Hello CH members!.

I am SO happy to find others to share my experiences with!  NO one can possibly understand, and that is almost as frustrating as my cluster headaches!

I have had migraine headaches for 12 years now.  They began mild and progressed to severe.  In the last 2 years they became cluster headaches.  I have lost hope in my neurologist because I cannot find a medication to take the pain away. 

I have been on Topomax for 7 years in different strengths and will never go off in fear of dying of pain.  I have tried the following (spelling is optional!): vicoden, amatriptoline, blood pressure meds, percoset, DHE injections, Imitrex, Maxalt, muscle relaxers, NSAIDS and probably a few more in my bathroom arsenal that I have long forgotten about.

These CH's have made a permanent crease on my forehead in the last 2 years that I hate.  I reminds me that at any moment I could be hitting my head against a wall and crying and cursing in pain with no relief.  During my "episodes", my forehead skin also purses up in a bunch while my eye is puffy and droops and drains....yuck!

I have recently quit my job because stress makes these more frequent and I can no longer stand myself.  I no longer eat meat or drink alcohol in fear of triggering a CH.

I hope you all don't think I am complaining, I am just letting you all know that I understand your situation and hope to contribute and learn here! 

Thanks again for this forum!

SpringThyme ;)

Welcome to the nut house, yeah we get it! It's just a headache after all, take an aspirin and stop your whining! ;)

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Read this link. I'm a 33 year episodic CH sufferer. Oxygen has taken me from 90-120 minute rides, down to 6-8 minute aborts. It must be used correctly or it's worthless. Changing a lot of lives for the better around here. Cheap, no side effects, fast, portable, not much to dislike about it!

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Then check out this link. Non traditional methods of treating CH that are cranking out some pretty impressive results.

Are you working with a Headache Specialist Neuro? The vast array of worthless pain killers you've ben prescribed tells me probably not. Our experience here has been that's your best shot at an effective treatment regimen. GP's know very little about CH and your garden variety neuros just aren't that much better.

In your treatment section you mentioned BP meds, was that Verapamil? If so we have found most who were unsuccesful using it were at way too low of a dose. Some go up to 960 mg a day to get relief. Lithium is another great prevent to discuss with your neuro. At 1200 mg. a day it blocks 60-70% of my attacks and you'd never know I was on it if I didn't tellyou.

Was the imitrex you used in a pill or injection form? The pills are useless for most CH'ers as our pain builds too quickly for oral meds to be much use.

For now try chugging an ennegy drink at the first sign of a hit. Rock Star, Red Bull, any containing caffiene and taurine, will abort or reduce attacks for many.

Really push for an oxygen prescription after reviewing the link. Been a life change for me personally and for many on the board.

Joe

Welcome to the community SpringThyme....sorry you had the need to find us though!!!

Joe gave you a complete rundown but just wanted to add my vote to PUSH for the O2 if you don't have it!!!  Like Joe, it has been a "life changer" for me!!!

Good luck and Welcome Home!!!

Dallas Denny

Hi SpringThyme

You've found a place where people do understand exactly what it's like to get CHs, we either get them ourselves or we support people with them.

With CHs you need to lines of attack to minimise the effect they are having. The first is to get on a good preventive to try to limit the number of CHs you get. You mentioned being on topomax, which is used to prevent CHs, but possibly it isn't working for you. Talk to your neurologist about trying either verapamil or lithium which are two of the other commonly used preventives.

Whilst starting a preventive you may be given a prednisione taper, starting at a high dose and tapering off over a couple of weeks. This will give the preventive time to build up in your system. You just don't want to be on prednisione too long as it's pretty harsh on your body.

The other line of attack is to abort the CH once it arrives. You've mentioned imitrex but not how you've been using it. The injectable form can be very effective with killing off a CH in minutes compared to the tablet form which needs to be digested first which takes a lot longer.

Another alternative that many of us rave about is oxygen. Starting on it as soon as the CH arrives, using a non-rebreather mask at a high flow rate (15lpm or higher) can get me to a pain free state in about 6 minutes (the higher the flow rate the quicker for me).

Once you've got this combination working, you'll notice a huge difference in the impact that CH has on you.

And do add where you are from to your profile. It will mean that people can help you based on local information.

Keep reading and keep asking questions.

springthyme wrote on Feb 26^th, 2011 at 12:53pm:

. I hope you all don't think I am complaining

Hi Springthyme,
You complain ALL you want!, That's why we are here!
You are not the first, and you will not be the last!

I am a newbie but, the one single most important thing missing from your meds is O2...

What sort of level of pain are you having? It must be bad for you to quit your job for Gods sake!

Respect

Gary

Hello there ~

I almost want to cry...but crying can sometimes lead to a headache!  :o  I am so thankful for your ideas and support.  I cannot believe that after 4 neurologists, NONE of them have suggested any of these things.  I have gone broke trying to find relief.

