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Duff

New member - not new to clusters

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About four years ago at 46 years of age) I had my first cluster attack.  Right before Easter.  The pattern was once a night about an hour after going to bed.  I'd have an F8-9 attack, ride it out by walking through the house and then when it passed I'd be able to sleep the rest of the night.  No shadows during the day, no other issues.

I adopted Batch's D3 regimen, supplemented with 10mg of melatonin and 50mg of benadryl before bedtime and within about two week the clusters were gone.  I immediately stopped the D3 program (foolish - I know).

Flash forward to two weeks ago.  I got hit with a nighttime blast, but there were changes.  No going back to sleep.  Every time I nodded off - POW - another hit.  At about three in the morning I was able to go to sleep for a few hours.  I immediately began the D3 regimen again.  This cycle was different - I was getting heavy shadows during the day, with an occasional trigeminal twinge - almost like a toothache.  I could feel the trigeminal soreness when breathing in colder air.  The soreness would depend on the number of hits during the night.

On Saturday I was sure I was going to be in for a very rough night, but lo and behold, I had only a minor hit (F3) and was able to sleep well into the morning.  Last night, I was able to make it through the night with no hits.  Knocking on wood that the D3 regimen has again beaten it back, but this time I'm going to stick with it.

A couple of observations from this last run:

1.  Spring has sprung and everything is blooming here in Norcal.  I'm having a hell of a time with my eye allergies.  My cycles were four years apart, almost to the week.

2.  I'm having a lot more photosensitivity this time around - but am also figuring that the allergies have a lot to do with this.  I having a hell of a time keeping my contacts in.

3.  The latest round came off of a stint of several weeks of off and on night work.

4.  Drinking Yogi Ginger tea seems to have helped.

5.  While I immediately restarted the D3 protocol after my first hit, I did not get relief until taking the 10mg of melatonin.  Whether this was coincidental or not (I am at the end of the D3 loading dose) is unknown.

6.  Caffeine did not seem to affect it one way or the other.

7.  The cycle kicked off with a doozy of a migraine - I get one of these once every two years or so.  I used to get them a lot as a teenager.

I have a doctors appointment on Friday.  Last go around, the Doctor recommended the melatonin as a supplement to the D3 regimen (he's a big fan of D3 in general).  I'm planning on asking him for Oxygen - just in case it comes back.

The first time the doctor did not do an MRI our Cat Scan.  The reasoning was that my hits were coming at the same time every night.  This had me a bit scared during this last go around because the patterns had changed.  In the back of my mind I'm worried about a tumor, MS or an aneurysm - although I doubt I would get a 4 year remission with any of these, or for that matter, only have these hits after going to sleep.

Anyway, I'm posting just to share the common knowledge - and to add in how I'm dosing with the benadryl and melatonin.

 

 

 

 


 

 

 

 

 

 

 

 

 

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depending on how the benadryl reacts with your system you can also take that during the day. I will add 25mg 3 times a day and then the melatonin at bed time when things get bad for me. I would push hard for the oxygen and make sure you get the correct setup with the cluster mask and high flow regulator. You can just take when the oxygen company gives you and put it aside, they screw it up all the time. Order the correct things online and it will make a huge difference.

I would ask to get your head scanned just to make sure things are all screwed on correctly, It will only cost a few bucks to make sure your going to stay alive to enjoy the years of cluster fun!

Have you ever been given Verapamil or any other preventative medication to take daily? Verapamil at large dosses can help many keep clusters in check. The shadows can be helped with energy drinks, ginger tea and strong coffee for a lot of people.

Cluster headaches will change over time and can be different for every cycle and also move from episodic to chronic so you will want to keep a log book of when you get hit, how long and what you did to abort it. This way you will be able to look it over and come up with a good  plan on how to deal with it the next time. 

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Hi I have been suffering from ch for about 7 yrs I’m 37 now I was free of ch’s for 2 yrs now about 2-1/2 to 3 weeks ago boom getting hit hard pain is much worse then it ever was I quickly use imatrex when at work o2 when home. What is the d3 regimen. Would like to try it

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Mox's first rule of cluster headaches.

No two cluster heads are the same, and just as soon as you figure your's out, it changes. 

Get your head scanned. If for no other reason than it'll put that question to rest. Stress management is an important factor in all headache types, and if that is a lingering question, then it's a stress that is having an impact. 

Photosensitivity tends to be related more to migraines than clusters. I'm never light sensitive during a cluster attack, but super light sensitive during a migraine. 

Mox

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