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Friday

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New From Kansas
Sep 7^th, 2011 at 2:39pm

Hello, everyone. Last month (August) I woke up one night (around 1 am) with what I thought was a head injury. I realized eventualy it was a headache, but worse than any I have had in my life. I seldom get headaches, can usually count on one hand the number of times I take pain relievers in a year. The pain was in my left temple, behind the left eye and left sinus area. It lasted 30-45 minutes and slowly went away. A week later, I had another one, this time around 3:30-04:00 am. Same thing, horrible pain, same area. Didn't have another one until last Friday, but this time it came in the afternoon, around 3:30. Then another one early Sunday morning, again early Monday morning (1:30 - 02:00). I had a mild attack Monday afternoon. Then last night, I woke up with one at the usual time, around 1 am. Same horrific pain and lasted 30-45 minutes. My left nostril will burn like I'm coming down with a head cold, and I get mildly congested, my saliva gets really thick. I have an appointment to see my GP tomorrow. Do any of you have any suggestions on what to tell him? I need some sleep! Oh, and for additional information, I was diagnosed with Chronic Lymphcytic Leukemia 6 years ago, and sent through 6 months of chemotherapy for it, starting last fall in October and finishing in March. The chemo was a success, except it left my platelet count diminshed and it is slowly coming back. I went through two bone marrow biopsies during that 6 months and they were a walk in the park compared to this head pain.

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Bob Johnson

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Re: New From Kansas
Reply #1 - Sep 7^th, 2011 at 4:00pm

When you have complex medical history it would be unwise/unethical of us to try and diagnose. Headaches can mimic or mask other problems.

Clearly, you tell your doc what you have written here. IF he wants to refer you for an evaluation about the headaches, ask him to use a headache specialist. Many doc have very little training/experience in this area.
---
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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; On-line screen to find a physician.

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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.

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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.
=====
Also print out this message and give to him.

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

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Friday

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Re: New From Kansas
Reply #2 - Sep 7^th, 2011 at 9:49pm

Thanks for the info, Bob. If I can't get a good referral through my GP, I can go through my oncologist, who is very understanding about this kind of thing. There are two neurologists in the same group as my GP who specialize in headaches, so I'm hopeful I'll land in good hands. Plus, since my chemotherapy already maxed out my out-of-pocket limit, I can get any treatment/meds at no cost till the end of the year.

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Bob Johnson

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Re: New From Kansas
Reply #3 - Sep 8^th, 2011 at 6:07am

Has the makings of a smooth transition to the right doc!

PDF file, below. Latest evaluations of meds for Cluster. Print it out and use as a discussion tool with the headache doc.
===
For your learning----

Cluster headache.
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(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]

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Bob Johnson

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Guiseppi

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Re: New From Kansas
Reply #4 - Sep 8^th, 2011 at 9:16am

Bob's given you some great advice, especially about working with a specalist. For now, go buy a four pack of energy drinks, I prefer sugar free red bull but any which contain the combo of caffiene and taurine will work. When you feel an attack coming on, chug it down as fast a you can. Many can abort or really reduce an attack that way. In a pinch, strong coffee helps, but combining that taurine with the caffiene really seems to speed the abort.

Avoid alcohol, a very common trigger for CH'ers when on cycle. If you smoke weed, only asking because many use that for the side effects of chemo, avoid it while on cycle, a vaso consrictor, it will really increase a CH hit.

Read this link:

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If they diagnose you with CH, insist on oxygen as your first line abortive. I abort my attacks in 6-8 minutes using oxygen, I swear it's almost miraculous how fast the pain disappears.

Good luck on your diagnostic journey, I'll repeat what Bob said, it's critical to eliminate all the more sinister stuff before arriving at a CH diagnosis. If it is CH, PLEASE don't lose this website.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Friday CH.com Newbie Offline Dong le ma? Posts: 19 Topeka, KS	Re: New From Kansas Reply #5 - Sep 8^th, 2011 at 10:19am Thanks for the pdf Bob. I have it in my hand and will take it with me to the doc.
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Friday

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Re: New From Kansas
Reply #6 - Sep 8^th, 2011 at 10:26am

Guiseppi wrote on Sep 8^th, 2011 at 9:16am:

Bob's given you some great advice, especially about working with a specalist. For now, go buy a four pack of energy drinks, I prefer sugar free red bull but any which contain the combo of caffiene and taurine will work. When you feel an attack coming on, chug it down as fast a you can. Many can abort or really reduce an attack that way. In a pinch, strong coffee helps, but combining that taurine with the caffiene really seems to speed the abort.

