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  2. Wonderful news about the cessation!!! We've discussed splitting your injections (if they're 6mg) at another thread. Something to keep in mind at your Jefferson appointment is that there is a CH "lookalike" condition, hemicrania continua [HC], that is all-day head pain with occasional "exacerbations" into more severe pain. It doesn't seem highly likely that you have this (because I don't sense that your headaches are continuous), but maybe it's worth discussing, since there is actually a treatment for HC in taking the medication Indomethacin. HC is generally not fully responsive to oxygen or triptans. Some people have suggested that Indomethacin can also sometimes work for CH. It's a difficult medication for some people because the gastrointestinal side effects can be challenging. Of course, you are much better off if less harsh approaches, such as the D3 regimen, work for you.
  3. Sorry for the delay, I didn't get the notifications I expected. I'll figure it out. Anywho, the 10-20 minutes is the peak of the attack, the portion of absolute misery that redefined my understanding of pain. All of my attacks have happened in the afternoon/evening, and I had the shadow on and off for several hours before things escalated into an attack. Looking back through my notes, I'd say there's shadow with more modest pain levels for a few hours, then the climax of the attack lasts 20-30 minutes. I have treated them with sumatriptan pills. Obviously that's too slow for these attacks, but I didn't really know what I was doing at that point and hoped it would at least quell additional attacks for some period of time. I have since met with my neurologist who agreed they were cluster headaches, and I got sumatriptan auto-injectors to help going forward. We also discussed the possibility of trying emgality, but haven't started that process yet. In the meantime, I also went all in on the anti-inflammatory regimen. My hydroxy 25 was already 63 ng/mL because I've been taking D3 for a while, but I added the co-factors and loaded up the D3 for a bit and quickly crossed 80 ng/mL. Since I hit that level, I haven't had a single cluster. That's only 11 days, but the prior 4 clusters were getting much closer together in timing, so that feels like a potential win. I have an appointment with Jefferson Headache Center next week (was already on the books for migraines), and I'll consider getting oxygen and see what they think about the whole situation.
  4. Last week
  5. What I find odd, is many of the things we get relief from (Caffeine, hot showers, Verapamil) are all vasodilators...not constrictors. So, if this is caused by dilation of the maxillary artery it seems odd, that more dilation would help? I mean the single best abortive many have found, oxygen, is also a vasodilator.,
  6. @Douglas Ward i want to post something from Dr Shevels post a few years ago , seems he changed his theory of what causes clusters The medical rationale for my treatment of cluster headache is as follows: Primary headaches, including cluster headache, are exceedingly complex conditions and difficult to treat due to the great number of anatomical structures in the head and neck, which are all interlinked in some way. These structures include the brain and nervous system, arteries, muscles, tendons, sinuses, joints, and teeth. Many of these structures are innervated by the trigeminal nerve, which is widely accepted as the main conduit for primary headache pain, including cluster. There is widespread agreement among headache specialists that many cluster symptoms occur due to the involvement of what is called the sphenopalatine ganglion (also known as the pterygopalatine Ganglion). One of the therapies being used at present to minimize the severity of cluster is sphenopalatine ganglion stimulation (Lainez, MA et al.Sphenopalatine ganglion stimulation for the treatment of cluster headache. Ther Adv Neurol Disord. 2014 May; 7(3): 162-168). The sphenopalatine ganglion is situated behind the upper jaw under the eye, and the maxillary artery is very close to it. When the maxillary artery dilates, it gives off pain producing neuropeptides – in patients where the dilated maxillary artery is very close to the sphenopalatine ganglion, the ganglion is without doubt affected. Migraine can in no way be compared with cluster – but there is one vitally important similarity, and that is that they both respond to sumatriptan. Sumatriptan was developed as a vasoconstrictor to treat migraine, but as it transpired, it is far more efficacious in the treatment of cluster than it is in the treatment of migraine. As the members of Clusterbusters are very aware, Imitrex (Imigran in some countries) injections are the most reliable and effective way of aborting cluster attacks for most cluster sufferers. Remember, the only action of Imitrex is to constrict the painfully dilated extracranial terminal branches of the external carotid artery. It has no other action. This leads to the logic that if Imitrex works in cluster, then in cluster the painfully dilated EXTRACRANIAL TERMINAL BRANCHES OF THE EXTERNAL CAROTID ARTERY are INVOLVED IN THE PAIN. The rationale and aim of my surgery is to achieve a permanent Imitrex effect. When the maxillary artery is permanently closed surgically, it no longer gives off pain-producing neuropeptides or impacts the collection of nerves of the sphenopalatine ganglion which generate the intense pain. An illustration appeared on the cover of Cephalalgia in 