It takes doc's out of their comfort zones. Oxygen should absolutely be your first line abortive. Read the link Potter gave you. Medical oxygen does require a prescription. Welding oxygen does not. read the link, ask any questions you still have!

Joe

sampsonite wrote on Sep 21^st, 2011 at 2:49pm:


Do more than just consider it, do it.

I'll echo Guiseppi's comments and add my own in that oxygen is a life changer. There is no other way to put it.

Welcome to the board, and it's okay, most everyone here is a little crazy to some degree or another!  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

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


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.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

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.

clusterbusters.com


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

Well, I may be new here, but not new to Clusters.  I am 48 and have had clusters since i was about 12 or 13. Diagnosed in 2002.  In a cycle now.  As i get older the cycles grow longer.  just went to a Neuro, the 16th and am going to try the verampimil.  I was pleasantly surpirsed to see a topic on the drug.  Before i go this route though I am going to try the magnesium, B2 treatment.  Last cycle i was in I had learned about the mag treatment and gave it a try.  Clusters stopped; the question, did the magnesium work or did the cycle just run its course. 

Had a great grandfather commit suicide from cluster as did an uncle.  My brother has them as well.  Thank God for meds or perhaps, we may have followed the family course. Though, I hope that would never be the case.

2 boys that are 8 and 12.  I pray they do not go cluster. That perhaps, would be worse than me actually having them.  I feel for you folks who are chronic.

Hello everyone, I'm new to the site, but not new to Cluster Headaches, now not sure if this is weird but I have named my Headaches Marla Singer from The movie Fight Club. I love that move. I'm 30 years old, male and have been dealing with periodic visits for Marla since Feb 09.  Just got woken up at 4:00am for my 5th Marla visit in 24 hrs. Seem to hit me 2 to 3 hours into sleep. She woke me and I put the O2 on and slammed a Redbull. Seems to have pushed her back for now. But I know Right when I go back to sleep give it 2 hrs and she'll be back.  She came for a real bad visit at 7:00pm yesterday that lasted 1hr 18mins. A real kicker. Was good all day yesterday Had 3 visits in the morning yesterday as I did not sleep the night before for fear of her damn arrival. but yeah went to sleep at 6:00 am by 8am woke and put on O2 10mins she was gone. Fell back asleep a little after 10am she was back O2 on 20 minutes later she was gone. Fell back asleep 12pm she woke me up again put O2 on 1hr later she was gone and I was up for the day.  So now I'm sitting here it's gone 4:30 and I am debating going back to sleep or just staying up. This round of visits started back in December and have become more and more frequent.

Welcome to the board Human. I find that drinking a Red Bull, while aborting with oxygen, seems to push the come back attack a lot farther away. Not real good at night as it makes it impossible for me to fall asleep! Might be worth a try for the daytime hits, Red Bull is a popular energy drink here in the states but any energy drink that combines caffiene with roughly 1000 mg taurine should do the trick.

As I mentioned to Dylan above, go to the meds section and read the topic "123 pain free days and I think I know why." A daily supplement routine that's giving many some pain free time. It's cheap, healthy even if you're not a CH'er, certainly worth a try. Glad you found us, hope we can help you.

Joe

Welcome to the board CC. We have a soft spot in our hearts for our supporters. You make our worlds continue to go round. My wife has stuck with me thru almost 30 years of marriage with the beasty tagging along. Not sure my sanity would have been intact without her. Personal trainers...now's our chance to get this board in shape!

