Jump to content
ClusterBusters

Leaderboard


Popular Content

Showing content with the highest reputation since 09/13/2019 in Posts

  1. 6 points
    Freud

    Quick update

    Hi all, I have some great news to report! I am on my way to being PF and getting my life back thank to so many of you. The vitamin D protocol is doing most of the heavy lifting so to speak. I’m coming off of my best week in over a year but who’s counting. I live in the moment... I will give a full update ASAP. I am still figuring out the best way to utilize the ketamine. However it is helping a ton as well. I personally have a super high tolerance to most anesthetics. Therefore. My starting concentration although a moderate dose will probably be bumped up a bit after discussing my usage and results w my doc. I promise I will make a more detailed post ASAP. I think ketamine should be a weapon in the arsenal to treat uncontrolled CH. I don’t find it intoxicating unless I take a big dose 20+ sprays... 10 sprays at (50mg/ml or 5% solution) and I start to get some help. As it is a dissociative (I have not dissociated yet...aka k hole). At 4-8 pumps I feel mild distraction from the CH. usually enough to take an edge off. However if I have down time and a bad CH I will go to 10-20pumps. This is not what I recommend for everyone! If you do try it. Start low and go slow is my advice. Most people do not enjoy being dissociated from what reading I’ve done on recreational use... but for a kip ten I say bring it on. I have only had one Kip 10 since starting it =-). BBL with more info. looking forward to seeing y’all in Dallas.
  2. 5 points
    Clusters do not cause any known physical damage. Of course each clusterhead has their own personal hell of psychic damage which could range from mild depression to defiance to PTSD-like manifestations. Mental health challenges can cause legitimate physical problems. The other issue becomes imaginary thinking. We spend lots of time trying to figure these things out (triggers, weather, meds, habits, etc. its easy to try and explain every anomaly we experience in the context of clusters but its often unrelated.
  3. 3 points
    Joshua

    Emgality for episodic

    Hello everyone, I thought I'd throw my .02 cents in re: Emgality. I've been episodic since I've been 18 years old, I'm 45 now. The episodic cluster dose as noted above is 3 injections monthly until cycle ends. Yesterday I took my second round of 3. My cycle started mid summer in earnest and I was up to 5 cluster headaches a day. Verapamil and the usual prevents prevents weren't working, and although my D3 level was normal, the regimen wasn't helping this time around (it had in the past). So I started Emgality on 8/15 and my 5 a day went down to about 2 a day, then skipped days, and as of today I've been about 7 days PF. So, Emgality YAY! - or maybe not? The question I"m asking myself is whether this is due to the drug or the seasonal change towards Autumn. The PF days started just as the weather started to get cool where I am. Either way, I'm happy to not be getting any more attacks, and I took another monthly dose yesterday just for insurance. If I remain PF, I may see what happens mid-October and see if I get get off meds. This site and CH.com have been lifesavers for me in some pretty dark times, thanks to everyone who posts here. Joshua
  4. 3 points
    Freud

