Hi, this is my first post here after reading a bit on the boards for the past few weeks.  I noticed that there isn't a lot of talk about the cost of treatment, probably because most of you are insured.

Unfortunately I don't currently have health insurance, so I've never been able to seek treatment for my headaches, but they have gotten to the point where they are too debilitating for me to function and I feel that I finally need to seek some sort of treatment.

They first started when I was a teenager, 17 or 18 (I am 25 now), and only occurred once a year, always in the spring, and only for period of two to four weeks at a time.  This wasn't too long so I pretty much just dealt with it.

For some reason they've come back much stronger this year in the late summer/early fall, and have been persisting for almost three months now.  From what I've read (and someone correct me if I'm wrong), most here have bouts lasting for a month to two months, and it would seem that three months is longer than usual for episodes to last.  There is no pattern to which they occur, either.  They are entirely random and can pop up at any time of the day or night, and frequently wake me when I'm sleeping.

I'm finally willing to seek treatment, but the only thing holding me back is the cost.

So here are my questions.

1. Would it be better to visit a clinic, rather than the ER?  Does anyone have any recommendations on any clinics to look into visiting in the Detroit area?

2. How much would I be looking at when it comes to the cost of the prescribed treatments, not including the doctor visit?  I've noticed that oxygen and sometimes tryptophans are prescribed.  Are these medications expensive without health insurance?  Are there cheaper, generic alternatives to some of the drugs that are commonly prescribed?

3. What kinds of results will I see?  I realize that everyone will respond to treatment differently, but is it likely that treatments will actually be very effective in combating the pain before or during the episodes?

I'm asking all of these questions because I am currently unemployed and it is very likely that I will have to go into debt to pay for any sort of treatment.

Sorry for the long post, but thanks in advance to anyone who can provide me with any sort of information that will help me out.

edit; Oh, sorry if this should have been in the Medications,  Treatments,  Therapies section.  I wasn't sure if it should be here or there.  If a mod wants to move it that would be fine... thanks again guys.

Hi Mark,

I am new to this site but have had clusters for 12 years.  I wasn't diagnosed until about 2-3 years ago.  I was to several docs and was told it was allergies, sinus infections, etc.  I was in the same boat with no insurance years ago.  I was then told migranes.  I was prescribed maxalt and was taking sometimes 4 a day.  Very expensive and had to pay all out of pocket.  I was miserable, no sleep, in so much pain, and no money.  I couldn't afford anything.  It got so bad I went to the pharmacy for help.  There are companies out there that can help.  Merck gave me all the pills I needed.  Several years later I went into a cluster for nine months.  The longest ever.  Thats when I finally went to a Neoro.  I found so much more info about these nasty things.  Who knew that drinking brought on more!  Wish I was diagnosed properly in the begininng.  It would have saved me a lot of pain.  I am now on the injection and Verapamil.  Use some O2 and am going to try Red Bull next.  I am currently in a cluster.  Anyway, sorry about the long story.  Just wanted you to know that I understand what you are going through.  Its tough and really hope you get treatment.  It helps A LOT!  Stay on this site also.  I find it very helpful.  Good luck to you and hope more people post with suggestions.  I know I just totally rambled!  Sorry!   ;D

MarkO wrote on Oct 4^th, 2010 at 9:38pm:

I'm finally willing to seek treatment, but the only thing holding me back is the cost. So here are my questions. 1. Would it be better to visit a clinic, rather than the ER?  Does anyone have any recommendations on any clinics to look into visiting in the Detroit area? 2. How much would I be looking at when it comes to the cost of the prescribed treatments, not including the doctor visit?  I've noticed that oxygen and sometimes tryptophans are prescribed.  Are these medications expensive without health insurance?  Are there cheaper, generic alternatives to some of the drugs that are commonly prescribed? 3. What kinds of results will I see?  I realize that everyone will respond to treatment differently, but is it likely that treatments will actually be very effective in combating the pain before or during the episodes? I'm asking all of these questions because I am currently unemployed and it is very likely that I will have to go into debt to pay for any sort of treatment.

