Hi everyone,

I'm new to this--just signed up. My cluster headaches are chronic and began just last fall (2013) while I was getting over the flu. I thought it was a sinus infection. Anyway, I've had all the tests: it's not sinus, it's not a brain tumor, etc. It's cluster headaches. Having them daily lately, every morning, very painful and lasting 2 to 3 hours, and some shadows, etc. during the day some times.
Has anyone tried marcaine injections? Botox? Nerve blocks?
I'd love oxygen, but since 2011 Medicare is not paying for oxygen for CH, and no company will even rent me a unit to try it out.

Thanks so much,
NewbieLass

hi newbie, sorry to hear of your plight. please provide us with more info like where you live and are you seeing a headache specialist. also do some research on this site since there are plenty of other options available that can help you.

Hi Dauber,
I live in California, in the SF Bay Area, near Stanford. I've seen two neurologists, one at a local clinic, and one who heads the Stanford Headache Clinic. He was the one who diagnosed me.
I'd prefer not to take drugs if I can manage without.
Both neurologists recommend Marcaine or some other Novocaine-like injections, in my forehead above my eyebrow, where the pain occurs. And if that helps, the Stanford doc recommends a nerve block, which, if I understand correctly, is kind of like frying the nerve.
Both of these approaches sound scary to me.
I've also noticed that I'm tending to tense the muscles around my right eye and am wondering if Botox might be helpful by keeping those muscles relaxed.

More than you wanted to know :  )
By the way: Thanks for the welcome!

All the best,

NewbieLass

NewbieLass,

Sorry to hear about your headaches, especially the fact that they are chronic.

I live in the Cupertino part of San Jose.  I have episodic CH, having had two episodes since November of 2013.  If you are going to the head of the Stanford Headache Clinic, you are getting really good care, IMHO.

A nerve block doesn't fry the nerve, it just deadens it for a while.  I'd go for it, if I were you.  It is interesting that your's seems to affect you outside of your skull.  Mine occur behind my left eye.  There's no way they can do a nerve block there.

Since you are on medicare, you, like me, have gotten CH after the age of 50 (I was 60 when mine started.)  We are both statistical anomalies.  Maybe we should buy lottery tickets.   :)

My neurologist is Lidia Brown over by El Camino Hospital in Mountain View.  She put me on magnesium and Topamax during my last episode, and my episode ended shortly after that.  But I don't know if the Topamax worked or if the episode simply ran its course by that time.  The Topamax definitely slowed me down, but I have to say it was worth it if it actually made the pain go away.  I guess I will see around the next equinox when it comes back if it follows the pattern of the first two.  I am still taking the magnesium.

Based on inputs from this site, she had my vitamin D level tested, but I haven't gotten the results from her yet. 

You might want to try welder's oxygen since it is cheaper than medical, but the same thing, since medicare won't pay.  That's a terrible thing to learn, BTW since I will be on it in 4 years.  This site has a lot of information on how to use welder's oxygen.

I just went to work for a company in Seattle, so I spend a lot of time up there these days.  But if you need an understanding ear, I am not far from you, and could probably meet for coffee, if you need some support.

Mark

Hi NewbieLass, sorry about Medicare not paying for O2. One of my insurance providers years ago would not pay for O2, but Apria Healthcare would still sell O2 and billed my VISA card. They needed a prescription from my neurologist saying "Oxygen 15 LPM with non-rebreather mask, as required for cluster headaches". Welding O2 is another option, but you don't want to tell that it is for medical use.

I'd encourage an open discussion with the doc re. not using meds. O2 is an effecive abortive bu its' action has a short life compared to other abortives.

Also, not using a preventive med leaves you open to more attacks.

Simply put, this is too new an area of medicine to making judgmengts about treatment, especiallyl when you are in the hands of good docs.

Print the PDF file, below, and use it as a tool for discussion withthe doc.

---

Hi and welcome

Marcaine (bupivacaine) is one of the drugs that can be used to perform a nerve block as a method of blocking the pain of a CH. The effectiveness of these can vary between it lasting a few months for some people to lasting a few days for others. There are other methods which can kill or cut nerves which are obviously permanent however even this is not always totally effective plus it can result in the loss of sensation to parts of the face. In some cases the CH pain just switches to the other side of the face.

