Well, now I'm scared.  I got my first CH 2 years ago. All the classic stuff - one side, eye feeling like it would explode, worst at night, eye almost closing, etc.  Was misdiagnosed for a while and then finally was prescribed Prednisone.  It knocked it out within hours.  I think I told everyone I know that whoever invented Pred should have their B'day become a national holiday.  Thrilled and didn't really think about it again.  A month ago, it hit again.  No problem - I'll just get some more Pred and I'll be fine for another 2 years.  Well, the CH were gone while I was taking it, but have now returned.  When I came to this site I expected to see many praising the god that invented steroids only to find that if you take them for a while, "you'll end up in a wheelchair."  I feel like I'm screwed.

No real question here just writing to say that I can't imagine dealing with this for an extended period.  You chronic sufferers have to be the toughest people in the world.  It's horrifying that all these drugs, O2, the right foods, Redbull MIGHT help but nothing really tames "the beast". 

Sorry for the rambling.

Welcome sj,

Your comment "nothing really tames "the beast". " stuck out to me. Please head over to the Medications, Treatments, Therapies section of the board and read the post titled "123 Days PF and I Think I Know Why", and the post "Anti-Inflammatory Regimen and Survey". It's a simple Vitamin D3 regimen that's helping too many of us to be ignored...a long read, but well worth your time.

-dvb

FIRST.....
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
=================================
Second, find a doc who treats Cluster and establish a relationship. That you have only been given Pred means the doc who treated you doesn't know how to handle Cluster.
----
The Pred stops attacks within hours; it's an ER response but can't be used for more than a few days.

WHILE taking the Pred, you should have been started on a med which is used for long periods to reduce/prevent attacks. It takes a number of days to become effective and so the Pred gives shortterm protection.

Finally, you should get an abortive--a med which quickly kills an attack which comes thru regardless of the preventive med.

We are talking abou developoing a package deal which works for your body. Takes some time and trials to create the best mix and this is where a good doc is essential.
====
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.
======
Essential that you start learning about Cluster. Self-protection comes from knowledge.
--

Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
---

Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
-------
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
============
At this stage, the article is too complex for you bu sugget you print it out and file away for future learning AND as a tool to guide discussions with the doc who treats you. See PDF article, below.
=====
Finally, don't try to self-diagnose and self-treat yourself basedon what you read here. This is a complex area of medicine and a well trained headache doc is the foundation for dealing with a condition which will be with you for some time.

---

We understand being scared. CHs are a scary thing given their intensity and unpredictability. And no, there is no cure. The good news is we pretty much all have found one way or another to combine meds and O2 with otc's to keep the beast on a leash. It takes time and trial and error for you to find what is going to work but you must be patient and persistent. You will find a combo that works for you. In meantime put O2, energy drinks and D3 regimen at the top of your list. They really do work. Blessings. lance

I'm from Milford, CT. 

Got in with a good Neuro who knows her stuff.  Back on the Pred, while also taking Verapamil (120 MG twice a day) with Imitrex on ready 5 for when I feel like CH coming on.  Feel great now - Pred works fast.  Hoping the Ver prevents and I'll come off that if PF for 3 months.  Hoping for the best. 

240mg a day of Verapamil is a pretty low dose. Most people get relief between 360 and 480mg a day but for some they need to go up to 1000mg a day.

Good that you've imitrex. Are these the injections? And any chance of getting oxygen?

240mg a day of Verapamil is a pretty low dose. Most people get relief between 360 and 480mg a day but for some they need to go up to 1000mg a day.

Good that you've imitrex. Are these the injections? And any chance of getting oxygen?

You've gotten some great advice so far, and your neuro sounds golden, on a great track to help you out. Just two pieces of advice:

Do try the vitamin/anti-inflammatory regimen in the "123 pain free days" link. Helping well over 70% of the people who try it, and it's good for you even without CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Read this link and make sure you're getting the max benefit from your 02.

Joe

Hi Joe,

Thanks for the response.  I did go out and get the supplies for the vitamin/anti-inflamation regimen, but I forgot to mention that to my doc.  You see any problem with taking those vitamins with the Verapamil I'm currently on or should I wait till I come off?

Thanks a lot.

No problem at all, that's one of the beauties of the D-3 regimen, no interactions with our meds.

Joe

I am the same as you...My last cluster was 5-6 years ago and then bamb hit me in late April and I had them for almost two months strait. Prednisone didnt work for me this time around. I went back on 100mg of Topamax (stops erratic firing of nerves in your brain) prescribed by my Neurologist. After 3 days they were gone. Since June 9th I have been free. Knock on wood! They never know if its the meds that are working or something else but the Topamax works well for me. I tried Imatrix but my blood pressure and anxiety are so high when I got them I would feel like I was having a heart attack. I had anxiety about taking anxiety meds! I cant imagine being those that get them all year long because I still have a fear every day that IM going to get one!