    Emgality for episodic

    Um, He couldn’t state enough how he thinks the conference is going to be life changing for me and every CH patient especially CCH. Should attend at least once. He thought I have been dealing w CCH a longer than 2 years and said “Oh man, you’re still new at this.” He stayed several times he would like to spend time with me st the conference and talk more. He said he has several veterans he wants me to meet and would introduce me. He mentioned a few of you guys. He said although the emgality data wasn’t that good for CCH he does have a few patients that have responded. And not just w reduction of CCH. He said “home runs” like he hopes for me. He wants to get me back to work ASAP. He was very supportive of @Batch‘s work and told me to keep following his lead. Don’t wait keep busting. Don’t wait on emgality, start it now. It takes some time to get. Insurance rejects it, he appeals, they reject again, he contacts Lilly and gets me in some kind of free program. I don’t have to do a thing but wait my old doc didn’t know or do any of that. Just wrote the script (the wrong one I might add(I never tried to fill it)). He is concerned about me making it to Dallas on a plane. Offered me prednisone to start before I go. I told him they didn’t do a thing for me the first time I tried them and with a couple of board members having hips done recently I’d pass. My plan is to use the max amount of trex I can a day (4 zembrace) if needed and pay for it later... especially on the plane. But my friend who came with me told him “he’s tough as nails and wouldn’t have a problem. I would get there fine.” I drive during kip 8-10s. I try and not drive w 10s. But some times it happens. I keep a M tank in my cars. Some times it works some times it doesn’t. My first CH was a 3 hr kip 10 30 min into a 3.5 hr drive... it’s not for everyone and not too many people have had 25% burns... I just have to maintain some kind of life... I can’t operate/ work with one but I’m thinking about switching to the dark side for a while and doing something in industry... have to give this D more time to kick in but if all I have is some kip 4/5s and I can get a little more sleep than I have been I could do an industry job. Think thats basically it... i forgot to ask how long it might take to see results w emgality. Will find out in Dallas when we talk again. Unlike most docs he wants to leave my f/u appointment up in the air and corresponding with him him sending him updates would be more than sufficient for now. He can refill my ketamine electronically as well as the emgality when I get it... fyi to anyone getting ketamine nasal spray. Price varies a lot. I’ve been quoted $225 for the full script as well as 60$. It’s a slimey world out there. One place said “it would be cheaper for you to get it off the street!” I just hung up I will make a post about my early experience w the ketamine from strength of script, what you need to have your doctor order as well as how it helps me and all it entails... sorry to hijack this thread but I don’t want to make a post titled my appointment w dr... just seems strange to me
  5. 3 points
    ...oops...forgot to mention...for those of you fortunate souls who will be conferencing...absolutely do not forget your mask and regulator (been there!...so did the redneck bag...read up on that just in case)...do NOT check in your bag (sometimes I think the airlines lose stuff just for fun)..and be prepared to explain "WHAT'S THIS!?" when TSA spots these items in your carry-on x-ray. The ONLY time I ever got stopped and questioned in a screening check...…………..they were cool when I explained.
  6. 2 points
    Quick reminder, pleaae share on the forum so those who cannot attend can learn. Thanks in advance and have a wonderful conference!
  7. 2 points
    Can't wait to meet y'all!!
  8. 2 points
    Back when I was flying more, I would run in to the occasional TSA agent that would seemingly have no idea what my regulator was and I'd get pulled aside to "discuss" this mysterious item. During a thunderstorm ground stop in Charlotte I was making use of the extra time to smoke a cigarette (long since quit), I struck up a conversation with a member of the TSA and eventually the conversation turned towards my regulator. She told me that the reason I was getting checked so much was that the regulators are hard to ID in my bag when going through the x-ray machine and thus triggering a manual check. Her advice was to place the regulator in the tray beside my laptop or shoes and she could almost guarantee I'd have no issues going forward. She was spot on....never a minutes trouble since then. Of course YMMV. On a related note, if you are packing regulator(s) in checked bags, expected them to open the bag up and take a look. Just the way things are these days. I imagine they'll have a field day with the bag I'm packing with 6-8 different types of O2 equipment for my demo. No biggie......as long as it gets there.
  9. 2 points
    Yo Ken...for future reference....I regularly travelled while in cycle and either had O2 delivered to hotel or picked up from shop myself...CA, NV, OK...same price same great service as home. I used Lincare…. but noted from website that Apria has same/similar program. They ask for 30 day notice... Best Jonathan
  10. 2 points
    Hey Ken! Just bring your mask and E tank regulator.....clusterbusters will have O2 cylinders available to check out and take to your room! DD
  11. 2 points
    @Dana129 I wish you didn't worry so much. My chronic cluster headaches began without warning. Three every night, all kip 10s. When I saw the videos, I was in auch a state of denial 'not me'. Well it was me that accidentally shoved my head through the wall, bruised my body terribly but didn't notice till the next day etc. I had the 'fear' of attacks only briefly because they were coming & I had nothing to stop them back then, fear soon became pointless. Look at me now, pain free sleeping through most nights. I still have Complex Chronic PTSD (unrelated to cluster headaches) and the treatment is helping that too. See? Hope is all over this forum! Edited to add: If they ever return, I know how to stop them.
  12. 2 points
    Woo Hoo!! Sittin on ready and rockin on go BOF!!! Looking forward to seeing old friends again and making many new ones!! Looks like there's gonna be a lot of 1st timers!! As she stated above, if not this year then start making plans to make it happen next year.....the experience of a lifetime for a clusterhead and something you'll never forget!! DD
  13. 1 point
    Hi, everyone! I'm Chaunté! My husband Zach & I will be heading to Dallas from THE Buckeye State (OH-IO!) for our first Clusterbuster Conference in just a few days! Seemed like fate that we have close family who live in Dallas! Day 219 since the Beast decided to rear its UGLY head. It then provoked me to crawl up to my peacefully sleeping husband, I woke him up in hysterics and said " If I fall asleep now, I'm afraid I'll never wake up again. I think my brain is bleeding." That first day was the 1 month anniversary of our marriage I REALLY should have said " In HEALTH and sickness" instead of the traditional way! (We're HARDLY traditional anyways!) 219 days of cluster headaches later................ we're headed to Dallas!! Everyone told me in the beginning, "Stay strong. This won't last forever." About 2 weeks in, somehow I just knew this was going to be a longer journey than what I was being told. CH has (sadly) altered the person I was. It breaks my heart! However, I'm overwhelmed with emotion when I think about meeting all of you who experience the life-changing pain that I do. And can my poor hubster meet just ONE friend who really understands the 50 Shades of Crazy I go through during an attack? Haha Honestly, I'm more than blessed. He's basically a saint! Gahhhhh!!!!! I'm excited, nervous, overwhelmed, anxious, etc, to meet everyone!!! Is there an itinerary for the conference I can print out? XO, Chaunté
  14. 1 point
    CHfather

