Hello, my name is Elle and I my headaches are back again. I haven't been on this site in a while. I have been doing a little bit of research as far as any medical advancement is concerned in the world of helping cluster sufferers like us. I did some reading about Arterial Ligation and found it to be something I would love to believe worked but am skeptical of course... I want to know more about any surgical procedures and permanent results that people have experienced or heard of. Especially if any happened to take place in the US.
:-? :-? :-/   I am a 35 year old single mother, I have had cluster headaches since I was 15 years old.. I used to get them episodic and they would last a few weeks.. and would respond well to meds. As timewent on and I got older my episodes became longer and longer and harder to treat. My last two episodes were 9 months and I havnt been able to get off meds for the past 2 years.. the verepamil was keeping them at bay for 2 years up until a few weeks ago and i am a complete mess again. I am on verepamil , topamax, prednisone, imatrex, oxygen and supplements and I still cannot get a good hold on them. I feel like a zombie for the most part and am still in pain allot of the time. I know this is the situation for most of us and I am proberbly jsut being a wishful thinker, but I am having a harder time now because I have a three year old. I dont have the time to lay down and die and if it wasnt for him thats what I would do..I am terrified because I am the only one my son has to support him and i cant do it in this condition.. I need to work and funcion. so if anyone has anything they can share with me as far as sergical procedures , experiences or info I would greatly appreciate it . Thank you.  :-/

Hi Elle,
Sorry to hear your having such a rough trot. I was just
wondering what supplements have you been taking?

Hoppy.

Hello Hoppy,
I am taking vitamin D, Vitamin B2, cq 10 100 mg 3x day, Magneseum 400mg, melatonin 3 mg.

On top of all my meds.. I am popping pills all day long.. I also just found out that i have a gluten allergy.

I don't care what any publication says, cauterization of nerves sounds like a very bad idea and I've not heard of 1 single person on this board say that they've had it done and/ or it worked for anyone else. Studies published by 'doctors' and/or hospitals/clinics are often 'misrepresented' ... I've seen it first hand ... and in my opinion, these 'misrepresentations' are done so more research and grant money can be sought after $$$$  >:(

Like a neurosurgeon from the Cleveland Clinic advised me about Deep Brain Stimulation: "I would only recommend it right before you become suicidal!"

And think about it, cauterization of facial nerves would cause facial paralysis (at least on 1 side of the face & tongue causing your face to 'droop' and affecting your speech). The clusters could then switch sides --> then what, paralyze the other side of your face & tongue too? Even in doing so, this would NOT guarantee to stop the pain and could even make the pain worse (according to Dr. Todd Rozen formerly from MHNI, it could cause 24/7 intense pain. He advised me to run from these types of surgeries). Lastly, the cauterized nerves can grow back. Who knows what type of shape you'd be in then.

Again, in my opinion, I'd keep looking for other options. Keep asking members on this board ... there is a wealth of information right here !

Good Luck  :)

I4B

Someone else plz chime in ! 8-)

Sadly I haven't seen anyone post of having success with this procedure. Follow this link to the medications section of this board and read the post 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It's the complete D-3 regimen, has me pain free for over 3.5 years, sorry to hear you're having such a rough go of it. What part of the world you hailing from?

Joe

I had a feeling I wasnt gonna hear any good news about any surgical procedures. I pray for all of us one day that there is some type of permanent relief. I know I cant live like this for much longer! Its either agony or Im a pill popping zombie feeling sick all the time barely able to function and still in agony sometimes. What a toss up.. Sorry to be so negative, Im just going through it real bad right now and feel so alone... I live in Matawan, NJ. I sometimes wish I knew someone else with this condition. Not that I would wish it on my worst enemy because I wouldn't..  Im falling into the dark place that I hate so bad and I really want to find a better way to treat these suckers. These meds are gonna slowly kill me.. Im gonna look into the d3 and links that you mentioned. Thanks guys, as Im sure you know it just helps to know someone is on the other end and really knows what I feel like.

Elle wrote on Dec 8^th, 2013 at 8:22pm:

I am taking vitamin D, Vitamin B2, cq 10 100 mg 3x day, Magneseum 400mg, melatonin 3 mg.

How much vitamin D3 and for how long have you been taking it?

Some people seem to take a while for it to take effect and others have it work in days.

It's helped me hugely and just a few weeks ago I hit 666 days CH pain free.

Hi Elle,
Since being on the vitamin D3 regime, I've been CH free
for eleven months, after suffering from CH's for forty three
years. So don't let the [smiley=evil.gif] win. There is light
at the end of the tunnel.

Hoppy.

Hi Elle
Are you using the oxygen correctly? It must be at a flow of at least 15 - 25 lts per minute, with a non rebreather mask. If not it likely will not work. Check out the yellow highlighted tab "oxygen info" on the left of your screen.

I think arterial ligation is Danny Boy's Dad's proceedure in South Africa.  Not discussed much on the MB and when it is, it's controversial to say the least.

Elle, like you I have intractable CHs and am chronic. At best, I manage the attacks with a variety of prevents and abortives: O2, Monster energy drinks, Imitrex and Migranal. But, and I know this is a shot in the dark, I have had some success (albeit short term but it's still a relief) with Occipital Nerve blocks. Have you tried those yet? blessings. lance

You're already getting some more good & safer options. Doctors want $$, we just want to help. The HIGH FLOW O2, the D3 regime, and the Occipital nerve block are all safer alternatives to try.

And remember, no matter where you are, you ARE NOT ALONE in this fight against 'The beast' !

