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Topic: occipatal stimulator for trigeminal nerve (Read 653 times) |
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jacks920
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occipatal stimulator for trigeminal nerve
« on: Jan 8th, 2006, 4:38pm » |
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Have suffered from clusters for 9 years. Just had surgery 5 weeks ago to remove vains wrapped around trigemial nerve that they thought might be causing headaches. It didn't work.
I take verapamil and Amerge everyday and Imitrex for when headaches start. I can have up to 8 a day, but right now, as long as I take the Amerge I'm down to 1 a day. Just started on Amerge and it seems to help but it's very exspensive.
Now they want to implant a occipital stimulator that blocks the pain to the trigeminal nerve. Anyone tried that yet???? Let me know. Thanks, Jacks
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E-Double
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Re: occipatal stimulator for trigeminal nerve
« Reply #1 on: Jan 8th, 2006, 4:43pm » |
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on Jan 8th, 2006, 4:38pm, jacks920 wrote:Have suffered from clusters for 9 years. Just had surgery 5 weeks ago to remove vains wrapped around trigemial nerve that they thought might be causing headaches. It didn't work.
I take verapamil and Amerge everyday and Imitrex for when headaches start. I can have up to 8 a day, but right now, as long as I take the Amerge I'm down to 1 a day. Just started on Amerge and it seems to help but it's very exspensive.
Now they want to implant a occipital stimulator that blocks the pain to the trigeminal nerve. Anyone tried that yet???? Let me know. Thanks, Jacks |
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I haven't had this done nor do I think I would ever, even with chronic clusters.
Even with days that 10 attacks come my way.
Nope!
Anyway the biggest thing that caught my eye was the mixing of triptans.
You take Amerge as a preventative then use Imitrex as an abortive.
That could be a death wish!!!!
Do not mix triptans!!! That is rule #1
Did your doctors perscribe it this way?
Are they the same docs that want to perform more brain surgery?
If it were me I'd do some more research and look for a new doctor.
Best,
Eric
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jacks920
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Re: occipatal stimulator for trigeminal nerve
« Reply #2 on: Jan 8th, 2006, 5:08pm » |
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Hi E-double,
Why is Imetrex and Amerge a death wish? My doctors never said anything about mixing the two, and so far it's been working for me. Are you a doc?
Also, the doc that did the surgery is not the same doc that I get the meds from. Two different neuros. I have had some of the best docs in the northwest.
Please let me know what you mean by rule #1, never mix triptans. Thanks for the info, Jacks
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E-Double
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Re: occipatal stimulator for trigeminal nerve
« Reply #3 on: Jan 8th, 2006, 5:51pm » |
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http://www.drugs.com/mtm/a/amerge.html
Essentially you risk having a cardiac event.
Amerge is a 2nd generation triptan and imitrex is a 1st.
Having different half lives will effect how long stays in system and you could wind up constricting the vessels to the point of heart attack.
Others will be around later with specific research.
It your medication pamflet it will tell you not to mix within a 24 hour period
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BarbaraD
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Re: occipatal stimulator for trigeminal nerve
« Reply #4 on: Jan 8th, 2006, 6:36pm » |
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I'm not sure what type of surgery you had. In 99 I had a Stereo-Tactic Radio-Frequency Trigeminal Rizitomy - Basically they microwaved the trigiminal nerve. It didn't work, but has on some (my chances going in were 80/20 - I'm just not a good gambler I guess).
There's a nerve stimulator out for epilepisy that uses a magnet (don't know what it's called) that's working real well for that. There's some talk about trying it for CH, but I don't know if anyone has done this procedure - haven't heard if they have. They were doing it in Houston somewhere. I got the literature on it years ago, but never followed up.
Listen to the guys about the triptans. There have been several on here who have developed heart problems.
One thing you'll find on this MB is that you will get some really good advice from people who've been there and done that or have done their research really well. We all try to watch each other's backs.
Have you tried O2? It seems to help most of us more than most drugs.
Wishing you PF days....
