Chronic clusterheads... how do you know when a new hit starts?

[Bejeeber]

NOOO!! Denied! 

Man, couldn't they mention that out of state gotcha on their stinking website then, or at least in a pop up when someone first goes to make an appointment? I am miffed for you @trjonas, and sorry I gave you this big bum of a bum steer. 

[trjonas]

1 hour ago, Bejeeber said:

NOOO!! Denied! 

Man, couldn't they mention that out of state gotcha on their stinking website then, or at least in a pop up when someone first goes to make an appointment? I am miffed for you @trjonas, and sorry I gave you this big bum of a bum steer. 

Oh my goodness, it's not YOUR fault! I'm sad they aren't available for people in every state, otherwise maybe they'd end up being a great resource for a lot of people on this forum! But at least they can still be a resource for people on this forum who live in one of the states where they're licensed. You might still have helped many people!

And you inspired me to seek out other online neurologists who do provide services in my state (SC), so not all is lost. I'll keep you posted if I find a good one!

[Chris Moore]

I feel like many, many doctors (neurologists included) would be open to facetime/zoom appointments right now because of COVID. I had a zoom appointment with my regular doctor (not related to COVID) and it was pretty normal. I'd definitely spend the time looking up neuros that are covered by your insurance and just call their office and see if the doctor will see you via zoom. Worst they can do is say no. 

I really, really hope that your headaches can be treated with something as simple as indomethacin. That would be so amazing. Sending all my support <3 

[jon019]

6 hours ago, Chris Moore said:

 I'd definitely spend the time looking up neuros that are covered by your insurance and just call their office and see if the doctor will see you via zoom. Worst they can do is say no. 

...absolutely @Chris Moore!...and MANY thanks to @Bejeeber for pointing out the tele-med possibilities....i smack my head, well, more than usual, that it never occurred to me...

...these are the states Dr Ravitz covers: California, Colorado, Florida, Georgia, Michigan, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Texas.

...she's in Manhattan....do you know of any local clusterhead patients of hers.... and their thoughts?

[trjonas]

3 hours ago, jon019 said:

...absolutely @Chris Moore!...and MANY thanks to @Bejeeber for pointing out the tele-med possibilities....i smack my head, well, more than usual, that it never occurred to me...

...these are the states Dr Ravitz covers: California, Colorado, Florida, Georgia, Michigan, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Texas.

...she's in Manhattan....do you know of any local clusterhead patients of hers.... and their thoughts?

I don't know any of her local patients, but I'm not sure if you're asking me or @Chris Moore or @Bejeeber ...

 

[jon019]

.....sorry, asking Chris....he's in NYC.......

[trjonas]

10 hours ago, Chris Moore said:

I feel like many, many doctors (neurologists included) would be open to facetime/zoom appointments right now because of COVID. I had a zoom appointment with my regular doctor (not related to COVID) and it was pretty normal. I'd definitely spend the time looking up neuros that are covered by your insurance and just call their office and see if the doctor will see you via zoom. Worst they can do is say no. 

I really, really hope that your headaches can be treated with something as simple as indomethacin. That would be so amazing. Sending all my support <3 

That *would* be so amazing! But in the event I can't get anyone to prescribe me some, I did some online searching and found that Boswellia serrata acts similarly to indo, enough so that they're studying it for people who can't or who can no longer tolerate indo. Apparently it may work for clusters too, not just HC. So I ordered some.

From a Dr. Alexander Mauskop at http://www.nyheadache.com/blog/boswellia-an-herbal-remedy-for-headaches/:

"Boswellia extract may relieve migraine, cluster and indomethacin-responsive headaches. Boswellia serrata (Indian frankincense) has been long reported to relieve migraines. 

The dose of Boswellia was 350 to 700 mg three times a day. All four patients failed at least three standard preventive medications for cluster headaches, such as verapamil (Calan), topiramate (Topamax), and lithium. It is very surprising that an herbal remedy helps what many consider to be the most painful type of headaches. 

Dr. Eric Eross reported that Boswellia extract was also reported to help another very severe headache type – indomethacin responsive headache syndrome. Of the 27 patients with this type of headaches who were given Boswellia, 21 responded. The starting dose was 250 mg three times a day and then the dose was increased as needed, although it is not clear what the highest dose was. Indomethacin is a very strong non-steroidal anti-inflammatory medication, but it also tends to have strong gastro-intestinal side effects.

The mechanism of action of Boswellia is not entirely clear, but it seems to have anti-inflammatory properties similar to aspirin. Obviously, it does more than that since aspirin is usually ineffective for cluster or indomethacin-responsive headaches."

