I am new to this site. I was diagnosed with CHs almost 3 years ago. I receive medical treatments from the Veteran Affairs clinic. When I was diagnosed there were no tests run, the doctors went purely on my description of symptoms. Ever since I was diagnosed, I have had friends, family and co-workers tell me that it could be other things, yet for some reason my doctor wont run any tests. I really would like to try an see another doctor but the VA says I have to stick with my primary care doctor. I cant afford insurance to see any other kind of doctor and I feel stuck. With all of that being said, here are my symptoms. If anything about this isn't normal please let me know.

My pain usually starts between my eyebrows but more to the left side, if not it starts anywhere between my left eye and temple. I then feel a tightening and pain in my upper neck on the left side. Then pain in the left side of my nose from the tip to the top, feels like the bone is hurting. Through all of this intense pain goes from my neck to the side of my head through and above the ears to my forehead. Also there is pain all along the top of my head on the left side. During my headaches i have nasal discharge, and watering of the eye but it differs in texture than tears and sometimes burns my eye. Also I yawn alot and get really dizzy at times where I cant walk straight.

Also I have noticed that in order to relieve the pain I have to do different things. For example, sometimes only a hot shower will work. At other times the shower makes it worse and I have to make my apartment super cold and shiver out the pain. I know that there may be alot of people who read this and say to themselves that this is all normal when it comes to CHs. Please try to understand that I have never met anyone that suffers from CHs and all my doctor can tell me is what he reads in a book or on the internet. Also another question I have is about preventative medicine. My doctor is an idiot imo, because I have low blood pressure most of the time and he tries to put me on Verapamil, which as I understand lowers blood pressure. Is there another type of prev med that I can take? I suffer from heavy depression so it has to be a med that doesn't interfere with that or my antidepressants.

Any other suggestions on how I might deal with my situation will be greatly appreciated.

We can't make a diagnosis but you can take the "cluster quiz", to left. But I'm comfortable with your doc, at this point.

Reading and learning is very important at this stage.
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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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Print out the PDF file, below, and use it to discuss treatment options with the doc (as well as educate you.)
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Explore the buttons, left, starting with the OUCH site: look over these additional sites.....


A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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Re. Verapamil. It's the gold standard for reducing/preventing Cluster. But this you discuss with him as well as your concern about drug interactions.

Verap is not an especially potent BP med and if your pressure does drop too much, there are options.

Do, however, print out this article and give to him.
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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Jman, there is no diagnostic test for CHs apart from ruling out other possible causes for the pain and then focusing on the symptoms. Bob is right about verapamil and while it is the frontline preventative, it isn't the only one. Drug interactions can be tricky so you do need to work with your doc. There are some OTC avenues you could try, again with medical advice (just because it is OTC doesn't mean it has no drug interactions) like Batch's "123 days pain free", melatonin at night, energy drinks, that kind of thing. The best thing you can do right now is read and become informed. We can't tell you what will work for you but we can spare you some pain and heartbreak by sharing the load of crap we have weeded through over the years that does no good. Check out the O2 link and seriously push your doc for the right Rx. It has been a Godsend for sp many of us. Blessings. lance

Welcome to the site, yeah, sure sounds like CH to me, but as others have mentioned, making a diagnosis with CH really involves eliminating most everything else!

Heat and cold, very common with CH'ers. Some prefer the burning hot shower on the back of the neck, some prefer ice packs, some like you move back and forth between the two.

This is the link Lance was referring to. I can abort my attacks in about 6-8 minutes just by huffing pure oxygen.

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The keys to making it work, and these are critical:

Get on it as soon as you feel the tension and tingling start. You must get 100% oxygen to your lungs, at a rate to support hyper ventilation. Best accomplished using a Non Re Breather Mask and a flow rate of at LEAST 15 LPM, preferably 25 or higher.

Talk to your doc about using lithium as a prevent. Don't let the old Hollywoood stereotypes of the mouth breathing zombie on lithium scare you! I worked as a cop for 30 years, I'd take 900-1200 mg of lithium a day while on cycle and if I didn't tell you I was on it you'd never know. If your doc is uncomfortable with monitoring the lithium.....and many GP's are....maybe that will get him off his arse to get you to a decent neuro!

