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Newly Diagnosed and new here (Read 2661 times)

John C

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Newly Diagnosed and new here
Aug 12^th, 2009 at 10:19am

I am new to this website and I have been reading the posts on this site and have been getting a lot of good information(paricticually the Red Bull). I am a 39 year old Male with many other medical problems including Diabetes. Yesterday I was diagnosed with one more problem to add to the list: Cluster headaches. I spent 7 hours in the emergency room because my GP would not do anything or give me anything and referred me to a neurologist. For the past 2-3 weeks I have been having 2-3 HA per day (before that I had only been getting one a day or less since the beginning of June) and these past 2 weeks have been unquestionably the worst time of my life. I told my GP that I was in unimaginable pain and he still would not prescribe anything even though he suspected Cluster headaches. The neuro can not get me in till the 21st of this month and sugested I go to the ER. So I did yesterday. I had 3 HA while I was there and they gave me a shot for each one. One was turadil (not sure about the spelling) that worked great and one was imatrix. also worked. don't remember what the 3rd one was but did not work. Also had a CT scan on my head and that showed normal. So the ER doc made the diagnosis of CH. This was what I REALLY did not want, but he prescribed verapamil and imatrix. Even though I don't see the neuro for another week, I have some meds that might help. That is encouraging.
Another weird thing is, I can remember having these same HA's almost 20 years ago. Nothing was done then and they eventually went away, but if that was CH then that is a long remission.
I am actually a little down about going through life with these HA and can't imagine it, but I have this website and fortunately a lot to live for (2 bueatiful daughters and a wonderful wife). I do have to admit during a couple of the episodes death seemed like an easy solution but one I would never follow through. Just wanted to tell my story and introduce myself.

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Bob Johnson

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Re: Newly Diagnosed and new here
Reply #1 - Aug 12^th, 2009 at 10:51am

Glad you found us. Let me throw some early learning stuff at you so that you can begin to understand how to manage your new companion.

Explore buttons (left) starting with OUCH and the many internal links.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

(Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
========
If your docs are using meds like this, it's a sign they know their stuff.

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

Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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

===

Keep us abreast of your doc's efforts and be specific with questions.

Bob Johnson

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Melvyn

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Re: Newly Diagnosed and new here
Reply #2 - Aug 12^th, 2009 at 12:30pm

Hi John,

sorry your here but glad you found us. We know just how you feel. CH can be a lifetime sentence but you may find something to reduce your pain here. What you will definitely find is help, suppoprt, understanding and empathy from fellow sufferers.

I hope you will find the words of sympathy and encouragement will strengthen your resolve to battle with the beast as we all do.

Read the articles suggested you will find them helpful - make sure your nearest and dearest read up on it too - they need to understand what you are going through.

I find that melatonin at 9mgs. per night just about kills off my HA's - try it - it might just work for you.

Whatever happens - stick around - read everything you can on these boards - it helps - believe me.

Melvyn

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John C

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Re: Newly Diagnosed and new here
Reply #3 - Aug 12^th, 2009 at 1:04pm

I will try the melatonin. I have a hard time going to sleep anyway. I will definitly try anything. I am just getting over a CH right this second. This one was about a kip 7. better than yesterday (about a 9 or 10). but I have already taken two of my 4 imatrix. Not cool.
How long does it take for the verapamil to kick in, if it's going to work?
Also how hard is it to get a Rx for O2? my GP said no but hoping the neuro is different

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Bob Johnson

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Re: Newly Diagnosed and new here
Reply #4 - Aug 12^th, 2009 at 1:18pm

Takes 10-14 days for Verap to show itself and it may be necessary to adjust dosing. Suggest you print this article for your info and give to the doc.

Headache. 2004 Nov;44(10):1013-8.

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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Look at button left and on OUCH site for MEDICAL literature on O2. This will give you support with your doc on your request. No question that O2 has become widely accepted by docs.

Bob Johnson

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Val_

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Re: Newly Diagnosed and new here
Reply #5 - Aug 12^th, 2009 at 1:20pm

John C wrote on Aug 12^th, 2009 at 1:04pm:

How long does it take for the verapamil to kick in, if it's going to work?
Also how hard is it to get a Rx for O2? my GP said no but hoping the neuro is different

Hi John,

Welcome! Sorry you are having to deal with this all...

