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  1. 5 points
    Dallas Denny

    Who’s going to Dallas this year?

    That's an affirmative on the pizza and beer Freud! Lmao at "perfect record of resisting honky tonks"......I lived in Cowtown from 68 to 84 and played guitar and sang in bands the majority of that time period.....I imagine I've sang a country song in near about every honkytonk in town!! Sounds like we're gonna have a big crowd with lots of 1st timers this year so really looking forward to meeting all of ya'll...I had the pleasure of meeting Pete in Austin after knowing him online for many years and looking forward to seeing him again......and I've talked to several folks that I've met and known here for a long time ( all from the early days of the board but who are no longer active here) but have never met in person that are coming as well.....AND, I finally get to meet my co-conspirator, err, umm, I mean co-moderator Spiny in person AND, bejeebers is gonna try to make it up from Austin......and, of course, my BFF "hipshot" AKA Hollywood Dan of Nat Geo fame will be there! Shit the bed Loretta! It's gonna get rowdy ya'll......Yeeee Feckin Hawwww! DD
  2. 3 points
    Wow Batch thanks for all the info! I wasn’t specifically looking for an RA taylored program but how is the best way to bump him up. You’re knowledge and desire to help others is honorable! thanks again Brian So my last dose of L was Sunday. Tuesday and Wednesday I actually got 3 hrs of sleep a night. Then I got hit all day yesterday until 3am. Slept to 1030am today which hasn’t happened in 4 months. I’ve only had one CH today so far! So I’m probably going to dose w L tomorrow. And stretch it out a week at a time to a month if I can make it. Then monthly doses. I’m getting ahead of myself but it just might be working again!
  3. 2 points
    MoxieGirl

    Newbie here from Iowa

    Oh! Good to know CHF. You can tell how long it's been since I've checked out the files section. hehe Jeff - you may find some knee-jerk negatively to doctors in general on this forum. If not from others, certainly from me. I can count on 2 fingers how many doctors have impressed me and earned my trust in relation to headaches. I drove home in tears on Thursday after seeing a 'headache specialist' who failed to listen to what I was saying or respected the fact that I know my body, and my headaches, far better than she ever will. If your doctor is good, that's awesome, and rare. Don't let her go if you get on with her well and what she prescribes works. If you follow the typical path, you will get prescribed one thing after another as each one stops working or the side affects become worse than the clusters. This process might take months, might take years. And I'm not saying it isn't worth doing, some people get considerable success from what doctors prescribe. So you have to be willing to try it. I played that game for 5 years until I literally had my calendar in my hand (well, on my computer screen) and I was picking a date on which to exit planet Earth. Then I remember someone once told me about this forum, and I'd bookmarked at as 'my last resort'. I decided to give myself 1 more year to find a solution to the 5 clusters I was having a day, and spent the next few weeks reading the above mentioned files and asking questions. By the time I had weened myself off Topiramate, I had my own solutions in hand and was ready to try them. That was nearly 8 years ago. I now get about 3 cluster attacks a month, each one lasts 1-5 minutes and barely makes me pause from whatever it is I'm doing. The pain scale is usually a 1 or a 2. A few times a year I'll get a KIP 6 or 7 that'll last 30 minutes or so. There are answers out there, and solutions that work. Your mission is to find what works for you. Mox
  4. 2 points
    dmlonghorn

    Newbie here from Iowa

    You've come to the right place. We're all "like-minded" individuals. It can seem like learning another language, but with enough research you'll begin to speak it (after 15 years you have a good start) The best place to start on site is the "new user read here first" link at the top. Good luck keeping up the fight. -dm
  5. 2 points
    Freud

