Joe
yes I have been to a Nero and he does NOT do the O2 treatment. I am in the process now of finding one in my area that does it. He does have me on Imitrex 100mg pills and the Topomax. I am on my 3rd week of the topo so I am not up to the full dose yet. I am taking one in the am and 2 in the evening. To tell you the truth it really dosent seem to be helping at all. From what it sounds like o2 is the way to go so I hope to be on that this week. I HOPE.. Not sure if you have any experance with the topomax but I have a quick question for you. If you dont take it at the same time every day is that a problem? I usually take it at 7 everyday and today I slept till 8 and was woke to a CH. Any idea if that is from missing my meds by a hour? Thanks again for all of your help.. You guys are a life saver!!!!!!

This is just a thank you to all the home remedies, the ones that don’t need a doctor to get a prescription. For the last 3 years I haven’t been able to go to my headache doctor as the company I work for had to give up the health plan and other things to stay in business.

For two years of bouts I’ve was back to the old days of just trying to get through them and wait for them to end. I’ve had them for the last 36 years and it was 7 years ago I found a doctor who gave me the correct diagnosis and started some different treatments to try and find one that worked. Except for imitrex none of them were very effective and they didn’t even want to try verapamil as I have low BP. The one thing I found that gave some relief was when I accidently broke a toe while pacing to get rid of one, the pain from my toe somewhat mitigated the pain in my head. After that I’d try to concentrate on my toes and just create some pain from bending them up, I’m not telling anyone to do damage to their toes just some discomfort. I found your site doing a search on CH and I’ve been reading all the different things I could do on my own and I’ve found some relief with the D3 and fish oil. I just tried the Red Bull last night and that with sticking my head in the freezer I was down to just a half hour it was wonderful as they generally last for 5 – 6 hours.

So this is a THANK YOU for all the info on things I can do without a doctor.

thanks i know just where to get welding supplies and i didn't even think about the o2 from there.

You're on the right path with the oxygen, read this link if you haven't already, to see the BEST way to use it.

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

Hyperventilating with pure 02 has all but eliminated my use of imitrex, it's THAT good.

In the meds section of this board, read the topic, "123 pain free days and I think I know why." It's a simple over the counter vitamin and mineral supplement that's helping a lot of people on the board.

You haven't mentioned a prevent med in your arsenal. A med you take daily, while in cycle, to reduce the number and intensity of your hits. Verapamil, Lithium and Topomax are the most common prevents.

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

This link will show you how to get 3 aborts out of each imitrex stat dose. If you're not needle squeamish it'll really stretch out the stat doses.

Welcome to the board, knowledge is your best friend in the fight against CH.

Joe

The knot is very common, a lot of people have written about it. Welcome to the board. 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! When you see this doc, see how much he talks about the following, or if he doesn't know about it, is he open to learning? 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. The link has the medical info your doc will eed to write a prescriptiuon.

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.

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.

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


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

I live in Sun Prairie, WI Have tried all the prophylactics meds and abortives. The only legitimate aids that work for me are; nasal or injectable Imitrex, O2 10-15L/min, and ice.
My chronic friend has left me disabled and quite miserable a lot of the time.
The onset came when I was 20 I'm 58 now and am experiencing the worst batch of clusters yet.
motO2

Just to answer a few quick questions ...   (#1) You can't, (#2) Yes, (#3) and NO. 

JENNIFER H wrote on Sep 29^th, 2011 at 8:44pm:


Once you get used to oxygen killing off CHs rapidly, it'll reduce your fear of CHs. Or at least it made a huge difference to me as it was a life changing experience.

In starting this thread what Bob and I hoped for was to make newcomers aware to put their city and state in their profile so it can be seen on each and every one of your posts, thereby allowing anyone in your area to be of help to you in perhaps finding a good doctor, obtaining 02, etc.

I'm afraid just putting your location here on this thread won't be very helpful and will cause your location to get lost. 

Hi all, Allow me to introduce myself. My name is David and I am a Clusterhead. I live in Loomis, CA. They started when I was 17 years old. I turn 33 in November. And there back...!!! This cycle seems to be strictly nocturnal so far. Usually between 8-12 pm. My O2 doesn't seem to be nearly as effective anymore. The attacks are severe, even had an ER visit last week. Nothing seems to stop them anymore. No Medical Insurance means no treatment to find something new. Is this really gonna be what the rest of my life is like? Never knowing when the next cycle will strike. Never even saw this one coming. My cycles have always been in the spring. Now the fall. I hate this EFING S*#%. Don't know how much more I can take. So Exhausted!!!
Thank you for a site like this!

Im 43 years old male and live in Christchurch New Zealand. Been suffering CH for 14 years. diagnosed 2 years ago. My CH are seasonal lasting up to 2 hours. 3 to 4 times a day for around 6 to 8 weeks. Last year was prescribed imagrin this year on sumatriptan both of which i class as miracle drugs. Currently in my season but finding it very hard to get sumatriptan as i have to get a prescription for each 10 injections. Which dont last long. Down to my last one. Also been getting questions from my pharmacist on how much i am using. Also drive trucks for a living so im concern about the effects this will have.