Verap can take a week or two to take effect, but also depends on the dosage. What were you prescribed? The CH folks vary from taking 80 mg a couple times per day to taking upwards of 900 mg per day total - it varies by person. I think the average is 480/day.? Everyone responds differently to meds and until you know what you need, it will take time to ramp up to a dosage that may work for you.
In the meantime, print out the oxygen info to take with you to your neuro - this might help. It did with mine. It took me reading up and a fight to get O2 but its much better than imitrex! And there is no 2-shot limit - I use O2 6 times per day if I get hit 6 times!

As for what you can do until your appt - try drinking an energy drink with caffeine and 1000 mg taurine (like red bull, rock star, etc) at the first sign of a headache. You can try ice (or heat if Ice doesn't work) applied to your face or the back of your neck, cold (or hot) shower, etc.
There are many tricks that can knock the hit down a level or make it a bit more bearable. Melatonin helps me get thru the night with less pain.

Hoping something helps you a bit, Wink

Val

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John C

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Re: Newly Diagnosed and new here
Reply #6 - Aug 12^th, 2009 at 1:56pm

I have a rx for 240mg for the verapermil. I was hoping it would work sooner, but that was just wishful thinking. I also just called my GP and told him about my trip to the ER and said that I would need refills for the intramix since I only have two left. The jerk said he would have to see me first, can't figure that one out since he just saw me in June and I have been practically begging him (over the phone) for some meds. I think I will definitly need to find a new GP. I just can't figure out why he let me suffer for the last two weeks, unless he was afraid to prescribe me anything.
Also told my wife to stop at the store on the way home to stock up on the Red Bull and go to GNC for the melatonin. She has been a saint through this whole ordeal.

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John C CH.com Newbie Offline I Love CH.com! Posts: 8 St. Louis Gender:	Re: Newly Diagnosed and new here Reply #7 - Aug 12^th, 2009 at 2:08pm another question. After a good CH is it common to feel worn out and light headed. I have also noticed that my neck get real stiff.
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Bob Johnson

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Re: Newly Diagnosed and new here
Reply #8 - Aug 12^th, 2009 at 3:41pm

Explore the OUCH site for material on working with your doc to obtain greater Imitrex supplies. It's very common for CH folks to use large quantities over the short period of an active cycle. The doc, basically, has to press your insurance co. for more Rx.
----
This is the only medical report I've found on the subject. Many people find that strong pain leaves them drained and secondary muscle tension can be experience as the neck pain.

Curr Pain Headache Rep. 2005 Apr;9(2):109-12.
Cognitive processing in cluster headache.

Evers S.

Department of Neurology, University of Munster, Albert-Schweitzer-Str. 33, 48129 Munster, Germany. everss@uni-muenster.de.

[Edited for length.] In neuropsychologic evaluations, a reversible decline of memory processing was detected during the cluster attack, but not between two attacks. Long-term observation revealed no progressive cognitive decline in cluster headache patients over the years. With regard to personality changes, a liability susceptibility to anxiety disorders and to hypochondriasis, but not to mood changes, has been described inconsistently. All changes in alterations of cognitive processing in cluster headache are demonstrated to be mild and do not relevantly contribute to the clinical picture of this disease.

Publication Types:
Review

PMID: 15745620 [PubMed]

Bob Johnson

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Melvyn CH.com Veteran Offline We all need to relax sometimes, somehow. Posts: 105 \|Yeovil\|England\|europe\| Gender:	Re: Newly Diagnosed and new here Reply #9 - Aug 13^th, 2009 at 12:23am Hi John, yes - after a CH I always feel 'worn out' or 'bloody knackered' and the neck is stiff and tense. In fact throughout a cycle I have a tightness in my neck - always feel that if it would relax then maybe the CH would disappear. How about the rest of us?
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Callico

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Re: Newly Diagnosed and new here
Reply #10 - Aug 14^th, 2009 at 3:10pm

Welcome aboard.

After I get over a bad hit I always feel totally wrung out for quite a while. You expend a great deal of energy fighting the beast, and neck tension is not uncommon either.

