Hi, I'm 20 yr old female, and for the last 4 days I've been getting really painful headaches on the right side of my head and behind my right eye. They've been so bad I haven't been able to sleep and when I wake up the rooms spinning. I went to the doctor's yesterday and asked if it was clusters, but he shrugged of my question and wasn't particularly helpful. I was told to take some ibuprofen and to take it easy for the next week. If it continues to come back.

I've taken some ibuprofen, which hasn't helped.... and now I feel like I have to somehow tolerate these really bad headaches for the next 6 days.

Some help would be lovely!

What about these headaches makes you think that they are cluster headaches?  Have you filled in the cluster quiz - link to the left?

The fact that the doctor has dismissed your question of it being cluster headaches means nothing as far as I am concerned - I went undiagnosed for over 10 yrs!  But it would help if you could give us an idea of how you suffer, what your symptoms are etc  so that we might be able to help you.

Keep us posted,

Hope your pain eases soon!!

Kate

Yes I've taken the quiz, which was why I thought I had clusters in the first place. I had 0 on numbers 1 to 8, but selected 6 from questions 9 to 16.

I've been getting these headaches at a similar time, morning, afternoon and night. They'll come on suddenly and last about an hour/ hour and 1/2. They're always very painful, although the one I get in the afternoon is nearly excruciatingly painful. The pain is behind my right eye, up and around my right temple and (when its at its worst) behind my right ear as well. I also get dizzy when waking up in a morning.

They only thing I don't get is a red/watery eye, or a stuffy nose.

Is it possible that the doctor doesn't know what clusters are? I was asked more migraine-related questions, which I know I don't have...I think he then dismissed it for a normal tension headache. This is a lot more painful than any headache I've ever had before though.

If you have any choice, don't waste any more time.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. 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.

5. 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.

6. 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.
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Read the PDF file, below. These are the kinds of treatments which a doc, who knows headache, will be using.

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It is possible that the doc is uneducated on clusters.  If he does know about them it is likely that he believes that women don't get them.

The next time you feel a headache coming on, drink an energy drink, like Red Bull, as fast as you can.  If it is CH, it may help lessen the pain and the duration.  Even very strong coffee can help if you drink it at the very first sign of a headache and you drink it quickly.   

Please try to get an appt. with a headache specialist to get a proper Dx.

PF wishes,

Jeannie

thanks for the links, the pdf was especially helpful. Unfortunately I live in the UK, so I think the only way to get help is through my gp. There is an Ouch UK site though, so I'll have a look on there.

Thanks for the tip, Jeannie! I'll definitely go and buy some energy drinks tomorrow when I'm out. Think I'll try cola until then (don't like coffee!). Expecting another headache in an hour n half... glad I'm not the only one who's suffering. I told my mum and she just laughed and said "trust you to get something the doctor can't diagnose!" Thanks mum! haha.

Your support group is very good:

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

Yeah, the information on there's really good, it's a shame that you have to pay £10 to become a member though and use their forum. Don't really want to pay that much!

pilliard wrote on Aug 12^th, 2010 at 6:29am:

Hi, I'm 20 yr old female, and for the last 4 days I've been getting really painful headaches on the right side of my head and behind my right eye. They've been so bad I haven't been able to sleep and when I wake up the rooms spinning. I went to the doctor's yesterday and asked if it was clusters, but he shrugged of my question and wasn't particularly helpful. I was told to take some ibuprofen and to take it easy for the next week. If it continues to come back. I've taken some ibuprofen, which hasn't helped.... and now I feel like I have to somehow tolerate these really bad headaches for the next 6 days. Some help would be lovely!

You do not have to stick it out for 6 days.  Call your Doctor back and tell him that Ibuprofen isn't touching the headache and that you have not had a good nights sleep in ____________  (How Long?) and that he needs to do something to help you.  Not to mention the Dizzy thing is not good either make sure to tell him that as well. 

I have found in the past the more insistent the patient is about his/her care the more the Doc will pay attention at least in most cases.  Give it a Shot.  The pain and lack of sleep are really doing a number on your body and the Doc. needs to know this.  I'm betting if you don't call the Doc. back before the 6 days is up he'll assume the Ibuprofen helped or that what ever is going on is not that serious. 

Good Luck to you!!

thanks! I think I'll have to.

