So,
I am in the middle, or beginning of my cluster cycle... who knows what point it is at. I am starting to experience upwards towards six attacks a day. I can only abort two of them in a 24 hour period with my Imitrex injections. I had a really bad one tonight, it just would not go away. The pain was so bad I went to the ER to get some oxygen since it has not been delivered to me at home yet. The check in nurse was not only rude to me but threatened me if I did not open my eyes and answer her questions she was not going to check me in. After I complied with the pain getting even worse because the light was affecting me with my eyes open, they left me withering away on a hospital bed for over thirty minutes, no oxygen not even any one coming in to check on me. I was drenched in sweat, tears steadily flowing from my eye on the affected side and snot running down my face from my nose. The room they had put me in had all the lights on and the tv was blaring. I got up and stumbled to the nurses station and pleaded for oxygen and was told to go lay down and wait for the doctor. At that point I was on the verge of getting violent and left the Hospital and came back home to ride out the attack. The attack kept a strong grip on me for over three hours. I am going back to the hospital and am going to speak to the administration officials about what or what not they had done for me. If i do not get satisfactory results I will even be tempted to see what an attorney thinks. I was completely on the verge of just swallowing the nearest bottle of pills to end my misery once and for all. I am so tired of living with this pain. I can't do it for much longer and it seems that there is little to no help for me what so ever!

Good Morning Adam,

   Sorry you have to be here, but you're in the right place. There's a ton of information on this site and hopefully some of it will bring you some relief. There are plenty of folks here with a lot of knowledge to share.

  I reccomend you go to the "Medications, Treatments, Therapies" section of the board and take a look at the post "123 Days PF And I Think I know Why". It's a Vitamin D regimen alot of us are taking that is providing relief. All over the counter suppliments and relatively inexpensive.

Also chugging a RedBull at the first sign of a CH can take the edge off.

Others more knowledgable than myself should be along shortly to welcome you tell you about a myriad of other things.

Welcome aboard,

-dvb

Thank you Lydia and DVB!

I just got home from walking down to the neighborhood Pharmacy.

I bought two bottles of D3 5000IU $9.39 each and Buy one get one free of Omega-3/ 1000 mg. $7.29

I am taking them now and praying to god ( normally I am cussing him out ) that they work. I will continue to post my results. I am so glad I have found this site!

Glad to hear it Adam. Add Calcium Citrate (preferrably one with Magnesium and Zinc) and a Multi-Vitamin. After the first few days on it my CH became a little unpredictable (more frequent, but less intense). Didn't get my 3AM "wake up call" after day 3 or 4. Took a couple weeks to go completely PF and pass the beer test. Stick with it and I think you'll be happy with the results. Post any questions you might have (and any updates your progress)in the "123 PF..." thread, Batch usually  provides answers pretty quickly. Best of luck to you.

-dvb

btw, I lost my old wedding band in Penobscot Bay 2 years ago. I look forward to getting back up there to "look" for it....

Adam - don't forget to add the adjunct minerals (magnesium, zinc, boron, calcium). Otherwise the metabolism of the D3 will draw those minerals out of your bones and you'll get brittle.

Don't know on the multi.

I take 600mg of calcium citrate, 250mg of magnesium, and 50mg of zinc in addition to a multi.

Check the "123 Days..." thread for more specifics.

Thanks DVB and Brew... on my way to Wally World.

Hey, AdamT,

Your experience is typical, not atypical. Sad as that seems, it just means that you are your own advocate.  Frankly, I don't see that changing soon.  Having said that, these folks have experienced pretty much everything that is CH, and they have helped me get my life back.  CH? Yeah, still got 'em, even more so.  But the O2 has helped a lot.  And I stumbled on the split doses of sumitriptan from someone here.  When I was unable to get 4mg does, they gave me 6mg doses.  Didn't make sense, and now I am down to 2mg doses.  I have no idea if this makes any sense for you, but sometimes people have trouble when the dosage is high.  My best to you.  You are right...no one should have to deal with this. God and I are gonna have a chat one day. 

TJ

Cluster headaches reminds us of two things we'd rather not know: pain can be remarkably intense, and we're broken. I know of no religion that promises pain will become fun or our brokenness can be cured here and now. Certainly, Christianity does not. The promise is we can and will be made whole, with a deposit and guarantee here and now, for a yet to come moment when all is made well again.

In the meantime, we are given several tools to cope: medicine, knowledge, fortitude, faith, and for us above all, oxygen!

You need your own set up, not later but sooner. Do it right, get a good nonrebreather and a regulator that goes up to 25lpm, and do it before you bother wasting time complaining to hospital admins. Take care of yourself now and first. Second, get one of those docs to prex a Migranal nasal spray. It's not as fast as imitrex but for me anyway, lasts longer. Finally, review your med lists for dosage amounts. For example, most docs don't want to go above 240mg/day with verapamil, but most of us find relief in the 460-960mg/day range.

Hang in there. God has not abandoned you nor have we, the hospital routine has. As Lydia said, nothing new, nothing to see, move along. God bless. lance

We're all with you Adam.  I can't tell you the emotional relief I felt when I found this site during my last episode.  Just knowing I could vent to those who "get it" is a huge help...and I would venture to say could help you on the depression side!

That said, I am episodic and live in dire fear of going chronic...for all the reasons you relate.  But know this...there is at least one person in this universe of hell of ours that is thinking "Wow, if Adam can hang through this, then maybe I can too!"

My other tidbit of advice...don't wait for O2 to show up at your door.  Find out where it is coming from and go bang on their door!  Good advice to get an Optimask non-rebreather and high-flow regulator yourself...not too expensive online.  But call around to all the oxygen supply houses and "respiratory services" providers until you find the one your insurance company uses...then keep bugging them.  I now have enough tanks in my basement to start a nuclear war!

PLEASE!
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
==================================

It's curious that, considering the real complexity of your total medical history, and then the severe problems with the Clusters, that no one has suggested the value of working with a headache specialist. As we keep observing, neuros have so little training and experience with complex headache disorders, that searching for a authentic specialist is important.

So, if you have the option:

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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
===============
It's especially important to have a skilled doc on board because, I assume, of the range of meds which your other conditions require.