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  1. 5 points
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    https://scholar.google.fr/scholar_url?url=http%3A%2F%2Fdownloads.hindawi.com%2Fjournals%2Fcrinm%2Faip%2F3901619.pdf&hl=fr&sa=X&scisig=AAGBfm1vtUTuZ_cQpBApdV3xiS688Nwr2A&nossl=1&oi=scholaralrt This link was posted on Facebook Saturday, a medical article about one patient using B1 for cch. I'm 11 years cch, o2, d3, lsa, I get some daily shadows and then 5 - 7 hit. I started taking B1 200 mg Saturday evening, Sunday took 300 mg with a very light pm hit, Monday took 400 mg through out the day, no shadows or 5 pm hit, Tuesday went back to 300 mg still no shadows or evening hit. I'm not sure of anything, but it's been a rough last 12 months, if B1 help one man... I will try it and see.
  2. 5 points
    Dylan the potato

    Stay Strong

    I've been thinking a lot about the psychological toll CH can have on someone. Even before CH suicidal thoughts always seemed to follow me wherever i go. I always had my doubts in myself. I've always had doubts i was strong enough to be able to keep going. I had trouble coming to terms with having CH and that it even existed. The pain was always a reminder that this is real. That i have this. That too many people have this. I'm still pretty new but I'm not quite as helpless as i was before i first joined I've been finding my way. I don't have much in the way of super helpful advice for anyone or even much to say that's very noteworthy as i haven't quite gotten the hang of all this yet. Still at the very least i want to say to everyone who's new to this or that is struggling in general please hang in there. Stay strong and don't give up. We have to take this all one day at a time and keep pushing forward. You are not alone. Don't doubt yourself or your resolve. You ARE strong. I see so much unity in this community and so many people helping each other out whether it be with advice straight up emotional support or both. This is an awful thing to have but its brought many of us together. That is something and whenever i feel i have no one who understands i like to read what people are up to here. For everyone out there,you are an ox...a strong,resilient,antique breaking ox.
  3. 4 points
    Hello gang: I need to report in. I'm Checkin' in like Gunga Din. As I posted over a year ago: "However those of you who have let me whine here for the last decade or more know that I keep the [ triptan] injections handy - and I take a healthy dose of Verap. every day all year - I have the big big O2 tank in the hall all year - I have tried a visit to the Portuguese wizard, busting with shrooms, Chinese doctor and herbs - nothing but licorice water for a week, water water water, exercise rapidly, ice on the carotid artery, steroid dose pak, Cluster vitamin regimen, Opioids, benzos, advil, melatonin, a Shaman in the Navajo tradition, Hot water pads, every other god dam thing. In the end; every single cluster cycle required absolute submission to the Beast in varying amounts before I can see the light. " By chance, this year in April which is the inevitable early part of my annual cycle, my mother-in-law brought me a bottle of CBD oil made from Hemp - no cannabis no THC . Having tried all of the crazy stuff above I am open to anything. The beast came knocking one evening in April it was the first of the season that was more than a shadow. I assumed the position on the floor and got my ice bag. Then I took a full ml. of the CBD sublingual. The attack aborted in minutes. I used that small hemp oil vial in a bout 15 days. My research led me to understand the "Entourage Effect " of cannabanoids. (I don't like to drop links in this board so Google it) I got my medical card and bought a CBD compound which is "Whole Plant Medicine". Not enough THC to even contemplate the tiniest buzz, but medially, enough to keep the CBD in concert with the other the other therapeutic compounds in cannabis. I have not had another attack since April. This is the first year in 10 or more years that that has happened. I know CH Father has commented that the results and reports on CBD are all over the place and this I see as I have looked on the boards. However - having been here since the early days of the "old board" I just had to let you know of this amazing outcome. Now - I have felt the beast trying to break in on a few occasions, which to me only adds credence to the results I am having being attributed to the CBD. A PF summer -- who ever heard of such a thing ? I hope to keep reporting these positive results. Wishing you all well. TomSwift
  4. 4 points
    Dylan the potato

