During my third ch last night, I knew there had to be a support group somewhere! Thank you Lord!!

My name is Debbi, yes, a female, who is blessed (NOT!) with this cursed disease. My Father had chs right up till the day he died in 2009. Nothing seemed to work, not oxygen, RXs, nada. I am 57, and have been having these for about 11 years now. I am episodic, usually starting for a month in Sept., then free of them till late Dec.-Jan.

The first one I ever had scared me to death! I would've sworn my left eye was bleeding it was tearing so hard. Mine start on the left side of my nose, run up into my left eyebrow, and then sit behind my left eye. I can only imagine it feels like someone trying to poke my eye out from the inside!! I had a period of years that none occured, wish I could replay those years! Now, in the last three years, they have come back with a vengenance. Last night was the WORST night I have ever had. I had 3 CHs last night, and this morning I look like I was on the losing end of a fist fight! Eye is still swollen, red marks all over my forehead from constant rubbing/pressure, and my eye still hurts. I have no luck with docs, in fact, I hate docs. The medical community has not been good to me for my whole life. I went undiagnosed and untreated with hypothyroidism for over 30 years. Typical response from docs was, "just push yourself away from the table sooner". Thyroid disease is very much like CH, people including docs, don't get it! I've already been told that "women don't get cluster headaches, take some aspirin". WTF???  I finally had to self treat my thyroid disease, with success I might add, and figure it'll be the same for CHs.

Reading through some of this board, I noticed the caffine idea, and may have to try that one. For me so far, the only relief is: 1) Light up a cigarette! Yes, I know, bad me, but it does ease the pain, and slows down the progression, blow nose.  2) Drink ice cold water and hold it to the roof of my mouth, ice cubes help too.  3) Ice cold washcloth on the eye area and forehead.

This trio last night did not respond well at all, with the second CH lasting about 2 hours. I knew too, as soon as I did go back to sleep it would come again, and it did, lasting another 2 hours. The first one was more typical (for me) only lasting about 40 minutes. I can already tell, the beast will be returning tonight, and I am dreading bedtime. Probably got 3 hours of intermittent sleep last night, and feel like hell today.

Anyway, thanks for letting me vent, and I hope to gain some new "tricks" to help ease the pain. I realize these will probably continue for life, but it would sure be nice if they were shortened and a tad (or bunch!) less painful. Thanks again,

Debbi

Stick around and check the oxygen links in the tabs to the left.

                     Potter

Thanks Potter!  The O2 idea scares me. I heat my home with a wood stove, and am a smoker. Probably not a good combo?

Debbi wrote on Jan 8^th, 2011 at 11:30am:

Thanks Potter!  The O2 idea scares me. I heat my home with a wood stove, and am a smoker. Probably not a good combo?

     I smoke and heat with and cook with wood.  It's not a problem unless you are smoking and sitting inside your stove at the same time.

                   Potter

No, not a good idea. Smoke outside before, during and after using O2. And don't use it when your wood stove is going. Take the O2 outside. The cold will feel good when you're getting hit.

To avoid just making random suggestions, it would be helpful if you would give us a brief history of how your CH has been treated, what type of docs have you seen (a headache specialist in the lot?), the meds doses/duration of meds tried, etc.

In the last 10-yrs or so, we have seen a limited # of articles on "cluster-LIKE" disorders, some of which are quite serious. They present with cluster symptoms (hence, masking the real problem) which usually don't respond to the usual Cluster treatments--this being a major clue that you need a more extensive work-up. (In the section here on medications--treatments, look under the sub-section, "important articles", for "Cluster-LIKE headache" for a collection of these reports.)

Would suggest you explore your options on finding a doc with real training/experience with headache.
----
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.
===
Your age at onset of the Clusters is not old in general medical terms but rather above the "normal" starting point. This reinforces, for me, my suggestion that you consider a more extensive diagnostic work-up (in keeping with the articles noted.)

