I'm 32 years old I've suffered from these cluster headaches for about 10 years now.  It's been mis diagnosed my entire life.  I've even had my upper teeth removed because it was diagnosed as an impacted tooth through my sinus cavity causing a sinus infection, that was 5 years ago, and they came back 6 months later.

I find the scale system on here doesn't fit me, I get them for about 1 month a year, but when I get them, I want to seriously shoot myself, they are so painful I can't even describe it. 

I started to get them 2 days ago really really intense, I have no insurance because I'm between jobs so I tried toughing it out, today I made the mistake of going to a doctor and what am I told?

THEY REFUSE To prescribe me with any medicine until I get a catscan, and they know I don't have insurance, that's ridiculous isn't it?   Any advice on what to do, I cannot live like this when I get this ridiculous pain and now I"m getting them when I go to sleep

I haven't slept in 24 hours, but when I tried to go to a doctor today, I'm told I can't be prescribed medicine until I get a catscan, however you spell it.  I told them the exact symptoms of a cluster headache, they say it sounds like one, but they have to be sure before they prescribe anything. 

They also told me to take tylenol, that'll alleviate the pain.  Sure it does, I can take an entire bottle of tylenol (not that I would) and the headache would laugh at it, over the counter drugs like that don't do a thing to it. 

I'm getting absolutely fed up with the idiot doctors in this country, it costs me 60 dollars to go to a doctor that wastes my time telling me that I need a catscan.

I told him the exact symptoms of a cluster headache which I don't need to repeat here because I"m sure everyone knows them.

I just need some advice, going to the ER when I get one cost me 1200 dollars for 5 minutes the last time I went there, I can't afford to keep paying for it. 

Not to mention the last 3 times I've been to an ER they told me it was a sinus infection and they give me antibiotics which do nothing, I have to suffer with nothing to help take the pain away for months, I'm really getting fed up with this, if doctors are this uneducated in the area I live in, what are they doing charging so much money to visit them?

As a general rule cat scans/mri's are always ordered to make sure it's not something life threatening like a tumor.

I recommend getting on public access or medicaid and then seeing a headache specialist or at minimum a neurologist.   Again they will most likely order a cat/mri scan before prescribing anything given that we are dealing with the brain.

For natural fixes in the mean time try chugging a redbull when you feel a hit coming on.  At night before bed take a melatonin or over the counter allergy pill to help get you through the night and help avoid a CH hit.

Stay away from alcohol as it is a trigger. 

You can also try the herb Kudzu many have had good results using this as an aid to preventing a CH hit.

Wishing you PF Days and Nights and Good Luck!

Ditto what Ginger said, and while it does suck, if this is the only way you'll get treated, I'd say do it. Hospitals will usually consolidate bills for one monthly payment you can afford. Talk to the social workers there who can intercede for you with billing. At one point, my daughter had run up over a million dollars in bills. Children's Hospital in Cinci just finally wrote it off. Up until then, we gave them $25 a month. You need O2 and a good preventative. Don't let a little ol' thing lak money keep you from the help you need. Blessings. lance

A good idea to rule out the more sinister conditions but it sounds like you already know what you have...and don't have the dough to get one anyways. The low budget treatments:

Energy drinks, Rock Star, Monster, any containing the combo of caffeine and taurine. Chug them fast at the first sign of an attack. Will abort/reduce for many.

Welding oxygen. Huffing pure 02 will abort an attack for me in 6-8 minutes. Read the oxygen info link on the left to see how it's used correctly. Welding oxygen is a cheap alternative to medical and is the same stuff, just different rules on how the tanks are handled.

Go to this site     Clusterbusters.com   to read up on "alternate" treatments. Good luck.

Joe

that doctor sounds responsible to me.

Because symptoms of cluster can be a mask for other, quite serious disorders, it has quickly become common to use a scan to rule out some of the other sources of the headache.

In fact, the actual positive findings are very limited (see following) but--in medicine, in any science, negative findings are important.

We often make decisions about the level/intensity of treatment we select based on our $$-supply. What we can't negiotiate very easily, since we lack power to influence his professional power, is the doc's demand that we use a specific treatment approach.

You have a few optionss: 1. find another doc; 2. offer to sign a waiver of responsibility for not having a scan (with the present doc); 3. contact the hospital to see if they have any info on low cost/free clinics which might be able to assist you; 4. try alternative treatments, such as melatonin to abort/reduce attacks; 5. BUT don't get onto large & continuing doses of OTC pain meds--they often increase the problem!
=======

Cephalalgia. 2008 Sep 2. [Epub ahead of print]
What happens to new-onset headache presented to primary care? A case-cohort study using electronic primary care records.

Kernick D, Stapley S, Goadsby P, Hamilton W.

St Thomas Medical Group, Exeter, UK.

