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Newbies. Help us...help you (Read 85254 times)
Heidi
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Re: Newbies. Help us...help you
Reply #25 - Jul 8th, 2011 at 5:26am
 
Hello everyone, my name is Heidi, i'm 38 and have suffered with CH for 7 years. when I first started to experience symptoms my GP diagnosed me with neuralgia and gave me diclofenic and cocodomol which did nothing to help me. with each period of pains my symptons just got worse and episodes have lasted longer. I have been in this cycle now for 7 months. In April I was seen by a neurologist who finally diagnosed me with CH and started me on a corse of steroid treatment, it worked for a while but when the dose was reduced it became less effective, I did not want to continue with high doses so now I just take sumatriptan at the start of an attack, although it doesn't stop the pain completely it does stop it reaching the point where i'm punching my head in desperation. This has been my longest and most excrutiating cycle and I'm really hoping its going to end soon! Now that I have found this web site I know that I am not alone and hope to be able to communicate with others who know how harrowing this is to live with.
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Guiseppi
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Re: Newbies. Help us...help you
Reply #26 - Jul 8th, 2011 at 11:43am
 
Hello Heidi and welcome to the board. Read the first post in this topic, it explains how to tel us what area of the world your from in your profile, helps us direct you to the location appropriate resources.

Great that your doc knew about steroids....but we call them a transitional treatment. They are ONLY for short term use as they rip you up lng term. ideally he should have started you on a prevent med when you started the steroid taper, so as you went off the steroids the prevent would have taken over, Verapamil, Lithium and Topomax being 3 front runner prevents.

Read this link on oxygen. It's become incredibly popular as the first abortive of choice for CH, it's fast, as quick as 6 minutes, cheap, effective, no side effects, no "drug hangover" there's just nothing to dislike about it.:

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Then we need to get you directed to a Headache Specialist Neurologist. Your current treatment does not reflect a doctor knowledgeable in CH. That spells a lot of pain for you. Welcome to the board, I'm so glad you found us.

Joe

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Re: Newbies. Help us...help you
Reply #27 - Jul 21st, 2011 at 7:55am
 
Hi My name is Amy, married mom of 3 kids, 42, very healthy and lead an active lifestyle, live in London, Ontario, Canada.  I have posted under the New Section and have received several terrific responses from Bob, Joe and others.  I'm trying to post so you see my location!  I would love any suggestions for Dr.'s in my area.  Toronto may be the best city for me and is only 2 hrs away.

Summary of my History:  I began my first CH in 1997 ( I was 28).  Terrible HA on left side of my face, radiating behind my eye, into my temble and upper jaw.  Woke me up from REM sleep in the dead of night consistently every night for about 2 weeks.  I thought I had a brain tumor and was sent for both a CT scan and subsequently and MRI.  Stopped cold one night but returned like clock work every 2 years in the fall until this June.  The demon struck me in July this year and lasted 23 days.

My Dr. has prescribed every narcotic in the book including percocets and Tylenol 3's.  He laughed at me when I asked for oxygen the first time.  I have landed in emerg with exhaustion and defeat over the last 3 cycles now.  Luckily, and emerg Dr. was more knowledgeable and hooked me up with o2 for this time around.  I have asked for and tried prednisone ( based on info from your site and a brief visit with a general neurologist after an emerg visit)....50 mg for 10 days but it does not seem to do anything for me.  I tried it again this June with no luck.

I also use Imitrex nasal spray which works wonderfully to abort in one min but only if I catch the HA early ( i clearly know the signs now...and it still most often wakes me from a dream) but Imitrex stops working about a week and a half into the cycle or after about 10 uses in a row daily.  I had great success with o2 this cycle as well to abort.  But found I was getting them every 2 hrs ....6 HA total over the course of the night for the last week.  Very little sleep. 

I am hoping to try Verapamil next time but need a Dr. who knows how to moniter/prescribe it. 

Thank you so much for your support.  This is such a wonderful site and I feel like I've found 1000 new friends. 

