Tony Only
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Posts posted by Tony Only
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I can totally relate to this. I have PTSD and pretty severe trauma background and for me, every "trip" for cluster treatment I won't be expecting anything good - so the set & setting is way off. I can't do mushrooms on the normal doses pretty much at all. For me who prefers not "to go there" but still needs to treat clusters, LSA is a good option. Or a bad option, since it's no "fun" - mostly nausea but there are almost no psychedelic effects. There's always kind of a pressure present in my life because of the need to prevent with something I am super uncomfortable with but if I don't, facing cycle is way worse. That's a tough spot you are on. BOL would be a life saver for guys like us.
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Thanks for the encouragement, so I finally did. It gives a lot of hope that there are doctors like McGeeney available for our community.
I was thinking how great would it be for some ideas to get exchanged between US and finnish doctors. To me it has always seemed that doctors in here, especially in neurology, don't have any kind of source for information what is happening and has been happening in patient communities. For a long time. Cooperation would probably have a huge impact.
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8 hours ago, jon019 said:
Both verapamil and Imitrex have been reported to negatively affect cycles for some folks...either lengthening and/or causing rebounds. Personally hadn't heard that for steroids...but could be... and it can produce some really nasty side effects, so is generally used in a taper and/or IV to break a cycle while a prevent med kicks in (10-14 dys). Since it's not working for you anyway... ...I'd drop that one like a sh**ty diaper....3 months is too long for CH.
I have been administering the finnish group now for 6 years, I would say steroids are the most potent to affect negatively on cluster headache cycle length and via that to status; most episodics that go chronics do way more steroids than anyone should (if you consult GPs) - if you are in that group that medication will transform your condition in the long run. On steroids it would mean annual use or several courses inside the same calendar year. Many self-medicate using it non stop. When the regular steroid response is gone, adrenal cortex might not be working anymore (which should be kept eye on anyway if on steroids) and the last option is IV steroids. In a large group it's fairly easy to do comparisons or questionnaires on cycle lengths among people who have never touched a cycle with steroids and those that do regularly and only one of those groups has extending cycles.
Same deal with triptans (Imitrex) - they are not this dangerous to everybody but for some. But they usually bring additional attacks and intensify the ones happening. But since triptan molecule is around your receptor for days, it is doable to keep the cycle neverending with them as well. Verapamil probably affects least to the condition itself in a bad way. Yeah, I remember when it was thought to be one of the worst. Still many people account it for making them chronic.
Patients descriptions about this phenomenon should be recorded somewhere. To me at least, it happening for some is equally destructive on quality of life than cluster headache itself. It doubles the misery.
'There's probably zero scientific data on this.
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10 hours ago, brs82 said:
I have tried MM several times and seeds twice , that option is still on the table but would be my last resort.
This left me puzzled, what happened that made you go back to pharmaceuticals ? Tryptamines (MM) will abort this kind of situation but there's a detox from everything that is blocking, anything that might be even interfering and even then it can be hard with pharma background. Those who have had the certain drugs on a long term use may need additional tryptamine or cycling of tryptamines LSA-psilocybin-LSD but if this is done right, on a prescription medication body I can not imagine going back from that. I am just wondering why. If you do these with blockers in your system, you will still get the psychedelic effects but no response to cluster headaches. If you are able to detox to medication free, you can do subhallucinogenic doses if the effects are unpleasant.
Again, in our finnish group there has never been such amount of busting not done right than in the last few years. Probably because many will not discuss what they are about to do (laws) to have others help if treatment response is not what it should be - which is absolutely terminating clusters. Tryptamines are not just an addition one can throw in, you absolutely must know what you are doing and how to have those receptors free for healing molecules. I am sorry I don't have the skill to write in encouraging way, I see a bad situation and jump right in being very solution orientated.
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To me, this sounds like a cluster that has been boosted into a whole new level with the help of prescription medication - steroids and triptans (Imitrex) being absolutely two of the worst. They are like fuel for the fire in the long run. For some it happens in few years and for some it takes a decade or more - regular use of either one, both together being the faster route. I have almost exactly similar personal experience and nowadays these kind of patients arrive to our finnish group almost weekly. For some of us, steroid&triptan combination is able to make oxygen work less efficiently at first and if the use is continued lead to oxygen not working at all. Triptans not touching a hit at all is very rare but it is doable with steroids but at this point you usually are receiving them intravenously or you have done too many high dose courses for one lifetime. At my IV time nothing touched my hits anymore. Depakote and verapamil obviously are not helping here, first being able to screw up your brain more and verapamil obviously useless since it's a preventative.
