First Post - Can't shake a cycle

[Quinton]

Hi everyone, just joining this forum. Excited to connect with this community and see how we can support one another.

Been experiencing episodic cluster for about 8 years. When a cycle starts I take 160mg verapamil 3x per day and this has worked to end cycles in the past. Around 5 months ago, after being attack free for a few months I tried to get off of the verapamil and within a few days the attacks came back in full force. I then started verapamil again and after a few weeks the attacks ended. I continued taking it for a few months with no attacks and then tried to get off again. Again, attacks came back in full force. But this time starting the verapamil has only lessened severity, not prevented attacks.

May be just psychological, but I was worrying that the verapamil was causing the problems and triggering rebound headaches. I started a 9 day prednisone taper to try to end the cycle and I stopped taking verapamil, but I am on my 4th day and attacks are getting more frequent and severe. I am not sure what to do at this point. I only have a few doses of sumatriptan injection left as I have been burning through my stockpile. Been using them to stop attacks daily.

Any suggestions or insights into what is going on? And why things that have worked in the past (verapamil, prednisone taper) do not appear as effective currently?

I am working on getting oxygen but waiting on insurance approval.

Appreciate the help and support!

Quinton

[Rod H]

Get the o2 and read every thread on this site. Ch changes and morphs for about everybody. But the tools are here as is the support. 

[CHfather]

For now .....  split your Imitrex injections.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/\   If I had to suggest one culprit for what's going on now, I'd look to the Imitrex, which famously makes attacks longer and more resistant to treatment, and lengthens cycles.  Using less is better.  Using none (eventually) is of course ideal.

It's very common for pharma things that worked in the past to not work anymore.  The "medical" solution is more: higher doses of verap up to 960 and even higher; longer and stronger pred tapers (a leading CH expert recommends 21 days with multiple days at 60mg).  As you have said, this might have short-term results but long-term drawbacks.

Oxygen doesn't go that way.  It works and keeps on working.  Same is true of the D3 regimen: https://clusterbusters.org/resource/d3-vitamin-therapy-and-loading-details/  Same is generally true of busting, with some adjustments required by some people. (Click on "New Users - Please Read Here First" in the blue banner near the top of each page.)

A "certificate of medical necessity" from your doctor seems to help with insurance approvals.  As you might know, many people with CH (probably at least one in five) use welding oxygen, which can be obtained without a prescription. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

Try downing an energy shot (for example, 5-Hour Energy) at the first sign of an attack.  You might get some aborts from that, which will reduce your Trex usage.  (Strong cup of coffee works for some, other kinds of energy drinks, such as Red Bull or V-8 Energy, can also be effective. Despite their small size, energy shots pack the highest caffeine punch.

Check your triggers.  You never know.  https://clusterbusters.org/forums/topic/4568-triggers/

[Bejeeber]

I've nothing to add except an endorsement for the impressively condensed best of the best advice already offered.

[FunTimes]

if you have the script from your doctor for the oxygen start calling around to all the vendors in your area and get the ball rolling. You will probably only need the tanks from them and get your own regulators and mask. I pay out of pocket for my oxygen as it is cheaper for me that way. Here is a few links to regulators and the oxygen mask you will want to get for your setup. You will want a regulator that goes up to 25 LPM with a barb fitting for the tubing to attach to it. 

Mask: http://www.clusterheadaches.com/ccp8/

540 Regulator for larger size tanks (M, M60): https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 or https://www.amazon.com/Regulator-CGA-540-Responsive-Respiratory-120-1205/dp/B07ZS9JK7P/ref=pd_lpo_sccl_1/135-6324550-2316945?pd_rd_w=zpYOS&content-id=amzn1.sym.116f529c-aa4d-4763-b2b6-4d614ec7dc00&pf_rd_p=116f529c-aa4d-4763-b2b6-4d614ec7dc00&pf_rd_r=K8YQYE2NB64K5QQ6HF88&pd_rd_wg=ocBIu&pd_rd_r=c4fe90c6-deed-4591-8360-0bc059358ef9&pd_rd_i=B07ZS9JK7P&psc=1

Standard size regulator for smaller tanks (E tank):https://www.wtfarley.com/Oxygen-Standard-Body-Click-Regulator or https://www.amazon.com/Medline-HCS8725M-Oxygen-Regulator-Latex/dp/B00BLQKKQQ/ref=asc_df_B00BLQKKQQ/?tag=hyprod-20&linkCode=df0&hvadid=167135816306&hvpos=&hvnetw=g&hvrand=18085319068956249510&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9007275&hvtargid=pla-500449369392&psc=1

[Mizagorn]

I'd like to add my bit to the "extending Imitrex" link. 

My neurologist always wants to prescribe the auto-injector shots. Instead, I ask for just the generic sumatriptan vials. They come in packs of 5. With a GoodRx coupon (if you don't have insurance) it should run less than $60. Sometimes at CVS, I actually get two boxes. So, that's 30 doses. 

You will also need to buy some 10-packs of insulin syringes. I get the BD brand, 31 gauge, 50 unit size. They keep them behind the counter and should be anywhere from $3-$5 per bag.

Diabetics will be familiar with the procedure, but in case you've never done your own injections here's how you do it:

Each syringe will come with a bit of air in it. You stick the needle into the vial then push the plunger of the syringe into the vial. This puts a bit of pressure into the vial so it's easier to correctly get the dosage you want. 

Slowly and carefully pull the plunger until the syringe is filled to the 20 unit mark. That's 2ml, and one third of a "dose". 

Swab the injection area with rubbing alcohol (I do this on my belly because that's pretty much the only place I have body fat). Insert the needle sort of at a 45 degree angle or so under the skin and into the fat, but not deep enough to hit any other tissue. (This is where "subcutaneous" comes from.) 

Slowly press the plunger in with steady pressure. You might get some resistance from the syringe at first, but if you go too fast some of the medicine will leak back out of the injection site and you won't quite get the full 1/3 dose. 

Remove syringe and wipe site again. A few minutes later (generally 7-12 for me) you have relief! At a much lower cost haha. 

Since I am not a drug user or share syringes, I use each 2 or 3 times. More than that and they are too dull to use. 

This helps prevent the tolerance and rebound effect. You get 6 treatments instead of 2 each day. 

But above all else, do whatever it takes to get oxygen. I'm a "welder" - I get 200 liter tanks for about $30 with exchange from AirGas. They last me 3 to 7 days depending on how busy my trigeminal nerve decides to be. I don't tell them what I'm using it for and they don't ask. It comes with a CGA 540 valve connector and you can buy your own regulator. I very highly recommend the O2ptimask setup mentioned. I've had mine for 4 years I guess. It is extremely well made. 

[CHfather]

With help from the moderators, I have revised the "extending imitrex" post in the CB files section to include a link to your post, @Mizagornhttps://clusterbusters.org/forums/topic/2446-extending-imitrex/#comment-29960.  Thank you!

Edited October 24, 2023 by CHfather