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stopjuststop

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Introduction
Nov 17^th, 2013 at 3:04am

CH has a new place to play and unfortunately I think it's me. This is the end of my 2nd week experiencing this. First week, I thought maybe I had a sinus infection. i had never had one and everybody kept telling me it can result in bad headaches until it's clear. The weekend came, I met some friends at a bar and drank a vodka soda as I usually do. Almost immediately I started feeling pain building up in my temple, cheek, gum area, right nose clogged up out of nowhere on the pain side. I left the bar and walked around only for it to get worse. i had to get out of sight so I walked into the next door restaurant and headed to a bathroom stall where I remained in really bad pain for the next 30 minutes only for it to stop out of nowhere after the 30 minutes. I went home. Saturday, nothing and no drinks either. Sunday drank with friends watching football. Felt one coming, ate something and it went away fairly quickly. Went home later, cracked a beer for Sunday night football half way through came similar bad pain as friday. Took a hot shower and constantly held a hot rag on my face that only took a fraction of the pain away, but it was something. This happened two more times that night. I took 3 showers in 4 hours. Now I'm worried, went to the Dr. Monday. Tell him what's going on, he says pretty sure i have cluster headaches. I had never heard of these. I get home and start researching and came across this lovely site where I have been lurking, researching everything all week. Big thanks to the Red Bull tips bc this entire week it has worked every time but once, today, but it was "tolerable", paced in my house for 30 minutes. I have been also taking 10mg of Melatonin before I go to bed and it has worked most nights i think but last night woke up twice. Delt with it bc i didn't want to chug a redbull and not sleep when it was over. I am going to the Neuro for the 1st time Tuesday. I am nervous but I have 95% accepted my fate. Still holding out 5% hope they laugh at me and tell me it's sinuses or a tooth or something but so far, all symptoms, triggers and even the abort methods used so far work on me. I am already dealing with the frustrations of friends not taking me serious and saying, oh i've had a migraine...sinuses etc. My dad being one of them until he did his own research and just bought me a case of redbull, which was really nice. My Dr admittedly said he does not know much about them but prescribed me Sumatriptan. I have not taken one yet. Could it work during an attack?? I'm sorry this is long but I wanted to get it off my chest, I'm very nervous. Even if the best case scenario happens in the 5% hope, I am glad I found this site even if it was to give me a peace of mind during this time of uncertainty. So thank you. I am a 33 year old male. Also, one more question. How does somebody know when their cycle is over (if at all) and life can get back to normal until the next cycle? I really want a beer Sad

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« Last Edit: Nov 17^th, 2013 at 3:18am by stopjuststop »

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Mike NZ

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Oxygen rocks! D3 too!

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Re: Introduction
Reply #1 - Nov 17^th, 2013 at 3:30am

Hi and welcome

You're doing well getting to see a neuro so quickly who hopefully should be able to give you an accurate diagnosis to get the treatment you need for whatever you're going through be it CH or something else.

I think you've already worked out that alcohol is a trigger for your headaches, which is very common with CH, so I'd skip it for now. I know that this isn't what you want to hear, but given a choice between a CH and a beer I know what most people will choose.

Start preparing for seeing the neuro by starting a headache diary. Note down when you get a headache, what the symptoms are, how long it lasts and how painful. Then add any notes on what might have caused it which could be food, stress, weather or similar. This will help with the diagnosis.

Also work out what questions you want to ask and write them down. That way you'll not forget to ask them which is so easy to do.

For sumitiptan there are three forms, injections, nasal spray and tablets. The first two work best with CH, with the tablets better for migraine. They should be used early on in a headache to get the best effect. Your GP should have given you good instructions on how to use it.

Read up all you can. There is lots of information here and ask all the questions you think of.

Keep us updated with how you get on.

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Guiseppi

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Re: Introduction
Reply #2 - Nov 17^th, 2013 at 9:24am

Welcome to the board, so glad you found us. Sure sounds like you've joined the club no one wants to be a member of. As far as when a cycle ends, mine would run 8-12 weeks with one that ran 8 months, it varies widely from person to person so only time will tell. If the neuro confirms it is CH, make sure he offers you the option of oxygen as an abortive:

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

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Do let us know how the neuro appointment comes out, wishing you some pain free time soon.

Joe

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Bob Johnson

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Re: Introduction
Reply #3 - Nov 17^th, 2013 at 12:24pm

Before you get swept up in all the treatments you will receive here--get yourself to a doc who knows headache disorders!

Your doc admits to no knowledge/experience. That's sufficient honesty on his part to seek skill. This is not a simple disorder which is controlled by formulaic treatments.

His offering Suma. pills is evidence: it's the least effecive form of this med for Cluster (injection form best).
===
LOCATING HEADACHE SPECIALIST

1. 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.

2. 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.

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

or

; On-line screen to find a physician.

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

or

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.

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

or

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.
================

IF you go to a headache doc, be sure to tell him what you are using/taking currently. Confuses his plans if he doesn'st know.

Print the PDF file, below. Nice tool to use in discussing treatments with him.

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

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. Two books, one free, available as an e-book; second aimed as professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.

