trjonas
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Posts posted by trjonas
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My results... I ordered this nasal spray and have been testing it since I received it. It increased my HA by a couple of notches each time, really unpleasant. But it was worth a try, and also, I have HC with suspected underlying CCH or chronic migraine, so I'm not like the others.
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@CrystalAnn0721, where are you located? If you're near Charleston SC (US) I can give you some welding O2.
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Thank you for this post! I've ordered this nasal spray and will see if it will help me too.
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7 minutes ago, Bejeeber said:
As a fairly textbook episodic CH'er I can say that once an attack has gotten a real foothold I've never been able to knock one back with O2
It's more of a catch it at onset or forget about it deal, so I feel like I understand where you're coming from @trjonas with not being able to tell if O2 would be of any use, since your onset was months ago!
Thank you @Bejeeber! I love your understanding!
@RushI think you're right about chronic clusters still having at least short breaks between them, at least what I've read on this forum.
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@RushI know! But that long after onset, I think the oxygen doesn't have a chance. Either that or I have (a) pure HC or (b) HC and chronic migraine instead of HC and CCH.
Have you trialed indomethacin yet?
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2 hours ago, Rush said:
I know this thread is about a month old, but just wondering how you made out with the O2?
Hi @Rush, you're so nice to ask! This is what I just posted on another thread:
I also trialed indo at the suggestion of other (wonderful) folks on this forum. It took 2-3 weeks of titrating up to 225 mg but I did have a partial response of about 50% improvement, which, since I've been at a 10 since late January, felt WONDERFUL.
I assume that because I only partially responded, I must also have an underlying condition of CCH or chronic migraine, but now you make me wonder, @Siegfried! Thank you for posting about that. It's possible that the longer I stay on the indo, the more I'll respond.
Also, I'm now busting to try to get out of this 10 cycle or exacerbation or whatever it is, so that could be playing a big part. I think it is because I just had my third dose and I'm seeing cumulative effects paired with the indo.
I've had zero response to oxygen. But because my HC or CCH is constant, I have no idea when the onset of a hit is, and other clusterheads say oxygen is only effective if taken at the beginning of a hit. As far as I can tell, the beginning of my current hit was on January 29, 2021, and if so, it's waaaaay too late for oxygen. (Today is April 21, 2021)
However, I've also had almost no side effects from the indo. As @MoxieGirlsays, I always take it with a lot of food, especially high-fat food (studies say this helps amp up the response to indo) and from the beginning I took a whole bunch of herbal gastroprotectorants: ginger, marshmallow root, great plaintain, arteminsin with it. I just added 20 mg Prilosec with each dose at the advice of my neurologists' PA (physician assistant).
For anyone with HC who can't tolerate the indo, try Gliacin. I know a LOT of people on a HC Facebook support forum who use that successfully instead of indo because they too had terrible side effects from the indo. Gliacin is a formulation of the herb boswellia and was developed by a doctor with HC. It takes longer to respond to it (up to a month) but it comes without most of the side effects of indo. Check out the research on his website: https://www.gliacin.com/. @kat_92@Zoejarvis
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On 8/18/2020 at 3:46 AM, Siegfried said:
Hi Zoe,
Thanks for your reply ! I am very glad to see other people here with the hemicrania syndrome as there aren't that many around.
Many people in this forum think they have hemicrania or show the symptoms but most of them fail the indomethacin test.
From what I understand, paroxysmal hemicrania are short cluster-like attacks but no background pain in between. PH is almost always chronic but there is also a rare episodic variant.
Hemicrania continua consist of 2 parts. A continuous background pain that is there nearly 24/7 and exacerbation on top of that background pain. These 'attacks' can look like whatever what. Sometimes they can mimic a migraine attack, a CH attack, a PH attack.
