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AshWednesday

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I don't know what to do..
Jan 7^th, 2011 at 8:33pm

Hi all,
I'm new to the site and needed some advice or support or something. My boyfriend of five years has just been diagnosed with cluster headaches. I have tried to talk other people about the pain he goes through, the crying, and shouting and debilitating headaches, but they don't seem to care or understand. I am frighteningly worried about him. I'm confounded as how people can live with the constant fear of these headache, and I feel hes been given a kind of death sentence in a way. It's as if his life can never be as happy or full, or he will never be as successful as he could have been without these headaches. I suppose I'm asking how you can live your life everyday wanting to die..

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Barry_T_Coles

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Re: I don't know what to do..
Reply #1 - Jan 7^th, 2011 at 8:58pm

Hi Ash & Welcome
CH is a sentence in a way buy it can be managed with the right advise, some people her have had the condition for very lengthy periods of time & still have a full life.

Read every thing you & your BF can here & from the tabs to the left, seriously look into Oxygen info,it's a great weapon in the fight against the beast.

There is a mass of info here & it comes from those who know best "Clusterheads"

I've had the condition for a little over 12 years now & in the early days I thought the end of the world had come for me but since finding this site & educating myself about the condition I have never looked back.

Cheers
Barry

PS Are you an Aussie from Victoria?

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Samiam

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Re: I don't know what to do..
Reply #2 - Jan 7^th, 2011 at 9:01pm

Well I guess you logged in at a good time. I'm 48 female and I have had these since I was 17. In the beginning I would get them everyday for 4 months straight then as time went on and I found Neuro's that had a clue as to what might be going on the time frame began to slim down and I'm now 30 yrs later I'm at 6-8 weeks and I have been going years between cycles.

Now I'm not telling you that during a cycle that you don't want to jump off a bridge, bang your head against a wall, or even punch someone but you need to realize that this is something that you NEED to beat. At least that is how I look at it.

When mine started in 1978 they didn't have a clue to what they were or as a matter of fact I have been told that women don't get clusters. Now at least they are making head way. I managed to get married carry two babies to term (first pregnancy they started in my 9th month the second they started in month 4 and they wanted to abort I refused) I did my pregnancy's without meds of any kind o2 was not an option at that time just shear will power and a lot of crying and screaming and pacing. The point is there is a life. When you don't cycle life is good and you count your blessings and get a taste of normal. When you cycle and your in the beginning you ask "Why me" or "Why now" you sink into depression and you feel helpless. Then you get a good kick in the A** and you get a game plan, you find your med that works find the support and you get through it to come out the other side with more knowledge for the next time.

Understanding, support, knowledge all help. Even though you can't even beginning to understand the pain we go through you can be there. Send him to this site. It has gotten me through very dark time and I have always come out the other side. You don't think that any human being is that strong but we are and we are stronger as a group. I have just returned after a 3 yr 11 month remission. Before that I had 5 yrs.

Blessings to you and your BF
Sami

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« Last Edit: Jan 7^th, 2011 at 9:07pm by Samiam »

"A smart man learns from his mistakes......A wise man learns from the mistakes of others"

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Bob Johnson

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Re: I don't know what to do..
Reply #3 - Jan 7^th, 2011 at 9:27pm

Beyond the diagnosis, we really need to know what medical treatment he is receiving and what type of doctor is he seeing?

The immediate goal is to gain relief from the attacks but he must start learning how to care for himself.

See the PDF file below for the types of medications which he should have been given.
===
This article will give some basic information about the nature and treatment of Cluster.

Cluster headache.
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(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]
===

Get back with some information about the doc and present treatments.

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Bob Johnson

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JustNotRight

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Re: I don't know what to do..
Reply #4 - Jan 7^th, 2011 at 9:32pm

Welcome Ash and kudos to you for seeking your BF help and added support!

Having CH tends to put things into perspective quickly. I thought I had a hard life before the CH beast came to visit. Well I'm now convinced that was just prep work for dealing with this horrendous pain we call CH. Keeping the faith and having a strong will does help get CH'ers through the hard times.

I have had CH for over 11 years and been chronic for most of them. Chronic means you don't get time off from the beast. I get hit daily by him and still work full time, so it can be done. Don't get me wrong I get down in the dumps about it sometimes as we all do on occasion, but I try as others here do to live for the PF times. The beast is allotted for me at least his (on average) 1 hit per day lasting anywhere from 1 to 3 hours and the rest of the time is MINE to live. No one understands CH as well as another CH'er, those who don't live with it or have a spouse with it, HAVE NO CLUE!!