Because this does not happen to all of us, not even all who regularly overmedicate with the two, it's not always though of and even questioned at. It's certainly a possibility to be considered when there's a pattern. What I personally don't get is how doctors systematically miss this; in my country the most usual way to neglect this is to say some cluster headaches transform this way - which is not the case. It should jump right out of those patient files reading 5 years back for an example.
I hope this is not the case and it's just a really evil cycle. But if you see a pattern going steadily worse cycle after cycle this is probably it. Not many things one can do but to detox to a point that oxygen begins to work again. After detox anything you will do (Anti-inflammatory regimen) will be more effective than they would be when on prescriptions (when they are the cause for things going worse). I can't but wish you all the best and I hope you feel you are somehow able to detox and find better routes, busting, Vitamin D, Herbal protocol.
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I thought I would create a post here mentioning the finnish terms for cluster headache and some information so other patients in our country are able to find us if they use google for an example.
The exact translation of Cluster headache in finnish is Sarjoittainen päänsärky. Never liked the headache part in it. So many of use Hortonin neuralgia (Horton's neuralgia or neuralgy in english - this term is used a lot in literature over here) or Hortonin oireyhtymä (Horton's syndrome) which to me is the most "correct".
We have a need for association but so far there is only a patient community that can be reached in Facebook - it's called Sarjoittainen päänsärky. There is a fairly large member base at the moment around 1400 finnish clusterheads. And we have a little clusterbusting secret society somewhere, so I have heard.
I have a little site in finnish but it's just information gathered in one place and would need good structure and a "real" website as well. I hope one day I can finish finnishing the Clusterbusters Method there completely, then it can be freely used here at the Clusterbusters website for an example. As a resource for new finnish patient just diagnosed there is an excellent blog that offers knowledge and things to think about that are essential for survival as a CH patient in Finland.
I thank everyone at Clusterbusters for being alive today and for any finnish clusterheads wandering to this post - join the community ! PF wishes
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Today we had a young girl arrive our finnish Facebook group, she has had some form of head pain most of her life but has associated it to hereditary condition she also has. Now she is beginning to think the head pain might be something else. I believe it will be very, very difficult to a) find a doctor that is able to spend the time required with her and sort out different things going on pain-wise and b) if such doctor is found to have possibility to go through the required tests. I'm thinking asking around in patient communities, in here for an example because cluster communities are so knowledgeful. We already found someone who has CH and EDS which is amazing. I did a Google translate on her message and will attach it below. The english is pretty bad but I hope you can understand the important parts. Any ideas are most welcome and if someone has thoughts where to ask diagnostic ideas online that would be great. I was thinking of asking about it from Brian McGeeney via Facebook but can't decide is it too intrusive.
---translated message begins---
Basics: My father has the joint hypermobility form of Ehlers-danlons syndrome, which is connective tissue disease. The disease is strongly hereditary and I have all the symptoms that meet the criteria of the disease. However, I have not been diagnosed because the illness is poorly known in Finland. That is why I also have no contact for doctor or treatment. However, my worst symptom is a chronic headache, which I have always thought to be linked to Ehlers-danlons, because it is a common symptom. (so I have a lot of other symptoms, but now I just focus on that headache) But I was thinking of trying a different approach if this is something else.
My headache began irregular as a child and has increased with age. I am now 18 years old, my worst symptoms began when I was 9 but I have had symptoms before that as well. Now for 2 years I have had a 24/7 headache and no day has been without pain. The pain is, however, undulating (stronger / milder) and varies daily, but on a scale of 1 to 10, the pain is an average of 6. The sore focuses most on the forehead. But it also often feels strongly at the top of the backbone, which I also occasionally get electric-like pain or pain attacks. These electric-haired pains will also come to the forefront, ie they do not focus on one spot. And it seems like a feeling of pain is ready to make me unconscious / knock me out. I have no auras or light / smell / sound sensitivity. Clearly I attach a strong dizziness to my headache (dizziness is more rocking kind) and nausea, as well as fainting. In addition, it seems that the senses would get mixed / weakened, and my balance will deteriorate considerably. Also in heavy pain, there is a blurring of speech and the general difficulty of communicating. On my daily head pain there is also a severe ache on the face (cheekbone and jawbone). There is also a discomfort and pain behind the eyes and that pain feels like "sharp". My eyes may also drain or be very dry. Me feeling sensation is poorer on the right side of my face just as my body is weaker to sense on the right side. My limbs often get numb or feel numb and it is difficult to say whether it is a headache or whether it is caused by EDS. My vision is also weakened by the roughness (I have astigmatism, poor vision), which feels like a gauze in front of the eyes. Pain is usually worse when I am lying down and especially if I am sitting.
