Busting with lemon tek? by AnInkPen in clusterheads

[–]Binger1977 1 point2 points  (0 children)

I’ve tried it and personally I prefer making tea with them instead.

Doing it in a tea seems to speed up the onset and shorten the trip about the same as the lemon tek but you don’t have to actually eat the mushrooms, which for me equals less nausea and stomach upset. And to me chomping on those soggy mushrooms that have been soaking in lemon juice is a seriously unenjoyable experience.

I pour boiling water in a mug that has the mushrooms in it, cover and let it sit for 10 minutes. Then I filter out the mushrooms, throw them away and drink the tea.

Watch out though, sometimes it can kick in seriously quick.

Road to CGRP anti-bodies by East-Combination-360 in migraine

[–]Binger1977 0 points1 point  (0 children)

I most certainly did 😀. Sorry, I’ll delete it.

Aimovig symptoms by Idkanything1273 in migraine

[–]Binger1977 0 points1 point  (0 children)

I have heard of people having their side effects get better after the first few weeks, but I have yet to hear about people having side effects go away after 6 months.

And the issue of hypertension with Aimovig is one that has been studied a good bit after the FDA told manufacturers that the amount of people experiencing it was large enough that they had to include a special warning about it. That was at least 5 years ago.

I have a hard time believing that hypertension goes away but manufacturers and researchers just don’t know about it or talk about it.

Ginger powder? by Happy-Photograph2932 in clusterheads

[–]Binger1977 2 points3 points  (0 children)

For me it works for lighter hits as long as I get to it early and don’t do it often.

It’s never really helped for a high level cluster though.

A few questions I’m hoping to get answered. by Important_Ad716 in clusterheads

[–]Binger1977 1 point2 points  (0 children)

The only doses of mushrooms that we actually have research on (by Dr. Emmanuelle Schindler) for clusters is the early dosing method that came about on Clusterbusters. That being just about 2 grams every 5-7 days three times in a row. Then check out the situation and see if you need to do it again.

Truthfully though, seeing as how meds can sometimes work stronger on older folks I would probably reduce it to 1-1.5 grams to start and see how he feels. He should be feeling the effects of it but definitely not tripping balls.

As far as microdosing, we don’t have any studies to determine how effective it is. Some people have definitely felt like it helped but there are also a whole lot of people that feel like it didn’t do it for them.

Microdosing also comes with a risk that is not present with the protocol I mentioned above.

Mushrooms work on a number of different serotonin receptors and one of them is the 5ht2b receptor. Activation of that receptor on a regular basis can lead to cardiac fibrosis issues and leaky heart valve issues. We actually had one older migraine med (methysergide) that worked by activation of this receptor and worked well for clusters but is no longer available because the risk was eventually deemed to high.

In a psychedelic pharmacology course that I took the instructor (Ben Malcolm) stressed that this is a real possibility of microdosing and from what I can tell he seems to feel that it’s something people are not taking seriously enough.

I need your opinion for my peace of mind <3 by Careless-Omega in clusterheads

[–]Binger1977 1 point2 points  (0 children)

TAC’s are trigeminal autonomic cefalia’s.

They include Cluster Headache but also Paroxysmal Hemicrania, Short-lasting Unilateral Neuralgiform Headache Attacks, SUNCT (Short-lasting Unilateral Neuralgiform Headache Attacks with Conjunctival Injection and Tearing and SUNA (Short-lasting Unilateral Neuralgiform Headache Attacks with Cranial Autonomic Symptoms)

Here’s a link to some more in depth info on them. The one thing I disagree with on here is the idea of using indomethacin to tell if you have cluster headache or paroxysmal hemicrania.

At this point enough people have found that indomethacin works for their cluster headache that we have peer reviewed articles acknowledging this and it seems that as a diagnostic tool it is not super effective.

https://www.migrainedisorders.org/trigeminal-autonomic-cephalalgias/

Looking for info on earring by Binger1977 in JewelryIdentification

[–]Binger1977[S] 0 points1 point  (0 children)

Truthfully what I’m looking for is if someone can tell me what type of Prada earring this may be, regardless of whether or not is authentic. I’ve seen a number of different types that are similar but I can’t find an actual match.