Joe

Hello all, I'm new go the CH forum.  I actually got here by new doctor's recommendation (she really stressed that I go here).
So here goes the history.  Oh, my doctors change out so much because I'm in the military therefore I do not get much continuity (I will now with this new doc though).
I'm 38 and have had on and off headaches since childhood.  But, the state they are in now didn't happen until 2004.
99% of the headaches occur on the right side of my head.  I start feeling a pain/pressure at the top of my neck/base of my skull and it quickly moves up into my head and soon covers essentially the entire side of my head and w/in 5 minutes I'm on the floor.  When the pain peaks it feels like someone is putting an ice pick through my head just behind my temple (not to mention the excruciating pain throughout the rest of the side of my head).  My eye feels like it is being pulled back into its socket and it gets really read and irritated (I do not get any runny nose or watery eye though).  Typically the headaches last 30 minutes to an hour and then I'm extremely tired afterwards.  At their worst, I get 10+ per day (woken up at night and throughout the day).  Also get real nauseous when headaches get 8+ pain level.
Reading the posts, it sounds like I fit in.
I've now seen several general practitioners and 5 neurologists (four of which didn't specialize in headaches this is since 2004) and finally have gotten to one that specializes only in headaches (and actually takes the time to listen as well).  First one, no diagnosis, but treated me with nortriptyline which worked for a while but we had to keep upping the dose until that was no good then went botox with it.  Seemed OK for about 8 months.  Started coming back and then the doctors changed out.  Oh, in 2004 during one trip to ER was given shot of immitrex and that didn't work, headache got worse and made me deathly sick to stomach.
Second doc, gave diagnosis of hemicrania continua and put me on indomethacin which worked for a while until we had to up the dose enough that I couldn't take the GI tract issues so added in Verapamil.  Worked Ok but the indicin still causing the GI issues.  Ended up switching to Lamotrigine and Verapamil.
One thing I also was not clear on.  Each time we upped the meds, the headaches did not come back real bad.  What happens is they start coming back, I think the term is as shadows and I can tell as the shadows get worse it is time to get the meds upped or adjusted.  So each time I discuss a med adjustment it has to do with shadows.  If the headaches are real bad, I'll say so.
So in November 2011 the wheels came off the bus as the shadows didn't come back, the devil did (hope I said that correctly).  My military neurologist retired and there was no military one to replace and with no warning the headaches were back and I was on the floor all night and during the day (10+ again).  After a lot of trouble with the military medical system, I got in to see another neurologist (who was >60 miles away) who did not give me an official diagnosis but said the headaches sounded like clusters to him and put me back on the indicin (left me on verapamil and lamotrigine) until the replacement for the other doc could arrive.  The replacement doc arrived, I got in to see him (actually only a couple of days passed so no change in headaches).  This 4th doc now officially diagnosed me with rebound headaches.  Took me off the indicin, put me on prednisone, topiramate, left me on verapamil started weaning me off lamotrigine.  Gave me zomig (pill form) as an emergency med (used it a couple of times, worked once and not the other).  Also told me that he wanted me to go on a plant based vegetarian diet (vegan).  Not going to do that!
Changed up the meds per his direction.  Headaches changed some.  During the day they did calm down some, still getting them but no where near as many.  Night still just as bad.  I didn't mention before that like clock work 12:30 a.m. and 3 a.m. were the worst times for me and sometimes 4 ish as well.  Then my general practitioner (good guy) told me to start taking the indicin again (since the new neurologist was a quack) and within days the night time headaches started to calm down (25mg) and a week later when I upped it to 50 mg they haven't woken me up since.  I am still getting shadows all through out the day, but I sleep and am very functional.
Now the better news for me.  I got in to the Swedish Pain and Health Clinic in Seattle and am seeing a neurologist that specializes only in headaches.  She diagnosed me with clusters (stating that I did show some signs of the hemicrania continua).  Just saw her on Friday so haven't had time for any changes yet.
She is upping my verapamil from 240 to 480.  Giving me nasal zomig vice the pill form (for emergencies).  Getting me oxygen as well (and I have read the posts and will make sure it is done correctly, thanks for that info).  Keeping me on the Topiramate (50 x 2/day (100 total)). And hopefully with that I can start weaning off the indicin (for the sake of my GI tract).
I tried to give a pretty good history.  I'm sure I left out some important info.  Any good pointers or info would be appreciated.  If more info is needed, ask.  Thanks.

