Author Topic: Migraines - here for good?  (Read 6917 times)

Lupy

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Migraines - here for good?
« on: July 25, 2009, 08:37:53 pm »
Hi guys,

Just another quick question. Did anyone on here get really bad, like completely disabling, migraines after surgery that went away with time? Mine started about 2 weeks after surgery and haven't decreased at all. I am begining to get scared that they are here for good! I had retro on the 1/7/09 and am finding that celexbrex keeps them at bay - but of course this drug has its own issues too!


Lupy
“Life is a mystery to be lived, not a problem to be solved” S. Kierkegaard

2.5cm Tumour removed 1/7/2009
Retrosigmoid @ The Royal Melbourne
Debilitating headaches/migraines from 2 weeks post surgery till current.

Syl

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Re: Migraines - here for good?
« Reply #1 on: July 25, 2009, 09:32:18 pm »
Lupy:

My first headache after surgery hit me about two weeks out. It hit me so fast, I had to stop what I was doing. It was debilitating and it made cry. After that I was getting headaches often, usually in the middle of the night or in the morning. They were usually accompanied by sensitivity to light and sometimes with nausea. They didn't seem to be going away--that's why I went to a neurologist for treatment.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

cin605

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Re: Migraines - here for good?
« Reply #2 on: July 26, 2009, 11:18:56 am »
I was getting them pretty bad,I went to headach specialist/neaurologist last month n was put on amnitrityline/migranol
amnitrp. really lets me get a good night sleep but headach continued....i went for nerve block injection last week no headaches so far but ear feels stuffed n my balance has been off for about 3 days.pain shooting down shoulder has dulled.
i would say its a definate improvement not havin the giant migrains.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

Captain Deb

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Re: Migraines - here for good?
« Reply #3 on: July 29, 2009, 12:34:38 pm »
My headaches, too, kicked in at about 2 weeks out and were relentless.  The good news is.....6 years and thousands of dollars worth of drugs, physical therapy and nerve block injections it has gotten much much better.  I don't have daily headaches and am off all headache medications.  I still get a whopper every once in a while and treat it with oral Imitrex and rest.  As far as I can tell they come about every 4-6 weeks.  Mine were so bad I was unable to work and sought and won Social Security Disability benefits.  I am not letting them know I am better as my ability to produce art has been greatly diminished.  Too much activity is my big trigger so as long as I remain relatively inactive I can live a relatively normal life. There is no way I could resume my pre-AN surgery level of work intensity.

I sincerely hope those of you having the kind of headaches I had can follow in my path of getting better with time!

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

jerseygirl

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Re: Migraines - here for good?
« Reply #4 on: July 29, 2009, 01:05:52 pm »
Hi,

I had my first AN surgery in 1988 and a major post-op issue has been intense, chronic and debilitating headaches which doctors refused to acknowledge. They diminished in strength, frequency and intensity after 7 years and went away completely after 10 years. I feel they "ate" the most energetic and productive time in my life - from 25 to 35. They were mostly in the morning, very early, upon waking up or before that. It was very hard to treat them but somewhat  easier to prevent them or abort them as early as possible. I learned to avoid strenuous activity, sleep on elevation and, when the headache hit, take Indocin suppositories because all my headaches were accompanied by vomiting. So, any pill would come right out. Acupuncture, done in a certain spot, by any acupuncturist who could see me right away, relieved the pain, too.

That was years ago and now there are new medications on the market and specialized pain clinics. My advice is not to wait until the headaches will go away because it might be quite some time but take an active role, learn what triggers those headaches, where they are located and try a number of therapies to see if anything aborts them. Some members of this forum even had surgeries for occipital nerve entrapment which relieved their headaches. Best of luck to you. I hope something helps and, please, let us know what.

                       Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

AN-Boston

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Re: Migraines - here for good?
« Reply #5 on: July 29, 2009, 05:04:19 pm »
I have finally found a Dr that has helped with my chronic headaches (2 years post op).  He is a Kinesiologist/ Chiropractor.  My problems seem to stem from my TMJ.  The exercises he has given me have allowed me to finally start reducing my medicine intake!!  Once I get my nightguard adjusted that should improve things even more!!!!

Roger64

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Re: Migraines - here for good?
« Reply #6 on: August 08, 2009, 10:27:05 pm »
Hi Deb,

Here an update on med I take twice a day not to get migraines and it does work but it slow me down mentally.