    Having pain downplayed

    So im a tad nervous. I've been diagnosed for a little while and i haven't yet actually interacted with anyone else who deals with this before and i thought here would obviously be the best place to get other sufferers perspectives. I'm 20 years old though ive been dealing with it since i was 18. Before my diagnosis i didn't even know what CH is and..right now im still adjusting to all this. I've had a tendency to have trouble interacting with people who don't have CH and actually have become a bit fearful of telling others about it due to some actually getting angry with me when i describe the pain I've been dealing with..like they're appalled with how much im "blowing it out of proportion." I've had a lot of negative responses from people i try to reach out. Most people try to avoid me so they don't have to hear about it and i'm not trying to make them uncomfortable i just want a little support. I hate that everyone sees me as whiny and overdramatic now. Any way..im sorry for all the off topic rambling about my current state of mind..i kinda was just curious to hear some other people's experiences with having their pain downplayed or how others have responded to what we suffer with here,and just vent here a little bit, and if maybe there's any tips you have on interacting with others that'd really help..im just kinda confused and lost right now
  5. 4 points
    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..
  6. 4 points
    CHfather

    Just got diagnosed

    Naturally, you should have an MRI. Everyone with CH-like symptoms gets, or should get, an MRI. If you're not going to have an MRI, then you might as well treat it as CH and see what happens. I didn't want to say this in response to your first post for fear of scaring you, but for many people with CH, the first attacks and cycles can be more mild than what they experience later. So you need to learn about managing it. Sumatriptan tablets almost never help CH, because the attacks ramp up too fast for the tablets to take effect. If your attacks are predictable, you could try taking a tablet or two a couple of hours before you expect it, but you really want to try the nasal spray. 80 mg/day of verapamil is a very, very low dose, also not likely to have much effect. Maybe your doctor is proceeding cautiously, and will steadily increase that dose. It also takes a while for verapamil to get into your system, which is why some doctors give a steroid (prednisone) taper to reduce the pain while the verap has a chance to take effect. For your next attacks, try some of the things I listed, probably starting with the energy shot.
  7. 4 points
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    No ch hit yesterday, no shadows, no ch pressure on right side or presents of a ch, an awesome day for me, slept all night the last two nights, I'm having positive results, yesterday took 100mg x4 through out the day, still researching how B1 is acting on ch, found this last night " B1 helps the production of cellular energy and has a calming effect on histamine related headaches ". I had a dexalog shot in okc and it had a B complex with it, not sure of dosing.
  8. 3 points
    Mel98

    A (Pleasant) Update!

    Good evening everyone (well really it's good morning)!! I last shared that I was in the process of being turned down for oxygen by my primary caregiver, and after nearly 5 years of being diagnosed with CH, I was referred to a Neurologist. I just had my appointment earlier today at 11 and.... My doc, James Zhang, asked me a variety of thorough questions related to when they started, the pain level, where the pain is located, triggers, etc. It honestly felt like a drag but I kept hanging on!! Finally, he explained that he is nearly certain that it IS in fact cluster headaches that I am dealing with. He then told me of common treatments for such headaches (Nortriptyline, Amatrex, to name a few), and then he asked if I had ever been given a Calcium channel blocker, and I haven't! So I'll now be taking Verapimil??? soon and see how it works. He also suggested that I should get an MRI just to rule out possible CH mimics, but that's a story for a different time, LOL. I asked him if he had ever heard of oxygen therapy for CH and he told me he had. And then I felt extremely nervous because I didn't want to ask if he'd prescribe me it, assuming he would shut me down as well. HOWEVER, when I got the nerve to ask if I could try it, he happily said that he would write it for me!! And then came the tears- from me and then my mom. <3 <3 <3 Fast forward to me having the script- I drive 30 minutes to an oxygen supplier who tells me that they won't fill my script because insurance won't cover it. UM HELLO MY MOM LITERALLY CALLED OUR INSURANCE THE OTHER DAY TO BE TOLD RATHER QUICKLY THAT IT IS INDEED COVERED. So.... she talks with her manager, and even though it's apparently their company policy to not fill the scripts for CH, her boss decides to give me my Oxygen by having my mom pay totally out of pocket and sending the RX to my insurance with the hopes that they will reimburse my mom at least part of the expense. And I couldn't be any happier! I was only given nasal cannulas for my oxygen and am aware I need a non-rebreather mask. I'm sitting here now recovering from a hard blow of a CH, and staring at my oxygen tanks wishing I could use them. I tried the cannula and the 15 L was so strong it my nose it almost felt like a burning sensation- and definitely didn't help. I need to get a NRB mask ASAP so I'm wondering what is the fastest method of getting one to me? Thank you for taking the time to read this and I hope you have a lovely night!!!
  9. 3 points
    jon019

    After Cluster Headache - Help Please!

