Hi folks,
My name is Jamie and I live in Houston, Texas. I'm a new sufferer to cluster headaches as I just started having them April Fools Day(though these are no joke). I am really happy to find this site as I'm really scared and uninformed about CH. I've been having anywhere from 2 - 4 episodes a day. I've just seen a nuerologist yesterday and was relieved when she could identify my condition. From some posts I've read, a quick diagnosis does not always seem to be the case. I'm really interested in learning if there are any other sufferers in Houston, places and doctors they can recommend, and techniques or ways of just getting through an attack.
Any help would be appreciated.
Thanks in advance,
Jamie

Hi Jamie,

Here are some "sufferer recommended" doctors in the Houston area.

Houston:
Dr. Howard S. Derman
Methodist Neurological Ins9tute
Dr. Herbert P. Edmundson, Jr.
Memorial Neurological Association
Dr. Leonard Hershkowitz
Houston Neurology Associates
Dr. Ninan T. Mathew
Houston Headache Clinic
Lori Meadors, PA
Houston Headache Clinic
Longview:

As far as techniques and ways of treating this condition I suggest you start reading the links to the left of here to start.   I know there's a lot of information to digest, but if...no, when...you have questions we'll all be glad to help you sort through it. 


You're correct that most folks here went years before getting a correct diagnosis.  You are among the lucky few.   ;)


Linda

Hi Jamie and welcome to the forums, but sorry you had to come looking for us.

You did incredibly well getting to see a neurologist and obtaining a diagnosis so quickly, for many people it takes a few years before CH is diagnosed.

In finding this site you're well on the way to becoming very, very informed about CHs as you can benefit from the experience of people on here who together have seen countless neurologists, tried many, many treatments and are more than happy to share their knowledge. With this knowledge you can start to replace your fears with understanding.

You didn't provide any details about what medication your neurologist gave you but in treating CH there is a two pronged approach. The first is to try to prevent CHs from happening and the second is to abort a CH when it starts.

The first preventive most people are given is prednisione in a taper dose, starting at around 60mg a day and tapering off to nothing over about 7-14 days. This can be very effective at stopping CHs, but you can only use it short term as it can have significant side effects if taken for long periods of time.

Whilst on the prednisione you need to start another preventive which is gentler on your body but they take about 10 days or so to build up. This means that the longer term one will have built up by the time the prednisione is finished.

Verapamil is probably the most commonly used preventive, with a dose of 360-480mg a day being effective for most people, although some people go as high as 1000mg. Always work with your doctor on changing doses. Other commonly used preventives include lithium and topomax.

For preventing night time hits people have found that melatonin, starting around 9mg, can be effective too.

Others are having success with a combination of vitamin D, fish oil and magnesium.

Once a CH arrives you can abort it instead of having to ride it out. Oxygen when used at a high flow rate (15lpm or higher) using a non-rebreather mask is an excellent way to kill CHs. Using 25lpm I average killing my CHs in about 6 minutes. Read the link on the left to find out more about oxygen.

Imitrex injections (not tablets) are also effective in killing CHs in a few minutes although they are expensive and can have side effects. Read the link on the left to make the injections last longer.

Another thing to try is energy drinks containing caffeine and taurine, like Red Bull, which when drank quickly at the start of a CH can reduce the duration and intensity of an attack.

There is a lot for you to learn, so get reading and asking questions.

Jamie,
Glad to see that some doctors can diagnose in a reasonable amount of time! Check out the "123 days PF and I think....." post in "Medications, Treatments..." for a possible alternative to conventional medications. Many have had some success and trying will only cost you $15 or so. Good luck with finding a treatment and I'm glad you found the site for help.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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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]
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Explore the buttons, left, starting with the OUCH site.
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See PDF file, below.

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Hey folks,
Sorry it's taken me so long to reply back but I have had a a couple of bad days with these headaches. Won a trip to the ER where even though they give me strong pain meds and as I so lovingly put it, Treat me and street me.

The meds I'm taking are verapamil 240 mg, indomethacin 50 mg, maxalt 10 mg, butalbital/apap/caffeine (no mg on bottle).
These do not work. At all. I don't understand all the medicines and the lingo, but I know that I have nothing really for the pain when an attack hits and I have to ride it out. Yesterday I had a severe attack at 12:12 pm and it lasted for 3 hours and the shadows lasted for another 5.
My next dr appointment is this friday and I am going to beg her for something to stop the pain. The thoughts I have when I have an attack scare me when I think about them later.
I'm going to also try the vitamin d and fish oil. Anything that can help I will try.
So thank you for your replies and I look forward to reading more on other topics.
jamie

Why no oxygen?   No bullshit. It really works.

       Potter

            

I think my dr is starting me off slowly on meds. But I'm going to really insist on it this friday. Also is this imetrix worth asking for?

oltwitchy wrote on Apr 18^th, 2011 at 12:49pm:

I think my dr is starting me off slowly on meds. But I'm going to really insist on it this friday. Also is this imetrix worth asking for?