In the UK, 4% of general practitioner consultations are for headache, yet the natural history of these presentations is unknown. The objective of this study was to describe the outcome of new headache presentations to the general practitioner. This was a prospective case-control study in adults over a period of 1 year using data from the General Practitioner Research Database, UK.
RECORDS OF PATIENTS WHO PRESENTED WITH PRIMARY HEADACHE (MIGRAINE, TENSION-TYPE HEADACHE, CLUSTER HEADACHE) OR UNDIFFERENTIATED HEADACHE (NO FURTHER DESCRIPTOR) WERE EXAMINED FOR THE SUBSEQUENT YEAR FOR SUBARACHNOID HAEMORRHAGE, PRIMARY BRAIN TUMOUR, BENIGN SPACE-OCCUPYING LESION, TEMPORAL ARTERITIS, STROKE AND TRANSIENT ISCHAEMIC ATTACK. WE IDENTIFIED 21 758 PRIMARY HEADACHES AND 63 921 UNDIFFERENTIATED HEADACHES. THE LIKELIHOOD RATIO WAS 29 (9.9, 92) FOR A SUBARACHNOID HAEMORRHAGE AFTER AN UNDIFFERENTIATED HEADACHE AND INCREASED WITH AGE. THE 1-YEAR RISK OF A MALIGNANT BRAIN TUMOUR WITH NEW UNDIFFERENTIATED HEADACHE WAS 0.15%, RISING TO 0.28% ABOVE THE AGE OF 50 YEARS. FOR PRIMARY HEADACHE THE RISK WAS 0.045%. THE RISK FOR A BENIGN SPACE-OCCUPYING LESION WAS 0.05% FOR AN UNDIFFERENTIATED AND 0.009% FOR A PRIMARY HEADACHE. THE RISK OF TEMPORAL ARTERITIS WAS THE HIGHEST OF THE CONDITIONS STUDIED, 0.66% IN THE UNDIFFERENTIATED AND 0.18% IN THE PRIMARY HEADACHE GROUP.
Accepting the limitations of this approach, our data can inform management guidelines for new presentations of headache in primary care and confirm the need for follow-up, even if a primary headache diagnosis is made.

PMID: 18771496 [PubMed]

I've never had a CAT/MRI, and have had CH for 30 years. I guess back when I was diagnosed by a specialist 22 years or so ago, they didn't have the technology or weren't so CAT happy.

There's this orthodoxy about "oh you simply MUST have a CAT scan!" for the reasons outlined above, but while you're deciding whether to buy into that, the non toxic/non idiot doctor treatments that Giussepi mentioned (and that I'm echoing here) ARE proving to be some of the most effective, if not THE most effective, and you could start pursuing those right now.

Whether you get prescriptions from a doc or not, you'll likely want to get some O2 for abortive right away and use it in the newer, more effective manner as outlined in the oxygen info link to the left of this page. Lots of CHers here get their o2 cheap from a welding supply place without prescription (it's reputed to be the exact same stuff as the medical O2).

Then there's the whole clusterbusting preventative approach that is focused on over at clusterbusters.com. Here's a video talk on that subject.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

[Edit: if the doctor you went to wasn't a headache specialist you might wanna lose him anyway. When it comes to CH, there are unfortunately a real profusion of idiot doctors out there]

Only thing I have to add is that COBRA is much more affordable than you think. If you had insurance from your previous employer, you are eligible for COBRA, which is an extension of your insurance available to you at a cost. At this time, 60% of that cost is covered until the current government reinvestment act, which makes it a helluva lot more affordable than before. If you still are within the time frame to sign up for it (I think it's up to 90 days after your last day with your employer), GET it.

The investment is very wise, not just because you'll have the coverage but because here's the other kicker: the lack of continuous coverage may count against you as your clusters can be considered a pre-existing medical condition when you get insurance. The law eliminating that pre-existing clause doesn't go into effect for awhile.

Thank you guys, I actually slept last night without getting one.  I used that allergy medicine, and took melantonin before sleeping.  It seemed to work this time though cluster headaches are weird you can really get them at any time.

I just stocked up on red bull and have them ready to slam when I start to feel one coming on.

I read that if you take cold showers when you get them it can make them go away faster, as it has something to do with lowering your body temperature. 

For some reason those 12 hour extended release allergy medicines help me for sleep

The other thing is, shouldn't a doctor know that it isn't something else?   Just by the fact that I've had them for at least 10 years now, I had a catscan 10 years ago when I had insurance.  I'm going to try that waver thing.  I only get them 1 to 2 months out of the year, I just hope next year I have insurance at the time.  They have this amazing ability to always get me when I'm in between jobs, so I think I have intelligent cluster headaches, they know when to hit me  :D

If it was something more fatal it probably would of have killed me by now I'm guessing, though I don't know what can be worse than these headaches

F0l2saken wrote on Jul 23^rd, 2010 at 2:12pm:

I read that if you take cold showers when you get them it can make them go away faster, as it has something to do with lowering your body temperature.

