Periodic Cluster changing to continuous?

[Dan32]

Hi all, first off big thanks to those who frequent this forum and give advice. It’s really appreciated.

Im in my late 20s and have been dealing with annual clusters for about 8 years. I’ll usually have a 4 week period where I’m getting clusters for about 2-3 times a day and then it disappears. During the cluster period verapamil, oxygen and nerve blocks mean I can usually get through with only a couple of attacks.

2 x 240mg slow release Verapamil has been the key for me and then high flow oxygen during attacks. I’ve also been getting the nerve block injection but after having recent experience where the clusters broke through anyway, I feel like it’s the Verapamil that is helping the most. I step down off the 240 x 2 dose over about 5 weeks.

About 6 weeks ago my most recent cluster period started and it took longer than expected for it to get under control. Previous 2 years the verapamil and nerve block injection combo meant I would only have 1 or 2 days worth of attacks. This time around it was a week’s worth of attacks before stopping.

The problem: 2 weeks ago I woke up one morning in a panic because the feeling of an incoming headache was present. But no headache ever came. Instead the pressure feeling/ghost headache has remained and doesn’t want to go away. I’ve kept doing my 240mg x 2 dose for a week and then nervously began stepping down to 2 x 180mg with no change. So now I’m about to enter my 3rd week with this persistent headache feeling like the onset of cluster and I’m getting a bit frustrated.

Unfortunately I can’t get an appointment with my neurologist until October so looking to see if anyone else has had this experience? Worried this is the first sign of ongoing cluster which is a bit terrifying. Considering stepping down completely off the verapamil, giving it a few days and then jumping up to 3 x 240mg to see if that knocks it out. 

Thanks for the help, regardless of any suggestions it’s so nice not feeling along with all this!

[Pebblesthecorgi]

I have similar experiences with lurking beast.  In the beginning I was able to manage with some benadryl 25-50 mg at night.  When my cycles escalated I found Clusterbusters.  You are a young person and need to develop a workable strategy in case your condition intensifies.  I do not tell this to scare you but rather counsel preparedness so if it happens (and I hope it does not) you are not scrambling for relief.  An up front rational plan is best to avoid making deals with the devil.

 

Since Verapamil, oxygen and blocks seem to work it sounds like you have classic cluster headaches.  This should assure you have access to many treatments described.  Besides what you already do consider the D3 regimen described in this forum.   Many seem to benefit from it and the downside is pretty much nothing.  Understanding busting is worth exploring.  It is not for everyone and preparing yourself in terms of spiritual health, mental health and implementation makes the option a more positive experience.  It is much better to source or self supply when the cycle is over than in the midst of pain.  Plus self provision has a 2-3 month horizon from scratch.  Stay informed, horde your meds in case lifes situations change and explore options.  Hope you say pain free.  More than you asked for I realize but its best to use the collective wisdom of the generations that came before you to defeat the demon

[Dan32]

Thanks @Pebblesthecorgi

You've hit the nail on the head. This bout of cluster has shown me my illness will change and evolve and I cant pretend it's going to go away. I'm trying to be as proactive as possible and prepare for the worst while I'm not crippled by it.

Looking into the D3 now and going to start collecting what I need for Busting. Thankfully have a good support structure and some experience so if I need to go down the path of Busting I should be alright. @Batch if you’ve got a current D3 guide you’d be able to post here that would be amazing, sounds like it might have changed from an older one I found. Will be following @Dana129‘s links for Australian suppliers of the vitamins.

Interested by the Benadryl, hadnt come across that as a treatment. Interestingly I've been plagued by sinus issues and had a long planned septoplasty to correct a deviated septum 4 weeks ago. Got lucky in that the CH was under control and I didnt have to cancel my surgery, but wonder if the recovery around that has changed the nature of my headaches this time around.

[xxx]

Hey Dan,

I've  a published version of the anti-inflammatory regimen CH and MH preventative treatment protocol posted for download on the following VitaminDWiki link:

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Take care and please keep us posted.

V/R, Batch

[Dan32]

Thanks Batch, Brain On Fire and Pebbles.

Ordering my D3 supplies, feeling positive about what's ahead and looking forward to being involved in this community. Underestimated how validating it has been to see others talk about their experiences and treatments. Feel like it's helped me be able to properly see this thing in the light for the first time.

[Pebblesthecorgi]

I believe (opinion only) if a clusterhead needs surgery there are a few things you can request that can minimize attacks.  In fact it possible that some anesthetic agents may help treat clusters.  The literature on this is spotty and clinical reports are few but based on fairly decent response to psychedelics and the imputed mechanism of action certain anesthetics possess its not a big leap to speculate on what is the "best" mode of anesthesia if you require it.

Again this is mostly based on speculation and personal experience.  Be careful how you approach an anesthetist because if you act bossy you'll likely not get any consideration.  There are two main forms of anesthesia utilized in developed countries:  IV medications and inhaled agents.  Its not unusual to mix the two.  For cluster folks with wanky hypothalamus' the use of IV ketamine and propofol hits the right receptors and provides good anesthesia.  In anesthesia parlance's this is a TIVA (total IV anesthesia) and is a pretty versatile combination.  Adding some steroid like decadron also helps along with asking to wake up with 100% O2 running at 10-15 lpm through a non rebreathing mask. 

 

I have had the misfortune of needing a general anesthetic 5 times in the last year and a half and each time I was relieved to wake up clearheaded and lucid.  I was surprised how all the anesthetists were aware of O2's role in clusters and more than willing to accommodate.   They warned me about "green goblins" appearing and nightmares (ketamine is know for such things)  I assured them I was able to handle that better than a cluster.  Win another for  the psychedelic experience.