[Any help and ideas for treatment ? Hemicrania continua + hEDS]

P.S. I also wrote this in response to @Dipper, in case it helps your friend:

 

Also in the meantime via Amazon... you may be able to alleviate some of indo's side effects by using herb / spice extracts. I know that might sound silly but I'm taking indo now and ginger has actually done the trick, at least at low doses.

Turmerin is another I'm going to try, and I'm waiting for Marshmallow Root (coats and soothes the GI tract, guards against heartburn), plantago major / Greater Plaintain (counters irritation and inflammation in the stomach and bowels, combats gastritis, #3 :O, and can repair damaged mucosal tissue like the gut wall - I purchased a kind not made with Greater Plantain seeds, since its seeds can be a laxative which is not my intent), and Artmeisia (wormwood) which is said to prevent ulcers induced by indomethacin and has gastroprotective properties. 

I know the idea of herbs might seem kind of weak compared to formidable indo side effects, but I haven't found ginger to be so, and I had to detox off pharmaceuticals in order to bust (which I had just started doing when HC was suggested), and after the trouble of the detox from those, I didn't want to get back on another Rx to combat indo's side effects. Also, boswellia serrata (see my above post) is an herb, and it doesn't seem weak at all. 

Another person with HC on these forums was able to become pain free by busting, so that's another option, though he/she said it takes a pretty aggressive busting regimen to do it, as with CH.

 

I hope your friend gets better! I so relate to the part about not know how much longer she can survive. SO much.

[Any help and ideas for treatment ? Hemicrania continua + hEDS]

Hi, I know I'm late to this thread but if it helps I just wrote an answer to a post by @Dipperabout Gliacin, a specialized extract of boswellia serrata. I believe they will ship it internationally from the US. It is an alternative to indo that does much the same thing as indo, but takes a bit longer to work, and most importantly has FAR fewer side effects. Here's my post:

 

I found a really good alternative that medical studies have shown could be as effective as indo, but without the side effects, though it takes longer to take effect. It's boswellia serrata and there's a doctor in Arizona who specializes in HC and who now produces a specific Boswellia serrata extract, Gliacin, that he has verified effective in HC patients (and sometimes migraine and cluster patients, but it works fastest in HC patients). 

Here are a few snippets from what I found:

*

Subjects with confirmed (demonstrated an absolute response to therapeutic doses of indomethacin) hemicrania continua (n=37) completed an extensive medical history detailing treatment efficacy, tolerability and safety that occurred while using indomethacin and specialized Boswellia serrata extract (SBSE) independently. 

Once at therapeutic doses, indomethacin took on average 3 days to become effective, whereas SBSE took 13 days. 
Migraine Disability Assessment Scores were 52 (pre-treatment), 20 (while on indomethacin) and 16 while on SBSE. 

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 SBSE. 

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

Side effects with indomethacin versus SBSE were nausea (38%/8%), dyspepsia/upper abdominal discomfort (29%/4%), fatigue (25%/15%), insomnia (25%/23%), poor concentration (21%/8%), “spacey” feeling (21%/4%), poor memory (17%/8%), bloating (17%/15%) and dizziness (8%/0%). 

SBSE was void of adverse events whereas indomethacin was associated with easy bleeding/bruising (5%), anemia (5%), anaphylaxis (5%), gastric ulceration (5%), intestinal ulceration (5%), lower gastrointestinal bleeding (5%), hemorrhoidal bleeding (8%) and impaired renal function (8%).

Source: https://n.neurology.org/content/94/15_Supplement/5250

*

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.

Source: Written by Dr. Alexander Mauskop, http://www.nyheadache.com/blog/boswellia-an-herbal-remedy-for-headaches/

*

This is more about cluster patients but just in case someone happens upon my post later and doesn't have HC:

 

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.

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3620238/ 

*

The doctor's name is Dr. Eric Eross (the one who specializes in HC and developed a specific boswellia serrata for it). You can see much more info on his website at https://store.gliacin.com including recent research and testimonials by patients. (Sorry, I didn't save the home page link, just the store part of it) It takes a while for the Gliacin to arrive, though, so I ordered a 683 mg tincture and 500 mg capsules of boswellia serrata via Amazon in the meantime. Also, Dr. Eross will take emails from people wanting to ask questions about the Gliacin they ordered, how to take it, etc. The contact info is on his website but briefly, the phone number is 855.999.4542 and at least one of the email addresses is gliacin@live.com. 

I hope this helps you!

