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1st post and Question (Read 1115 times)
jmac
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1st post and Question
May 23rd, 2010 at 6:11am
 
First I have to say that this website has been a lifesaver.  It was so hard having theses headaches and feeling like I was the only one in the world that had them.  To finally be able to give it a name was so important.  When i had episodes before, I really used to freak out and pace and rock and just totally lose it... Now, knowing what is going on, I handle these much better.  Sometimes I think that the more I freak out, the worse they become... but not sure about that.  About me:
1.  Male
2.  31 years old
3.  Episodic
4.  Always in the spring for 2 or so months
5.  Always on left side
6.  Started when I was 23

Anyway, my big question is:  Is the nasal drip the cause of the headache, or is the headache the cause of the nasal drip?  I have been thinking while laying down sleeping the build up of fluid is getting trapped and causing the intense pressure and that I have to get it out... and until it is gone, the headache will remain.  But, every time I blow it out, The pain level increases... but then seems to go back to where it was...  I just don't know if I should be so focused on the fluid or not.  I have been drinking water constantly to try to stay extremely hyrdrated... so far... not helping...

A final note:  I wish we could find the one common tie that binds us so we could find the cure!  It must be related to pollen right?  I get these every spring and thats it...  I work in construction so there is always alot of dust around...  I am very healthy, 180 lbs. 6'-0"  I have a few beers no more than 3 times a week (not right now!)  Then there is the question of sleep apnea...  Could that be part of the problem?  Not getting enough O2?  I find that I wake up alot in the night even when not having an episode. 

Sorry for the long random post.  But seriously... so thankful for this site...  I really freaked out alot more b4 i knew there was support.  I was angry... mean to my wife.. etc.  Now i manage them better.  man i hope this episode ends soon...  These short painful nights are wearing on me.
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neuropath
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Re: 1st post and Question
Reply #1 - May 23rd, 2010 at 6:42am
 
You will find that the nasal congestion is the result of CH and not the other way round. Unless you have a separate sinus issue, the congestion generally disappears after an attack.

To my knowledge there is little evidence that directly links pollen or allergies to CH. Notwithstanding, if you are suffering from hay fewer or allergies, it will be helpful to treat them separately, given that they certainly could aggravate your CH. In this case, you might want to discuss with your doctor if anti-histamines are an option. Some people have also had some relief from anti-histamines for CH, though they have generally not proven to be silver bullets.

Sleep Apnea is also something you want to address. Not because its the cause of CH, but because oxygen undersupply at night is most certainly not helpful for many aspects of your health, including CH.

Before going for surgery however, I recommend that you take a polysomnogram in order to determine O2 saturation and whether your apnea warrants surgery. There is anecdotal evidence that apnea surgery and the required anesthesia have brought on CH or episodes for people and I would therefore only go for surgery if the clinical results are rock solid.

If you haven't already, I suggest that you familiarise yourself with O2 as abortive treatment. Lifesaver for many. You can read all about it by clicking the "oxygen info" tab on the left.
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Bob Johnson
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Re: 1st post and Question
Reply #2 - May 23rd, 2010 at 9:29am
 
Headache. 2003 Mar;43(3):282-92.
Erratum in:
Headache. 2004 Apr;44(4):384.

Clinical, anatomical, and physiologic relationship between sleep and headache.

Dodick DW, Eross EJ, Parish JM, Silber M.

Department of Neurology, Mayo Clinic, Scottsdale, Ariz. 85259, USA,

The intimate relationship between sleep and headache has been recognized for centuries, yet the relationship remains clinically and nosologically complex. Headaches associated with nocturnal sleep have often been perceived as either the cause or result of disrupted sleep. An understanding of the anatomy and physiology of both conditions allows for a clearer understanding of this complex relationship and a more rational clinical and therapeutic approach. Recent biochemical and functional imaging studies in patients with primary headache disorders has lead to the identification of potential central generators which are also important for the regulation of normal sleep architecture. Medical conditions (e.g. obstructive sleep apnea, depression) that may disrupt sleep and lead to nocturnal or morning headache can often be identified on clinical evaluation or by polysomnography.

In contrast, primary headache disorders which often occur during nocturnal sleep or upon awakening, such as migraine, CLUSTER HEADACHE, chronic paroxysmal hemicrania, and hypnic headache, can readily be diagnosed through clinical evaluation and managed with appropriate medication. These disorders, when not associated with co-morbid mood disorders or medications/analgesics overuse, seldom lead to significant sleep disruption. Identifying and classifying the specific headache disorder in patients with both headache and sleep disturbances can facilitate an appropriate diagnostic evaluation. Patients with poorly defined nocturnal or awakening headaches should undergo polysomnography to exclude a treatable sleep disturbance, especially in the absence of an underlying psychological disorder or analgesic overuse syndrome. In patients with a well defined primary headache disorder, unless there are compelling historical or examination findings suggestive of a primary sleep disturbance, a formal sleep evaluation is seldom necessary.

PMID: 12603650
============================================

Cephalalgia. 2005 Jul;25(7):488-92.

Investigation into sleep disturbance of patients suffering from cluster headache.