    Newbie here from Iowa

    Hi Jeler, welcome to the board, sorry you have to be here. A few things: Firstly your neuro should have prescribed 2 things. One, high flow Oxygen Via a NON-REBREATHER mask @ a minimum of 15-25LPM. Most of us prefer/ require 25LPM. This usually requires you to buy your own regulator. Oxygen typically aborts a CH in 5-15min. You stay on it for an extra ten min or so once the CH aborts. If you don’t have insurance there are other options like welding oxygen setup and you buy your own regulator. Regulator you’d need click on the 0-25LPM choice then you buy the CH (cluster headache) mask setup Cluster mask O2 kit w mouth piece If you do get oxygen from a medical prescriber you want to make sure the supplier you use has M tanks and E tanks. I keep a big M tank next to my bed, one down stairs. And now one in my car. If there isn’t room in the car for the big M tank I take several E tanks w me. I suffered with out oxygen for the first year I had CH. I’m chronic CH so it started about 2 years ago and I don’t get cycles it’s an every day thing... I can’t say enough about oxygen! Secondly, sumatriptan injections not pills to abort the really really bad attacks. Sumatriptan if over used can increase intensity and duration of cycles if you’re episodic. I use mine sparingly. You only get 10-16 a month and I get 200+ CH a month. I save them for when I have something important to do and I can’t bring my oxygen w me. They usually work in ten min or less. Rarely as much as 15-20min for the real bad kip 9-10s (look up KIP pain scale for CH). PSA over :-). Now getting to your current treatment plan. Some people do respond to verapamil like it’s a miracle drug but not most. However you’re dose should be titrated every 7-10days by 80mg increases. Most people that find relief w verapamil need doses as high as 900+mg/day. The immediate release has been shown to be more effective than the sustained release form. You should at a minimum have an EKG done every time they increase your dose to make sure you don’t get heart block. I strongly suggest getting a cardiologist to follow you and make an appointment for a blood pressure check and EKGs. I was on as much as 800mg a day (couldn’t tolerate more, got blurry vision), did that for a year, wasn’t helping, I developed CCB (calcium channel blocker) related peripheral edema. It was significant, put the water in slowly over time couldn’t figure out why I was gaining so much weight. Then all of a sudden I woke up and my legs were huge w edema like a heart failure patient (I’m. Cardiac surgery Physician assistant). I halved my dose, called my cardiologist with my self diagnosis and he agreed time to stop completely. Since I came off a few weeks ago I lost 13 Lbs of water! I still recommend trying it but you can’t give up until you’ve gotten to higher doses. MUST have your EKG and BP followed! Steroid tapers can work for some. Some people get a break and the CH comes back as soon as taper is stopped, others can abort a cycle. Steroids should not be used long term, and they are not benign. Several members here have gotten AVOTH (avascular necrosis of the hip) femoral head dies from lack of blood supply over a period of time and necessitates a hip replacement. It is very rare but does happen. Besides professional help, although many headache centers and docs support what we do here. This site was created to educate and advocate for “Busting”. Please click on the new user blue button on the top of the page. Read everything! Then make a post on any of the private boards, usually theories and implementation... we don’t discuss busting much on the public board. There are other tips and tricks like energy drinks or shots. They don’t work for me but others swear by it. If you want a good laugh search this site for “cure” and look through the 27 pages of results. I started w the oldest post first and went from there. People have tried almost everything you can think of like drinking their own urine to hot pepper sprays in the nose and a lot of others. But I can say this for certain this site and busting has saved lives, gives people hope (you’re not alone) May think about attending the national conference in Dallas this sept 19-22. There will be a lot of survivors there some with 20-40+ year histories! And lastly there is @Batch‘s Vitamin D protocol w cofactors. He has stated it can be just as effective as busting (helps about 80% of us I think) it does require some lab tests your primary or neuro need to order)but I’m sure he will chime in and make suggestions. I’m sure I’ve left something off but this is a good place to start. Please click on that blue button and dive in head first. Looking forward to hearing more of your story and questions. Pain in free wishes (PFW) Brian
  6. 2 points
    Batch

    Who’s going to Dallas this year?

