Jump to content
ClusterBusters

All Activity

This stream auto-updates     

  1. Today
  2. HCH26

    Thank you clusterbusters!

    So thankful to have found this site!
  3. Brain on fire

    Short window and mild symptoms

    doctorssuck, When I see the word cure I get suspicious & a bit uncomfortable. There is no known cure forcluster headaches, if there were folks would certainly be taking advantage of it. The word cure followed by 'Now I only get one ch per week' is an example of There is no known cure for cluster headaches. Pardon if that seems repetitive, it is what it is.
  4. Brain on fire

    Cbd oil

    ?Spam?
  5. Pebblesthecorgi

    Cbd oil

    You can ask your doctor about CBD but the reality is there is so little data other than self reporting you will only get an answer based on their observations. Some physicians who practice under the Functional Medicine banner have more experience working with these substances but there is a paucity of traditional scientific literature to support or deter the use of CBD. Part of its popularity is because its relatively novel and widely available. The other reason is you can get it without engaging the medical system and traditional medicine has little to offer the chronic pain person particularly if there is a component of psychic pain
  6. formulaswiss

    Cbd oil

    While many studies have suggested CBD oil is helpful for pain, more research is needed, especially long-term studies with human subjects. However, CBD oil does show a lot of potential for pain relief. If anecdotal evidence is to be believed, it can be used to help manage chronic pain in many cases. CBD oil is especially promising due to its lack of intoxicating effects and a possible lower potential for side effects than many other pain medications. A person should discuss CBD oil with their doctor before starting to use it.
  7. Brain on fire

    Short window and mild symptoms

    jtmochel, Sage advice from CHfather & Fun Times. Never be afraid to ask, by asking we learn. It took me awhile to learn that & I'm still learning.
  8. Phil

    Micro Dosing

    DD, Pebblesthecorgi - thanks for the responses. Looks like the Microdosing is a lost cause - thanks for the advice. So I'll carry on with what works. Like DD says, I think grinding up to dust is probably the next logical step to gain consistency - I can fit it on to a tea-spoon and glug down with a glass of squash to stop the gagging. Who knows whether my brain is more/less susceptible - I have a strain called 'golden teacher' they are more visual than others which have been far too frenzied for me in the past. All I know is they work and stop the pain. I just need to make sure I'm in positive state of mind before doing it thanks guys, take it easy
  9. Yesterday
  10. I think I'm coming late to this thread but I have notable experiences. I have always felt that triptans (migrinal, imitrex, emerge and others) cause rebounds. I had a transient ischemic attack (TIA) in 2013. This resulted in my passing out while driving and mayhem ensued. My neurologist at the time led an extensive study and found that it was related to triptans. In 2015 I had an enlarged heart and arrhythmia develop. The Dr's felt it was related to a virus but they had no conclusive proof. I've always felt it was related to triptans which I still used at the time. For me triptans are not worth the trouble.
  11. First, I want to thank you for being such a great member of this community. I've learned much from you in my brief time here. Per subject line I would like to know the exact bloodwork "we" need. I will be seeing my neurologist at the beginning of May. He and his team are wonderful, mostly because they really do their best to work with me. I would need all of the regimen as a PDF if you can. I get treated for lymphomae [diffuse enlarged b-cell lymphoma- cured, follicular b-cell lymphoma-still in remission after 6 years( and currently ambeating Chronic Lymphocytic Leukemia- being treated with chemo. (Thank you World Trade Center) My doctors are all at Memorial Sloan Kettering Cancer Center. I am on a new chemo regimen–ibrutinib– So I need to involve my neurologist, oncologist, naturopath and the pharmacy department. I was taken off high-dose Green Tea Extract and Curcuminin when I was prescribed the ibrutinib. Because I am on 480mg Verapamil the metabolization of the ibrutinib is slowed down and my particular dose of ibrutinib was reduced by 1/3 in order to maintain the proper blood levels of ibrutinib.

    I hope this does not add much to your workload. I really appreciate it.

    IntoLight

    1. Batch

      Batch

      Jonathan,

      You should have my email response to your request by now.  I think I answered all your questions, but just in case, shoot me an email if I've missed something or you've another question.

      I'm well aware doing battle with cancer is a full time dedicated team effort between you and your doctors.  I'm shy one kidney and several square inches of scalp due to cancer... most likely caused by a year on a monoclonal antibody called daclizumab.  That said, I've managed through all this without chemo or radiation therapy... just lots of vitamin D3, the vitamin D3 Cofactors and lots of Vitamin C.