Uber excited!  I'm super new and loving everything I've read so far. It's going to take me months to read through this site, love it!  I go to my Neuro doc on Wednesday to talk about getting this demon under control.  I've had a chronic headache for a year, lots of tears, pain and straight up thought I was going to lose my mind.  I wish you all health and blessings, I'm so sorry that anyone has to go through this, but I feel so much better knowing I'm not totally alone.

Hello All,
About me:
Age 25, Male, interest in health and fitness,
I self diagnosed myself with cluster headaches about 3 years ago, after hours of research online trying to figure out what these headaches I kept getting where all about. I had all types of theories until I found a link about cluster headaches and everything made sense after that. I have been getting them since fall 2005, age 18, from what I can remember. This was at least when they became more frequent.
My headaches are episodic for now. They began on the winter/summer solstice and fall/spring equinox. I experience phantom symptoms a few days before and I know there coming soon.
Sleeping is a main trigger. During the peak season I can expect 3-5 per day, lasting 30-60min. Towards the end of the head ache season they become less frequent and shorter. I am thankful for this after reading some of the other user’s experiences. For now my case does not sound as intense as some.
I do not take anything for them right now; nothing has ever worked for me. Music, darkroom, rocking back and forth, deep breathing and dancing (awkwardly moving round room) help relieve the pain and shorten the duration.
I am here to share my experience and to learn from the older members who have much more experience than I do. Thanks.
No one really understands my headaches when I try to explain them, so I stopped. Here I hope to relate with others. 

Hey everyone!  I'm a 33 year old married guy with a 2 1/2 yr old son.  I live in Rochester, NY and am the  finance manager for Durst Image Technology.  I was honestly at my wits end this past week with what I thought (and probably tried to convince myself) were allergy related migraines.  After reading through a fraction of this site, I now know I was wrong.  To finally at least have a good idea of what might be going on with me almost brought me to tears, as well as finding out there are quite a few people dealing with the same thing.  I started getting headaches in 2008 when I was working for GE and was in "Excel" hell.  I chalked it up to eye strain and stress and so began my life of self diagnosis.  For the past couple of years I would only get these headaches around the holidays, yet around the same time every night.  After the second consecutive year of it my doctor told me I was most likely allergic to Christmas trees and so we got a fake one last year.  While I did notice that I wasn't getting the headaches as much I still did get them a few times.  This was this past Christmas.  Fast forward to February or so, now I'm starting to get them a couple times a week.  After another month or so it's gone up to 4 to 5 times a week.  After I couldn't take it anymore I went to go see my doctor again.  Due to the warm winter and early spring here in Rochester, NY they again said it was probably allergies, however this time around she did mention cluster headaches.  I was prescribed a stronger dose of Imitrex and Bultalbital which really have no effect on my headaches.  Almost every time my headaches come on around 9pm or so and within a couple minutes are full blown to the point I have to shuffle (or crawl) to the bedroom where I bury my head in the pillow and roll around until the pain knocks me out an hour or two later.  I feel lucky only in that this doesn't happen to me during the day and I can live a mostly normal life.  I can't imagine if I had to deal with this at work or something like that.  After 3 days or so of the attacks in a row I would do anything to get them to stop and it is driving me mad.  I've just gotten here but I look forward to starting to read your posts and help me cope with this nightmare.  On a personal note, I'm a huge sports nut and a die hard Cleveland Indians fan.  I love to golf now that I'm on the wrong side of 30 and have given up the sports of my youth.  Music is the soundtrack to my life and I'm a huge fan of the Beastie Boys, Pink Floyd, Sublime, and pretty much any other genre other than country.  I'm extremely social and love having a good time when these headaches don't get in the way.  I look forward to getting to know everyone and thank you for having this site and this forum to learn from and share.

Hi Chris, some bad news, if it is CH, they keep getting worse. If it's NOT CH, it's something that needs to be looked at. It sounds a LOT like CH to me, which means the sooner you can get referred to a Headache Specialist Neuro, the sooner you can get on a decent treatment regimen. Check out the link in the post above for oxygen, should be your first line abort. No more rolling in the pillows and crying...been there done that ....instead you suck 02 for 6-8 minutes and the pain is gone. Glad you found us.

JOe