Avoid alcohol, a very common trigger for CH'ers when on cycle. If you smoke weed, only asking because many use that for the side effects of chemo, avoid it while on cycle, a vaso consrictor, it will really increase a CH hit.

Joe: Thanks for the tips. I actually tried the Red Bull last night. I perused this site quite a bit yesterday and into the evening. Had my wife pick me up some Red Bull. Woke up at 12:45 and could feel the burning pain in my left nostril, pain starting to take off in my left temple, so I chugged a RB and I actually think it worked. It (the pain) was not near as bad as it was the night before, I actually fell back asleep. This morning when I woke up, I felt pretty crappy, the pain is still there, kind of in the background. Oh, and I don't drink alcohol at all, so that won't be a problem, and Kansas does not have a medicinal marijuana law, so I cannot partake (being a police officer makes it even harder to get away with). Thanks for the info. Should I post elsewhere now, I would like to keep folks aprised of what the docs say and get feedback.

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: New From Kansas Reply #7 - Sep 8^th, 2011 at 11:10am You can stay in this section for a few weeks. If you decide to stay with us for the long haul, your material will likely be bette suited to the medications/treatment section.
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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: New From Kansas Reply #8 - Sep 8^th, 2011 at 12:56pm Just retired last year as a patrol sergeant after 30 years! Used to keep an E-Tank in the trunk of my cruiser when I was on cycle. Be safe out there. Joe
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Friday

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Re: New From Kansas
Reply #9 - Sep 8^th, 2011 at 3:06pm

Doc turned out to be very informed on cluster headaches, and after a 15 minute exam, said that's what it looked like to him and said he was referring me to the first available neurologist. He also said to plan on getting a prescription for oxygen right away (as soon as I can get in to see the brain doc). But, that won't be for almost three weeks, that is the first opening I can get. Getting an MRI tomorrow to rule out the possibility of it being something else, but doc seemed pretty confident it was CH. I'm trying to get a call through to the neurologist office to see if they have a on-call list for cancellations, so I can get in sooner. Thanks for your help so far, and I'll keep you apprised.

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Friday CH.com Newbie Offline Dong le ma? Posts: 19 Topeka, KS	Re: New From Kansas Reply #10 - Sep 8^th, 2011 at 3:07pm Guiseppi wrote on Sep 8^th, 2011 at 12:56pm: Just retired last year as a patrol sergeant after 30 years! Used to keep an E-Tank in the trunk of my cruiser when I was on cycle. Be safe out there. Joe 31 years on the job, 5 more to go. BNSF Railway Police.
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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: New From Kansas Reply #11 - Sep 8^th, 2011 at 3:56pm Trust me, retirement rocks! As soon as you get a referral for the neuro, call his/her office and ask for a prescription for oxygen pending your appointment, based on the GP's appraisal. Might work! Joe
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Friday

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Re: New From Kansas
Reply #12 - Sep 8^th, 2011 at 11:21pm

Guiseppi wrote on Sep 8^th, 2011 at 3:56pm:

As soon as you get a referral for the neuro, call his/her office and ask for a prescription for oxygen pending your appointment, based on the GP's appraisal. Might work! Joe

That is my intention. I already have a call out to them. Meantime I had an attack at work around 2pm, and then another at 6 pm. I can't do this for three weeks. Red Bull works wonders, but still....

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: New From Kansas Reply #13 - Sep 8^th, 2011 at 11:52pm Go to the machine shop. They got Oxygen I promise you. Potter
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Jimi CH.com Moderator CH.com Alumnus Offline Don't feed the moderators Posts: 4925 Madisonville, KY Gender:	Re: New From Kansas Reply #14 - Sep 9^th, 2011 at 12:01am Welcome Friday. I, too and retired from the Kentucky State Police. What I did, and you might try, is to go by the FD or EMS and see if they would give you or loan you a couple of 02 tanks. Like Joe, I kept a tank in my cruiser and a couple at my office. The EMT's took care of me. might be worth a try.
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wimsey1

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Re: New From Kansas
Reply #15 - Sep 9^th, 2011 at 8:33am

