My husband was 55 when he first got these CH 3 years ago.  He was diagnosed in Jan 08 and his cycle lasted about 2-3 months.   He was pain free until about 6 weeks ago, when they started up again.  Always at night around 10:30.

We live in Ohio, but he's an Executive who works in the Chicago area and is only home on the weekends so getting an appointment with a neurologist is hard.  I'm calling this am since he's working from home this week.  Hopefully I can get him in.    He's not on any meds right now and his pain is about a 6.

I found this website this weekend and have been reading and would like to ask a couple of questions.     1.   His CH start at 10:30 p.m. and will last about 3 hours; however if he tries to lay down to go back to sleep, they start again.  Is this normal?   He's usually up all night and with a stressful job, he's not sleeping real good until he gets home on the weekend.

2.  I read here that caffeine works good to abort the CH.  He made a pot of really strong coffee last night, and it did work to lessen the pain of the attack, but still up most of the night.  (He was up all night even b4 the caffeine too)

3.  He flies every week.  If we were to get some oxygen, is this something he could take with him on the plane?  and

4.  He has a defibrillator, is on heart medication and has emphysema.  Will he still be able to get these meds you talk about from the doctor?

thanks in advance for answers and sorry this is a long first post.   

Hubby's wife.

Hi there, susand, and welcome. Glad you found us and sorry you had to be here. The bad news is, if your husband has CHs, there may be some complications caused by his previous conditions which could prevent him from working with the some of the medications available. That is why you especially need a good headache specialist who is willing to work with your husband and with your hubbie's cardiologist. In the meantime, let's take a stab at your questions:


Quote:

1.   His CH start at 10:30 p.m. and will last about 3 hours; however if he tries to lay down to go back to sleep, they start again.  Is this normal?   He's usually up all night and with a stressful job, he's not sleeping real good until he gets home on the weekend.

There's nothing normal about CHs but there are patterns. Let's just say so many of us experience what you describe. Many of us find any rest, or deep sleep, is a trigger for the beast to come knockin'. Others find exertion and stress are also a trigger. Ironically, some find relief from CHs when they exercise vigorously. Not me, but some. Sleep is a victim of this disease. Don't know if he can take Melatonin, or in what doses, that would need a doctor's input, but if he can, many find some nighttime relief at doses ranging from 3-18mg/night.


Quote:

2.  I read here that caffeine works good to abort the CH.  He made a pot of really strong coffee last night, and it did work to lessen the pain of the attack, but still up most of the night.  (He was up all night even b4 the caffeine too)

Again, precautions on what I am about to write: doctor required. Now...many find strong coffee is enough to stay the beast. For a lot of us, energy drinks like Red Bull or Monster (with at least 1000mg taurine and 85mg caffeine) taken at first sign of hit, and coupled with high flow O2, can work to rapidly abort a hit. Check out the O2 link at left.


Quote:

3.  He flies every week.  If we were to get some oxygen, is this something he could take with him on the plane?

Unfortunately, I do not believe you can take O2 on the plane. But there are companies which can make it available upon arrival. If he can handle the med abortives, stuff like imitrex injections or nasal sprays, or migranal sprays, can be a good in-flight alternative.


Quote:

4.  He has a defibrillator, is on heart medication and has emphysema.  Will he still be able to get these meds you talk about from the doctor?

And this is the million dollar question as it were. Sorry I cannot be more specific, but your best bet is to read and research on this site, take notes and make lists, and bring the ideas with you to a doc appointment. Only a proper Dx can lead to the right Rx.

In the meantime, you are on the right track. Thanks for writing and being willing to assist your husband in all this. Ask anything and we will try to answer. God bless. lance

Lance,

Thank you for your quick reply to my questions.  I've written down your answers in a notebook and will continue to research through this website.   I called the Cleveland Clinic this morning and got an appointment for July 8th.  The lady said I could call every morning around 8 and ask if there are any cancellations for the day, so that's what I'm going to do in hopes of getting him this week.    If I have any more questions, I'll be sure to ask.   

Susan (hubby's wife)

Bless your heart for being a pro active supporter. If my wife hadn't found the original streaming CH board I'd still be snorting lidocaine drops and suffering through 90 minute attacks.

Lance has given you some great info. This is the oxygen link he spoke of:

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

Go to the medications section of this board, read the thread "123 pain free days and I think I know why." One of our research oriented members has stumbled on a simple vitamin/mineral/anti inflamatory regimen, all over the counter vitamins, all inexpensive, that's providing a tremendous amount of relief for many members of the board.

Then read this thread:

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

Another simple life style change that can provide a degree of relief. Keep reading like crazy. The most frustrating aspect of CH is how it varies from person to person, and even from cycle to cycle. It will take a lot of trial and error to find a regimen that works for your husband. The more alternatives you have the better off he'll be.

[smiley=hug.gif] [smiley=heart.gif] Again, welcome to the board, our supporters are near and dear to our hearts!

Joe

Re. Cleveland Clinic: Are you trying to see a general neurologist or a headache specialist? We strong suggest the specialist because so many neuros lack much training in complex headache disorders.

His heart condition will limit some of the abortive meds but options are available.

He is at the age when first starting Cluster is not common and so some attention must be given, in the diagnostic work-up, to a number of disorders which mimic Cluster but which are not headaches (some of which are rather serious).

Regardless of who you see, directly ask them to consider "cluster-LIKE" headaches (term used in the medical literature) in making the final diagnosis.

When you have a firm Dx in hand, please tell us and then we can supply more focused information which you may find useful. It's simply not wise to start using self-directed treatments until it's clear what you are dealing with.

He will be seeing Dr. DaSilva, a Headache Specialist who deals with CH at the Main Campus in Cleveland.    I wrote your info down in my notebook about the "Cluster-like" headaches and will definitely research this also.  While reading the MB, I noticed that most of sufferers have been dealing with these monsters since they were in their 20's, and that my husband didn't fit the profile.   I don't know at this time if that would be good or bad news, but I will definitely let you know the findings.   Keep sending me information b/c there's a lot to read and a short time to learn what it is I need to know.  I appreciate everyone's comments.   Thank you.

Susan

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
PRINT OUT.....
==========

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

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

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
======




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]
=======

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.

Hi Susand

With the advice you've been getting and in arranging to see a headache specialist you're doing what is needed to help get some control and relief from your husband's CHs.


susand wrote on Jun 27^th, 2011 at 8:31am:

3.  He flies every week.  If we were to get some oxygen, is this something he could take with him on the plane?  and 4.  He has a defibrillator, is on heart medication and has emphysema.  Will he still be able to get these meds you talk about from the doctor?

I too fly every week. You'll find that airlines (with a few exceptions) do not allow you to take your own oxygen on the plane. So it's just a matter of arranging to have oxygen at home and at work. I've an apartment I stay in during the week, so I just leave my oxygen there.

Many of the CH abortives, like imitrex, are vasoconstrictors. These may cause issues with the heart medication and any underlying issues. So you'll need his doctors to determine which can be used for him.

Keep us updated with what you find out from the doctors.

Bob Johnson - thank you for the reading material.  You're going to keep me busy for a while.  I just hope I can "understand" all of it.

Mike - I'll post what it is we find out.   

Thanks everyone.

Susan D