new migraine treatment

http://www.wfaa.com/news/health/New-hope-for-migraine-sufferers-85239122.html

Sounds scary, but I'm desperate.

I don't know...

I tried the occipital nerve block and it made me feel worse!! And that wore off after a few days. I don't know about implanting something.

Too scared. I'd wanna see lots of successful clinical trials first.

What they don't tell you is that none of the neurostimulators are FDA approved for Migraine treatment yet.

Teri

Of course most migraine preventives are not FDA approved for migraine prophylaxis.

(The following article is about an year old- things change of course. . . ):

http://headaches.about.com/od/treatmentoptions/a/rxprevention.htm

You know what, it is scary what us migraineurs do for our situations. I am going in for a PFO check and if I do in fact have it I might concider having the surgery to repair it on my HEART. It is a moderately invasive surgery but I am 22 and am concidering having people go in and screw around with my HEART! There are close to no studies on this, only two have been done and they both have been small groups, under 1,000 people...about 500 who actually had the surgery done.

I also have great interest in the face-lift surgery but it is far too expensive for me and obviously insurance won't cover it.

I am THAT desperate. We as hurting people will do anything to make the pain stop and that says a whole lot for this problem we all suffer from. It is a sad thing but we are in the same boat.

Yes, but something that includes an invasive surgery seems different to me.

Teri

Anna wrote:Of course most migraine preventives are not FDA approved for migraine prophylaxis.

(The following article is about an year old- things change of course. . . ):

http://headaches.about.com/od/treatmentoptions/a/rxprevention.htm

I hear you!! I've been there. When I posted about neurostimulators not being FDA approved, it was just for information, not to talk anyone out of trying it.

There's a woman I'm trying to find help for now. She had a stimulator implanted. Her doctor "fudged" her diagnosis to get her insurance company to pay for it. She lost her job and her insurance. The leads slipped from the stimilator, so it no longer works. With no insurance, she can't get the doctor to fix or remove it.

I just want people to have all the info possible before pursuing surgical options.

On the plastic surgery -- have you had Botox? If so, did it work? The plastic surgery only works for those for whom Botox works.

Hope this both helps and explains where I'm coming from.

Teri

lovegia wrote:You know what, it is scary what us migraineurs do for our situations. I am going in for a PFO check and if I do in fact have it I might concider having the surgery to repair it on my HEART. It is a moderately invasive surgery but I am 22 and am concidering having people go in and screw around with my HEART! There are close to no studies on this, only two have been done and they both have been small groups, under 1,000 people...about 500 who actually had the surgery done.

I also have great interest in the face-lift surgery but it is far too expensive for me and obviously insurance won't cover it.

I am THAT desperate. We as hurting people will do anything to make the pain stop and that says a whole lot for this problem we all suffer from. It is a sad thing but we are in the same boat.

i do not know anything about stimulators and did not have the botox inj. yet. still thinking about it . but i did have facet (sp?) nerve blocks and occipital nerve blocks at Mich. Headpain and Neuro. inst. lot of pressure during procedure. but not that bad.
did not work for me. went in with a M. and still had it later. no relief except for a little sedation med. from the procedure. that is my experience with blocks. is pfo a "hole" in some part of your heart? my primary mentioned that idea to me before and i brought it up at MHNI but no interest from the drs. there. seems to be some data that it can be helpful to those with that condition and migraines. this is only what i heard not a science based opinion. just asking.
rose

Rose,

A PFO is a hole in the wall between the two chambers of the heart. For some people, a PFO can trigger some of their Migraines by allowing unfiltered blood to get back to the brain. PFO closure can prevent those Migraines for some people, but it can't prevent Migraines brought on by other triggers.

There have been clinical trials done closing the PFO. Results haven't been anywhere near as good as expected, and most of the trials have been discontinued. At this point, the FDA hasn't approved PFO closure for Migraine treatment, and with the trials discontinued, I don't know that they ever will. There are a few doctors who recommend closure anyway, but insurance companies aren't covering it. Here are some links for information:

• PFO and Migraine - "Hole in the Heart" and Migraine?
  
