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Tuesday

New here, help...advice??

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Hello. I am in my third cluster headache cycle, it just started today. I got my first cluster headache about a year and a half ago. I was sitting at my computer and then all of a sudden I felt like someone had shot me in the head through my right eye. My vision blurred, I screamed out loud and actually collapsed to the floor. I crawled (the pain was too intense to get up) to my bedroom and curled up in a corner rocking back and forth, crying out loud. It stayed the same intensity for what seemed like an eternity but was about 30-40 minutes, and then was gone. I felt drained and shaken, crawled up to my bed and abruptly fell asleep. It was strange and painful, but in my mind at least it was over. Imagine my shock and horror when the next day I was greeted with the same pain all over again. I immediately made a doctor's appointment. I have history of brain tumors and anyeurisms in my family so my doctor was concerned. He sent me for an MRI, which came back normal. After that he told me about cluster headaches and said he thought this was what I had. He told me to keep track of the frequency and pattern of my headaches. He also gave me some Imitrex which he admitted would probably not help much since it needs to be taken before the headache to be effective. I had about 10-12 of the headaches over the next 2 weeks and then they stopped. I had a similar episode about 3 months later, but then nothing until today.

Naively I thought they might have been gone for good. This morning I awoke with a start with the familiar intense pain, always on my right side. I cried out from the pain and the helplessness. The resignation of knowing I will have to go through this again tomorrow and for who knows how many days?

I have never tried to treat these in any way, thinking it was hopeless. I have pretty severe anxiety and take Paxil for that, otherwise I am drug free. I have experimented with many drugs recreationally and am open to try anything that will help with this horrifying pain! So please, give me your advice, success stories, and suggestions. Thanks!

~Tuesday

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Welcome to the community Tuesday!!  Sorry as hell you had the need to find us though!!

If you aren't using O2, read the info on the O2 tab under the menu tab on the left upper side of the screen.....something you'll also want to have in place if you begin busting.

You'll find much to read in the clusterbusters files section of the board regarding the different "busting" methods!!

Welcome Home!!

Dallas Denny

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Tuesday, that oxygen information can be a little daunting, though you should read it. It doesn't sound like you're using oxygen (O2) at all, so the first thing I think you need to do is call your doctor and request it -- demand it; don't take no for an answer. At least make a prompt appointment so you can demand it. It can make a huge, huge difference, and not enough doctors are aware of it, or prescribe it properly.  (O2 is provided by a medical supply company through a prescription from your doctor.)

If you need help knowing what to ask for, people here will help you. You must get a big tank, a high-flow (15 liters per minute) regulator, and a non-rebreather mask. There are articles from major medical journals you can show your doctor about how effective this is. I posted a pretty long message about O2 to JillyfromPhilly in the General Board in her thread "verap, anxiety, antidepressants and other fun stuf"; you might want to look at that.

There are a lot of other short-term abortives discussed here at this board. I'd say, from my observation, that chugging RedBull or some other high-caffeine-plus-taurine beverage is pretty high on the list, and some have suggested going outside (if you live in a cold place) and inhaling cold air strongly through your nose. Others will have other ideas, or you will find them by browsing through the messages.

Also, I think your doctor was wrong about having to use the Imitrex "before the headache," but others can tell you more about that, since I'm not the CH sufferer in my family, my daughter is, and she, like you, treated it with nothing at all (except that she did it that way for six years, if you can imagine!). (She had been given the wrong oxygen prescription by her doctor, and therefore assumed that oxygen "didn't work" for her. When she got the right prescription, everything got a lot better.)

I believe that others here more knowledgeable than me can help you, and will help you, with anything you need to know about the "busting" method or anything else.  I think they might suggest that if you can abort attacks with something other than Imitrex, you should.  But I will let them take over.

You have come to a great place. The people here probably saved my daughter's life. Things will get better for you!

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Imitrex pills will not work well for cluster headaches because they take too long to be absorbed in the body. Imitrex (Sumatriptan) injections ans nasal spray work very well to abort the cluster headache. However, there is strong anecdotal evidence that it may perpetuate or elongate the cycle. It may also increase the frequency of what are known as "rebound" headaches, which are essentially drug induced headaches.

The Oxygen approach works for many as a headache abortive. Even if it doesn't work completely for some, it helps to reduce the pain level significantly. This is a very easy fix, however, many doctors are slow to prescribe it. You really need to press the request if you get any resistance. Take the information to the doctor and have him/her read it.

It sounds like you have a good doctor already, but you should probably consider seeing a headache specialist. Most GPs and neurologists are just not that familiar with cluster headache, and in many cases either misdiagnose or mistreat. A headache specialist is more likely to have familiarity with CH and will get directly to the appropriate diagnosis and treatment. Be careful though, because even they will go straight to heavy prescription drug use. Avoid that as much as possible because they all have significant side effects, some that sneak up on you.

The natural methods here seem to work for many, although it takes some trial and error to find the magic. One issue you may have is that you need to wash out of all meds in order for LSAs to be effective.

Paxil is an SSRI which will inhibit the effectiveness of LSAs because of its effect on serotonin receptors. Dropping off of Paxil and other SSRIs can be very difficult. Do a search on the internet for "SSRI discontinuation syndrome" to learn more.