Just a word of caution about the O2...since you're starting out on it please try and use the right equipment. Get a nonrebreather mask, or better yet, the Optimask, and investigate getting a regulator that will go at least as high as 25lpm. Some have aborted at 15lpm, I found relief at that flow rate, but truly short abort rates came at the higher flow. I also use a demand valve which really increases the flow. Too many have begun O2 at the cardiopulmonary levels and found it just isn't enough. Good luck, and God bless. lance

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Friday

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Re: New From Kansas
Reply #16 - Sep 9^th, 2011 at 11:10am

First brick wall. Nurse at the neurologist office told me today they will do nothing for me until they have "seen" me, and in no way can they get me in sooner than the 27th. I asked about an on-call list and she said they don't do that. I told her I was getting 3 attacks a day right now, and she stood her ground (silence). Have a co-worker that is a first-responder, going to talk to him or my oncologist to see if either can help with the O2.

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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: New From Kansas Reply #17 - Sep 9^th, 2011 at 11:25am Yeah, borrow an E-Tank and one of those paramedic push button valves. Talk them into swapping out fulls for empty's. You'll be amazed. Good luck. Joe
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Friday CH.com Newbie Offline Dong le ma? Posts: 19 Topeka, KS	Re: New From Kansas Reply #18 - Sep 9^th, 2011 at 1:59pm EMT buddy says he has a small tank (16-18" tall) with adjustable flow rate I can borrow over the weekend and a non rebreather mask . We're meeting up after work to do the dirty deal. Monday I'm going to look into a welding supply house.
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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: New From Kansas Reply #19 - Sep 9^th, 2011 at 2:36pm That's GREAT news, on both fronts. Joe
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Friday CH.com Newbie Offline Dong le ma? Posts: 19 Topeka, KS	Re: New From Kansas Reply #20 - Sep 9^th, 2011 at 6:46pm EMT buddy called and said his tank is empty and is going to try later to get a full one. Wish I'd known that sooner, I would have looked into a welding rig today before everyone closed for the weekend...Guess it's me and the Red Bull this weekend.
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Friday CH.com Newbie Offline Dong le ma? Posts: 19 Topeka, KS	Question on Cycles Reply #21 - Sep 11^th, 2011 at 10:00am I haven't had a real attack since Friday afternoon. Slept through the night both Friday and last night. Woke up both times with "shadows". Is it the end of a cycle or do these things come and go sometimes in mid-cycle?
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Friday CH.com Newbie Offline Dong le ma? Posts: 19 Topeka, KS	Re: New From Kansas Reply #22 - Sep 11^th, 2011 at 4:56pm Never mind. Had a pretty good one today, around noon. Kept me down for an hour, still having shadows from it.
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Linda_Howell

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Re: New From Kansas
Reply #23 - Sep 11^th, 2011 at 6:36pm

welcome Friday. Is that as in Sgt. Joe Friday? lol

You've been given good advice so far and I can't add to it except to say...

Quote:

Nurse at the neurologist office told me today they will do nothing for me until they have "seen" me, and in no way can they get me in sooner than the 27th. I asked about an on-call list and she said they don't do that. I told her I was getting 3 attacks a day right now, and she stood her ground (silence).

This woman is unconcienable and doesn't deserve to be a nurse. I hope you find someone with a smidgen of caring soon. echoing what Joe said, I can abort in less than 10 mins with 02. Medical 02 or welders, I have both. Doesn't matter. What does matter is that it works and I hope you can get it.

Linda

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Friday

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Re: New From Kansas
Reply #24 - Sep 11^th, 2011 at 10:39pm

Linda_Howell wrote on Sep 11^th, 2011 at 6:36pm:

welcome Friday. Is that as in Sgt. Joe Friday?
This woman is unconcienable and doesn't deserve to be a nurse. I hope you find someone with a smidgen of caring soon. echoing what Joe said, I can abort in less than 10 mins with 02. Medical 02 or welders, I have both. Doesn't matter. What does matter is that it works and I hope you can get it. Linda

Thanks for the words, Linda. Yes, as in Joe Friday. Tomorrow I'm calling my nurse at the oncologist office. I'm hoping that they can light a fire under Nurse Ratchett. I really want to see this neurologist, I've heard really good things about him. If all else fails, I will ask the oncology nurse if she can get me a prescription for O2. Never hurts to ask, right?

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