Can,

Welcome to CH.Com. Every Clusterhead here has the greatest respect and appreciation for those who support us, so a big thank you.

You say your husband is on day 2 of a 50,000 iu daily dose of D3. You and he need to read the thread "123 days pain free...." In the Medications & Treatments section here.

There is a lot of reading but it will be worth it. It sets out the full D3 Regimen as recommended by Batch. It is important that the regimen is followed in full, or as close to as possible.

Batch's regimen has benefited a lot if us here but you have to do it right and give it time to work. Once it starts to work your husband will have to stay on it forever.

Let us know how you got on with the Neuro today.

Mind each other,

Peter.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Is he under care of a headache specialist? If not, important that he have good work-up to coinfirm that that you are dealing with Cluster and to develop a treatment plan.

Dependinng on ER and oxygen is inadequate with Cluster which is increasing in frequency/severity.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
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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.

Can,

Great news about the Neuro. It's such a relief to get one who actually undestands Clusters.

I tried Indomethacin a long time ago and it didn't do much for me. However, others have had good results. We're all different and what works for one may not for another.

Did you discuss D3 with the Neuro at all ? Did he prescribe any abortives ?

Good news on the Oxygen. I would strongly recommend the mask on sale here (see CH.com store above left). It is designed specifically for CH and is much more efficient than a standard mask.

You sound more positive which is good. There is plenty of expertise here, so stay that way.

Peter.

Can,

I don't know about Imitrex, I've never used it. Some people split the injections to make them go further.  Maz, from the UK knows a lot about it. I'm sure she will give you advice.

Very understandable about your conversation with the Neuro. Never mind, read up on D3 as mentioned above.

Make sure the Oxygen tank is set up and ready for use beside the bed tonight. It needs to be to hand and operated at 15ltrs/minute to get the quickest relief.

Also, read through the yellow tab above, top left of the page, entitled Oxygen Info.

Wishing you both a peaceful night. You've both had quite a day.

Peter.

Glad to report a PFNAD yesterday. Today was less ideal, a hard time getting to sleep last night, and 2 daytime hits (aborted with that sweet sweet O2 we finally have). Considering taking melatonin tonight to help that out, as tomorrow is a work day- where the O2 wont be available. Nerves all around with this beast.

Can wrote, Considering taking melatonin tonight to help that out.

Melatonin 5-15mg before going to bed, can take a couple of weeks before it kicks in.

Hoppy

Happy to report the melatonin seemed to help with sleep.

Jon019, youre right. Truly thank you for the kick in the ass.

He is allowed the o2 (or so we assume), but my husband is embarrassed by his CH (we all cope differently) and didn't want to be seen with it I think. I put down my nagging wife foot, and it is off to work with him. I very much want to get him a smaller tank for work, as this thing is a big one (M?) We are out of pocket on the o2, so we are thinking welding. Thank goodness we have a car, as we are in NYC and the subway with a non-rolling o2? Good luck.

Hi Can
Twelve mgs is a huge dose of imitrex, and personally I wouldn't feel comfortable taking it. If a doctor has prescribed it I guess it's Ok , but my auto injections are 6mg and the instructions are very clear - if you need a second shot do not take it within an hour of the first one.And no more than 2 (total 12mg) in 24 hours.

There are ways to make the injections last longer which helps not only to treat more attacks, but also spreads the cost or the amount your insurance company will allow.

On the very left of your screen is a blue tab - "imitrex tip".  That shows how to split a dose. I've done it many times and find that 3mg works equally as well as 6. So you can save half for later.

If you have the other kind of injectors - that look like a pen, they are harder to take apart so I asked my pharmacist for some syringes - the type diabetics use. I discharge the pen into the syringe and use half from there, and save half.
It does mean using the same needle twice, but as long as the needle doesn't come into any contact with anything else and the cap is put back on immediately it shoud stay clean enough to use again.

I also find "doing it myself" less traumatic than the auto injections.  Those things go off like a damned nail gun.  Doing it yourself doesn't hurt nearly as much and leaves a lot less bruising.

I'm lucky here in the Uk.  I can get a supply easily and for free on our NHS system.  If you have to pay for them, or have insurance issues, try to get a few when your husband is NOT in cycle. It helps to spread the cost and keeps you prepared for when the cycle starts. It doesn't matter if the remission is a long one - I've used them 6 months out of date and they still work fine.

Send me a PM if I can help more. And thank you for supporting your husband so well. I don't know what I would do without my hubby.  He knows I want to be left completely alone when I have an attack so he stays away, but he does a wonderful job of fending off all the other people who try to get me to lie down in a dark room, and bring me a couple of pills which " always works for them".

Hey Can,

Give us an update on how things are going.

Cheers,

Peter.

Can,

Good to hear from you.

Can I suggest he takes the Benadryl last thing at night with 10 mg Melatonin to give the best chance of a good night's sleep.

Peter.