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Headblaster

Hello - First timer

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Hello fellow Cluster Headache people. Every day is a opportunity to knock you head against the wall, and some days multiple times!!

I developed CH's about 10 years and went through a few years of diagnosis the referral to a neurologist fir final  diagnosis of Cluster Headaches. in the beginning I would get have a 30 episode and 5 months off, now that gap of "off" time continually narrows. I am in a 3.5 month long episode now with no end in sight. I have been on every medication you can imagine and I am still blessed with these wonderful headaches(Not) 

The information about the over use of tripitan's and getting what I thought was a rebound CH was very informative. I will have one of the new GammaCore devices on Tuesday - it will be interesting to see what happens. Currently I am on 20 MG Predisine, 600 MG Lithium, 600 MG Verapamil, and ZanTac to keep the tummy settled.

What I can gather here is there is no silver bullet, except for keeping yourself stressed and very active. That seems to allow me to by pass and regular CH times. As soon as I relax, -- it is like a flaming arrow just went through the left side of my head. The only thing off on mine is they last exactly 1 hour and 15 minutes, you can set a watch by the. Weird, but CH's are wired. 

Also I am amazed by the amount of people that suffer from the hideous issue, I thought I was alone, thanks for being there, no I know I am not alone.

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Welcome to the party! Sorry you have to be here.

A few things you will want to look into.

Vitamin D3 posted on this site by Batch, this has helped alot of our members here and is just vitamines you can get from a local drug store like CVS Rite aid or Walmart

Oxygen to abort your attacks with a high flow regulator and the cluster mask. This will help you get off some other abortive medications you may take. 

5hr energy drinks can help hols a attack off until you make it to your oxygen and can also sometimes stop a cluster from developing into a full attack. 

Melatonin at bed time can help you sleep a little better and will help your overall mood from lack of sleep. 

and look on the members only boards, Theroy and busting stories, they will give you some ideas on how others use alternative methods to keep cycles from starting.

Lots to read here and ask all the questions you have someone else probably already had that same issue and can tell you what helped them

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12 minutes ago, Headblaster said:

What I can gather here is there is no silver bullet, except for keeping yourself stressed and very active. That seems to allow me to by pass and regular CH times.

I'm starting to pick up on this pattern as well. I'm typically feeling good in the morning, start working and maintain focus but as the day goes on, I can feel the fog building and by the end of a work day, the foggy shadows are much more dense and will be with me for the remainder of the evening.

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You are on a crapload of meds.  Establish if they work or not and if they don't wean them away.  Familiarize yourself with O2 for aborting and if it works it will help confirm your diagnosis.  Also I suspect most "alternative medication" success stories also respond to O2.  So if the O2 works learn about busting and if you are comfortable and prepared consider trying it.  Good luck.

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I have to agree with Pebbles in expressing concern about those meds. If they're not working, there could be less toxic alternatives. I'm somewhat hypocritical here in that I've had to take a bunch of meds this cycle, but that's only because my natural remedies didn't do the trick as they have in the past. I agree that O2 is the best abortive measure. The best abortive for me when I'm not near oxygen is called dipyrone, which is not sold in many countries because of a rare but serious potential side effect (where I live it's OTC). Ergotamine can be somewhat of a nighttime preventative. PLEASE let us know how you get on with Gammacore--good luck!

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Fun times is right there's a lot out there besides big pharma meds.. they can be a double edge sword.. most of us have tried them all. You'll find some help for a while and stop working. Some don't help at all but people are too desperate or afraid to stop taking them..I learned the hard way about lithium, verapimil and topamax. And that's not the list of ergots and triptans..I would make sure that you don't have any kind of infections ear,nose or phnomia, bronchitis.they can wear down you're immune system and keep clusters going in my opinion. It all adds to inflammation in the body. Theres people here say their clusters start after getting sick. It's not the reason for clusters but it can make it harder to stop a cycle.

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Hello all and thanks for your comments,

I am attaching my latest episodic spreadsheet for my cluster headaches. Maybe it will provide something of use for someone. In a nutshell you will see the pharmacology I have been on and am still on. Near the end you will see where the Vitamin D3 regime (Although modified) worked on the same day I started it. I will be off Prednisone by this Sunday and starting to ween off lithium after that. Anxious to find out how it goes. I hope I can make it off verapamil after that. Wish me luck!!

This episode started 11/18/18 and lasted till now, 222 cluster headaches of at least a 5 or I did not record them (Complacency)

Please forgive the spelling in the attached excel spreadsheet, but during a cluster headache I am sure everyone will understand that spelling falls out the window

Notes of interest:

  • GammaCore is a joke (made a couple CH's worse)
  • Aimovig is a joke
  • Finally received my O2 tanks on the day CH's stopped (Go Figure, the luck of a episodic!!)
  • In spreadsheet "Took inhaler" = Zomig
  • In spreadsheet "Took injector" = used either a 4mg or 6mg sumatriptan injector

 

Latest cluster episode.xlsx

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Have not posted in while -- But great news for me so far. I started the D3 Regime about six weeks ago. I am taking 15K of D3 and the rest that Batch has listed.

my 25-OH levels are below. Near the high end but not over the top. I have been completely pain free since the evening I started the regime. Thanks to all you busters out there!!

VITAMIN D,25-OH,TOTAL,IA

05/14/2019    
VITAMIN D,25-OH,TOTAL,IA 95 ng/mL (30-100 )

 

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