    Yo AZ Yes, my CH is diagnosed/confirmed. My doctor prescribed me Diclofenac Sodium / Misoprostol along with Zolmitriptan when there is full CH attack, took both at once. It worked a little but i had no other options. Now i take Diclofenac Sodium / Misoprostol for headaches apart from CH. Well...that's GOOD...ya know what you are dealing with. Why no OXYGEN is a puzzlement tho! At least a try. If Doc says no...or DOESN'T know...get another Doc. It is the first line, first choice, most medically accepted (for decades now) abortive that works near miracles for many. Easy to use, relatively cheap, fast, NO SIDE EFFECTS. Without O2 I would have feared for my sanity and perhaps my life. The first time you use and feel the hit drain away like water you will know... and regret any delay... See these links: http://www.clusterheadaches.com/O2/index.html https://clusterbusters.org/forums/topic/1433-10-oxygen-information/ Re Zolmitriptin. Is it a tablet or the nasal spray? I had wonderful abortive results with the spray (5 mg)....5-8 min effectiveness....18 hr "free period"..99% effective for break throughs after O2, energy drinks, sometimes verapamil failed. Very expensive...just like Sumatriptan. I mighta paid ANYTHING at times tho...……… Me too mostly depressed. As i felt positive to SSRIs, took them for a few months 2 years back. Seems a clinically-depressed case But a physician Doc not a psychiatrist prescribed me SSRIs. SSRIs are good to certain point after that no! their side effects i didn’t like. Now thinking to take Magic Mushrooms to fix my mood and to stop Shadows. Interesting enough there are several antidepressants that have been used for preventive CH treatment. Not much success from what I gather. Amitriptyline was the one I tried...totally ineffective and life altering side effects (getting out of bed was my major accomplishment for the day) YMMV...…. Re MM...you are in EXACTLY the right place...check out the "Files" section. I have no personal experience with that method..... I was introduced to Verapamil after my last CH pain, however, i took them as a try and a preventive med. But very bad constipation problem and leave them. So, i didn’t know much about Verapamil effects What dosage? Did you do a prednisone or methylprednisolone taper first (to break the cycle while the verapamil kicks in...10-14 days). The reported "sweet spot' for clusterheads is 480 mg/dy in divided doses. I used (depending on cycle) 480-1040 mg dy of the immediate release type (the extended release version works for some but fewer than immediate release). Also known as "concrete dust" it definitely can cause constipation. I always made sure to drink LOTS of water and increase fiber intake (Metamucil works too) and did not have any problems...but we're all different... On Verapamil packet it is written Calcium-Channel blocker and Beef contains high amount of Calcium, it can be any connection between CH and Calcium?? Beef is actually relatively low in calcium (tho high in protein) compared to many foods like dairy, some leafy green veggies, soy products, nuts, seeds, beans, canned bone in fish, fortified cereals and juices, et al….see: https://www.healthline.com/nutrition/15-calcium-rich-foods Verapamil does not play well with calcium….should separate intake by several hours… No i have not tested myself for Lyme disease. Might want to think about that if you have other symptoms besides CH trigger after beef intake…or even just that as inflammation from an allergic reaction is DEFINITELY a Ch trigger… Diclofenac Sodium / Misoprostol narrows nerves. In my expirence blood thinner things like Garlic make me down: mood and body. Taking blood thinner myself for another purpose….have noticed no effect on CH or mood….would be interested in others experience. There have been reports of Coumadin being effective for CH for some…so go figure Want to know more from you good-people The D3 info from Batch above is PRICELESS….I’d go for it…. Boring life i am living. With CH…aint nothing boring… Best Jon