It also makes me very upset to learn that so many others suffer from this to a larger degree than myself.  I just ended a cluster and feel such relief that I wish I could share just a little bit to that to those who I read are suffering.

I would be interested in helping others in my area as well if I could find them.  It helps me to hear others experiences.  This is the best resource on this wacky disorder that I can find!

Amy
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redheadedclusterer
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Re: Newbies. Help us...help you
Reply #28 - Jul 21st, 2011 at 8:13am
 
Hi Zenica

I'm Amy, a new poster as well and just read your post.

First of all, my heart goes out to you for all that you have been through.  My clusters are relatively short (2-3 weeks) but it's enough to land me in emerg and know first hand what pain really is.  I also can relate to your comment about appearing "happy" until you can't anymore.  I just finished a 23 day cycle and because my HA attack me in my sleep (4-6 times/night), no one really sees me during one.  I have 3 kids and have to mother them during the day so I cannot afford to be in bed, crying over my condition.  Instead, i smile and try to explain to everyone the very large bags under my eyes.  Until, one night after a 4 hr HA that i did not catch in time (because i took a sleeping aid..ativan..and did not wake up in time to abort with o2), I spend a day in tears and could not speak to anyone.

I sometimes think they think this is a psychotic disorder!

Anyhow, I also wanted to thank you for your specific vitamin information.  I have heard a lot about magnesium for HA from a friend and will run out and buy my supplements today.  So glad you found something that works without side effects.

THis is a fabulous site for sharing information.  So glad you posted! 

Amy
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Re: Newbies. Help us...help you
Reply #29 - Jul 27th, 2011 at 12:29pm
 
Hi, I live in Cape Coral, FL. 58yr old man, and have had CHRONIC CH's now for nearly 6 years. Like everyone else here, I had a pretty good idea from my own research on what my problem was, but after seeing 3 different nuero's and prescribed so many narcotics ("cause none of them had a clue), I reached out to the Cleveland Clinic in Westin, FL. Though the Dr. there wasn't well versed in CH's, she was pretty sure that is what I have and was the first Dr. to even mention O2. I immediately relayed this info to my personal Dr. who fortunetly prescribed the O2 and OMG what a shock. RELIEF!! I get generally 2 attacks a day..2:30 in the afternoon and around 8:00 in the evening. About 2 times a week I will get one around 1:00 am which will wake me up. O2 to the rescue! I am off all meds., have a O2 tank at home and in my office. I do drink Red Bull if I need to be away from my O2 for any length of time , as it does seem to lower the severity of an attack. Live as my wife and I knew it has totally changed since the onset of this horrible condition, and by the sound of it, even though mine has been a chronic condition, some are quite worse than mine. I wish everyone the best of luck, and will continue to relay any new info I can help with. Thanks to all for this great site!
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Re: Newbies. Help us...help you
Reply #30 - Jul 27th, 2011 at 4:01pm
 
Welcome to the board Muggins! Yeah, 02 has evened up the playing field for many of us! Glad to hear it's done the same for you. Keep reading on the boards, there's much more available to you then just oxygen. Wink

Joe
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Re: Newbies. Help us...help you
Reply #31 - Jul 27th, 2011 at 11:54pm
 
Hello everyone,

35 year old male from Utah. My first cluster headache started December 21, 1997 and my second cluster occurred one year later to the day. My first episodes were 3-4 nights long and have grown in length with each consecutive episode. I am currently in the 9th week of my longest episode, and it seems that the depression usually amps up when the duration surpasses your previous record.

I was given verapamil by a general practitioner in 1998 and got the whole CT and MRI treatment that showed nothing abnormal. Around 2002, I went to a new doctor during an episode and was given samples of Imitrex and Amerge. Imitrex made me incredibly nauseous, so he prescribed the Amerge. My insurance would only approve 6 pills per month (a 6 day supply for CH), so I switched back to 100mg tablets of Imitrex so that I could cut them up to make them last longer. I started hoarding imitrex tablets after they went generic.