Nobre ME, Leal AJ, Filho PM.

Department of Neurology, Universidade Federal Fluminense, Niterói, Brazil. menobre@rjnet.com.br

The new discoveries relating to cluster headache (CH) encouraged the study of the relationship of the hypothalamus to respiratory physiology and its comorbidity with sleep apnoea. The question is whether the apnoeas are more frequent during REM sleep and the desaturations could be involved as triggers of the cluster attacks. Furthermore, could the connection with the hypothalamus, already proved, be responsible for an alteration in the structure of REM sleep and a chemoreceptor dysfunction. We set out to analyse when polysomnography investigation is necessary in patients with CH. We studied 37 patients suffering from episodic CH, 31 (83.8%) men and six (16.2%) women. For the control group, we selected 35 individuals, 31 (88.6%) men and four (11.4%) women.

There was a greater percentage of obstructive sleep apnoea (OSA) in patients with CH (58.3%) compared with the control group (14.3%) and with the general population (2-4%). In cases of pain during sleep, the majority is deflagrated during the REM phase, following a desaturation episode. A stratified analysis of the apnoea/hypnoea index relating to body mass index (BMI) and age showed that patients with CH have 8.4 times more chance of exhibiting OSA than normal individuals (P < 0001). This risk increases to 24.38 in patients with a BMI > 25 kg/m(2) and increases to 13.5 in patients > 40 years old. Surprisingly, the risk decreases sharply in patients with a BMI < 25 kg/m(2) and who are < 40 years old. Due to the fact that polysomnography is a complex, costly and sometimes difficult examination, we suggest, in concordance with the results, that it should be carried out routinely in patients with CH that exhibit a BMI of > 25 kg/m(2) and/or in patients who are > 40 years of age.

Publication Types:
Clinical Trial
Controlled Clinical Trial
PMID: 15955035 [PubMed]
=====================================

Headache. 2006 Oct;46(9):1344-63.
Headache and sleep disorders: review and clinical implications for headache management.

Rains JC, Poceta JS.

Center for Sleep Evaluation, Elliot Hospital, Manchester, NH 03103, USA.

Review of epidemiological and clinical studies suggests that sleep disorders are disproportionately observed in specific headache diagnoses (eg, migraine, tension-type, cluster) and other nonspecific headache patterns (ie, chronic daily headache, "awakening" or morning headache). Interestingly, the sleep disorders associated with headache are of varied types, including obstructive sleep apnea (OSA), periodic limb movement disorder, circadian rhythm disorder, insomnia, and hypersomnia. Headache, particularly morning headache and chronic headache, may be consequent to, or aggravated by, a sleep disorder, and management of the sleep disorder may improve or resolve the headache. Sleep-disordered breathing is the best example of this relationship. Insomnia is the sleep disorder most often cited by clinical headache populations. DEPRESSION AND ANXIETY ARE COMORBID WITH BOTH HEADACHE AND SLEEP DISORDERS (ESPECIALLY INSOMNIA) AND CONSIDERATION OF THE FULL HEADACHE-SLEEP-AFFECTIVE SYMPTOM CONSTELLATION MAY YIELD OPPORTUNITIES TO MAXIMIZE TREATMENT. This paper reviews the comorbidity of headache and sleep disorders (including coexisting psychiatric symptoms where available). Clinical implications for headache evaluation are presented. Sleep screening strategies conducive to headache practice are described. Consideration of the spectrum of sleep-disordered breathing is encouraged in the headache population, including awareness of potential upper airway resistance syndrome in headache patients lacking traditional risk factors for OSA. Pharmacologic and behavioral sleep regulation strategies are offered that are also compatible with treatment of primary headache.

Publication Types:
Review
PMID: 17040332 [PubMed]
======================================

Cephalalgia. 2008 Feb;28(2):139-43. 
Refractory chronic headache associated with obstructive sleep apnoea syndrome.

Mitsikostas DD, Vikelis M, Viskos A.

Athens Naval Hospital, Neurology Department, Athens, Greece. dmitsikostas@ath.forthnet.gr

The aim was to investigate the comorbidity of chronic refractory headache with obstructive sleep apnoea syndrome (OSAs). Seventy-two patients (51 women and 21 men) with chronic and refractory headaches, whose headache occurred during sleep or whose sleep was accompanied by snoring, were submitted to polysomnography. Patients diagnosed with OSAs (respiratory disturbance index > 10) began continuous positive airway pressure (C-PAP) treatment and were followed up for >or= 6 months. Twenty-one cases of OSAs were identified (29.2% of the total investigated, 13.7% of the women and 66.6% of the men). Headaches were classified into several headache disorders, medication overuse headache and cluster headache being the most prevalent (nine and six of the 21 cases, respectively). In one case (1.4% of the total sample, 4.7% of all the men), the criteria for hypnic headache were fulfilled. Multivariate regression analysis revealed that age, male gender and body mass index were associated with OSAs. C-PAP treatment improved both sleep apnoea and headache in only a third of the cases. Patients suffering from chronic refractory headache associated with sleep or snoring, in particular those who are also middle-aged, overweight men, should be considered for polysomnography. C-PAP treatment alone does not seem to improve headache, but further investigation is needed.