I have the short PH attacks but I also have a lot of continuous background pain. At first the indomethacin only worked against the short attacks so it was labeled PH and the continuous pain was labeled as chronic migraine. But what do I see now ?? The longer I take the indomethacin, the better it works and it now also works against the continuous headache ! So maybe I have HC and not PH. I read a study lately (but can not find it back) that concluded that PH and HC are the same entity and often a patient can transform from HC to PH or backwards.
I have a very good response with oxygen, which is quite weird. So currently oxygen and indomethacin is what I use. I used a lot of triptans in the past but these are barely working so I do not take them anymore.
I seem to be pain free during long dry spells, like heatwaves. But once the weather become a bit unstable it starts again. We had a heatwave here for 10 days and I had only 2 days pain. but as soon as the low pressure kicked in, headache came back. Always wake up at night in the early hours with pain in my eye, like someone punched me. When I get up I do 20 min of oxygen which can bring relief for some time. If it is too strong, I take 100 mg indomethacin. It starts to work after 1,5 hours and keeps me pain free for 7 hours. If it comes back after 7 hours, I take another 50 mg. But I try to keep my indocin intake to a minimum so if it is not too bad, I try to keep it at bay with oxygen.
I have always headaches, 24/7, 365 days a year. But it is mostly not so bad... more like a pressure on my eye or some kind of migraineous feeling. If I let it, it will get stronger and escalate into PH attacks or sometimes like strong jabs and jolts. Before I got indomethacin, I suffered much more. With the indomethacin, it is very good under control and fortunately I have very few side effects.
I added a study here about HC and another one about PH ... one of the most detailed I ever found about the subject.
Best Regards !
siegfried
I also trialed indo at the suggestion of other (wonderful) folks on this forum. It took 2-3 weeks of titrating up to 225 mg but I did have a partial response of about 50% improvement, which, since I've been at a 10 since late January, felt WONDERFUL.
I assume that because I only partially responded, I must also have an underlying condition of CCH or chronic migraine, but now you make me wonder, @Siegfried! Thank you for posting about that. It's possible that the longer I stay on the indo, the more I'll respond.
Also, I'm now busting to try to get out of this 10 cycle or exacerbation or whatever it is, so that could be playing a big part. I think it is because I just had my third dose and I'm seeing cumulative effects paired with the indo.
I've had zero response to oxygen. But because my HC or CCH is constant, I have no idea when the onset of a hit is, and other clusterheads say oxygen is only effective if taken at the beginning of a hit. As far as I can tell, the beginning of my current hit was on January 29, 2021, and if so, it's waaaaay too late for oxygen. (Today is April 21, 2021)
However, I've also had almost no side effects from the indo. As @MoxieGirlsays, I always take it with a lot of food, especially high-fat food (studies say this helps amp up the response to indo) and from the beginning I took a whole bunch of herbal gastroprotectorants: ginger, marshmallow root, great plaintain, arteminsin with it. I just added 20 mg Prilosec with each dose at the advice of my neurologists' PA (physician assistant).
For anyone with HC who can't tolerate the indo, try Gliacin. I know a LOT of people on a HC Facebook support forum who use that successfully instead of indo because they too had terrible side effects from the indo. Gliacin is a formulation of the herb boswellia and was developed by a doctor with HC. It takes longer to respond to it (up to a month) but it comes without most of the side effects of indo. Check out the research on his website: https://www.gliacin.com/. @kat_92@Zoejarvis
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On 9/22/2020 at 12:29 AM, xxx said:
Hey Siegfried,
CPH responds to vitamin D3 at higher 25(OH)D3 serum concentrations when accompanied with other anti-inflammatory agents. Please shoot me a PM with your contact data so I can send you a copy of the latest version of the anti-inflammatory regimen treatment protocol.
Take care,
V/R, Batch
Could we all see the latest version of the protocol? So far, alas, it hasn't done anything for me, but I'm on the original one. (Have been since January or so)
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@StephanThank you for posting about this! I just ordered some.
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@razorPP Thank you for posting about this! I just ordered some B1. I hope it has started becoming effective for you again!
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@alikhanI have this too. (I'm female) It's a known type of headache that's responsive to indomethacin.