[Severe migraine during attack]

On 2/21/2021 at 11:58 AM, Siegfried said:

Hello Squizzlet,

I am having attacks of paroxysmal hemicrania during my migraine attacks. Once the migraine reached a certain intensity, the hemicrania attacks start. They go around 7-10 min per attack with breaks ranging from 15 min up to 1 hour and can go on forever. If a PH attack is coming, the migraine disappears almost completely and once the attack is over, a few minutes later, the migraine starts to come back. Indomethacin only works for the PH but not for the migraine. Now I take candesartan for migraine  and that works really well. I am on 16 mg. I had migraine attacks nearly every day and that now has diminished to once per two weeks. When the migraine is not there, the PH also stays away. 

So I would say yes it is possible. Problem is, currently migraine and CH are seen as two completely separate entities. That was not in the past. They called it sometimes cluster-migraine. I think cluster-migraine does exist and it was a more correct approach than what we have now. Why ? There are too many cases of hybrid migraine-CH but they keep on saying it does not exists. I have seen quite some neurologists and they all say the same. Very often, if a CH patient has also migraine, it blends together in a hybrid kind of headache with characteristics of both. I also can see that in the more recent studies, where the researchers have to admit there is neurological overlap between the two entities. 

Just ensure you have been through the entire protocol of CT scan etc... to be sure its a primary headache and there is nothing else going on.

Anyway wish you all the best and hope you find something to keep it under control. That can take a long time but soon or late you will find something 

siegfried

 

I have also seen this in the medical studies - same as with migraine / HC (hemicrania continua). I think that for how long migraines and headaches have been around, medical science is dismayingly WAY behind the 8 ball. I say this not to be negative but to say not to take what doctors say as gospel, because plainly medical science itself is still uncertain of classifications and many doctors are not aware of all the treatment options there are. Not just busting, but other options beyond the usual pharmaceuticals that don't work very well. 

[Hemicrania continua diagnosis]

@Dipper Also in the meantime via Amazon... you may be able to alleviate some of indo's side effects by using herb / spice extracts. I know that might sound silly but I'm taking indo now and ginger has actually done the trick, at least at low doses.

Turmerin is another I'm going to try, and I'm waiting for Marshmallow Root (coats and soothes the GI tract, guards against heartburn), plantago major / Greater Plaintain (counters irritation and inflammation in the stomach and bowels, combats gastritis, #3 :O, and can repair damaged mucosal tissue like the gut wall - I purchased a kind not made with Greater Plantain seeds, since its seeds can be a laxative which is not my intent), and Artmeisia (wormwood) which is said to prevent ulcers induced by indomethacin and has gastroprotective properties. 

I know the idea of herbs might seem kind of weak compared to formidable indo side effects, but I haven't found ginger to be so, and I had to detox off pharmaceuticals in order to bust (which I had just started doing when HC was suggested), and after the trouble of the detox from those, I didn't want to get back on another Rx to combat indo's side effects. Also, boswellia serrata (see my above post) is an herb, and it doesn't seem weak at all. 

Another person with HC on these forums was able to become pain free by busting, so that's another option, though he/she said it takes a pretty aggressive busting regimen to do it, as with CH.

Again, I hope this helps!

[Hemicrania continua diagnosis]

Hello @Dipper from another newbie... I too thought I had cluster headaches but other kind and knowledgeable people on this forum suggested I might have HC, so who knows... yet. I'm trialing indo now, but I wasn't actually sure if I'd be able to get it, so I looked up alternatives.

I found a really good alternative that medical studies have shown could be as effective as indo, but without the side effects, though it takes longer to take effect. It's boswellia serrata and there's a doctor in Arizona who specializes in HC and who now produces a specific Boswellia serrata extract, Gliacin, that he has verified effective in HC patients (and sometimes migraine and cluster patients, but it works fastest in HC patients). 

Here are a few snippets from what I found:

*

Subjects with confirmed (demonstrated an absolute response to therapeutic doses of indomethacin) hemicrania continua (n=37) completed an extensive medical history detailing treatment efficacy, tolerability and safety that occurred while using indomethacin and specialized Boswellia serrata extract (SBSE) independently. 

Once at therapeutic doses, indomethacin took on average 3 days to become effective, whereas SBSE took 13 days. 
Migraine Disability Assessment Scores were 52 (pre-treatment), 20 (while on indomethacin) and 16 while on SBSE. 

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 SBSE. 

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

Side effects with indomethacin versus SBSE were nausea (38%/8%), dyspepsia/upper abdominal discomfort (29%/4%), fatigue (25%/15%), insomnia (25%/23%), poor concentration (21%/8%), “spacey” feeling (21%/4%), poor memory (17%/8%), bloating (17%/15%) and dizziness (8%/0%). 

