New Member - CCH Sufferer 15 years

[dre22]

Hey everyone, I'm Charles, a 39 (nearly 40) year old CCH patient.

My headaches began coming on around age 24-25.  I would wake up with what felt like the beginnings of a stuffy right nostril/sinus headache.  Eventually, I would be rocked with pain behind my right eye as though I was being stabbed from the inside of my eye socket.  Feelings of nausea and a complete inability to concentrate on anything would come on quickly.  Sometimes I could (early on) get rid of the headache during initial stages with high doses of tylenol/ibuprophen and lots of coca-cola.  Finally, I went to see my GP who misdiagnosed me with ocular migraines and prescribed 20mg Imitrex nasal spray.  This treatment worked for a little while, but soon became about 50-50 effective/not effective.

About 2 years ago I found a neurologist who is a headache specialist near me (lucky).  He put me on Verapamil as a preventative (initially 240mg/day) and prescribed me the STATpen Imitrex 6mL dose.  My injections of Imitrex are about 98% effective in aborting my CH.  Since I was not seeing any real reduction in the number of attacks he upped me to Verapamil 360mg/day, Depakote 500mg/2x day.  For anxiety purposes I take 50 mg of Zoloft daily as well just for full disclosure.

Initially when I began the new cocktail (depakote, verapamil) I was super strict watching triggers and went down to 1 attack per month that needed imitrex.  I would have maybe some shadows or Kip 1 attacks that seemed to respond to Aleve.  However, my diet has been iffy at best and I'm at a terrible time of year for me (change in season) and I have been having a lot of attacks necessitating my rescue meds (Imitrex) to kill the pain.

I really want to get these under control.  Getting back to 1 per month and hopefully down the road maybe a longer remission.  Wishing all my fellow sufferers the best!!

Triggers:

Alcohol, Fluctuations in air pressure, Large temp fluctuations, aged cheeses, lack of sleep, periods of high stress, not drinking enough water.

Additional information:

I am trying the approach found at this link right now: https://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

My Next Appointment:

My follow up is the last week in April. 

 

[CHfather]

dre, just a few thoughts.

You don't have oxygen??  You really, really want that for aborting attacks.  We can tell you more before your appointment (your doctor should have prescribed it already) if you're interested.

The D3 approach should help you, though the effects are rarely rapid.  Takes a few weeks.  Does the document you're going by include Benadryl?  The author of that document, Pete Batcheller, is now recommending Benadryl twice daily, at the full prescribed level during allergy seasons and lower levels when it's not allergy season.

You can split your Imitrex injections to use less with each injection.  See the file "Extending Imitrex" in the ClusterBuster Files section of the board.

Many people here will tell you that verapamil didn't fully work for them until they get to around 960mg/day.

Of course, many here will also tell you that ultimately "busting" is the best way to achieve your goal.  You can read about busting in the numbered files in the ClusterBuster Files section.

[dre22]

Sorry this was a duplicate posting.  My fault.

 

 

Edited April 12, 2017 by dre22
duplicate posting

[dre22]

I tried O2 with no help. I'm thinking of considering it again, this time with the mask sold on clusterheadaches.org which is specific to our conditions.  I'm going to add the Benadryl in soon, taken at night since I will just be a zombie otherwise.  I just got my regimen back up and running after missing 2 weeks. So I'm going to load my Vit-D again. 

I have seen the high doses of Verapamil out there, but my Doctor told me he doesn't like going above 360. 

Thanks for the reply!  

 

 

[CHfather]

dre,

It is almost unheard of for O2 not to work if the mask you mention is used along with a high-flow regulator (25 lpm or higher) and a good breathing strategy.  You should definitely try it. (The energy shot, such as 5-Hour Energy, taken while getting on the O2 helps (or some form of caffeine, at least)).

Your doctor might have reasons for not going above 360 on the verap, but up to 960 is standard CH treatment.  If you google [Goadsby treatment of cluster headache] you'll see an example from a leading CH medical expert.

PF wishes.

 

[dre22]

1 hour ago, CHfather said:

dre,

It is almost unheard of for O2 not to work if the mask you mention is used along with a high-flow regulator (25 lpm or higher) and a good breathing strategy.  You should definitely try it. (The energy shot, such as 5-Hour Energy, taken while getting on the O2 helps (or some form of caffeine, at least)).

Your doctor might have reasons for not going above 360 on the verap, but up to 960 is standard CH treatment.  If you google [Goadsby treatment of cluster headache] you'll see an example from a leading CH medical expert.

PF wishes.