  10. 3 points
    Jon, Thank you for the kind words. I've been in touch with the Principal Investigator for the vitamin D3 migraine prophylaxis RCT. He and his team are working the final manuscript for publication. Once that's out of the way and they can find the funding, a follow-on RCT using a vitamin D3 physiological dose of 10,000 IU/day is on their list of things to do. There's a good reason why the mAb RCTs can't achieve better efficacy. When you consider the site of action are neurons within the brain that produce calcitonin gene-related peptide (CGRP) and mechanism of action they espouse is neutralization of CGRP, the first step in these two processes is getting the mAb into the brain. That's a very real problem Big Pharma has yet to solve. The maximum opening size through the tightly packed endothelial cells forming the blood brain barrier (BBB) is a molecular mass of 400 Da (Daltons). The mAbs have a molecular mass of 150 kDa (150,000 Da)... 375 times larger than openings through the BBB. If the mAbs cannot pass through the BBB to enter neurons throughout the brain, neutralizing CGRP within these neurons is a non-starter. My guess is the reduction in migraine days made possible with mAbs is due to reducing serum CGRP. For reference, vitamin D3 has a molecular mass of 385 Da so passes readily through the BBB and into neurons where it's hydroxylated by enzymes to 1,25(OH)2D3, the genetically active vitamin D3 metabolite. It in turn attaches to Vitamin D Receptors (VDR) at the genetic layer initiating the genetic expression that down-regulates CGRP expression... and in the process, prevents our CH and MH. Better living through chemistry... and molecular biology... That's my SWAG... and I'll stick with it until a better mechanism of action is found. Take care, V/R, Batch
  11. 3 points
    The first time I had O2 was in a hospital with a crap mask and who knows what flow rate. The mask let in room air on the sides and they had it strapped to my face. When I told them that my cluster was getting worse they moved the mask from my face and put it over my ear, I guess so I could get more room air? Well I broke the mask off and that was the end of my O2 until I found this site. I read all about the ways others here use it and now have the correct setup and mask. I found it was harder for me to get a oxygen company to deliver it to my house then it was for a doctor to give me a script for it. After a bunch of weeks calling and driving to O2 distributors and yelling and fighting with them I finally have a company that will deliver tanks to me house the next day. I do not use insurance for it because it would end up being about twice the price so I just pay for it out of pocket. Getting off the triptans was a long hard painful weekend but it was well worth it. I went from taking 3-4 shots and or pills to maybe one a month if I am getting hit bad for several days. I just know in the back of my mind that I am better off without them in the long run. I am not saying never take a triptan for a abortive because I have been crushed for 3 hours with a kip 10 before and know how that feels, I am just saying the O2 has aborted just as fast as a injectable and faster then the many pills I have taken.
  12. 3 points
    15_yrs_CH

