I've never thought of using the term clusterhead but it certainly applies during some of my bouts of pain.. (the last one I had to ask how to multiply single digits)...lol..

I am a 31 yr old mother of two beautiful girls. I started having headaches over almost a decade ago and have been treated for chronic migraines since. I often felt as if I were going crazy because I couldn't seem to explain that the pain that was bringing me to my knees only lasted for minutes at a time.

This past year I happen to be taking a "selfie" (yeah im not as all about me as that sounds) but I noticed that the left side of my face was swollen and kind of droopy.

Long story short and a couple of ER visits later finally a diagnosis of cluster headache  from the ER doctor... countless nights of reading and searching the web and here I am... hoping to find info and understanding....

My symptoms include sharp, but often quick pain in the near my left temple. Sometimes the pain is above my left eye or below it but not often.   There is usually a lingering dull ache in the left side on most days...

the only triggers I have discovered were getting too cold and when I do not get enough sleep.

imitrex does relieve the pain but causes severe tension

I guess what I look forward to the most is just getting to know others and hopefully finding a physician that is actually knowledgeable in my area.

G'day and welcome. Headaches are no fun for anyone but the most important thing is to get a true diagnosis so you can start on a proper treatment regime and claim your life back.

No doubt the ER doctor meant well but there's a bit more involved in accurately pinpointing a specific headache type. Especially when, as you say, yours last only for a minute or so.

On the top left of your screen is a button for the Cluster Quiz. Give that a go and let us know how you get on.

Regardless the outcome we'll help you in every way we can.

Cheers from down under,

Brian.

a minute may not be an exact frame of time but its not more than a few minutes 10 at the most... and not all of the pain goes away but the severest part of the pain... the excrutiating I cant think enough to even know name at that moment....

I am limited in experts of any kind in my area but have researched pretty well and it may not be "cluster headaches" but is definitely a TAC....

the diagnosis was based on the facial swelling, the pattern and characteristics of my headaches over the last 10 years... they are always on the left side... face swelling on that side, and the sharp piercing pain... All scans/test ruled out any causes (tumours, aneurysm, etc.)

Quiz results... 1-8 no... except 6... I say no to #1 because not all of the pain is gone just the nail in my head...

9-13 yes... 14-15 no... seems to have a lingering dull ache between bouts....16 sometimes

Of course Im going to try really hard to keep a headach journal this year to help with diagnosis and treatment :)

Welcome, sorry you had to find us. Has any medical professional you have seen thought your Headaches
could be suna headaches, Sunct.

Hoppy.

Since you will be with us for some time----
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
================
Let's assume you have Cluster--for the time being. Translates into a condition which cannot be cured but which can be effectively controlled for most folks. Second isssue, is that most doc have meager training skill in treating Cluster. So, would suggest you use this guides to search for a headache specialist.
--
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
======
IF you are using Imitrex as your only treatment, that proves the case--a doc who is not guiding you into the full range of meds which are needed for good control.

Basic treatment for Cluster is: a steriod to rapidly stop a string of Clusters; at the same time, starting a long acting preventive med; and then an abortive (Imitrex) which kills attacks which sneak through.

Beyond finding a good doc and getting a firm, clear diagnosis (important since a high % of Dx are wrong), you can start learning about this interesting disorder.

Print the PDF file, below, both for your learning and to use as a discussion tool when talking with any doc about treatment.

As you have time, explore this site for basic learning:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.

Finally, you will receive suggestions for varous treatments for Cluster. But until you know that it's Cluster you are dealing with, urge you to not get into self-diagnosis and self-treatment. This route can create problems for the headache doc (we hope!) you will be consulting.

---

Welcome to the board so glad you found us. What part of the world do you hail from? It's possible someone near you can recommend a good headache doc that knows his way around a sore head! Hoping we can help you find some relief soon.

Joe

I am from Central Arkansas... and I am glad that I have found ya'll but forgive me if I hope a few of you are right and they are NOT cluster headaches lol...

I started the new year paying more attention to details surrounding my headaches. So I have some good data so far. I did go the last two weeks without them and then slammed with a severe one yesterday... since I am not currently being treated, I took the imitrex I have left for the headache, flexoril cause the imitrex tightens my shoulders up and another medicine to help me sleep through it...

