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Cluster Headache Help and Support >> Cluster Headache Specific >> What is normal for CH?
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Message started by Kit on Oct 8th, 2008 at 7:06am

Title: What is normal for CH?
Post by Kit on Oct 8th, 2008 at 7:06am
Hello, everyone,

My name is Kit and my hubby Chris has just been diagnosed and this is his first cycle. It's been 4 weeks and he has had 4 days with no headaches, just 2 shadows... I made a graph of his cycle so far and I think he may have hit a peak a week ago (most headaches in a 2 day period and most painful). He started on verap on Saturday night, so is it possible it has started to take effect already? Or is it possible his cycle is ending? I know everyone is different but I am wondering if this is "normal". I am trying not to get my hopes up that this could be almost over for a while. I was just wondering if the cycles can taper off until they're done... Thanks.

Title: Re: What is normal for CH?
Post by Guiseppi on Oct 8th, 2008 at 8:47am
It probably is a little early for the verapamil to be taking effect but not out of the question either. While almost NOTHING is normal, my CH used to ramp up to a max, then slowly cycle back down. Others have posted that theirs START with a kip 10 and end with a kip 10! Nothing morphs as fast as CH or contains so many suprises.

Does he have oxygen yet for his attacks? I can abort an attack in less then 10 mnutes using oxygen. It's having an incredibly high success rate on the board so certainly worth a shot.

By the way,  [smiley=hug.gif] [smiley=heart.gif] for being a supporter. You guys have a tough road helping us out and we don't always remember to tell you how much we love you for it, but we do! ;)

Guiseppi

Title: Re: What is normal for CH?
Post by BarbaraD on Oct 8th, 2008 at 4:15pm
I echo Joe's thoughts on being a supporter. Ya'll just don't get enough praise. Bless you..

And "nothing" I've ever seen is "normal" with CH. Hopefully your hubby is almost out of cycle and won't get another for a long time, but .... who knows. The beast has a mind of its own.

Check on the O2 -- it's wonderful.

Welcome to Clusterville.

Hugs BD

Title: Re: What is normal for CH?
Post by MPMIII on Oct 8th, 2008 at 5:31pm
Kit,

Verapamil starts working for me in about 3-4 days.  I know that this is not the norm, but it is possible.   When I get off of the verapamil it only takes about 2 days for my hits to come back with a vengence.  Kind of like he was pissed off and looking for revenge.  Best of luck to you and your husband.  Oh, and you will soon find out that there is nothing "normal" about CH.

Malcom  

Title: Re: What is normal for CH?
Post by Kit on Oct 9th, 2008 at 7:01am
Hi, I think I have figured out that nothing will be "normal" ever again, but we will adjust. So now, no CH since last Friday, which I am so grateful for, but Chris still has a hard time waking up every morning and feels exhausted for the first hour that he is up. Does that happen to anyone else even when you haven't woken up with the beast? How can you tell when your cycle is over, meaning how many pain free days in a row? Chris's neuro said to take the verap until he has gone 2 weeks without any headaches...does that seem about right? Chris also wants to know because he is dying for a BEER and hasn't had one since he suspected CH (almost a month).

Title: Re: What is normal for CH?
Post by Just Plain Carl on Oct 9th, 2008 at 7:30am
Yep, normal is out the window however similar our symtoms are.  Bless you and your husband.  I feel very sorry for you supporters.  I know my poor wife feels completely helpless and there is not much I can do for her other than reassure her that just being there helps tremendously.  Close friends and other family members also are affected.  They are all genuinely concerned but really can't comprehend what one is going through.
    Anyway,  my supreme test (after 2-3 weeks of being completly PF)
is the sure fire Beer Test.  Man does that first one taste good.  And if thats cool after an hour or so, the next 10 really taste good.
                    Good Luck to you guys
                          Just Plain Carl

Title: Re: What is normal for CH?
Post by Bob_Johnson on Oct 9th, 2008 at 7:51am
Variation/multiple changes in the CH experience is quite common when CH is starting to show itself. Not uncommon, for example, for the primary site of pain to change for months, even years, before settling down to a (more or less!) fixed pattern.

