New CH member here, any ideas?

[Flatty]

I am new to the site, but not new to CH.  I have been having them off and on for over 10 years.  I am now 41, and they are back after a 3 month break.  I do have some questions for you guys here:

1.  Is stress a trigger?  I am under a LOT of stress right now, and they seem to come when I am oout of sorts usually.

2.  My CH came on about 2 hours after I fell asleep, and lasted for over an hour 2 nights ago, but only 30 min last night.  Does this mean they are ready to leave me again?

3.  Other than some fresh air, nothing seems to help.  I read about some meds, but Iwant to go naturally on these instead of doping myself up.

4.  Any recs for Doctors that know what they are talking about in the SF bay area?  I am very close to stanford hospitals.

 

Thanks for the site.  Its "good" to know I am not alone in this fight.  

 

Dima

[jon019]

40 minutes ago, Flatty said:

I am new to the site, but not new to CH.  I have been having them off and on for over 10 years.  I am now 41, and they are back after a 3 month break.  I do have some questions for you guys here:

Welcome Dima....glad you found us...some good folks will be by shortly to reply...in the meantime..

Quote

1.  Is stress a trigger?  I am under a LOT of stress right now, and they seem to come when I am oout of sorts usually.

It's strange.....for some...like myself...stress is protective...relief FROM stress is a trigger......

Quote

2.  My CH came on about 2 hours after I fell asleep, and lasted for over an hour 2 nights ago, but only 30 min last night.  Does this mean they are ready to leave me again?

Short answer...look for a trend....one offs frequently are just the beast screwing with you....

3.  Other than some fresh air, nothing seems to help.  I read about some meds, but Iwant to go naturally on these instead of doping myself up.

Do you have oxygen or the possibility of getting access? Cheap...easy....quick, no side effects...generally regarded as THE primary first line abortive. Set up the tank for quick access...hit it hard...hit it quick..............with a non-rebreather mask (very important...and at least 15 liters per minute.) Many find help from energy drinks with at least 100 mg of caffeine and 1000 mg taurine (acts as a booster). The small 5 hr energy bottles are most convenient. Find the cheapest with those ingredients...I get mine at discount grocery stores....$1/can for 16 ozs...lasts two hits for me. You will hear the name Red Bull...it was the first...advertises extensively (which they want you to pay for) and it's surprisingly low in the necessary ingredients

4.  Any recs for Doctors that know what they are talking about in the SF bay area?  I am very close to stanford hospitals.

I was very successfully treated in Seattle by Dr Sheena Aurora...she is now at Stanford. If not her then find another headache SPECIALIST...regular neuros are surprisingly deficient in CH knowledge.....and find one that is writing a script for oxygen 2 seconds after they diagnose CH. Otherwise, you're just pounding your head against a wall (been there...done that)...is only a slight pun..........

Many have had success with vitamin d3 plus adjuncts regimen...I can't search the site right now but there is a link............

Sorry for the odd form of this post...my PC doesn't like me anymore........................

Best

Jon

 

Thanks for the site.  Its "good" to know I am not alone in this fight.  

 

Dima

 

Edited April 9, 2018 by jon019

[CHfather]

Adding just a little to what Jon said. . . . Here's a link to learn more about the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708   In San Francisco, UCSF Medical Center Headache Center is led by one of the world's leading CH experts, Dr. Peter Goadsby: https://www.ucsfhealth.org/clinics/headache_center/   It's hard for me to imagine how fresh air helped you, but as Jon says, the highly-effective, no-side-effect standard abortive is oxygen.  Lucky for you (compared to many people), I think you can count on seeing a doctor at Stanford or in SF who will prescribe O2.  For some people, sipping ice water through a straw aimed at the roof of the mouth, in order to induce "brain freeze," will stop an attack.  Any other method that gets that roof very cold (such as holding frozen juice concentrate against it) will accomplish the same purpose.  I'm not mentioning drugs or druglike things such as melatonin and Benadryl, since you say you don't want that.  If you change your mind, let us know.  Since your hits come at night, you could try sleeping in a recliner or in some more upright position (e.g., at a table with your head on pillows on the table).  

[cbitter]

Hi Dima.  

1. For me, stress has always been huge trigger (finals, 30 years ago, in college; birth of kids; job transitions; etc.).

2. Most folks do get hit most often at night   I find that, early in a cycle, there's not much pattern; but over time the evening becomes a ritual (up at 11; 12:30; 2; 3:30;5;give up and make coffee).  

3. I can't overstate how important oxygen is.  I tried it multiple times over many cycles (and multiple years) before I figured out how to do it successfully.   Search the forum and find the right regulator (15 lpm minimum), non-rebreather mask, and proper technique.  Most docs will shy away from prescribing O2; and even when they do, the medical supply company will bring the wrong thing (small tanks; concentrarors).  Bypass all that; find a local welding supply.  I shied away from doing this for years; it was a mistake.  

4. I hope you find a great neuro.  In my experience, the best you can hope for is an empathic ear who's willing to work with you and will listen to your ideas.

Good luck with your journey.  

Craig

[jon019]

1 hour ago, cbitter said:

.......

Good luck with your journey.  

Craig

EXCELLENT post Craig.....I JUMPED up at that last sentence too! EXACTLY.....life's a journey...an interesting one.....CH is just another car in the train.................and  they're all connected..................