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First Timers! (Read 14464 times)
Bob Johnson
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First Timers!
Oct 19th, 2011 at 7:32pm
 
IMPORTANT!
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile

BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
=========
Pain meds as the sole treatment for Cluster is, by definition, inappropriate treatments. Don't assume that you can't afford a headache specialist until you check with your health service and explore these suggestions:

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register 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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Most docs simply lack training and experience with complex headache disorders and you will save a heap of pain if you can find some skill/talent.

But try and get a good diagosis before yielding to the temptation to start this and that treatment.
===
Some basic learning is needed:




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--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]
--
See:
A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Search under "cluster headache"
==
Explore the buttons, left, starting with the OUCH site.
===
Print out the PDF file below. You can use it lead discussions with any doc you see re. treatments--and to educate yourself.
====
For help with $ for meds:

Cluster Headache Help and Support › Medications,  Treatments,  Therapies › MEDICATION $ ASSISTANCE: 12 sources=UPDATE




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« Last Edit: Sep 18th, 2014 at 12:53pm by Bob Johnson »  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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bejeeber
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Re: Hi All!
Reply #1 - Oct 19th, 2011 at 8:05pm
 
You're not crazy Indiana, dancing with this beast can just make you feel that way.  Sad

As much of a disaster the no insurance thing can be, after 30+ years with CH I'm ceasing to see that as being as big of a deal as I used to because as it turns out there are non toxic preventatives that insurance wouldn't pay for that can be MORE effective than what would likely be prescribed.

And heck my insurance didn't cover O2 anyway.

So here are 3 things I think could surprise you regarding how possible it s to get control over this without spending big $$$.

1) Welding O2 (administered as outlined in the oxygen info link to the left). Lots of CH'ers go this route. It's the same as "medical" O2" but no prescription required and likely cheaper.

2) The relatively new D3 regimen for prevention. Here's an info link: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

3) Clusterbusters. So many chronic CH'ers even have gone into full remission with this approach. A recent trend is to order Rivea Corymbosa seeds online (they're cheap). Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

[One more thing - if you do end up with imitrex injections, this tip outlines how to get 3x as many aborts for your money: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register



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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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markk38
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Re: Hi All!
Reply #2 - Feb 4th, 2012 at 12:00am
 
I'm not sure if this is the right place to post this or not, but I just read the tip on extanding imitrex injections.  It occured to me that another way would be to modify two injectors by just cutting of a portion of the stem that presses the plunger in the vial.  Find the depth of plung (looks to be about 3/4 inch) and cut off enough of the first injector to just dispense 2 mg, the next would dispens 4 (or two from one that already had two plunged out) then of course the full 6 to get the last two.  Every time I get a script they give me another injector, so I have bunches of them sitting around.  Anyway - that could be an option for those that are a little scared of needles.

The other thing the post did not mention, was cleaning the needle between uses.  That should probably be done.
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HungryHippo
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Re: Hi All!
Reply #3 - Oct 4th, 2013 at 1:09am
 
Just as a random, Australian physicians aren't on any of those lists. Using Professor J. D. Watson at The SAN Medical Centre in Turramurra, NSW (near Sydney) is widely advised if you have a severe headache condition (cluster headache, trigeminal neuralgia, vestibular migraine etc). He's considered one of the pre-eminent neurologists down under, with a particular regard for head-related stuff.
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bogey
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Re: First Timers!
Reply #4 - Feb 2nd, 2015 at 2:20pm
 
Hi, new to this site but not cluster headaches.
I am just starting my 7th year with this hell. Normally my season starts around april/may and lasts until june/july. My symptoms are a slight feeling of a dull ache, always in the same area of my right jaw or cheek. If I am at home either in bed or up and around my first action is to get a hot moist towel and cover my right side of my face. Usually by now the pain has increased to behind my right eye.  I can some times control the pain this way. If I am away from home when the same dull ache starts, I hope to God I have a sumatriptan injector with me. This will almost always relieve the pain in 5 to 10 min. I went the first 2 years of this hell not knowing what this was. I finally researched and went to a neurologist for help. Not much help, but she did recommend the sumstriptan. I also use oxygen which also helps. Yes I am a pacer, sometimes a crier and definitely a moaner.
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hell and back
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Re: First Timers!
Reply #5 - Jul 18th, 2015 at 7:29am
 