For temporary relief, get some energy drinks, rock star, monster, any containing the combo of caffiene and taurine. Chug one down at the first sign of an attack. Many can abort or at least really reduce an attack this way.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

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Joe

Thank you all who have responded so far. I am finding this information, along with other info in these forums, quite useful. After reading the responses put here and some of the posts on the site, I have tried red bull to help abort. I must say I use to HATE energy drinks and the way they make me feel, but it helped me abort twice so far in half the time as it usually takes. I will gladly take the bouncing off the walls feeling over the pain of the beast. I have also begun to tried Batch's method of the omega 3s and D3, I began this morning so we will see how it goes. I will post any results I have in Batch's 123 post. I am glad to finally have a place where there are people who truly understand what I am going through as everyone I personally know have no idea.

Yeah, it gets kind of old trying to explain to people what we go thru. I've mostly given up! No one here will ever tell you to take 2 aspirin and relax. ;D

Joe

Welcome jman1980!

I have had Low Blood pressure all my life and I am currently and have been on verapamil for years.  The main reason I can't take the normal/quick release verapamil is due to my low blood pressure.  I can and do however take the Extended Release verapamil and it does help with the CH.  This might be worth a try, but discuss it with your Doc first (such as he is).

As a rule a CT scan or MRI is done of the brain to rule out tumors etc.  Your doctor should have at least run one of these on you!  If I were you I'd speak to a patient advocate regarding the treatment or lack of proper testing by your current Doc.

Your CH symptoms and what helps or doesn't help at any given time do sound quite familiar to me as I am in the same boat.  Hot cloths or showers work sometimes but not others, so I go for cold if needed.  The best thing you can do is get O2 if you don't already have it, then hot or cold won't matter unless you are without your O2. 

PF Wishes to you!

Welcome. It sounds alot like CH. Sorry to hear of your pain.

How oftern do you get them ? How often do they last ? Do they come in cycles (lasting 1 to 6 months or so) and then just one day leave on there own ?

If it is CH, you're not alone. Stick around and read as much as possible. You're right, many docs do not have experience with CH as they are pretty rare. It's best to find a neurologists as they deal with this type headache and are some of the few who do understand. If you go armed with info when you see the doc, many times they are more susceptible in giving you what you need. Good luck to you.

If you want to go a different route than Verap I would suggest you look into Kudzu.  I took myself off of Verap a few years ago just because I couldn't stand the side effects any longer for the results I was getting.  I started using Kudzu and achieved the same or better relief than I did with 780 mg Verap and I think it was 900 mg of Lithium.  DO check into drug interactions with it.  I don't know of any, but it has been a while since I really looked into it.  Here are a couple of  threads about it from the archives that might help a little if you want to consider it.
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There was another rather lengthy thread started by Nani in the Meds and Treatment section that I did not find when looking for it.  Somebody else may have it saved and can share it with you.

As with all things CH related you will have to do your own research and see what works for you.  This can take time and a lot of effort.  You will get a lot of assistance here, but in the end it will be up to you to make your own determinations as to the treatment that will work for you.  Somebody on this board has said for years that if you leave it up to the Dr to cure you you are in for a world of hurt.  (Rather loosely paraphrased)  There is a lot of truth in that.  As you have already seen in your current Dr. there is not much knowledge about CH in the medical community.  Very little time is spent in med school studying headache and CH is a VERY small subset of those suffering headache.

Jerry

do you take cafergot as a cure for when you get an actual CH?I use cafergot as a back up and it works well for me. I also take verapamil as a prventative twice daily. I get a CH once a week approx now and always have cafergot on hand.

Oral cafergot generally is a poor abort as it takes too long for your stomach to absorb it and get it into your system. One of the board members used to use the suppositories and had some success. It's an old school med which has really fallen out of favor due to much more effective treatments now being available.

I used to take an oral cafergot when I fired off the oxygen. The 02 would abort the attack in 6-8 minutes, the cafergot would prevent the come backer attack. At the suggestion of several board members I dumped the cafergot and instead chug a Sugar Free Red Bull with the oxygen. Works as well as the cafergot ever did.

Joe