Hi all I am not new to the site but its been a while since I was here last (5 - 6 years) and I was unable to sign in so i re joined.
My husband is a CH sufferer~ diagnosed approx 5 - 6 years ago but has been having them since a teenager 18ish years~  and has been on many medications (Tegretol, Deseril, Indomethacin, Maxalt melts)...The Deseril seemed to help last cycle but are not doing anything this cycle. Anyhoo he went back to our local Dr today who took out all his medical journals got on his computer and told him he thinks he may have "Trigeminal Neuralgia"... Not CH???
I of course have googled this condition and it has to do with the 5th Cranial nerve being the Trigemial nerve....
My question is...Has anyone else been diagnosed/misdiagnosed with this prior to being diagnosed with CH as the medications seem to be very similar and the doc has put hubby back on the Tegretol???

Hello
new diagnosis. Well I had a "cluster cycle dec 09 till aroung april 2010 and had "shadows" ever since. But after the cycle was under control i still had what we call "shadows" on the right side of my head (cluster side)when I saw a new head\ache specialist may 2010 he diagnosed me with hermicrainia continua which is similar to cluster , that was in florida I was put on indomethicin which helped. I moved back to nyc this past march and met my new headache specialist and he was treating me with indomethicin also then the "shadows started to increase even on a high dose 200 mg of indo . Indomethicin is # 1 linr prevent fro hermicrainia and if it stopped of doesnt work the docs basically rule out hermicrainia and he diagnose me 2 weks ago with cluster.Even though I am not being hit with "headbangers" that could be the indo helping but I stopped the indo am on a pred taper now on my last 4 days and started verapamil at the same time so we will see. I hoep this makes sense to you and helped a bit bt I guess what I am saying is yes sometime diagnosis can be difficult and WE as sufferers are our best advocates.
all the best
Anthony
pm me if i could help more

Your experience is very common. Most docs have very little education in headaches and less effective experience. So much of our work here is providing medical infromation/guidance to CH folks in hopes that their docs will accept it and learn how to effectively treat their patients.

IF you have the option, finding a headache specialist would be the best step. You can save much time and pain by finding a skilled doc. (Some of your countrymen will respond with guidance on how to...)

These suggestions are geared to the U.S. but you may find some suggestions helpfull:

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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For your benefit--and to share with your presend doc, should you have to stay with him.... Print out and start your own file.
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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]
=====

A couple of 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
and
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
======================
Print out the PDF file, below. It's the most current evaluation of meds for Cluster.
=====
This book is a bit out of date but excellent background information:

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.
(the second title is good, and less expensive; first title aimed at docs but not out of reach for a confident lay person.)

---

oops that was meant to be "Trigeminal Nerve"....

Thanks Anthony & Bob, I guess seeing a Neuro will be his next step.
He has had an MRI in the past (when he was diagnosed in hospital) and this Nerve didnt show up as a problem,so Im not convinced its not CH. Will give the Tegretol another go and hope for the best.
I have noticed alot of sufferers use cold compress or need to cool their head when they have an "attack" but my husband needs to and does anything he can to keep his head/face warm??? Is this common?

Thank you for your Info Bob, I read the ref below with much interest

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]

thawk wrote on Jul 29^th, 2011 at 10:12am:

... .but my husband needs to and does anything he can to keep his head/face warm??? Is this common?

Yes, it's quite common, and some of us even take ice packs into a boiling hot shower. (Frozen peas are our friends.)

Welcome home.

  Hello & thanks for being a supporter.

  I used to use heat . . . (knotted white cotton socks filled with rice & heated in the microwave . . . forms to your face/neck nicely) . . . or immersed in very hot tub.

  Now I prefer the ice (gelpacks) . . . which I keep moving around the affect area.  For me, leaving it in one place caused an additional shot of pain, but keeping it moving seems to help abort if I haven't stopped the ramp in a few minutes on the 02.  Lately my hits are ramping so fast I don't wait those few minutes. . . . hit the 02, slug some energy drink in-between the inhales & keep rubbing the gelpacks on my right side.

  He DOES have 02, doesn't he?