For botox, whilst there are positive results for it being used to treat migraine the results are less clear for it being used to treat CH as the results for botox are comparable to that for a placebo (dummy treatment):

Treatment of headache with botulinum toxin A—a review according to evidence-based medicine criteria -"S Evers, A Rahmann, J Vollmer-Haase and I-W Husstedt", Cephalalgia Volume 22, Issue 9, pages 699–710, November 2002:


Quote:

The aim of this review is to evaluate the studies available from reference systems and published congress contributions on the prophylactic treatment of idiopathic and cervicogenic headache with botulinum toxin A, and to classify these studies according to evidence-based medicine (EBM) criteria. The studies were analysed with respect to the study design, the number of patients enrolled, the efficacy parameters, and the significance of results. We used the following classification of EBM. I: randomized, controlled study with sufficient number of patients; II: well-designed, controlled study (or randomized, controlled study with insufficient number of patients, no exact diagnosis, missing data of botulinum toxin A dose); III: well-designed, descriptive study; IV: case reports, opinions of experts. For tension-type headache, two studies were found with negative evidence of I with respect to the primary endpoint. There are about as many positive as negative studies with evidence of II or III. For the therapy of migraine, one study with both negative and positive evidence of I, one in part positive study of II, and three positive studies classified as III are available. Two studies on cervicogenic headache with evidence of II and III are contradictory. In addition, we found several positive case reports. For patients with cluster headache, there are positive and negative case reports. We found one positive case report for the treatment of chronic paroxysmal hemicrania. As a result of this analysis, we consider no sufficient positive evidence for a general treatment of idiopathic and cervicogenic headaches with botulinum toxin A to date. Further studies are needed for a definite evaluation of subgroups with benefit from such treatment.

The standard approach to treating CH is the combination of a preventive which should cut down how many CHs you get plus abortives which are used to kill off any CHs that you get.

Common preventives include verapamil, lithium and topomax. These are drugs that are taken daily and they should result in you getting a lot less CHs than you would otherwise get. Their effectiveness does vary between people with CH but a CH prevented is a whole load of pain avoided. Since these take a few days or so to take effect it is common for people to start on a prednisione taper over a week or so which is a very effective preventive for short term use.

For abortives, oxygen (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) is highly effective when used at a high flow rate (15lpm+) and using a non-rebreather mask. Using 25lpm I can kill off my CHs in about 5 minutes or less. Injectable imitrex (also known as sumatriptan or imigran) can also kill off a CH in a similar time.

Also read up about how many of us are using vitamin D3 to great effect as a preventive with over 80% having a successful result using it. I've gone about 2.5 years pain free with vitamin D3.

Mark Olson wrote on Jun 22^nd, 2014 at 12:52am:

A nerve block doesn't fry the nerve, it just deadens it for a while.  I'd go for it, if I were you.  It is interesting that your's seems to affect you outside of your skull.  Mine occur behind my left eye.  There's no way they can do a nerve block there.

You're right about the how the nerve block works, but seem to wrongly assume the location of the injection. A nerve block can occur in a few areas but the most common, which still is effective for classic CH symptoms of pain in or behind the eye, is an Occipital Nerve Block. blessings. lance

That's what you get when you have an engineer opine about health care.   :)

Hey NewbieLass,

Welcome to CH.com.  You've come to the right place.  Check your PM Inbox at the upper left of this page under the date.  I've left you some information.

You're correct... zapping your nerve bundles with an anesthetic is not good except under the most extreme conditions after trying everything else...  and botox is exactly what the name implies... a toxin that kills nerve cells. 

The best course of action is to see your PCP for the lab test for 25(OH)D.  That's the serum level metabolite of vitamin D3 that's used to measure its status.  When the results come back, ask for the actual serum conentration and do not accept "normal" for an answer.

The normal reference range for 25(OH)D is 30 to 100 ng/mL and as CH'ers, we need to maintain a target serum concentration around 80 ng/mL.

If your 25(OH)D lab results come back below 30 ng/mL...  and they will... you need to give the anti-inflammatory regimen with 10,000 IU/day vitamin D3 a try.

Sorry you're having problems obtaining oxyegn therapy...  "Medicare is not paying for oxygen for CH"  Your best bet is to obtain a written Rx for home oxygen therapy and pay cash for it...  Most home oxygen therapy providers will "cut you a deal for cash."

If that doesn't work...  it's time to take up welding... i.e., buy your own welder's oxygen and regulator... Just don't tell them how you intend to use it.

I don't usually go into politics... but no coverage for home oxygen therapy is a classic example of what obamacare is going to do to all of us...  and not just Medicare beneficiaries who have been paying into it for many years...

The Centers for Medicare and Medicaid Services (CMS) is filled with big government, nanny state bureaucrats who are all a bunch of liberal progressive socialists/communists... 

None of them are physicians... yet they make coverage determinations like no coverage for home oxygen therapy for CH'ers because they think they know more than any physician/neurologist when in reality they don't know $hyt from Shinola...

Electing a majority of Constitutional conservatives in the Senate and voting the liberal progressives i.e., communists out of office is the only way to regain control of CMS and HHS...  Otherwise... we're looking at socialist medicine with obamacare...  These idiots just want your money and for you to die because you're old and your medical care costs too much...

In short... elections have consequences... Electing more liberal progressives is only going to destroy what was once, the best healthcare in the world...

Sorry about the rant... Off the box...

Take care and please keep us posted.

V/R, Batch