Hi people. I am 34 years old from Manchester England. I have suffered with CH for six years and I'm chronic. I am completely lost and don't know where to turn. I have had so much meds put in my body to no avail. I have anything from 6-10 attacks a day and I'm never out of pain. I have had, sub cut sumatriptan, oxygen, verapamil, topramite, lithium, dyhydroglotomine, gabapentin, morphine iv, oramorph, extensive opcipital and nerve blocks an some I can't remember as my brain is a mess.
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AussieBrian
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Re: First Timers!
Reply #6 - Jul 18th, 2015 at 7:40am
 
Welcome Hell and Back, and we reckon all headaches are horrible.

On the top left of your screen is a button for the Cluster Quiz. Have a look at it and let us know how you get on.

You might also consider posting on the Gettin' to Know Ya board where you'll likely meet other friends.

We care.
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« Last Edit: Jul 18th, 2015 at 7:44am by AussieBrian »  

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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hell and back
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Re: First Timers!
Reply #7 - Jul 18th, 2015 at 8:49am
 
Thank you for your reply so much. I've been on indomethasin and that also didn't work. I find if I split my injections and take 3 ml and 10 mins later the other 3 ml it can sometimes abort. I just feel the hospitals just don't know what to do. My worse time seems to be around 3am every night. I'm scared to sleep to be woken in pain
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hell and back
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Re: First Timers!
Reply #8 - Jul 18th, 2015 at 10:18am
 
Thank you so much. I shall try those an post back with any news.
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ransubs
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Re: First Timers!
Reply #9 - Feb 7th, 2016 at 2:41pm
 
hi my name is ransubs and have had clusters for over 25 yrs.
my clusters come and go sometimes they go for 2 yrs. and now they are back after not having any last yr. now this time it's a little differ. as they are coming in the morning where as before they only came at night . they have woke me up from a nape 2 times and woke me in the a.m. after being asleep for the night. also they have been slightly less intense , they have not come on full blown thank god .but im afraid they will. so I would like to get some info. on a treatment I have not tried so far , that's mushrooms. if anyone could please help me with this I would truly love that .
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Peter510
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Re: First Timers!
Reply #10 - Feb 7th, 2016 at 4:00pm
 
Hey ransubs,

You're very welcome.  Have you tried the Vitamin D3 regimen?

It's doing wonders for lots of us.

Peter.
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You don't stop laughing because you grow old....You grow old because you stop laughing.
 
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Hoppy
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Re: First Timers!
Reply #11 - Feb 7th, 2016 at 5:25pm
 
Hi ransubs and welcome,
Best check out our sister site for info on shrooms, the link is to your left on this page ClusterBusters.

Hoppy
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Mike S.
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Re: First Timers!
Reply #12 - Feb 27th, 2016 at 1:51pm
 
New to site, Just starting to experience the nightmares. Thank God that a ER Doctor listened and nailed it on the head. I Honestly dont know how all of you could deal with this for years on end. It's only been a few months for me and a few misdiagnoses for me from Dental issues, TMJ, Migraines.
Yesterday evening was the worse attack as of yet, Brought me to my knees in tears, and first ambulance ride in my 49 years of life.
Learning very quickly how the insurance companies will pay for any narcotic to “Knock me out” but will only give 1 to 4 ½ day supply in a month, of the meds my neurologists is prescribing. What a Joke.
My “episodes” range from 1 a night to 8 day / night. Like I said, I don’t know how all may be able to deal with IT.
Mike S.
New Market, MD
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Peter510
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Re: First Timers!
Reply #13 - Feb 27th, 2016 at 3:01pm
 
Hi Mike,

Welcome. We're glad you found us, but sorry you have to be here.

Lots of good advice and support here, so use it to the full. Read lots and ask loads of questions,

I would suggest that in particular you read the thread "123 days pain free....." In the Medications and Treatment section. It give great detail about the Vitamin D3 Regimen that has helped 80% of us to cope. ( now you know how we do it).

There's a lot of reading there but well worth it.

I don't see any mention of Oxygen in your post ???????