 

I am going to give the o2 a shot one more time with the specific mask identified.  I would need to continue to have my Imitrex shots handy because o2 simply is not that portable, so bringing it to work wouldn't be prudent.  5 hour energy with that seems like it might work as well. 

 

 

 

 

[CHfather]

if you are used to the large "m" or "h" tanks, you can get smaller, relatively portable "e" tanks for car/office.  if you find yourself breathing deeply and then having to wait for the bag to refill before you can inhale again, you need a higher-flow regulator.  you might also want to look at the very different O2 strategy recommended by oxygen expert Batch.  I can't link you to it, but if you put the phrase "red neck" into the search bar at the upper right side of the page here, it will take you to the thread where it is described.   be sure to look at that post about "extending imitrex," too.  it is rare for people to need more than 2, or at most 3, mg per injection.

[urs Brasil]

Cymbalta or Amitritylin as alternative to Verapamil/Isoptin. They do not work for everybody put eventually they are an alternative you and your doctor may consider.

[dre22]

I tried using Red Bull to stop a CH during onset and it worked!  I was very happy to find something that is not medication per se that can abort an attack.  Learned about that trick here on clusterbusters.org.  Thanks!

[CHfather]

:-)

[dre22]

The newer STAT Pen that they use for the Imitrex makes it VERY difficult to take apart. 

I'm guessing the dosages they put in the pens (6mL) are necessary for some type of headache?  Maybe migraines?  Otherwise why double the dose that is needed to abort the headache for no apparent reason?

I have read so much on this website the last couple of days, I really think I may want to give busting a try.

[Rod H]

I used imitrex for 12 years plus. Then I found this place and alternatives. I hope and pray that I'll never use it again. It works short term but made it worse for me long term. There is alot of knowledge here. As well as alot of support. I found this place a year ago and its been the best thing I've found for me in 18 yrs of fighting the beast. Keep reading and asking I've found relief and I feel like I owe it to "us" to help. Because it sucks thinking there is no hope. But there is and you have found it.

[CHfather]

4 hours ago, dre22 said:

The newer STAT Pen that they use for the Imitrex makes it VERY difficult to take apart. 

I'm guessing the dosages they put in the pens (6mL) are necessary for some type of headache?  Maybe migraines?  Otherwise why double the dose that is needed to abort the headache for no apparent reason?

I have read so much on this website the last couple of days, I really think I may want to give busting a try.

dre,

As I understand it, anything less than 6mg for CH is considered "off label."  Migraineurs can get 3mg or 4mg injectors.  Your "why" question . . . I suspect that the only trial for CH used 6mg, so it became the standard . . . and why should the pharma companies really care if that's too much: it works and people just accept the side effects and have to live with the insane costs.  All that is my understanding/opinion. 

A doctor can choose to prescribe you a 4mg injector, and some people can get prescriptions for vials of sumatriptan and syringes, so they can measure their own doses. All this should be considered, as Rod says, in the context of the risk that triptans extend cycles, create rebound attacks, and may make "regular" attacks worse.

If/when you're ready to try busting, let us know.  The numbered files in the ClusterBuster Files section are good for the basics, but a little out of date in some regards.

Just a quick note about RedBull.  If it works for you, there's no reason not to continue.  Many people do prefer energy shots, such as 5-Hour Energy, in part because they're easier to chug quickly.  An energy shot, small as it is, actually contains more caffeine and taurine than most of the 8oz drinks.

[registrateyourjourney]

I had the same with Imigran injections. Since I have stopped these injections, my attacks are less severe. Quitting them was a real hell for me but I did it and now I only bust with MM, use oxygen at 15l/minute with good mask and go out to get some sun as much as I can.

I hope you will find a solutions my friend.
 

 

[Ecaseson]

I took amerge ( a triptan ) for migraine and they helped sometimes for cluster too. As others mentioned the triptan did help but kept needing it and headaches and pain increased over time. I am down to one a month and will allow myself no more...this has decreased frequency for me. My goal is to end the use of triptans altogether. I do use O2. My regulator goes up to 15. Sometimes it helps sometimes not. I need to try with a proper mask. When I breathe I take a tylenol tension which is tylenol with caffine. If none of this works, it is nausea and unbelievable pain for 3 days. I have tried many preventatives. Hopefully you will find great tips and advice on this site.

[CHfather]

Ecaseson, a lot of folks find that starting on the O2 with an energy shot such as 5-Hour Energy helps. 

Have you tried the D3 regimen (in the ClusterBuster Files section of this board)?

Higher-flow regulator, which you can get at amazon, and better mask do make a difference (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit)

If you enter "red neck" into the search bar at the top right side of the page, you'll see a breathing strategy recommended by Batch, an O2 guru, which has helped many people.