Hugs BD
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BK
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Re: occipatal stimulator for trigeminal nerve
« Reply #5 on: Jan 8th, 2006, 7:20pm » |
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on Jan 8th, 2006, 4:38pm, jacks920 wrote:
I take verapamil and Amerge everyday and Imitrex for when headaches start. I can have up to 8 a day, but right now, as long as I take the Amerge I'm down to 1 a day. Just started on Amerge and it seems to help but it's very exspensive.
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Wow! I can't imagine the vasoconstriction that would take place using amerge and up to 8 imitrex a day. Even a young, healthy heart couldn't like that. I would seriously question the dr. on this.
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Gator
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Re: occipatal stimulator for trigeminal nerve
« Reply #6 on: Jan 9th, 2006, 12:34am » |
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Well, to thoroughly beat a dead horse:
Quote:DO NOT MIX TRIPTANS
Maxalt (rizatriptan), Zomig (zolmitriptan), Imitrex (sumitriptan), Amerge (naratriptan), Relpax (eletriptan), Axert (almotriptan), Frova (frovatriptan) and meds containing ergotamine are dangerous to take within 24 hours of each other. Mixing triptans can cause serious cardiac problems. If you switch from one to another, wait at least 24 hours between the two different meds. |
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LeLimey
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Re: occipatal stimulator for trigeminal nerve
« Reply #7 on: Jan 9th, 2006, 5:33am » |
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A couple of people in the UK have had it done, you could post on the OUCH UK support board for more info on their personal experiences.
http://www.clusterheadaches.org.uk/cgi-bin/yabb/YaBB.pl
I know in neither case has it stopped attacks however. This is still experimental surgery. Think very carefully before you go ahead. Whilst I know someone always has to be 1st, 2nd, 3rd or even 10th several of these op's have been done for migraine and by now I'd be expecting to see better results in all honesty. To go through risky surgery and still be getting hit..
Try everything else first.
www.clusterbusters.com - you might be pleasantly surprised!
Hope this helps a bit
Helen
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Beastfodder
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Re: occipatal stimulator for trigeminal nerve
« Reply #8 on: Jan 9th, 2006, 5:49am » |
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Totally agree on exhausting all options before surgery.
I'd also be very careful on mixing triptans - they really could be the death of you. It is possible not just to exist through Cluster headaches but to beat them.
As Lelimey says have a look at the clusterbusters website. With O2 and clusterbusters I managed to abort conventional pharmacy like triptans and swapped a 50 plus headache cycle over 10 weeks in '04 with 4 headaches in the '05 headache cycle.
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AllanP
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Re: occipatal stimulator for trigeminal nerve
« Reply #9 on: Jan 9th, 2006, 5:50am » |
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Yep had it done in July 05. If we are talking about the same thing. A wire is inserted into the back of your head and threaded through under the scalp unil they hit the Trig nerve. The wire is attached to a remote control that you manage to adjust the voltage. It is supposed to overload the nerve so no pain gets through.
Mine didn't work. Docs couldn't place it in the right spot, so they said. They couldn't say why that was.
Afterwards two Neurologists and my own great GP told me they did not expect it to work.
Another specialist I saw wanted ti kill the nerve with radio thiny but after several injectable nerve blocks the pain ruturned. He said the nerves can reroute themselves so the pain will still come. So maybe the Trig nerve isn't as important as some think????
Good Luck
AllanP
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Bob P
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Re: occipatal stimulator for trigeminal nerve
« Reply #10 on: Jan 9th, 2006, 5:57am » |
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Jacks,
Dr. Dodick at the Mayo in Scottsdale, AZ has been experimenting with the occipital nerve stimulator. He could give you some numbers on success rates.