    Freud, Providing information outreach on RA is a little out of my comfort zone... That said, as it falls in the autoimmune category, RA should respond to vitamin D3 therapy. The only question is how high to take the vitamin D3 dose/25(OH)D response, how much the cofactors need to be increased and any additional conutrients specific to RA that may be needed. The anti-inflammatory regimen is a good place to start, but the target 25(OH)D may be well North of 120 ng/mL, like 180 ng/mL for RA. I say this as I've been there at 188 ng/mL and it depressed my PTH as expected which is good. The only issue is being careful not to depress PTH to zero as we need the parathyroids to continue functioning and not shutdown. The reason for this is simple, we need PTH to maintain calcium homeostasis that maintains serum calcium within its normal reference range. In this case, I pushed my PTH down to 10 pg/mL when the normal reference range is 14 to 64 pg/mL as you'll see in my lab results. This is no different than taking prednisone at too high a dose for too long. The adrenal glands produce the steroids aldosterone and cortisol that are essential for normal healthy physiology. If we take too much prednisone for too long, the adrenals say WTF. Why should I make aldosterone and cortisol when there's so much prednisone floating around... so they shut down. That poses a big problem when you stop taking prednisone and the reason why it is absolutely essential to taper off steroids gradually or only take steroids in short burst doses or week to 10-day tapers. I'm a pragmatist when it comes to preventing CH with vitamin D3 therapy... The expected result of taking the anti-inflammatory regimen is a CH pain free response. Accordingly, I take as much vitamin D3 as needed to stop my CH. This allows me to maintain a very good quality of life, in excellent health, free of terrible CH pain. My lab results for 25(OH)D, calcium and PTH in the following chart are a good example. On the 1st of March, 2018, I increased my vitamin D3 dose to 40,000 IU/day in anticipation of a heavy Alder tree pollen fall in April. On 20 March I had my labs done and my 25(OH)D was 188 ng/mL. As I was CH pain free I dropped the dose to 25,000 IU/day. As you can see, my serum calcium was still within its normal reference range and PTH was low. In early June, I suffered a major insult from mold spores that triggered an onerous allergic reaction (allergic rhinitis) with a flood of histamine. Histamine can make nearly every CH intervention ineffective... so the CH beast jumped ugly. An electrician had ripped out wall board to replace a 50-year-old fuse box in the house in Pelican, AK were we stay while salmon fishing each summer. Unbeknownst to me, there was a half-inch layer of mold in the wall space from years of roof leaks. Within 24 hours of the electrician's work, the stirred up mold spores had the CH beast jumping ugly at night for the first time in many years. Two days of vitamin D3 at 50,000 IU/day and 25 mg of Benadryl (Diphenhydramine HCL) every four hours had no effect. Fortunately, I had welder's oxygen available and I made a couple of my Redneck oxygen reservoir bags out of clean kitchen trash bags, so the CH hits were more of an annoyance that anything else. However, as we were getting up around 04:30 each morning to get an early start fishing, the lack of sleep had me on edge. Rather than trying to sneak up on a therapeutic response taking loading doses of 50,000 IU/day, I took 100,000 IU/day for two days. The night after the second dose of 100,000 IU/day vitamin D3, I slept CH pain free so I dropped the vitamin D3 dose back to 40,000 IU/day for the rest of my two-week stay in Pelican. I estimate my serum 25(OH)D concentration was around 175 ng/mL in June when the CH beast jumped ugly due to the allergic reaction to the mold spores. That should give you an idea how bad an allergic reaction can be to a CHer. On 1 July 2018, I switched to the Bio-Tech D3-50 50,000 IU water soluble (micellized) form of vitamin D3 taking one of the Bio-Tech D3-50 capsules every 5 days (120 hours) for an average daily dose of 10,000 IU/day. When I had my next set of labs on 12 October 2018, I expected my 25(OH)D serum concentration would have dropped from 188 ng/mL to at least 170 ng/mL. When it came back at 181 ng/mL, I was a bit surprised. As I was blissfully CH pain free, I decided it was time for one of by 25(OH)D burn down tests so stopped taking any supplemental vitamin D3, but I continued taking all the cofactors and conutrients. My 25(OH)D serum concentration was 136 ng/mL at my next set of labs on 14 January 2019, 95 days later, for a monthly 25(OH)D burn rate of 14.2 ng/mL.. As I was still CH pain free, I decided to try taking one Bio-Tech D3-50 water soluble capsules a week for an average daily vitamin D3 intake of 7,142 ng/day. At my next set of labs a little over 3 months later on 26 April 2019, the results came back at 152 ng/mL, so it was very clear the Bio-Tech D3-50 was more potent in terms of elevating/maintaining 25(OH)D serum concentration at the same dose as the oil-based liquid softgel vitamin D3 formulations. I'll cover a lot more about this regimen at the Patient Conference in Dallas. Looking forward to seeing all of you there. V/R, Batch
  7. 1 point
    Jeler