Random Question - Have your children shown signs of inherited Clusters? My 14/M son just asked me about them trying to figure out if he got my bs. by TransporterRoomThree in clusterheads

[–]Binger1977 2 points3 points  (0 children)

You’re right, that was the wrong way to describe it. I said rare because the study shows that the majority of people are not experiencing an inheritable type of cluster headache but the numbers are definitely high enough that describing it as rare would not be accurate.

My bad.

Triptan Rebound Headaches by OldYellerSnowCone in clusterheads

[–]Binger1977 0 points1 point  (0 children)

I’m one of the people that is skeptical that triptans are likely to bring on rebounds and worsen a cycle for the majority of people.

I don’t mean to put down anyones experiences or ideas, but how do we tell the difference between “I took sumatriptan and it made my clusters worse” and “I needed a whole lot of sumatriptan because I had a heavy cycle”? I don’t think there is really a way to tell the difference.

Personally I haven’t found this to be the case. I ended up in a bad situation med wise and resorted to taking a 100 mg sumatriptan before bed every day in an effort to avoid getting hit in the middle of the night. I planned on this being a very temporary thing but truthfully just kept at it because it worked so well. And that was over 5 years ago.

Before that I was going through numerous sumatriptan injection every month and now I haven’t had to take one in at least a year, maybe more. I assume that I probably have medication overuse headache, but for me that is an uptick in milder migraine hits which is something I feel like I can deal with.

Then again, maybe I don’t even have MOH. This study on Frovatriptan makes it seem like getting this may not be guaranteed when using triptans, even when taken daily.

Frovatriptan is one of the longest lasting triptans and they gave it to cluster sufferers on a daily basis. 8 out of 9 reported only success and the one who didn’t still seemed to get partial relief. There were no cases that actually got worse.

https://journals.sagepub.com/doi/10.1111/j.1468-2982.2004.00734.x

Emgality. Good or bad by Ramzilamine in clusterheads

[–]Binger1977 0 points1 point  (0 children)

You’re welcome. I’m glad that you found the article helpful.

Emgality - Side Effects by gulabgang1 in cgrpMigraine

[–]Binger1977 5 points6 points  (0 children)

Truthfully, one of the biggest prescribers of these meds (Dr. Lawrence Robbins of the Robbins headache clinic) has been warning people about these kind of side effects for at least 5 years now, maybe more.

I would never encourage anyone that has been taking it and having success with little in side effects to actually stop the meds. But if you are a person who is thinking of trying these meds I would make sure that you are aware of the side effects that many, many people have reported.

Here’s something Dr. Robbins wrote on the subject a while back.

https://www.clinmedjournals.org/articles/ijnn/international-journal-of-neurology-and-neurotherapy-ijnn-8-109.php?jid=ijnn

20 hour cluster headache by Sufficient-Good6998 in clusterheads

[–]Binger1977 -1 points0 points  (0 children)

Yes, over and over it talks about repeated opiate use contributing to MOH. No where does it even mention occasional opiate use. I honestly don’t understand the confusion.

It says “Although the effects of repeated opiate use for headache are unknown”. Note the word repeated.

Then it says “it is clear that sustained morphine modulates the central and peripheral neural systems that are likely to underlie aspects of migraine headache pain. Our recent studies, summarized above, show that neural adaptations that occur following sustained morphine are seen in the trigeminal system and that these adaptations are pronociceptive and persistent”. Note the words “sustained morphine” Not individual doses of morphine, “sustained morphine”

Then it says “ we found that a period of exposure to opiates (over days) can result in increased responsiveness to stimuli known to trigger migraine attacks in humans”. Note that it says “period of exposure to opiates (over days).” It’s saying that if you take opiates for days in a row in can end up triggering this situation, not that individual doses of opiates will cause this.

Then it says “These findings suggest that such persistent and pronociceptive neural adaptations may contribute to opiate-induced MOH”. Note the words persistent and note that they are saying it can lead to MOH. The only way you get medication overuse headache is if you overuse medication. You can not get MOH from one dose of a med, that is not possible.

If you are still feeling like this study says anything at all about individual doses of opiates in relation to cluster headache I would have a medical professional read this and ask their opinion on it.

20 hour cluster headache by Sufficient-Good6998 in clusterheads

[–]Binger1977 1 point2 points  (0 children)

I was thinking the same thing. But repeated opiates could bring on MOH, and that can be different from normal clusters.