Best wishes,

Peter.
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You don't stop laughing because you grow old....You grow old because you stop laughing.
 
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Hoppy
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Re: First Timers!
Reply #14 - Feb 27th, 2016 at 5:58pm
 
Hi Mike and welcome, sorry you had to find us.

They say things come in threes, and your the third one the  Smiley has paid a visit too! "At your age", in the past couple of weeks. So, read, read, read, lots of information here to help ward off the  Smiley and ask  Questioning Questioning Questioning.

Hoppy
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Mike NZ
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Oxygen rocks! D3 too!


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Re: First Timers!
Reply #15 - Feb 27th, 2016 at 9:13pm
 
Hi and welcome Mike

Its good to see that you got a diagnosis and that you're working with neurologists who will have confirmed the CH diagnosis (it's not a straightforward one to make since it needs to ensure that the symptoms are not caused by anything else and there are lots of things with very similar symptoms).

What medications have you been given for your CH?

I'd expect you to be on a preventive, e.g. verapamil, lithium, topamax, etc., which will cut down how many CHs you get plus abortives (oxygen, imitrex, etc.) to kill off rapidly any CHs you do get.
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Michael63
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Re: First Timers!
Reply #16 - Mar 25th, 2016 at 7:14pm
 
As a First Timer myself, I have a question. When I first came here 3 weeks ago, I read something that listed all the abbreviations and short forms that are used on the site.  For the life of me I cannot seem to relocate it.  Anyone know where it is located?
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Peter510
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Re: First Timers!
Reply #17 - Mar 25th, 2016 at 7:41pm
 
Michael,

Is it in the new visitors tab on he top left of the page....Acronyms and cluster words etc  ???????

Peter.
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Re: First Timers!
Reply #18 - Apr 16th, 2016 at 11:36pm
 
My name is Matt, I live in San Diego, CA. I suffered with CH's for 10 years.  I've not had a CH for many years.  My intention is to help others dealing with this problem and give them any advice that can help them through the pain and difficulties associated with CH's.
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To find out how I got rid of cluster headaches check out my video: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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Hoppy
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Re: First Timers!
Reply #19 - Apr 17th, 2016 at 12:43am
 
Hi Matt,
Hoping you don't jinx yourself! CH's are known to go into remission for years in some folk, and then out of the blue he rears his ugly head. One of his favourite times to pay you a visit is after a 7yr remission. So, never let your guard down.

Hoppy
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AussieBrian
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Re: First Timers!
Reply #20 - Apr 17th, 2016 at 4:28am
 
G'day drmatt, welcome, and as a medical man yourself I'm sure you're the first to agree that a true diagnosis is a most important first step.

Have you seen our little Cluster Quiz on the top left of your screen? It's far from perfect but it helps many on their quest for an answer.



We also help by pointing people toward qualified and experienced headache specialists in nearby districts because mis-diagnosis of headache problems is terribly common and can lead to dreadful outcomes for all the wrong reasons.

We're all here to help, so welcome aboard,
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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Re: First Timers!
Reply #21 - Jul 24th, 2016 at 8:57pm
 
Good evening. My name is Mourad (friends call me Momo) 27 y.o. in about a month. And im new to this site. I am from Montreal. This is my second cycle of my life. I had my first Cluster headache 5 years ago around the same time as this year and thats when i was diagnosed. i am been also an alcoholic for about 4 years now drinking every night up to 8 beers while gaming. I stopped drinking about 10 days now (not a drop) i am going through withrawal right now, its hard, but my headaches are alot less frequent.

this year they started around the 4th of july ( I dont really remembre the exact date) the first one woke me up during the night 2/3 am the second one aswell, 3,4,5th time i was drinking session but around 10pm. Thats when i stopped drinking and that when they started to become less frequent but never on same time of the day. Some where strong ( with right eye closing and tearing right nostral blocked) and some were like 6/7ish in pain but not acompanied buy the eye and nostrel syndroms.

My last HA was 3 days ago (pain but no nostrel block or eye tearing)

I have a question. When ever i am not having a HA i have this weird/unconfortable sensation in the spots where the pain usually accors and its not pain. Is this normal?