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On 2/10/2021 at 7:29 PM, Jteira said:
This article is great! Notwithstanding the naysayers in the comment section (my criteria for a treatment is: "Does it work?" If it does, well then.), I'm encouraged, because not only is Vit M busting helping with my HC / clusters (the jury is still a little out on whether I have both), I can rest easier knowing that it's good for something else that runs in my family long term: vascular dementia.
I appreciate the posting of this link!
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This so well written! Wow.
I especially love this part:
QuoteClusterbusters’ out-of-the-box efforts on behalf of its pain-wracked members are “the stuff of movies,” said Rutgers University sociologist Joanna Kempner, who is writing a book on the group. She compares the clusterheads to the 1980s HIV activists who also boldly experimented with unapproved drugs.
“Medicine has ignored these patients for so long that they live in a wild west of treatments,” Kempner said. “They saw the gap in research and did their own research on their own bodies.”
In the process, Clusterbusters has won the hearts — and help — of key allies in academia and the pharmaceutical industry.
But the whole thing is really awesome!
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5 hours ago, Jteira said:
Hi guys, I wanted to share this article I wrote on microdosing with the community.
This article is excellent!
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@MaxHead I love Asheville! Thank you for letting me know - that's only about a 4 1/2 hour drive from me.
I was actually hoping, as part of knowing who is near me, to petition South Carolina's legislators to make psilocybin and LSD legal for medical use, as Oregon has done with psilocybin. Anyone who lives in South Carolina could join me to make our cause more effective. That is, if I can get rid of my current cycle!
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@Tony Only I'm very glad you found it helpful! I also greatly hope this will be helpful for many. I so want to help anyone (including me!) with HC, clusters, and anything like them. They are so hellish and disabling.
One note / update: on another forum it was mentioned that Gliacin is taking an extra long time to arrive due to COVID. These folks (they have HC) said to expect this and if it works for you, to make sure to order your next bottle(s) far ahead of time. They didn't give a time frame but I have the impression from the way they wrote it that it was a matter of extra weeks, not just days.
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1 hour ago, HeadAgony said:
@jon019 well that is both good and bad news I suppose. Beer is basically what I was referring to as being a trigger. My hope was that if a cycle was busted that I could return to having a beer without having an attack. I’m not an alcoholic or anything but for instance a couple of days ago I found myself hanging out with friends in a historic town where they had local distilleries, wineries, etc. We visited several different shops and my friends were all partaking in what seemed to be different yummy flavored spirits. Fortunately I was between attacks and my shadow was barely there, so I felt decent, but knew better than to even have a sip. Hell I kind of worried that smelling alone might trigger an episode.
With all of that said I am looking forward to busting my cycle still and hope that if I am successful that I can return to a normal life.
Hopefully others will weigh in on their successes and if they ruined their busy by triggering an episode after busting.
I'm curious to know too!
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46 minutes ago, Jteira said:
- 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!
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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.
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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?
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Hi @Tony Only,
Also, I just came across this today:
Oral glutamine attenuates indomethacin-induced small intestinal damage
https://pubmed.ncbi.nlm.nih.gov/15128285/This study was done on rats, not humans, but it still might be worth a try. Here's an L-glutamine supplement from a brand I like (generally less fillers than others) on Amazon: https://smile.amazon.com/Pure-Encapsulations-l-Glutamine-Hypoallergenic-Gastrointestinal/dp/B000VYZG0O
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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!
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Hi @Siegfried,
I'm sorry for cross-posting this, but from my response to another person with HC taking indo on another thread, in case it helps you too...
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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:
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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 respectivelyThe 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
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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/
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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/
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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!
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Vitamin d
in General Board
Posted
Hi @DeboraVaughan I had been taking the D3 regimen since January with no effect... BUT I had been following the original regimen. Batch @xxx (who is WONDERFUL) is now working with me and I'm on the new regimen, and have high hopes for it. I have my first D3 lab scheduled for Monday.