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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Occipital Nerve Stimulation - Mayo Clinic
        
(Message started by: MarkHW on Jul 28^th, 2003, 10:18am)

Title: Occipital Nerve Stimulation - Mayo Clinic
Post by MarkHW on Jul 28^th, 2003, 10:18am

I originally posted this under General and thought it should go here...

********************************

I had my eval at the Mayo clinic yesterday and am leaving for home later today.

Here's what happened.

I met with Dr. Gladstone & Dr. Dodick in the morning. They went over all of my history, did some neuro tests, etc.

Their plan is the following:
1. Try a couple of drug combos that have not been tried before on me. Most of the drugs have been tried, but not in combination. The drugs in question are: Melatonin, Verapamil, Topamax, and Lithium. The last drug (I can't remember the name) is a fertility drug that effects the hypothalmus.

2. Work with my Neuro back in ohio so I don't have to come back here just to get treatment.

3. Stay in phone & email contact with me to see how things are going.

4. If the drug therapy doesn't work then on to the Occipital Nerve Stimulation.

I then met with 2 doctors in the pain management clinic.
They went over how the occipital nerve stimulator works.
The process is the following:

1. attach an external wire under the skin to the right & left occipital nerve areas in the back of the head. Go a week this way trying different levels of current, etc, to see what works best.

2. Implant wires that attach to the occipital nerve area in the back of the head. Run these wires under the skin to a location somewhere on the body where the battery is installed (also under the skin). The batter is about 3" by 4" in size and is put under the skin in the chest or stomache. The wires are also all under the skin.

They told me that the downside to this is the following:
1. Wires can move in the head and have to be reattached.
2. The battery will last 3-5 years and then surgery is needed to replace it.
3. There is always a chance of infection when you inplant foreign substances in the body.

They said that about 1/2 the patients have great success, 1/4 have moderate, and 1/4 have none.

After the discussion they gave me an occipital nerve block on both sides of my head. This is NOT to test the affectiveness of the occiptial nerve stimulators since it is a totally different process. It was just something to try to give me some relief until the drug therapy kicks in.

Well.. that's it. If anyone has any questions... let me know!
Mark

P.S. They also told me that they are only considering patients that are extremely resistant to drug therapy and have cluster pretty much all the time.

And... Dr. Gladstone specifically asked me if I was a member of OUCH!

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by MarkHW on Jul 28^th, 2003, 10:19am

As a postscript... Tomorrow will be a week since the Occiptial Nerve Blocks and so far - no clusters!!!!

Mark

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by Marc on Jul 28^th, 2003, 11:30am

Mark,

Thanks for the update. I really hope that things keep getting better for you.

I'm glad you brought up the idea of COMBINATIONS of drugs. This has been discussed here many, many times but tends to get ignored by a lot of sufferers. I can't even count the number of times I've read " Oh, I've tried every drug in every possible combination over the last 6 months, and none of them work"

Finding the right combination requires a methodical approach and each combo must be given time to work.

Interesting that he asked about OUCH - one step at a time.......

Good luck!

Marc

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by MarkHW on Jul 30^th, 2003, 9:52am

Thanks Marc

Well... I went 8 days with no cluster, but had one this morning...

I am now on Celexa (for migraine), Inderal, & Melatonin. Next will be a small dose of topamax.

Then we see what else!

Mark

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by Prense on Jul 30^th, 2003, 7:38pm

How much is considered a "small" dose? Also, if you don't mind sharing...how are the side effects with the drug combos?

Chris

*edited* in regards to the topamax on the dose question

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by Medlengough on Aug 1^st, 2003, 9:20pm

What is the fertility medication that affects the Hypothalamus? Is it a Prolactin antagonist?
Medlengough

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by Prense on Aug 2^nd, 2003, 10:12am

OH NO!!! They shocked Mark's eye and now he's blind!!!

Heh, well, I hope not anyway...how's it going man? Great, I hope...

Chris

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by lwcardona on Aug 3^rd, 2003, 3:02pm

:o Mark, Your post really made me sit up and take note!! I have tried every drug to be found out there and then some with NO relief. My clusters have been chronic (min 1 per day) since July 3, 1998. Would you be so kind as to e-mail me any and all info on this - I'd really appreciate it!! They recently discovered an enlarged pituitary gland and minimal pressure on my right optic nerve as a result so this is very interesting. THANKS!!

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by UnsolvedEquation on Aug 5^th, 2003, 9:15pm

I am a CHRONIC CLUSTERHEAD...for many years now. "I've been there and done that" ( every med mentioned and more ) I've had many Nerve blocks including a Bi-lateral Sphenopalentine and several Occipital's. I will be the next to have the stimulator implant ( very soon, I hope ). Has anyone else already had this ? I'd like to hear from you. Please post a message. TY

Quote:

I think I need a FULLY-AUTOMATIC Imitrex injector !!

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by chanel on Aug 7^th, 2003, 6:49am

My Aunt just had the nerve stimulator implated a few weeks ago and is really unpleased with the progress so far, she goes in this week to have it 'adjusted' and see if they can better pinpoint the nerves that are causing her trouble.

As far as medication combos go, I'm on;

Procardia 90mg/day, Atenolol 150mg/day, Remeron 45mg/day, Topamax 300 mg/day...prophylactically.

Percocet and phenergan for abortive.

Seems to be the best combo for ME.

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by hdbngr on Aug 8^th, 2003, 8:24am

Just had the "practice" occipital implant on the 30th. Wire/lead is stitched under the skin at the base of my skull and attach to an external battery I wear attached to my clothing. You have to remove this when bathing. While they were placing the leads during the surgery on the 30th, they Xrayed my head to mark the lead palcement. They will use this Xray to determine lead placement for the actual surgery.

I go back today to have it removed and evaluate the effectiveness. Apparently, you also have to heal for four weeks between the practice surgery and actual implant. They wont just immediately do the implant when you already have an incision. Personally, I don't want to give the device back at all! While some adjustments do need to be made, it has helped a good bit. Four weeks without it...yuck. I was hooked from the moment they turned it on.

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by Ted on Aug 14^th, 2003, 3:03am

Very cool, very cool, very cool. Thanks dude. I got a call the other day that after nearly a year I'm being taken in on the waiting list. I'm going out to AZ in October to get evaluated for the occipital nerve stimulator. My appt is with Dodick and Gladstone, I think. I couldn't understand the name of the second person and after asking twice I let it go. But it sounded like something like that. I'd hate to go out there and have them say "thanks for traveling 2500 miles. Here's your prescription." But anyway, many of the questions I had about the procedure you just answered for me. I am so excited about seeing them and hopefully, hopefully, hopefully getting the procedure done. Where are you from? How far did you have to travel to get the prescription? I better talk to the doctors and make sure I'm not the only one leaning towards this.

Title: Re: Occipital Nerve Stimulation - Mayo Clinic
Post by MarkHW on Aug 14^th, 2003, 2:19pm

Sorry I haven't been around... my work has been nuts and my youngest son is going to need surgery...

I'm on verapamil & melatonin. The worst side effects are fatigue and constipation. Other than that.... nothing.

I went over 2 weeks with no cluster and then they started again, so I upped the verapamil. I hate to up the melatonin because it makes me very sleepy.

I am really trying to avoid topamax. I took it for awhile and felt like I should sit in a corner & drool.

So... the reason that I was told to wait on the stimulator is because they think I may not have tried every med combo.

Mark