2012, entitled “Location of maximum pain intensity in 209 patients with chronic and episodic cluster headache”. It is no coincidence that the precise area depicted is supplied by the maxillary artery. I am unable to post images here, but these can be referenced at http://www.theheadacheclinic.net/cluster-headache-treatment/ In my treatment of cluster, the most important element is permanent closure of the maxillary artery on the affected side. The major difference between the symptoms of cluster and migraine is because in cluster, not only are the scalp arteries involved, but the maxillary artery is also involved. All the arteries that I close, including the maxillary, are done through small superficial incisions. These procedures are done in a day care facility and patients are discharged the same day. It is important to note that these same arteries are closed by Neurosurgeons, Maxillo-Facial Surgeons, Plastic surgeons and ENT surgeons every day for a variety of other reasons. In spite of this there has never been a report of the blood supply being compromised as a result. A small number of patients have had temporary numbness of the skin or the cheek lining, most of whom recovered within a month or two. In the few cases where the numb patch persists, it is a relatively small price to pay for being pain free. If it was only the maxillary artery that was responsible for cluster, the procedure would be done in a day and the patient would be able to fly home a few of days later. Frequently however, other anatomical structures are also involved in generating the pain. The most common are other terminal branches of the external carotid artery in the scalp, but the jaw and neck muscles and the three branches of the trigeminal nerve may also become painful.
  7. hi @Amholla3 , very sad to hear you're suffering again . I'm chronic and i suffer with constant neck problems , shoulder pain and rhomboid pain on the right side (same side as pain from CH) . i find brufen helps when i have a lot of pain but thats temporary , massages help a little , i want to start exercise for back and posture and see if that will help , it causes a lump on the right side of my neck.
  8. Join Clusterbusters in raising awareness for cluster headache! Our 9th Annual VIRTUAL #CureForCluster 5k for Cluster Headache Research will be held Saturday, June 22nd, 2024. The #CureForCluster 5k Race Bags are only available to U.S. Residents this year due to rising shipping rates & tariffs. We apologize for the inconvenience. For more information and to register: https://conta.cc/3Dx1mvU
  9. +1 for hot shower. Before the diagnose and. Before O2 it was the only relief.
  10. I fully promote the hot soak and have aborted 100's of attacks that way. Sometimes 6 times a night like an oxygen user. Edit, big hits never abort that easy though...
  11. I will get in the shower, sit on the floor and keep turning up the heat everytime I get accustomed to it, sitting it covers my whole head and shoulders and I get it to nearly blister heat and it can help a lot, never abort but cut the sharp corners off. I know I have read on here others who use hot showers or baths to help them as well.
  12. For the longest time, I used to get pain/tension right at the base of my skull on the right side and within minutes the beast smacked me upside the head. Been a few years since that has happened, but that kinda stopped when they went insane on me after stopping a drug the name I forgot but anecdotally has seemed to jack up a lot of people after stopping it. Likely it is because the low grade pain and ache from the shadows have overridden it for me, but you can use it as a signal to get your ass on the o2 and maybe hit before it even starts.
  13. Mine started off with a couple a week, but long, 2.5 hours from the start and still are. Since I got no breaks even in the couple a week, they were chronic from the start, just low end of the spectrum. I had been t-boned and trashed my neck the weeks preceding the ch, so I have felt that may have been the 'trigger' but who knows. A butterfly farting in Argentina could have been the cause. They do sound like them. As was asked do they ebb and flow or ramp up to the level they stay at until they 'drain away' at the 10/20 minute mark? That is usually one of the main things they ramp, stay at that peak until they drop off again. Cold turkey caffeine stoppage can cause withdrawal headaches as well. That may be a precipitating factor as well.
  14. Sounds a bit like my experience, scrambled them for a month, including less hits and lighter ones, the next month was a random schedule but lessened, the three and fourth month they began getting steadier and came back fully by the end of the 4th month, mind you I had some home dhe injections for a few weeks after.
  15. Ok, zapping and killing nerves, is this not just a gamma knife with a different name or nerve transection with a different name? both of which have shown to help in the short term but remissions are high. Which both also have a pretty high likelihood of facial paralysis (permanent) with extreme facial droop among other side effect possible. Also, the three branches of the trigeminal nerve, two are sensory only so have no interaction with tendons or musculature, providing sensory response to the orbital of the eye and above and mid cheek/face. only the mandibular has any motor function and that is to the jaw, one of the places that gets hit less than those two above. So growing into a tendon seems a bit out there as a diagnosis as well.