I was finally diagnosed with CH in 2005 by a Neurologist who also started me on Periactin (Cyproheptadine) as a preventantive. This increased my periods of remission from 9-12 months to 1.5-2 years. After the diagnosis, I did some research and asked my regular physician about using oxygen. After a quick google search, he wrote a prescription for O2 at 11 lpm through a mask. That night the oxygen supplier showed up with a regulator that only went to 8 lpm and a supply of cannulas. Because of this, oxygen wasn't working for me. I began researching more thoroughly and bought my own regulator that went to 15 lpm and a few non-rebreather masks on Amazon. I went from barely being able to function during episodes to a least being rested enough to make it to work every day.

I consider myself a seasoned veteran of cluster headaches at this point. I'm glad that I've found this community where a vast amount of knowledge has been gathered to help others, hopefully before they've suffered for years.
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Guiseppi
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Re: Newbies. Help us...help you
Reply #32 - Jul 28th, 2011 at 9:05am
 
Welcome to the board!

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Take a second and read this link, just to make sure you're getting maximum benefit from your oxygen.

Then check out our siter site, alternative methods to dealing with the beast.

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Finally, talk to your doc about trying this med. Cheap and faster acting then the oral imitrex is.

And after you recover from reading the price list you'll understand why I encourage folks to try this one (at abaout $3/dose and nearly as fast acting):
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------



Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.


Joe

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Re: Newbies. Help us...help you
Reply #33 - Jul 31st, 2011 at 1:09pm
 
hi all new guy here not to ch im 27 irish guy rite in te middle of a bout just now i got dignosed 1 year ago have had about four series of attacks but this one has being bad thats why im here
              i know that its ch i have but my family fecon i need a scan is that common with any one else
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Re: Newbies. Help us...help you
Reply #34 - Aug 2nd, 2011 at 10:00am
 
Hi, I just stumbled upon this site while looking for answers - glad I've already found some.

           A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor?

I started having pounding headaches around September 2010, and, as probably most of you have, went through a series of exams, including CT scans. Until then I never had any serious medical conditions, and had been living in Europe for several years (moved from Austin, TX). It wasn't until recently that i was diagnosed with cluster headaches; it took three doctors to find out what the problem was.

           B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.

I was prescribed painkillers: milder, codeine-based for lighter attacks, and Imigran (GSK) for the worst ones. The latter is quite expensive but works wonders, even though it was initially designed to alleviate migraine related pain.
I try to limit the intake of painkillers tho, not an easy task but sometimes when the pain isn't piercing, I wait for it to go away on its own.

           C. Have you used or explored any alternative treatments (and ditto)?

Massage helps, so does accupressure but mainly as stress relief.

           D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support?

The days when it's bad, I can't work - and my job requires me to be at full attention all the time (I'm running a busy translations office). Sometyimes I will take a pill and go lie down for an hour - I have recently hired an assisstant to help me round as I can't seem to be able to be as efficient as I used to. It really pisses me off when I have to ask my boyfriend to take me home mid-party/social gathering/whatever because of the pain. He's supportive but I'm starting to be afraid whether he really is prepared for living with a clusterhead  Sad

           E. Do you have a good, basic understanding of Cluster and its treatment or do you want sources of  information about these complex disorders.

Due to medical background, I was able to accumulate a lot of useful information on cluster headaches; recently, I translated a series of articles for GSK R&D - but it will be great to read personal stories as well!
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Re: Newbies. Help us...help you
Reply #35 - Aug 2nd, 2011 at 10:09am
 
Welcome to the board, you'll find the pain killers next to wrothless to treat CH, the fact the doc even prescribed them indicates they know next to nothing about CH.  Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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Re: Newbies. Help us...help you
Reply #36 - Aug 2nd, 2011 at 2:13pm
 
Hi I`m from canada and have been suffering with chronic cluster headaches for 13 years. With very little break in between getting them, the most is week so I`ve had a week of no pain for 13 years. I am now 25 years old. Ive had many mri scans done along with different meds tomany to name but doctors have said they werent sure what it was then said cluster. I know very little about cluster headaches but any info you guys may have would be great. I am truly sick of having these headaches everyday all day for basically 13 years. thanks for this site Smiley
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Re: Newbies. Help us...help you
Reply #37 - Aug 2nd, 2011 at 5:58pm
 
Read my posting just above yours......it lays out a beginning approach to treating cluster headaches. Then just start reading EVERYTHING on this board! Welcome home.

