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clusterb last won the day on October 14 2017

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  1. Great info, thank you for the post.
  2. Mit, I have been doing alot of research due to my CHs returning and came across Horners Syndrome. It talks about droopy eye and has been associated with cluster head aches in other medical articles please see below. if this helps let me know and I will pass along more info, I have a knack at data mining. Hope this helps CB Horner syndrome Horner syndrome is a rare condition that affects the nerves to the eye and face. Causes Horner syndrome can be caused by any interruption in a set of nerve fibers that start in the part of the brain called the hypothalamus and travel to the face and eyes. These nerve fibers are involved with sweating, the pupils in your eyes, and some of the muscles around your eyes. Damage of the nerve fibers can result from:  Injury to the carotid artery, one of the main arteries to the brain  Injury to nerves at the base of the neck called the brachial plexus  Migraine or cluster headaches  Stroke, tumor, or other damage to a part of the brain called the brainstem  Tumor in the top of the lung  Injections or surgery done to interrupt the nerve fibers and relieve pain (sympathectomy) In rare cases, Horner syndrome is present at birth. The condition may occur with a lack of color (pigmentation) of the iris (colored part of the eye). Symptoms Symptoms of Horner syndrome may include:  Decreased sweating on the affected side of the face  Drooping eyelid (ptosis)  Sinking of the eyeball into the face  Small (constricted) pupil (the black part in the center of the eye) There may also be other symptoms, depending on the disorder that is causing the nerve damage. Exams and Tests The health care provider will perform a physical exam and ask about the symptoms. An eye exam may show:  Changes in how the pupil opens or closes  Eyelid drooping  Red eye Depending on the suspected cause, tests may be done, such as:  Blood tests  Blood vessel tests of the head (angiogram)  Chest x-ray or chest CT scan  MRI or CT scan of the brain  Spinal tap (lumbar puncture) You may need to be referred to a doctor who specializes in vision problems related to the nervous system (neuro-ophthalmologist). Treatment Treatment depends on the cause of the problem. There is no treatment for Horner syndrome itself. The provider can tell you more. Outlook (Prognosis) The outcome depends on whether treatment of the cause is successful. Possible Complications There are no direct complications of Horner syndrome itself. But, there may be complications from the disease that caused Horner syndrome or from its treatment. When to Contact a Medical Professional Call your provider if you have symptoms of Horner syndrome. Alternative Names Oculosympathetic paresis References Baloh RW, Jen JC. Neuro-ophthalmology. In: Goldman L, Schafer AI, eds. Goldman's Cecil Medicine. 25th ed. Philadelphia, PA: Elsevier Saunders; 2016:chap 424. Thurtell MJ, Rucker JC. Pupillary and eyelid abnormalities. In: Daroff RB, Jankovic J, Mazziotta JC, Pomeroy SL, eds. Bradley's Neurology in Clinical Practice. 7th ed. Philadelphia, PA: Elsevier; 2016:chap 18. Review Date 5/30/2016 Updated by: Amit M. Shelat, DO, FACP, Attending Neurologist and Assistant Profess
  3. Thanks for all the shares on this thread, I have definitely learned to find my own technique (it only took 19 years..lol). If I hyperventilate and hold the big O2 hit for as long as I can, I have had success in this cycle dropping my abort times down drastically. I am writing this now at a little over 84 hours of CH free time, moved into no shadow living for now. It has been really a hard cycle as I had a 6 year break from the beast. Kept a journal this time which really helped to see the amounts and times and severity. 39 attacks in 21 days and 65 in 54 day period. I am fingers crossed I will have a good break and stay episodic, and have not moved chronic ( my worry is I am days away from my 40th bday, I have read about people changing at that point in their life) I have not busted yet, but plan on being prepared for the future. Thanks again to all of you fellow clusterheads, hopefully I will get to meet a few of you at the conference this year. CB I also up graded to the M tank, very nice for sure