I look forward to getting to know some of you, learning information and if nothing else offering some friendly support to any that need it :)

Not as of yet. I come to a reasonable assumption that it is a possibility due to some of the symptoms... Again, I am limited to doctors specializing in headaches so you tend to get funny looks when you try to tell the doc that you feel a 10 on the pain scale for a min or so.. and then just a dull achiness... that repeats throughout the day lol





Hoppy wrote on Jan 1^st, 2014 at 2:27am:

Welcome, sorry you had to find us. Has any medical professional you have seen thought your Headaches could be suna headaches, Sunct. Hoppy.

Hi Bella,
Does this sound famillar.

Short-lasting Unilateral Neuralgiform headache with Conjunctival injection and Tearing, or SUNCT, is a rare type of primary headache that belongs to the group of headaches called trigeminal autonomic cephalalgia (TACs). TACs are caused by activation of the autonomic nervous system of the trigeminal nerve in the face. Patients experience excruciating burning, stabbing, or electrical, headache mainly in the orbital area only on one side of the body along with cranial autonomic signs that are unique to SUNCT. Each attack can last from five seconds to six minutes and may occur up to 200 times daily. Onset of the symptoms usually come later in life, at an average age of about 50. Although the majority of patients are males above age 50, it is not uncommon to find SUNCT present among other age groups, including children and infants. Have you tried the drug known as Methylprednisolone?

Hoppy.

yup... hit the nail on the head with this one.. the only thing I would add is that I have a lingering dull ache that stays for hours sometimes on the same side.... and they tend to occur similar to the cluster headaches...usually daily for weeks and sometimes months in a row...



Hoppy wrote on Jan 20^th, 2014 at 9:10pm:

Hi Bella, Does this sound famillar. Short-lasting Unilateral Neuralgiform headache with Conjunctival injection and Tearing, or SUNCT, is a rare type of primary headache that belongs to the group of headaches called trigeminal autonomic cephalalgia (TACs). TACs are caused by activation of the autonomic nervous system of the trigeminal nerve in the face. Patients experience excruciating burning, stabbing, or electrical, headache mainly in the orbital area only on one side of the body along with cranial autonomic signs that are unique to SUNCT. Each attack can last from five seconds to six minutes and may occur up to 200 times daily. Onset of the symptoms usually come later in life, at an average age of about 50. Although the majority of patients are males above age 50, it is not uncommon to find SUNCT present among other age groups, including children and infants. Have you tried the drug known as Methylprednisolone? Hoppy.

Hi Bella,
Those constant headaches that you are suffering, could be
rebound headaches, caused by Imitrex you have been on.
Maybe check in with your doctor and talk with him/her about
Methylprednisolone. Brand name Medrol and Solu-Medrol in
the US. And then see how you go.

Hoppy.

Since you're good at research, Bellasmum, you may care to google paroxsymal hemicrania. An unusual term, I know, but the good news is that it's easily managed and controlled.

Good luck and keep us posted,

Brian down under.

The minute(s) long attacks and that Imitrex doesn't give relief are two good indicators that you don't have Cluster.

Suggest that, if at all possble, you find a headache specialist. Nothing beats a good diagnosis before you start playing around with a variety of treatments.
====
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====

IF a headache spec. not available, call a general neurologists office and question close is expedience & training in complex headache disorders. It's striking how little training neuros get in headache while in school/training so don't go by the name alone.

Yes the length and frequency does not fit, however it led me to this group which has provided me with TONS of information. And granted they are different the severity is quite similar and it is nice to be surrounded by those who understand how a "headache" can disrupt the simplest of activities.

I am currently awaiting to be put on my husbands insurance (married last week) and while waiting I am keeping a journal, reading as much as possible, and trying natural things such as water and home remedies

That was interesting info... Thanks for sharing :) Sunct seems to fit better but will definitely add this to list of things to show doc


AussieBrian wrote on Jan 21^st, 2014 at 2:00am:

Since you're good at research, Bellasmum, you may care to google paroxsymal hemicrania. An unusual term, I know, but the good news is that it's easily managed and controlled. Good luck and keep us posted, Brian down under.

Well I finally seen a doc that admitted this was out of his league and was gracious enough to refer me to a neurologist (I have to wait til May 30) but he was at least familiar with SUNCT headaches and we tried Lyrica which has only provided me with a spinning room feeling :( but at least it's a step in the right direction.