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2018 Clusterbusters Patient Conference Denver
Joyisnow77 replied to eileenbunny's topic in Advocacy, Events and Conferences
Would be nice indeed to know any new scientific informations that was communicated over there... -
Take 10 of the Super D 1000 IU vitamin D3 capsules a day...
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JF66 joined the community
- Last week
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2018 Clusterbusters Patient Conference Denver
CHChris replied to eileenbunny's topic in Advocacy, Events and Conferences
I did not take many pics. This was my first conference, it won't be my last. Besides getting to meet and hang out with lots of very nice people, I came home armed with a lot of information. Literally from the moment I arrived until the time I left I was busy gathering information, sharing stories, and fellowshipping with a great group of people. Everyone was helpful, and I came away months worth of information to process. I had never met another cluster headache sufferer before, so the conference was especially eye-opening for me. Racer1_NC taught me how to use oxygen, which I was able to put into practice the next day. I had never properly used oxygen before, and it makes a world of difference. Thank you very much for your help Before I went to the conference I had read that this condition had altered people's lives. I know it has changed mine. But getting to talk to people who understand what you are going through is absolutely priceless. Being able to relate to complete strangers in ways that I can't with my closest family members is an odd feeling, yet was completely exhilarating. I ate every meal as fast as I could, sometimes rudely talking with my mouth full. I stayed up way later than I normally would, talking and hanging out with people I had never met. The presentations were very informative, and I came home with a lot of "action items." For example: find a new neuro that will actually prescribe oxygen, because it is the best abortive treatment I have found. I have a lot of new things to try, and I am emboldened by the experiences others shared with me. As it turns out, I'm not so weird after all, and that is empowering. Also, I saw a lot of people drinking alcohol, which is a big trigger for me. As it turns out, it is for a lot of people, but they are beating the beast and can enjoy there lives. Next year, I want that to be me. -
It may be easier if you could have some one from back home buy them and ship them. D3 is pretty common in the states, may be France (I think that’s where you said you were from). Most importantly you can’t give up. I know this shit sucks, but you will get through it. Have you ever tried a big tapered dose of steroids? It works for some people. There is also an occipital nerve block that helped me a lot could be easy to find some one that could do it. An SPG nerve block also helps and requires no needles. They stick long qtips in you’re nose and drip lidocaine jelly down them. There is always something to try but I draw the line at putting things in my brain. There is always MM, LSA, LSD...
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Dont give up that fast. If you can get the D3 at any level you will just need to take a few more pills. I was taking 10 of them at 5000 iu each. if you need to order a lower dose then that is what you will need to do. It will pay off in the long run.
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What i found on Amazon didn't ship to Japan, specially the D3 with high IU recommended by Batch. I'll try again, but i'm fed up with this today. Thanks again
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You can order them off of Amazon.com I am not aware of any restrictions on them being sent to Japan
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Yes i have always some with me, and drink about 2/day or night when i feel an attack coming. It helps sometimes ! Tried 3 drugstores/pharmacy, couldn't find D3 (only Super D 1000iu) nor the missing co-factors. Any suggestions ?! Maybe some japanese people here trying the anti-inflammatory regimen... ここで日本人いますか？？？ Yann
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mdiamond joined the community
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I think that you have already done the most appropriate thing - find a new Neuro! I just read the Mayo Clinics' definition of Occipital Neuralgia. I don't think that your symptoms are a match for the diagnosis you received. Some Neuro's know too little about headaches. That is why they have headache specialists in Neurology. Harder to find, but much more informed. When I first began my adventure with CH, my hits lasted 20 minutes. Over time they increased intensity and duration and today last 2.25 hours. I am ECH. My cycles are pretty regular. They begin with one hit per night and ramp up to 4/night. So, with one hit at night for a couple of days, I pretty much know that I am going into cycle. Or if i drink a beer an get a hit, I most certainly am back in cycle.
