I am recently married and my husband has headaches of the likes that I have never imagined!!  He was diagnosed with cluster headaches years ago and his headaches were under control the first 2 years I have known him.  He had imetrex injections, but I had never seen a full headache episode.  The last 6 weeks have been hell.  He doesn't sleep, he is having up to 5 headaches a day and has completely blown through his stockpile of injections.  We saw a neurologist at the VA hospital which prescribed a regimen of prednisone and a preventive medication, carbamazepine that he takes 200mg twice a day. Nothing seems to be working anymore. He also has an oxygen machine to help. I don't know how to alleviate his pain and have been researching everything I can possibly get my hands on concerning cluster headaches. 
What brings me to this forum is something I was reading about mushrooms and LSD, he has tried everything and if these alternative treatments are as good as I have been reading, we are all in! What I cannot find is a dosage and a regimen.  We aren't kids anymore and just blindly tripping is not what I am looking for, for my hubby.  I just want his suffering to stop and for him not be trapped by the fear of these horrible headaches. :'(
Thank you, in advance, for any advice.

As I type this, I have been up all night with him providing ice packs and cold washcloths while he is vomiting and screaming in pain.  I feel so awful that I can't help.....

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      Potter

Have you been back to the doc pressing for an evaluation of what he thinks is going on? Only taking meds which don't work is not the solution.

It's not uncommon with Cluster for an established, effective treatment program to stop working. WhY? ununknown but does indicate the need to start a new approach. There are a variety of alternative meds which need to be tried.

If you have no been seeing the doc, while all thse changes have been developing, it's essential you get back to him. IF he has nothing new to offer, then it's time to find a new doc, even if it means moving outside the VA.

Headache specialists are your best track to take. Cluster is far more complex than even neurologists are trained to treat. If you want to consider a change:
=====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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.

Thank you, he does not have an appointment until august 10th, with a neurologist at the VA in Cleveland, Ohio.  I did get him some magnesium and some feverfew extract.  Traditional medicine seem to have quit working, might as will give holistic medicine a try.  The oxygen article was very helpful, the VA does provide him with the oxygen machine... Now I know why it isn't helping.  Thank you again guys, hopefully we find a solution to get him some relief and more importantly, some sleep!

Fewerfew and magnesium are not going to provide the long term relief which is needed. Ditto for oxygen: it works for a shot time to relieve pain but does not have the long term effect which you need for Cluster.

We understand how you can get desperate trying to find relief but... Sorry, that August seems so far off.

Print the PDF file, below. Take it to the doc and use it as a tool to discuss treatment options. (And it will give you some idea of the major meds used for Cluster.) It's not the most comprehensive list (being a bit out of date) but these are meds with a long history of use and the evaluations listed are a better guide than jumping from this to that.

You didn't mention your husband's age or his service experince (in comat?, extensive exposure to chemicals?)

There is growing medical recognition that there are a number of disorder, some rather serious, which mimic Cluster but which are NOT headache disorders.

Suggest that you print the first 2-3 pages of the following and ask you doc to consider this may be a situaton to consideer.


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

---

Thank you Bob, He was a marine with special forces recon for 15 years.  He is 45.  I am happy to report something worked yesterday, either his conventional medicine, the holistic medicine, or luck but he did get a full night sleep. Enjoy this beautiful day!!

For him to get effective long term relief from CH he needs to be taking a preventive, something like verapamil, lithium or topamax which will cut down how many CHs he gets.

Also look into using vitamin D3 which has been very effective for many of us. PM Batch for lots of info on this.

An oxygen machine does not put out pure oxygen and it does so at a relatively low flow rate too, so they are not great for aborting CHs. Read how we use oxygen at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

You say he has an oxygen machine. Does that come with a nose canula, because it will not work.  You need at least 15 litres per minute with a non- rebreather mask. Nothing else will do it.