    Newbie here from Iowa

    Have experienced cluster headaches for 15 years now. Finally went in to neurology for exam. Diagnosed as cluster headaches. I started on a small dose of prednisone for 5 days, a week later began 100mg verapamil 3x/day. Those doses began 20 days ago. I have not noticed any significant reduction in headaches (average 4-6/day) and is very, very depressing. If things do not improve soon I might have to search for more professional help. But for the time being I'll continue on with my research here. I've visited other forums/sites but ClusterBusters seems to contain much more information and it's also very active. Have been reading thru some of the topic's/messages here and have found a vast amount of information. Of course I need to study more here and figure out what all the acronyms stand for! Thanks so much for making this forum available. This is my 1st post so I hope I've posted it in the correct board. Jeff from Iowa City
  8. 1 point
    As you've probably gathered, we're not keen on BS. Don't pull our strings by saying one thing just to get people to check out your posts. I've actually ignored this post until now specifically because it had the word 'cure' in it. What you're describing is an abortive, please describe things correctly in future posts, it really helps and makes you look less like a jerk. Sorry, I know that's strong and a bit below the belt. But we are dealing with serious issues here, and we don't need misleading posts. Some people already struggle with trying the concepts we discuss here, and we need to be honest about what we tell them, and not misleading. For the record, my nose runs when I have a bad cluster, and does nothing if it's a moderate one. I also have an abortive that I found worked 100% of the time. It never failed me. It involved pinching my skin to create a fold, and then pushing a hypodermic needle through the skin, and out the other side so the needle ends up laying flat against the skin. Would normally only take 3 or 4 needs for a complete abort, although you can put a 5th one just for fun, if you want. The way this works is that the brain can only process one source of pain at a time. So by introducing another intense pain elsewhere, it leaves the cluster to go investigate that new pain. I don't recommend this to people who don't know what they're doing and aren't a bit weird like me. Nor would I ever call it a cure. Mox
  9. 1 point
    Moxie Girl's first rule of clusters: No two clusterheads suffer the same, and as soon as you figure yours out, it changes. I certainly agree that our diets have a lot to answer for. The absolute rubbish that goes into some of our foods, the manufacturers should be in jail! Everything is worth a try. Like you say, everyone is different and what works for one person won't for another. But I shy away from the word 'cure' when it comes to clusters. I know people with 4 and 5 year period of remissions, and even longer. Come back to us in 10 years, if you're still pain free all that time, we'll be impressed. Mox
  10. 1 point
    Rod H

    Newbie here from Iowa

    Jeff fellow Iowan here. I'm in Winterset. Moxie uni is in Cedar Falls isu is in ames. But everyone knows iowa city is where the best college is at. Jeff I've been battling the beast for 18 years. This place has definitely given me some pain free time. Read the whole sight and ask away we are here to help.
  11. 1 point
    spiny

    Newbie here from Iowa

    Since your Verap is taken three times a day it likely is not EX or ER - or Extended Release. I used to take mine noon, 6pm, midnight. I was almost strictly nocturnal, so I tailored the meds for those hits. It will say on the script if it is EX or ER. Long acting is normally taken twice a day. Are you still on the Pred too?
  12. 1 point
    Freud

