Hi folks. I'm new here. Found you surfing Google.

I've had severe headaches for years. Thought it was migraines because I usually have the auras.

They stopped for a couple of years after menapause and while being on lots of steriods for my back.

Went to a new doctor and she thinks its cluster headaches but she is running the normal tests to make sure it's not something else - blood work - xrays - CT scan.

Meanwhile, I'm keep a headache diary for her - I go back in three weeks.

I'm nauseas most of the time and the headaches come and go, like I said, usually preceeded by the aura. I didn't know aura came with anything but migraines.

Glad I found you. Off to check out the other areas of the forum.

Linda

Welcome Linda,

I really hope for you they are not clusters, but if they turn out to be so, this is the right place.
As far as I know, aura's are not common with CH. Maybe you have a combination of both.
Keep us posted!

Pascal.

I was asked to describe how my headaches start and end.

For the past 2.5 to 3 months, they usually (not always) start with the auras - somethimes in my sleep. I was prescribed Maxalt MLT for migraines years ago but this just makes me sicker on my stomach.

The headache is usually in my forehead and the back of my neck. All I want to do is close my eyes and crawl in a warm bed. Sometimes the side of my head feel like if I could put on a tight hat it would feel better. The pain usually last for 20 minutes to 4 hours with lingering nausea.

I get annoyed by people talking too loud or the TV being too loud. I am an introvert with social anxiety and the headaches don't help.

I really never get over the nausea before the next headache comes again. I can't really say what triggers them - doesn't seem to be food. I don't drink alcohol and I gave up caffene sodas a year ago so I could sleep at night.

After a really bad headache, all I really want to do is sleep for days. If it's on the weekend, sometimes I allow myself the luxury of a day in bed.

My DH thinks I a slug.

Linda,

Crawling in bed to just get it over with, is not an option for clusterheads.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Watch this clip, it gives a great illustration of how a hit is.
Talk to your doctor about it, show it to her if you can.

All the best,
Pascal.

This is the time to start educating yourself. Explore the buttons, left, starting with OUCH and all its internal links.
=====  see,

 
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 best overview articles I've seen. Suggest printing the full length article 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.

Thank you guys and gals for being patient with me - I obviously don't know what I have.

For 30 years I have been told I suffer with migraines and now a doctor tells me she thinks they are cluster headaches because I rarely had headaches after menapause, brow lift and being on steriods for two years for back pain.

Now I am having headaches again. This mornings was a sharp stab in the right side of my head that lasted maybe 45 seconds. If I had to put up with that very long, I would be crazy.

Like all of you I am searching for information - thanks for the links by the way.

I'm going to browse the forum. Don't mind me. Just pretend I am a house guest who knows where the beer is kept in the kitchen and knows how to make my own sandwich.

I posted because I felt it would be impolite to just lurk while I was finding my way around - kinda a way to knock on the front door and ask myself in.

Hugs,

Linda

Linda,


I really do hope you'll find out soon what it is you must endure: the sooner it is clear, the sooner a proficient treatment will be decided on.

We are here to give new people advice, as others did with us when we came looking for help.
Doesn't matter if you have CH or not, the matter is you're in pain and we just want you to get a diagnosis and then the appropiate help.

Find out all you can, or as Guiseppi said: it is up to YOU to educate your dr.

Pascal.

Thanks, Pascal,

Your post put a tear in my eye and a lump in my throat.

Hugs to you fellow sufferers regardless of the cause.

Linda

maalstroom wrote on Nov 21^st, 2008 at 10:56am:

Crawling in bed to just get it over with, is not an option for clusterheads.

Pascal, I don't mean to be disrespectful to you or to the well known common behavior during the attack.  As far as I can remember, I walked around a bit with a "perfect 10" a few times in my youth, without knowing where to place my body.  But I've never been a head-banger or a pacer, and I'd hate to see that to be a definite determining factor for the diagnoses.  I do crawl in bed during a bad attack, pretty immobile and focused on the pain or stare at the clock to wait for the magic "been 60 minutes, almost over".  I guess some have different ways of coping with the pain, and I even think it's maybe a personality or cultural thing.