I'm not big on any of the drugs the Docs. prescribe.  They call it practicing medicine for a reason.  In the end it is your call.

            Potter

oltwitchy wrote on Apr 18^th, 2011 at 12:49pm:

I think my dr is starting me off slowly on meds. But I'm going to really insist on it this friday. Also is this imetrix worth asking for?

Imitrex injections (not pills) certainly are a powerful abortive for most of us. I don't experience side effects with them, but many do, which is one of the reasons high flow non rebreather O2 is so wildly popular around here.

Personally I make sure to have some imitrex injections on hand for a backup, but use O2 as my primary abortive.

Hi,

I'm new here but not new to cluster. I was 16 when the first real one hit me. I think I had them before but they came on slowly and were just always with me at some level. But, my first real headbanger hit when I was 16. It slowly developed into a severe sinus infection. Just the beginning of my sinus infections that were constant. Finally after dozens of doctors at the age of 52 I sat down in the chair at my allergist with a level 8 or 9 headache and she started out with, "you don't look like you feel good". Understatement, but she asked me to describe the headache. To which she declared you aren't describing a sinus headache you are describing a migraine. I was promptly sent to a neurologist. Finally four neurologists later I have some relief but, not until I suffered some really bad times.

To make a long story short I have clusters that go 365 days a year, rarely let up. When they or it does it is never for more than a day or two. On the left side. Even when I get relief from the pain I have a feeling like my vision is disturbed stabs of pain and my balance and hearing is affected. I am currently taking indomethacin, ergotamine, and Vimpat. No other drugs have ever worked. Triptans work for less than 24 hours but, since i can't take them that often and not with ergotamine are no help. Medicare won't pay for O2 and I can't pay for it so haven't tried it.

This may be taken as a stupid question but, anybody else have this problem and what helps.

Gary :-/

Hi Gary,

Man that sounds awful - sorry to hear of your several decades long ordeal.  :(

So your more recent neurologists have diagnosed you with CH?

People have put their heads together here and the collective knowledge and experimentation has definitely produced things that will help.

This is more of a 'maybe' than a 'definitely', as it is so new, but you might want to check into the  high dose vitamin D3 regimen that has several CH'ers here reporting that they've found relief. Here's the thread on that subject: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Also, many here use welding O2 in order to minmize the cost and report that it is relatively cheap (I'm not assuming that it is affordable for you though).

The clusterbusters approach isn't for everyone, but the message board over at clusterbusers.com is rife with middle aged chronic CH'ers who are ecstatic to have found relief after the meds had failed them. Here's a Newsweek article about clusterbusters: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

To Jamie & Gary

  OXYGEN!

  Both of you might not have gotten a script for 02 because "insurance won't pay for it".  Next time you see your doc(s), tell him you know insurance won't cover, but you would like a script for it and you'll pay cash.  02 is CHEAP, especially considering the benefits it offers.

  My current GP was advised of my CH when I started seeing him . .  asked if he had any other CH patients, . . . yes, two.  On my next visit I took in my Optimask and advised (again) how effective it was in aborting attacks.

  Last year, there was a (national) news report that the Journal of American Medicine (or American Medical Journal) had reported that oxygen was effective for aborting cluster headaches.  So . . . next appt with the doc, I asked if he was aware of that report . . . his reply, "yeh, but insurance won't pay for it" . . . AARRGH!  Since I've been here, that story has been repeated over and over and gets me "reached" (euphemism for "pissed off") every time.

  Rates vary across the country . . . I'm fortunate to live in an area where the rates are quite low.  I pay $10 per tank,  no deposit, no monthly fee, no limit on tanks (I keep 20).  If you order your regulator from ebay, you can get a 15 lpm regulator for under $30 (the same regulator from the med supply store might run $150).

  Call up your local med supply companies and ask what the cash price for an "E" tank is and if they require a deposit and/or monthly fee . . . even if they do, unlikely to run much more than $20 . . . then tell your doc you want a script for 02 to try it out . . . when you get the script, order your regulator and an Optimask (under $30 . . . link on this site).  My first script read "4 lpm with nasal cannula (the nose thingy . . . mostly useless for CH), but I got the script, which was the important thing.

  About three years ago, there was survey done about 02 costs around the country and I do remember the most expensive was a sufferer who was on Medicare (as I am), and whose doctor had filled out a "letter of medical necessity" which allowed Medicare to pay for his tanks . . .$42.50ea . .  another example of how the system gets shafted.

  Copy info off the site and first request, then if necessary DEMAND a script or referral to another doctor.

  02 works too well for you not to have it in your arsenal.

    Be Safe,   PFDANs

        Richard

Gary - since you're brand new here it should be mentioned that the O2 you're seeing discussed is not the ususal (but very outdated) low liter flow/rebreather O2 that is still widely prescribed by doctors. The oxygen info link to the left outlines the much more effective manner of administering O2.