  4. Just signed up last night, my wife and I are looking forward to this very much....Cluster heads Unite!!!
  5. UPDATE, That was PFM Pure fucking Magic.... to think I have been using O2 wrong for like 19 years. That was amazing just zapped a CH in under 5 min. I feel ashamed I didn't read on this site before. Thank you batch and thank all of you for this info Sorry for all these posts, hope I am not clogging up the board. Also tried the 5 hour energy and i guess that helped...thank you Jon and CHF
  6. Man, I have not ever tried this method. I must try it, it is just my luck if I have been doing it wrong for this long. Thank you
  7. Quick question: I have wondered this for awhile, and I am sure this has been covered before but at what point are you just wasting O2. I awoke this morning in a battle with a K8 and hit the O2 hard, took about 30-35 min for the pain to get manageable, then at 40 min it was down to nothing, but I didn't feel that magic moment that tells me it is completely over. I believe all the O2 users know what I mean, if not I feel this release that tells me the beast has slipped away, and then I continue for 5 minutes. Today it took like 20 min no feel of release but pain was not there so I stopped the O2, and feeling like a mild shadow. I stopped the O2 in fear I was wasting my precious supply ( and I have a good supply of O2). So simply put, what are peoples experience with staying on the O2 and stopping due to fear of wasting their supply? Thanks in advance for any and all info CB
  8. Spiny, Thank you much for the info awoke this morning into a battle with a K8, have not tried the caffien yet, need to put some by the bed side. My doc is a gp and after all this knowledge that I have found here, I need to go back in to the doc and drop some knowledge to her, and figure out my verapamil and get some blood work done. Thanks for all the info CB
  9. Urs, Thank you for the input, that is good info. I am reading alot more than I ever have since my CHs have returned. How much CBD have you used when you tried it, and was it smoked or ingested? I have read about people using large amounts of CBD oil in pill form and having good results for seizures and other issues, and wondered if anyone had ever tried that for CHs. I am unable to try cannabis due to employment issues, but CBD does not hit on drug tests from what I have read. Very interesting about the pure THC comment, if others can use that for help with sleep without getting CHs that would be very helpful. Thanks again for the response
  10. I agree with lots of people posting that pain is relative to the person experiencing it. I have had several K10s in my 19 years of having these CHs. I have never had any pain in my life come close, even a pretty bad motor cycle accident. I have been given Morphine during a massive attack and still felt the CH. I would not pray this shit on anyone. When I first started getting mine I was in the Army and attempted to push through alot of them, that will work up to a K8, but after that I am a useless zombie spitting saliva yelling at people while I pace around like a mad man. Thank God O2 helps, I have been stuck without it, and been walking around outside at 3am in the freezing cold in shorts questioning if life is worth living. I have never had a limb blown off, or been blown up. I do have a few friend s who have and most of them passed out or were in such shock they didn't feel any pain at the time of the incident. I am not sure if it is even a statement than can be proven, but I sure wish I would pass out when the K10s start rocking. I have read some really heart breaking posts from the CCs on here and thank God I am not at that point. Just my two cents Love this sight, very nice to read and realize I am not alone in this fight
  11. thanks for the link! Found a doc close to me, hopefully can get in soon
  12. Gents, Thank you, I have tried 5 hour energy before (not for an attack), gave me an upset stomach, and I thought it was because of all the Vitamin B. I will try this with some water to water it down this time. Does the caffeine abort the CH? I work in a lab and have have full strength caffeine, wonder if that would work, like caffeine pills. I am building a shopping list to go grab, had three mild ones today mainly in the morning. I have these weird ones that happen if I snooze a bit, very strange I wake up feeling fine, then take that last little 10 min snooze and wam CH, ever had that happen? Going to grab some melatonin and 5 hours at the store, and planning on uping my verapamil dose tonight. I am not sure what kind I get, just has always been Verapamil to me, I will need to investigate this. What are your gents thoughts on Triptans? I am kinda scared of using them unless really needed due to rebounds, how do you guys use yours if you have them? again thank you for the help, btw I am planning on attending the conference this year, I talked to a lady about a medical trial and she asked if I had ever met anyone who has CHs and I realized I never have, and how much of a shame that is. do you guys attend?