Topamax
Topiramate
Dichloralphen
Nsaid 500mg
Lyrica
Namenya

Roger

cin605

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Re: Migraines - here for good?
« Reply #7 on: August 09, 2009, 04:25:02 pm »
Roger do you see aheadache specialist/neaurologist?You could try nerve block injections....i jus got my first one last month headaches seem to have subsided i cut down  on alot of meds.I still take tramadol some days n lorazepam.
Alot of the meds seem to cause headach also.
i still have a really strange shooting pain down from left side of neck to shoulder its kind of like i am being shocked,i imagine its some sort of nerve damage.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

4cm in Pacific Northwest

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Re: Migraines - here for good?
« Reply #8 on: August 09, 2009, 05:26:07 pm »
I don't have daily headaches and am off all headache medications. 

Captain- That is great news. I remember when I first started posting and you were really off your feet with headaches and you were writing to us about perscription and insurance woes. There was a time when we did not hear from you and a few of us were worried you had fallen overboard- or something. ;)  No meds at all- that is fantastic news.

DHM  :)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

GeorgiaMei

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Re: Migraines - here for good?
« Reply #9 on: August 10, 2009, 04:35:07 pm »
Lupy:  I hope you find a way to cope w/ the headaches, if you can't make them go away entirely.  Good advise from jerseygirl:

Quote
"My advice is not to wait until the headaches will go away because it might be quite some time but take an active role, learn what triggers those headaches, where they are located and try a number of therapies to see if anything aborts them."

And I can definitely relate to feeling like these symptoms are taking away some of my best years. It's nice to hear someone else say it out loud.   Good luck to you Lupy: I hope you feel better soon.

Roger:  I saw you listed Topamax and wanted to suggest that you ask your doctor about Zonisamide (Zonagran).  I was on Topamax and had to stop it because I couldn't tolerate the side effects, including the sedation.  My pain specialist put me on Zonisamide, which is related, and I found some headache/seizure relief without as much sedation (there's still some).  Good luck to you! 


3.3cm x 2.6cm : Translab resect 3/08
Post-op epilepsy , multiple clots in brain sinuses
Chronic H/A, Facial paralysis, Imbalance, Vertigo
CN VIII removed-deaf in R ear
Received amazing care from Drs. Roberson and Colen at CEI/Stanford (www.californiaearinstitute.com)

Lupy

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Re: Migraines - here for good?
« Reply #10 on: August 10, 2009, 07:20:28 pm »
Hi everyone!

Thanks for the replies. Seems like there is great variabilty with heachaches but in general, with time, they seem to improve, which is good. My doctor doesnt seem very hopeful and keeps just throwing new drugs at me. The latest is Neurontin but I haven't started it as yet as its major side effect seems to be depression and I am already having some issues with that, simply because I am 30 and prior to the operation was trying for children and have now been told not to consider having children (yeah, my doctor is REALLY tactful). Meanwhile I have had some migraine free days (yay!) but mostly I am stuck on the ouch watching crap TV! HOwever, I am trying to be very proactive in researching my headaches (I call it my second PhD) and recording when I have them and how they feel, so at least I have some idea of what triggers etc. Anyway, thanks again for all your help!

Lupy
“Life is a mystery to be lived, not a problem to be solved” S. Kierkegaard

2.5cm Tumour removed 1/7/2009
Retrosigmoid @ The Royal Melbourne
Debilitating headaches/migraines from 2 weeks post surgery till current.

CHD63

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Re: Migraines - here for good?
« Reply #11 on: August 10, 2009, 07:51:08 pm »
Lupy ......

Yeah for the headache free days!  That is a major step in the right direction!!  Keeping a log of when you have headaches, medications taken, foods ingested (including caffeine & chocolate), stress level, activity (exercise), barometric pressure, etc. all will hopefully enable you to see a pattern.

Unless you have some other health issues involved, I do not see why any doctor would tell you not to consider having children because of AN headaches.  I would be extremely careful about which medications you are taking ...... discuss this with an obstetrician before trying to get pregnant.  Hopefully your headaches will soon enable you to go off medication and you can get on with your life!

Thoughts and prayers!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

vjharris

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Re: Migraines - here for good?
« Reply #12 on: August 13, 2009, 04:48:05 pm »
While I haven't had traditional surgery (GammaKnife 12/06) I did have frequent debilitating migraignes with auras which were the reason I got the MRI which discovered my tumor in the first place.
All docs said the migraignes were unrelated to the tumor. After Gammknife (and subsequent tumor shrinkage) the headaches have not occured. (I am almost afraid to say this...in case they come back... LOL)
My theory (and it may be completely wacko) is that anything disturbing the crainial nerves (tumor, stress of surgery, etc.) can cause migraignes.
While crainial surgery might have been your best option, it IS a trauma. Hopefully the symptoms calm down for you and your headaches subside.
Migraignes can be pretty horrible. You are in my thoughts.
2.2x2.37 right side meningioma or acoustic neuroma
Gamma Knife Dec 5, 2006