There has been much research, but no explanatory reason for this has been found. All the possible blood tests, the liquid sample, the head and neck muscles MRI have been taken (it should be added that sometimes I asked about the possibility of chiara and then it was said that it was not.) But I just found out yesterday that the borderline diagnosis in Finland is 5mm, .), epilepsy is ruled out neurological examinations have not anything unusual and I have visited ear clinic examinations are not ache due for balance or structural defect. I have tried migraine blockers, meds for migraine attacks, antidepressants, painkillers to resist pain better, regular painkillers, painshots, intravenous analgesics and caffeine pills. None of these have been helpful and most of them actually only exacerbated the pain. At home I have tried everything possible, of course, what I have just been brought to my attention, which would facilitate the pain.
I've tried to weed out all the stress and stimuli of life away. A year ago, I had to put an end to a day of high school and at the moment I'm in high school online, which does not in any way due to the pain go particularly well. I do not have any more hobbies, but in EDS it is a part of me. I would not be able to live alone at home, and I would not even dare to live alone because I need help from my boyfriend weekly. Often the appearance or meeting of friends requires a lot and the pain is usually worse after the stress the next day. This is no longer humane and I'm going to have the means to go down. Therefore, all information and assistance is now required. Would you recommend a physician specializing in headache? I would also like to especially hear the experience if some have tried botulinitoxin to treat headaches ...
Thank you so much for having read my long text and wish you all good November!
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Me too, at any browser. Every time you should navigate you get the warning page.
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On 11/5/2018 at 7:17 PM, jon019 said:
BTW: I'm at over 20 different meds in this ch career (plus chemo).... and whatever long term price I have and will pay...nobody is gonna be able to tell "yup, that was the one that did it"...……………….personally, I believe verapamil to be WAY down on the lifetime impacts list...………………….YMMV
I have to comment on this part having gone through well over 20 meds myself. Lots of the "old timers" who have been around for decades and have gone through a bit more rough treatments for CH are ready for anything and are ready to pay any price named. But I don't think that's fair for the young folks. For verapamil the impact may be small - for many anything is small that includes surviving and staying alive - but what if even the little one is avoidable. We have a finnish patient group sized 1300 people at the moment and many people who are not even at their twenties yet arrive and join our group and have had to give up a sports hobby for an example due to verapamil. They learn of anti-inflammatory regimen and if they're lucky will avoid further heart issues, discontinue verapamil and seek safer options. That's also the reason why I am still writing in the internet; I hope that one day all patients would have all the options laid out for them and they could pick the most effective and least potential to cause any size of negative impact later on in life out of all these options. First. It's a long way until we're there though.
In large sized groups that have gone on long enough, certain side effects are associated to the same drugs over, over, over and over again. What makes it difficult is that they won't happen to everyone but there are certainly things that should be avoided (if there is another option to something).-
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On 10/21/2018 at 11:34 PM, CHfather said:
You have to ramp up Verapamil, with monitoring of your heart. Many people with CH need large doses before it's effective -- considerably larger that what is used in its typical application, as a blood pressure med. Something in the range of 960mg/day can be required for full effectiveness. (The need for such high levels is recognized in the medical literature about CH -- it's not something people do on their own -- but many doctors are not aware of this.)
The D3 regimen, if followed properly, will probably be more effective for you, and better for you, than Verapamil.
