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New to this whole thing (Read 2200 times)
Shy1
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New to this whole thing
Feb 1st, 2014 at 2:39pm
 
Im a medical student who had what looking back was probably one cluster of headaches in my teen.  I'm on my second one since med school started.  My doctor still isn't sure if these are weird migraines or cluster headaches but I'm pretty sure they are cluster headaches at this point.  Can anyone tell me what has worked for them?  My life is crazy busy right now, and this is really interfering to put it mildly.
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jason1212
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Reply #1 - Feb 1st, 2014 at 3:45pm
 
Welcome to the site, sorry you had to find us!  Your best bet is research and there's lots of great info on this site so start reading!

First of all, seek out a neurologist that specializes in headache, is the best advice I can give.  As far as what works, treatments are broken up into 2 main categories: prevents, to keep headaches away altogether and aborts, to fight a headache once you have it.

As for prevents, lots of us have great success with high doses of Verapamil, I currenty take 480mg per day others go as high as 1000mg/day.  For some of us our doctors have added other medications to work with the Verapamil such as Lithium or Amitriptyline.

On the non pharma prevent side, many have had success with an anti inflammatory regimen consisting of vitamin D3, fish oil, and Calcium Citrate, the go to link on this treatment is here Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.  Many have also had much relief from chemicals found in hallucinogenic drugs like "magic mushrooms", see Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Melatonin has been shown to be very successful in night attacks.

Prednisone is also a go to for stopping headache cycles dead in their tracks for as long as you're taking it.

As for aborts:  Oxygen at flow rates of 15lpm or higher through a non rebreather mask has saved a lot of lives.  Triptans like Imitrex, Zomig, or Maxalt are also life savers, the injections are the best, second would be the nasal sprays.

Energy drinks like Red Bull, Monster, and the like have helped many when downed very quickly at the onset of a headache. 

Hope this helps, good luck!
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maz
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Re: New to this whole thing
Reply #2 - Feb 1st, 2014 at 7:01pm
 
Hi and welcome

firstly, take the cluster quiz (tab on the left of your screen). It may help your diagnosis.

If it is cluster headache, triptans are the business. May be called imitrex, imigran or sumatriptan, depending on where you live. The tablets may not be too effective as they take too long to get into your system. The nasal spray is better, but best of all is the auto injections. They take me from screaming wreck to pain free in 5-7 minutes. My new best friend.

As Jason has said,have a look at the vitamin D3 regime. Over 80% of those who try it, report success.
Maz
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« Last Edit: Feb 1st, 2014 at 7:03pm by maz »  
 
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Guiseppi
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Re: New to this whole thing
Reply #3 - Feb 1st, 2014 at 7:52pm
 
Welcome to the board, sorry you're having headaches, that sucks, but always exciting to see people in the medical field researching CH! Jason and Maz have given you the basics, I'm a 30 year plus episodic sufferer who has gone 3 years pain free on the D-3 regimen, worth looking into.

But definitely look into getting a referral to a headache specialist neurologist. If it is CH, it's a lifetime deal, the sooner you get working with an expert the better!

Joe
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Hoppy
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Re: New to this whole thing
Reply #4 - Feb 1st, 2014 at 8:49pm
 
Hi Shy1,
I found relief with Imigran 50mg tabs washed down with a
really strong cup of coffee at the first sign of an attack, and
ice applied to the back of my neck. This would abort the Smiley within 20 minute's.

Hoppy.
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Shy1
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Reply #5 - Feb 1st, 2014 at 8:52pm
 
Good to know about the D3.  Might explain why I only get a cluster a year.  My levels are monitored due to a malabsorption and im way on the high side right now, coming down some.  Also good to hear the oral triptans don't work.  It gives me hope that when the injections come in Monday they might.  I read on the internet about prednisone and am actually taking some leftover we had around the house AMA.  Couldnt get a hold if my doc & the doc on call wanted me to wait till mid next week to ask my doc.  So far I think its really helped and the dose is lower than I've seen recommended.  I started verapamil yesterday, so I'm hoping Im on my way out if this cluster.  My last one responded well to oxygen alone, this one doesn't.  Are changes in response from one attack to the next typical for any of you?  I'm already on Ritalin and caffeine for medical school.  Might try my meds with Mountain Dew now that I know it could help.
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« Last Edit: Feb 1st, 2014 at 8:56pm by Shy1 »  
 
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Guiseppi
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Re: New to this whole thing
Reply #6 - Feb 1st, 2014 at 11:31pm
 
The ability of the beast to morph is legendary! What works well for one cycle doesn't to squat the next go round. That's one reason it's so critical to keep learning so you always have another weapon at your disposal when one fails. For me, prednisone as low as 20 mg. a day will provide 100% relief. Don't take that stuff long term though as it's really tough on your body.

Joe
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Shy1
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Reply #7 - Feb 2nd, 2014 at 12:12am
 
Thanks, that makes me feel better!  Been pretty much headache free all day!  I really needed that.  Was having a tough time thinking straight.  Do these clusters screw with your emotions too?  The last week or so I feel like I've been a basket case. Shocked
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Mike NZ
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Oxygen rocks! D3 too!


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Re: New to this whole thing
Reply #8 - Feb 2nd, 2014 at 2:25am
 
Shy1 wrote on Feb 2nd, 2014 at 12:12am:
Thanks, that makes me feel better!  Been pretty much headache free all day!  I really needed that.  Was having a tough time thinking straight.  Do these clusters screw with your emotions too?  The last week or so I feel like I've been a basket case. Shocked


We all know what CHs are like when untreated and you've to endure the beast doing his torture sessions. Would anyone be able to go through that and not be affected emotionally?

This is why we try to get people to get a good preventive and then have a set of abortives they can use when the CH breaks through. There is a massive difference in being able to be in control and not be helpless.

It's great to hear that you're bouncing back.
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Bob Johnson
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Re: New to this whole thing
Reply #9 - Feb 2nd, 2014 at 8:31am
 
Print the PDF file, below.

Explore:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.
========
If there continues to be a lack of clarity re. Dx, drop this material on your doc and see if this opens some new pathways.


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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« Last Edit: Feb 2nd, 2014 at 8:40am by Bob Johnson »  
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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