Can anybody help?
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Re: First Timers!
Reply #22 - Jul 27th, 2016 at 6:22pm
 
Having sensations in the places where CH pain occurred, I call shadows.  Like a reminder that the potential HA is there rolling around and could develop any moment.  Remember when you had no HA's there were no sensations.    I have been having CH's for 40 years.   This was the longest break, 5 years, I have had, but they're back now for a week.  Shadows and sensations virtually all day and night, if I am not actually getting hit.

The actions of these CH's will morph into all kinds of new things.  It seems like they always have a new twist.  This week, it's moving, right to left, left to right, who knows what will be next week or next year. No one knows.  Trust your instincts and do what helps you.   Some of the stuff on this site I could never do, like energy drink or caffeine, that would send me off to the ER.   For me, heat pack, not ice, etc.  imitrex is great, but what a next day rebound, ?   Take care, trust yourself. 

Kip
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Re: First Timers!
Reply #23 - Aug 9th, 2016 at 3:10pm
 
Hi Everyone, I'm living in London UK and have had cluster headaches for 9 years now. I also tell really long stories so here goes.

Got my first one when I was 20 during a, ahem... romantic encounter with my then girlfriend. Scared the crap out of both of us, and felt embarrassed and confused as hell when it passed. I kinda dismissed it at first, since I've always gotten headaches I just chalked it up to a particularly bad one. I didn't want to make a big deal out of it all. But then it started hitting me every day, around 6am, then again in the afternoon (and any time i started to get intimate with said girlfriend). I ended up in hospital when I got hit in the street and passers by called an ambulance. I'm certain many of you will be familiar with the doctors dismissing you, making you feel like you're being 'dramatic', or telling you it was 'just a bad headache'. I ended up in the same hospital two days later for the same reason, and got similar treatment.

Just as I started slipping out of the fear and into depression the cycle ended and I carried on with life until the same time the following year during undergrad exam period. I was sent to the university doctors and they finally diagnosed it and promised me they could help. I remember crying in his office because I was so scared that it was happening again, and relieved someone was finally hearing me out and going to help me. I still got cycles every year, though propanolol during the cycles helps, sumatryptan aborts if i catch it early enough, when i can feel the 'shadows', but doesn't abort an attack that's already started for me, indomethacin and O2 have been effective abortives in the past though. Still, the fact that it can just come out of nowhere, like someone just blind-sided you with a hot pickaxe, and that you can feel completely fine and it just hits you, again and again, 2 or three times in a day for weeks... I'm preaching to the choir again I know.

I'd been pain free for the last 3 years and had almost forgotten how bad they really were, until i woke up with a full blown attack about 5am this morning. I don't have any meds anymore, so i just had to ride it out. Lasted longer than any I've ever have before; just over 2 hours, in the past they've only lasted 30-40mins. I paced, clutching my head, then trying to cool it down, going outside, going inside, trying to lie down, trying to sit up, I cried, I roared, trying to relax and massage my neck, trying to find the neck position that would let the pain 'flow' out and relieve the pressure. Most of all reminding myself it will pass. I know many of you guys here will completely understand the thinking behind ancient practices of trepanning to 'let the demons out of the skull'.

I guess I'm here because although I have a loving partner (away right now), and great friends, I just can't quite explain to them the pain or the terror I now feel knowing that this is never a one-off. I have shadows (interesting that I have the same name for them as I've seen posted here) as I type this, and the screen seems bright, and I never know how much of it is real or psychosomatic paranoia. I got tryptans from my doc this afternoon, but they're not always effective, and the fear is still there. I always feel like I'm making a big deal out of it, a big drama; that I'm just terrible at coping with them. I guess this is why I try to completely forget they exist in between cycles, pretend they don;t exist as if that will help. Honestly, I think the truth is I'm just terrified. I hate them.

Thanks for reading, apologies for the long tale.

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Re: First Timers!
Reply #24 - Aug 10th, 2016 at 5:53am
 
G'day Drei, welcome home, and no need for apologies. We know only too well that all headaches are horrible and we're happy to help in any way we can.

Take a really good look around our happy little site because there's much might be of interest to you, from the Cluster Quiz button up on the left to our many suggestions about preventives and abortives that work (and some that don't).

Ask all the questions you wish because many of us here really do want to help.

Things can only get better,

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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