SBSE was void of adverse events whereas indomethacin was associated with easy bleeding/bruising (5%), anemia (5%), anaphylaxis (5%), gastric ulceration (5%), intestinal ulceration (5%), lower gastrointestinal bleeding (5%), hemorrhoidal bleeding (8%) and impaired renal function (8%).

Source: https://n.neurology.org/content/94/15_Supplement/5250

*

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.

Source: Written by Dr. Alexander Mauskop, http://www.nyheadache.com/blog/boswellia-an-herbal-remedy-for-headaches/

*

This is more about cluster patients but just in case someone happens upon my post later and doesn't have HC:

 

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.

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3620238/ 

*

The doctor's name is Dr. Eric Eross (the one who specializes in HC and developed a specific boswellia serrata for it). You can see much more info on his website at https://store.gliacin.com including recent research and testimonials by patients. (Sorry, I didn't save the home page link, just the store part of it) It takes a while for the Gliacin to arrive, though, so I ordered a 683 mg tincture and 500 mg capsules of boswellia serrata via Amazon in the meantime. Also, Dr. Eross will take emails from people wanting to ask questions about the Gliacin they ordered, how to take it, etc. The contact info is on his website but briefly, the phone number is 855.999.4542 and at least one of the email addresses is gliacin@live.com. 

I hope this helps you!

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

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!

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

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!

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

@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!  

[Anyone from Charleston, SC or nearby?]

Newbie here... I hope this is okay to ask! I noticed that some of you seem to know the cities where each other lives, and wanted to see if any Clusterheads are in my area.

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

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. 

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

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! 

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

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 ...

 

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

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!

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

Hi Spiny and Bejeeber,

The good news is that the doctor's office responded very promptly! The bad news is this is what they said:

Thanks for getting back to us, and we are now seeing the notes that you included in the appointment booking. Unfortunately, we're not able to see any patients in any capacity that reside in states outside of our licensure; this isn't necessarily simply an insurance issue, it is a liability & malpractice coverage issue. 

 

Unfortunately these type of coverage policies do not cross state-lines (which is a bigger issue regarding the entirety of the Healthcare sector in and of itself). 

We'll go ahead and cancel the appointment for you, but we can certainly add you to our list for outreach purposes if & when we add SC to our states of licensure (we are continually working on adding additional states).

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

15 hours ago, Bejeeber said:

OK, I got myself intrigued went back to that telemedicine site - now I'm seriously considering it for myself. Someone tell me if I've gone cuckoo with this angle. 

(Busting has been working for me lately, but if I am to follow my own preachings, I should have a neuro lined up and already consulted with, for my backup / contingency planning)

I'm reading testimonials with stuff like "after 18 years being misdiagnosed and medicated incorrectly, Dr. Risa Ravitz diagnosed my condition as chronic Cluster Headaches and prescribed me medicine that changed my life!...."

 

 

I just booked an appointment for Monday evening at 6:30 PM, the earliest available. I'll let you know how it goes!

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

15 hours ago, Bejeeber said:

OK, I got myself intrigued went back to that telemedicine site - now I'm seriously considering it for myself. Someone tell me if I've gone cuckoo with this angle. 

(Busting has been working for me lately, but if I am to follow my own preachings, I should have a neuro lined up and already consulted with, for my backup / contingency planning)

I'm reading testimonials with stuff like "after 18 years being misdiagnosed and medicated incorrectly, Dr. Risa Ravitz diagnosed my condition as chronic Cluster Headaches and prescribed me medicine that changed my life!...."

 

 

Wow! I am seriously going to check this out. THANK YOU and bless you!

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

29 minutes ago, jon019 said:

......now i got no qualms....you need a new neuro....a headache specialist .....anyone with ANY knowledge of CH knows you don't let a clusterhead just ride these out w/o rescue meds (oxygen, triptans, ergots, ketamine even....)....there's a fricken good reason they are called "suicide headaches"...SHEESH, this pisses me off.....

...in cases where diagnosis is undetermined/questionable it is not at all uncommon for an Indo trial to rule out HC.....when/if it works it's like a miracle....(EDIT to add: and another reason for a specialist is to get the right dosage...too little and you think it doesn't work when it may be "THIS" dosage doesn't work...)

Jon, bless you!! I 100% feel the same way. If I can break this high cycle (of whatever it is) then I can pursue another neurologist. For now I'm too disabled to be able to search out and go see another one and fill out their new patient paperwork etc. - I have slowly trained myself to be able to sit and work at a computer, though it isn't pleasant, but during peak in a high cycle (now, which has lasted since Jan 29) I can't even walk around my own house with my eyes open. I'm no defeatist - usually more like a warrior, but one has to be realistic. I'd be a danger to everyone driving right now. 