    Thank you for sharing

    I’ve been dealing with CH for 19 years now and really just wanted to say Thank You to everyone who makes this website possible. Those of us who suffer from cluster headaches can go to some pretty dark places from time to time and this is the primary source from which I have acquired knowledge, leveraged experiences, and gained hope and determination to persevere to the end of the cycle. The regular contributors (Batch, CH Father, MoxieGirl, Psiloscribe, and numerous others) have made a difference in my life and, i’m sure, the lives of many more just like me. This is where I learned about high flow rate 02 with a demand valve, immediate release verapamil, RC seeds, Melatonin, d3 regimen, splitting immitrex, and 5-hour energy as an abortive. These are life savers! Just as important - the knowledge that we are not alone, that others have suffered and coped and managed to grind through, and that the pain will eventually come to an end. Thanks again!
  13. 3 points
    jon019

    Thank you for sharing

    *blushes* No need Moxie....another delightful post....and thanks to 15 yrs ch for the shout out... We do what we can. Besides, what's the point of going through all this pain if one can't help someone else avoid a little of it. Ummm...like WOW...what's the point indeed?! There's a whole lot more of WE(s) than Me(s)... Likewise though, I wouldn't be here today if it wasn't for this forum and the people here. For "me" it started with National Migraine Foundation (now National Headache Foundation)...who almost always did a section on CH in their newsletters (which info was publically unavailable anywhere else)...and introduced me to O2 in 1985! They really don't get the acknowledgement they deserve. Then a guy named DJ started clusterheadaches.com....which I KNOW has saved lives and sanity!!! (To quote him: "Adversity does not create character...it REVEALS it".) Then, of course, there is this little party bus right here....and ya don't need a ticket to ride! I remain a blessed, lucky....and grateful man. "Seek and ye shall find" Best Jon MG
  14. 3 points
    MoxieGirl

    Thank you for sharing

    *blushes* We do what we can. Besides, what's the point of going through all this pain if one can't help someone else avoid a little of it. Likewise though, I wouldn't be here today if it wasn't for this forum and the people here. MG
  15. 3 points
    Ammo

    New guy

    Hey guys just an update, been on Benadryl for 3 days and been pain free for 2 days still have moderate shadows but have avoided the o2. So far so good....
  16. 3 points
    spiny

    4 years and still going

    Welcome sontye! I see that CHF has given you a great start with suggestions. One I will add is that since you are nocturnal, as am I , sleeping in a recliner helps. Just grab some pillows and crank back the recliner till you are comfy. Keep your head above your heart. Will you still get hit? Maybe. Will it be as bad? Not likely - you wake sooner. Others will put pillows on a table and use that method. Yes, breathing exercises can also help. Especially if you are caught out in public. The main idea is to get rid of the NO2 in your lungs. So, exhale fully, like a breathing test with a crunch at end it possible. Then inhale deep and hold that for a bit. Up to even 30 seconds. Then big exhale and repeat. Then just breath deep in and out rhythmically for the duration of the pain or until you to to a safe place. Cold air does work best. If you go with energy shots, you can always have some in the car. Same with coffee. Works best if taken at the very beginning. I strongly suggest that you read up on the D3 Regimen and try it. Just healthy vitamins and it can really make a huge difference. Lower pain level, shorter hits, or complete remission. Not bad at all. I am the 'lady' (term used rather loosely) of the house too. My husband was determined to 'help' for the first year. That was rough. He finally understood that he was not able to help in any way except to get out of my way. Don't ask, don't offer, don't do anything that requires a response from me - it all makes the pain worse. Just make sure that there is O2 in my tank!!! I use welding O2 BTW. No, no, no says insurance. So, you go around and get the best abortive available at you local welding supply. Yes, it is safe. Yes, it is worrisome when you feel that you are letting your family down. But you are not! Look at it this way - You are appreciative that they can and do help out. They are glad to have something that they can do to help ease your suffering. It strengthens a lot of families when they work together with this mess. I am so happy to read that they are supportive!!! Some are not. There is no way for them to know our pain and I am glad they do not. Just be my support group. Sounds like a great little group at your house! ATB
  17. 3 points
    spiny

    Just got diagnosed

    Shadows are low levels of Ch or Ch like pain. They put you on edge usually because you feel like a hit is coming, sort of ' Hey, I'm still here!' Many times the hit does not materialize, just the nagging 'shadow' pain.
  18. 3 points
    dmlonghorn

    Having pain downplayed

    A text message I sent to a good friend of mine, someone I could trust: "I need someone to talk to about my CH situation. Someone not a doctor, someone not a family member, just a friend. Unfortunately, I'm struggling mentally with this and just need to talk to someone that knows me at the friend level. Don't worry, I'm not going to break down and dole out a sob story. I don't want sympathy or pity, just a conversation." Just sending that message felt like a ton of bricks being lifted from my shoulders. Then the conversation also went really well, another ton lifted from my shoulders. From there, my buddy knew the facts, he knew what rumors could be dispelled and had accurate information to give out. Over the past week, amongst our mutual friends, he has been casually bringing it up, talking about how serious it is, sort of like a personal grass roots movement. My friends get it, they understand now, thanks to him. Best of luck to you.
  19. 3 points
    spiny

