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How I turned myself into a CH exactly 3 weeks ago. (Read 14469 times)
SingleBreath
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How I turned myself into a CH exactly 3 weeks ago.
Apr 15th, 2009 at 5:07pm
 
I'm a 36 year old Sudanese male, residing in Dubai. My name is Ashraf.

Cutting a long story short, 3 weeks ago I got my tooth removed. For the next 3 days, it hurt. I had it removed because too much puss had accumulted on both sides of my top inner gums, which were swollen to the max.

The fourth night, I got my first attack. It lasted for half an hour. Upon reverting to my dentist, he said it had little to do with my teeth. I ignored the pain and headeed to a preplanned trip to India to go spearfishing.

While diving, I managed to infect both my ears. I got more attacks, still holding my dentist responsible in the back of my mind.

3 visits to local Indian hospitals confirmed I was suffering from ear related infections. I reluctantly stayed off medication until I got back to Dubai, having completed my 2 week trip.

I went back to my dentist, then to 2 ENT's, only to be reassured that they had no clue as to why I feel and look the way I do. Most of them shrugging their shoulders.

Yesterday, one of the dentists said I should see a Neurologist, who broke the news to me much like a virgin on her first night.

Since then, I became more enlightened, yet feel screwed over quite badly, again, much like the aforementioned virgin.

Now, I'm in bed, waiting to be deflowered, over and over again, as always is the case with me. Night time seems to be their favourite time of day.

I still wonder if my CH were self inflicted, but either way, I have my Vaseline ready and by my side.

I wish you all a better night than the one I feel I'm about to have.. Or rather, get..

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Bob Johnson
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #1 - Apr 15th, 2009 at 7:05pm
 
Our first contact with the poetic Middle East...Welcome!

Tell us what the neurologist told you; did he give any medications?

If he said, Cluster headache, this long article will give you some basic information and treatment information.
==========
(Second line for link to the full article.)

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better 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]
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Bob Johnson
 
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Lefty
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #2 - Apr 15th, 2009 at 7:33pm
 
SingleBreath wrote on Apr 15th, 2009 at 5:07pm:


I still wonder if my CH were self inflicted, but either way, I have my Vaseline ready and by my side.


Hi Ashraf,

Unfortunately CH's are just one of life's little nastinesses that affect a small percentage  of the population and are by no means self inflicted.

You are on the other hand very fortunate to find such a warm, welcoming shower of cluster headache experts (without the pay of course) anywhere in the world.

This site has been a life saver for many me included. Take time to look around the site and you shall find a wealth of information on abortive and preventative treatments that you can use to fight back against this infliction.(especially check out the 02 information to your left). Because I think you will need more than just a tub of Vaseline...!

All the best

Lefty....!
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SingleBreath
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #3 - Apr 15th, 2009 at 8:01pm
 
Thank you guys for your welcoming support and info.

The only remedy I have found so far is staying awake, as short-lived a remedy as it may be.

I will try and fall asleep now, confident that your prayers will keep the monster at bay. Only 2 hours ahead of sleep time before waking up for work.

Medicines:
20mg nasal spray sumatriptan
25mg Indocid capsules
240mg Isoptin

Your prayers pls guys..

Here goes nothing..
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SingleBreath
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #4 - Apr 16th, 2009 at 5:07am
 
I got away with 1:40m of peaceful sleep, no more. Used the nasal spray. It helped. The CH lasted for only 20 minutes, then I collapsed for 4 hours. You can call that sleeping, somewhat. 

Stronger prayers needed for tonight pls guys.

Got to work 4 hours late today.
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #5 - Apr 16th, 2009 at 10:21am
 
Welcome to the board, so sorry the beast has taken up residence in your head! Take the time to read the article Bob gave you, it represents the latest and greatest information on CH. Read the "oxygen info" link on the left, complete with pictures to show you the proper set up. Oxygen will abort an attack for me in 6-8 minutes, relatively inexpensive and none of the medication side effects.

Hoping your cycle runs short for you.

Joe
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SingleBreath
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #6 - Apr 16th, 2009 at 11:02am
 
Jo, Lefty n Bob.. Thank you my new Family..

I am indeed very fortunate to have you.

6-8 minutes works for me. The above nasal spray took it away pretty fast as well but the oxygen sounds much better.

Stupid questions are easier to fix than stupid actions, so here I go: is it the same type of oxygen tank set up used by our fellow scuba divers?
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Linda_Howell
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #7 - Apr 16th, 2009 at 12:10pm
 


Here is everything you will ever need to know about oxygen.

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  You were fortunate to have that dentist refer you to a Neuro.  I know some people who have had all their teeth pulled (healthy teeth)  because a dentist convinced them that this was the cause of their pain.