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StressFree
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Re: occipatal stimulator for trigeminal nerve
« Reply #11 on: Jan 9th, 2006, 11:27am » |
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I'd try using the TENS unit (transcutaneous electrical nerve stimulation) first. Chiropracters often use a similar device on the back and the back of neck. Orthodontists and dentists have used them on the jaws/cheek/and ear lobes to treat TMJ. I got one in a yard sale. You can get any of several brands online for around $100. It mostly effects nerves and muscles close to the skin, but I'd be careful and avoid putting it across the front of neck or chest just in case. I've used it from temple to jaw, and across the back of my neck and shoulders to reduce and, I believe, often abort cluster attacks. You can vary the intensity and frequency. Often during a bad attack I'd crank it up until my jaw was jumping involuntarily to the pulse of the TENS unit - at that point it was more of a distraction than anything. I also would vary the intensity and frequency, as additional distraction. They say in the advertisements that it interupts the nerve paths and helps generate endorphins in the area needed. Often they are used for chronic pain. I've found it to be a good supplement to everything else in the battle against cluster attacks. Best of luck, Rich
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LeLimey
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Re: occipatal stimulator for trigeminal nerve
« Reply #12 on: Jan 9th, 2006, 11:35am » |
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Rich I'm glad you were able to use Tens, I tried it out as I have a tens machine for back pain and I consider myself lucky that I didn't kill anyone when I ripped it off and threw it. It was awful for me (which just goes to show we are all different) so I would strongly suggest anyone wanting to try it borrows one from a friend or ask's their doctor if he can borrow one before laying out the money for something that could be no help whatsoever.
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StressFree
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Re: occipatal stimulator for trigeminal nerve
« Reply #13 on: Jan 9th, 2006, 12:47pm » |
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LeLimey,
always good advise to try something out if it's going to cost you significant investment. There are others who have posted that TENS has helped them out (Barry_T_Coles) was one recently, meds board-TENS topic. I know many have said they would throw it across the room too. Yes, we are all different. I've been willing to try about everything though. Sometimes more than once too. Trying something new in the middle of a KIP 9 or 10 isn't a good idea either. Take care, Rich
Edited to note Barry posted TENS helped some...
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RichardN
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Re: occipatal stimulator for trigeminal nerve
« Reply #14 on: Jan 9th, 2006, 2:36pm » |
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Hi Jacks and Welcome
I can't take triptans at all (arterie blockage and high cholesterol). My doc (correctly) ordered a stress test before prescribing Imitrex. The test did show blockage, so then did a heart cath (which nearly killed me) . . . not enough blockage for stint, but definitely ruled out the Imitrex.
I use 02 and only 02 to abort . . . . WONDERFUL for those of us it works for (about 70%). Changed my life and highly reccomend you get a script for same. Use the triptans for the attacks the 02 doesn't reach. Proper regulator and mask essential.
Many, many believers in 02 here . . . for a reason . . . it works and without side effects.
Be Safe, PFDANs
Richard
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unsolved1
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Re: occipatal stimulator for trigeminal nerve
« Reply #15 on: Jan 9th, 2006, 7:49pm » |
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I had an Occipital nerve stimulator put in in March of 2004 by MHNI. I only kept it as a trial for 7 days. I didn't touch the headaches.
UNsolved
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CHTom
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Re: occipatal stimulator for trigeminal nerve
« Reply #16 on: Jan 10th, 2006, 12:53am » |
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Had DBS surgery in Sept., battery charged with 2.5 volts, no effect; went back in in Nov., charged with 3 volts, now have 2-5 pain free days a week; going back in this month to have voltage increased to 4volts-we'll see what happens, but I am positive.
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jacks920
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Re: occipatal stimulator for trigeminal nerve
« Reply #17 on: Jan 14th, 2006, 4:18pm » |
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Yes everybody,
I have tried O2 and everything else out there. All kinds of preventitive meds, including steroidal meds and many other types. Believe me, I'm not new to the headache game. Right now, I'm reaching for anything that might work. Thanks to everyone for the info; though. Jacks
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erikadb
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Re: occipatal stimulator for trigeminal nerve
« Reply #18 on: Feb 16th, 2006, 2:34am » |
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Dr. Dodick at Mayo in Scottsdale did mine about 3 years ago, didn't work. Had radio-frequency ablation of trigeminal nerve done as well at Tulane, it was the single most painful experience of my life, worse then the headaches my dad could hear me screaming from the waiting room he was in and had to leave the hospital. Didn't work either but whose to say NONE of it had any effect?? I just can't tell anymore if it was something I had done or if it was just they went away for a bit.
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