I was just diagnosed today suffering from Cluster Headaches.  I am so glad I found this site.  Thank you for sharing all of your information.  I've been awakened in the middle of the night with the most intense pain - feeling like my head will explode. But only a few times.  I then was having other symptoms - tooth pain, one-sided drippy nose, facial numbness.  I thought it was sinus related. This all started in mid-July, saw 4 different doctors, sinus x-ray, brain mri, no diagnosis until today.  Finally, a name for all my symptoms. I have so many questions! 
But the main thing I would like to know first is is it common to not have the intense headache pain all the time?  I, fortunately, have not had that pain since mid-July.  The drippy nose, tooth pain and numbness have been a constant however.  If someone could answer this or direct me to the proper place, I would be very grateful. :-?

"...all the time... If you mean constant pain, then no. If you do have constant--all the time without breaks--then some additional attention by a headache specialist is a must.

Cluster commonly shows in more or less regular patterns. May have a series of attacks over weeks/months, then a quiet period which may be quite regular in duration. Others have break for a year or more.

Variation is the watchword with us so don't get anxious about changes--unless you develop non-stop pain.


When starting Cluster for the first time, it's not uncommon for it to take weeks to months, even a year, for the pattern of your attacks settled into a predictable pattern. Early period often marked by variations in location, quality of pain, and duration.

Thank you for your response. Perhaps you know how much it means to me. I wish my family knew how much this "diagnosis" affects my life. Thinking back, I've had this "monster" for a very long time.  The intense headaches last for maybe 30 minutes, then go away. It wasn't until this July that the other symptoms appeared. I am a 51 year old female who has tried to convince my doctors that my symptoms are not related to menopause, or the fact that I have 4 children, or that I am depressed or anxious.  They are real and I am so glad that I found you.  I don't mean to lay all this on you, but I am so grateful to have someone acknowledge me and what I am going through.  I have felt so far away from people for so long.  I don't know what it feels like to be normal.  I know that everyone is different but will my "condition" get worse as I get older? Or is every "event" different in e :-/very person every time?

Hi AuntJuju,   [smiley=wave.gif]
I know exactly where you are coming from. No one (except other CHers) understand the devastating effect this can have on your life. Apart from having to cope with this awful pain, there's all the emotional stress of holding together relationships, jobs, etc. and living with the fear of the next hit.
Many people have lost jobs, leading to financial problems and maybe lost homes. Others have lost marriages because the spouse couldn't cope. I myself lost a really good friend (or so I thought). At first I got the usual responses from her - take an asprin, - lie down for half an hour, etc. Then she would just turn and look the other way, with a sour look on her face, and ignore me while I writhed in agony, and in the end she accused me outright of putting it on for attention. Guess she wasn't such a good friend after all. Haven't seen her for a while.
Luckily I have a very supportive family, but I live with a lot of guilt. My husband and son have to go to work every day after being up night after night with me. They look tired and drained and emotionally stressed. They have their own illnesses to deal with and it seems unfair that they should suffer for mine.
There is also the problem of trying to educate your doctor. I saw one who said it can't be CH because that only effects men in their 20s. I'm a woman, and was 57 when this started - 63 now.
As for will it get worse as you get older, I think every one is different. I have seen reports that say it gets easier as you age, but then I was 57 before it even started so I'm not too hopeful there.
The symptoms you have without the pain, are what we call shadows. We all have our own version of them.
Keep coming back here, you will get all the support and friendship you need. Read everything - there are many helpful remedies and suggestions. Check out a thread titled "123 days pain free....and I think I know why".
Take care
Maz

AuntJuju - I don't see that you posted in the Getting to Know Ya ( START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE )  section yet - please do so and post where you live (general area, country / state) what docs have said about your condition and what kind of docs you are seeing.  Let us know what treatment you are on and we can help guide you with some additional methods and advice.  Best of luck to you!