Keeping this post up beat right now is not easy I've had a particularly hard day with a CH hit at work today and what seems to be a never ending CH hit this evening that just won't seem to go away. I went for my imitrex at work today only to find that the shot was BROKEN and not usable. Murphy's law and human error then kicked in as it was the only shot and form of imitrex I had on me today, so I was forced to fight my way through the hit at work with nothing to abort it. Now I am suffering the after affects (severely worn out from the battle) and still dealing with a 5 on the kip scale that started around 8:30pm. I am probably going to have to take a shot here shortly just so I can sleep (praying this one isn't broken as well) but as all CH'ers here try to do I wanted to post to you and let you know that your BF doesn't have a death sentence but merely another daily battle to win. With your support and knowledge gained here and maybe getting him to join as well he will come through every CH hit to thank you for your support and to take out the trash as needed. Wink

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If you are going through hell...Just keep going

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Guiseppi

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Re: I don't know what to do..
Reply #5 - Jan 7^th, 2011 at 11:19pm

CH is scary at first, and highly annoying!

But by no means is it a death sentence, or a sentence to a life of misery.

I managed a 30 year law enforcement career, so far a 28 year marriage...(knocking on wood!!) raised two beautiful daughters, now 24 and 26, all with episodic CH.

It takes a competent neuro, a lot of research on your part, an effective abortive and preventative routine.

Don't despair, read like crazy. We have a saying around here, an educated CH'er hurts a lot less. And thanks for taking the lead as a supporter, it's a tough road you have to travel, lots of support for you here too. Smiley

Joe

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Callico

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Re: I don't know what to do..
Reply #6 - Jan 7^th, 2011 at 11:53pm

Hi and welcome to the mad house! First of all, THANK YOU for coming here for your BF and for sticking with him. Way to many cut and run at the first sign of hard times, which CH can be, but you didn't run. Instead you came to the place that can help the best. Second, CH while it can be debilitating and make life difficult is not a death sentence (unless you help it), nor does it have to ruin your life. Had I know when diagnosed over 30 years ago what I know now I would not have had to fight drug dependency or addiction (prescribed only) nor would I have gone over 20 years with NO treatment at all, nor have lost job opportunities and lost out on family and social activities. After I found this place I have learned how to deal with CH so that although chronic for over 8 years now I'm able to function and have a pretty full life.

Bring our BF here and take the opportunity to learn from a family that collectively knows more than all of the Drs in the world (with the exception of a very small handful) about CH and how to deal with it. Tell him to read, read, and then start reading. As he reads to ask questions. There are no dumb questions, although he may get some dumb answers, but he'll learn to ignore them I hope.

For you, there is a special section for supporters that helps to give YOU the support and encouragement YOU need to help keep him going. You are most certainly welcome in all of the other sections too! You supporters are the most important part of this site. Without good supporters we clusterheads would have a much more difficult time.

Jerry

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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: I don't know what to do.. Reply #7 - Jan 8^th, 2011 at 8:19am AshWednesday, life is changed, not ended. And while the pain is a darkness threatening to overtake us, with good abortives and preventatives, and the help of others, we live. How well we live is up to us. God bless! lance
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Mike NZ

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Re: I don't know what to do..
Reply #8 - Jan 8^th, 2011 at 12:49pm

Hi AshWednesday and good on you for being a good supporter for your BF.

When CHs arrive it may seem to be a huge impact on life, but once you get things under control it is something that you can cope with and get on with life too. Yes the beast may come to visit but when you've medication to prevent many of his visits and ways to cut short a CH when it does happen, life really does change.

It also helps to have this forum where there are people who truly understand CHs, either as they get them or they support someone with them. Unless someone has this experience I'm not sure it's possible to really understand.

So I don't live every day wanting to die, I live it wanting to live and do whatever I want to do between CH visits.

Get your BF here too and you should both be able to learn a lot about how to control his CHs.

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BobG CH.com Hall of Famer Offline Posts: 6422 St. George, UT Gender:	Re: I don't know what to do.. Reply #9 - Jan 8^th, 2011 at 5:27pm Hi Ash. May I call you Ash? Thanks, Ash. One thing that is very important and needed by a cluster sufferer is a supporter. Someone that is willing to be there and help him/her through. Your coming here looking for help for you boyfriend shows you are the one. You're a keeper. Thanks from all of us.
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BigCoffinHunter

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Re: I don't know what to do..
Reply #10 - Jan 8^th, 2011 at 11:43pm

Hi Ash, I'm sorry your boyfriend and you have to suffer the curse of the Beast. It is f*cking awful, BUT there are ways to make it better!

There are meds which work to reduce the frequency/intensity of the attacks. Verapamil, Topomax, and Lithium all have good success. O2!!, Imitrex/Triptans, energy drinks (Red Bull) all work to help abort attacks. Most important is that your boyfriend sees a headache specialist, one who knows how to treat CH.

Once one has a successful regimen of treatment, it really helps to deal with the depression that inevitably comes with the start of a cycle. Once the cycle ends, stock up on meds for next time. Most of all, enjoy the time spent pain-free. It gives one a new perspective on pain, a twisted ankle or injured back is nothing, and you can just deal with it. Every time I get hurt, I groan and think "at least it's not a CH" and it's manageable.

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