Joe
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Re: Newbies. Help us...help you
Reply #38 - Aug 10th, 2011 at 1:28am
 
Hello, all:

My name is Anne, and I live in Arkansas, USA.  I'm 48.  I've just had the second cluster-or what I think is a cluster-within the last six months. 

I've had migraines (diagnosed) since I was 19.  That's a different headache.  I need total quiet, dark and absolutely no movement.  I have an aura that looks like a disco ball behind my eyes, or those old-time home movies with the flashing white dots at the end of a reel.  The pain, when or if it comes, can last for hours.  Migraine medicine over the counter can touch it.

The cluster is different.  I wake up at silly o'clock just knowing something's going wrong, and within a minute or so, I'm right.  The pain drives me out of bed, lurching around like a drunk.  The pain is all on one side, like the Jolly Green Giant jumping on an icepick in my right eye.  Pain medicine like that for the migraines doesn't help, and I usually am not able to get it together enough to find it.  Then-in about 25 minutes or so-gone, abruptly.  I do feel exhausted afterwards, and sometimes tender on that side.

"Fortunately", they only seem to happen at night, else I'd be afraid to drive or go to work.  They also don't happen all the time-mostly during high humidity, of all things.  I also wonder if they are connected to hormones or menopause, like some migraines.

I've been dealing with it myself, but I think I should see a doctor about it.  I'm also relieved to find other women sufferers here, as it seems to be mostly in men.
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Re: Newbies. Help us...help you
Reply #39 - Aug 10th, 2011 at 8:59am
 
Yeah in the old days they called it primarily a mens disease, and all women were diagnosed with migrains! Fortunately we're getting the word out, as you'll see on this board, there are a LOT of women with CH.

That being said, get thee to a "Headache Specialist Neurologist." GP's get a couple of hours training in doctor school on ALL headache types. Garden variety neuro's don't get much more. A headache specialist neurologist is your best bet at an accurate diagnosis, and an effective treatment regimen. Please let us know how it goes. If it is CH, DO NOT lose this website, it'll be your new second home. Smiley

Joe
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Re: Newbies. Help us...help you
Reply #40 - Aug 13th, 2011 at 3:27pm
 
hi
my names angie im 37 years old i live in pontefract in england UK i started with clusters when i was 21 although i thought they were migraines at the time due to mis diagnosis so i have been on everything headache tablets beta blockers sinus sprays etc none of which touched the sides it was only with my persistence of going back to the docs that i was finally diagnosed with clusters first my gp suspected he then sent me to a specialist who did a series of tests and recommended treatments for me i then went back to my gp who prescribed me with verapamil predisone steroids imigran tablets and a list of god knows what else it was only when i was admitted to A&E screaming in agony because i had a cluster for 8 painful hours that i was finally given sumatriptan injection within 10 minutes my cluster just disappeared fantastic finally something that worked no more screaming my head off at 2 in the morning writhing round the floor pulling my hair out and asking god to forgive me for whatever terrible sins i must have commited so i have been on the injections for about 3 years now i have noticed a change in the pattern of clusters since i started on the injections instead of 1 or 2 in the early hours for up to 3 months at a time i now get 4 to 6 a day but they only last a couple of weeks i have just started to take melatonin on a night before bed i heard this helps no change so far but its still early days i am having a bout of clusters at the moment so feeling shitty at the mo tried to walk the dog today and had to race back for an injection  Cry had to ring in sick at work dont know when i will be well enough to go back if it wasnt for my husband i just wouldnt be able to cope he is amazing he really helps out cooking and looking after the kids i have had these clusters now for 16 years i dont think they will ever go the only time ive had any peace was when i was pregnant i was cluster free for the whole 9 months heaven  Grin i do worry about the amount of injections i take though but i cant see any alternative  Crythanks for listening and i think this site is amazing
angie x
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Re: Newbies. Help us...help you
Reply #41 - Aug 13th, 2011 at 3:39pm
 
Welcome to the board Angie, read this link for an alternative to imitrex. I can abort in about 6-8 minutes with oxygen, almost as fast as trex, much cheaper, no lingering side affects, worth a shot!