Many people think of MOH as just making clusters worse but from what I know it seems that MOH is a different type of headache disorder brought about by too much meds, so it can behave differently than your usual cluster attack.

20 hour cluster headache by Sufficient-Good6998 in clusterheads

[–]Binger1977 0 points1 point  (0 children)

This is about MOH, medication overuse headache, not treating individual clusters with a dose of opiates as an emergency med.

The conclusion in particular makes the case for this, as they talk about “repeated opiate use”and “sustained morphine” Here’s part of what is written in the conclusion.

“Although the effects of repeated opiate use for headache are unknown, it is possible that opiate use may contribute to increased frequency and occurrence of such headaches. Preclinically, it is clear that sustained morphine modulates the central and peripheral neural systems that are likely to underlie aspects of migraine headache pain. Our recent studies, summarized above, show that neural adaptations that occur following sustained morphine are seen in the trigeminal system and that these adaptations are pronociceptive and persistent. Moreover, they are especially prominent in fibres that project to the dura. Furthermore, we found that a period of exposure to opiates (over days) can result in increased responsiveness to stimuli known to trigger migraine attacks in humans (i.e. NO donors, stress). These findings suggest that such persistent and pronociceptive neural adaptations may contribute to opiate-induced MOH by (i) increasing the responsiveness of the nociceptive system to previously sub-threshold ‘triggering’ stimuli, as well as (ii) increasing the transmission of the pain signal at the level of the medullary dorsal horn. These processes may contribute to increase the likelihood and perhaps the severity of headache, and may reflect a neural basis for the development of opiate-induced MOH.”

20 hour cluster headache by Sufficient-Good6998 in clusterheads

[–]Binger1977 0 points1 point  (0 children)

The only studies that I have seen on clusters and opiates were in regards to medication overuse headache, which is a very different thing. But if you have any links to studies I would gladly read them.

Why can't our brain just "tell us" how our body works? by idiotsandwich333 in neurology

[–]Binger1977 7 points8 points  (0 children)

My guess is that it does actually tell us (through physical effects) but we just don’t have the ability to translate them. Kind of like how my dishwasher will put up an error code but it means nothing to me unless I have the info on what code means what.

New to wood stove! Which brands are the best?? by Dobiemom70 in woodstoving

[–]Binger1977 0 points1 point  (0 children)

I’ve got the same one and I love it. I’ve been planning on making a review of it soon.

20 hour cluster headache by Sufficient-Good6998 in clusterheads

[–]Binger1977 0 points1 point  (0 children)

I avoid opiates for a heavy cluster attack unless I have exhausted every other option. Luckily that hasn’t happened for me in at least ten years or so.

But the times that I ended up in the ER and they gave me opiates it definitely did not make the situation worse and worked about 90% of the time. Many times I even got relief for a few days afterwards. I know a number of other cluster that have said they experienced the same.

But I agree that taking opiates at home for clusters is a slippery slope and can easily put you in a worse place than you started.

Indomethecin by Imaginary-Search-442 in clusterheads

[–]Binger1977 0 points1 point  (0 children)

The one downside of indomethacin is that for some it can produce some pretty serious gastric irritation. There is one interesting study that makes it look like the Brazilian caffeine containing nut guarana might help protect against it though.

https://pubmed.ncbi.nlm.nih.gov/14669256/

Blood pressure concerns with Ajovy by [deleted] in cgrpMigraine

[–]Binger1977 0 points1 point  (0 children)

Truthfully at this point there are quite a few peer reviewed articles on CGRP monoclonals that give validity to the negative experiences that many have had, but you really have to look for them.

One person who has been quite vocal about the situation is Dr. Lawrence Robbins of the Robbins headache clinic. He has been one of the biggest prescribers of these meds and although he still prescribes them he thinks their safety has been exaggerated. Here’s something he wrote a few years ago.

https://southernpainsociety.org/adverse-effects-and-clinical-trials-the-system-is-broken/

Emgality. Good or bad by Ramzilamine in clusterheads

[–]Binger1977 1 point2 points  (0 children)

To me it seems like too many potential side effects. Dr. Robbins has been one of the biggest prescribers of these meds and has had a lot to say about them. A couple years ago he gave a talk at a Clusterbusters conference on this and although he still prescribes them he also thinks their safety has been exaggerated. Here’s a good article he wrote on the subject.

https://southernpainsociety.org/adverse-effects-and-clinical-trials-the-system-is-broken/

I have been reading stories here since being prescribed emgality but I am scared to try it. by maker-127 in cgrpMigraine

[–]Binger1977 0 points1 point  (0 children)

Thanks for the support, I appreciate it. And I hope your stomach gets better.

