Another Newbie

[DayLight333]

New to this forum (As of Today) and very pleased to see tons of useful information, remedies, and dialog! I’ve known too well the pain and inconvenience of these headaches as early as age 11… (I’m 38). After multiple doctors visits, prescriptions, and misdiagnoses - I decided to see a neurologist and was finally properly diagnosed with CH around 2006-07. Since then, during a Cluster Cycle, I would confidently start my “diet” of no alcohol along with a successful Cluster Combo of meds: 7-day tapered dose of Prednisone, Verapamil, and Immatrex injections. This has worked for me 95% of the time, so I’ve never entertained any other options… until my current cycle. I believe I’ve put myself in a Rebound phase from overusing the injections, so now I’m thinking what should I try next?? Oxygen? D3? Busting?  
I have an appointment with a neurologist in a couple of weeks and have made up my mind that I’m definitely going to request a prescription for an oxygen tank. At least to start with since I’ve abruptly stopped ALL medications in an effort to end this Rebound phase (it’s been terrible)…

I don’t really talk about my CH in depth so even though I’m typing on my phone it kinda feels like I’m talking to someone who can relate… any suggestions as of next steps?

[CHfather]

Yes, yes, yes . . . OXYGEN.   Any way you can get that sooner than waiting for your appointment (a physician you can call for a prescription)??  You could set up welding O2 pretty quickly.

You should start the D3 regimen, too, but it's not likely to have an immediate effect.  

Busting -- sure.

I would not abruptly stop verapamil without checking with a doctor.  In fact, you might not be taking enough verap (some people need dosages in the 1000mg range for relief -- but you also can't go up very abruptly).

Have you read this file?  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ There are some things you can do to get through an attack better (energy shots and some specific strategies) -- listed toward the end under Other Treatments . . . 

[jon019]

...hi DayLight...welcome!

....you've been down the road of standard CH treatment so it seems odd that OXYGEN wasn't already in there. was a game changer for me and many others, and is the primary abortive recognized by the medical field...absolutely life altering. i understand it's different for different countries, but any physician can prescribe O2 in the US...i got my first once i educated my primary, 20 yrs before i ever saw a neuro. if possible find a headache specialist....many neuros are as frightfully ignorant of CH and its treatment as most PCPs....

.....no need to repeat the the priceless info you will find in the CHf file above...just to commend its accuracy. i found my best OXYGEN sucess was in downing a high caffeine/taurine energy drink (2 oz 5-hr energy type, quick, easily downed, portable, no sugar), or EXTRA strength caffeine drink, at the first sign of a hit, while slamming the O2 mask on my face immediately following.  had an E tank in the car, several in my office, and M's at home. there are various breathing techniques...most seem to find the best success by hyperventilation with intensive inhale and crunch exhale. i found slowww/deep breaths to be just as effective, with the added benefit of calming me the f down. breathe and hold another style. try 'em all, sometimes a combination of styles is the most effective...

....the D3 regimen is safe and easy and effective for many....good for you whether you are a clusterhead or not....you should start on it yesterday....

.....you are in a great place to learn about busting...

best

jonathan

 

Edited July 1, 2021 by jon019

[DayLight333]

Wow.. thanks to you both! I’ve always read that Oxygen was an option, but NEVER had a chance to talk with anyone about its effectiveness - mainly because I NEVER talk to anyone about my CH.. it’s refreshing to come across an entire community of people who know exactly what I’m going through. The information, testimonies, and advice I’ve been reading through for the past few days has been PRICELESS.
 

My Verapamil doses seem to extremely low compared to what I’ve seen here on the forum! (which is probably why it isn’t working) I’ve been taking ONE 120mg tab a day. Im going to try upping it to 3x a day. I still have not revisited the Immatrex injections, and have just been enduring the “hits” almost daily. The pain level for the past week or so has been about 6/10, so for some reason I keep telling myself that I’m on the final stages of this cycle so just ride it out. 
 

Any suggestions on how to request the Oxygen? E tanks, M tanks, masks, tubes, valves, regulators? I’m completely oblivious and this sounds like mechanic talk to me-lol!

[drewbie]

It would be very inadvisable to self prescribe increased dosage of verapamil. Only a medical professional should be doing that as there are potential cardiac side effects to verapamil that need to be carefully monitored with ECG. Certainly your dose is too low, but it's important you work with a neurologist/doctor to increase it.

[jon019]

....start with this and this...the first is the excellent O2 page from sister site clusterheadaches.com.....the second one of the many CHfather gifts to the family you may have already read....

Clusterheadaches.com NEW Message Board    

 

10. - OXYGEN INFORMATION - ClusterBuster Files - ClusterBusters

 

.....re verapamil...agree with drewbie...don't be changing dosage on your own. my neuro allowed me to titrate up and down, but only in increments after she trusted my judgement, and with appropriate monitoring. tripling your dosage is pretty dramatic...

.....for me nothing less than 480 mg/dy worked (double that+ in high cycle) and sustained release instead of immediate release was worthless .....lotsa water and fiber to keep things moving as constipation can become an issue...

[CHfather]

3 hours ago, DayLight333 said:

Any suggestions on how to request the Oxygen? E tanks, M tanks, masks, tubes, valves, regulators? I’m completely oblivious and this sounds like mechanic talk to me-lol!

The only thing to request from your doctor is a prescription for oxygen.  The standard prescription is something like: "Oxygen therapy: 15 mins at 15lpm with non-rebreather mask."  The prescription then gets provided to an oxygen supply company, and that's where you need to put your attention to get the right equipment.  In essence, that's cylinders (tanks) of O2, not a "concentrator" that makes O2 from room air; an M or H tank (the large types, for home use) and at least one E tank (portable for car, office, etc.); and a non-rebreather mask (NOT nasal cannula). If they'll give you a regulator that goes up to 25lpm (liters per minute), that will be nice, but most will just give you 15 lpm.  You might read the "Oxygen" section of this document --https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/--which repeats what I said here and expands on it in some places.

The big hurdle is getting that prescription.  If there's someone you can talk to at the doctor's office in advance about the doctor's inclination or disinclination to prescribe O2, you might be able to provide information if needed to sway that decision.  That info is in the file I linked to above.  At the least, you might bring some of it with you.

[xBoss]

Welcome to CB DayLight! GL with your journey.