Pre-/post-treatment migraines

[Captain Deb]

 Hey Family
Just thought I'd start a thread about migraines and put my migraine (and my neurologist's) theory out there.

Before my diagnosis and tratment(surgery) I had an occaisional migraine--as did my mother.  Migraine disease, according to many researchers, is hereditary.  Trauma and stress of surgery/recovery and associated balance problems kicked my already existing migraine "mechanism" into overdrive.

There is a great book called "Understanding Migraine" by Stewart J. Tepper, MD--available thru Amazon.

I had my first full-blown Migraine 10 days after surgery--I was at my cousin's in LA--my sweet hubby had just flown home to NC leaving me there to recouperate--very stressful to have him leaving.  The pain was so bad my cousin was really freaked out.  I talked to Dr. Friedman, my surgeon the next day (when I could talk again) and he said I had had a migraine.  I had NEVER had one like that before.

These buggers continuously got more frequent until at 9 months post-op, I was in worse shape than just after surgery. Trips to the emergency room were a regular thing. Forget about working at all. I was having them 2-4 times a week--some of them lasting 2 days.  The doc put me on Topomax--which had awful psychological side-effects and then Inderal, which I stayed on for over a year.

These weren't just those exertion headaches that a lot of us get, although some of them started out that way.  They are distinctly one-sided and accompanied by extreme nausea and light-and sound-sensitivity.

I used Maxalt, Relpax, Imitrex (pills) and it was hit or miss most of the time.  The doc finally prescribed Zomig Nasal spray (don't know what took him so long to do it) Which actually works most of the time.  I still have to combine it with Compazine and Vicodin, but I can get relief in 2 to 4 hours and haven't had to go to the emergency room once since I found this "cocktail."

My experience leads to some advice to those sitting on the fence between surgery and radio-surgery.  If you already have hereditary migraines, seriously consider a less invasive proceedure if possible.

That's my story and I'm sticking to it.
Thanks for reading

Captain Deb

[ppearl214]

Hi Cap't Deb.

Oh, geeze... our lovely migraines. Have been getting them "time o' month" for years... but had a LONG discussion with neuro yesterday and this came into our discussions.

He was trying to tell me the food-based reasons and hormonal reasons for the migraines.   Told me that meds such as Imitrex and Tramadol are more for immediate relief, but then, when they occur again after using these meds, they tend to come on "stronger". Then, use same meds again and then, again... they come on even stronger!

saw a report on local tv news this morning for a new migraine med that dr's/researchers hope to have FDA approved next year. Seems to be a combo of Imitrex and Naproxyn (Aleve)...my local tv news reported it this morning and trying to find a good link to post here. Seems they also want to manufacture it in patch or nasal form. Will see if I can locate the link.

thanks for sticking to it. Aye-Capt'n!

Phyl

[millert]

Thanks for info on ABC. Having been on ever increasing doses of class II narcotics, I found the article interesting. I also read the related articles as well. The new non-narcotic drug sounds promising. However, I am very pessimitic about that. It seems every drug has side effects and some are present problems that just compound the migaine headaches. I had for about a year and half suffered with daily headaches. Bedridden for days on end. I was referred to a well renowned Neurologist at a University. He prescribed Oxyfast. Wow!! It gave me relief from the severe pain. I now take the slow release oxycontin and that subdues the pain. It really does not help with the light sensitivity or noise. But at least I can do things for a few hours a day. Three times in that year and half I tried taking my life, the pain was so bad. Locking me up for a 72 hour hold was a torture-- the nurses didn't understand my headache problem. Anyway I am willing to try anything if it will help stop these headaches. By the way, this doc says that about 10% of AN surgeries have the side effect of headaches. Sometimes they go away or decrease, but for about 1% they will never. He just tries to provide relief

[Captain Deb]

Hey Miller
Sorry to hear about your headaches--I considered that "out" as well in the midst of a couple of whoppers.  They are unbelievable aren't they?
I didn't even feel human during them--just like some kind of howling animal.

What treatment did you have, how big was your AN, how long ago and where?  If you go to the "profiles" section of this site you can log in your particulars--treatment method, date Docs and such--it gives us other posters a frame of reference on you.

Has your doc ever prescribed any migraine preventatives?

I really thought I was stuck with these sunsa beaches for the rest of my
life then they just began to taper off at about 2 1/2 years. I still get 'e but they are managable.

Good Luck and hang in there
Captain Deb

[Larry]

Hi Miller,

There is another thread called headaches where a number of posters have given their thoughts. I am battling debilitating headaches for 3.5 years now (all post op). I never had a headache before. My ent surgeon told me its a combination of a lot of things but also the way the muscle and the scalp is cut and sewn back. I guess their main focus is the tumor but still, it would be nice to not have these rotten headaches.

keep trying different things. This forum is great to vent your anger at what you are going through. We are all here for you.

Larry

[millert]

Thank you all for your words of encouragement. My wife and I got up this morning to drive the 110 miles to San Francisco. Left at 5:30am Got to UCSF @ 9:05. Wife was told they would not be able to see me because we were late. Oh this is for a auditory exam of left ear (good side). My head was pounding but the audiologist came and we did the "tests". I felt very rushed, as I was raising my hand to indicate I heard the beep two more beeps would sound in rapid fire. I think all told test took maybe six seven minutes. I was supposed to see my doc later around 10 but he rescheduled two weeks ago because of an emergency. I see him next week. Tests showed my hyperacusis has increased yet my hearing loss has remained about the same as last test. I never have felt more dillusioned and down. Nobody seemed to care about our struggle to get there, only that because of our arrival  they would be playing "catchup". I left a scathing voicemail with my doc. It took us another two hours to get back home. We have to go back to UCSF on Thursday for an appt. with my neurologist for the headaches and some pre-op tests to have my BAHA removed. I hope we don't have the same treatment.

[ppearl214]

miller, after the day you had today, I'm pouring you are dirty martini. I think you and your wife earned it. I'm so sorry your day was not good. 

Phyl

[Sherry]

I have suffered from killer migraines since my son was born 24 years ago.  They have changed in frequency and intensity over the years, at some points coming fast and furious and lasting 2+ days, other times yielding to the migraine medicine du jour, currently Zomig 5mg.  The first thing I asked my doc after hearing I had an AN was, "Is this the cause of my migraines?" hoping something good might happen as a result of a brain tumor.  Sadly, every doc I 've talked to says the same thing - the two are not related.

I am glad to have the information that headaches can be a side effect of surgery.  I am not willing at this point to take that risk, having lived with that pain for 24 years.

I hope you find some relief.  Zomig has been a saving grace for me.  I don't leave home without it.  I can ward off most migraines within an hour if I take the pills soon after I realize its a migraine.

Good luck and best wishes.

Sherry

[targa72e]

I never had a migraine in my life until about a year ago. I get the visual aura before the migraine (at least I have some warning). Some have been worse than others. Since I did not have a migraine my entire life and they started 3 months before I was diagnosis with a AN I have to think they have to be related. They have increased in frequency over the last year with the highlight being 3 in one week in February.


John

5mm rt. side watching

[Larry]

John, spot on they are definitely related - unfortunately. I have had mine for 3.5 years and no respite. A real bummer