Hiya,
Am a newbie so please be gentle with me. Have had my headache for 16 days now. It is either agony or a dull ache but never goes completely. Have seen my GP who has told me to take painkillers and sleep as much as I can. I don't want to eat and have no appetite. Feel like a total wreck. Am seeing my GP again tomorrow but he makes me feel like I'm wasting his time.

Just want the pain to go away [smiley=cry.gif] [smiley=cry.gif] [smiley=cry.gif]

Hey there suesue,

I would suggest taking the cluster quiz over on the left side list of links.

<<4th link down.  Come back and let us know how you fared, and we can help point you in the right direction from there.

Keep your chin up...there are lots of folks here who will help guide you.

Take the "cluster quiz" and read the "cluster traits", on the left buttons. Not likely you have cluster from what little you said.

There are hundreds of conditions which can show up as headache and you need a good doc to do the diagnosis--NOT a do it yourself project.

If you have the option (discuss with your GP) find a headache specialist.

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.

Hi !

I hope you find relief soon 16 days is too damn long!

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

Good Luck to You!

You've been given some great advice, resouces and information. The correct diagnosis is absolutely critical to an effective treatment regimen. Meds which work for one headache type are worthless for,another. General practitioners and even neurologists do not  have the experience or knowledge base to deal with headache diagnosis. A headache specialist is your best bet at relief.

For now, when you feel a headache starting to peak, pound down an energy drink, Monster, Rock Star, any containing the combo of caffeine and taurine. Works to abort or at least reduce the intensity of many attacks.

Wishing you speed on your diagnosis. If it does turn out to be CH this place is a treasure trove of knowledge for you.

Joe

Hi Suesue - did you get this sorted?  I am new to this site but have learned so much - you must tell the doctor if your symptons are those of cluster headaches.  I was only diagnosed during my second episode - after really suffering and self-medicating assuming I had a sinus problem the first time around.  There are some reasonable drugs around but by all account o2 is the best - I have yet to get this from my doctor yet despite living in the UK (insurance isn't an issue).  The one thing I do find, is that during the periods without and attack I appreciate life much more than I did before getting CH's - I am just off the back of a 3 year remission - hopefully you will be able to enjoy such a long break - I had almost forgot that I was even a sufferer - which is the best thing to do whilst you haven't got the problem!  I hope all is well with you.  Ed

Double dittos everything above, and...please be careful of those pain killers. They can mask symptoms, are dangerous in themselves, and have absolutely no impact on ch's. lance

Great mental attitude Ed, we call it living life between the hits. And don't TOTALLY forget the beast off cycle. Live your life between the hits, but ALWAYS be ready to do battle. On or off cycle I keep a supply of meds on hand since it can be tough to get immediate appointments with the doc!

Joe

Hiya,
It is now day 26 of my headache. Still feel the same either have a dull ache or agony. Have seen my GP a couple of times since was last on here. Was first given sumatriptan tablets which had no effect then the last time was given zomig nasal sprays that again had no effect on the pain but also made me feel sick. My GP has said that if the sprays diidn't work then he will refer me to a headache specialist! When the pain is really bad feels like the right side of my head is going to explode! Hopefully will get to see my GP on Monday.
Just want the pain to go away

Push hard for the 02 with your GP. Has been a life saver for many. Good luck!

Joe

suesue1000 wrote on Jul 31^st, 2010 at 5:07pm:

Was first given sumatriptan tablets which had no effect

Yeah that's a generally ineffective form of sumatriptan for CH. It's the injectible form that is very effective for aborting CH hits - if CH truly is what you're suffering from.

Help??

That is so weird... That's the same thing i said when i went to my 1st gp about clusters. He said "whoa.. I can tell you WHAT it is, and what is RECOMMENED for the symptoms and its treatment, But you have to help yourself improve". He was right.

Coach bill

Have gotta try & get some sleep cos av gotta phone my docs @8.30 2morro 2 get an appt plus av gotta fone work 2 say won't be in again. The pain is gettin worse!

Hang in there, SueSue. We're praying for you. lance

Ouch. :'( [smiley=hug.gif]

Joe

Hiya,
Saw a different GP today and he has given me Amitriptyline. Which have now looked up on the net and it seems to be a highly addictive anti depressant. I am not depressed! Told the doc I am not depressed. Supposed to take the pills for 2 weeks and then go see him. The last doc I saw said if the nasal spray didn't work would refer me to a headache specialist but the doc today said I have to try the new pills first. Plus have got a sick note for two weeks which didn't go down too well at work. My manager wants to arrange a meeting for me with occupational health.
So now am very stressed with tablets that I don't really want to take and worried about my job!
Have now had my headache for 28 days...........all I want is for the pain to go away!

Hi Sue sounds like you are still having one hell of a time!

Rock|Sue|Hard place = No Good   :-/ 

If I may ask , why did you wind up seeing another Doc. other than the one that said he'd send you to a headache specialist?

Also I think the "newer" doc prescribed the Amitriptyline to 1. help you get some rest (amitriptyline will help to knock you out at bed time) or 2. because he thinks your headache is a muscle related issue (amitriptyline is a muscle relaxant). 

If I were you I'd try very hard to get back into see the 1st Doc who spoke of a Headache specialist, you just can't keep this up, it is endangering your lively-hood and you need to tell the Doc. about that fact.

Another suggestion would be to seek out a firehouse near you and ask to use their O2, I wouldn't give any more details to them other than "Cluster headache" and see if the O2 helps relieve your headache.  Don't get me wrong I don't think that is what you have (if your pain has been non stop for 28 days that is) but you need to get rid of the pain so you can rest, O2 may do it even if it's not a CH.