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Re: Newbies. Help us...help you
Reply #42 - Aug 15th, 2011 at 2:54am
 
Hi, I am Martin, 41 live in leeds UK and had CH since 13 years old. Finally got a diagnosis in 1991 after a lot of personal research. Episodes used to be every 12 months, however, as time has gone by this has pushed to every 24 months. Lucky me!
360mg Verapamil, oxy and the sumatriptan injections get me through these days, and to be honest its much easier than it was in the 80's and 90's. Bouts last about 8 weeks and generally come late Summer to Christmas. Its ruined a few of those btw. Got two kids, a very understanding Wife and the National health system , so truth is I count my self lucky.  Wink Wink Martin
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Re: Newbies. Help us...help you
Reply #43 - Aug 17th, 2011 at 4:23pm
 
hi, my names iain and i live in bedfordshire in england.

i'm 39 and although i've had these headaches for the last 8 years, i've only just been diagnosed as having clusters by the senior gp at the local clinic.

i'm now on verapamil, which have helped reduce the number of attacks, but they can still be as intense as ever, sometimes lasting days if not weeks.

this may sound strange, but even though i hate the pain, and fear it's return more than anything, sometimes between attacks, i miss the pain?? is this just me finally losing the plot or does anyone else feel this?  Cheesy


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Reply #44 - Aug 17th, 2011 at 4:45pm
 
Sorry, Iain. I never miss the pain.
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Re: Newbies. Help us...help you
Reply #45 - Aug 17th, 2011 at 7:50pm
 
iain.m. wrote on Aug 17th, 2011 at 4:23pm:
this may sound strange, but even though i hate the pain, and fear it's return more than anything, sometimes between attacks, i miss the pain?? is this just me finally losing the plot or does anyone else feel this?  Cheesy



...go back to your doc...he got it wrong...you don't have ch.....
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Re: Newbies. Help us...help you
Reply #46 - Aug 18th, 2011 at 9:37am
 
Hi iain - instead of relying on a GP for a diagnosis like this, I strongly suggest you see a neurologist with a big preference for one who specializes in headaches. There are many, many headache types and it's something that even normal neurologists get little training in. I'd certainly never rely on a GP for this.

Cluster headaches typically last between 15 minutes and 2 hours (with exceptions), so this does not fit with one lasting days or weeks.

However we are not medical doctors, so you need to see an expert to get the correct diagnosis.
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Re: Newbies. Help us...help you
Reply #47 - Aug 19th, 2011 at 8:10pm
 
Linda_Howell wrote on Jan 20th, 2011 at 2:59pm:
Our group has several thousand members scattered around the world and we look forward to offering you the support and help which has brought you to CH.COM.

While  we want to offer you the knowledge & experience which our common life with Cluster Headache has given us, let us share a few thoughts with you about how you can immediately help us to be the most effective in meeting your needs.

     1. Because the medical training, experience and skill level of physicians who treat complex headache disorder is so uneven in the U.S., much less in the rest of the world, we need to know where you live. Our diverse membership will be in a better position to identify local resources for you—physicians, specialty clinics, and so on—if we have this base line information.
     2. Then it would help us if you would give a grief history of your experience with disabling headache. A brief outlining of information such as these kinds of data would be most helpful:

           A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor?

           B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.

           C. Have you used or explored any alternative treatments (and ditto)?

           D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support?