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Have you tried energy drinks yet? Most people find they work great to soften attacks. I usually slam half a can of monster or redbull at the first sign of an attack. It seems the oxygen works a lot better if I do that just before getting on the O2. Also, I've never had a hard time falling back asleep at night either (only half an energy drink though). When the post hit exhaustion kicks in I'm right asleep after the attack. PFW, J
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dmlonghorn, Data shows there are less people with CH the closer to the equator we live. As far as episodic cycles. I think that's a complete mystery. I was episodic a long time ago and cycles would start at most anytime. Sometimes they'd skip a year, sometimes I'd have 2 in a year. I think its most common for episodics to only get one cycle a year though. PFW, J
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I'll try another drugstore today to find the missing things. Thanks for the link about D3-50000IU but they don't ship to Japan, neither other brands... So tired !!!
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Thanks for your advices. Got 3 attacks this night... Fortunately, i have 2 free days, so i went to hospital with the mask i usually use at home, but the flow seemed very low although it was written 15l/mn and it was the max they could do hère ! Then i went to a drugstore, i could find fish oil (epa-dha 241,2mg), multiple vitamin&minerals, calcium (500mg) + magnesium (250mg), zinc, but no vitamine K, no boron, and no B50. I could find only "super D" (1000 IU). Should i begin and take 10 pills of it, or should i wait to order the missing things by internet ???
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Hoping this is random, but I just got hit last night and the September equinox is just a few days away. Crap.
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JoeyG joined the community
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New with questions, and possibly misdiagnosed
ThatHurtsMyHead replied to NicoleWH's topic in General Board
Ok, the condition I was trying to think of just popped in.. ha ha.. Chronic paroxysmal hemicrania - It's almost exactly like CH, but affects women more than men (supposedly anyway). It also has attack duration from a few to 30 minutes. One BIG difference between CH and CPH, is it us usually treatable with indomethacin. Indomethacin doesn't work on CH, so it's a good test doctors use to distinguish which condition a patient has. Cheers, J -
New with questions, and possibly misdiagnosed
ThatHurtsMyHead replied to NicoleWH's topic in General Board
Nicole, I'm certainly no doctor so take any info I might give as just a vague opinion. The location and description of your attacks sound very much like CH accept for one aspect. CH attacks normally last from 1 to 3 hours. I think you posted yours last from a few to 20 minutes. There are several other head conditions that are very similar to CH and in the same family (trigeminal autonomic cephalalgia), but have shorter duration of attack pain. SUNCT is the first one that comes to mind that has shorter duration. They are normally 1 to 6 minutes and have similar treatment as CH. There are a few others, that actually have better treatment options than CH (though sorry, my memory is bad sometimes and I don't recall the names off the top of my head). Try researching trigeminal autonomic cephalalgia, as that's the primary title for most flavors of CH type attacks. PFW, J -
Hi kendrra..welcome to the family! Over the years MJ has gone from a "oh no never" to lately some folks reporting it helping....in various forms. I thinks it's a combo of the differences between folks who have the same damn thing NOT responding to the same treatment....and the decided lack of studies re cannabis. It just aint all the same stuff. I think the only way you are going to be able to tell is exactly as you described...experiment. And then please let us know......sometimes clusterville is all we got...……. Best Jon
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Jarod joined the community
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2018 Clusterbusters Patient Conference Denver
ClusterHeadSurvivor replied to eileenbunny's topic in Advocacy, Events and Conferences
well i guess no one has nothing to say or pics or stories to share....oh well. take care everyone. -
Tine68 joined the community
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Hi everyone, I'm new to the site aside from some light browsing through the last 10 years. I know there's been many discussions about the benefits or non benefits of thc and cbd, but i haven't been able to find one about using specific strains to abort cluster headaches (please point me to it!) Anyways, since i live in California i've recently begun experimenting with different cannabis strains during my headaches. Long story short: i noticed that one strain (Grandaddy Purple) is actually able to stop my headaches almost immediately. I simply smoke a normal dose as soon as i feel one starting and as soon as the high fully hits (there can be a slight delay) the headache will either disappear or (if i get it early/ fast enough) it won't even get started at all. If i smoke during an ongoing headache it doesn't exactly kill it fast, but will definitely bring that headache to an end faster than if i let it go unmedicated. I have used psilocybin with