Hi to all! I have just recently joined the ranks of cluster headache sufferers at age 53. My 1st attack came out of nowhere this past December. Along with it came horner's syndrome and Trigeminal nerve damage.  For the next 5 weeks I underwent a battery of diagnostic testing (2 MRI/MRA with contrast of my head /spine), chest x ray, CAT scan, ultrasound, multiple blood work ups looking for Lyme disease, syphilis, etc. Saw an opthamologist and a neurological opthamologist specialist who finally gave me the diagnosis, horner's syndrome brought on by Cluster Headache's. I was treated for Shingles during week 1, and later for hemicrania continua, which normally responds to RX: Indomethacin. I have also tried anti-seizure meds and could not function at work or drive because of the side affects. Prednisone did seem to help get the severe attacks under control, however 10 days later my blood pressure shot up dangerously high and now I"m on 2 different meds for Hypertension.  :'( . My life has been interrupted, put on hold, and no where to turn for help. How can you treat something without a known cause? I have avoided "all" the known triggers like the plague and still have symptoms everyday. It's been so difficult to cope and accept that this is going to be a part of my life from now on. Wow! I've always been the strong one, the caregiver, the survivor. Now, I'm an emotional mess living in fear. I've lost my sense of humor, my patience and my joy for life. To be perfectly honest and frank, this totally SUCKS!  Thanks for listening.
Donna Mae 

Hang in there.Its tough.Make sure you get some oxygen.Cheap and it works.Redbull beleive it or not does the trick for me as well.I also have imatrex injection shots on standby.I will not be let down.

#1 avoid alcohol.That was the worst for me.what a receipe for disaster

donna mae wrote on Feb 28^th, 2010 at 1:57pm:

How can you treat something without a known cause?

For starters you might wanna pay close attention to some of those nuggets Chad just supplied. He's catching on quick!  :)

So we've seen what doing exactly what the doctors tell you has done for you. Now's a good time to time to take the 'ol beast by the horns yourself - info and advice found here can really help people find some real relief. It sure has for me.

BTW,  don't just simply get some oxygen and administer it in the dumb old arcane way that almost ALL doctors still prescribe. Get yourself a non rebreather mask at least, and if maxing the liter flow with the regulator your med supply place provides doesn't provide enough relief, getting a hi flow regulator would be worth pursuing. Check out the oxygen info link to the left of this page for the latest, critical info on this subject.

And don't take a sit back and wait for the beast to attack you approach, like Jeeber says, grab him by the horns! I use a 2 pronged approach, it's kept me (relatively) sane for the last 31 years.

1: A good preventative medication. A med you take daily to reduce the number and the intensity of your attacks. I use lithium, Verapamil is a great first line prevent. A side benefit for you is that verapamil also controls high blood pressure! Topomax is another popular prevent. Some end up having to use Lithium and Verapamil together to get relief. I know it's hard to do but you do need to be patient when trying out the new prevents, most take 10 days to really kick in.

2: An abortive strategy, a headache is starting, now what? Your first line abortive should be oxygen. Read the oxygen info link on the left as it must be used correctly or it's worthless. The critical points, oxygen, at a high flow rate, and a Non Re Breather Mask. I can abort an attack in less then 10 minutes using oxygen.

Imitrex injectables and nasal sprays are popular, the pill form generally doesn't work for most CH'ers as CH builds too fast for an oral med to work.

For now, buy a couple energy drinks. Rock star, Monster etc., any containing the combo of caffeine and Taurine. Many can abort or at least really reduce an attack by chugging one of these at the first sign of an attack.

That's an earful to get you started. This is a relatively rare affliction requiring YOU to do the research and partner with your doc to get relief. We'll do all we can to help you.

Joe

I dont know but I wonder if some of those meds are actually the cause of some of your symptoms.
  Also horners syndrome sounds a lot like the eye droop and tearing, that we all get from Clusterheadaches . hmmmm
       Oxygen is your best bet for sure.

Just want to say thanks to all who offered me advice and support. I have some other questions I'm going to throw out to ya'll. The eye droop, tearing and miosis (undilation of pupil) I know is horner's syndrome, for me, I'm afraid is a permanent feature now. Is that a common trait with all of us CH's. I also seem to have permanent nerve pain that starts above my eye and follows a path to the top of my head, the pain level changes and seems to move around but never goes away. I have also have mild to moderate headaches everyday, they come and go, usually worse in the evening and seem to last longest then. This is week 11 since my first severe attack. I had 4 more severe attacks 1 week later for 4 consecutive nights. I'm unsure if I'm still in a cluster period. I'm not taking meds right now. Trying to maintain without.

Donna, I PM'd you and if you are indeed from my area, I know of a great supplier of O2 so you can continue that med-free route.