1- If you have a previous diagnosis of CH an emergency clinic may be able to get you a prescription at minimal costs.
Bob Johnson posts a list of the tried and common meds used. Search his posts.
I would think it fairly easy in the detroit area to get some medical assistance. Others will chime in.

2- Oxygen is the second least expensive abortive. You can purchase or lease welding oxygen tanks at an auto parts store or welding supply house. You can make your own inhalation device with a cardboard tube and a plastic bag. The regulator can be sourced from somewhere easy enough all for possibly less than the cost of a DR visit. Lots of info here on oxygen use and purchasing.

     Tryptamines in the form of natural substances like Rivea Corymbosa seeds are the cheapest by far and can be purchased on line. See clusterbusters.com for more info.
One could treat themselves for well under the cost of a decent meal at a nice eatery, with the seeds.

Most prescribed meds are from fairly to ridiculously expensive.

3- Oxygen helps about 80% of clusterheads immensely. (the rest of us dont do it right)  Same with the Cluster Buster  medicines.

Most of the treatments can be a crap shoot and a lot of trial and error.
Many find their magic a few dont. Hope you do.

You will need to see a Neuro or 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 specialty 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.


In the Mean time...
See if you can get on some kind of medical assistance program in your area, this can help with the cost.  Some of the medications especially Imitrex can be VERY EXPENSIVE!  If your Doc gives you a script for imitrex you can go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE if you are without insurance they will help get you your imitrex for little or no cost.

Whilest you're waiting to get into the Neuro or your regular doc here are a few over the counter helpers:

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.  ** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

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.

Hot/Cold Compresses Depending on your preference can help as well.


Make sure you start a headache journal, you can make your own, here's what you will need to note on it.

Date:      
Time of Day of CH hit:   
On pain Scale 1-10 10 being highest what is your pain at?
Duration of Headache:
Symptoms that come with your Headache:
What, if anything you tried to get rid of HA:

You can make up your own HA Journal and if you get more than one in a day use 1 piece of paper/page per day, or you can use MS Excel for this.

Uhm, this may sound dumbheaded, but how do you know you have CHs? I'm not trying to say you don't, but there's no mention you have been diagnosed, or took the quiz on the left. Since other conditions can mimic CHs but have really different treatments, Ginger is right on target: you really need to see a headache specialist. Family, friends, church, civic organizations...all can sometimes help with initial resources to get you started. Nothing to mess around with. Prayers are with you. lance

Mark..I'm sorry you are suffering and hope you find relief soon.  There are numerous social service organizations in the Detroit area.  Two places to start would be your local Dept. of Job & Family Service (some states call them Human Services)  You may be eligible for medicaid or a number of other programs that can help with your medical costs.  They may also have job training programs to help re-establish yourself in the job market, if that's something you are looking to do.  Also, contact your local community action agency.  You can find one in your area by going to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE;  Many have prescription assistance programs, medical clinics, etc.  Even if your local caa doesn't have an Rx program, they have other programs that could help you with rent/mortgage, utilities, food, and other emergency services, etc...that would free up money for your doc visits, meds, etc.  Many of the drug manufacturers offer prescription assistance directly through them.  Once your treatment meds have been established, you can go to the manufacturer website and see if they offer any assistance programs.  Your local DJFS or CAA may be able to help you with the application process.  Also ask DJFS or CAA if they offer Benefit Bank services.  This is a program where after an initial interview session all your information is entered in a database that then gives you an entire list of area programs/services/resources you may be eligible for in your area.  You could also contact your local Salvation Army and United Way.  Look in the yellow pages under social service organizations for other resources.

Beginning Nov 1st the federal HEAP (Home Energy Assistance Program) will begin.  This program, offered thru your CAA, can help you with your winter heating bill.  It can pay no matter how you heat your home, gas, electric, propane, fuel oil.  Eligibility is based on your household income, and you can be a homeowner or a renter if the utility is in your name.  They also offer weatherization programs where crews will come into your home and completely make it more energy efficient for free!  Most people see a 25% - 30% reduction in their home heating bills (and summer cooling too).