Linda
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #8 - Apr 16th, 2009 at 12:15pm
 
Hey Ashraf,

I am rather new at this also.  Was diagnosed in Oct with clusters... I just got my Oxygen setup.  I am awaiting a better mask than what I was set up with by the oxygen provider, but I think I might be able to partially answer what you ask here.
"is it the same type of oxygen tank set up used by our fellow scuba divers?"
The tank is the only similarity - though the tank is 100% pure O2 of course.  Wink  The yoke for the O2 setup is not a DIN valve or A-Clamp - and the regulator gauge is right on the yoke... no octopus.  The mask gets directly connected by a hose to the regulator.
All of the info and pics are on the oxygen info link to the left here.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

About a third of the way down the page you will see the pics under the tanks.  
As I understand it, the demand mask system is just like the demand flow of the scuba setup - but you don't start out there.  It's an expensive addition -  
haha - just start with a non-rebreather mask that should do the trick just fine.  The flow of the mask - this is a constant rate of oxygen that is provided (unlike scuba.)  15LPM (liters per min) is recommended minimum by all here who have given out advice to me to have available though less works for some.  I just got mine and it aborted my cluster fine.  I am waiting for the better O2Ptimask I just ordered though - the one I got with the tank setup was cheap and let air in.  I had to cover holes and hold it on well while breathing.  Much hassle.   
Read up!  Let me know if I have confused ya here.   Huh hope not, ha

Hope this helps...

Val
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #9 - Apr 16th, 2009 at 12:15pm
 
SingleBreath wrote on Apr 16th, 2009 at 11:02am:
is it the same type of oxygen tank set up used by our fellow scuba divers?


In a word, NO!!!

Scuba divers canNOT use pure oxygen.  It is VERY dangerous for them to dive with pure oxygen.

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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
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SingleBreath
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #10 - Apr 17th, 2009 at 1:16pm
 
Linda, Val n Chuck..

Thank you all for your responses..

I've taken your words to heart and based on the unanimous recommendation by all of you who have been kind enough to guide me around my newly introduced ordeal, I'm setting up my O2 system by Sunday insha'Allah. It has definetly made a difference to all of you evidently.

I'm sorry, but I do have 3 questions:

1. Is it just me or are the medications prescribed above by my neuorolgist causing this feeling of total fatigue I'm having? I'm not in any sort of pain in the day time though.

2. Should I still keep taking these medications and delay the O2 setup for now, incase the Beast decides to pack up and leave for good, or is that just wishful thinking?

3. With so many of us CH in one place, would it be too naive of me to ask if there actually is a quiz/ questionnaire tailor made for us, asking us various questions, and by receiving a unanimous "yes" to any single question, would bring us just 1 step closer to finding out how we all ended up with the CH's?

Thanks guys..
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« Last Edit: Apr 17th, 2009 at 1:19pm by SingleBreath »  
 
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #11 - Apr 17th, 2009 at 1:37pm
 
With the meds, i wouldnt stop anything until the doc says to and just how to do it, there is a lot of dangerous things that you just cant stop cold turkey. If you were diagnosed, then they may go away for a moment, but like it or not they WILL come back, from what i know no true CH sufferer has ever been cured.
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #12 - Apr 17th, 2009 at 7:58pm
 
In response to your question there have been hundreds of attempts at surveys trying to find a common denominator and to date none has been found. Some had early age head trauma, otheres did not, that's an elusive answer we haven't stumbled on yet! Wink

Joe
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #13 - Apr 17th, 2009 at 8:59pm
 
Thanks for your responses and the good news 1 pain free day & Joe  Cry

Question 1 is still up for grabs.. Anyone with a new sledge hammer wanna go??  Wink
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #14 - Apr 17th, 2009 at 9:22pm
 
Hello Single,
   
     My name is Bill and i live in Cleveland Ohio. I am 41 y/o and got my 1st round when i was in the early 20's. There are other things you can try to help till you get set up on your 02. Im 1 of the people who oxygen does work for and i can bust a attack in less than 5 minutes most times. Try keep some red bull handy, doesnt sound right in the middle of the night but it may help, it has for many. Also when you get woke up tonight as soon as you feel it coming try doing 25 push-ups, then wait 2 minutes and try 30 push-ups, then do 30 every 2 minutes for up to 10 minutes if that is possible. This has saved me a few battles. I hope some of these things help.

            Coach Bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #15 - Apr 23rd, 2009 at 6:50am
 
Well.. I think I would much rather go for the Redbull than the 100 push ups.. But thanks for the offer Coach.. Smiley

My respect goes out for you for being able to make push ups while in agony..

I have completed my O2 set up, at home and in the car.