Again, good luck !!  :)

I4B

This is the only abstract from the largest medical library in the U.S. This procedure is very far from being used as a proven treatment.
===========
J Oral Maxillofac Surg. 2013 Apr;71(4):677-81.
A new minimally invasive technique for cauterizing the maxillary artery and its application in the treatment of cluster headache.
Shevel E.
SourceThe Headache Clinic, Johannesburg, South Africa. drshevel@headclin.com

Abstract
PURPOSE: To describe a new, relatively atraumatic method of cauterizing the maxillary artery and its effectiveness in treating cluster headache.

MATERIALS AND METHODS: Five patients with cluster headache were treated with arterial ligation of certain terminal branches of the external carotid artery. A new, atraumatic method of cauterizing the maxillary artery is described.

RESULTS: The success rate and postoperative morbidity are presented. In four out of five patients the cluster attacks ceased immediately following surgery.

CONCLUSION: A new intraoral technique for maxillary artery cauterization and the effectiveness of cauterization of the terminal branches of the external carotid artery in the treatment of cluster headache are described. Although the sample is small, the results are encouraging, and may offer permanent relief of cluster headache pain.

PMID:23507321[PubMed]
=================
Given your uneven response to the usual treatments, it would be wise to find a headache specialist to get a fresh look at your options are.
------
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Thank you all for responding to my post. It is a relief in itself to just communicate with people who know what I am going through.. I am very excited about the vitamin D3 regimen. I printed the info and I'm gonna purchase everything today. I just have a few concerns and questions.. I am taking allot of medication right now and some supplements as well. I don't think I want to alter any of the meds for the moment but should I just stick with the supplements that are on the d3 plan and nix the rest that I have been taking? My other concern is I only weigh 93 pounds and am wondering if that would mean that I should take any less of anything on the d3 plan? if anyone has any insight please let me know. and for those  of you that have had success from this have you been able to stay of of your meds as well? that would be a dream come true!!! Thank you so much in advance. I appreciate all your help.

A significant problem in medicine are patients who are taking multiple meds/supplements from more than one M.D. or OTC products. The interactoan can me messy since most of us lack the kowledge/skill to be aware of the interactions.

Just because we can buy a product without an Rx does not mean that it's safe or that mixing with other products is also safe.

I always recall a woman whose father was on the verge of being hospitalized for some ???? mental disorder until his primary care doc asked for a list of his meds.

The daughter found 16 active prescriptions on dad's dresser! Extreme, to be sure, but a lesson nonetheless.

Hi Elle,
Theirs been no side effects from folk thus far whilst on
the vitamin D3 regime and regular CH meds. Batch mention
in his post some info for woman on the regime. Just remem-
ber to take the whole regime with your main meal of the
day. Also you need to add 400mg of magnesium citrate and
one a day centrum silver to this regime. If you are on verap-
amil you need a seven hour gap before taking this regime
so that the calcium citrate works.

Hoppy.

A good person to ask about drug interactions is a good pharmacist. They are often more knowledgeable than many doctors.

I started the D3 with the help of Batch today. Im hoping it goes well. I wasnt able to get all the vitamins I need but I will get the rest tomorrow. Im praying this works and am feeling pretty good about it. Im very grateful for Batch and his guidence he seems like a great man. He took his time to help me and that means a whole lot. Thanks to everyone who has commented on this post, Im not feeling so alone anymore and that is a major improvement from a few days ago :)

Here's my story with surgeries:

I've been chronic for 23 years.  About 18 years ago after trying all meds and being unresponsive, my neuro decided to try a radiofrequency rhizotomy of branches V1 and V2 of my trigeminal nerve, a procedure the surgeon had been doing to treat trigeminal neuralgia.  I lost all feeling on that side of my face from my upper lip to the top of my head.  Including loss of feeling in my eye, which has resulted in dry-eye.

The good news - I had 6 months pain free that I desperately needed at the time - I was at the end of my rope.  After 6 months the headaches returned, even though I still lacked feeling in my face (not sure how that can happen, but it did).  I had the surgery performed a second time and got no additional relief.

Overall, considering where I was at the time, for me it was worth it.  I still have to use natural tears drops every few hours.   Complications - other than the numbness, which I've gotten used to, I've had some vision problems when I wasn't diligent with the natural tears, also I had a severely scratched cornea that we thought I might lose my vision over because I couldn't feel it, thought it was pink eye and waited a few days to treat and it got bad quickly.  I was lucky and it healed almost fully (now 20/30 vision in that eye).  Also, the feeling has come back a little around the outside of my face over the years.

The upside - 6 months pain free, and while the clusters I get today hurt worse than anything I can imagine, based upon my behavior during the headaches, I realize that the pain is less severe today.  Also, I now get less of the related symptoms like tearing and stuffy nose.  Once again - not sure why.

I've tried occipital nerve blocks and they offered me no relief from the clusters, but did provide some relief from the 24/7 non-cluster headaches I sometimes end up with during a vicious cycle.  I had the occipital nerve blocks and trigger point injections in my neck (the "cluster bump", I think I've seen it referred to).  I think the trigger-point injections in my neck were more beneficial than the occipital nerve blocks IMHO.

Bottom line - I wouldn't suggest it, but if you're really desperate and at the end of your rope, the radiofrequency rhizotomy of your trigeminal nerve may be something to consider once you've tried everything else, but don't count on more than 6 months of relief (and that's no guarantee).  I was lucky and didn't have the constant pain some have complained of, so keep that in mind as a potential downside too.  The numbness remains but I didn't have any paralysis or drooping on that side.  Again - your results may differ.  An un/under-reported in medical literature upside - my daughter thinks its really cool to be able to tap my face and me not notice (other than when she forgets and does the wrong side) :-) Hope this helps.