    Be Safe,   PFDANs

      Richard

Thanks RichardN, No he doesn't have 02 but have told him repeatedly to try it! I went out and bought him a thermal beanie for the warmth!
Aussiebrian, you were so helpful to us when he was diagnosed and here you are again I hope you are well  :) 

the oxygen flow is higher than used for other problems & if the dr hasn't had experience with cluster headache, it would be helpful to print out & take with you an article showing a minimum flow usage of 8 to15 recommended. The Kaiser site only shows it at 7 or 8, and it works for some, but higher is better.

Hey Charlotte,

You're so very right...  When it comes to oxygen therapy...  More is almost always better...  more reliable and with much faster aborts...

25 liters/minute is a good starting point and it's the minimum flow rate that supports hyperventilation...  although there  are precious few neurologists brave enough to write an Rx for a flow rate that high... 

Many of us have found an oxygen flow rate of 40 liters/minute is optimum...  It pushes the circulatory system into a good case of temporary respiratory alkalosis with pronounced paresthesia and it produces the fastest aborts possible at a sustainable flow rate... 

60 liters/minute produces even faster aborts, but most of us are unable to sustain an oxygen flow rate this high for more than 30 seconds without getting pooped out...  At that point we can't keep up with the flow rate and start wasting oxygen.

The breathing technique is an equally important part of oxygen therapy as an abortive for our CH.  Breathing at forced vital capacity tidal volumes is the fastest method of breathing to push your system into respiratory alkalosis. 

Doing an abdominal crunch at the end of the exhalation cycle and holding the squeeze until the exhaled breath makes a wheezing sound for a couple seconds squeezes out an additional half to a liter of breath. 

As the end-tidal flow of breath has the highest CO2 concentration, breathing with this technique pumps CO2 out of the lungs and bloodstream much faster than it's generated through normal metabolism...  That increases arterial pH, stimulates a more pronounced vasoconstriction, and that makes the abort come even faster...

Howz things near Crow's Landing?

Take care,

V/R, Batch

I was treated for CHs with trigeminal involvement. The pain was actually quite different and the trigeminal was actually much worse if you can imagine it. While I do not have the same symptoms anymore (treatment was the same for both) the absence of things like an electrical net dropping over my head, or the icy telephone pole cruising from temple to temple, or any of the other wondrous pains associated with trigeminal nerve involvement came as a massive relief. Now I deal with CH pain exclusively and to be honest, I am much relieved. Blessings. lance

Thank you all for all your advice, Hubby has been to a Neuro and had a CT scan and they sent him on his way with another different lot of meds which are not working (not a surprise really but they made him try this lot before they would consider 02).. He is now off to get a script for the 02 tomorrow. This is the longest and hardest cycle he has ever had.

Sorry it's been such  a battle for the 02, sadly yours is a common tale. Do review the oxygen info link, as it must be used correctly to get the maximum benefit. Crossing my fingers for ya!

Joe

Thank you Joe. My husband will be telling the doctor to get on this site when he is there tomorrow, I have told him not to leave his office until he reads the Oxygen Info link :)

thawk wrote on Sep 19^th, 2011 at 8:40am:

Thank you Joe. My husband will be telling the doctor to get on this site when he is there tomorrow, I have told him not to leave his office until he reads the Oxygen Info link :)

Way to be proactive, thanks for being a strong supporter to my CH brother. [smiley=hug.gif]

Joe

You need to be respectful of the neuro's time as well. Perhaps printing some of the main parts of the O2 link and giving to him to read when he has the time....

I know I'd rather have the doc's full attention focused on ME during that short time we're together.

Brew wrote on Sep 19^th, 2011 at 10:32am:

You need to be respectful of the neuro's time as well. Perhaps printing some of the main parts of the O2 link and giving to him to read when he has the time.... I know I'd rather have the doc's full attention focused on ME during that short time we're together.

Wasn'tyour last appointment with a proctologist?

      Potter

               

Potter wrote on Sep 19^th, 2011 at 10:38am:

Wasn'tyour last appointment with a proctologist?       Potter

Nope. Dermatologist. The time before that was for colonic inspection with a camera.

Either way, I still want 100% of the doc's attention while we're together. He can read after I'm gone.

Brew wrote on Sep 19^th, 2011 at 11:03am:

Potter wrote on Sep 19th, 2011 at 10:38am: Wasn'tyour last appointment with a proctologist?       Potter Nope. Dermatologist. The time before that was for colonic inspection with a camera. Either way, I still want 100% of the doc's attention while we're together. He can read after I'm gone.

Close........no cigar.

          Potter