Every time your dose is altered by 80mg to one way or the other you must get a heart film. I would not recommend verapamil to anyone in a world where we have anti-inflammatory regimen (vitamin D), herbal protocol (liquorice root) and busting (MM, lsd, lsa). It's not used for it's regular uses (heart/blood pressure) not that much anymore because there are better/safer options . IMO 480mg per day is just about maximum for any kind of safe use for majority and even on those doses there usually eventually arises either a heart problem or problem with the response. I've been well over a thousand myself. Verapamil will have an impact for the rest of your life, no matter the dose. I agree with CHfather, do the D3 regimen instead. Good luck !
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For some reason this reminded me of Trauma Releasing Exercises (TRE). There is probably a connection with myofascial trigger points and fight and flight reflex. I think it would be nice if someone would look more through research into this kind of approach as well. It could be included in discussion about how hypothalamus dysfunction is born.
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I copied/pasted the text in the Facebook post, inserted that and the link to Facebook post here in the "Submit Reply" box. This forum automatically changed the link to somekind of Facebook preview and when I tried to reply I got this.
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It was announced on Clusterbusters facebook page that BOL-148 is back on track. I would have posted the update here or even the link but this forum does not let me do it. So go to Facebook, search "Clusterbusters" and scroll down to Denver posts, it's there.
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There's a wide variety of exercise people use to even "turn back" an approaching hits or treat that shadowy feeling. Does not work for everybody, for some it makes things worse. Would it be possible for you to look into O2 again ? How you use it makes a big difference how well it works. You could get a tank to your work maybe ? O2 is at least as efficient as triptans BUT does not contain the risks that triptans do creating additional more severe attacks and lengthening the pain cycle. I personally would never take a triptan for an attack, only O2. If you go to work after a hit and are still in pain, that might be the "shadow pain" in between the attacks. Taurine (energy drinks) might be good option for that as well as Liquorice Root tincture (there's Herbal Protocol here in the board somewhere, this can't be used with triptans or several other prescriptives but can be used with busting).
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I wish you a celebration of the day of your birth !
Users of this board can probably relate to this little quote.
"The struggle ends when gratitude begins." -Neale Donald Walsch
Feeling very grateful for the help I and so many have received. Have a good one !
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For anyone looking into the subject of trying to have an impact to cluster headaches via personal diet, I can give my highest recommendations for the book Brain Chemistry Diet by Michael Lesser.
As a personal opinion as many diets might help us as a patient group, after all we are individuals and each cluster headache is a little bit different. A custom made diet for cluster headaches would be rather interesting, one of targets probably being an effort to be able to affect our ("faulty"?) brain chemistry. Someone in the orthomolecular field came first to my mind. Many have found personal diets already that help them with cluster headaches.
Here's the book on Amazon (I think some have a way to get a preview of the book there?)
https://www.amazon.com/Brain-Chemistry-Diet-Michael-Lesser/dp/0399147446
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I think it was late 2006 when I heard for the first time about an american patient group that were pursuing after effective treatments for cluster headache. I really dug their name. They were called Clusterbusters. Here in Finland there was a lot of badmouthing about them, bunch of patients who only want to "get high" even from such people who really should have known better or should have had more wisdom to look at the whole condition and treatments objectively. I didn't care much about that. It is amazing to where Clusterbusters has come since then and what Bob Wold and everyone at Clusterbusters has achieved for us, do we know or understand it today in 2017 or not. Thank you Sir and everyone involved.
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Hell, I'm not even sure what my display name has been in 2010 when joined. I browsed through My Account but could only find "current e-mail address", could not find what it was back in 2010 or what the ID was.
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So, are the administrators able to directly fix any issues after the update ? I don't have a clue with what e-mail I have signed up with (if I can't check it now from anywhere on my account?), it's possible it's an e-mail account I don't have access anymore to. Should it be the case are you able to fix things for those who contact via e-mail for an example after the update ?
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Don't forget to have another blood test, then you can also calculate how the amounts you have been using have affected on your levels, on your personal case.
If you can get oxygen that will eliminate most of the panic in life because though you still get hit, you can abort every hit quickly. Easier to weight your options with calmer mind.
In Lithuania this company should deliver sufficient O2 equipment, at least they do in Finland
Any questions about oxygen, just ask.
Wishing you all the best
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Many of us have issues with our eyes and eye-sight, it can be and probably is cluster related but not related to blocking. If something is blocking the MM now and did not couple of years back, what's different ? Any prescriptions, vitamins, something in the diet ? Since Vitamin D is not obviously working at the moment, I would not hesitate to pause it and if you don't know your blood level, I would pause it today.