Also this study, though it deals with HC and not clusters too: https://n.neurology.org/content/94/15_Supplement/5250

And here's one dealing with chronic clusters: 

"Cluster headache (CH) is an extremely severe and debilitating trigemino-autonomic pain syndrome. About 10% of patients with CH manifest a chronic form CH (CCH). 

Extracts of Boswellia serrata have been clinically studied for the treatment of many inflammatory conditions such as osteoarthritis and rheumatoid arthritis (3). The resin from Boswellia Serrata contains a number of biological actives called pentacyclic triterpene acids, which give the extract its anti-inflammatory and analgesic properties, with boswellic acid the major active ingredient (4). These acids have been demonstrated to interfere with the body’s natural inflammatory response by inhibiting cytokines and leukocyte activity. 

The present study aims to evaluate the long-term efficacy of oral Boswellia Serrata (Sallaki H15) on headaches and disturbed sleep in (4) patients with CCH.

The effects were long-lasting in 3 patients (mean 15 months) and transient (6 months) in one patient. The rapid improvement of nocturnal pain within weeks is similar to the analgetic effect observed in recent trials using Boswellia Serrata in cancer pain 

The mechanisms of how Boswellia Serrata reduces pain in CCH remain unclear. Boswellic acids, constituents of Boswellia extract, have subsequently been identified as selective redox independent noncompetitive inhibitors of both 5-lipoxygenase, the key enzyme in leukotriene biosynthesis and human leukocyte elastase. Proinflammatory cytokines, such as leukotrienes, are known to play a role in the pathophysiology of CH. This study provides Class IV evidence that oral Boswellia Serrata (Sallaki H15) reduces the intensity and frequency of headaches in patients with CCH."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3620238/&nbsp;

I ordered a bottle from Amazon (which arrived fast) and a sample bottle of 30 capsules from here - produced by the same Dr. Eric Eross mentioned above, who seems to be a specialist in HC, in Arizona:

https://store.gliacin.com/

According to other data on his website, it takes an average of 13 days for someone with HC to respond to it (78% of those with HC do) vs. 3 days for indo, but then it is really a close match to indo for effectiveness. For people with regular chronic / high frequency migraine, it took an average of ~40 days. I didn't see any such data on his website for cluster headaches, alas, but again, he seems to specialize in HC more. 

Boswellia serrata seems to be MUCH better tolerated than indo, with almost exponentially less side effects. It's not a pharmaceutical, it's an herb. 

A few more stats from https://n.neurology.org/content/94/15_Supplement/5250:

Pre-treatment: 7.5 average pain / 30 headache days a month for HC patients
Indo: 3.3 average pain / 13 headache days a month
SBSE: 3.6 average pain score /16 headache days a month respectively

The overall perceived benefit score (0–10) of indomethacin was 7.7 and 7.8 for boswellia serrata. 

Subjects reported side effects with indomethacin 72% of the time and 15% of the time with boswellia serrata. 

Migraine Disability Assessment Scores were 52 (pre-treatment), 20 (while on indomethacin) and 16 while on boswellia serrata. 

 

Maybe this has already been discussed on the forums (if so I just came to it a different way, via Google , but I was very glad to find out about it! 

[Bejeeber]

Wouldn't that be most excellent if the Boswellia were to be found as effective for you as it was for the majority of those in the study - fingers vigorously crossed for you @trjonas!

[trjonas]

15 hours ago, Bejeeber said:

Wouldn't that be most excellent if the Boswellia were to be found as effective for you as it was for the majority of those in the study - fingers vigorously crossed for you @trjonas!

Me too! I hope earnestly that the boswellia info might be helpful to others on this forum too. 

[trjonas]

@Bejeeber@spiny@Chris Moore@jon019A quick update... after working on it every day this week (since Sunday; today is Friday) to my surprise and delight I was able to talk my neurologist via MyChart into a prescription for indo! She didn't like the idea at first but I kept asking and today she agreed to let me try it. I am so happy!! I wrote on another thread that either it will be effective (which would be WONDERFUL WONDERFUL) or at least I'll know I don't have HC or any of the other indo-responsive headaches. 

I understand from @CHfatherthat a person can actually take a while to respond to indo, especially if one has had it for a long while, but I'll update you when either I respond or when I run out of the indo.

Thank you for your support!  

[CHfather]

trjoas,

Bless you a hundred times for your perseverance and your positive mindset.

[Bejeeber]

What CHf just said!

With the determined and open minded approach you're taking I'm feeling confident you are going to find yourself in a much improved place.

