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  1. Hi All Is anyone (UK) suffering unnecessarily due to difficulties with speed of service. Last cycle was April time. Usual Verapamil treatment failed to work so I survived on Sumitriptan. Managed to get phone appointment with doctor and eventually face to face appointment once additional doses of Verapamil failed to improve headaches. Doctor booked a Neuro appointment but cycle finished before this appointment (August) Saw neuro in August who sorted new treatment plan including oxygen - but couldn’t do anything about it until next cycle began. Shadows started yesterday so I was straight on it. Called doctors at 9 but earliest appointment I could get out of work hours was in 3 and a half weeks. (My cycle will be in full swing by then) Telephone appointment in 2 weeks but can’t answer the phone at work due to my job. (They can’t give a specific time) Was told I couldn’t get Neuro recommended prescription until I’d consulted with doctor. Took day off today to call the appointment line at 8:30 to try to get an appointment for today over the phone. Had to call 101 times from dead on 8:30 before being connected. Had to pester for a telephone appointment today because apparently an ongoing issue doesn’t count as an emergency (even though I was told yesterday I could phone and get an appointment the same day) had to argue my case for a phone call because I said I’d been seen by the Neuro and was asked why I didn’t get what I needed in August and had to explain the cycles and the fact that it took 4 months to get a Neuro appointment by which time I was out of cycle. Then had to explain what life would be like every day that I don’t have that medication. Shes going to pass the info to the doctor so fingers crossed I get a call today. Has anyone had the same experience of never being able to get to the bottom of anything before the cycle is finished if it’s own accord and then feeling like you’re starting again from scratch each time the cycle starts again. It’s a race against time! I’ve got 2 Sumitriptan injections left from last time so if the headaches kick in fully before I can get the medication I need I’m in for a terrible ride. (Once you put prescription in it usually takes 3 working days for Sumitriptan at least as they have to order it-that will take me to Monday even if I’m sorted today) On another note, I tried to bust yesterday (has worked before) but dried mushrooms I had stocked up since May didn’t work-not sure if I under dosed or if they lost potency due to storage. Didn’t get any effect at all (usually have some mild side effects) I could try again at the weekend and increase the dose (to avoid shutting the door) I don’t have any meds’ in my system -I issued coffee successfully for shadows. Just depends if the real Clusters kick in before the weekend ☹️ Many advise, guidance or sympathy appreciated!
  2. Hi All, this is my first post, but I've spent a lot of time on the site reading posts. It's a great community, thanks so much! So here's my hypothesis: I'm convinced that cluster headaches are caused by extreme muscular tension in the neck. If you eliminate the muscular tension, you eliminate the cluster headaches. Here's how we can start to test this hypothesis: I would love if each person who reads this checks themselves. My bet is that every one of you has a knotted muscle in the neck that's so tense it feels like a bone. And it's especially bad on the side where you get the headaches. Probably in the middle of the neck, between the shoulders and the skull. Here's my story: I've had very bad headaches since I was young, and started having cluster headaches when I was 19,in the summer before I started college. Twice a day, 3pm and 8pm,incapacitating pain in the eye-temple. I went to a chiropractor who popped something in my skull,and did a couple other things, and I felt blood flow into those area, and they stopped. I thought it was a one time thing. Then, after college, in the weeks after graduation, I started getting them again. Twice a day, same deal, etc. When I went back home, the old chiropractor had retired and the new guy was a quack. Fortunately, the horrible headaches went away after a few weeks, on their own. I started exercising regularly, especially my shoulders and neck, due to an injury, and I started mediating regularly. No more cluster headaches for about 10 years. But I get married and stop exercising and meditating so much. I'm about to start law school, and they come back again, lasting this time for a couple months. This is when I look the symptoms up online and discover that they are cluster headaches, and that there are other people who get them. No doubt, all the typical symptoms (ice pick in the eye and temple, flush, same times each day, watery eye and stuffed/runny nose on side of headache, etc). I'm relieved not to be alone, but also terrified that sometimes the cycle doesn't stop, it repeats indefinitely. They're going on for months, and I'm getting desperate. But I noticed that I keep getting them at times of extended stress. So I start looking at other things related to stress, and I start to meditate when they begin to come on. I can't meditate through the peak, it's just to much, but I can meditate through all the ascent. What I start to notice is that the pain isn't really coming from the eye-temple. It's coming from a hard muscular knot in my neck, on the same side as the headache. I can actually keep all the spasming-throbing right there in the neck until the peak of the headache when I lose focus and it seems almost like the spasming-throbbing in my neck is mirrored as incredible throbbing sharp pain in the eye-temple. Here's what I do: 1) get a couple deep tissue/trigger point massages. 2) Make a point to relax my neck and shoulders throughout the day. 3) Exercise the neck and shoulders at least twice a week with pullups and rowing-type exercises. 4) reduce my coffee consumption to one cup a day. 5) Also, I grind my teeth in my sleep. So I start making sure that I wear a mouthguard at night. 6) when I feel one coming on, at the very beginning, I try to actively attend to the neck tension and release it. And it seems to work, lessening the intensity after a few days and eliminating the clusters after about 10 days. I get them again when I'm studying for the bar, but now I can handle them and they only last a week or so. And I get them again last month, under pressure with fundraising for the business I'm building with a partner. But this time I start trying to relax, get a massage, reduce coffee, start exercising again, as soon as they start. Somehow they never develop into full-blown, rocking-moaning, stabbing-throbbing pain, except once. So here's my hypothesis again: cluster headaches are caused by muscular tension in the neck. If you eliminate the muscular tension, you eliminate the cluster headaches. And again, I hope you'll help me start to test this hypothesis: I would love if each person who reads this checks themselves. My bet is that every one of you has a knotted muscle in the neck that's so tense it feels like a bone. And it's especially bad on the side where you get the headaches. Excited to hear what you find!
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