You have a lot of great info available at your fingertips here. Please avail yourself of it, and feel free to ask questions as you go along. That is why we are here.

Jerry

"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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John C

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Re: Newly Diagnosed and new here
Reply #11 - Aug 20^th, 2009 at 3:29pm

Just went to a headache clinic on Tuesday and they were great. They knew exactly what I was going through and put me on Prednisone to stop the cycle and gave me imitrex injections. He also put in a request for the o2, but have not heard from the supplier company yet. But the amazing thing is(or maybe coincidence), I have not had a HA since Tuesday night. Does the prednisone work that quick or possibly I am at the end of my cycle (it has been about 11, horrific, weeks).
I just wanted to thanks everyone here. I have been doing a lot of reading and was able to ask questions to the HA Dr, and he seemed to back up everything I read.
I am also hoping (and praying) that if this is the end of my cycle my next one wont be for another 20years, since that last round was 20 years ago.
Another side note: anyone in St. Louis check out the Ryan Headache clinic. they were great. They said new patients with Cluster they try to get in right away. They actually could have got me in last Friday, but I already had a MRI scheduled.

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jon019

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Re: Newly Diagnosed and new here
Reply #12 - Aug 20^th, 2009 at 7:21pm

John C wrote on Aug 20^th, 2009 at 3:29pm:

Just went to a headache clinic on Tuesday and they were great. They knew exactly what I was going through and put me on Prednisone to stop the cycle and gave me imitrex injections.

Took 20 years of active ch before I found same...consider yourself fortunate...makes me want to do a happy dance...

He also put in a request for the o2, but have not heard from the supplier company yet.

Call 'em! Don't wait!

But the amazing thing is(or maybe coincidence), I have not had a HA since Tuesday night. Does the prednisone work that quick or possibly I am at the end of my cycle (it has been about 11, horrific, weeks).

Could be either...medrol (methylprednisolone) worked SAME DAY for me...but only once...

Hope for the best...prepare for the worst. ALWAYS be prepared...there is NOTHING quite like the agony of a cycle you are unprepared for...it'll only take once to learn that lesson (me). The SMART person learns from others mistakes, not their own (Bismarck?).

I just wanted to thanks everyone here. I have been doing a lot of reading and was able to ask questions to the HA Dr, and he seemed to back up everything I read.

Smart Doc....and you are at the BEST place for info ANYWHERE...

I am also hoping (and praying) that if this is the end of my cycle my next one wont be for another 20years, since that last round was 20 years ago.

Us too John...us too!!!

Another side note: anyone in St. Louis check out the Ryan Headache clinic. they were great. They said new patients with Cluster they try to get in right away. They actually could have got me in last Friday, but I already had a MRI scheduled.

That there is GOLDEN...and just confirms what you described above. Typical wait for a neuro appt is 1-3 months. The FIRST time I called the clinic I attend...they got me in in 3 DAYS! Both Docs I have seen said to call them if the scheduler gave many any problem...never had to do that since they all get it...clusterheads need help NOW! What you have found is PRICELESS!

Best and welcome,

Jon

The LARGE print giveth....and the small print taketh away. Tom Waits

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BarbaraD

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Re: Newly Diagnosed and new here
Reply #13 - Aug 21^st, 2009 at 12:07pm

John,

Welcome to Clusterville.

The pred should work long enough to give the verap time to get into your system. CALL the O2 people and get them on the ball. You don't need to wait on it.... you need it NOW!!

About the trex..... Read the info on cutting down the dose... Most of the folks on it have found that they can get two or three shots out of a ONE shot shot. They can explain it better than me since I don't use trex to abort. Those things are so expensive that anything we can save is worth a little effort.

The melatonin I'll second.... Have been on it for years and it works to stop those night hits really well.

Wish you'd have found us about a month ago -- we (or a bunch of us anyhow) were in ST LOUIS. We could have bent your ear up close and PERSONAL.

Stick around and read read read. Ask questions and we'll try to answer as best we can.

