Hello new friends! I'm so glad that I stumbled across this board during my most recent (and ongoing) episode of attacks.  I'm Nicole, I'm 28 years old and married to Mike, we have a daughter who will be 3 in December.  We live in Bucks County, PA.  I have had cluster headaches for years, but I'm "lucky" enough that they aren't chronic.  I can (and have) gone years between attacks. In the past they have only lasted 3-5 days at the most and I didn't know what they were, just assumed migraines.  I have had the diagnosis of migraines since I was about 9 years old. However, looking back, I can say that they were NEVER migraines.  I was never able to lay still and it has always been on the right side of my head.  The doctors said "ocular migraines" since I described the feeling of my eye being ripped out.  I'll give them all the benefit of the doubt and assume they didn't know what cluster headaches were... but it's a tough road to travel as a kid dealing with that pain.  My last major episode was 3 years ago, when I was pregnant with my daughter. I had been reading about cluster headaches and kind of self-diagnosed.  I have always treated with high dosage ibuprofen, since tylenol and excedrin never even touch it, but I was pregnant and couldn't take medication, so I went to the ER and asked for an oxygen treatment. They looked at me like I was crazy and the attending said that not only had he never heard of cluster headaches, but that he had never heard of treating any headache with oxygen.  Needless to say, he gave me low-flow through the nose.  Did nothing, the cluster passed, and I went home.  Right now I'm on day 8 of waking up around 12:30 every night in a full blown attack.  IT IS KILLING ME.  I'm only grateful that they are night because my daughter is sleeping and doesn't have to see me pacing, rocking, crying, screaming, begging, and squeezing my head.  I've been reading through the message boards for a few days and I love all of the information that you have all shared.  I tried the redbull trick last night when I felt one coming on and it pushed it off for another hour and when it did hit it was much less extreme and shorter. Amen!  I'm going to talk to my primary doctor this afternoon and ask her opinion and tell her what I want to try... imitrex injector and oxygen to abort, prednisone and possibly an antidepressent.  My only issue w/ a lot of these medications is that my husband and I would like to have another child fairly soon, so I would want a long-term medication that is safe for pregnancy.  I also have fibromyalgia and my primary doctor is doing a great job managing that, so that's why I'm going to give her a chance to work with me on the clusters before going right to neuro.  Anyway... I just wanted to introduce myself and thank you for the amazing advice that you have given without even knowing I was reading yet. I am so sorry that there are other sufferers out there, but it's nice knowing I'm not alone (or crazy). :)

Hi AM,

Glad to hear the Red Bull helped!  8-)

Also glad to see you've been doing all manner of researching here - I predict that will continue to help you tremendously.

Some comments about your initial treatment plan ideas:

While getting your O2, etc. prescriptions, it's probably a good political move to ask your current doctor's opinion on how to treat CH, but don't listen to it or anything.  :D Only a headache specialist's opinion (and diagnosis) is worth listening to, and even then they'll likely try to load you up on toxic drugs when non toxic more effective treatments are actually available.

Since your episodes have historically been short, I can imagine you possibly getting by with O2 alone as your CH killer of choice. It might be worth trying for a few days before taking the plunge into the pharmaceuticals...?

Hopefully you've noticed the critical imitrex tip that allows dramatic stretching of doses:
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Just be aware that many of us feel that our CH has come back with a vengeance following a prednisone taper, and longer term high dose prednisone use is absolute no go territory, as it will become an extremely dangerous drug that causes all manner of permanent damage and will screw your immune system over big time.

As someone with fibromyalgia, I bet you could benefit from a healthy anti-inflammatory regimen, even if there wasn't a specific one that has some CH'ers reporting dramatic prevention results. There is such a CH regimen that features higher doses of vitamin D3, and if I were you I'd be right on it starting yesterday.  :) here's a link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Going by your history, If your episode continues, I bet you could also be an excellent candidate for successful natural non toxic prevention with RC (Rivea Corymbosa) seeds. These have been used by indigenous peoples for thousands of years and although they could theoretically be intoxicating in high doses, they are not when taken before bed in a small dose that is therapeutic for CH. They are legal to order and possess but not to ingest. The clusterbusers.com site and message board is the place to get all the skinny on that.

You are SMART SMART SMART for taking your treatment plan into your own hands - I know you'll be successful because of it.  :)

Welcome Nicole!  Sounds like you are headed in the right direction. Please continue reading and learning and sharing. 

I'd encourage you to get a proper diagnosis before starting up with Triptans and other strong medications.  There are other disorders that can mimic CH and treating them with triptans can be very dangerous.  It's always better to be safe than sorry.

Good luck...

-Dennis-

It's rare to find a general practice doc who has knowledge/skill in treating Cluster. In light of your plans for a pregnancy, it would be best to line up a headache specialist now since the treatment is more complex with PG.
---
Curr Pain Headache Rep. 2010 Apr;14(2):164-73.
Treatment of cluster headache in pregnancy and lactation.
Calhoun AH, Peterlin BL.
Source: Department of Psychiatry, University of North Carolina, Carolina Headache Institute, Chapel Hill, 27516, USA. calhouna@carolinaheadacheinstitute.com

Abstract
Cluster headache (CH) is a neurovascular headache syndrome characterized by headache attacks that occur with a circadian and circannual periodicity. The calculated prevalence of CH in reproductive-aged women is 7.5 of 100,000 women. Although data suggest that CH during pregnancy is a relatively rare condition, when it does occur, attacks remain unchanged in character and severity in the majority of patients. Thus, treatment of CH in pregnant and lactating women may remain a significant therapeutic challenge. This manuscript briefly reviews the epidemiology of CH in women, and then focuses on treatment options for both acute and preventative management of CH in pregnant and lactating women.