Good Afternoon all,
I am new here, but not to headaches.
They started in my 20's, with the standard diagnosis of Migraine. When I tried to explain that they lasted 1-3 hours, not 24 or more, I was ignored. I took lithium and Elavil (?) for two years, along with Demerol when I was loosing my mind with pain. Every trip to the ER, I had to agree to see a Neurologist because when they looked into my eye on the left side, the back was bulged forward. I had already had an EEG that showed an 'abnormality', but no Dr. could explain what it was or why I had it. Then, after 5 years they vanished.
Ten years ago, I started with a killer headache that told me exactly how many eyelashes and eyebrows I had on my left side. Once again, "You have Migraines." NOT!!! Imitrex (?) did not work. After two weeks, they vanished.
Then, I moved to the mountains, 3000 ft up. Not a problem for a year. Then, it started. 6-8 attacks a day, for months. My Dr. down below was lost (Migraines again), so I printed out a paper on CH. with my symptoms circled. He put me on Carbazamine (?) and Demerol pills for pain. That worked well for two years, except when I went off my mountain! Going down, never a problem. Coming up, I was in torture. Was advised to up the Carb to 1200mg max. I did, gradually. My salt tanked, everything I saw was triple vision. Finally, I was referred to a Neurologist. That response was "Why didn't you come sooner?" This Dr. has helped. Verapamil (?) worked, but it caused Hyperplasia (tissue overgrowth of the gums), so I had to stop taking it. Next came Diltizem (?).  Not nearly as effective, but controlled most random CH's and seemed to shorten the spring and fall sessions.
Now, they are back!!!! Attacking at 9:30, 12:00, and 3:00 at night. Needless to say, sleep is NOT happening when you get about 15 minutes sleep between cycles. I was put on Prednizone (?) blister pack. Worked great, till I got down to one a day, and back they came. Called the Dr. and begged to start another course and then a maintenance  of two a day for two weeks. Nope, got Prozac instead. Well, being stubborn, I informed the receptionist that I was going to take 5 yesterday and then taper off with the supply of 30 for once a day. They were offended that I was taking the lead since their lead was not working. I slept all night!
At this point, I am willing to lose all my teeth (I think) just to end this pain and will revert to Verapmil (?).
Well, I don't really want to do that. Dr. said O2 was way to expensive and would not prescribe it. Now, this Dr. said that Clusters don't occur at night and I should sleep in a BArca-lounger!!!! Time to take this on myself and just pick up some pain meds 3-4 times a year.
I am trying caffeine and it seems to help with the 3:00am session, but not otherwise. However, I do have a gas welder in the basement and will try the O2 on the next one. Also, there is a dive shop about 100 miles away and they should be able to help me get the setup right without fighting Medicare and paying a fortune. I tried the O2 shop in town for a portable tank and mask, but was told I would have to have O2 scripted for 24/7 to get any portable unit.
I am in NC mountains, past 60, mother of three, and own a retail business. Dr.'s I have found are totally clueless. Current Neurologist is at his wits end and appears unwilling or unable to help. As I am talking to his receptionist, he is providing input in the background but not getting on the phone. His position is that I have so many allergies to meds that he has nothing else to offer but Prozac. I am married and the side effects will not be welcome in my bedroom.
Any ideas? Know anyone around here?
Guess I should post symptoms: Drilling into my left temple is a railroad spike that just came from a blacksmiths tongs. Someone has hooked up alternating current to my left eye which extends to the back of the optic nerve. I know every branch of my trigeminal nerve from the top of my head to my mandible and out my ear. That octapus (?) cannot be put back once he comes out - he is there for 2 hours. My metal headboard is bent, so now I hit the bathtub and run screaming hot water so I don't expose my husband to my wanting to rip my own head off. There I can sit for an hour and continually splash my face gently and cook the rest of me for distraction. Cold makes it worse, perhaps because of the violent nerve pain. I used to be able to lightly touch and stroke my pain back into my temple where it was managable, but no longer. I have had MRI's. MRA's and tests for other head issues, with no positive results. The only test that showed anything was the EEG years ago. The hospital where my Dr works is 1 hour away, so that is a 3 hour trip at night and not a viable option. The local hospital refuses to call my Neuro for guidance and gives a muscle relaxant saying that I am 'drug seeking'.
The pain is fast in hitting, excruciating, and repetative (?)
I am convinced that you guys are better at this than any Dr I have found in NC.

Big question: Anyone had their iris on the pain side change colors? Dr says it doesn't happen, but I found an article that says it can and does. The article was written by a specialist in iris color (didn't know there were specialists for iris's). Mine started turning much lighter 4 months ago. No glaucoma or lack of blood flow to the eye, so I get to go to a specialist for this now!
Sorry for all the spell errors, I just am racing the clock (wonder why) and could not take the time to correct. I hate drugs!!! At least the ones they have me on now. All shaky, stupid, tired, and hungry.
Thanks to all.
spiny
"not all who wander are lost"

Lord Spiny you have had your share of incompetent doctors. In this day and age, to still hear these stories are inexcusable.

Yes you do need a script for 02 but it is the holy grail for most of us here. Knocks most ha's in 10-15 minutes. Get the 02. It is NOT expensive and is safe. You will neeed a regulator with at least a flow of 15 lpm, 25 lpm is better. Also a non-rebreather mask not nose cannulas. Keep on reading and learn all you can and welcome to the board.