         While I agree that an oxygen machine is not effective for aborting ch's, my brother-in-law, a chronic ch'er, has found it quite good at preventing night time hits by going to sleep wearing the mask. It seems the steady increased intake of O2 all night prevents most hits.
He still has an oxygen tank for aborting when needed.
                            
                                                              Sean

Hi Sean, yes I can see the benefit in that. I have a similar experience by taking a sumatriptan pill before going to bed. They are too slow acting to abort, but once it's into your system it seems to last about 4 hours, allowing a little sleep.

maz wrote on Aug 11^th, 2015 at 3:00am:

Hi Sean, yes I can see the benefit in that. I have a similar experience by taking a sumatriptan pill before going to bed. They are too slow acting to abort, but once it's into your system it seems to last about 4 hours, allowing a little sleep.

My favourite " get a good nights sleep"  practice to Maz
especially when the recurring 2.am shadow appears on a regular basis. I'm not an early to bed person, So around 11 ish I pop a 50 mg imigran and pretty well all the time I'll get an uninterrupted nights sleep. My " normal cycle"  pre vitamins, was getting hit hard during the day, every 3-4 hours, but only ever one or two times times thru the night, but generally waking up with the commencement of one,  so as a preventative at least I got sleep thru a cycle.

colin

If you are looking for an alternative treatment, like LSD, Mushrooms,or RC seeds, check out our sister site, ClusterBusters, the link is to your left on this page, their is lots of info there on this subject.

Hoppy

wrote on Aug 11^th, 2015 at 5:41am:

maz wrote on Aug 11th, 2015 at 3:00am: Hi Sean, yes I can see the benefit in that. I have a similar experience by taking a sumatriptan pill before going to bed. They are too slow acting to abort, but once it's into your system it seems to last about 4 hours, allowing a little sleep. My favourite " get a good nights sleep"  practice to Maz especially when the recurring 2.am shadow appears on a regular basis. I'm not an early to bed person, So around 11 ish I pop a 50 mg imigran and pretty well all the time I'll get an uninterrupted nights sleep. My " normal cycle"  pre vitamins, was getting hit hard during the day, every 3-4 hours, but only ever one or two times times thru the night, but generally waking up with the commencement of one,  so as a preventative at least I got sleep thru a cycle. colin

Kudos should go to Hoppy. He gave me the heads up.

Another strong vote for the D-3 regimen, over 30 year episodic CH sufferer, 5 years pain free on the D-3 regimen, there is REALLY something to it.

Joe

   Same here,  Maz
                   50 mg Imitrex just before going to sleep has been my best weapon for years, starts to work about an hour in, just in time for the first hit of the night. Lasts 4 to 7 hours...
I'm gonna get a wake up call but that's why we have O2.
                   My success with the D3 regimen has been mostly good but now about once a week for several days at a time the beast still slips through. Aggravating.... but nothing like the old days of pure hell. My real concern at the moment is the fact that this cycle is now 5 weeks overdue to end and if it keeps up it's going to bleed right into my fall cycle.

                                                 Sean

Sean, don't ya just love it when the damn thing won't go away.
I had bad hits through Feb despite the D3, and again through July but in between has been constant mild hits and almost permanent shadows. I must have breathed more oxygen this last 6 months than I've done in all my previous lifetime. I'm sure the D3 is helping though because as you say it's nothing like the old days of pure hell. Of course that could be because I now have the correct meds and 02 so it never really has the chance to ramp up.

I've just been away for a few days and the hotel we were in wouldn't allow the 02 in the room. Spent a few nights in the car park- should have asked for a discount as I wasn't using the room !!! ;D ;D ;D

I've sent you a private message. Look in the upper left corner of the home page for a link to your mail box.

I'm with Joe on the D3 regimen. But ya gotta do it RIGHT. I'm almost two years pain free (being chronic since 97).

Also you might try Melatonin before bedtime. I've been doing this for years to keep night hits away. And it's worked for years and years.

But the best advice - read, read, and read this board... go to the doctor armed with "information". there's more research on here than in most medical schools on CH.

Keep us informed. We're here to help.  :-*