success in the past to avoid a cycle, but this is the first "natural" product i've used to actually stop a headache attack. It's hard for me to even believe how well it works. I switched recently from episodic to chronic this year after a car accident but with enough GDP im able to skip through my daily headaches and live a relatively headache free life. I will say, though, that neither this strain nor any others stop the migraines i get, go figure. I have tried to use a concentrate cartridge of the GDP strain but it was not nearly as effective as when its smoked. It acted more like any other strain would- slightly lowered pain level. So I'm no expert, but i know i've found many a suggestion in these forums that's brought me relief and comfort, so hopefully this can help someone. I'd love to know how one particular cannabis strain could possibly contain the magical ingredient to stop my monster when another strain with minor differences would have no effect? And why cannabis at all? Would love to hear your thoughts- and suggestions! Think i should experiment with other strains or smoking methods? Heck im curious myself. Let me know, maybe we'll learn something together. Thanks, Kendrra And please Find me on instagram- I'm trying to connect more to cluster busters on social media, it's lonely out there guys @streetratdraws
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kendrrat joined the community
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2018 Clusterbusters Patient Conference Denver
Racer1_NC replied to eileenbunny's topic in Advocacy, Events and Conferences
It was good to see everyone. I no long take pics at the gatherings as I used to. I'm sure there are those that do and I hope some of them get posted up here. -
Hi all, First off I'd like to start with apologizing for anyone that I'm offending with taking guesses at self-diagnosing myself. But I'm looking for some insight and opinions from everyone related. I'll start with my questions, and follow up with my story below (it's long!) 1) How did your first CH come about? For those with episodic CH, do you have any warning signs or symptoms that happen when you're about to come off of remission? And if you do, how long or quick are those warning signs before they hit? ~~STORY~~ Last year, in March 2017, 5 days after I got married - I went to urgent care and the E.R. for sudden dizziness and slight numbness in my arm. Blood work and tests showed everything was in the clear and I was okay. From that day onto repetitive days over the course of a month or so I had abnormal dizzy spells along with random spouts of slight numbness to other odd symptoms. These symptoms made me more stressed than previous stress I had already had and I constantly felt uneasy thinking something serious was wrong with me (beginning of anxiety which I never before so was unaware of the feelings attached to anxiety). Fast forward to May/June 2017 I had my first panic attack with choking sensation which led me to the E.R. because my husband nor I have ever seen or felt myself in that case of before. They put a camera down my throat found nothing and then put an IV in me with Ativan to relax me then sent me home with a few Ativan pills and pain killers (for constant neck pain) and officially diagnosed me with anxiety. Later that night my husband and I took it easy after the eventful scare and put on a movie, I passed out on the couch with a pain killer that I took. Waking to go to bed after passing out on the couch, I woke up with the most severe head pain I've ever experienced! I couldn't do anything since I had just taken a pain killer so after holding my head in pain I let it pass and went to bed. Following up after that night, I started getting the most unbearable headaches I couldn't have ever imagined before having them. Half of my head (left side) would feel like it was about to explode and during so I would have excruciating pain behind the eye on that same side (left). As I recall, this pain would last anywhere between a couple minutes to 20 minutes. It was hard to properly time since they felt longer. I wouldn't be able to sit still through it calmly and would sometimes hold my head while sitting down along with moaning and/or crying over the pain at the same time. After this 'attack' like feeling was over my left eye that was in pain would be all watery like it was crying way more than the other(not droopy though). I would also have a little bit of an instant runny nose from that side of my faces nostril. I would get these 'attacks' once-several times a day unexpectedly and they would take over my life. I spent time in between not wanting to leave my house because I was either too sensitive to the sunlight (and I love being outside and the sunlight) or because my fear/anxiety paralyzed me in a way to not partake in anything normal me would want to do. I was even on a break/disability from work because I was also getting my tonsils out during the time period. (which was another whole story and level of pain which was still more tolerable than these 'head attacks'). I of course would look everything up on the internet which led me to diagnose myself of having cluster headaches. Just like a zodiac sign and having anxiety along with this every symptom felt like it matched me to diagnose myself as that. Soon I would finally have a long awaited appt. to see a neurologist. (July 2017) She dismissed the idea of cluster headaches immediately without any further thought