    Just got diagnosed

    Hey Bilal! I only have one add to put out there. It sounds like you are on Extended Release Verap - taken twice a day. The older short acting variety has been shown to provide better relief. You can tailor the taking to when you normally get 'hit'. You just want to keep them spaced out. Say 4 hours between. I used to take mine at noon, 5pm, and 9pm. Most of my hits are nocturnal, so I took most of my preventative later in the day. The D3 Regimen is very effective for many and not expensive. Just over the counter vitamins. You would likely see some results in about two weeks. It is really good at reducing the severity of hits and slowing ramp up time. Some patients have gone pain free with just these vitamins.
  20. 3 points
    Ricardo

    Anesthesia

    Thanks Spiny! I'm glad the procedure went well for you. I agree that a pre-op talk stressing the importance of the protocol you need can make all the difference in your experience. In terms of anesthesia, if you need it again Propanolol might be worth inquiring about. I have heard more than one buster claim that it had been helpful for them and the Chicago Headache Clinic considers it as "occasionally helpful for preventing Cluster Headache. (there have actually been reports of it preventing clusters since 1972 but for some reason it is never mentioned) If you need anesthesia again it might be a better option than some of the other anesthesia drugs. In regard to nitrous oxide, Quite a while ago I got pretty sick of all my dental work. It is always complete torture. It doesn't matter if it is a cleaning, a cavity or a root canal--they all leave me in excruciating pain regardless of novicaine and then I always leave with either a cluster or a migraine. So I started looking into nitrous oxide and had the same thought that Jon had, that it would probably be a trigger. I was surprised to find that the only info I could find on nitrous and clusters was a report on Erowid by a high school kid that had clusters. Truthfully it gave me a lump in my throat, thinking about high schoolers having to deal with chronic clusters. That is just wrong and eggs me on, we need to change this situation. It is simply unacceptable. So the report I found by this high schooler said that he had chronic clusters and managed them with nitrous oxide. (https://erowid.org/experiences/exp.php?ID=23397) He said that he would bringe a small nitrous "cracker" (device used to open a small nitrous cartridge) and any time he felt a hit coming on he went to the rest room and took some nitrous, claiming it worked every time. After looking into it I realized that his claim was not that weird. Nitrous is in the same class of drugs as another cluster drug, ketamine. Both drugs are NMDA receptor antagonists, both lower nitric oxide levels, both lower TNF levels and both are known to be very effective for pain. Hell, in some countries they give nitrous oxide to women for childbirth. So I was at least convinced that it was not going to trigger an attack for me and I made the appointment with a new dentist. I had 2 or 3 times where I went in and everything worked great. Not long after the shot of novicaine they would put the nitrous mask on and I would experience very little pain and no cluster or migraine afterwords. Then one day the hygenist goes to give me a shot of novicaine (before I get any nitrous) and puts the needle straight into a nerve, I'm guessing she hit my trigeminal. Holy shit instant kip 9 cluster! I pushed the lady off of me and jumped up looking for my bag that had my sumatriptan shots. I found it and was fumbling through it, blurring vision, eye tearing, red hot poker love smashing through my eyeball when the hygenist walked in with the nitrous. I gave up on the sumatriptan, and told them to put me on full blast. Luckily they complied. Truthfully they looked so damn scared and in shock of the situation I think that I think they would have done whatever I asked at that point. Within seconds of the nitrous the pain ramped down. A full minute or two and the pain was 100% gone for the rest of the day. Since then I have made them put the mask on before they do anything to me. They always try to wait on it but I give them the look and state "NO ONE touches me until you put the mask on." Thanks again for sharing Spiny -Ricardo
  21. 3 points
    jon019

    Having pain downplayed

    Not much to add but just to say re the feeling of left out of social activities. I do get that... but at one time in my life...pre-ch...the best parties were when I stayed sober (on purpose)...and watched the hilarity ensue. Made great friends with another person doing same.....we had more fun than the 'inebriated" methinks....I'd smile and nod when cajoled....and then keep giggling..... Re "hiding" a hit. It IS embarrassing, it is PAINFULLY gut wrenching when you know people watching you (especially loved ones) are DAMN scared. Several times I had to adamantly refuse 911 "help" when I was in no condition to argue (mostly avoided by hiding GOOD). And maybe this is a guy thing...but for ME...it was the COMPLETE helplessness of TOTAL VULNERABILITY. I remember one guy at work...who I love like a brother...but who for some reason enjoyed hunting me down and surprising me while I rode out a "private" hit. He burned up some karma there....................................... Best Jon
  22. 3 points
    BostonHeadacheDoc