On average, how long do these clusters last before they go? Is it days, weeks or months? Please don't say months!!!
Thanks

JustNotRight wrote on Aug 12^th, 2010 at 5:21pm:

[quote author=4E575252575F4C5A3E0 link=1281608981/0#0 date=1281608981] You do not have to stick it out for 6 days.  Call your Doctor back and tell him that Ibuprofen isn't touching the headache and that you have not had a good nights sleep in ____________  (How Long?) and that he needs to do something to help you.  Not to mention the Dizzy thing is not good either make sure to tell him that as well.  I have found in the past the more insistent the patient is about his/her care the more the Doc will pay attention at least in most cases.  Give it a Shot.  The pain and lack of sleep are really doing a number on your body and the Doc. needs to know this.  I'm betting if you don't call the Doc. back before the 6 days is up he'll assume the Ibuprofen helped or that what ever is going on is not that serious.  Good Luck to you!!

This is actually totally true.
Squeaky wheel gets the grease and all that...
Doc is likely so busy that if he doesn't hear anything that you're doing ok.  Out of sight out of mind.
(wow, I'm just full of the cliches today!)

Give doc a call (daily if necessary) and let him know that you're still having problems.

Hello Pilliard

You can get to see a headache specialist with out going through your GP the London headache clinic dose not require a referral but they do ask for a donation which I think was £100 althoe low income etc people are not asked to pay so much , look it up on google.

energy drinks can help as previously mentioned , Relentless Origin tastes much the same as red bull and is half the price for the big cans (just found that out my self )

As for how long a cycle will last for , I'm afraid it's different for every one. I've only had one cycle so-far and that lasted 4 months  >:( but for some people here it's only a few weeks.

Don't be disheartened you can always see a different GP if you can't get any sens out of your one , and now you have the best source of ch info that there is .... us lot  ;)

Good luck and God bless

Nigel

Hey Pillard,

I agree with a lot that has been said here.  Definately see your doctor again or visit another one.  On the whole and over the years my doctors either knew nothing about clusters or were also of the opinion that women don't get clusters and put mine down to tension headaches.

Generally my cycles will last about 8-10 weeks or so, but as they say it is different for everyone.  I do hope that you get the help you need really soon!

Keeping you in my thoughts,

Kate

pilliard wrote on Aug 12^th, 2010 at 5:30pm:

thanks! I think I'll have to. On average, how long do these clusters last before they go? Is it days, weeks or months? Please don't say months!!! Thanks

Some have them a few months out of a year (Cyclical), others have them year round (Chronic).


Here's some other helpful information for you.

4-Way Nasal spray (helps with the annoying congestion),

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting,

Melatonin or an Allergy pill at night before bed to help avoid night time hits,

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.


See the links below for different types of headaches on the NIH website or the PDF of same article.

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

PDF of Same NIH Headache Article
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE


I Hope some of this helps and you find relief soon!

Pilliard,

     I'm sorry to hear that you are suffering so. I also think your doctor is a pillock. I suggest you run from him as fast as possible and find someone more knowledgeable and sympathetic about headaches, especially cluster headaches. For the most part, it sounds like you very well may have cluster headaches :-/ . However, your mentioning of dizziness concerns me - that is not a typical symptom of cluster headache, and I think you definitely should have that checked out.
     I honestly hope that you don't have cluster headaches, but if you do, this is the place to be! If you do, though, and are not afraid of "alternative" treatments, you might also want to check out START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (there's a link on the left near the bottom of the menu). Many people use their methods and swear by them. Sadly, they are illegal here in the USA, but I think I read somewhere that they are legal in the UK. I will keep you in my thoughts and prayers!

You have been given some great advice already, I will add just one, start a headache diary. Log when the attack starts, how fast it builds, how high it builds, (the kip scale on the left is a great tool for that), how long the pain stays at peak level, how fast it goes it away. Describe where it hurts, how it hurts, stabbing, burning, boring, throbbing etc., are there more then one type of pain, can you identify any triggers, foods, smells, sleep disrutpions, do any meds help at all?

It sounds daunting but a correct headache diagnosis is in the details. The more details you can provide, the better your odds of an accurate diagnosis and an effective treatment regimen. Wishing you speed in diagnosis and treatment.

Joe

If they're lasting > 1 hour, I would try picking up some Imigran Recovery - from what I've read, it's sumatriptan available OTC in the UK.  For me, Imitrex tablets (same sumatriptan) kicks in 40 minutes after I take it and the pain is completely gone 10-15 minutes after that.  Of course that 50 minutes can be anywhere from tolerable to excruciating, but it's good to know it will be gone soon.  If it doesn't do anything, it's probably not cluster or migrane, and if it does, you've got something to help until you find a better doc.

Oh, mine come every two years and last about three weeks, and they also don't seem to be as severe as some people who post here.  So I guess I'm lucky...