Thanks for the reply! I am currently seeing a neurologist who has me on a 12 day steroid regimen to, hopefully, stop this round of CH.  I've been suffering since mid July and am very anxious to be done with this episode.  The doc said that the 12 day regimen usually knocks CH out.  From your experience, will this work? [smiley=undecided.gif]

Standard treatment routine is: steroid taperin down quickly. This will block attacks with hours.

At the same time, start a long acting preventive med which block attaks/reduces frequency.

And adding a fast acting abortive med which kills attacks which sneak thru.

Pring out the PDF file, below. These are the standard meds which are most widely used. This list is a good talking tool to use with the doc.
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Learning about Cluster is essential for your comfort and as a way to sort of check on your doc's skill/knowledge. Our key problem is that most docs have received little edcation/training in treating complex headache disorders, and this includes neurologists.
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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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Three 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
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.

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Good morning, Auntie. Bob has given you pretty much all the info we have on treatments so read it and take it to heart. I would only add that we have found pure 100% O2 delivered at 15-25lpm with a nonrebreather mask (no holes) coupled with a good energy drink (Monster, REd Bull etc) can be a highly effective abortive. It can drop your pain time from 30 minutes to less than 5.

You also asked if age could effect CHs in a positive way. No consensus on that. It hasn't for me. I am chronic and a good day is a day when there are no more than 1 or 2 hits. Others have found the beast goes into hiding. We're each different. If you have any more questions, please ask! God bless. lance

You have received some great advise on here, you always will too.  These Cluster Heads are all awesome folks.  I would add that when you are getting your oxygen....ask for M Tanks for your home.  They are bigger and last longer.  I have found that the oxygen people try to give you E tanks,  which don't last long at all.  Those of us with Cluster Headaches go through the oxygen quickly. 
I hope this tip helps....M tanks for me please!!!

Smaller tanks can be useful too when out and about as they are a bit lighter!

Hey AuntJuju,

I'm 51 (as of Sunday...lol) I think the main thing that you're looking for is validation if I'm not overstepping here.  I totally understand because I started with Cluster's out of the blue at 17 in 1979 and back then not too many heard of Cluster's and if they did they didn't really know how to treat them, it was a lot of trial and error.  There was no internet to find info on your own and if your family didn't understand (mine,very few did because the doctors didn't understand it) you felt like they thought that this was all in your head.  I went years with family members thinking it was just an act.  I'm the only one in my family to ever have Cluster's even to this day, so no one I even know can relate to this day other than this site.  I felt alone and desperate.  I thought about ending it all the time because every time I saw a new doctor they felt I was drug seeking or that I was totally nuts or if they did want to help it was new drug after another and nothing would work.  I popped Fiorinal all the time while in cycle and that was every May through Sept everyday then as quick as they came they went away until the next year.

I started dating my boyfriend/husband at 15 and he was the one that really knew something was wrong he was also the one that kept me planted on this earth.  As we got older he then started to take me to new neuro's but again a white female in her late teens early twenties, never smoked or drank or did drugs couldn't not have Cluster's.

It wasn't until I was 24 and working in the medical field did a doctor (who I was working for when a cluster hit) knew something was wrong.  He watched me go through it and called a neuro made me walk over to see a Dr. Steven Silberstein.  Within one hour I had and EKG/MRI and I was in the hospital.  My family was floored and I gained validation.

I think that was when people knew it wasn't an act and was told by this Doctor that he didn't know how I did this for almost 7 yrs.  I worked, I went to school I got married all while dealing with this.

I stayed in the hospital for almost 10 days with several intravenous DHE 45 treatments to try to break my cycle.  It was a nightmare.  I would get 3 a day and spent the rest of the time throwing up my guts.  I could not take anti nausea meds so this was my life.  I came home armed with a needle of DHE 45 (back when it was in a glass vial) which I would take everyday until my cycle would break on it's own.

Over this time I had tried every med known to be used for this.  Nothing worked.  Still to this day no preventive works.  Dr. Silberstein I owe a lot to since his treatment plan got my cycles down from 5 months every year to 6-8 weeks.  He did not have the best bedside manner and it was his way or no way.  Questions were not to be asked.  Just do it, and I did.  UNTIL....