At this early stage, I'd encourage you to read and learn. Trying to keep records of attacks won't give you much useful data and it tends to increase the tension/anxiety.

Explore the buttons (left) and the internal links as a starting point.
==========
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.
--------------------------------
Headache. 2006 Sep;46(:1246-54.  
 
Cluster headache: clinical presentation, lifestyle features, and medical treatment.

Schurks M, Kurth T, de Jesus J, Jonjic M, Rosskopf D, Diener HC.

Background.-Cluster headache (CH) is a rare but severe headache form with a distinct clinical presentation. Misdiagnoses and mismanagement among these patients are high. Objective.-To characterize clinical features and medical treatment in patients with CH. Methods.-We established a cohort of 246 clinic-based and non-clinic-based CH patients. The diagnosis of CH was verified according to International Headache Society (IHS) criteria. We used standardized questionnaires to assess associated factors as well as success or failure of treatments. Results.-The majority (75.6%) was not treated before at our clinic-77.6% were males; 74.8% had episodic CH, 16.7% had chronic CH, in the remaining patients, the periodicity was undetermined because they were newly diagnosed. Cranial autonomic features were present in 98.8%, nausea and vomiting in 27.8%, and photophobia or phonophobia in 61.2% of CH patients. Most (67.9%) reported restlessness during attacks and 23% a typical migrainous aura preceding the attacks. The rate of current smoking was high (65.9%). Half of the patients reported that alcohol (red wine in 70%) triggered CH attacks. Eighty-seven percent reported the use of drugs of first choice (triptans 77.6%, oxygen 71.1%) with sumatriptan subcutaneous injection being the most effective drug for acute therapy (81.2%). The most frequently used preventive medications were verapamil (70.3%) and glucocorticoids (57.7%) with equally high effectiveness. Conclusions.-Apart from the IHS criteria additional features like nausea/vomiting and migrainous aura may guide the diagnosis of CH. A large number of CH patients do not receive adequate treatments. (Headache 2006;46:1246-1254).

PMID: 16942468  
---------------------------
 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the best overview articles I've seen. Suggest printing the full length article 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]
-------------------------------

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
============================================

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
1535 Lake Cook Rd.
Suite 506
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.




Title: Re: What is normal for CH?
Post by Kit on Oct 9th, 2008 at 5:40pm
Thanks Guiseppi & BD & everyone for the kind words and excellent advice. Carl, I told Chris about your beer test and he said he will definately try that after 2-3 weeks (he really wants a beer but he said the hour of waiting will be hell as he will dread the headache)...
I've said it before and I will say it again - thank god I have found you people! :)

Title: Re: What is normal for CH?
Post by jon019 on Oct 9th, 2008 at 8:38pm
yup...cycles do taper for many...As for "normal"...have yet to see that...

thanks for being a great supporter...better than any med...

Best

Jon

Title: Re: What is normal for CH?
Post by mezza on Oct 9th, 2008 at 9:46pm

Kit wrote on Oct 9th, 2008 at 7:01am:
So now, no CH since last Friday, which I am so grateful for, but Chris still has a hard time waking up every morning and feels exhausted for the first hour that he is up. Does that happen to anyone else even when you haven't woken up with the beast? ).



I take verapamil while in cycle as well.  It made me virtually pain free a great thing and much needed.  However,  I was so exhausted all the time while taking it.  I took 660 mg a day.  Even after my tapering slowly off of Verapamil,  it took me about a month or a month and a half to really get my energy back. I was still very tired after waking up and in the late afternoon as well.    My memory slowly came back too.  At least I think it has?

Glad to hear your hubby has gotten some pain free time.  Isn't that the best?

Kelly

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