Our collective experience confirms medical literature reports about the poor quality of diagnosis/treatment of Cluster. The issue is that very few docs, including neurologists, receive decent education in headache and have even less skill/experience. That being said, finding a headache SPECIALIST is the best single action you can take. There many dozens of types of headache and multiple disorders appear to be Cluster H but the issue is NOT Cluster. So, good diagnosis is critical.
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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.  Call 1-800-643-5552; 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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The second route to success--again our collective experience speaking--is to know as much as YOU can about Cluster & its treatment. Many of us, not having access to a specialist, have been blessed with having a receptive doc who will receive MEDICAL material on Cluster which we give them. By educating them, they become able to more effectively treat us.
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This article would be good both for you to read and to give to your doc. Ditto for one or both of the books which follow.
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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]
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The first book is written by one of the better headache docs in the U.S. for other M.D.s But a sharp layperson can digest it.
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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.
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For a brief overview, also suitable to give to your doc, see the PDF file below.
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As you have time, explore the buttons (left) starting with the OUCH site and the multiple internal links you will find there.
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Finally, (not expecting THIS much, huh?) start to develop patience and persistence in coping. Cluster is a frustrating disorder and it can take control over you life if you don't have some good survival skills!

And, of course, stay in touch. Benefit from others experience and share yours as it emerges.....

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Thanks Bob, The info you put out was much appreciated. I actually have already done lots of homework since I first knew something was very wrong. I had to wait 5 weeks to see the neuro opthamologist specialist (BOSTON) who gave me the CH diagnosis. Prior to that, CH was probable.  I've researched all the sites I could find on CH and horner's syndrome. I know what it is and sort of understand what causes the pain.  Finding this site has been a Godsend. My PC doc has actually been very supportive and has consulted with a coleague neuro on my treatment. He is very young and so far has been very willing and eager to learn all he can about this illness with me. (I think I'm his first CH) Should that change I'm certain I can and will find a headache specialist with his help.
      I was curious to know if any of you also have the horner's syndrome (eye droop, tearing) and the nerve pain?
It seems to be a permanent feature for me. I also have mild to moderate headaches everyday. They come and go but still an annoyance and a constant reminder.  :(  Good thing is I"ve stopped crying. Time to take the bull by the horns, right!  Thanks again.  :)
Donna Mae

My wife will sometimes tell me an attack is coming before I know, because my eyebrow and eye on the affected side gets all droopy and lazy! My nose runs on that side and my eye will often get all bloodshot. Mine disappears as the attack leaves, others on the board have said theirs stays droopy during their whole cycle.

I'll get minor CH attacks many refer to as "shadows" while I'm on cycle. All the characteristics of a full blown CH attack, droopy eye etc., but the attack just never takes off. I've had some success with an energy drink and on occassion using excederin migrain. But as I've said before use the OTC's sparingly as they can end up causing you more problems.

Joe

donna mae wrote on Mar 1^st, 2010 at 4:47pm:

Thanks Bob, The info you put out was much appreciated. I actually have already done lots of homework since I first knew something was very wrong. I had to wait 5 weeks to see the neuro opthamologist specialist (BOSTON) who gave me the CH diagnosis. Prior to that, CH was probable.  I've researched all the sites I could find on CH and horner's syndrome. I know what it is and sort of understand what causes the pain.  Finding this site has been a Godsend. My PC doc has actually been very supportive and has consulted with a coleague neuro on my treatment. He is very young and so far has been very willing and eager to learn all he can about this illness with me. (I think I'm his first CH) Should that change I'm certain I can and will find a headache specialist with his help.       I was curious to know if any of you also have the horner's syndrome (eye droop, tearing) and the nerve pain? It seems to be a permanent feature for me. I also have mild to moderate headaches everyday. They come and go but still an annoyance and a constant reminder.  :(  Good thing is I"ve stopped crying. Time to take the bull by the horns, right!  Thanks again.  :) Donna Mae

Thats Great Donna.  Any time a doc will work with ya , and least of all admit that he don't know ALL, is a good thing.   Sounds like he will learn from you as well as you from him.  I had a young ER doc go into the other room,,,consult a book, and come back and tell me to quit smoking! !!!
  Hang in there, you'll sort it all out in time.   :)

Thanks again for all your support and advice. It has been so much appreciated you can't even imagine. Just knowing I'm not the only one with this horrible infliction and having a place to vent has made a huge difference for me emotionally. I always thought I was pretty tough... this thing made me feel like I was just a big baby. Ugh!
     Funny you should mention the "smoking" thing the ER doc said to you, because my Doc said the same thing to me last visit. Quit smoking! Do they really think it's what causes this? Seems rediculious since I've been a 1 pk. a day smoker for the last 25 yrs. He also gave me sample of Treximet(sumatriptan and naproxen sodium) 85mg/500mg. Told me it could give me chest pain. Hum, I thought that will definetely bring on a panick attack! I haven't taken it, still trying to maintain without anything. I'm still having daily headaches off and on, still have droopy eye and tearing and still have nerve pain in my head that never goes away but it's bearable for sure. What I'm not sure about is if I'm still in cycle, this is my first one so I have no history. I have also been keeping a daily journal. Have also started taking Vitamins, lots of them. daily multiple, Fish Oil, Vet D, and today got come calcium after reading about it.
     I go back to see him (my Doc) in a few weeks and want to arm myself with as much info as I can. Any suggestions on what would be most vital to share with him? Anything I could print out and drop off a few days before was a great suggestion? Keep them coming! ;)
Donna Mae

donna mae wrote on Mar 3^rd, 2010 at 6:55pm:

Funny you should mention the "smoking" thing the ER doc said to you, because my Doc said the same thing to me last visit. Quit smoking! Do they really think it's what causes this? Seems rediculious since I've been a 1 pk. a day smoker for the last 25 yrs.