  13. CHF, Thank you for your response, I have the high flow setup with the cluster mask, just got the mask last month and love it. I tried the energy drink thing years ago, I slammed 3 red bulls at first sign of CH, and did not get any relief, just alot of energy and bloated, was out of O2 at the time so it kind of gave me a bad memory of trying. I have been thinking of trying it again with O2. Do CHrs have issues with higher doses of verapamil? I have always worried about the side affects, but worth giving it a shot to up the dose. I have never tried melatonin at night in cycle, I did try it before as a sleep aid it never quite worked for that. Most of my CHs occur at night, I will try this tonight at 9mg and scale up if needed. Thank you for your help ClusterB
  14. Hello all, First time posting, long time reader of posts. I recently just returned to the battle against the beast after a 6-year hiatus. It is a cruel trick the beast played on me, I actually thought I may have been cured, thought possibly I may never get a CH again ……long sigh, this is not how it works though apparently. Little bit of history on me, diagnosed in 98 (age 21) was episodic till 2003, went into chronic (felt chronic as I didn’t have any break for more than a month till about 06, then my episodes changed and did not follow their old pattern. (original time frame April/May-August/September then came and went with no schedule) 2009/2010 after realizing I was massively over using Triptans and prednisone, I stopped them cold (just me and my O2 for 2 weeks) and that is when my remission period began. Remission ended in Jan 17 and I have been in cluster since. Current meds: Verapamil 480mg 1xday, O2 for abortive, Frovatriptan sparingly due to rebounds, d3 10000 iu fish oil 3600 mg (need my PCP to start my blood draws to go full bore on this regime, doc told me it wasn’t a good idea, but after providing the regime paperwork I am going forward with this) I have tried multiple meds in the past, and had a horrible reaction to Nasal Imitrex, it seemed to feed the beast steroids, was one of the worst and longest lasting CHs ever experienced. (anyone else have this issue?) Meds tried: (probably spelled wrong on some of them) Fioranol, Fiorocet, Amerge, Imitrex, migrianol and multiple other triptans, lithium, Prozac ( a few other mood stabalizers)Capillary constrictors, lidocane up the nose ( neuro suggested that, nothing like a CH with a numb nose) Working to get my Vitamin M crop working going to try this when they are ready. (can someone with good knowledge of vitamin M PM me I have some questions) Questions: Is there a Leading Neurologist for CHs, if so where are they located? (I have had not great success with neuros as I usually know more about CHs than they do, hoping to get into a headache specialist soon) Has anyone ever had O2 stop working, and then work again? For long term sufferers, have you ever tried a med that didn’t work for you in the past (years later or after a long remission period) and found any success? With the legalizing of cannabis in the country is there any reliable studies of any of the cannaboids and or CBD? I have read about CHrs having no success and even causing attacks, but is this due to having to get unknown cannabis from the street and not actual dispensaries. I have been doing a lot of research on the 5HT receptors and psilocybin and the effect on CHs how many other geeks out there have been doing this and would like to share any medical papers. (I have info to also share) I have tried to get into medical trials, but since I have Migraines also, and do not know if I am currently episodic or chronic, I am disqualified. I have looked at the links on this page and clinicaltrials.gov, is there any other studies people know of? I am in it to win it now they have returned, when I was in remission I didn’t keep up with ClusterBusters or Clusterheadaches.com, but I would like to lend any help to anyone needing help and also get into any cause to find better treatment for CHs. Is there any need for volunteer work? I appreciate any and all information provided, I have been back on clusterheadaches.com reading and here reading. Thanks to all of you who provide such good info. ClusterB We are all unique in this condition and must struggle to not allow the beast to win!
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