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Have you been using a lot of MM recreationally as well, not just to treat CH ? The most usual types of difficult clusters (that I know of) are the ones that start straight out chronic and do not respond well to any treatment (not your case) and ones that have transformed from episodic to chronic with too much (prescription) medication overuse (not your case). If one views alternative treatments as others, they can be overused as well (in my opinion) and lead to less response - not just psychedelics but others as well.
My suggestion would be to tell your doctor the truth if that does not lead to any severe trouble with you, but caution is wise since I can relate to where lack of understanding can lead. And have that MRI.
I am not a supporter of verpamil as treatment for clusters but it helps some so it can't be ruled out. Oxygen on the other hand I would recommend for everyone and if it does not help it's usually done wrong. Inadequate flows being the most usual thing and/or wrong kind of masks. High-flow oxygen with proper masks should be one of first priorities. Vitamin D is not safe either when used as big amounts for long periods of time. Have you had your blood levels tested concerning Vitamin D ? If not, please do that ASAP. Liquid Vitamin D's plus "sprays" are usually in very high concentrations. What's your product in IU's ? I know few who had a rough time with clusters when their blood levels were approaching toxic levels.
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Chance to get oxygen ? If not, chance to try it to treat an attack at this resistant cycle ?
EDIT: I re-read your posts. What has been the response from Vitamin D ? I would not rule out LSA (seeds) if you have only tried them once. Potency varies from batch to batch like we've seen so many times in communities. I think I saw a pretty good LSA extraction file in Facebook somewhere.
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I think the amounts of MM mentioned in the beginning of this thread are quite large (3-4 grams). And you mentioned sometimes not having any effects. Is your MM coming from the same source all the time ? I would guess the busting material is faulty. Or if it is not, used by someone else for an example, my second guess would be something blocking. It does not have to be a prescriptive medication, it can be something else.
Your CH certainly sounds very resistant so an MRI should be taken (sorry if this was already suggested) and maybe consult a neurologist if that is possible. He/she most likely will not agree with instructions given here.
For some changing tryptamines does the trick when one stops working (momentarily) that has been effective in the past. I think LSA (RC seeds, HBWR seeds) is at least as good as psilocybin in MM. I would try that. Then there's LSD like you mentioned but if it's scary put a weight on that feeling as well. Then there is 5-MeO-DALT which did the trick for many of us but it's hard to find outside US.
Have you thought about other options than busting, besides pharmaceuticals ? Adjusting you diet ? Anti-inflammatory regimen (Vitamin D + others) ? Herbal Protocol (Liquorice Root + Skull Cap) ?
How has your CH reacted to taurine (energy drinks) or have you tried any ?
Asking for any ideas, again
in General Board
Posted · Edited by Tony Only
I am looking for any input or ideas for female patient who does not write in english so I am posting on her behalf. I don't know much about the brain injury involvements in particular.
Cluster headaches have begun and gone pretty severe in just few years. Here are some background details. Anything anyone can think of, to help or to try, it might help. Anything I can ask from her.
Brain injury in 2013 which left some symptoms; headaches, fatigue, memory problems and trouble with balance.
Cluster headache diagnosed in july 2017.
Medication prescribed for it: steroid course, verpamil, imitrex when needed and medical oxygen.
Only triptans and oxygen have worked.
Diagnosed further as chronic in 2018.
These have been tried:
Gabapentin - not effective
Topamax - too severe side effects
Baclofen - too severe side effects
Lioresen - not effective
Diazepam - only makes sleepy, not effective
Tramal (opioid) - increases amount of attacks
Tried during hospital stays:
Valproates
Indomethacin
Dexketoprofen
...these have only helped a little
They might help with oxygen but do not prevent attacks from happening. Verapamil dosage has been 360mgx3 times a day (total 1080mg/day) and now it is lowered to 120mgx3 (total 360mg/day). In addition to others there is melatonin daily at 9mg dosage. Oxygen and triptan when needed.
Occipital nerve block done last week, maybe it has only helped by decreasing a few attacks.
Her blood level for Vitamin D is 175 nmol/L. She is waiting for SPG stimulator but due to delivery problems it will take a while. Needless to say probably, she is exhausted.