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ClusterBusters

EggMan

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  1. EggMan

    POSSIBLE FIX

    All the “fixes” get overwhelming. I’ve heard/read/tried prescriptions, vitamin regimens, psychedelics, oxygen, triptans... and many say “theirs” is the cure... almost everyone though is still trying something else or looking for something better. I’ve had many false positives over the years only to discover “the magic fix” doesn’t work the next time (maybe didn’t work the first time). Part of me wonders if I’d be better off accepting it’s something I have to deal with and make it through my “cycle.” Just got fully on the D3 regimen (realized it’s more than just taking a lot of D3). Going for oxygen tank this weekend and might give the RC seeds a shot...
  2. EggMan

    Verapamil

    Avoid nitrates, alcohol, MSG, and nicotine. I have had good luck with verapamil too but seem to build a tolerance. From what I have learned here and on my own: try melatonin at night (might have helped me), try welding oxygen (going to try my next cycle), I wouldn’t try Sumatriptan (imitrex) unless your doctor gives your heart/circulation a clean bill of health. Sumatriptan stops my headaches %100 of the time but I’m episodic and split my doses.
  3. Thanks. I do split my sumatriptan. That has helped a lot. Just spoke to my doctor (GP) about oxygen. He said he would prescribe it if it’s something I want to try. He said it can be a “headache” getting everything cleared through insurance... I’d like to look into purchasing the equipment myself. Looks like 15-25 LPM with a large bottle is the way to go. I live in a very rural area without oxygen service. How would I go about getting the equipment? Buy it myself or get a prescription and that would allow me to buy it? (My doctor appointment was focused on higher dose verapamil that seemed to work and a nerve block that only worked for a few days... wish I’d been prepared for more oxygen questions for my next cycle).
  4. Hi Batch, Another member gave me your user name as a reference for D3 vitamin supplement. Any special type? I have just been taking the D3 from the grocery store a few at a time. Trying to get as close to 10,000 IU a day as possible staggered throughout the day. This combined with verapamil, topamax, melatonin, and Sumatriptan injections has this cycle under control. Not sure which preventatives are actually doing the trick, (maybe all of them) or maybe my cycle has come to an end and I just think I’ve found something that works... wouldn’t be the first time. Thank you for any info you can give me regarding D3 vitamin supplements type/brand...
  5. EggMan

    Sumatripton help

    I asked my doctor (GP) about oxygen a couple years ago and he seemed resistant and I didn’t push. He prescribed me the Sumatriptan injections instead and it’s been the first thing that has stopped my pain in its tracks. I have begun splitting the injections. I have a doctor appointment tomorrow and plan to ask about the oxygen again now that I’ve read so many positive results...
  6. EggMan

    Sumatripton help

    There is some evidence of rebound headaches. I have taken it pretty heavy with no noticeable effects. Look into “splitting doses.” Really half a dose stops an attack for me. Also, and I know everyone is different, but wait until you know it’s going to be bad enough to justify. Early on, I found myself using an injection at the first inkling of pain. I learned that some of these go away. Let them know Sumatriptan is the gold standard for cluster headaches. They call them suicide headaches for a reason. I have not tried it, but oxygen has been effective for many.
  7. EggMan

    Cluster rules

    Here are my rules: 1. No alcohol during my cycle 2. Take my preventatives when it starts. (Verapamil, topamax, melatonin, D3). 3. Always carry my Sumatriptan 4. Stock up on Sumatriptan for my next cycle 5. Go through the attack alone; nothing anyone else says or does can help me; and it just disturbs them to watch me squirm. 6. It doesn’t do any good talking about my “headaches” to people who don’t have them. They either cry (which hurts them) or think you have a low threshold for pain. I also start out mild and less frequent (once every few days at about a 5-7 KIP). Then I move into three a day 7-9. I feel like a 10 has to make me go unconscious and I’ve never been there. I enjoy rating things. I like your scale... though I’d edit it a bit. To me, any time you give a range/scale, each end has to be an extreme. 1. Mild annoyance (hangnail that’s almost healed) 2. Slight irritation (chapped lips) 3. Annoyance (tickle cough from cold) 4. Discomfort (headache; your every day type) 5. Ache (sprained ankle) 6. Pain (broken nose) 7. Torment (a bad migraine) 8. Agony (getting kicked in the nuts) 9. Torture (root canal without anesthetic, someone on fire, a cluster headache). 10. There are no words (you went unconscious).
  8. EggMan

    POSSIBLE FIX

    All too often you think you’ve found a “cure.” One year later you try the same things only to find they don’t work. (Cycle must have been over the last time). “FunTimes”, what are the D3 vitamins you speak of? Thanks.
  9. EggMan

    POSSIBLE FIX

    My story is like many of yours. Episodic, 12 years, didn’t know what I had until the past 3 years. Many false positives only to realize my cycle had ended. Just wanted to share what has worked; I think. Verapamil 80 mg three times daily, Topamax 25 mg twice daily. 12 mg melatonin (over the counter) before bed. For many years I took the same prescriptions but in lower doses and suffered through my cycle. Raising the verapamil finally seems to have worked. Many will need a higher dose. Give it time to work. The effects are not instant. Sumatriptan injections (6mg) for relief before the preventatives have had time to become effective. I began “splitting doses” when I couldn’t get enough injections to keep up with my headaches. There are videos on how to get to the syringe inside the epi-style injector. 3mg still gets rid of my pain- giving me 2 for 1 on each injection. I’ve never tried oxygen and since the Sumatriptan works so well with my “system” I doubt I will unless things change. I know the same stuff doesn’t work for everyone but I struggled for 11 years with no relief until now. I wish I’d known. Hopefully this helps someone.
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