PMID: 17999682 [PubMed]
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Bob Johnson
 
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Guiseppi
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Re: 1st post and Question
Reply #3 - May 23rd, 2010 at 9:56am
 
Welcome to the board...yeah....your sentiment is awfully common...sorry you guys have it too but thank God I'm not alone! A couple of quickies off the bat!
You can't cure it, but you can manage it. Don't waste too much time looking for causes. I cured my CH by stopping the use of q-tips in my ear, getting glasses, by giving up coffee, by waking up really early every day......years later when I finally recognized what a "cycle" was I realized I was just trying dumb stuff after dumb stuff and they were ending on their own. All that being said...

I'm 50, male, 31 year sufferer, episodic. When a cycle starts I go on a 10 day prednisone taper while I start my Prevent, Lithium. A preventative med is one you take while on cycle to reduce the frequency and the intensity of your attacks. Verapamil is the most common first try prevent, Topomax is also popular. The Prednisone provides complete relief for many but shouldn't be taken long term due to side effects.

Then you need a good abortive med. The attack is starting, now what? Read the oxygen info link on the left. I can stop an attack in its tracks in less then 10 minutes just by huffing pure 02. Beats the 90 minute to 2 hour attacks I used to suffer! Imitrex injectables are my last resort as I hate how they feel and many people are starting to believe the triptans will extend a cycle.

I get the droopy eye and the runny stuffed nose too. More a sign of then a cause. If you haven't tried energy drinks yet give them a shot. I use Sugar Free Red Bull but any containing caffeine and taurine will work. Chug one down at the first sign of an attack. Many can abort or reduce an attack that way.

You have a lot to learn. Most docs know very little about CH so it's your job to educate yourself and help them help you.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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bejeeber
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Re: 1st post and Question
Reply #4 - May 24th, 2010 at 3:29pm
 
Just echoing an agreement here with the others that pollen, nasal drip, etc. are not the cause.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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djphrenzy
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Re: 1st post and Question
Reply #5 - May 24th, 2010 at 3:36pm
 
In my first cycle five years ago I went through the whole 'routine causes' bit as well... glasses, teeth, sinuses, allergies, etc.

I find a lot of people want to simplify it into a statement like 'you're probably just not getting enough sleep or something.'

It can be very confusing and frustrating to not have a name to put on it.
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« Last Edit: May 24th, 2010 at 3:40pm by djphrenzy »  
 
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jmac
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Re: 1st post and Question
Reply #6 - May 24th, 2010 at 4:38pm
 
Thanks for all of the responses and suggestions.  If this cycle doesnt end soon, I am going to pursue the oxygen mask.  This cycle started on 4/26 so it has almost been a month.  I hope it ends soon...  I am exhausted... walking around work like a zombie... I'm pretty depressed to be honest.  Every night this week it has hit at 330 or 4 in the morning.  I'm just really tired... and yet... i don't look forward to sleep.  This sucks.  I just wish I knew why it occurs only  in the spring.  It makes me think allergies...
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Guiseppi
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Re: 1st post and Question
Reply #7 - May 24th, 2010 at 6:23pm
 
First 20 or so years, my cycles went spring and fall, 8-12 weeks long, you could almost set the atomic clock by my cycles! Once the whole hypothalamus/circadian clock thing was explained to me, it started making a lot more sense. Prior to that I "cured" my CH by giving up coffee, getting glasses, ceasing the use of Q-tips in my ears on the effected side.....It wasn't until many years later when I started charting cycles I realized my "cures" always occurred about the time my cycle was due to end!

2 things, don't assume since previous cycles went only a month this will. For years my cycles were always 8-12 weeks, then I got hit with an 8 month long cycle followed by a 2 year remission! He likes to play fun and games with you.

Since you're primarily getting hit at night look at Melatonin. An over the counter supplement. start at 3 mg a night and work up to 9-12 mg, just before going to bed. Many can avoid the night time hits that way.

This really is a good time to locate a good headache specialist to work with. Don't wait until you're in the middle of a 16 week cycle when you're getting multiple daily hits. It's hard to be logical at times like that.

Joe
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jmac
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Re: 1st post and Question
Reply #8 - May 24th, 2010 at 7:02pm
 
Thanks for the advice Joe.  I will do it.  Crazy thing is... I am coming off of a 2  year remission!  Three years ago I went to a specialist and he was really great.  We did an MRI and he gave me some other stuff but I can't remember what.  I remember that after I met with him, I never had another one.  But I think it was just the end of the cycle.  I finally went to see a specialist because I was at the end of myself.  One thing he did that amazed me was he cleaned out my ears.  I have never seen so much earwax in my life!  Anyway... after that I was 2 years free.  Now, this year I couldn't believe it when I felt that first shadow.  It was 630 in the morning and lasted till 8.  The max pain factor was about a 7 or 8.  But I actually threw up.  I think from the stress and unbelief that it was happening again.  That has never happened before or since...  Melatonin.  Getting some tomorrow!
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