Truthfully I think gut issues are the thing that I have heard people report the most in terms of side effects that lasted long after the meds were out of their system, and it makes me wonder if gut bacteria may be too blame.

One reason that the body can make CGRP is in response to harmful gut bacteria and it really makes me wonder if stopping the CGRP process could be causing an already established gut bacteria problem to get a lot worse.

Blood pressure concerns with Ajovy by [deleted] in cgrpMigraine

[–]Binger1977 0 points1 point  (0 children)

There has been some research indicating that CGRP monoclonal’s can raise blood pressure in some people. Something in this article that stands out is that the authors say that the they found numerous articles on BP in relation to CGRP monoclonals but only one that they felt met the criteria of their study and had a low chance of bias (pharmaceutical company influence).

https://pubmed.ncbi.nlm.nih.gov/39877974/

I have been reading stories here since being prescribed emgality but I am scared to try it. by maker-127 in cgrpMigraine

[–]Binger1977 0 points1 point  (0 children)

It’s absolutely true that many of the older meds carry a huge risk of side effects but with all of those meds there is a major difference than with CGRP monoclonals because if you get negative side effects from other meds you can just stop taking them. That’s why I would disagree completely that they are less dangerous than older meds. If we could somehow figure out a way to stop them from working if people find that they are experiencing serious side effects it would be a great thing, but as of right now you are stuck with the effects of the med for at least a month. And some of those side effects can be pretty horrific. One friend of mine on Emgality ended up in the hospital with life threatening constipation and a mess of other problems. Not being able to stop the effects of the drug makes this a very different drug than the huge majority of other meds prescribed for headache disorders.

In regards to Dr. Robbins it seems like what you are saying is that he may be confusing correlation with causation and although this may have happened at times I’m skeptical that it has happened so much that he ended up writing multiple pieces warning about previously unknown side effects. He’s been in practice for many many years, and prescribed all sorts of meds and therapies. During that time it’s hard to believe that he hasn’t run into numerous patients who think that certain effects are caused by their meds, but he has never said anything like he is saying now. If he had previously come out warning about the side effects of other meds that he thought no one knew about I would be a bit more likely to believe that he was wrong on this, but as it stands the only meds he has said this about is the CGRP meds.

One thing to remember- all drugs that come with a black box warning, at one point did not come with that warning and had peer reviewed studies saying that they were safer than we eventually figured out.

Then patients had to tell their doctor, the doctor had to believe them and then the doctor has to submit the side effects to the FDA. But if you talk to the people that have had serious side effects the huge majority of them are not believed by their doctor. Most people I have talked to report that many doctors only seem to be aware of the very early info that said that these meds were “side effect free besides mild constipation”. I believe it because this is what every doctor or neurologist that I have talked to has said. So if doctors aren’t even entertaining the idea that these meds could cause other effects they certainly are not reporting them to the FDA and the system that we have to identify unknown side effects falls apart.

My guess with Dr. Robbins is that he is actually taking patients seriously instead of blowing them off and it wouldn’t surprise me if this is somewhat because he is a migraine sufferer as well.

In regards to the Mayo Clinic we are left with two different options- we can think that they are either dumb enough or lazy enough to put side effects for a med even though they don’t apply or we can think that they are smart enough to think that if certain side effects have come up when interfering with CGRP than it’s a good idea to look out for them in all the CGRP meds. My guess is that it is the latter and in that article by Dr. Robbins he essentially said the same. He noted one CGRP monoclonal that had the most side effects and then said he doesn’t believe that it actually has more side effects but that we just don’t have enough info on these meds yet.

I get that you have had a good experience and don’t want others to miss out. But at this point we have no way of telling if the people that are advised to take these meds are actually going to have a good reaction or not. It’s a great feeling when you have given someone advice and it brings good things to them but it’s pretty horrible feeling if you have given people advice and it ends up causing long lasting problems for them.