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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John C

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Re: Newly Diagnosed and new here
Reply #14 - Aug 22^nd, 2009 at 12:48pm

I heard back from the supplier company for the O2 and they said insurance denied it. At the time I was not to worried about it since I was HA free since Tuesday night and the prednisone seemed to be working miracles. I also had just picked up the imitrex injections. As of last night I actually felt life was back to normal. I even considered having a beer (or two).
All changed this morning at 3am. Another #%&*ing HA. 3 days with no HA and had one at 3am and another one a 5:30am. The funny thing was I had not used the injections yet, and I tried it at the 5:30am one. Very tired and in a lot of pain, it was kinda comical, me trying to rip the paper off then put the shot together, and of course, I forgot to inject it into the fatty part of my leg. I must have hit the muscle, because my leg is bruised and sore were I did it (top of my leg, not the side). but it did work in about 15 minutes. I guess that's good, but I only have 5 shots left.
I guess Monday, I will try to speak with Insurance and find out why they won't pay for O2. The injections were like $600 for 6 shots (outrageous). O2 has to be much cheaper. Can't figure that one out. Anyone have any success dealing with the insurance companies and changing their mind? Not sure what to do about that.
This morning was a little discouraging. I thought it was over and apparently the beast was just teasing me. I told my wife this morning, if I was a girl I would cry (no offense, women). Oh well, I guess the best thing to do is just deal with it and move on.

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BarbaraD

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Re: Newly Diagnosed and new here
Reply #15 - Aug 23^rd, 2009 at 7:09am

John,

Get with Chuck or Pete and see how the RX needs to be written for the O2. Your doc may not have ordered it right.

But even so - the O2 is "cheap" and you need to get on it. The whole set up for the O2 is probably less than 1/2 the price of a trex shot. And filling a tank is about 10-15 per E-tank.

But your insurance should cover it if the RX is written with the "proper" words.

Hugs BD Kiss

What don't kill ya, Makes ya stronger!

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Kay CH.com Newbie Offline I Love CH.com! Posts: 15 Omaha, NE Gender:	Re: Newly Diagnosed and new here Reply #16 - Aug 23^rd, 2009 at 9:47am I don't know about St Louis, but here in Omaha we can get unlimited supply of O2 for $60 per month. Much, much cheaper than the nearly $200 per box of 6 of the trex.
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lorac

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Re: Newly Diagnosed and new here
Reply #17 - Aug 24^th, 2009 at 8:12am

john...welcome.

I use Zomig to get rid of my pain, and It is $191. per six doses.
Since my insurance will only pay for 1 (six doses) per month....I called around every pharmacy in town, and got that price. some were $300.!
Got my doc to write it up so I can purchase more than once a month.
Then I spray the zomig into the corner of a baggie, (there is only about three drops in there) Then with the head of a pin dipped in it, I put it under my tongue, thus making it last for three doses. And it works just as well. (Darn insurance companies)
As for the O2,,,I did the same thing. and get my e tanks for $10. each.

Good luck to ya. lorac

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John C

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Re: Newly Diagnosed and new here
Reply #18 - Aug 24^th, 2009 at 9:10am

I can remember when the O2 supplier company called she said that she could give it to me at the medicaid price of $120/month. I guess that's not bad, but I am also probably going to start getting bills for all my MRI's and xrays and CT. I imagine that's going to be a lot.
I remember her telling me the Rx said O2 @ 10-15 lpm and a non rebreather mask as needed for cluster headaches. From what I read on this website the Rx seems correct. I going to call them and find out why their denying it. BUT I am still hoping the verapamil and Prednisone will kick in and end this cycle. So far I got hit twice Saturday and Sunday, nothing yet today. Mine are not typical clockwork, they shift forward a few hours each day (which means I am due, shortly).

One other question. can you inject the imitrex in your belly, cause not a lot of fat on my leg and shooting in the back of my arm seems kinda awkward.

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Charlie CH.com Alumnus Offline Happy to be here Posts: 18971 Jamestown, NY Gender:	Re: Newly Diagnosed and new here Reply #19 - Aug 24^th, 2009 at 11:05pm Quote: another question. After a good CH is it common to feel worn out and light headed. I have also noticed that my neck get real stiff. I felt that my pain seemed to "drain" out of my head. I got so relaxed afterwards that I liked to veg out in my recliner. Welcome aboard. Charlie
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