Quit if you want to, but I doubt it'll help your CH. Quitting after 30 years didn't help mine at all.


Quote:

He also gave me sample of Treximet(sumatriptan and naproxen sodium) 85mg/500mg. Told me it could give me chest pain.

Tablets? They are too slow to enter your system to help......you need an injection or nasal spray.

   Do you mean Imitrex? I'd like to try it. Does the nasal spray work as well as injections? (not crazy about needles) And what are the side affects?

Racer1_NC does mean Imitrex.  8-)

The nasal spray works as well as injections for some, but not all CH people.

The thing about the injections is that you can take 1/3 to 1/2 doses with them a la the imitrex tip link on the left of the page here, which sure helps cut down on expense and side effects. They're still dang expensive though, and around here it's generally considered best to use O2 as your first line abortive, then resort to Imitrex if the O2 fails or can't be accessed.

Some folks feel chest tightness, etc. from Imitrex. I've never felt anything from it but the pain going completely away. :)

Hi Donna Mae, I am a newbie to the site, but have had CH for 20 years. I find that for me my shadow headaches last for the whole time in between the big bang CH!! This sounds like what you are explaining as the pain in eye to the top of  your head. Mine is from my eye down to my jaw, can feel like an electrical shock periodically. Also my eye droop lasts through my whole cycle, so my husband tells me (If it is a bad cycle).
I think Lorac is Right On.

Hello my friends, Finally making progress. Spent last 3 weeks or so sorting this all out, coming up with a plan, thanks to all of your tips and advice, I know now what I NEED TO DO. I Printed out alot of the info oxygen therepy and recommended treatment meds(thanks Batch), along with a short letter to explain, dropped it off at my PC Doc last Mon(as suggested). 2 days later, I got my referral to the neuro I had asked for(April 7). Saw my PC yesterday for blood pressure check, it's good. Doc was totally receptive to help me, he "thanked" me for giving him that info. I told him what I needed for meds (showed him the list) and he gave me a script for Sumatriptan. He also said he would try to get my app w/ neuro pushed up. WOW! I'm on cloud 9. Sure feels good to finally be making progress here. Still in cycle, 3 mo now. Yesterday was a good day! :) Thank You All who helped me. Thank You for this site and the incredible support system it has. I wouldn't have known what to do without it.

Donna Mae :D

That's great news Donna Mae - was your PC at all receptive to prescribing the oxygen too? That's the help you need now, before that April 7 appt with Neuro. Hope you can call him back and ask for that. The happiest day is when the Apria truck shows up with your tanks and you find that there is immediate relief with no grogginess and other side affects!

Hi Donna Mae,

Are you in MA? I am as well. I am suffering a nasty cycle as well. I didn't have them for 9 yrs and now they're back. I have imitrex shots (but l'm out of them, insurance will only cover 5 refills in 30 days), oxygen (I have to pay for myself at $25 a tank which lasts a few days so that's empty) as abortives, and on verapamil as a preventative (although its not working yet if ever). I use ice on my head and jaw and drink tons of water which has helped. Over the weekend I had a 16 hour level 9-10 attack tht I thought would kill me. the following night 6 hours. Last night 3 hours. So perhaps they are settling down. It's just awful. I'm going to go buy some red bull tonight as I just learned of this as well. I've been perusing through this site all day to get some tips. It's been very helpful. Thought I'd say hello to everyone as this has sadly taken over my life.  :'(

Oh I also tried Indomethacin and Prednisone to no avail. I am going to go to the dentist next week to have my teeth checked (I heard toothaches can be underlying issues) and the chiropractor as last time I went (9 yrs ago) and the cycle ended...

Just happy to find some folks who understand what I'm going through. My mom used to get them and my aunt does too. My fiancee is vey supportive but he does not understand the pain we endure...

Hi Jenny, Yes I am in MA. I just PM'd you. Sorry to hear it came back with such vengeance. I also tried Indomethacin, did nothing, and was on a 10 day pred dose that I think stopped my severe attacks but still have daily headache (shadows) and nerve pain and eye droop, 3 mo. Also have had some luck taking Melatonin 9mg before bed to help with sleep. Keep reading as much as you can. This site is incredible with very knowledgable vets. Keep asking questions- they will respond. It's like a family here, home away from home for me these days.
Keep in touch
Donna Mae