    Emgality for episodic

    Thanks, Freud! I feel like there ought to be a simple pinned post in the CB Files section about proper Emgality dosage. Fingers and toes crossed here that the D regimen is doing some magic for you. Anything else to report about your appointment with McGeeney?
  15. 1 point
    Freud

    Emgality for episodic

    So folks apparently there is a lot of confusion about the dosage. From the horses mouth: Dr McGeeney said the correct and only dose for CH is 300mg a month every month. He said everything else is only for migraines! He said the correct info is on their site if you look in the right place. My previous doc wrote the wrong script as well and he was a major headache center guru! I never tried to fill it. I have started the process to get it... let y’all know when/ if I try it. I say if cause I’m pretty sure the D is starting to work! I’m not PF but it’s a hell of a lot better yesterday and today. Today was the last dose of my second load w target 25(OH)D3 of 140!
  16. 1 point
    I noticed there’s an Apria Health very close to the airport. I was going to see if I could get tanks from them and bring to the hotel. Has anyone tried this in a city you don’t live in? Very excited to finally meet some people with the same “challenges” that can be a good life.
  17. 1 point
    CHfather

    Energy drinks

    A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her! She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it. The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else. It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through. For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack. I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them. I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there.
  18. 1 point
    Clusterbusters will have O2 available Ken! I'll be looking forward to meeting you! This will be my 5th! It's an experience you'll never forget!! Dallas Denny
  19. 1 point
    This will be my first conference and the farthest traveling from home since I discovered the huge help oxygen is. Has anyone had good/bad experiences trying to get oxygen (I go through Apria) while traveling?
  20. 1 point
    Conference starts in less than 2 weeks! If you've never been & can go please do!
  21. 1 point
    Racer1_NC

