Hey everyone I used to be on here along time ago and havent had access to a computer for a few years now but all is well and am happy to be back.. The question I have is...Has anyone heard about the new Gamma Knife machine in Spokane Washington? My doctor says it could be my only chance at stopping the headaches at this point.. It is a one shot radiation treatment that targets the area that causes the cluster headache. I was told it has worked for the few that have tried it.. It is expensive of course and my insurance doesnt cover it so THAT SUCKS... Any feedback would be great... Thanks all PFD everyone :)

I'd ask you if you've exhausted all the possibilities yet.

Like this one:

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Personally I have done well with Verampamil and Lithium combo.... also oxygen... I guess my big thing is just trying to rid of them all together... I am pregnant and this time they have not stopped like with my other pregnancy.. it keeps me up all night and I get no sleep.. I am very concerned for the baby's safety because my doctor has me taking 4 oxycodone a day to help with pain and he tells me its baby safe.. Just alot going on and want them gone once this pregnancy is over..I cant take the verampamil and lithium because they are class c and d and could cause birth defects so for now just have to deal...

Personally, I would NEVER agree to be cut on - gamma knife or otherwise - unless I've tried everything else.

I was chronic for about 5 years, episodic for 13 years before that, and now all I do is dose once or twice every 3 to 6 months. Pain free, or as close to it as is possible, for about 2 years now. Much better than 4 oxycodones a day.

Yea I dont like the idea of knives either but this is one dose  of radiation on the nerve that causes them of... so great that you are pain free congrats...I pray it stays that way for you.. when I am done with my pregnancy I will go back to the verapamil lithium mix and be much better too... Thanks for the feedback..

Sher,

With all due respect, you need a new Dr!  Oxycodone is NOT a valid CH treatment.  You said O2 works for you, so what do you need the Opiates for?  Believe me, getting off of the drugs later is harder than dealing with the CH with nothing.  I've been there, and don't quietly watch others go down that road.  I fail to see how Oxycodone is baby safe.  Everything that goes through your blood stream goes through the baby's as well.

As to the Gamma Knife, remember that anything cut cannot be uncut.  There have been more who have not had their CH effectively treated by surgery than have had it work.  Do your own homework before allowing a knife happy or $ happy Dr cut on you.

JMHO

Jerry

I totally agree with Jerry. How can you compare using oxygen to using opiates, especially when pregnant?

And I'd be very, very careful before I had any surgery. For some people who have had similar things done, the CH has changed sides.

I agree 110% with Jerry and Mike.
Please get rid of the Oxycodone.
Cuttting or killing the nerve can cause your face to sag, be numb and droop. (and you'll be ugly for the rest of your life)

Triptans (yes, they are a class c drug)?

From Medscape, a study done in 2010.


Quote:

Conclusion:  No association between triptan use during the first trimester of pregnancy and an overall increased risk of major congenital malformations or other adverse pregnancy outcomes was found. However, it remains possible that a significant difference in the risk of individual or rare congenital malformations exists and more studies are warranted to confirm or reject this possibility. Triptan use late in pregnancy was found to be associated with a slight increase in the risk of atonic uterus and hemorrhage during labor. While it is important to exert caution when using any medications during pregnancy, this study indicates that migraineurs can continue an already established triptan therapy or start using triptans during pregnancy without any major risk of adverse pregnancy outcomes.

Please read this before you undergo this surgery.

Dr. Alan Jacobs, MD


Quote:

This is the Medscape Neurology Minute. I'm Dr. Alan Jacobs. Researchers from the Department of Neurological Surgery at the University of Pittsburgh have published a case series evaluating the outcomes of gamma knife surgery when used for patients with intractable cluster headache.[1] Four participating centers identified 17 patients who underwent this surgery between 1996 and 2008. The median age was 47 years and the median duration of pain before surgery was 10 years. Seven patients underwent previous unsuccessful surgical procedures, including microvascular decompression, with and without glycerol rhizotomy, deep brain stimulation, trigeminal ganglion stimulation, and previous gamma knife surgery. Fourteen patients had associated autonomic symptoms. The radiosurgical target was the trigeminal nerve root and the sphenopalatine ganglion in 8 patients, only the trigeminal nerve in 8 patients, and only the sphenopalatine ganglion in 1 patient. The median maximum doses were 80 Gy. The results showed that 10 of 17 patients achieved favorable pain relief at a median follow-up of 34 months. This was defined as Barrow Neurological Institute grades 1-3b. Eight of 16 patients who had their trigeminal nerves irradiated developed facial sensory dysfunction after gamm-knife surgery. The investigators concluded that gamma knife surgery for intractable cluster headache provided lasting pain reduction in 60% of patients but was associated with a significantly greater chance of facial sensory disturbances, more so than when this is used for trigeminal neuralgia. This article was selected from Medscape Best Evidence. I'm Dr. Alan Jacobs.

Thank you all for the great feedback... as of now I will taper of the oxycodone... I didnt think it was good either but even my obgyn said to keep takin it...I guess rethinkin doctors is going to have to happen... Thanks again :)

Oxy isn't the worst thing you can do to your baby - if it's done as prescribed. But if you don't wean yourself off it now, you'll give birth to a junkie, and they go through withdrawal the same as a grownup. Cranky, cranky baby.

Quote:

my doctor has me taking 4 oxycodone a day to help with pain and he tells me its baby safe..

I'm at a  loss as to how an ob/gyn could say this to you.  If it were me..finding a reputable Dr. would be one of my first priorities. 

Linda_Howell wrote on Feb 25^th, 2012 at 11:38am:

Quote: my doctor has me taking 4 oxycodone a day to help with pain and he tells me its baby safe.. I'm at a  loss as to how an ob/gyn could say this to you.  If it were me..finding a reputable Dr. would be one of my first priorities.

Her doctor may feel that using oxycodone for pain might outweigh any other risks.  Although it is a Class C drug, there have been no indications that, except for the possibility of the baby being born addicted, malformations and other problems have not been identified.

Quote:

except for the possibility of the baby being born addicted,

That would be enough of a "problem" for me.

Linda_Howell wrote on Feb 26^th, 2012 at 11:52am:

Quote: except for the possibility of the baby being born addicted, That would be enough of a "problem" for me.

It is hard enough as an adult to come off something, which I've had to do twice now with tramadol and codeine (both times following a perscription). I can't imagine what it would be like for a baby to go through that.

Sher, think long and hard before you undergo surgery. I did this back in 99 - it didn't work and I am still chronic BUT after the surgery we found a drug that actually HELPED and I've been able to get thru the CH since that time and lead a fairly normal life (I was a mess before).

Sometimes the "last resort" isn't the last resort (as in my case). Today I have paralysis in my jaw and the left side of my face is numb (and will be from now on). Oh I've learned to live with that, but...

So I can only urge you to REALLY think before you act...

And as to the Oxcy - well, I'm with Linda on that one... there has to be something safer for the baby than that. And I'd find it if I were you. Read up on this site and see what's new and what others have done while pregnant.

:-*