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(96 KB | 16 )

Bob Johnson

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stopjuststop CH.com Newbie Offline I Love CH.com! Posts: 13	Re: Introduction Reply #4 - Nov 17^th, 2013 at 7:20pm Thanks, y'all. i will update after Tuesday. I have a feeling I'll be a very frequent member to this forum. i woke up twice last night even though i took 10mg of melatonin. Today i have been 100% pain free so far. Was with friends all day moving around so maybe that helped but now that I've gotten home I'm hoping I can keep it up.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Introduction Reply #5 - Nov 17^th, 2013 at 9:55pm Hi stopjuststop, I've just posted an old thread on the message board. "Thinking about tempting the beast" Check it out. As for the Melatonin, it can take up to 3wks to kick in. Hoppy.
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wimsey1

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Re: Introduction
Reply #6 - Nov 18^th, 2013 at 8:22am

You've been given good advice: a good headache specialist, line up your aborts (energy drinks, O2, Imitrex) and get a long term preventative if you have a cycle long enough for it to take effect. With any luck you are episodic with short cycles. Pain is the same but the abortives handle most of it. Let us know how you get along. God bless. lance

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TeeJ2379

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Re: Introduction
Reply #7 - Nov 18^th, 2013 at 9:00am

stopjuststop wrote on Nov 17^th, 2013 at 3:04am:

CH has a new place to play and unfortunately I think it's me. This is the end of my 2nd week experiencing this. First week, I thought maybe I had a sinus infection. i had never had one and everybody kept telling me it can result in bad headaches until it's clear. The weekend came, I met some friends at a bar and drank a vodka soda as I usually do. Almost immediately I started feeling pain building up in my temple, cheek, gum area, right nose clogged up out of nowhere on the pain side. I left the bar and walked around only for it to get worse. i had to get out of sight so I walked into the next door restaurant and headed to a bathroom stall where I remained in really bad pain for the next 30 minutes only for it to stop out of nowhere after the 30 minutes. I went home. Saturday, nothing and no drinks either. Sunday drank with friends watching football. Felt one coming, ate something and it went away fairly quickly. Went home later, cracked a beer for Sunday night football half way through came similar bad pain as friday. Took a hot shower and constantly held a hot rag on my face that only took a fraction of the pain away, but it was something. This happened two more times that night. I took 3 showers in 4 hours. Now I'm worried, went to the Dr. Monday. Tell him what's going on, he says pretty sure i have cluster headaches. I had never heard of these. I get home and start researching and came across this lovely site where I have been lurking, researching everything all week. Big thanks to the Red Bull tips bc this entire week it has worked every time but once, today, but it was "tolerable", paced in my house for 30 minutes. I have been also taking 10mg of Melatonin before I go to bed and it has worked most nights i think but last night woke up twice. Delt with it bc i didn't want to chug a redbull and not sleep when it was over. I am going to the Neuro for the 1st time Tuesday. I am nervous but I have 95% accepted my fate. Still holding out 5% hope they laugh at me and tell me it's sinuses or a tooth or something but so far, all symptoms, triggers and even the abort methods used so far work on me. I am already dealing with the frustrations of friends not taking me serious and saying, oh i've had a migraine...sinuses etc. My dad being one of them until he did his own research and just bought me a case of redbull, which was really nice. My Dr admittedly said he does not know much about them but prescribed me Sumatriptan. I have not taken one yet. Could it work during an attack?? I'm sorry this is long but I wanted to get it off my chest, I'm very nervous. Even if the best case scenario happens in the 5% hope, I am glad I found this site even if it was to give me a peace of mind during this time of uncertainty. So thank you. I am a 33 year old male. Also, one more question. How does somebody know when their cycle is over (if at all) and life can get back to normal until the next cycle? I really want a beer Sad

Your story is similar to mine - I am sorry to say that - But know that there is hope - I am free of the beast for three months after three months of trying to figure out my first cycle. This site was / is my life line. Stay positive - you will get through this. I know how scary the first trip is - but once you arm yourself with some aborts and start to record and track your patterns you will learn to fight the beast back. Don't lose hope - this too shall pass and you will be stronger for it. A Predisone taper may help you until you get on your prevent built up in your system- ask your neuro about it. Most prevents need 2-3 weeks to build up before becoming affective. Also, look at the d3 info on this site - I think its very affective in control my CH.

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Pain is a wonderful teacher and motivator...

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stopjuststop

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Re: Introduction
Reply #8 - Nov 19^th, 2013 at 12:40am

newbie curiosity question as I just discovered the "kip scale" here. When somebody gets a 10 (pretty sure i was close once or twice after drinking before i knew what was going on) it says ER. Does going to the ER help at all during a horrible one or is it just instinct to go? Can they do anything? I just would like to know if I get a 10 if im in danger and should go bc my personality has always been to power through things and can be stubborn. thanks!

Been pain free since 1:00pm and it's awesome don't want to go to bed and enjoy it! But I must. I wonder if hanging out with friends helps bc it seems when I am around people socializing I haven't had one yet. Well after I realized to not drink.