    Conference Cultivation Workshops

    Damn it Denny....you mean I have to lug a thumb drive all the way to Dallas??!??! What kinda rookie operation is this?
  22. 1 point
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    Yes it appears that the B1 is no longer suppressing my cch, still finding pain levels are lower with D3. I’m not sure why B 1 stopped working. There is nothing I can think of that has changed in myself or my environment. I am going to take a break from B1 for 4 weeks and let it leave my system and try again, this time frame is just easier for me to remember, no science behind it. CH has a way of being a challenge and seems to always change and morph around what ever I throw at it. Peace and my you find pain free days.
  23. 1 point
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    Batch thank you, 20 K of d3 seems to be my daily dose needed, still taking b1. The last few weeks my cch has been suppressed. Enjoying life and learning to smile again, I couldn’t have done it without this place. Hope your days are pain free, peace.
  24. 1 point
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    something new for me is a deep sleep, also changing my dose to one dose of B1 400mg am and see someone on facebook emailed Dr. Constantini and asked these questions: Q1- Was your healed patient taking any other vitamine supplement1 (Omega3, D1, Magnesium and adult multi-vitamin, etc.)? A1: The patient didn't take any supplement Q2- Are you aware of cases where the B1 treatment isn’t working? A2: We only have three cases in treatment and they are responding. We also have 10 cases of chronic migraine and episodic migraine and all responded wonderfully to our therapy, with the complete remission of the symptoms. Q3- Do you have another future experiment planned with B1 and CH? A3: We will continue treating the cases which we visit in the next future Q4: For episodics like me, do you think I should start in between sycles or just wait for a cycle to start? A4: For episodics like yours, I'd suggest you to take the therapy when you have the first attack, with 500 mg in an only administration in the morning. Q5 Since vitamine B6 is linked to the Dopaminergic Systems functions, was vitamine B6 examined by your research? Was vitamine B12 examined as well? A5 We didn't examine B6 nor B12. Q6: Would you recommand taking 3 doses during the day of B1 or one a day? A6: We recommend to take the total dose all together in the morning at breakfast. Bruce He sent me these as well as all cases where Dr. Constantini treated diseases with huge intakes of B1 to treat MS, Fybromialgia and Parkinson; all so called auto-immune diseases..
  25. 1 point
    some facts from wikipedia Light-exposed mushrooms may provide up to 100% of the recommended Daily Value of vitamin D.[4] Vitamin D also modulates neuromuscular function, reduces inflammation, and influences the action of many genes that regulate the proliferation, differentiation and apoptosis of cells Vitamin D is a group of fat-soluble secosteroids, the two major physiologically relevant forms of which are vitamin D2 (ergocalciferol) and vitamin D3 (cholecalciferol). prevention of hypocalcemic tetany while sufficiency prevents rickets in children and osteomalacia in adults The usual cause of tetany is lack of calcium, but excess of phosphate (high phosphate-to-calcium ratio) can also trigger the spasms. Milk-and-alkali tetany is an example of this imbalance. Underfunction of the parathyroid gland can lead to tetany. Low levels of carbon dioxide cause tetany by altering the albumin binding of calcium such that the ionised (physiologically influencing) fraction of calcium is reduced; the most common reason for low carbon dioxide levels is hyperventilation. Low levels of magnesium can also lead to tetany symptoms. Rebirthing-Breathwork, purposeful rapid breathing for one - two hours at a time; first causing hyperventilation, can sometimes lead to tetany. Cow grazing on rapidly grown pasture with tetany of the neck suggesting Grass TetanyAn excess of potassium in grass hay or pasture can trigger winter tetany or grass tetany, respectively, in ruminants. Osteomalacia in children is known as rickets nerve disease The most common cause of the disease is a deficiency in vitamin D, some of this stuff you can find on migraine sites ,or here o2 magnesium rickets is said to be painfull steroids etc ,
×