come see my pain med guru who has experience with AN sufferers.  Plus he's a cutie!  LOL

Captain Deb

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Re: a migraine? survey
« Reply #11 on: March 31, 2006, 10:51:55 am »
Yes I have--I took it out and inspected it and put it back in!

Oh yeah--occipital nerve entrapment--that's the diagnosis my physical therapist gave me--I saw him 3x a week for 3 months and he worked and worked on that spot.  Headaches are probably from a combination of factors--referred pain, scar tissue from surg, soft tissue and nerve damage from the surgical position, and hereditary migraine. Quaduple whammy!

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Battyp

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Re: a migraine? survey
« Reply #12 on: March 31, 2006, 11:24:33 am »
Dr. Cordner fixed my occipital based migraines...Had them for years!  I'm just thankful I don't have to add migraines on my already extensive post surgical complications list.  I wish I could fix yours! 

Have you tried a tens unit for pain mgt?  It's electrical stimulation.  I had one first prescribed for the migraines and now use it for my feet and face.  It does help with the symptoms..it's like getting massaged on your shoulder/neck area which helps release the muscles.


Captain Deb

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Re: a migraine? survey
« Reply #13 on: March 31, 2006, 12:58:36 pm »
OK--I could say something naughty here, but I won't!!!!
What is a tens unit?
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Battyp

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Re: a migraine? survey
« Reply #14 on: March 31, 2006, 04:06:12 pm »
It's an electrical stimulation unit NO LAZ not to be confused with a toy!  Much different!!!
I got my first one about 10 years ago and recently got a new one as my other one went kapluyey.  My insurance wouldn't cover it and they sold it to me for 50.00.  They gave my brother the same deal.  You put these little pads on your face, shoulders, neck, feet..whatever ails you and it gives you little electric jolts sorta like a masager only you don't have to hold it  lol  It kneeds the muscles in your trap area to release the tension thus providing relief from your headache.  I used them on my ankle to reduce swelling and on my face to help the facial numbness (that hasn't worked yet  lol) 

When you  move in with me I'll hook you up!   :-*