I hope you find some relief soon!

suesue1000 wrote on Aug 2^nd, 2010 at 5:38pm:

Hiya, Saw a different GP today and he has given me Amitriptyline. Which have now looked up on the net and it seems to be a highly addictive anti depressant. I am not depressed! Told the doc I am not depressed. Supposed to take the pills for 2 weeks and then go see him. The last doc I saw said if the nasal spray didn't work would refer me to a headache specialist but the doc today said I have to try the new pills first. Plus have got a sick note for two weeks which didn't go down too well at work. My manager wants to arrange a meeting for me with occupational health. So now am very stressed with tablets that I don't really want to take and worried about my job! Have now had my headache for 28 days...........all I want is for the pain to go away!

Hi Suesue!
Just wanted to chime in here for a moment.  Amitriptyline is in a family of medications called tri-cyclics and is also marketed as a medication for chronic pain called Elavil.  Tricyclics (and Amitriptyline) used to be used at higher doses for an antidepressant WAY back when but that likely isn't why your dr prescribed them. 

Currently, at much lower doses (even about 10-20% of the dose used for depression), they are often used for insomnia, chonric pain, and migraine.  And they do work.  Some people with chronic pain syndromes such as fibromyalgia or migraine have great results.  Plus, it helps you sleep!

This is NOT a highly (or even lowly) addictive medication.  Some people may feel a bit groggy on it for a while and/or with dry mouth, but generally with low doses, it is a very well tolerated med.

Go on, give it a try.  Again, some people have great response to it although it may take a while to get the full effect...

Yeah, don't quit on it too soon. Having been a 23 year sufferer, with the last 3 years chronic, I have found a remission of sorts when I started a new regimen of Verapamil (400mg), amitriptyline (20mg), Vitamin B super complex, melatonin (15mgs) and high flow O2 with Monster energy drinks at the first sign of a hit. Something interrupted the chronic cycle and it all began when I started all of the above. I doubt it's enough by itself, but keep working to find the right mix that works for you. Blessings! lance

Hiya,
Finally got to see "Headache Specialist" today and am feeling so much better already! The docs that I had previously seen obviously had no idea what to prescribe for me and made me feel like I was being a burden! But today I was examined properly and am going to have a mri scan. Am annoyed scan wasnt requested sooner cos now prob have to wait a couple of weeks. The doc I saw today said I prob have got a variant type of cluster headache and have new pills. Have now been prescribed Prednisolone, Half Securon SR and Maxalt Melt wafers.  Have got to see him again in two weeks. Asked about oxygen but he just said was very expensive!

But already feel so much better because he actually understood what I was saying and didn't just keep asking me if I was worried or depressed like the other docs who don't seem to get the only thing that is worrying me or depressing me is my headache!

But now I have a reason to be positive!

suesue1000 wrote on Sep 14^th, 2010 at 7:14pm:

Hiya, Finally got to see "Headache Specialist" today and am feeling so much better already! The docs that I had previously seen obviously had no idea what to prescribe for me and made me feel like I was being a burden! But today I was examined properly and am going to have a mri scan. Am annoyed scan wasnt requested sooner cos now prob have to wait a couple of weeks. The doc I saw today said I prob have got a variant type of cluster headache and have new pills. Have now been prescribed Prednisolone, Half Securon SR and Maxalt Melt wafers.  Have got to see him again in two weeks. Asked about oxygen but he just said was very expensive! But already feel so much better because he actually understood what I was saying and didn't just keep asking me if I was worried or depressed like the other docs who don't seem to get the only thing that is worrying me or depressing me is my headache! But now I have a reason to be positive!

Oxygen is the cheapest abort goin.  Your Doc. steered you wrong.

           Potter

You are in the UK correct?  Must be some Brits around here somehwere that can help you.

'darlin

Yeah am in UK. Feeling really tired! Got to get sleep as have got a long term sick meeting with my manager tomorrow!

Suesue,

Glad you've finally received medications that work.  We know that can be a big relief.

You might want to give the folks at OUCH-UK a call on their "Help Line" about how to get home oxygen therapy.  See the following link:

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They can also give you the ammunition you need to call your last headache specialist and have him order the home oxygen therapy. 

As Potter says, oxygen therapy (even in the UK), is the least expensive and most effective acute therapy for cluster headache and it has no side effects.

You can also give him the following link to the European Federation of Neurological Societies (EFNS) standards of care and guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.

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

As you can see at this link, oxygen therapy at 15 liters/minute is at the top of the list as the first abortive of choice in the acute treatment of cluster headache.

Take care and hang in there.

V/R, Batch

Have had 2 give up work cos headaches still not under control and couldn't give them a date that I could start back! Saw specialist today and he's put me back on steroids even though last time was on them my white blood cell count went through the roof and is still high! The steroids did sort of help last time cos had less headaches and pain wasn't as bad but I wanted to eat all the time and went up 2 dress sizes in 2 weeks! But the good news is my MRI scan was clear! Just getting seriously fed up with my headaches!

Yeah, seriously fed up with the headaches is where most of us live, too. It's not such a bad place, though. It gets the dander up and puts us in a fightin' mood, all of which is better than depression. Keep working for the O2-it is the best universal abortive out there. And there's other stuff. Read archives, past threads, everything, and make a list of whatever you haven't tried that has worked for someone. And give clusterbusters a looksee. Who knows? Anyway, thanks for keeping us up to date. Keep the faith. lance