Ok, here's what is going on. I am about 99% sure I suffer from Cluster headaches though I have not received an official diagnosis. Looking back, I have suffered from these headaches  for the last 10 years. I have tried figuring out what these headaches were forever because they would show up and just leave out of the blue. They always hit around late fall and last a couple months then will disappear for a year or more. I went to the doctor about 5 years ago and they did an MRI and couldn't find anything wrong, but they disappeared after that for a couple years so I didn't think any more of it, but over the last few years, they return without fail every year. This last week has been as bad as it ever has been. 4-5 a day and the worst pain ever!!! They always affect my left side, my eye swells up and tears/gets red. My left nostril will plug up, then start draining, then plug up again. My upper jaw also starts screaming at me! I pace, bang my head against the floor, whimper, try putting frozen vegetables on my head. I have tried Aceteminophen, Ibuprofen, Excederin Migrane/tension headaches and nothing, I mean NOTHING helps and all I am doing is damaging my liver. For a while I thought it was a reaction to MSG, but they still show up when I am 100% certain I am MSG free (I still think it triggers them). My daughter gets scared to see me writhing in pain and I am worn down and out from not sleeping. I dread the tingling I feel on my left side because I know one is coming and there is nothing I can do about it! Without rambling on and on I have researched cluster headaches extensively now and am certain that is what is going on.
I just made an appointment with my doctor tomorrow because I cannot deal with this any more! So what I am asking from the group is what questions should I ask and how can I make them lean toward this diagnosis? I do not want to go months and months of misdiagnosis because they think it is something else.

I just don't know what to do anymore and I can't deal with this horrible thing. My whole family is affected, but they have no idea how excruciating these are. I am happy that there is an entire support group for this and look forward to participating!

Alex

Hi Alex

I'm new here too but I am sure you will get some very good advice from some of the old hands here.

I've been an expert for about 2 weeks now in this field and I suspect you do have the beast in you.

If you've got a Doc appointment tomorrow I am afraid that unless you are very lucky the Doc might not have a clue what you're talking about, I would advise that you say you have researched the subject and  come up with a contender (cluster headache) and take some short literature to demonstrate why you believe this.

If you have a printer, print out from;

google

"nhs cluster headache treatment" &

"IHS Classification Cluster Headaches"

This is a very basic brush over what the problem is but there is no point going in with reams and tomes of medical literature, you're job is to convince the Doc to refer you to someone with more than two weeks expertise.

Some treatments / meds work on some not others, symtoms vary from sufferer to sufferer (but follow a recognisable pattern ) Not everyone's experience is the same (except that when it gets bad you cannot imagine anything worse)

I am seeing my Doc this coming week and am trying hard to contain my anger, I have a condition of extreme bad headaches for over 12 months (every day) thanks to the 6 -10 Docs I've seen in the past year I was up to the daily limit on Paracetamol,  Asprin and Ibuprofen along with Tramadol (100mg) and Codeine (100mg) and Amitrptaline, I was a zombie, a zombie in extreme pain.

With good advice from here I quit everything except the Amytrip ( I upped that without ref to Doc),. The pain is slightly better now and I am beining to function again.

Over the counter and normal pain meds will not help you, you need  specialist help, good luck!

Alex,
Well written post. We've all been there and still are.
Where in the world do you live.
There are people here who might be able to help you find the right medic. It must be a headache specialist. Your family Doctor will be unlikely to get you the help you need.
Keep the faith. There is hope.
Peter.

I live in Minnesota

Alex,
If you look at the left of your screen, towards the top of any page, you will see a tab for "where we live". There are 86 registered members in your state. Maybe one of them lives nearby and can help.

You should discuss the possibility of getting prescription home O2, when you are with your Doctor tomorrow. The pain relief is remarkable.
Best of luck. Keep updating here. It's the best place for advice and support.
Peter.

Alex,
Hopefully your doctor tomorrow is familiar with the knowledge listed among the tabs on the left side of your computer screen.  You should be familiar with all of this info as well.  If your doctor is not a headache specialist, ask for a referral.

Preventative, transitional and abortive medication categories are all important discussions for tomorrow.

Let us know how your appointment went.

Good Luck ;)

-Gregg in Las Vegas

Doctor appointment went well. He diagnosed me with cluster headaches. Going to try Imitrex 1st to see how that works. Just having troubles now finding a pharmacy that has it in stock...

Hi Alex

Good to hear it went well, getting the correct diagnosis is half the battle won.

You shouldn't have any probs getting hold of the meds, Imitrex is Sumatriptan also goes by trade names Treximet, Imigran, Imigran recovery.

I hope you get on with it and you get some relief at long last, best of luck and don't be slow at going back to the Doc if it doesn't suit you.

Alex M wrote on Jan 23^rd, 2015 at 2:53pm:

Doctor appointment went well. He diagnosed me with cluster headaches. Going to try Imitrex 1st to see how that works. Just having troubles now finding a pharmacy that has it in stock...

Whilst imitrex is great for aborting a CH when you get one, a preventive should also be used to cut down how many CHs you get. So you should be on something like verapamil, lithium or topomax.

I finally started verapamil last week and it has completely stopped this episode for me, thank God.

I finally got my Imitrex yesterday, but I have not had a headache to see how it works yet(I'm not complaining!). We discussed getting High Flow Oxygen and a preventative medication as well, but I want to try one thing at a time rather than throw a whole bunch of stuff at it and have no idea what works. Thanks to everybody for their comments and support! It is nice to know I am not alone!

Alex M wrote on Jan 25^th, 2015 at 12:29pm:

I finally got my Imitrex yesterday, but I have not had a headache to see how it works yet(I'm not complaining!). We discussed getting High Flow Oxygen and a preventative medication as well, but I want to try one thing at a time rather than throw a whole bunch of stuff at it and have no idea what works. Thanks to everybody for their comments and support! It is nice to know I am not alone!

You should be able to try oxygen / imitrex / preventive at the same time as you will be able to tell what is working when. If the preventive is working then you'll see you'll be getting less CHs, which should be obvious once you review your headache diary. When using an abortive use either oxygen or imitrex, then you'll see within a few minutes if the abortive you are trying is working as the CH you have gone will have gone.