DO NOT be embarrassed or feel ashamed to ask for help!  These resources are for everyone.  (The ones who should be ashamed are those who abuse the system and live off it).  We've all come upon hard times at one or another in our lives.  These programs are meant to give a hand up, not a hand out.  There are many, many families receiving assistance who never thought they would be in that position.  You are not alone and that is the purpose of these programs, to help those in need.

Good Luck and I wish you the best. 

P.S. Definitely take the advice of the experts here on welding O2 and red bull!  Cheap, effective and will hopefully get you through until you're able to get into docs, prev meds, etc..

I can't add much to what was already said except $27 or so for an O2ptimask from the CH.com store (on the left) is very inexpensive for a mask that will make a tremendous difference for you in oxygen therapy.

Jerry

Hello,

Imetrex 270 for 4 shots
preds   10 bucks
prevents (topamax) 50 bucks
oxygen setup around 150-200

this is my method. 02 =20-copay
rc seeds = 15 bucks
cluster free days.... Priceless.....

By the way 3 months would be a easy trip for me. mine last anywhere from 4-5 months 8-)

coach bill

You may have read my previous posts ... in case you didn't:

1. Mt. Dew (loaded with caffeine) or Red Bull (expensive)
2. Walk or some type of immediate exercise
3. Cold pack ... I use Bed Buddy because it forms to my eye which is where the pain is most intense and the blood vessles are closest to the surface. I keep 3 in the freezer at all times.

If that fails .... Immitrex injection and pray!

Go see a Neuro and get a firm diagnosis. Then make friends with his nurse! They can do wonders to help you get meds!

I've had cycles from 3 months to 15 months ... there is no logic here!

Be strong!

Red

Well thanks for all the help guys.  My episodes stopped a few days after I posted this thread so I guess I kind of stopped worrying about it for now, being incapable of seeking treatment.

Anyway, they started back up again a week ago and I was able to see a few doctors.  I have insurance again, but only for a few months, and I was "officially" diagnosed with Sinusitis.  I don't believe this to be the case, but my doctor refused to listen to anything I had to say about cluster headaches, and the symptoms for Sinusitis don't add up with the symptoms I've been having.

Anyway, I was prescribed a few things.

1. Esgic Plus--Did nothing for my pain, only made me tired/groggy/irritable.

Upon my second follow-up visit after my CT Scan (the results of which were normal), I was prescribed the following:

2. Arthrotec

A NSAID.  Has anyone taken this?  It says specifically not to take Diclofenac for cluster headaches in every bit of information I have about Diclofenac, so this kind of worries me.

3. Augmentin - antibiotics
4. Prednisone - corticosteroids

Does anyone believe these will help?

Thanks.

If it is CH, the steroids will probably help, but only while you are on them. For me, prednisone at doses as low as 30 mg a day provide complete relief. But as soon as I go off the steroids, if I haven't started any other prevent, the CH comes back with a vengeance. And you don't want to take steroids for any extended period of time as they are very hard on your joints and internal organs. 

While you still have insurance, read the previous post in this thread about locating a "Headache Specialist Neurologist."

GP's know very little about headache disorders, your garden variety neuros know only a fraction more. You need a doctor who has had extensive training specifically on headaches. It's your best chance for an accurate diagnosis, and an effective treatment regimen.

There are hundreds of headache disorders, many are unlucky enough to have a combination of several different disorders, CH and migrains etc., it takes a specialist to weed thru the symptoms and figure out what the problem is.

Wishing you some diagnostic luck. ;)

Joe

Thanks for the response.

I'm excited to potentially be free of them, if only for a small while.  I've been prescribed 10mg prednisone twice a day for 10 days. 

The joint issues is a bit worrisome for me as I lift weights five times a week, and quite heavy also, so the last thing I want is to be on a medication that is going to put me at risk doing something that I love.  To me the best treatment sounds like O2 therapy so I may look into that as soon as possible, as it would be free of any real side effects, which is my biggest worry with the drugs I've been prescribed.

Oh NOTHING compares to oxygen! I'm a 32 year episodic sufferer and oxygen has almost completely eliminated my use of imitrex. 6-8 minutes huffing 02 I'm pain free. And if you go the welders 02 route, it's dirt cheap.