I've also gone and let my head be cut up with a blade (via a licensed doctor), then applied cupping..

Hopefully it will help..
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #16 - Apr 23rd, 2009 at 7:49am
 
SingleBreath wrote on Apr 23rd, 2009 at 6:50am:
I've also gone and let my head be cut up with a blade (via a licensed doctor), then applied cupping..

Hopefully it will help..


I'm glad you've got your 02 set up and hopefully this will now offer you the relief that it has for many on this site.You couldn't explain the above statement and how you hope to get relief from this method or is it a joke that's gone completely over my head.... Undecided

Lefty...!
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #17 - Apr 23rd, 2009 at 9:22am
 
Ashraf - In regards to question #1, yes, many of the meds we take have drowsiness or dizziness listed as a side-effect. Here's what's listed on WebMD as side-effects for the drugs you listed:

Sumatriptan (Imitrex)
Irritation/numbness/tingling of the nose/throat or a bad taste in the mouth may occur with the nasal spray form of this drug. Flushing, sensations of tingling/numbness/prickling/heat, weakness, drowsiness, or dizziness may also occur.

Indocid
Indocid isn't listed on WebMD, but if it's another name for Indomethacin, its side-effects are listed as: upset stomach, heartburn, headache, tiredness, drowsiness, or dizziness may occur.

Isoptin (Verapamil)
Dizziness, slow heartbeat, constipation, nausea, headache, and tiredness may occur.
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #18 - Apr 24th, 2009 at 12:14pm
 
Hi Lefty..

As weird as it may sound but no, it wasn't a joke that you didn't get. The act of hijama is an old Muslim form of medication that I had never tried before. It involves a practioner making around 25 small and quick incisions with a blade in various points of the body (3 in the back of my head & 1 in my upper back). The incisions are then cupped twice for around 10 minute intervals, sucking out lumps of clogged blood.

I'll put up some pics if I can figure out how to upload them from this iPhone. A few hours later, I still felt drawzy, but strangely enough, I felt that my hands were much stronger.

I got 2 attacks the same night I did the Hijama, which was just yesterday, as opposed to my usual threesomes, but I'm hoping for better results soon.

I was the practioner's first CH patient.


Dear Brew,

Thank you very much for your detailed side effects report. It is good to know that I wasn't turning into a woss, and that most of my diziness and stomache upset was due to the medications, which I think I'll be stopping now, after discovering the all precious O2.

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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #19 - Apr 24th, 2009 at 5:36pm
 
Hi Ashraf,

had a look at hijama on you tube and it looks quite painful. One very interesting point was that it must be performed in the second half of the lunar month. It looks like it would definitely have positive results for stroke and heart conditions but CH's I don't know...But if you feel it may have positive results then who am I to argue. It's Good to here the 02 is working well for you..

Lefty...!
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #20 - Apr 25th, 2009 at 11:46am
 
Hey Lefty..

It hasn't yielded the desired results as yet, as I'm officially back to my daily threesomes as of today. I'll keep trying different points on my head. I know there's a cure out there. Just need to look in the right (or left) places. I'll investigate Hijama points on the left side of my head, where the majority of the pain seems to congrogate.  

The incisions are not so bad and nothing compared to CHs.

If it works, even slightly, I'll put up a post on the medication page.

C ya..
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« Last Edit: Apr 25th, 2009 at 3:45pm by SingleBreath »  
 
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #21 - Apr 25th, 2009 at 11:58am
 
SingleBreath wrote on Apr 25th, 2009 at 11:46am:
I know there's a cure out there. Just need to look in the right (or left) places.

Keep us posted on that.

Quote:
If it works, even slightly, I'll put up a post on the medication page.

Let Dr. Goadsby know, too. He'll be interested.

When something "works, even slightly," we call that a treatment. Not a cure. Please be careful with that word.
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #22 - Apr 25th, 2009 at 4:03pm
 
Hi Brew..

It'll have to pass the treatment test first, before I can start getting my hopes up and believing it could remotely resemble a permanant cure, but thanks for the pointer. 

I'm keeping a detailed log of all the facts.

I'll let the Doc. know, if it slightly achieves any relief as well. Only then might it be something for him to look at. Unfortunately for my skull, I feel it might still be a few hundred incisions away, if at all.

On the other hand, it might also be a good idea to get him onboard from now and work through it together, one step at a time.

What do you think?
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #23 - Apr 25th, 2009 at 4:14pm
 
Contact him if you wish.

Best of luck.
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Re: How I turned myself into a CH exactly 3 weeks ago.
Reply #24 - Apr 25th, 2009 at 4:28pm
 
Hey Brew..

Any idea how to do that, as I couldn't find him in the members list.

Thanks in advance..
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