PMID:20425207[PubMed]
===========
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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.
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Given the complexity of Cluster, this is not a self-help project.

What they said! ;)

33 yr episodic sufferer, high flow oxygen is STILL my most consistently effective tretment. Nice thing about 02 is it'll work during your preganancy too. Several women have gone thru it with CH, hopefully they'll chime in soon.

I'm glad you found us, good luck on baby #2, mine are 25 and 27, still the light of my life! :)

Joe

Nicole,
Glad you found the site. I can remember back to 2004 or so when I first stumbled on CH.com after being diagnosed, it has been a big help to me!

I regards to treating your 12:30 am CHs, have you tried melatonin? There is a thread in the medications forum (link below) that discusses melatonin to stop the night attacks. I started getting night CHs a few weeks ago but after starting my melatonin regiment (16mg a night) I haven't had a night CH since. Read the thread and try it out, generic melatonin is around $6 at the local drug store.

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Pain free days to you!

Yup, all great advise. My first instinct is to direct you to Oxygen... completely non-toxic... and first line abortive for most of us. Probably just what you are looking for. I have also started the D3 regimen, and support clusterbusters.com
Let us know if you have trouble getting O2, many of us have invested in equipment of our own... fairly affordable and can eliminate rental costs.
Best wishes.

I am curious about one thing, Abbysmom. You said you originally had a diagnosis of ocular migraine. This is a real condition and does often imitate CHs. It would be good to have certainty here. You may indeed have CHs or the original diagnosis may still hold. I don't think most of what we've suggested could be a problem regardless (O2, D3, energy drinks, melatonin) but the asprin/ibuprofen route is pretty useless in either case. Let us know what you discover. Good luck and God bless. lance

Thank you all so much for your responses and advice!  I had a nice long appointment with my doctor yesterday and she was familiar with CH and said that it was probably never considered in my past since it's mostly men that get these. Anyway, she wasn't comfortable providing oxygen just yet but she did give me Rx for the Prednisone and started me on Elavil.  She also prescribed (and gave me a sample of) Sumavel injectables.  After taking the prednisone and the elavil, last night was the first night I've slept through without a CH in almost ten days.  I'm keeping the Sumavel with me, always, in case it's needed but I'm very hopeful that the prednisone may break this cycle and the elavil will keep the beast away for a bit.  Thanks again for all of your excellent advice and I look forward to sticking around. Everyone here is amazing!

It's good to see that you're making some progress, long may it continue.

What does amaze me is how often doctors are so reluctant to proscribe oxygen. Oxygen is a life changer for killing off CHs in minutes with no side effects.

Ya, I don't get it either. They are very quick to load you up with completely toxic drugs with bad side effects, but oxygen? Come on! What are they afraid of... you not needing them anymore?

Hi Nicole,

Glad you're getting some help, I too am amazed that Oxygen is still not recognized by many in the medical field.

Rest easy knowing that there is an ongoing clinical study being conducted by a preeminent Headache Neurologist, with help from folks on this very board and Lifegas. I should know, he's my Neuro...

I got lucky, one: with this Neurologist and two: the fact that I'm currently out of cycle and have been using High flow Oxygen for years with a demand valve, as my first line abortive.

Thanks to several  forum members past and present, I think the medical field will be more willing to embrace Highflow Oxygen, based on this study and it's efficacy as an abortive.

All the best,

Baer

I forgot to mention that I also started the Fish Oil and Vitamin D regimen that was recommended in another thread. :)

Unfortunately I did get a CH during the day yesterday, which gave me a chance to try out the DosePro injection.  It was great! So simple to use (though a little sore today at the injection site) and I fully aborted the CH w/in 5 minutes. I was also able to get 12 refills for $15 through some special they have going on right now.  Check the website if anyone else is interested. 

Hey Nicole,

I just wanted to jump in and say hello.  I suffer from fibromyalgia too so have a bit of an idea of where you might be at.

I too would really push for oxygen - changed my life, eliminated the fear of the next hit and so on.

Also wanted to mention re pregnancy - I'm sorry to hear that you had a cycle during your last pregnancy.  When I was pregnant and then when breast feeding(10 yrs ago) it was the first full year ever that I didn't have a cycle.  Maybe, just maybe next time around you'll be blessed with a ch free pregnancy.

Wishin you all the very best!!

Kate

Nicole, that's great news on the dosepro, and you did get it at a steal. If you aren't so lucky next time, and you aren't needle nervous or squeamish, check out the imitrex tip. You can stretch one "normal" dose of 6mg into three actual doses of 2mg. I find this is enough to abort a hit and it triples what I get in a normal Rx. Great news and stay pf! Blessings. lance