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  2. jer

    anyone else entering fall cycle?

    Hey automator. I am a 43YO male suffering for about 15 years (episodic). I started journaling my attacks in 2016, recording all the details. I do not have any real consistency at all. I get them on both sides, but normally the left. And the timing and duration are all over the place as well. In 2016 I started the cycle in August and lasted a month. Then got another attack for the month of December. Then pain free until late February of 2018. That one was on the right side and lasted 6 weeks. Again pain free since then until this past Friday night when I started having very mild attacks before bed and as I awake. Now just waiting for the cycle to go full swing. I also start the cycles out mild and it gets worse from there. Typically about a week to 10 days. Before I started journaling I remember one year where I had a cycle both in the spring and fall. So, probably not some other type of migraine. Just a wacky cycle. Highly recommend journaling.
  3. Scott1973

    Nerve blocker

    Thank you for your info
  4. Pebblesthecorgi

    Nerve blocker

    nerve blocks are generally hit or miss assuming you have an experienced person placing them. Nerve block success is often operator dependent and even in the best of hands can get variable results. You are either dealing with a sphenoganglion block or an occipital block. Its worth a try but even if they are successful they have to be repeated. Implants are still a work in progress and have transient reports of success. The issue with implants (my opinion) is they require a surgical procedure and although the procedure is minimal it still leads to scarring and potential compounding of the problem. I believe there is one implant approved in Europe, I'm not sure of the application status in the US. As with all interventions you have numerators in search of denominators. I personally would be more inclined towards the CRGP injections (Amovig or Emgality) if confined to conventional therapy.
  5. Scott1973

    Nerve blocker

    Has anyone had any luck getting a nerve block done either one the injection things are. Or the implant
  6. Last week
  7. Brain on fire

    Thank you for your Service

    Bill Holley+. Like many his name didn't go on the Vietnam Memorial Wall but his service during the war/conflict/police action/military aide to South Vietnam killed him.
  8. devonrex

    Thank you for your Service

    Lest we forget. John McCrae, May 1915 In Flanders fields the poppies blowBetween the crosses, row on row, That mark our place; and in the sky The larks, still bravely singing, flyScarce heard amid the guns below.We are the Dead. Short days agoWe lived, felt dawn, saw sunset glow, Loved and were loved, and now we lie In Flanders fields.Take up our quarrel with the foe:To you from failing hands we throw The torch; be yours to hold it high. If ye break faith with us who dieWe shall not sleep, though poppies grow In Flanders fields.
  9. CHfather

    Ketamine nasal spray?

    Big', welcome to the forum. You might get some direct replies to your question, but you might also get a broader sense of experiences and opinions by typing ketamine into the search bar at the top right side of any page. Are you doing the D3 regimen that has helped hundreds in big ways? https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people Considered busting? (click on blue banner at the top of the page)
  10. Bigoji

    Ketamine nasal spray?

    I’m a 36 year veteran with episodic ch. I’m battling hard and there are so many more weapons to try now, but then its hard to comprehend how things work together or bring about more pain. Whats the scoop on this option? Thank you! Love and Light!
  11. FunTimes

    02 mask

    Here is the link to the one that most use. http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  12. yme

    Females and O2

    Thank you so much for the information CHfather. I'm on the vit D3 regimen now. Hoping it helps quick enough.
  13. yme

    anyone else entering fall cycle?

    I'm in the fall cycle. It's been 3weeks now. Last night was horrible!
  14. Brain on fire

    02 mask

    The Cluster O2 kit CHfather references in your topic titled 'CO2'. The link is included in the New Users-Read Here First blue banner. Edited for correction: The link is in Basic non-busting info in the ClusterBusters Files Section (pinned at the top).
  15. Scott1973

    02 mask

    What is the best mask in bag to use with oxygen
  16. Brain on fire

    Thank you for your Service

    and sacrifices. Apologies I'm a bit early, I have many to thank tomorrow.
  17. Brain on fire

    4 years chronic headache/facial pain. CH and ?

    A diagnosis (sometimes a temporary differential diagnosis) is required to prescribe. From what you shared, it sounds like 'the multiple neuros and results of imaging' failed to provide the info you need to make informed treatment decisions for yourself... If you believe that is true you may want to get medical records & imaging study results. Over the years many have learned we must advocate for ourselves. I am often shocked when people take meds with no clue what active diagnoses are in thier own medical records or what (specifically) the meds are prescribed to treat.
  18. RedHill

    4 years chronic headache/facial pain. CH and ?

    I did an indomethicin trial in 2017 to rule out a HC diagnosis. In 2018, I tried verapamil at a max of 480mg daily for about 3 months but it didn’t really effect the near constant pain. appreciate the Input.
  19. CHfather

    4 years chronic headache/facial pain. CH and ?