  16. @Douglas Ward Yes, we all get that you're promoting Dr Shevel and interested in recruiting neurologists to learn his procedures. First, I know of no one in the online clusterhead communities who would ever reccomend him or his procedures as an option to another clusterhead. Second, same thing goes for reccomending to a neurologist that they should seek out his knowledge and/or experience. And lastly, advertising, marketing, and promotion is prohibited in this forum and any future attempts by you to do so will result in an immediate ban. Dallas Denny
  17. In celebration of Cluster Headache Awareness Day, join our board and staff on MARCH 24 at 12pm ET for an informal chat. (Yes, this is the Sunday after CH Day!) Register for this free event: https://conta.cc/42RVIjh
  18. Hi! If anyone knows of a neurologist that is interested in Dr. Shevels technique I am happy to connect them to Dr. Shevel, or share my experience with them so they can investigate for themselves. Dr. Shevel is happy to share his knowledge with anyone who will listen. Please let me know, Thanks!
  19. I switched insurance last November (got married and joined my wife's plan!) and have had an awful time getting scheduled to see any type of doctor. I have some expired sumatriptan but historically the sumatriptan has given me a very bad reaction so I'm avoiding it as much as possible. Hoping to get some non-medical oxygen this weekend! Fingers crossed! And I finally have a doctor's appointment scheduled for early April. Hoping I can bust the cycle by then though!
  20. Is there a reason why you don't have oxygen or a triptan?
  21. An abortive that works once or twice, then nuthin'? Unfortunately that is a familiar scenario to me. Example: Back in olden times I tried the newly reported-as-effective jamming of hot pepper capsaicin cream up the nose on the affected side and it aborted a hit! That one time. Following that it was just all nose pepper fire, no relief. I'm also the type who has found during the first days of a cycle, all kinds of stuff like lower flow O2, breathing freezing cold air, vigorous exercise can abort an attack, but as the cycle ramps up, forget it.
  22. And another update! I've had three more hits and tried the oxymetazoline nasal spray with other abortive techniques (caffeine, 5 hour energy, chugging ice water, ice pack on head, ginger, etc) and have not had much success. The hit is shorter than normal (2.5ish hours) but not less painful. Bummed, but I'll keep trying it in case it works again, lol.
  23. Hello! I am back in a cluster cycle after 3 years remission (longest yet!). I noticed shoulder tightening about a month and a half ago followed by a knot in my neck about 2 weeks later. 2 weeks after that and I had my first hit of this cycle. The knot will be extra painful right before and during an attack. It's helpful in warning me but not helpful in that it's extra pain and I am worried that "aggravating" it may trigger an attack! Does anyone have any thoughts on the cluster knot and if addressing it will help abort the hit or lessen the cycle? I don't remember having a knot like this in my other cycles... I should start documenting the headaches so I can reference past experiences! Thanks in advance!
  24. When my CH started it was only 20 minute attacks and just a couple few hits per week. It has progressed to more of a classic full blown CH since. With grandma being diagnosed it def smells like CH or combo migraine ch. I hope you can get it figured out! Great forum you are on. GL!
  25. We can't wait for Clusterbusters 2nd U.K./European Conference! This event is a great opportunity to connect with the cluster community for support, education and advocacy. Join us in the vibrant city of Glasgow for a weekend with speakers including neurologists, patients, and caregivers. The agenda will include safe rooms, treatment workshops, demonstrations, and the chance to share and learn from others' experiences living with cluster headache. Register today! https://cbglasgow2024.planningpod.com/
  26. Alx, I don't know your situation or how much a scholarship might be able to cover, but I do suggest that if you are really interested in attending you apply for a travel scholarship as it's within a day's travel of where you are located. If travel isn't something you can manage, I understand as someone who can't do it myself. But I wanted to make sure you at least were aware that the application was available. Apply HERE. Take care!
  27. Wish I could give you a good answer to the "why" part, and I suppose it's possible that your caffeine use was somehow keeping them at bay, but I don't think anyone knows the practical "whys" of how CH begins. I also don't know what to say about the pattern of your attacks, which is indeed unusual. As you say, your symptoms sound CHy, for sure, although 10-20 minutes is on the short side for attacks (but again, not completely unheard of). Are the 10-20-minute attacks situations where you've been having some pain and then it ramps up and then drops down again, or are they more self-contained experiences that start and stop in the 10-20-minute period? Have you tried anything for treating them (you mention sumatriptan that you have for the migraines, but you don't say whether it's in pill form or injectable)? Since you're new to all this, you might take a look at this "overview" file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
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