    Gammacore/electrocore

    I contacted the company that makes the gammaCore device. I am satisfied that the signal is an electrical one, and not just a sound. spinebob I am happy to continue this conversation as needed, you may have more information. I appreciate your skepticism, but in this case it does not appear to be true. I am not an engineer! Regards, Brian E McGeeney, MD, MPH, MBA BostonHeadacheDoc
  23. 3 points
    spiny

    PLEASE help me, I need ideas!

    Welcome! Sorry you need to be here though. Nocturnal hits suck. In my opinion because you don't realize they are there until they jack up a good bit. As a 'nocturnal' myself, I will address that. Grab some caffeine as you head for the O2 and down it fast. Cold seems to work best. I use iced coffee or V8 Energy. The shots make me vomit. O2 will kill a hit, but not prevent the next one coming behind it. If you are getting hit every two hours at night, you will kill the first, fall asleep, get the next one on time. Your O2 will not prevent the next one. Are you hyperventilating on the O2? Do that till the pain recedes. Then stay on for another 5 minutes with a normal breathing rate and the O2 turned down to support that. Many people think that if they get another hit in an hour or two, the O2 is not working. Well, it is. It is an abortive, not a preventative. So, the next hit is going to come! Sleep in a recliner partially reclined but with your head above your heart. It helps a lot and you will wake sooner if you get another hit. Pile pillows around until you are comfy and secure. Start hyperventilating when you first get up. It really helps even with just plain air. And you will use less O2 when you get there. Eat regular if possible and schedule your sleep. Naps can bring on a hit and having screwy times to go to bed is just aggravating the dragon. Set a time to sleep and a time to get up. Stick to it. Really tough with night time hits, but very helpful. You do not mention a preventative, are you on one? Verapamil perhaps? That is normally the best one to take and the first one you should try. It is a cheap med to take. With CH, you likely will need a pretty high dose. Likely he will start you with 240 a day and step up from there. Insist on the Short Acting vs the Extended Release- it works much better for us. And you can tailor when you take your pills based on when you get your hits. At three times a day, I took my first one at noon, then dinner, then late at bedtime. Just keep them at least 4 hours apart. Unless you have other health issues that get in the way or have low blood pressure, you will up your dose till you get relief. If you get hit with no O2 around, then grab some caffeine while running really hot water in the tub. I get in and let it fill with water as hot as I can stand it. Often I have a full normal tub full by the time I get out. I just keep adding more hot as it cools off. ATB and I hope this helps a bit. Hugs!!!
  24. 2 points
    FunTimes

    Taurine! WOW!

    I use the 5hr energy drinks and keep them in the car, at work, at home and in my pocket. Small easy to carry around and they do the trick for me. I do not keep them cold and drink them at room temp. The first feeling I get I can sometimes drink one and push the cluster off totally. If you used 1/4th of your tank it sounds like you have a E size tank. I would ask for about 4 more of them and at least 2 M or M60 size tanks. My oxygen company is not the best at keeping track of how many tanks I have or they just dont care so if I order 4 tanks and only have 3 to return they still give me the 4 tanks. this is a good way to build up the stock pile you will need when the shit hits the fan!
  25. 2 points
    Jazz

    For the smart folks

    All I know as a CHer for 25 years is that we are all abnormally smart in certain areas especially something to do with our artistic, cognitive, speech or visionary perspectives. But, we are all relatively depressed individuals, say like Van Gogh. We usually live longer lives if not killed off by prescribed medications than normal human beings. Thus GH is bloody good in us! We have a tolerance for very high dosage of pain, medications, drugs and alcohol. We do not age as quickly as our counterparts and have extremely inquisitive minds plus strong personalities. We are the future generation, I believe and one of every of our kids or their offspring will evolve further. Only my opinion. Jazz

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