Joe

Guiseppi wrote on Mar 4^th, 2011 at 8:49pm:

Oh NOTHING compares to oxygen! I'm a 32 year episodic sufferer and oxygen has almost completely eliminated my use of imitrex. 6-8 minutes huffing 02 I'm pain free. And if you go the welders 02 route, it's dirt cheap. Joe

Joe,

I just wanna say thanks for your glowing recommendation on the Oxygen.

The Prednisone proved to be completely ineffective--a few days after taking it, I started getting hits again.

Rather than bothering with my insurance and trying to get a prescription for oxygen, I ordered the mask on the ch.com website, the harbor freight regulator, and went and rented an 80cu oxygen cylinder from a local welding supply shop.

I've successfully aborted every hit I've gotten so far.

Again, thanks for all of the help =)

How cool is that? Another O2 success story.

Hi Guys,
soz to burst your O2 bubble but that line of treatment got me just as far as all the rest of them, nowhere. Have also tried the steroid thing, beta blockers, kudzu root etc etc. As you know we will go to ANY length to get rid of the screaming bitch trying to push our brain out through our eyeball with a hot needle. Have considered cutting off my left leg to alleviate pain in right frontal lobe. Have been having success with Imigran injections, tablets no good coz they take too long and dont always work. Only thing is I have had to exceed the stated dose by about 3 times and doctor and pharmacist getting edgy about supply. Have also been experiencing "rebound" headaches, apparently from the imigran where the remedy becomes the cause. Anyway am getting less and less releif from them as this cluster rolls on, about 1 month now5-6 attacks a day/night, sitting here waiting for the next one and wondering how bad it will be? Booked myself into hospital on Friday night because I was no longer able to manage the pain. They stuck me on a Zemetil (?) drip overnight and discharged me in the morning with no medication or sunglasses, yay public health system!!
Good news though folks (maybe), I have been taking magnesium supplement 500 mg a day for the last 3 days and am having my first pain free morning for a month after only one attack with imigran jab overnight. Hang in there guys, god I feel better reading your experience and knowing this insanity is not all mine.

Hi Sail Atea

When you tried oxygen did you use a high flow rate (15lpm or higher) and using a non-rebreather mask? It's common here in NZ (and elsewhere) for them to try oxygen at a much lower flow rate and using a standard rebreather mask or nose canulas. Similarly for those who found it didn't work, increasing the flow rate is often what is needed to make it work too.

Have you tried verapamil or lithium as a preventive? Again many doctors are likely to use far too low a dose that is not effective. For verapamil a typical dose is about 36-480mg a day but some go to over double this.

It is possible to get good treatment for CH in NZ, but it helps to be as clued up as possible to help guide your treatment.

Welcome to the board Sail, Mike makes some great points about 02. Used incorrectly it's worthless. Check out this link, gives you the nuts and bolts for 02 therapy. My aborts run about 6-8 minutes:

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

Since the magnesium is starting to help, read the thread in medications section, "123 pain free days and I think I know why" Batch is onto something with his Vitamin D-3, fish oil, magnesium supplements, seems to be helping a lot of people on the board.

Lastly read this link. It details the "alternative" treatments available outside of mainstream medicine. They are producing some amazing success stories, especially for some of our more difficult cases for whom nothing was working.

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

Welcome to the board, hoping we can help you get a handle on the beast.

Joe

MarkO, that is great news. 02 has tamed the beast for a great many sufferers, glad you've got him on retreat.

joe

I am new to the board and have not tried o2 but am looking forward to it. I would like to add to this drug subject elavil. It broke me off a bad imitrex rebound thing i was on for several days.I was up to 4 a day and it stopped em right away. It did leave me very tired and depressed but i was at 25 mg. When i cut them in half some headaches did comeback but not severe just the throbing neck and a little in my head but never made it to my eye. If i went back to the 25 mg i was fine the next day but tired and depressed. I bring this up because i loose my insurance all the time and this will probably be my fall back drug as it is cheap(100mg for $1 online) compared to the others and my imitrex has gotten real low

coach_bill wrote on Oct 7^th, 2010 at 8:58pm:

Imetrex 270 for 4 shots

OMG REALLY ?? #thanks god for the NHS#