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Hi All,

I found so many of the threads here interesting but am really losing hope. I have tried the full gambit of drug therapies now and am due for my first GONB injection on Thursday this week. I'm also aware that it is hit and miss as far as success and doesn't last very long for those it does help. Any advice before I agree to surgery would be greatly appreciated!

Hey Lee,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and the good news is the odds are in your favor it doesn't need to be that way...

Be sure to ask your PCP or neurologist for the lab test of you 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status... 

The odds are you're vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH attacks. 

Moreover, we've lots of data indicating on the anti-inflammatory regimen with 10,000 IU/day vitamin D3 elevates 25(OH)D serum concentrations and that helps prevent CH for 80% of the CH'ers who try this regimen.

The "Go To" link with info on all the anti-inflammatory supplements, their doses, drug interactions and contraindications follows:

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

Take care and hang in there.

V/R, Batch

Hi Lee and welcome

You've found a great place to learn so much about CH, so don't give up hope.

Whilst you say you've tried the full gambit of drugs, you might not have tried everything now available or in a high enough dose. For example with verapamil many need aroound 1000mg a day which is well beyond what many doctors will go to, so people may think that a drug doesn't work for them when in fact it will.

Batch has mentioned the vitamin D3 approach, do give this a go, I've been pain free for just under 2 years using this and others have gone significantly longer and it can work for episodic and chronic.

Keep reading and let us know more.

If it's a literal truth that you have tried and failed to get ANY degree of relief from all the standard cluster treatments, then I'd encourage you to print out the following and ask your doc if this approach has been a part of his diagnostic work.


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

In order...pay close attention to Bob's thread....and to the Batch thread. If it's not CH....you're spinning your wheels with no chance of relief. If it is CH...PLEASE try the Batch regimen. 3.5 years pain free on it after 30 plus years episodic!

Joe

Good advice so far Lee. If you have the time and inclination, can you give us some idea of what you have taken for both prevents and abortives? It may help because there really is a whole list of stuff that could be helpful. If you keep that gamma knife appointment, our thoughts and prayers are with you. Please let us know the outcomes. God bless. lance

Lee,

So sorry to hear are so distressed. I am a newcomer myself so don't have lots of wisdom but can relate a bit even though mine does not sound as bad as yours.

What country are you in. Have you tired local websites/helplines?.
There is so many different therapies out there. I am not sure what you have tired but verapmril seems to be the one with most success and imitrex injections and o2 for abortive therapies.

Arm yourself with as much info and support as possible. I am not trying to teach you to suck eggs, sounds like you have tried it a lot already. I know that feeling of despair. After one really bad episode and no diagnosis I really thought I might do myself some harm with the pain and distress.

Take care. I have a file of information if you want I can try PM it to you. It has a lot of papers and research. I am a computer nerd but sure I can send ;)

Take care

Breda

I'm a new guy to the forums too, but one thing I didn't see listed on your failed treatments is Oxygen. I've had clusters since teenage years and had limited/no success until I finally found a neurologist that understands clusters.

Since then, Verapamil at a moderately large (but safe) dose and Oxygen inhaled at 12-15 lpm with a non-rebreather has been close to 100% effective. Sometimes a strong cup of coffee or a Red Bull right before oxygen speeds up the process

Verapamil takes a while to be effective (a week or two for me) but eventually breaks the cluster. Oxygen aborts a headache in 10-15 minutes without the awful side effects of triptans. Now I just keep oxygen on-hand year round.

Good luck