I have never tried Imitrex injected...just the pill form.  I have never tried O2 either.  I have never tried Lithium and the blood pressure med suggested.  Thankfully my current neuro seems reasonable and if I made the suggestion, he would trust my opinion and I am sure he would support my desire to try something new!

Yes, quitting a job that I loved was hard, and my boss thinks that quitting over "headaches" was just an excuse.  I wish it was.  At the end of a day, I could hardly drive home without getting sick in the car from pain.  The rest of the night is a nightmare that only YOU guys can understand.

So I finally have hope...REALLY thank you guys so much.  I was truly at my wits end with this CH thing...you may be the only ones to truly understand how hopeless this pain has made me feel.

SpringThyme

Have you ever worked with a headache specialist vs. a general neurologist?

Sometimes a fresh perspective is useful.
---
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.
===========
In reading your messages Iam struck by several strongly emotionally laden words: "fear, hate, can't stand..., 'but not complaining'".

I'm not being flip when I ask you to seriously read the article and, if you are curious, go to the organization listed at the end.

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Hi SpringThyme,

Really sorry about your job and wish you had got here a lot sooner!
But your'e here now, so lets look forward and get your CH manageable!

And yeah, WE do understand!

Respect

Gary

Hey SpringThyme,

'Sounds like there's room for improvement in quality of life.  Tell us a bit more about the frequency and intensity of your CH. 

Too many CH'ers tend to cling to the first combination of medications that bring any measurable relief like a security blanket and are hesitant to try anything new out fear it will make the beast come back more frequently and with a vengeance.

Unfortunately too many well intended physicians will prescribe headache medications they've prescribed in the past while others may even prescribe some of the mainstream cluster headache medications and both will think they've done the right thing.  However if these medications don't provide acceptable relief by either preventing or aborting your CH, you're the one who suffers.

Even if you find a particular medication or combination of medications that provide some relief from CH, you still need to ask yourself a few questions like:

Are these medications worth the frequent side effects in providing the kind of relief I expect? 

Am I getting the level of relief from CH that I expect? and finally,

Are these medications helping provide the quality of life I want?

You're fortunate to have a physician willing to work with you.  Many of us have found a physician like that is essential in finding effective treatments for our disorder.

Even when you find a physician like yours and come up with a winning treatment that brings acceptable relief from our disorder, the battle isn't over.  The only thing consistent about cluster headaches is they change, and more than likely, so will the need to change your medications.

You've already taken some steps to change your diet and stop drinking (ugh...  I don't think I could have done the latter) so you are trying things that could help.  That's a good sign... so don't stop there.

Work with your physician to develop a treatment strategy that has as its ultimate goal being pain free. 

The best advice I got from the old hands here at CH.com was to enjoy life between the bouts and try to do the same between attacks.  This requires both a healthy attitude and discipline that help far more than sitting around having anxiety attacks waiting for the next CH.

Tell your physician you want to try oxygen therapy.  It's the first acute treatment/abortive of choice prescribed by the top neurologists experienced in treating our disorder. 

If you use it properly at flow rates that support hyperventilation as soon as you sense a CH approaching, you'll find like many of us have, that you can abort most if not all your CH in short order.  That alone will give you a sense of confidence that makes anxiety of the next CH a thing of the past.

Ask your physician to check your vitamin D3 level.  A small but growing number of us are taking up to 10,000I.U. vitamin D3 with very promising results.

In short, there are a lot of things to try and do to get a better handle on your CH.

Take care and hang in there,

V/R, Batch

Yep, I had no idea that I would find a place that would have others like myself.  Even better, you have all been fighting the battle and know what weapons to use!!!  I am so happy about that.

The frequency of my CH's are...well I have had 3 in a 2 year period.  I am a chronic migrainer of 12 years and I thought I knew what debilitating pain was....HAHAHA!  I laugh at that migraine pain now.  That pain scale only goes to a 10 (according to the doc).  These new babies are off the charts.

I had one last year, one 2 months ago and one 2 weeks ago.  I have absolutely no idea if this is normal or what, but it is NOT okay with me. 

What is this 'cycle' that I hear mentioned in other threads?

I went to the neuro after the one last year and he said that yes, it was a CH and to UP my Topomax dose from 100mgs to 200mgs.  He also asked me to take Magnesium supplements...which I agreed to.  Obviously that's not working.  When I get one, I treat it like a migraine and take a muscle relaxer, a Maxalt (Imitrex pill form makes me super sick), 3 Tylenol and an Fenagrin (anti-nausea pill).  I sometimes have to take these a second time if I get sick. These hardly work for my migraine and seem silly with the CH's.  I just have a routine and didnt know what else to do.

So Vitamin D3.  Interesting because I am always Vitamin D deficient.  I am prescribed the 50,000 unit dose for a few months then go back to regular supplements. 

I hope that I can get an appt. with the doc soon!  I will mention the O2 thearapy.  I wrote a small letter/list so that I dont forget to mention everything. 

Thanks~SpringThyme