• PFO and Migraine - What the UK MIST Trial Showed

Hope this help!
Teri

dailyha-rose wrote:i do not know anything about stimulators and did not have the botox inj. yet. still thinking about it . but i did have facet (sp?) nerve blocks and occipital nerve blocks at Mich. Headpain and Neuro. inst. lot of pressure during procedure. but not that bad.
did not work for me. went in with a M. and still had it later. no relief except for a little sedation med. from the procedure. that is my experience with blocks. is pfo a "hole" in some part of your heart? my primary mentioned that idea to me before and i brought it up at MHNI but no interest from the drs. there. seems to be some data that it can be helpful to those with that condition and migraines. this is only what i heard not a science based opinion. just asking.
rose

Teri,

I know you weren't trying to talk anyone out of anything, your just keeping us informed Thanks for all the info! I was just trying to relate to all the crazy things we think about to fix our heads but the main thing is we all need to go back to the research and really pay attention to what we are concidering. It's great to have you here to give us the facts!

Diamond Headache Clinic participated in a nerve stimulator study for migraine:

http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=14932

http://www.sciencedaily.com/releases/2006/09/060927201140.htm

[quote="TeriRobert"]

There have been clinical trials done closing the PFO. Results haven't been anywhere near as good as expected, and most of the trials have been discontinued. At this point, the FDA hasn't approved PFO closure for Migraine treatment, and with the trials discontinued, I don't know that they ever will. There are a few doctors who recommend closure anyway, but insurance companies aren't covering it.

[quote]


That was what I thought, Teri, but as I am never 100% sure if I am up to date with the latest research, I didn't want to question anyone's decisions. It's so eye-openeing to know that despite how poorly it has done and MOST docs/insurance companies rejecting it for Migraine treatment/Stroke prevention, there ARE some docs obviousely still suggesting it.

I believe originally they said only migraine with aura people were eligible.
I have two very well known friends (entertainers) brothers who had this for the PFO itself, but both being migraine people they did notice an improvement. Sadly they didnt go away. Their family has a big migraine problem in at least 2 generations.

I think it has fizzled out here in England as well.

P

Teri,

Heads up, I have sent you a PM for a bit more info on PFO if you don't mind. Thanks so much!

Also Jess, I sent you a PM SOOOO long ago! Did you ever get it? It is in my sentbox but I know the forum eats messages. If not let me know, I'll resend.

Pen, did your friends' brothers have migraines with aura? From what I have read the PFO treatment..for whatever reason, does help people with aura significantly more but I got that info from independent studies not bigger clinical ones. I'd love to know all the info I can on this stuff because I'm going in for a check on it myself. I don't know about getting it fixed just for migraine but if I were having TIA or strokes I'd certainly concider it and hey, if it fixed the miggies..man wouldn't that be great?!

A few stories to share:

My husband's former office assistant (young) had cardiac problems and very bad migraines. It was learned she had a PFO. She had the procedure to repair the PFO because of her cardiac problems. The wonderful result--she has no more migraines. What a blessing.

I have a friend whose daughter did a nerve stimulator trial for her intractable head pain. She didn't have Botox injections to see if she was a good candidate. The pain doctor didn't require that. The nerve stimulator trial was not successful. The pain doctor implanted an intrathecal pain pump. That has been successful.

Anna has been approved for an intrathecal pain pump. She could try a nerve stimulator first, but I don't think it would help much since she has such variance in her head pain.

I know these aren't FDA approved for head pain, but sometimes you are between a rock and a hard place. Where you've been stuck for years and years... with a terrible quality of life.

Cheryl

Hi,
I just wanted to say that I am going through the process of trying to have this Occipital Nerve procedure performed. I am in England so have to apply for funding and may not get it anyway. As you say it is scary but when you are desperate....(and I know I don't need to say that to anyone here!)
I am trying to find out as much as I can which is very difficult as there is not a lot of information about. Anyone that wants to talk about it I would be very happy to.
Take care
Alison