Bob,  Thank you for the links. I may have to cave and find a doc, although out here they are very limited and the quality stinks. Would have to travel about 300 miles round trip, which really isn't doable for me. That said, with last night's hits, if someone told me inhaling the contents of a litterbox would work, I probably would've tried it! I will try the doc finder. Hope it's more reliable than the one for docs that treat thyroid disease, they can post themselves on the lists, and two of them that were listed were two I had gone to that were totally worthless! I have never been diagnosed, but my Dad was, and went to numerous specialists over the 40 year period, and went through many a treatment, none of which seemed too help much. He started his CHs about five years earlier than me, I think he was in his early 40s.  He did say the O2 helped some, but never got rid of the hits totally. He may have started the O2 too late into the episode, I don't know. My finances aren't great either, and with no insurance, that will be a problem for me.

Brew,  You are so right about the cold feeling good! I stood outside for about 15 minutes at 3:30am just breathing in the 15* air! It did seem to help a bit.

Self diagnosis isn't a good thing.

         Potter

I realize that, but with the docs out here doing research on my own has proved better, and cheaper than having them throw a pill at me, or telling me it's all in my mind, and then handing me some outrageous bill. The last two docs I dealt with back in 2003, told me I had pancreatic cancer and walked out of the room! After they took the wrong angle shots with a CT scan for 800 bucks, they then decided to do an ultrasound, 75 bucks. Turns out, my gall bladder was about to explode! Told me it sure looked like pancreatic cancer because I didn't complain of the pain?? Yeh, so not too much faith in docs any more..

Debbi,

You say you'd have to travel about 300 miles to see a doctor.  Where do you live?  There are 1000's of us all over the U.S.  and more than a few times I've been able to hook up people in their area to help with getting a good doctor. 

While your symptoms sound a lot like CH, there ARE other things that can mimic it, being correctly dianosed is imperative.   

Linda,

  That would be 300 mile round trip. I have degenerative arthritis in my hips and knees, so long drives are really painful. I did use the "Physician Finder" link that Bob passed on, and there are 3 certified docs about 120 miles from me. I live in south-central MO., most of the docs are in the bigger cities like KC, St. Louis, Springfield, Columbia, all of which are 120 miles or better one way. I was just reading the Kip Scale, and last night was a definate 9, usual attacks I would rate an 8. I am still having what I think you guys refer to as a "shadow"? Mild gnawing pain on my left temple and eye area today. I can see this will come again tonight. Think I'll go to town and buy some Red Bull, sure can't hurt at this point, or at least can't hurt any more?

Some basic info:

1. Explore buttons, left, starting with the OUCH site.

2. 


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]

3. MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

(Get the one you can afford. He also has a good web site.)

4.
A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

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Debbi,

There are several people here in St. Louis who have great doctors there.  I understand the problem with your arthritis...but it might be worth it to see a doctor there.  Get a concrete diagnosis and start a treatment program.  It isn't like you'd have to drive to St. Louis often.  Maybe once or twice a year.

I'll contact Beth and Jeannie & tell them to contact you.

Thanks again Bob, I have those sites bookmarked for when I am not so tired. Funny that the one thing that seems to help ease the pain, cigarette smoke, is a major trigger. The CH for me, seem to hit at about 1:30am like clockwork. I could almost bet on the time without looking. The worst I ever had was two in one night, but last night it was three. I will wake immediately upon feeling the first sign of the nasal burn/twinge, even out of a dead sleep. Sometimes it's hard to get moving right away, but if I don't, I really regret it. The faster I get up, blow my nose, light a cig, drink some ice water, blow my nose again, walk around or sit in computer chair, rub temples and forehead over eye, drink more water, get cold washcloth, walk some more, blow nose again, put out cig, by that time the ch is on the downhill side...usually. Last night the second and third seemed to hang on forever! Got some Red Bull and another like type of drink for tonight, we'll see if that helps any. I am not prone to headaches of any other type. I rarely get sick. With my thyroid disease, I was curious about the suspected link somehow to the hypothalmus and ch. Hopefully, this round of hits will be over by the end of the month, that's the way it usually goes. Then they resume again in Sept. for a couple of weeks. The fall hits are nowhere near as bad as the winter. I also wondered if the wood heat could also be some kind of trigger?? I don't like it hot when I sleep, so keep the house about 60-62* at night. Look forward to learning more about this, thanks for your input, it is appreciated!