That's why I'm hoping busting will work on a cluster OR HC. I did just find someone who had some success with it, though not in this forum. 

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

 

11 hours ago, spiny said:

Bejeeber is correct. A check for HC seems to be in order since you have no pain free time between hits. 

Indo. can be hard on your stomach, but provides great relief. I would suggest getting in touch with you neuro to do a test run with it to see if it helps! 

Fingers crossed for you!!!

Hi Spiny and Jon, I did look at it very carefully before, but the fact that I have definite cycles (high and low) made me think clusters rather than HC. 

> Hemicrania continua is a rare, benign headache disorder characterized by a low-level baseline hemicranial headache with superimposed exacerbations of more severe pain. Exacerbations last from minutes to days 

My "exacerbations" last about 3 months, so it didn't seem like this was a match. I'd still be more than game to try indo (I did read about it) but my neurologist is the one who wouldn't prescribe a rescue and wouldn't even prescribe Verapamil instead of Topamax as a preventative, so I'm thinking 0% hope there. 

Still... from what you know:

- Does oxygen work for HC? (I've tried two rounds so far, following all instructions diligently, with zero effect... but again, I have no idea as to time of onset)

- Does busting work for HC?

 

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

7 hours ago, spiny said:

I have 15 minutes between hits. So, that gives me a time frame for the O2. 

I suspect that you get a hit that ramps up and back down again? When it ramps down I suspect that you will a short period that is about as pain free as you get and then it goes up again. I would down the energy drink or caffeine then and hit the O2. I start at onset, you would start at minimum to see if that works.

Jon's input is solid, so read and use that info too!!! As you learn to work it, you will learn the methods that work best for you. The objective is to get the CO2 out of your body and pure O2 into it. So, exhale with a crunch at the end when you begin, then inhale your O2. Ditch the CO2 is the objective I suppose you might say.

ATB!

> I suspect that you get a hit that ramps up and back down again? When it ramps down I suspect that you will a short period that is about as pain free as you get and then it goes up again. 

Huh. Maybe I'm not normal. When I'm in a high cycle peak it goes something like this for 24 hours: 8 kipper from rising to bedtime, fall asleep with it, wake up with it, next day repeat. No 15 minutes between hits, no 30 seconds between hits, etc. One hit just runs into the next. 

I am SO ready to try the oxygen! I just hope I can get it to work given that I don't know when onset is.

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

On 3/16/2021 at 8:46 PM, jon019 said:

...see the attached Kip scale...a beloved fellow clusterheads interpretation. it doesn't fit mine, but bear in mind the typical pain scale you'll get at the doc shop doesn't represent us either. it's importance is as a reference...kind of an "in reference" that clusterheads of an era used (use) to talk to each other in the same language.... 

The Kip Scale (clusterheadaches.com)

 

....there's really no way for us to gauge how O2 is going to work for you....timing/flowrate/breathing techniques/etc....took me hours of sometimes bitter experience to figure what works for me.....then it changes and ya start learning all over again....

....a few basics: get yourself a non rebreather mask (no holes/bag attached, see ClusterO2 Kit - Clusterheadaches.com - Online Store ) so you are getting 100% O2, start out with higher lpm flows (15-25+) and work your way down til ya find the sweet spot, if any. try various breathing techs like hyperventilation (most popular), slow breathing, breath and hold, a combo. most find it important if not critical to start at the first sign of a hit. many, like me, are benefitted by same time quick downing of an energy drink (min 120 mg caffeine/1500 mg taurine).....and staying on O2 for 5-10 mins after a hit aborted. since you are unsure when to start, you are just gonna have to try.... and record/remember your results. in my case, i put a time limit of 20 mins on any attempt because by then i knew it wasn't gonna work....and no sense wasting O2. in reality,  i would probably stop sooner because i just "knew" ...and cannot explain how...you'll know......

Thanks to Spiny, I'm almost ready to go with the O2! I have my 125 cf oxygen tank (full) and the mask you recommended. I'm just waiting for the regulator to arrive, which it's supposed to tomorrow.

I had done some research on these forums on breathing techniques, but your comment is one of the most helpful. Thank you!! I also saw about the caffeine. I had been told to get OFF caffeine to help with the migraines so I don't have much, but I will find something! I do have taurine. And I am DEFINITELY going to record my results each time. 

20 minutes max = SUPER good to know.

> most find it important if not critical to start at the first sign of a hit

Therein is my problem. 

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

21 minutes ago, Jteira said:

Dr. Schindler at Yale is looking for people with post concussive headaches to participate in a clinical trial, FYI

Good to know! I'll check it out! Thank you much, Jteira

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

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