    Given your descriptions, you might consider looking at hemicrania continua (HC) as a possibility, which would involve finding out whether the drug Indomethacin takes the pain away. https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page It doesn't sound like you have used the standard CH abortives, oxygen and triptans. If you did try oxygen properly and/or triptans (Imitrex; sumatriptan; etc.) in a proper form (nasal spray or injection), and they didn't work, that would strongly support an HC diagnosis. Some people with CH have pretty constant pain in the form of "shadows," but I think that's pretty rare, even in people with chronic CH. That verapamil didn't address your pain doesn't say much either, unless you took it in strong-enough doses over a long-enough period of time. Prednisone usually at least stops CH pain for a while, but not always. So that med history doesn't really tell us much, but it does again lend itself toward at least checking into HC.
  20. Hey everyone, First time posting here. Have some questions, but want to give my background first: In Jan of 2016 I started getting the worst headaches I have ever had. I always had some bad headaches here and there growing up, but never too chronic and I never had to seek out any medical treatment. These headaches were something special. Always right sided, around my temple and eye and just absolutely debilitating. They started about once every 2 weeks, then once a week, then every day. The worst thing about it was there was a lingering pain between the headaches that just never went away. Cut to almost 4 years later and I still have pain almost every moment of everyday. In that time I have tried every class of medication for headaches, occipital blocks, SPG blocks (nasally), surgical removal of a pituitary adenoma as well as several holistic methods of treatment. I know this is a CH forum, so I will get to that point. While my pain was always constant and fluctuating after the initial attacks, I didn't have what could be considered a cluster period till around March 2018, when I had consistent severe attacks that fit all the CH criteria. It made me think that perhaps the initial onset of the pain was somehow CH related. I was prescribed verapmil and prednesone during that time, but they did nothing to end the cluster period. It eventually ended after about a month and I was back at my usual constant fluctuating pain levels. About 3 weeks ago, I started having the same CH type of headaches again. Always around the same time of day and I cant seem to get any relief. What my real question relates to is the constant headache/facial pain I feel between these cluster periods. Does anyone have constant unremitting pain between cycles? Can this be explained by a diagnosis of CH? Do I have overlapping disorders? I have seen multiple neuros and have had imaging done but I have never gotten a clear diagnosis around any of this. Additionally, I can sporadically get headaches of a differing variety that throb intensely when I change positions (almost orthostatic) that don't respond to any medication. I suppose I'm cutting out alot here because I have a pretty extensive medical history, but for TLDR, has anyone had, or heard of, a constant fluctuating headache/facial pain between cycles being solely attributed to a CH diagnosis?
  21. Brain on fire

    Kings of pain

    Agree with @jon019 I'll add... As the Kings,Queens, Princes & Princesses of pain, we don't need a reality show.
  22. Pebblesthecorgi

    Cluster headaches related to sinus infections?

    I am glad you are no longer having pain. Though it is unlikely a mucus retention cyst was causing cluster headaches anything is possible. One could develop theories on why cyst removal may be helpful. Another possible consideration is you may be enjoying a “side effect” of the anesthetic agent used for surgery. You might want to get a copy of the anesthesia record to see if propofol, steroids or ketamine were used. Any combination of these agents has the potential to offer relief for cluster headaches.
  23. Terry123

    anyone else entering fall cycle?

    I have been in the hospital multiple times in the last 10 years with Cluster Headaches and had injections for nerve pain giving to me in my face. I also had sinus issues going on so I had Turbinate surgery, after surger I started having cluster headaches again so i asked to have a Scan done and found that I a mucus retention cyst in my sinus. I was told that it doesn't cause headach but I insist to have it removed and I never had an episode since. Please insist to have your ENT or Neurologist do a CT scan and if there is any mucus retention cyst let them remove it. Hope this helps!
  24. Terry123

    anyone else entering fall cycle?

    I have been in the hospital multiple times in the last 10 years with Cluster Headaches and had injections for nerve pain giving to me in my face. I also had sinus issues going on so I had Turbinate surgery, after surger I started having cluster headaches again so i asked to have a Scan done and found that I a mucus retention cyst in my sinus. I was told that it doesn't cause headach but I insist to have it removed and I never had an episode since. Please insist to have your ENT or Neurologist do a CT scan and if there is any mucus retention cyst let them remove it. Hope this helps!
  25. Terry123

    Cluster headaches related to sinus infections?

    I have been in the hospital multiple times in the last 10 years with Cluster Headaches and had injections for nerve pain giving to me in my face. I also had sinus issues going on so I had Turbinate surgery, after surger I started having cluster headaches again so i asked to have a Scan done and found that I a mucus retention cyst in my sinus. I was told that it doesn't cause headach but I insist to have it removed and I never had an episode since. Please insist to have your ENT or Neurologist do a CT scan and if there is any mucus retention cyst let them remove it. Hope this helps!
  26. CHfather

    C02

    This video is good. https://www.youtube.com/watch?v=PtFHRIQN17s He's using the special mask/bag called the "ClusterO2 Kit," which can be purchased, and he has a higher-flow regulator, but the technique is clear. Some people start with quickly drinking an energy shot or some caffeine, which typically speeds aborts. Deep out. Deep in. Hold. Repeat. Stay on for 5-10 minutes after you have aborted the attack. Your mask might have one or two circles of open holes in it. There might be one set of holes that has a gasket behind it, and one that are just open. Put tape over the open holes, or cover them with your thumb as you inhale.
  27. Scott1973

    C02

    How is everybody using oxygen it is new to me and I just had my tank delivered thank God
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