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« Last Edit: Nov 19^th, 2013 at 12:43am by stopjuststop »

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Hoppy

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Re: Introduction
Reply #9 - Nov 19^th, 2013 at 2:10am

stopjuststop wrote, I just would like to know if I get a 10 if im in danger and should go bc my personality has always been to power through things and can be stubborn. thanks!

The answer is no if they are CH's. Like you said you just have to power through them. But with the right meds and oxygen, you should'nt have to suffer like that.

Hoppy.

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« Last Edit: Nov 19^th, 2013 at 3:48am by Hoppy »

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Introduction Reply #10 - Nov 19^th, 2013 at 9:30am What Hoppy said! While a 10 might make you wish you could die, the only positive side to CH is they don't kill ya. Joe
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stopjuststop

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Re: Introduction
Reply #11 - Nov 19^th, 2013 at 5:00pm

Well i saw the neuro RN, not the actual neuro but she said she has had CH patients before. She pretty much agreed that's what's going on, so here I am! She gave me a steroid script to take for 9 days to see if it may break it as well as the 20mg nasal spray if needed. I have the shots available if i choose to go that route at the pharmacy. I admittedly wanted to just try the spray first bc i hate needles esp the thought of doing it myself. if this doesn't work, she said she would script me oxygen. Said it's expensive so trying all of this first. In other news no attacks since around 1PM yesterday so maybe (hopefully) I'm fortunate and have a small cycle of this! (It's been 3 weeks)

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Potter

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Re: Introduction
Reply #12 - Nov 19^th, 2013 at 5:31pm

stopjuststop wrote on Nov 19^th, 2013 at 5:00pm:

Well i saw the neuro RN, not the actual neuro but she said she has had CH patients before. She pretty much agreed that's what's going on, so here I am! She gave me a steroid script to take for 9 days to see if it may break it as well as the 20mg nasal spray if needed. I have the shots available if i choose to go that route at the pharmacy. I admittedly wanted to just try the spray first bc i hate needles esp the thought of doing it myself. if this doesn't work, she said she would script me oxygen. Said it's expensive so trying all of this first. In other news no attacks since around 1PM yesterday so maybe (hopefully) I'm fortunate and have a small cycle of this! (It's been 3 weeks)

If she said that I would change doctors.

Potter

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Introduction Reply #13 - Nov 19^th, 2013 at 5:55pm Hi stopjuststop, Is the steriod Prednisone. If so at what dosage. Hoppy.
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stopjuststop CH.com Newbie Offline I Love CH.com! Posts: 13	Re: Introduction Reply #14 - Nov 19^th, 2013 at 6:18pm If none of this works, I probably will go to another Dr. Yeah, it's prednisone @ 20mg
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Guiseppi

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Re: Introduction
Reply #15 - Nov 19^th, 2013 at 6:23pm

The steroid taper does stop the cycle for a very small percentage of CH'ers. I suspect you'll find when you're on the steroids, you may end up headache free. For me, at doses as low as 20-30 mg a day, prednisone will provide a 100% break from attacks. But when I go off the prednisone, they come back MUCH stronger then before. Not said to scare you, just want you to be prepared. And don't consider staying on pred long term, it's a highly destructive med for short term use only.

The nasal spray works well for many, I never tried, I used the injectables which were awesome......but really pricey!

Oxygen is dirt cheap. For many years my health plan wouldn't cover it, so I rented an E-Tank, $4.50 a month, and paid cash for the refills, $12-$13. A regulator can be bought off E-bay for under $50 bucks or rented. So for less then the cost of ONE Imitrex injectable, you can get set up with Oxygen. APRIA will deliver tanks and a regulator, my insurance, CIGNA covers it now. When they compare the per abort cost to imitrex they're pretty happy to pay for the oxygen.

Hoping you're one of the lucky ones and the pred taper stops the cycle. Would strongly suggest you start the regimen today as the odds are when the pred runs out beasty will be back:

Follow this link to the medications section of this board and read the post

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

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

Joe

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stopjuststop CH.com Newbie Offline I Love CH.com! Posts: 13	Re: Introduction Reply #16 - Nov 19^th, 2013 at 6:36pm Thanks. I hope it works too and thanks for the heads up if it comes back. I saw that the other day. Not to make myself sound stupid but i didnt really understand all that language. In layman's terms, I take two of each of those pictured a day? I can do this on the pednisone too?
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Introduction Reply #17 - Nov 19^th, 2013 at 7:29pm After 9 days if no relief then stop. Go back to your doctor and get her to prescribe Verapamil it's the preferred treatment for CH's. Hoppy.
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Introduction Reply #18 - Nov 19^th, 2013 at 7:56pm Yes, you can start the vitamin D regimen now, it's okay with any of our CH meds. Joe
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stopjuststop

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Re: Introduction
Reply #19 - Nov 20^th, 2013 at 6:58pm

Haven't even started the Prednisone yet bc i have been pain free since two nights ago when i woke up with two very small ones that didn't last long at all. No point of putting that stuff in my body if maybe (hopefully) this 1st time cycle is over. hoping I have a small case of these. It sucks but i can handle 3 weeks especially after finding abort methods, mainly red bull so far, and a peace of mind from y'all awesome people. fingers crossed.

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