Deep breathing cold air with your nose right on the air conditioner blower vent is something that will abort an attack for some of us some of the time if done right at onset.

I hope you'll re-read Giussepi's advice on O2 and clusterbusters and look into that right away. Red Bull is a great supplemental item to have along with your O2, but O2 is still a more powerful abortive when used correctly.

I too have been suffering for 32 years, Undiagnosed for first 10.  I have never had a catscan or MRI for the headaches. My regular dr. sent me to a neurologist who knew right away (as did I) what was happening. If you don't have the money for a catscan, maybe try a neurologist is is more familiar with the classic symptoms.

F0l2saken wrote on Jul 23^rd, 2010 at 2:12pm:

Thank you guys, I actually slept last night without getting one.  I used that allergy medicine, and took melantonin before sleeping.  It seemed to work this time though cluster headaches are weird you can really get them at any time. I just stocked up on red bull and have them ready to slam when I start to feel one coming on. I read that if you take cold showers when you get them it can make them go away faster, as it has something to do with lowering your body temperature.  For some reason those 12 hour extended release allergy medicines help me for sleep

I use the 24 hour tab of zyrtec / generic form cetirizine before bed at night, but then I suffer a from a few allergies too. 

I'm glad you found a little relief and some sleep!  ;)

Dude, skip the doctor.  (yes, i said 'dude' :P)  As others have said, I too have skipped the doctor and have saved enough money to buy anyone who reads this and reminds me at the clusterbusters conference next month a beer :D

For others I may recommend something else, but what guiseppi said is very good sir.  Caffeine for daytime.  Melatonin etc for nightime.  Go to the START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE and order some RC seeds.

Additionally I would experiment with cold or hot showers, try a blast of air conditioning/head in the freezer, vigorous excercise, etc.  There are threads for all these things here.  Keep reading.

Hang in there daddy-o.  Together most of us fight this thing to a draw.  Initially it will take very active participation on your part to manage your pain and medicines whether you use caffeine, psilocibes, oxygen etc. >:(  You can do it and we can help! ;)

--Shaggy :)

Of course O2 is the best thing out there but I also like to plant a huge bag of frozen corn over my face with a paper towel in between. Then I saw a recipe for a 'slushy': 2 parts water to 1 part rubbing alcohol, then freeze. Molds over the face even better than the corn.

Good luck and PF days and nights to you.

you didn't mention in first post you already had a catscan even if it is ten years ago.this should do the trick as long as nothing has changed significately in your pain.
From my experience as i have changed neuros,every one of them accepted the older catscans and just wanted to see them for their own reassurance.
did you try to show him that catscan?
work your way through this and get a proper diagnosis even if you are sure it probably is ch.
i insist on that as we are in a topic of help and support but still just sufferers..

pf wishes

Stay out of the ER. Go to the firehouse and beg O2 until you get your own O2. Forget tylenol. Water, coffee, Energy Drinks , (I found some at the dollar store that worked) , ibuprofin (not on an empty stomach).

Quote:

ibuprofin

No, no, no.  >:(

My Neuro said to chew thats right chew 2 Excedrin to abort a
CH.  Bet that tastes gr8!!!   Worth a shot...  Cheap that's
for sure.

Boski

Chewing the 2 excedrin might work, but let's take a closer look, shall we?? :D

Extra strength Excedrin is 250mg acetaminophen, 250 mg aspirin and 65mg caffeine.  So of the 3 components only the caffeine has been effective for most of us here.  Aspirin and acetominophen are ineffective for most. 

Sooooo, (here's my point) go straight for the caffeine like the rest of us, it works.  According to my internet search:
8 oz brewed coffee: between 95-200mg caffeine.
pepsi/coke: 35-40 per can.
Caffeine pills, nodoz/vivarin: 200mg

Mayo clinic says this amount of caffeine in each drink:
AMP, 8.4 oz (250 mL) 74
Enviga, 12 oz (355 mL) 100
Full Throttle, 16 oz (480 mL) 144
Monster Energy, 16 oz (480 mL) 160
No Fear, 8 oz (240 mL) 83
No Name (formerly known as Cocaine), 8.4 oz (250 mL) 280
Red Bull, 8.3 oz (250 mL) 76
Rockstar, 8 oz (240 mL) 80

Yeah, slam a "No Name" at the next onset and you can stay awake for days. :P

Caffeine is definitely one of my main weapons and I used to be an excedrin guy.  Once I came to this site I modified the medicines to just use the caffeine, not the other stuff. ;)

Good luck!

--Shaggy