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.   

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.
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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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Also print out this message and give to him.


Link to: cluster-LIKE headache.

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

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.

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.
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For your learning----




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]

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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:

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

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

Thanks for the pdf Bob. I have it in my hand and will take it with me to the doc.

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.

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.

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

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.

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.

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

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....

Go to the machine shop.  They got Oxygen I promise you.

         Potter

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.

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

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.

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

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.

That's GREAT news, on both fronts.

Joe

:'( 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.

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?

Never mind. Had a pretty good one today, around noon. Kept me down for an hour, still having shadows from it.  >:(

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

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?

Well, calling everyone in my medical history helped somewhat. I have an appointment with a neuro this Wed at 0900 hours. Not the neuro I wanted to see, but still. I'll give anyone a first chance.

Prepare for your appointment. Write down what you want to ask (so easy to miss a few bits and then kick yourself for not remembering later).

Have supporting material, e.g. info about oxygen, but don't overload someone.

And I hope you get a sucessful outcome.

Saw the neuro today. After a thorough exam and 100 questions, he told me I had all the symptoms of CH, but due to my prior health issues (leukemia) he wanted to be certain before he prescribed me any prophylaxis medicine. So now i have a CT scan, blood panel, and trip to the opthamologist scheduled. Meantime, he wrote a script for Treximet, and told me if it didn't help, he would script O2. Gave me two trial pills of the Treximet. Got hit about an hour ago at work, so I took one of the pills. Now my head hurts, but I feel groggy and my neck is bunching up? Anyone have anything good to say about Treximet? Should it work immediately, or not?

I think that you should try the oxygen before pharma drugs! I have tried several and the oxygen works quickly and with no side effects. A cluster cycle with a quick abort plan that works is tiring enough with out all the side effects that you can get from drugs! If you start a treatment within a few minutes of the early signs then you can abort the headache in 10 to 15 minutes and not feel the "hangover" of the medicine. Best wishes that the oxygen will work for you!!! :)

Quote:

TREXIMET contains sumatriptan (as the succinate), a selective 5-hydroxytryptamine1 (5-HT1) receptor subtype agonist, and naproxen sodium, a member of the arylacetic acid group of nonsteroidal anti-inflammatory drugs (NSAIDs).

Since this is a pill form used primarily for migraines, its effects for us are way too slow. If you're getting some relief then why not go right to the imitrex injections? Especially read the imitrex tip at the left. You can take one 6 mg autoinjector and turn it into 3 doses. And it works fast! Having said that, the best abortive is O2 at high flow rates starting at 15lpm but 25+lpm is even better coupled with a good non-rebreather mask. Keep posting and let us know how you make out. Blessings. lance

I get it that O2 would (will) be better. And that injections would be better than the pill form. What I want to know is if anyone has taken Treximet, and if they encountered any ill effects (nauseau, groggy, neck muscles bunching up, etc).  :)

Called the doc's office, told the nurse Treximet makes me sick, takes forever, doesn't help that much. Asked her to talk to the doc about O2. She called back, doc prescribed Zomig nasal spray. Same thing as Treximet, can only take four doses a week. Said try the nasal spray and if it doesn't work, at my next appt (09/28) doc will discuss referring me to a pulmonary doctor who can prescribe O2, as he cannot (?). Anyone ever ran into this before? A neuro who cannot prescribe O2?

They can...some won't....you found one that won't...

Yup... wrong neurologist. I don't know what your financial situation is... but O2 and equipment is relatively cheap, and I would spend my last red cent to get to it... it works that well. You can get a regulator at Amazom for around $35, the O2ptimask is on this site for $27.50, and fills are under $30.
Be aware there are two different valve styles on tanks and must match the regulator, the 870 is for small tanks (D,E) and the 540 is for the larger tanks (H,K) and welding O2. So for around $60, and the help of an EMT or Welder friend, you could know now what kind of help it will give.
Side effects of the triptans (the two meds your neuro gave you) can be tough for some people. O2 is a breeze.
Of course it would be better to get hooked up by your EMT friend to be sure... before spending the money... but if things get too complicated it might just be worth throwing some money at it. 3 weeks is a long time to wait with this kind of pain.

All good things come to those who wait...? Had a doc appt today, told him the zomig had no effect on my headaches, and the Treximet did somewhat, but gave me really bad side effects. Today he prescribed O2, without going thru the pulmonary doc, and Verapamil. He also prescribed a painkiller, which I don't plan on filling or using. Went to the Patient Supply pharmacy, they loaded two E tanks in my car, and a oxygen concentrator, some hoses with cannula attached. I told them I didn't think the concentrator would do me any good, nor would the cannula. I pointed out the prescription said 100% O2, but they ignored me. The prescription the doc wrote said 10 LPM, but the regulator I got with the E tanks goes to 15, so that's a plus. I ordered the Optimask on here just a minute ago. I have read the instructions on this site on how to use the cannula until a proper mask is in my possession. Hopefully I'm finally on the right track.

I got a look at the bill from the Patient Supply pharmacy. No wonder they insisted I have the O2 concentrator. They get $450 a month for it, and $75 a month for the E tanks.

Hope it works for you!  :)

Wow, that's great news! And I am so impressed with how knowledgable you were about what you wanted. Did they only give you canulas? They didn't give you a rebreather? Anyway, you ordered the opitmask. You're gonna love it. Now to get the breathing routine down. It will take some practice but remember, you're looking for that "tingling" feeling that will come with hyperventilation. It's your friend. Crank up to 15lpm and if you find it helps, you might consider getting a regulator on ebay or somewhere that goes up to 25lpm. At that rate you'll be draining down the e-tanks pretty quickly. So you could begin considering a larger M or J tank. Best of luck, and here's prayers for pf day! Blessings. lance