           E. Do you have a good, basic understanding of Cluster and its treatment or do you want sources of  information about these complex disorders. (Because there are many dozens of kinds of headache, and treatment often erratic and lengthy, we would encourage you to start a headache diary.       3. On the main page is a series of buttons which you should explore. Also, read the many messages which are rolling over these pages. You will find yourself in the experience of others, learn from their experience, and appreciate that you are not alone—one of the great survival skills in coping with your headaches.

    Many times I have spent far too long in trying to get help to a newcomer because they didn't have their place of origin in their on-line profile.  Obviously we don't want your address but a city and state will be very helpful to us and ultimately to you.

Linda Howell, with help from Bob Johnson


I'm Gary and I live in Barboursville VA, about 30mn out from UVA hospital. I have yet to be officially diagnosed with CH. No one around here seems to have any idea what they are or how to treat them. Although I've been on some preventative meds before, I am now without any preventative or abortive medicines. I've been in debilitating pain for 10 days now. Unable to sleep, eat, or even cry. I've been to the ER 4 times and my regular doctor 3 times in the past 10 days. All the hospital will do is give me narcotics and send me on my way. Today my doctor officially threw their hands up at me. They actually blamed me for leaving the hospital after being there for over 7hrs and 4mg of dilaudid. They said I shouldn't have left if the pain was still there. The thing of it is, the pain had mostly went away after the narcotics but of course came back with a vengeance after the narcotics wore off. These headaches are ruining my life. I can't go outside because of the bright sun. I can't even take out the trash or mow the lawn. I'm permanently disabled due to extreme panic disorder so I don't have to worry about missing work. Which is about the only good thing going for me right now. For me, all this is new. I've had off and on headaches most of my life and just assumed they were typical migraines. I know now that I do indeed suffer from CH. I can't get any help for them though. I've called every doctor that I can get a number for and the soonest that I can be seen is nearly a month away. I can NOT last that long. Kip scale has been 10/10 for 10 straight days. I just can't continue on like this. I have to have some type of help. I'm lost in a world of debilitating pain and have no clue as to how to get out. I'm hoping I will find some answers here but right now I'm completely hopeless. I no longer know what to do or how to handle this. Because I'm bipolar, thinking of suicide as a solution has always been a problem for me. I don't want to die, I just want to be pain free. I'll do anything to get rid of this pain but I have run out of ideas on how to accomplish that. I have a friend who is trying to track down a supply of o2 for me but he doesn't have much faith (nor I) that anything will come from his search. I'm in so much pain that I've been throwing up all day and night for the past several days. The only medicine that seems to work on me is maxalt, which is not covered under my insurance and is like $350 per prescription. I can't afford that. I'd pay that if I had it but I just don't. I'm just a poor ole southern boy who's on permanent disability. I don't know if anything will come from this post. I mainly just wanted to vent. Thank you for reading.
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KevinC
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Re: Newbies. Help us...help you
Reply #48 - Aug 19th, 2011 at 8:24pm
 
Hello all. My name is Kevin Cummings from Leesburg Virginia. I am a virgin to the cluster headache club. But let me tell you I am Fuc$%@# tired of it already!!!! I have been suffering with them for a month now and im so sick of it. I found this website today and I am so glad I did. I have been to 6 DRs this month trying to figure it out and it is driving me nutz!!! They have me trying so many meds my liver is telling me i am an not a very nice person.. The one I am on noe is Topomax and Imitrex 100mg pill and it seems to be helping a LITTLE.. I have noticed that they are coming on like clockwork so i can pan for the ones in the evenings but the ones that wake me up are the killers!!!!! I want to thank you all for your posts and im glad I found some people I can relate to!!
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Re: Newbies. Help us...help you
Reply #49 - Aug 19th, 2011 at 11:17pm
 
Welcome to the board Kevin. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following, although many end up calling it "dopey-max" as a common side effect is it makes many kind of loopy!  Wink Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers. So while the pills might be helping a little, you'll find the injectables and even the nasal spray are FAR superior in speed and effectiveness. 

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

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Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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