In the short term, get the O2 and at least a 15LPM regulator with a nonrebreather mask. Read the board as much as you can about other short-term aborts, like energy drinks, etc. They can help a lot.

Regards. -T

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I was sitting at my computer and then all of a sudden I felt like someone had shot me in the head through my right eye.

Never relax ever.

Welcome and you have gotten good advice above.

http://www.plainboard.com/ch/chtherapy.pdf

Study and read, knowledge is power

the bb

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Welcome. There's a lot of new stuff here for you to read and learn. You'll be better for it - I promise. Everyone here is anxious to help you. All you have to do is ask.

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Thank you all so much for your advice and support! This seems like a really helpful forum/community. I am glad I found it. I have been doing a lot of reading here and in general and feel more hopeful about treatments. Energy drinks are kind of out, I try to avoid caffeine due to my anxiety, also stopping my Paxil is not really an option right now, my anxiety is fairly severe and I am not emotionally stable enough yet to go med free.

Again, thank you all so much, I am planning to talk to my Dr about the oxygen right away. I am also reading/looking into the other suggestions offered. :)

~Tuesday

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Given your current med issues, REALLY REALLY push the doc for the 02. It's been my primary abort for many years, literally 6-8 minutes huffing and I'm pain free. I'm not a buster yet, but the people on this board have many years of collective experience for you to draw in. Please keep us posted.

Joe

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Welcome,

Please read, read, read, and read some more. We are always here to answer questions and be a shoulder. There's big hope here and we have plenty to spare. I hope you find relief as I have and look forward to your success story.

Mad6string

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Welcome Tuesday!  I take Prozoc.  Shrooms are supposed to work even if your on anti-depressants.  I used HBW seeds but I had to take a riduculous amount to get results.  Messed my stomach up pretty bad for weeks.  I understand about not quitting the Paxil, I have OCD and I am a wack-o without Prozac. Hell, i'm wacky on it too.   ;)   Hang in there and keep us posted.  So glad you found this place, it is sanctuary for CHers!

Raquel

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I was sitting at my computer and then all of a sudden I felt like someone had shot me in the head through my right eye.

Never relax ever.

Welcome and you have gotten good advice above.

http://www.plainboard.com/ch/chtherapy.pdf

Study and read, knowledge is power

the bb

What do you mean "never relax ever"  - I've always found that the best way to avoid being hit is to be busy and absorbed.  Is that what you mean?

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What do you mean "never relax ever"- I've always found that the best way to avoid being hit is to be busy and absorbed.Is that what you mean? 

Although I never found it to be true for my CH, I've heard many folks say that "lack of stress", after a period of stress, is a trigger for them

DD

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Although I never found it to be true for my CH, I've heard many folks say that "lack of stress", after a period of stress, is a trigger for them

I am one who has experienced this. When I was getting hit regularly, it was usually in the evenings after getting home from work.  My wife even thought that maybe she was causing my CH.

My theory is that she may not have been so far from the truth.  I propose that there are different types of stress.  The stress that some have at work is different from the stress faced at home.  At work, one is usually working at a specific goal or goals.  At home, the stress can come from many different directions: relationships with the wife and kids and financial problems, to name a few.  Although most have long term goals (problem solving), the stress at home can be something that one has to deal with on an ongoing basis.

Just my two centavos,

Bob

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Welcome Tuesday,

I'm glad you've found us.  O2 has been remarkable for me, and this group is amazing.

Keep communicating and reading.

Keith

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About the stress, or more relaxation. If i stay on my feets i dp allot better then sitting down and "relax". Some days i need to be in constant movement. Like driving car, it takes about three to five min, and i feel some shadow or whatever. On bad days driving a car is not my best choice. It helps to keep window or windows open, drink some Red Bull, things like that. But in general, relaxing is not the best for me. Listen to your body what it tells you :)

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Bob's dos centavos above are uncannily accurate for me as well;... my wife has said pretty much the same thing, and I never seemed to trigger in steady high pressure situations, it was usually the reverse. Yet another facet on the gem of our collective weirdness.

Tuesday, you have gotten the advice of forged-in-the-fire experts above. Sorry that you actually need it. About the paxil, though...many busting options, as noted above (many really effective ones, at that) cannot be used or will not work while you are on 'synthetic' SSRIs. The Paxil is a dubious substance which yields diminishing returns; Once you get clear of this cluster (and I pray you do soon) do some serious research on this subject. None of this class of pharmaceuticals are good for anyone long term, especially for cluster sufferers as they literally are poking you in your most sensitive places. Good luck.

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I wonder what percentage of cluster sufferers have been on an SSRI.

My clusters started when I was on effexor XR and I hardly believe it was coincidence.

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Count me in. It took me a long time to realize it but the relaxing thing is right on the money. Sucks but true.  I have never seen it mentioned or discussed.

My wife said the same thing too Haha.

( I thought I got alergic to her.)

I guess I would rather have clusters brought on by relaxation rather than be allergic to my sweet little wife.  :o :o :o

Dan

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I meant to first say welcome to the "board of the damned" to you Tuesday. Ha. it is usually my favorite opener 8-)

Speaking of ice breakers...the best one ever is in the movie Deliverence. When Ned Beaty was at the dinner table toward the end of the movie. All was quiet at the table...for a long time...and  he said "this corn is special" .  Best one liner ever.

Sorry you had the need but glad to have you aboard.

We are all here for you.

Dan

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