[Jteira]

@trjonas, busting does work for my hemicrania continua. It seems to require a rather aggressive dosing schedule, like many chronic CH suffers.
 

I had minimal to no response to indomethacin. But I am resistant to NSAIDS. I can’t comment on the boswellia, because I was already mostly pain free by the time I heard about it.

[trjonas]

22 hours ago, Jteira said:

@trjonas, busting does work for my hemicrania continua. It seems to require a rather aggressive dosing schedule, like many chronic CH suffers.
 

I had minimal to no response to indomethacin. But I am resistant to NSAIDS. I can’t comment on the boswellia, because I was already mostly pain free by the time I heard about it.

Jteira, you have HC?? Thank you for letting me know about this. I'm so sorry about the indo, but so glad to hear you were able to get to pain free, I'm thinking due to the busting. And that's great for me to know too. I figured it might take a number of busts to get there, but I'm relieved to know that get there you did! With HC.

Seriously, this is encouraging. Thank you!

[trjonas]

On 3/26/2021 at 9:05 PM, Bejeeber said:

What CHf just said!

With the determined and open minded approach you're taking I'm feeling confident you are going to find yourself in a much improved place.

You guys are seriously great! You're such an encouragement to me, with all your help and your support. I feel like @Chris Moore said he felt after he had found you and this forum. 

I really, really appreciate you. Thank you @CHfather @spiny@Bejeeber @Chris Moore @jon019, and a thousand blessings to you for treating me so kindly and taking a newbie under your wings!

Edited March 28, 2021 by trjonas
Tag people

[Jteira]

@trjonas, yes, I have what my neuro has described as a weird HC, because I have all the classic symptoms, but little to no response to indo.

A few people have contacted me on FB recently regarding HC and busting. Are you one of them? My first name is Jessica.

I am pretty much pain free with psilocybin. It took several heavy doses   (5G) once a week to get the headache broken and pain free, and weekly doses of 1 gram keep me here. The pain free time only occurs at about a week at a time.

[trjonas]

14 hours ago, Jteira said:

@trjonas, yes, I have what my neuro has described as a weird HC, because I have all the classic symptoms, but little to no response to indo.

A few people have contacted me on FB recently regarding HC and busting. Are you one of them? My first name is Jessica.

I am pretty much pain free with psilocybin. It took several heavy doses   (5G) once a week to get the headache broken and pain free, and weekly doses of 1 gram keep me here. The pain free time only occurs at about a week at a time.

Hi @Jteira! It's great to meet you, Jessica. I wasn't one of the ones to contact you on FB, and I'm so glad you answered me here. I read on another forum that someone else with HC had not responded that well to indo, and also ended her(?) headache with large doses of psilocybin. I would like to do that, but have no access to vitamin M and am too incapacitated right now to be able to grow any. I've been RC busting as a result. If I can get past this headache, then I'll be able to. I'm also trialing indo right now but am only on the second day at a low dose. 

I also read a medical study where indo response for people with otherwise clearly identifiable HC was not complete. One had an initial response, but it only lasted one day and I believe they (doctors) were not able to achieve anything further with him even though they kept him on the indo and raised the dosage.

In other studies they found other unusual patients with HC, like those with exacerbations of 4 months in length (sounds like me) and those with auras, which aren't normally associated with HC. Those who did these studies speculated that there are types of HC and/or other trigeminal autonomic cephalalgias that have not been yet identified by medical science, or that HC and TACs are still imperfectly defined.

Your specific measurements are SO helpful to me. Thank you and bless you! 

[trjonas]

 

On 3/28/2021 at 2:46 AM, Jteira said:

@trjonas, yes, I have what my neuro has described as a weird HC, because I have all the classic symptoms, but little to no response to indo.

A few people have contacted me on FB recently regarding HC and busting. Are you one of them? My first name is Jessica.

I am pretty much pain free with psilocybin. It took several heavy doses   (5G) once a week to get the headache broken and pain free, and weekly doses of 1 gram keep me here. The pain free time only occurs at about a week at a time.

@Jteira, is that 5G dried or fresh?

[Leo Sticinski]

On 3/16/2021 at 6:10 PM, trjonas said:

I'm new to these boards and have found them so, so helpful! Thank you to all for giving of your time and expertise on these forums!

