My brother needs help finding a doctor

[nbonning]

I am posting this for my brother, who is severely disabled by CH and does not have internet access:

 

I need urgent help finding the right doctor to treat my cluster headaches. Here is my situation: I’ve suffered from chronic cluster headaches for 16 or 17 years. The longest I’ve gone without a cluster headache is 10 days. Over the years, I’ve experimented with dozens of meds and oxygen. But the only two things that have been found to work are narcotic painkillers and the non-narcotic Sumitriptan. Both of which I’ve been taking for years.  For several years my daily prescription of oxycodone has been 300 mg/day, which used to be enough. But for the last few years it has barely been adequate to deal with the normal fluctuations in my headache phases (obviously my body has built up a tolerance to that dosage level). My Rx for Sumitriptan is 9 tablets per month; my doctor says if a take more than two of them in a week, it will cause a heart attack. Six weeks ago, I entered a severe headache phase that has forced me to use as many as six Sumitriptans a week (which of course I don’t dare tell my doctor). My doctor tells me he  is frightened of the new legal climate surrounding the prescription of narcotic painkillers, and refuses to increase either of my medications. I will soon run out of my small backlog of Sumitriptan and I know I cannot survive my cluster headaches without some means of treating them. So, I am looking for a doctor who can do two things: 1) increase my prescription of narcotic painkillers at least long enough to get me to a better solution, and 2) is familiar with the latest solutions for cluster headaches. For example, I would like to know if a Prialt implant might help me.  Can anyone of you fellow CH sufferers help me? I live north of Seattle, Washington, so I’m hoping to find a doctor in the greater Seattle area. This is my last shot. Thanks.

[Dallas Denny]

Welcome to the community nbonning...sorry you need to be here!

You really need a doc that knows how to treat CH!! Imitrex pills are very ineffective and O2 administered correctly should be your go to aborttive!

I have sent a message to a Clusterhead that i know from Seattle and will post again when I hear from her.

Dallas Denny

[CHfather]

According to the OUCH "Recommended Doctor" list, these three in or near Seattle have been recommended by people with CH::

Issaquah:
Dr Lily Jung Henson
Seattle:
Dr. Sylvia Lucas
Neurology Headache and Multiple Sclerosis Clinic at UWMC
Dr. Elena Robinson
Krischner Gordon and Erlich Mds

 

As Denny says, you have been getting really bad medical advice for a really long time.  It's shocking to me (and I suspect to most of us) that oxy + imitrex pills gave you any relief.  (Makes me wonder whether you actually have CH -- I'm not saying that you haven't been diagnosed with CH; only that those things usually don't work, and oxygen, properly used, almost always does.)

 

Some things even a good doctor probably won't recommend (because they won't know about them): the vitamin D3 regimen helps lots of people (see the ClusterBuster Files section of this board for more info); drinking an energy shot or energy drink (or sometimes a strong cup of coffee) at the first sign of an attack helps; melatonin at night, starting with 6-9mg and working up, can help.

[nbonning]

Thanks for your thoughtful responses. I'll pass this along to my brother.

 

A little info...He was diagnosed with CH by various docs over the years. He has a reputable pain specialist who can't find any solution, other than large doses of oxycodone and Imitrex which have worked well in the past, but he won't increase the dosage any more.  The list of other meds and therapies that my brother has tried is extensive. The only thing he has not been able to try is LSD, as it's not accessible. He owns an oxygen machine, but no longer getting any relief from it. He'd like to get off the narcotics if and when another solution is available. Meanwhile, however, he needs a doc who will prescribe.

 

He has used energy drinks, coffee, and melatonin, but not the vitamin D3 regimen. (I'll pass that on to him.) I found a non-narcotic drug called Prialt that is administered through the spine with an implant. Does anyone have experience with this for CH? Any experience with surgeries? Any emergency room experience getting relief when nothing else works?

 

Thanks!

[CHfather]

An "oxygen machine," called a concentrator, is not the way that oxygen is administered for CH.  Tanks of oxygen, with a high flow-rate regulator and a non-rebreather mask (not nasal cannula, in case he's also been using that), are the way it's done correctly.  I would say again, agreeing with Denny, that he is getting very inadequate medical treatment.  When you say "the only thing he has not been able to try is LSD," does that mean he has tried psilocybin, LSA (from rivea corymbosa seeds), and DALT?  If so, has he tried them properly -- with doses every five days while NOT taking the triptans? 

 

And he hasn't even used sumatriptan injections yet, which will serve him 10X better than the tablets and the oxy!  His doctor, however reputable, is lousy.  I haven't seen Prialt referred to ever for CH patients, but maybe I have missed something.  It's just an analgesic; it's very likely that it will not help.  An important thing to be aware of here is that this is not a "pain management" issue, because most pain drugs just simply do not work on CH.  There's practically nothing that can be done in an ER for that reason. People go and they get loaded up with "pain medicines" such as tramadol or opiates, and they don't help.  What helps, in the medical realm, for CH is, #1, oxygen, and #1b, injected triptans.   If he hasn't had a steroid taper (prednisone), that could be tried, and verapamil as a preventive if he hasn't tried that.  What works, non-medically, are D3, the other things I have mentioned which you say he has already tried without success, and busting with psilo, seeds, or acid.

 

My daughter was diagnosed for five years, by several fancy doctors, as having trigeminal neuralgia, before we finally figured out that she has CH.  Many, many people have suffered from years of misdiagnosis of "headache" conditions.  Maybe he has CH . . . and maybe he doesn't.  Certainly I wouldn't trust the doctor that is treating him to provide an accurate diagnosis, given how bad his prescriptions have been.  There are many CH lookalikes, such as various forms of hemicrania.  I'd suggest that he should try the drug indomethacin, which won't help if he has CH but will help if he has one of the lookalikes.

[Dallas Denny]

Hi nbonning!

Unfortunately, oxygen machines don't work for clusterheads....it's not 100% O2 and the flow rate is much to low usually!

All of the surgical options are only marginally effective for most folks. I've not seen anything regarding the prialt that you mentioned

Your brother really needs to see a doc that has a clue on how to effectively treat cluster headaches.....and as has been mentioned, the vitamin D3 regimen works very well for lots of folks!

DD

[nbonning]

Thanks for your helpful comments! I agree he has NOT gotten adequate treatment, and we'll pursue one of the doctors on the list!