      I haven't found any open source data on adverse interactions between vitamin D3 and ibrutinib.  There are some links suggesting Omega-3 fish oil can be a problem but no technical or clinical data to back that up.  What I do know is the anti-inflammatory regimen with 10,000 IU/day vitamin D3 works wonders building a healthy immune system.

      I'm here to help... and learn.

      Take care and please keep me posted.

      V/R, Batch

  12. Pebblesthecorgi

    Micro Dosing

    Micro dosing is all the rage these days based on popular books like How to Change your Mind by Pollard. This is being used in the creative crowd and by folks for treatment resistant depression. The most talked about strategy is 1/10th a dose every 3-4 days. Everyone swears by it but data is lacking. Similar situation for cluster prevention. Folks are trying it but there is a paucity of data as DD has pointed out. I am amazed you are feeling the effects of a gram once a month you must either have potent stuff or a susceptible brain. Depending on your supplies you can make a tinture of MM for microdosing. For instance 20 grams dried in 200 cc Everclear, soak for a month or so then you have 0.1 gram per 1 cc.
  13. Dallas Denny

    Micro Dosing

    I'm episodic Phil.....been busting since 2010....was never successfull at preventing a cycle by maintenance dosing during remission and have never been successful at aborting a cycle already in progress.....but....although I have to dose through out my entire 20 week cycles, I get 2 to 4 completely PF days between doses and oxygen works much better than prior to busting! In 2017 I switched to a preemptive busting strategy in anticipation of a cycle beginning in late March early April at the earliest and as late as July/August......so, I began dosing with 1.5g every 30 days in late February and followed that strategy thru mid October.....never had the first twinge of a hit! In an effort to repeat that success, I've been on the same dosing regimen since mid February. I do powder and cap my doses to avoid the taste and resulting nausea. DD
  14. jh

    Thank you clusterbusters!

    Awesome site with many friends.
  15. Phil

    Micro Dosing

    Dallas Denny - what sort of dose are you on? I'm 0.9g dried on a monthly basis when in cycle - as I say, for approx. 6 months of a year. Some times it's much stronger than others - I try to make sure I eat as much as I can before hand and just walk in the hills for hours. I'm thinking I might crush it all up in to a powder - that way at least the doses should be more consistent.
  16. Phil

    Micro Dosing

    Good morning Dallas Denny - yep, that's my worry. My overriding concern is having to do this when I'm at your time of life or even older - I cannot imagine that it gets easier.
  17. Dallas Denny

    Micro Dosing

    G'mornin Phil As a guy about to turn 72, I can so relate....unfortunately, in my opinion, there's just not enough anecdotal evidence yet to show that micro dosing is an effective treatment for clusters.....a scant few claim success but 1/10th to 1/20th of a recreational dose (175 - 350mg) is not enough for most folks to reach a therapeutic trip level ! Dallas Denny
  18. Phil

    Micro Dosing

    Hello everyone - I'm looking for some assistance. Firstly - I've had great success over the years after finding you all - so thank you. I'm episodic, and take MM for approx. 6-7 months of the year, once a month - that's from Sept - April and mange to keep the beast away. The issue I've got is that I don't really get on with the MM - like everybody else, I've got pressures at work, home and with kids - taking these things when I was young and care free was fine, but the realities of life as a mid-forties bloke supporting a family sometimes make the experience quite unpleasant. I've got myself a good stash now and am looking to experiment in the knowledge that I can always fall back on busting and the regular monthly cycle that works for me. So - I read some years ago about Micro Dosing, using smaller but more regular doses - what are people's experiences? Many thanks P
  19. Last week
  20. Rod H

    Thank you clusterbusters!

    I too found this place at a dark time. Now my future is so bright I got to wear shades. Alot of good people here that all have one thing in common.
  21. mit12

    Thank you clusterbusters!

    I hear ya, I was ready to end it before I found this site and the good people who give the great support and advise. Pay it forward!
  22. CHfather

    Looking for advice

    Clusterwife', I hope he gets that oxygen soon, and that the D3 regimen might kick in for him. I recently posted a list of things that people who don't have effective medical treatments can do to try to address the pain during an attack, or try to lessen or prevent it beforehand. That list is here: http:// https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61404 I'm a supporter myself (daughter). I have some understanding of how terrible this is for you to endure, too. Thank you for being there for him.
  23. Clusterwife06