BACKGROUND: I'm a chronic clusterhead thanks to a concussion in August 7, 2019. Since then I have never been without at least a 3 on the cluster hit scale (shadows?) and those rarely; no remissions even of a day. My high cycles tend to go in sort of bell curve, with the first 3 weeks milder than later, then ramping up very quickly and lasting for about 3 months in the acute phase. My current high cycle started on December 13, 2020, became acute on January 2, 2021, and the peak started January 29, 2021. The last time I had a break where a hit went down from a very high kipper rating (lowest 7) even a notch or two was the evening of January 28. One 180-minute hit ends and the next one begins, with no break or difference in kipper level between. (This current cycle has been without any rescue at all and maybe that's why it seems like it's longer and I'm still in the peak.)

Now, thanks to Spiny, a forum moderator, I have found out about the wonders of welding O2 (couldn't get a prescription from my doctors) and have ordered my supplies. My question is this: you're supposed to start at the onset of a hit for the O2 to be effective. When the hits all run together and are of the same kipper (?) strength, how do you know when the onset is / when to start applying oxygen?

Have any other chronic clusterheads run into this issue? Can anyone give me any sort of insight as to when to start the oxygen? If there's literally no way to detect the onset, do I just try different times of day, e.g. if 12 PM doesn't work, try 2 PM and see if I can hit close to the start of an 180-minute hit? I don't want to waste the oxygen; it's not just that it's expensive, but that I'll run out, possibly without any results, if I'm using it so often, trying to stumble upon a time of onset. 

(Unfortunately I didn't have very precise records of times when I wasn't in peak, because the same thing would happen: one 180-minute 4-kipper, say, would run right into the next one. The only periods I can ever recall as being different / better were in the evening time but alas, not knowing about O2 then, I didn't write down the times.)

Thank you!!

 

P.S. I hope I'm using the terminology right! Please forgive any lingo errors; they're not intentional. E.g. I'm guessing that "kipper" is a severity scale

I have used oxygen for years now. My headaches are episodic so I sympathize with your situation. I use oxygen at the onset, as soon as you feel one coming on.

With regards to using the oxygen you may want to bite the bullet and buy an oxygen machine. I would check online for one. It's been worth it to me.

Good luck!

[Jteira]

@trjonas, that is dried. It is a whopping dose.

[trjonas]

2 minutes ago, Jteira said:

@trjonas, that is dried. It is a whopping dose.

Thank you so much, @Jteira!

 

[CHfather]

49 minutes ago, Leo Sticinski said:

With regards to using the oxygen you may want to bite the bullet and buy an oxygen machine. I would check online for one. It's been worth it to me.

Leo, do you mean a concentrator (makes O2 out of room air)?  For many people, those are not really fully effective, for two main reasons: the O2 they make is less than 100 pure (there's still some room air in it); and the regulator doesn't go high enough to support fully effective breathing.  I'm glad it works for you, but as I say, they're not really right for everyone. (And I suppose we should consider what "works for you" means--with a fully optimized system, many/most people can abort an attack in ten minutes or even considerably less. If you're getting that result, it's great.  If not, a cylinder-based system might show better results.)

[trjonas]

On 3/26/2021 at 11:46 PM, Jteira said:

@trjonas, busting does work for my hemicrania continua. It seems to require a rather aggressive dosing schedule, like many chronic CH suffers.
 

I had minimal to no response to indomethacin. But I am resistant to NSAIDS. I can’t comment on the boswellia, because I was already mostly pain free by the time I heard about it.

@JteiraA few last questions for you, if you can stand it!

- I'd love to friend you on Facebook but couldn't find you. What's your FB handle? (If you don't mind, that is)

- Chris Moore, on this forum, recommended taking an anti-nausea OTC pill before busting with seeds. Does the same thing apply to busting with MM, do you know?

- Since you have HC... did you get slapbacks with MM busting or is that something unique to people with cluster headaches?

I'm trialing the indo but it's early days, so I can't say anything definitive on that front yet. 

Thank you for your patience with me! I've really, really appreciated your input so far - more than you know. 

[Jteira]

@trjonas, 

- I take a pretty large dose of zofran each time a half hour before taking mm. 

-I have never had a rebound headache after mm. My regular headache returned immediately after my first couple of sessions, but I have never had what could be described as a rebound or slapback. I do know a few people who get migrainous headaches after dosing. 

[trjonas]

46 minutes ago, Jteira said:

@trjonas, 

- I take a pretty large dose of zofran each time a half hour before taking mm. 

-I have never had a rebound headache after mm. My regular headache returned immediately after my first couple of sessions, but I have never had what could be described as a rebound or slapback. I do know a few people who get migrainous headaches after dosing. 

Jessica @Jteira, you are the best! Thank you for this. I have some Zofran so I'm all set on that front. And you've set my mind at ease about slapbacks. SO appreciated!