    Newbie here from Iowa

    And none of us mentioned everyone with CH or a look alike (they all fall in a constellation of disorders called TACs triginal nerve autonomic cephalgias) you should have your noggin scanned to rule out a treatable aneurysm....
  13. 1 point
    CHfather

    Newbie here from Iowa

    Moxie is a great source of advice. I just want to mention that the "key files" she refers to here are linked to in the "New Users...." info link that is at the top of each page in blue. Didn't want you worrying that you might have missed some critical information.
  14. 1 point
    CHfather

    Newbie here from Iowa

    Jeler, You've got great advice here so far. Plenty for getting on the right track. Some of the same information is repeated and expanded in this post, along with more detail about things that might help with the pain while you're taking care of the critical things: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Yep. Your doctor isn't very good. It's great that s/he diagnosed your CH at your first visit (assuming that you actually have CH*), but the prescribing . . . not so good. You might be able to get by if that doctor will listen to what you tell him/her that s/he should be prescribing, because we can help you with that, right down to what a prescription for oxygen should say. But if this doc resists O2, higher doses and proper administration of verapamil, and injectable sumatriptan, you need to look elsewhere fast. (You might not need the verap in the long run as you use the D3 regimen, but that's a different matter.) * Given the symptoms you describe, it's possible that you have a CH "lookalike" condition. Tell us a little more about your symptoms and when you get your "headaches." The "lookalikes" have a straightforward treatment, a medication called indomethacin, and some people think it should be tried early after a CH diagnosis to rule out the "lookalikes," which are called hemicranias. This is basically good advice, and it's probably what a doc would prescribe (Imitrex). But you can get sumatriptan in vials, with syringes, to measure your own injections, and that's a lot easier than disassembling the autoinjector.
  15. 1 point
    Freud

    Newbie here from Iowa

    I forgot to mention if you do get sumatriptan injections ask to get the 6mg/ injection auto injectors. You can take them apart and get 2-3 doses out of each. This way you would double to triple the amount of injections you get. I can walk you through this and steer you to some YouTube videos if you get them.
  16. 1 point
    Freud

    Newbie here from Iowa

    We are? Lol JK
  17. 1 point
    Batch

    My latest Vitamin D Results

    Hey DM, If the CH beast is still jumping ugly, I'd take a 50,000 IU loading dose for 4 to 5 days then drop back to a new maintenance dose of 15,000 IU/day. If there's no joy after a couple days at a maintenance dose of 15,000 IU/day, take two more days loading dose of 50,000 IU/day then drop back to 15,000 IU/day as the maintenance dose. Slow and sure is fine for a train going up grade, but not for taking vitamin D3 to prevent CH. Cut to the chase and elevate your serum 25(OH)D as fast as possible to get the CH pain free response. Glad to see you're taking the Kirkland brand Adult 50+ Mature Multi. Among its vitamin D3 cofactors is boron. Boron plays a very special role in this regimen by down-regulating 24-Hydroxylase, the enzyme that hydroxylates vitamin D3 to 1,24,25(OH)3D3. This is a genetically inactive vitamin D3 metabolite the body breaks down and eliminates in urine so down-regulating this enzyme prevents the needless loss of serum 25(OH)D. Take care and please keep us posted. V/R, Batch
  18. 1 point
    Batch

    Gingavitas update

    I get a deep clean every 3 months. I've done this for the last five years... Smartest decision I've made in that time frame. Gingivitis is an infection that can easily trigger a CH cycle for episodic CHers and increase CH frequency for chronic CHers. Unless you're among the lucky few who don't have toenail fungus, the following may help. A constant fungal infection can also trigger CH during in-cycle times. Coating the affected toenails with Vicks Vapo Rub or soaking toes in a 50:50 mixture of Listerine and white vinegar can work wonders. Vicks works for some as it contains antifungal ingredients such as camphor and eucalyptus oil. Listerine contains thymol and menthol that act as anti-fungal agents. When combined with the acetic acid in vinegar which lowers pH below where fungus survives, this combination works great. It's best to use an extra large finger cot with either method to keep the therapeutic agents on the infected area and not on sheets or carpets. Soak a tissue in the Listerine and vinegar mix, wrap it around the toe then roll on a large finger cot. A hot soak in Borax or Epson Salt can also be effective. It worked great on my horse's hoofs. Take care, V/R, Batch
  19. 1 point
    When you find another doc dominate the conversation, be brief & on point. Just a suggestion.
  20. 1 point
    Freud