    Looking for advice

    Pain is constant during an episode but not during the entire 12 week period pain is severe during a CH itself though in fact its getting frighteningly worse, he does get shadow headaches in-between the CH's during the 12 weeks but he doesn't have headaches of any kind for the rest of the year until the seasons flip again. Thx for the input pebbles and CHfather much appreciated.
  24. CHfather

    Looking for advice

    Clusterwife', You've received a lot of good input, to which I have just a little to add. One thing is that, even though I agree with Pebbles that the doctors might be being overcautious in stopping the Trex injections at all, maybe they'd be comfortable reducing the injectable dosage. The autoinjector contains 6mg of sumatriptan. It has become clear here that most attacks can be stopped with 2mg, or at most 3mg. Many people take apart the autoinjectors so they can measure out their own doses, but your doctors are unlikely to go for that -- but sumatriptan can be obtained in vials, with syringes so the patient can measure out his own dosage, and maybe the docs would let him do it that way, at lower doses. There is also a 4mg autoinjector. I would observe also that if his pain is constant (it's not exactly clear to me), it could well be that he has a CH "lookalike" called hemicrania continua (HC). There are some differences, but doctors aren't usually sophisticated in these diagnoses (and your doctors don't sound great). HC, unlike CH, responds to a medication called Indomethacin. As I say, if the pain is pretty constant, Indomethacin might be tried.
  25. CHfather

    Looking for advice

    Maddie, You probably should start a separate thread so we can focus better on your situation. Just click on "Start a new topic" at the top of the page. Dental surgery often involves the use of an anesthetic that flares up CH in many people. That's not very helpful to know right now, after the fact, but it could help as an explanation, and a warning for the future. Xylocaine is the anesthetic that typically causes CH flareups; prilocaine doesn't. This is a small thing, but it might be relevant: It is sometimes true that O2 significantly loses effectiveness when the O2 in the tank gets low. Switching to a full tank might help. And of course it could be that 15 lpm is just not enough flow for you and you need to get a 25 lpm regulator that allows for a more aggressive breathing strategy. I just posted a bunch of O2 info, plus some other things that might be helpful to you, at this part of the board: https://clusterbusters.org/forums/topic/6213-a-bunch-of-basic-non-busting-info/?tab=comments#comment-61404
  26. Pebblesthecorgi

    Looking for advice

    A steroid "dose pack" is generally like pissing in the ocean and is not enough steroid to expect relieve. If he has a cardiac condition that precludes the use of imitrex that condition should be addressed so he has the option of using when in a corner. I know everyone is cautious about triptans and heart issues but the concern seems a bit overblown when you review the cases and the the FDA reports. My point is if his cardiac status is so tenuous to have an absolute contraindication to triptans then there should be room for improvement. The valium may help him cope with the anxiety clusters can bring but will not exacerbate or diminish an attack. O2 will be very important to try...if it aborts his attacks it is much more likely he could respond to busting methods (my opinion) Proper technique and flow are important before discounting it as a treatment. If you want to stick to legal offerings and D3 isn't helping consider asking about CGRP injections (insist on 140 mg/month to start) Though expensive, relatively new to market and has a few unknowns it has shown promise in treating clusterheadaches. The general consensus is GammaCore is pretty useless although I am sure there are some exceptions. The hospital could help if they give him oxygen properly and/or give him imitrex in a monitored setting. Otherwise not much they can do
  27. Clusterwife06

    Looking for advice

    Update... day 23 of cluster he went Most of Friday all of Saturday and almost Day Easter Sunday, (pm Easter Sunday he had the worst CH he has ever had i have never seen him not be able to control himself he was in so much pain, even aside form these SOB's he has many other painful things happen to him so his threshold is high. I thought he was dying right along with him. I wonder if it was the valium or maybe so intense because he is on such high doses of the methypre. I waiting right now for the Dr. office to open I am praying she has good news about the O2 its been a week. I am so worried the next one will be that bad is there anytime I should take him to a hospital during?
  28. Batch

    Question for batch

    Hey Dana, The Adult 50+ Mature Multi contains most of the vitamin D3 cofewactors/conutrients. It just doesn't have enough magnesium or any vitamin K2. There are additional supplements that can be added if there's no response to the above supplements. They include vitamin C as the human genome and that of all primates lost the gene for the enzyme needed to synthesize vitamin C from carbohydrates. None of the other animals that synthesize their own vitamin C have cardiovascular disease... That's a thinker... Accordingly, 4 to 6 grams/day vitamin C is a good dose. The other supplements frequently added by CHers are CoQ10 and Turmeric (Curcumin). Take care and please keep us posted with your response to this regimen. V/R, Batch
  1. Load more activity

Announcements

×