hey hows everyone doing? i'm jules, im 31 and live in toronto....ive been getting cluster headaches most recently I was diagnosed with chronic cluster headaches...I have a son who is 10 and a girlfriend that some how I have managed to keep through all of this though it is very hard on her.....Today I went to see a new dr and in every way possible was told I'm lying and then she refused to see me(I've been waiting for this app for over 3 months)I also recently without choice have tried to go back to work despite the increasing number of headaches I have been getting(9 or more a day)

I guess I finally came on here to talk to someone as it gets harder to deal with with everyday and maybe to have someone that understands this....I feel completely useless and alone and is hoping someone that might have experienced or just want to talk understanding the same thing...

thanks jules

Hun, I know that most of us can completely relate...I actually had one neurologist, which was actually my third one, tell me if I could just distract myself, the headaches would go away, like a toothache...yeah like dentists are imaginary....I know that I havent been a member of this site long but its already a godsend...there is a ton of info here and just knowing there are others that are feeling like you can make you feel a little less like driving a ice pick into your temple....-hugs- hang in there and i got two shoulders...

Jules, glad you found us.

That's a horrific situation you've been dealing with.  :(

I'm going to cut right to the chase - these days most CH'ers can find significant relief, but not so likely just through doctors, because as you've just seen, criminal negligence is rampant in their disgraced profession.

Hordes of CH'ers here have been able to abort their attacks with the sort of high flow 100% O2 that doctors don't tend to prescribe. That oxygen info link on the left will inform you.

Many chronic CH'ers have gone into lasting remission with the clusterbusters method, which can be a more powerful preventative than any prescription drug. I recommend this Newsweek article and this video talk by a fellow CH'er for an introduction:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Also, I see no reason for any CH'er to not go on the relatively new vitamin D3 based anti-inflammatory regimen starting today, as some users are reporting going into remission with it, and it appears to be good for you in many ways regardless:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here's to you finally finding some relief, and toot sweet!  :)

Welcome to the board Jules, good on you Virginia for jumping in there! As Virginia and Jeeber have pointed out, knowledge is your best weapon against the beast. Start educating yourself and get ready to educate a doc or two! We'll help you all we can.

Joe

About what, precisely, did the dr think you were lying? lance

wimsey1 wrote on Nov 23^rd, 2011 at 8:09am:

About what, precisely, did the dr think you were lying? lance

Lemme guess...thought you were seeking pain meds?? Let the doc know the last thing in the world you want are pain meds, they do nothing for CH.  ;)

Joe

So many docs have meager training/experience with Cluster that your experience is all too common. Research has shown that many folks take 2-6 yrs to find good help, moving fromdoc to doc. Hospital ERs are, overall, worse yet.

Given your location, you may have no problems finding an experienced doc. Some of these items will, I suspect, apply to Canada:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.
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Given the length and complexity of you headache history, suggest you avoid self-treatment efforts until you have a solid Dx and guidance.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]

Bobs post is wonderful....the headache website is so informative and I have learned that educating ourselves, since its our body and we know it best, is the best thing in the world for you....keep your head up

Thank you everyone for responding it means the world.....Thank you for all the wonderful info I do try to educate myself as well I have been reading what everyone has to say on here for the past while but now  I have just signed up as with so many bad experiences was shy too(which is really silly since were all here for the same reason...

Thank you for welcoming me to the group Virgina your very sweet and it means a lot as I tried to hide this from everyone in the world for as long as I could but now have chosen to talk about it with others..

Guiseppi.. that was the main thing yes, pain medicine, As well my family dr didn't send my file from my old dr and she accused me of trying to hide things from the start...I was accused of lying for the methods I use to try to battle this as well....the dr laughed at me when I told her I had not been drinking. She (the dr) didn't answer or ask me one question regarding my headaches the only thing she commented on was when I told her that I don't sleep pretty much at all from this, she signed me up for a stay at a sleep group...Her final answer was that the blood test and whats in my liver and the the sleep group will tell her all my dirty secrets and the truth will come out....when she asked how I live financially and if i'm on disability I told her no but that many times the government feels like I should apply for this she started yelling  that's shes not my dr and isn't signing anything with a few other words in there I won't write on here....even though I explained to her that I'm the person I'm and have no care for pain killers or disability she continue to tell me I was lying....There were a few other things like demanding to know why I don't drive and any answer I gave her she repeatedly told me it wasn't good enough and I better come up with another one.......(regarding the pain medicine I had 2 surgeries and refused it as I don't take pain medicine for anything but that wasn't enough for her)

For someone you just met being treated like that and how embarrassing it was. After waiting for so long for this app I guess I was really hoping for a better result...

I'll just add that I stopped seeing my last dr cause he put me on epileptic medicine and I had a bad experience forgetting who I was and where I was at times and he refused to do a follow up..

Lance I think that answers it the best I can thank you

Bob that is a lot of info and I really appreciate it I will be looking into it all as I'm not giving up and will find away to try to settle these the best I can. I'm goning to get my yellow pages right now to start as there is never any time to waste... thank you so much...

Bejeeber..With all the info i have read and many trips to the hospital I see that my previous dr telling me there is only one medicine and giving me oxygen at a level 7 was not the only information or not very good information...(who is a headache specialist)before him I saw 3 other drs that told me I had migraine's and the meds they were giving me were making me very sic...

I'm currently working niTe crew for my company and don't get home till about 10am after working for 13 or so hrs...I am getting constant headaches trying to sleep though the day and think I will skip sleeping today and just getting ready to go back to work, I have slept less then 6 hrs over the last three days but I refuse to give in as my son relies on me and being strong for him is my ultimate goal in life.....

again it means the world that you guys have cared to respond and gives me a direction to move in with the information I didn't have.....I hope everyone here is doing well and I would like to get to know you all also thank you for your time

Virgina, Bejeeber...Lance..Joe and Bob thank you for you wonderful replies It makes me feel not completely alone out here. I'm also here for all of you if there is anything I can do or you would just like to talk as well, I'm also good at listening......

Jules

taking it one day at a time ;)

I think one of the main things I have noticed from all my reading of everyones posts is that we all seem to be echoing the same sentence...."its great not to be alone", if only we could all go en masse to the dr then maybe collectively they could retrieve their heads from their butts....but thats just my humble opinion....I wish....I wish....that I never had to take another pain med ever again....but unfortunately sometimes you just break down and have no choice even though oftentimes it doesnt do a bit of good.....

I am also quite sure that every single one of us, as my hubby puts it, has sucked up the pain, or tried to, and done their best to hide the fact that it feels as if someone is using a drill on their temple or eye and trying to do brain surgery.....