and said that CH is different and I don't have that and went straight to diagnose me of having occipital neuralgia along with TMJ. She said that the headaches I was getting were 'flare-ups' from the Occipital Neuralgia. She also prescribed me a low dosage of Nortriptyline (anti-depressant) to slightly increase throughout time for my nerves to 'calm down' and help alleviate the pain. I never increased it by much and stuck to the lower dosage because I dislike taking medication unless I really need it. Around being 'diagnosed' with Occiptial Neuralgia and reading up about it, it gave me tons of relief anxiety wise and shedded off a lot of fear for other things. Also at the end of Aug 2017 I had quit one of two jobs I had that brought me TONS of stress. A job that I was told by many of my friends and my husband that I should let go and that the cons over-weighed the pros significantly. I should also add that before these 'attacks' I already had severe neck pain that came throughout the day all days for the last couple years or so that I could remember. A chiropractor learned my history and linked it to a minor car accident I had when I was 16 or 'growing pains' or being a gymnast as a kid/teen. There were MRI tests of my head and neck that showed no signs of anything in my head other than a small pineal cyst which they said is not likely to be causing any symptoms nor is a sign of danger. The cervical MRI showed mild degenerative narrowing and 'dynamic anterolisthesis of C2 on C3'. With all of that info I was also prescribed to a few months (Aug 2017-October 2017) of PT which really brought attention how poor my posture is and where I carry my stress (neck). So between quitting my job, doing PT, taking the Nortriptyline, and letting go of most of my anxiety and fears through healthy and non-intense exercise and stretches and similar meditative ways, those ON 'flare-ups' dissipated immensely to where any flare up this past year feels more like a quicker dull pain in my neck and back of the head (now right side) that was more manageable rather than what I would compare to the previous learned Cluster Headache. I also can see and read up what the very similar symptoms that Occiptial Neuralgia flare ups and Cluster Headaches share. So along with all of this information, I may have improved lots mentally, emotionally, and physically. But lately (this past 2 weeks) I've been having familiar to last years head pain back on the left side along the back in addition to around the left eye like my muscles around the eye have been overworked somehow along with jaw and cheekbone pain on that left side. It feels like what you guys would call 'shadow pain', not as bad as the actual hit. This has put me in the thought of Cluster Headaches again and makes me wonder if I was/am a contender for them and that I just went on remission from them and if the doctor mis-diagnosed me of not having them. One of my theories was that my anxiety and symptoms of pain snowball-ed into one another to make things flare-up just to mock Cluster Headaches. But I also do find when comparing the two that the more leaking eye after an episode is not common in ON and only in CH. Another thing to add is that besides that first 'head attack' I got, I never had any wake up me up in my sleep - That also could be the majority of the time I had these I had just had my tonsils out and was on tons of percocet during a 3 week duration and was so wired and sleep deprived as it was that I couldn't or could barely get any REM sleep. Sorry for the very long essay, I just wanted to fit every detail in and lately I've been starting to fear that I was misdiagnosed and that the CH will come back and I don't have any CH medication, oxygen, etc. I have made an appt weeks ago that's not for another week from today for a second opinion with a different neuro. Thanks for reading all of this!
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NicoleWH joined the community
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2018 Clusterbusters Patient Conference Denver
FunTimes replied to eileenbunny's topic in Advocacy, Events and Conferences
I also just returned from the conference. It was nice to see others like myself, I think it will take a few days to soak up all the information. -
Adub joined the community
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Tracy, ++ spiny's post. Our alternative meds are actually much safer than society has told us. To make it easy it's best to have a good Set and Setting. Have a friend, someone you feel comfortable with hang out with you. It'll help make the experience much more relaxing. Please post questions in the "Theory and Implementation" folder. There's lots of very knowledgeable people around that can help answer most any question you might have. Cheers, J
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thanks!
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D3 regimen and busting (read the numbered files in the ClusterBuster Files section to learn more about busting) are the only ways I know to "get them go away" (end your cycle) without a visit to a neuro for a prescription (such as verapamil and/or prednisone, which might or might not work to end your cycle). Of course, you can get individual attacks to go away with oxygen, sumatriptan, and other things that you might get from a neuro. And I suppose you might step up from straight coffee to energy shots (such as 5-Hour Energy) to maybe get quicker aborts.