    This helped me- hopefully will help others

    Unfortunately many people have posted about diets here. Be it keto diets or histamine free diets, some have said it helped them. However, some times it’s just coincidence. Spontaneous remissions do happen to episodic and chronics. It’s rare, but I am skeptical. Like Dana says it’s no cure but may have been a trigger for you. We all have different triggers. If you want to see how many people found a cure only to find out it wasn’t search in the search field for “cure”. Start with the oldest post and read to current. There are over 25 pages of cures. I hope to god you never get another CH. but please don’t use the word cure here. Thank you for sharing hopefully it helps someone else.
  21. 1 point
    I’m glad ur doing well, but be vigilant, the truth is it is not a cure, just a preventative. Not even shrooms are a cure, clusters can change at any given time for whatever reason and break through whatever treatment you are using...now that you have your clusters under control, definitely would be worth while doing the d3 regimen along with preventiative busting (if busting is something u are prepared to do, probably worth it IMO)
  22. 1 point
    Bless the one's who stand behind us when we need it & with us when we do.
  23. 1 point
    Hey Gail, There is no secret. Cluster busters openly talks about what mushrooms can do. Look at the top of this page, it has a new users read here first link. https://clusterbusters.org/forums/announcement/6-new-users-read-here-first/
  24. 1 point
    Freud

    Treatment For my gingivitis

    The take home point here is that if they use a numbing agent; they use one without epinephrine.
  25. 1 point
    jon019

    Cluster after 30 Year Hiatus

    Hiya plhbn...sorry the beast found your address....but welcome aboard sleep, stress, food, barometer, activity CHANGES (like vacations) were ALL triggers for me...I stopped trying to figure out which one(s) because it basically came down to ANY changes in routine. Makes for a restricted life...yet another present from the beast. Depressing way to live...which is why forums like this to help figure a path out of the darkness.... triptans in various forms have been reported to cause rebounds and/or lose effectiveness...the goal is to make them a last resort abortive. I had my best luck with Zoming nasal spray (5 mg)...oral tabs were worthless to me....too slow. injectables effective but felt like killing a flea with a hammer and SO DAMN expensive.... OXYGEN OXYGEN OXYGEN...saved my sanity...perhaps my life. best reported success with high flow (>15 LPM) or demand system, the proper non rebreather mask (one such priceless gem available at clusterheadaches.com), and proper technique (there are several.... including breath and hold, hyperventilation)….if no medical available welding O2 is the same stuff in a different labelled tank...quite safe and usually cheaper.... energy drinks at first sign of hit and while racing for the o2 proved quite effective for me....triple strength coffee early in career, then the energy drinks came out. all taste like ass soes yur looking for content first: at least 100 mg caffeine per serving and at least 1000 mg taurine (caffeine booster). Buy by content and price...I get mine at outlet stores for $1 per 16 oz can (good for 2 hits). Red Bull too expensive and lower in the ingredients you need.... I have not heard this from others... but my first thought was perhaps you've developed a tolerance for diphenhydramine or there is some kind of rebound effect going on like with triptans. I'd try weaning off for a while and/or trying melatonin for sleep. many a clusterhead finds it helps with nocturnal hits.... interesting comment re reasoning and memory....I had quite the opposite. used to do a lot of critical writing at work and would almost wish for a cycle when I had an important project...seemed to sharpen and clarify my thinking....out of cycle it got all muddy. similar to depression...in cycle no problem...too busy...out of cycle...DAMN! Best Jon
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