Linda, I really really hope you don't have CH.  FYI, I was in remission while I had steroid shots into my thumb twice a year.  My neuro told me many years ago that I'd never ever grow out of CH after menopause since CH isn't like migraines.  But I don't know that for sure as CH seems to have gotten milder after I hit 40---I'm not sure whether I got better at dealing with it, Verapamil is working well, or actual hormonal changes.  If you get properly diagnosed to have CH, yes you'd make your own sandwich and learn to handle it.  If you're not a heavy caffeine consumer like I am, you may want to try a strong cup of coffee.  If that helps, it's a good indicator that the pain is from enlarged veins.  Then O2 should really help whatever is causing your headaches.

Oh, then I apologize and take my words back, Mrs T. I shouldn't have assumed that it was a behaviour typical of all sufferers.
Personally, lying down will intensify a hit, so I move one way or the other.
Even lying down too soon after a hit will bring back the pain, is my experience.

And no, I don't consider it disrespectful  ;).

Best wishes.
Pascal.

Hi Linda,

I can certainly understand your frustration and I am happy that your Dr. is going to order all of these tests.  I am very curious as to why this new Dr. thinks it's cluster headaches.  The symptoms you have described are almost "classic" or textbook... of Migraines.  

Go to this link...

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

and click on Migraines and read the symptoms.  Go back to the first page and scroll down to Cluster headaches and read that.  

The more you learn and become educated about either..the better.  


Nice name by the way.   ;)

Linda_Howell wrote on Nov 23^rd, 2008 at 3:25pm:

Hi Linda, Nice name by the way.   ;)

Two Linda’s; this could get interesting when we start thinking you guys are talking to yourselves. :-*

Thanks for the information on migraines and clusters. I am well versed in the migraines having had them for 30 years.

Also thanks for the info that not all CH are the same.

My CT is Dec 1. I'm keeping a headache diary for the doctor.

Aside from the ones that start with an aura, my headaches seem to start with a sharp (I mean really sharp so it's a good thing it last only a few seconds) pain on one side of my head over my ear. This passes quickly and then I have a whole head ache and nausea the rest of the day. I do not wake up with a headache. It usually starts between 7 and 9 in the morning and lasts until I fall asleep at night, no matter what I take for it.

Hi, Linda - nice name to you.

Linda

Dear Linda,

My sincerest empathy for your condition, but I am glad you found this site.  I too am relatively new here, but I have found a warm welcome and great support here.

I am the resident Catholic Seminarian here.  I will continue to keep you in my prayers along with all the new members as well as those who are suffering greatly at this time.  

If I can be of further spiritual assistance, Please do not hesitate to send me a private message or email, or whatever.

God bless you, protect you from all evil, and bring you to everlasting life!

i hope for your sake its not ch.
but i felt compelled to write that i am not a real headbanger all the time. mostly i rock in place on the couch. when the 7 and aboves come i hit the palm of my hand against my head for that 1 millioneth of second in relief usually by then i am on my knees on the floor or in my bed on all fours just crying out and completly focused on the pain. no one or anything is in my thoughts.

Hey Linda,
I'm a migrainer (and it sound like yours were menstrual migraines also), but  I don't have the aura or the nausea or most of the rest of the factors associated with migraine.  I took Maxalt MLT for years and like you, it got to where it made me nauseous (and didn't do anything for my headaches either).

While *menstrual* migraines usually do disappear when menpause is complete, that doesn't mean that you can't ever have a migraine again.  I had to go back on the *pill* to help regulate, and we were hoping that I would only get migraines every 3 months or soor possibly not at all (I take the pill for 3 months straight with no off times).  This has been the case for the most part, but I do have breakthrough migraines that are triggered by a variety of things, including stress and severe sinus infections.

The best thing you can do is educate yourself.  You are your own best advocate when it comes to getting the proper treatment (and for me that has been Frova as an abortive).

Carolyn

I too am hoping these are not clusters. One test I use is that do these things wake you out of a sound sleep? Mine sure did and the last place on earth I wanted to be was laying flat. Cool, dark, alone and silence was my thing.

Charlie