New cocktail

[Dlions20]

I visited a new doctor today from a headache institute. She seemed to really know a lot about cluster headaches, something the past 2 neurologists did not. She walked me through all of the common therapies i see on here and gave me some trials for sumitripan to try if I wanted. 

however, she wound up writing me a prescription to break the cycle, something I’ve never seen on here or anywhere else. She mentioned she’s not really a fan of verapamil. 

It’s a daily cocktail of methylprednisolone and meloxicam (Mobic) .

I’m very wary of trying new things like this when I’ve never seen it mentioned anywhere. Does anyone have any experience? 

 

 

 

[Pebblesthecorgi]

Steroids in high enough doses can quell a cycle but likely not break one.  Then you have to deal with the potential side effects of steroids.  They can be helpful but like most interventions its a two sided sword.   Mobic is just a fancy non steroidal like indomethacin or motrin.  It is a COX 2 inhibitor but a doubt very much it will help clusters.  It has a role in treating acute post operative pain but not much of a track record in cluster headaches.   Was the sumatriptan injection, nasal or oral?  Oral is useless in acute attacks.  A good test to see if this individual offered oxygen, discussed CGRP meds an has a stepwise plan.  Anyone who understands cluster headaches from a treatment perspective should offer O2 up front to abort.  If they don't their knowledge is suspect.

[jon019]

...typed before I saw Pebbles post...don't have the energy to revise...1000% right , as usual...the first thing out of her mouth should have been OXYGEN! (yes?)....headache docs divided on verapamil...many have been helped tremendously but high doses usually required, which can lead to unpleasant and/or dangerous side effects (me, none)....

.....don't it feel good to have headache specialist doc?....for CH most regular docs (and most neuros) are only good for the scripts we need (VERY important as it's hard to get into specialists)...that is,  if they are willing to LISTEN to what we need...

...methylprednisolone explained to me as prednisone on steroids...did an IV plus a taper twice...miraculously (it seemed) the first time it actually broke a cycle MID cycle...the next time nada....moved on to safer alternatives afterwards...

...Meloxicam a strong NSAID...those help some with shadows, but rarely help for 'regular" hits....perhaps the combo more effective (I'm doubtful)...the makers of Imitrex combined it with naproxen (another NSAID) to make a "new" product.... and delay generic competition for Trex..."lovely" folks, those.....

Edited November 21, 2019 by jon019

[CHfather]

FWIW, methylprednisolone is only slightly stronger than prednisone, about a 5/4 ratio.  Otherwise, it's the same thing.  So depending on the dosage, you might not be taking any more corticosteroid, or the same, or less than if you were prescribed plain old prednisone.  There was a time when there was some research on injections of methylprednisolone for CH, and that seemed to help, but the general conclusion was that it reduced attacks but wouldn't break a cycle in most cases.

As the previous posters have said, a doctor that doesn't prescribe O2 just doesn't seem like a CH expert.  I hope you're doing the D3 regimen and taking steps to get O2.

[Dlions20]

1 hour ago, Pebblesthecorgi said:

Steroids in high enough doses can quell a cycle but likely not break one.  Then you have to deal with the potential side effects of steroids.  They can be helpful but like most interventions its a two sided sword.   Mobic is just a fancy non steroidal like indomethacin or motrin.  It is a COX 2 inhibitor but a doubt very much it will help clusters.  It has a role in treating acute post operative pain but not much of a track record in cluster headaches.   Was the sumatriptan injection, nasal or oral?  Oral is useless in acute attacks.  A good test to see if this individual offered oxygen, discussed CGRP meds an has a stepwise plan.  Anyone who understands cluster headaches from a treatment perspective should offer O2 up front to abort.  If they don't their knowledge is suspect.

Thank you for all the replies. She did write me a script for oxygen to continue and mentioned it was effective, but I already have it anyways. I just haven’t found it to be effective for me but I bet I’m not doing it right or for long enough. 
 

The interesting thing about this place was that they prefer to find the underlying causes before just writing a much of meds. She wants me to have a neck mri ( I have already done a brain mri), sleep test, stress test and allergy test. I haven’t decided if I will do these yet but it was a new approach. She mentioned that a lot of the time their are underlying issues that can be treated to help get rid of it. 

[Pebblesthecorgi]

For clusters the underlying cause(s) remain a mystery.  There are a few credible theories and tons of speculation but understanding what exactly predisposes one to clusters and the mechanism of action remains elusive.  Any of the treatments that work (with the possible exception of busting) are like a band-aid.  They relieve the suffering but don't address the underlying cause.   Whether by vascular constriction, reduced inflammation or tempered immune response the intervention is still focused on symptom relief rather than the underlying cause.  Investigations such as imaging (CT, MRI), by definition, are to rule out other causes for the pain not to identify the cause of cluster headaches.