I got pregnant when I was 26 when at my visit (cluster free) I informed him because I wanted to be armed with what could be done if I got the cluster's while pregnant. He became enraged and without any discussion he discharged me from care.  I was shocked.  My OB called him for some guidance and he refuse to even discuss what could be done.  From that day on I never saw him again.

I carried to term but my last month I started to cycle.  I refused to take anything and it wasn't easy but the last few days I was told if it became unbearable I could take a fioricet (I had to have a C-Sec) I took two over the month.  There were complications with my delivery and I almost died (long story) but the baby was good.  He was 10.2 21.5 inches long.  He really was too big for me.

After I had my first baby I noticed that I was skipping cycles and they were no longer staying to the May-Sept time frame.  They now would come when they wanted still staying 6-8 weeks but they were hitting harder and I was getting more a day.  It was like the beast wanted to make up for lost time.  So the hits were harder and now lasting 2 hrs up from 1 hr hits.  But when they stopped I could go up to 2-3 yrs without any hits.

I had my second baby @ 33 and for the first 4 months it was a nightmare.  They gave me Stadol but I refused to use it.  I had to have an emergency MRA to rule out a brain bleed.  It was nuts.  My cycle broke after that and I went into remission for several years.

I continue to this day with going several years without a cycle but when I do have them they are the badest SOB's I ever had, but I know that with this site and the medical breakthroughs I can do this.  I have the support of my boys and my husband.  I'm blessed.  What is most important to me is they may not know what the pain is like but they have seen me go through them and they are right there to hold my hand or even just sit there so I'm not alone.  I no longer get looked at like I'm nuts or the pain is something that I can take an advil and it will go away.

Why did I type such a long story, was to tell you that you are not alone.  We are here.  We understand and everyone here has their own story to tell.  For me I now know what I need to do.  I can only use Abortives.  Preventives don't work for me.  I use Imitrex and O2. I always keep 2 E tanks on hand even if my cycle stops.  I dance and maybe cry but I know there is a light at the end of the tunnel.  I know when this passes I regain my life back but the beast will never let you take anything for granted. For me my cycle will hit at the most inconvenient time like after being PF for almost 5 yrs we plan a trip to Disney and 3 days prior to me leaving for 10 days, I go into cycle.  My last cycle Jan 2011 was the day of my husband's surgery.  While sitting in the waiting room I got hit out of the blue.  Thank God for a great nursing staff that pulled me out of the waiting room gave me a private room for the next 10 hrs and O2. I got through it.   For many here this is a daily occurrence. I can't imagine the strength it takes to do this, yet they are here helping us alone with the best support system in the world.

Many will also have two types of headaches at the same time.  It's not uncommon to have cluster's and migraines.  My cluster's always hit on the left side.  I've had a couple of classic migraines and also optical migraines.  Not many but it can happen.

I get a strange feeling on my left side of the head and in my jaw when my cycle is going to start.  The first week is my ramp up week.  This is telling me I better get everything in order.  I get my O2 and fill my meds.  Everyone gets something different.

If I can help you through anything, email me.  I will always be available.  One day at a time wishing you soon PFNAD'S.

Sami





 

I had my first clusters at age 28, which was in 1980. I had already been having migraines since age 12 or 13. I don't think I have ever been officially diagnosed with either ("women don't get clusters"), and after finding this site, I simply told them I had clusters. My heart goes out to you. It's a horrible curse. I got divorced when my kids were young, and some times I had to call their dad to come get them ready for school at 6 a.m. (a 30 minutes drive) because I was a-pacing and a-moaning. They were all great about it. Everyone else could only think to say, "Do you think it's stress?"

Hey AuntJ,
I am supprised your neuro didn't give you oxygen. It is the best abortive for most all of us. Read the "oxygen info" link on the left menu. Print it out and insist on it. Read to be sure you get it right, and it may just change your life. Hoping the best.