Linda_Howell wrote on Jan 8^th, 2011 at 3:29pm:

Debbi, There are several people here in St. Louis who have great doctors there.  I understand the problem with your arthritis...but it might be worth it to see a doctor there.  Get a concrete diagnosis and start a treatment program.  It isn't like you'd have to drive to St. Louis often.  Maybe once or twice a year. I'll contact Beth and Jeannie & tell them to contact you.

Thank you Linda! I don't mean to sound picky, but is there anyone that knows of a good doc or clinic in Springfield?  I would almost rather get hit by a bus than to travel to St. Louis! Small town country girl here, and I HATE that city! LOL. Even Columbia or Jefferson City would be preferable to St. Louis. Thanks!

Has anyone ever dealt with this clinic or doctor?

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Debbi wrote on Jan 8^th, 2011 at 7:57pm:

Linda_Howell wrote on Jan 8th, 2011 at 3:29pm: Debbi, There are several people here in St. Louis who have great doctors there.  I understand the problem with your arthritis...but it might be worth it to see a doctor there.  Get a concrete diagnosis and start a treatment program.  It isn't like you'd have to drive to St. Louis often.  Maybe once or twice a year. I'll contact Beth and Jeannie & tell them to contact you. Thank you Linda! I don't mean to sound picky, but is there anyone that knows of a good doc or clinic in Springfield?  I would almost rather get hit by a bus than to travel to St. Louis! Small town country girl here, and I HATE that city! LOL. Even Columbia or Jefferson City would be preferable to St. Louis. Thanks!

  If you got farmers close then they got an oxygen tank and regulator.  Go on the bum.

        Potter

???? What does that mean? I don't know of any farmers on O2 out here. If you meant oxy/acetylene type of O2, they've all gone to Arc welders! LOL

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Hi Debbi,

This is the link to the Ryan Headache Clinic.

I see Dr. James Banks but any of the doctors there can help you.   Get in touch with them and tell them that you are a CH patient.  They will get you in quickly.   

If there is any way I can help you, please let me know!

Jeannie

Since your getting hit at night, do look into mleatonin, an over the counter sleep aid available at vitamin and health food stores, I've heard even wal mart carries it. Start with 9 mg 30 minutes before bed time. Many can avoid the night time hits with it.

Joe

Second and third the melatonin.  I take it every night (3mg) and up it to 12 or 15 when in cycle.  It helps, and I feel that taking it out-of-cycle makes it a little easier next cycle.

Hi Debbi,

Give the Ryan Headache Clinic a call (the link Jeannie put up) they may be able to refer you to someone in the Springfield/Columbia area.  They are the only doctors I've been to that have a clue about ch.

Beth

Debbi wrote on Jan 8^th, 2011 at 8:12pm:

???? What does that mean? I don't know of any farmers on O2 out here. If you meant oxy/acetylene type of O2, they've all gone to Arc welders! LOL

   Instead of just saying no make a little effort.  That tank is out there.

               Potter

Potter, I don't think she's saying she can't find one but that she has reservations about safety and it didn't work very well for her father with his CH.

I second the recomendation to keep the tank outside if you're concerned, but then I'm in Texas, it doesn't ever get REALLY cold here, I'll call my welding O2 supply guy and ask about minimum safe tank temps. Or keep it in a garage, outbuilding, chained to a tree 100 yards from the house- whatever makes you comfortable!haha  As for the O2 not working for your father- the techniques have changed radically in the past few years- I highly recomend you give it a shot, it made an amazing difference for my husband. My husband uses a welding regulator, welding O2 tank, and the Optimask from the site here (though originally I got him a cheap $2 mask from a medical supply place)- no need to wait and fight a doctor for a prescription- I took it into my own hands and got him set up- took me 4 hours and had it ready before his next headache.

Lauren17 wrote on Jan 11^th, 2011 at 1:38pm:

As for the O2 not working for your father- the techniques have changed radically in the past few years ......

Lauren makes a critically important point here - oxygen didn't work for me a couple decades ago either, because it was prescribed in an ineffective way, but now with high LPM 100% O2 it does work well.

Debbi,

I have seen Dr Cady.  He works at a Headache Clinic in Springfield.  I would suggest you see a doctor there (Dexter i the one I like better). Any other questions, I live in the Springfield area.

Thank you Eric and Beth.   ;) ;)