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  1. Today
  2. CHfather

    Clusterbuster newbie

    tim', Gotta say that I had the same reaction as jon', including the sense that you obviously have had to work hard and endure a lot to arrive at your current cocktail, so maybe it's the best there is for you. But I hope you get another opinion. It's hard for me to imagine, for example, what that very small dose of verapamil is doing for you in the face of that large dose of lithium. Many people here have found that the vitamin D3 regimen is as effective, or more effective, than any pharma preventives. Some take verap along with it. And you might know about "busting" (the reason for the site's name), which involves using psychedelics (sometimes at levels where there are no "trip" effects) to treat and prevent CH. Like jon', I'm just sayin . . . . D3: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Info about "busting" is in the numbered files in the ClusterBuster Files section.
  3. Yesterday
  4. jon019

    Clusterbuster newbie

    Tim.....I will try to tread lightly since I do not know your medical history...don't even play a Doctor...and WASN'T asked....BUT 3 primary preventives...1 secondary and NO O2...screams to some of us that you are overprescribed and under oxygenated. With all those meds the side effects must be.....YIKES! Oxygen literally saved my life (along with ch.com)...is cheap...easy to use... no side effects...quick.... clean...LIFE ALTERING. Of the meds mentioned, verapamil is the most common....with 480 mg/dy (divided doses, usually immediate release form) being the reported sweet spot for clusterheads....and some going up to and beyond 1000 mg (me in high cycle). The D3 regimen is highly successful for a number of family members...basically vitamin supplements and way safer than most script meds....YMMV. Now I'll shutty…………. Best Jon
  5. timpromo

    Clusterbuster newbie

    Hi Mel, I've had Cluster headaches since 1993. 25 years now. I've gone through the gamut of treatment as well as doctors. From doctors who wouldn't prescribe anything to doctors who were willing to work with me. I'm currently under the care of a neuro. who has me on the following preventative regamin: 900mg of Lithium, 240mg of Verapamil, 1000mg of Depakote, 300mg of Gabapentin at night (to help keep me in REM sleep). I have a prescription for injectible imitrex to use when I get a headache. I split these to make them last twice as long. I also buy all of the imitrex that the prescription was written for instead of stopping when I am out of cycle. I keep a mini stockpile in my closet. This particular neuro is not an oxygen prescriber either and I while I feel like she's willing to provide me with any chemical I want, I may have a conversation with my primary or head up to the University of Virginia and visit with their Headache Clinic. They advertise the merits of 02 right on their webpage. It is amazing how ignorant doctors are. Don't be afraid to confront your doctor - everyone on this board has had to do it. Good luck! It does get better! Tim
  6. CHfather

    Why are doctors obsessed with sinus infections?

    Ms A', what are you doing right now for your CH? You said in a different post that triptans didn't help you. Was that in pill form, or as a nasal spray or injectable? Do you have oxygen at home now? There's a lot you can do for yourself without a physician, for example the D3 regimen, but other strategies, too. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
  7. jon019

    Why are doctors obsessed with sinus infections?

    Hi Ms A...welcome...glad you found us...we'll try to help...…... This will sound glib and frustrating...but is exactly why clusterheads HAVE to find a headache specialist. Even regular neuros get minimal training in headaches....PCPs probably even less. The best I had instructed me to call immediately when I got in trouble....and her staff was instructed that cluster patients had priority. Her clinic partner wrote a flaming letter of medical necessity that got me insurance coverage for oxygen and triptans....the ONLY Doctor, of any kind, who ever advised to "stockpile" meds (triptans) when out of cycle to combat the insurance companies ridiculous/heartless/clueless limits per month.... There is a thread here of clusterhead recommended Docs for various areas of the country: https://clusterbusters.org/?page_id=455 ...hoping one is close enough to you and taking new patients...be SURE to say you are a clusterheadache patient (in cycle if so!) and HURTING bad. Offer to fill in for a cancelled appointment. Bring any records of your diagnosis, any meds or strategies you have employed, a journal of some sort describing attack timing, numbers, pain level, possible triggers, cycle length, age of first incidence, symptoms, etc. Docs of any kind love this kind of detail from a patient...diagnostic jewels!....indicates you are serious, determined, thorough, likely to be treatment compliant. I will never forget the 1985 article I read in a headache newsletter that advised treating physicians that the presentation of such a journal...all by itself....was an indicator of clusterheadache….we seem to be a bit obsessive-compulsive... Best Jon
  8. Been suffering from clusters with migraines for about five years now, and though they've been diagnosed for these last three years, when I go to a doctor they still insist that it's a sinus issue. This was of course the diagnosis I got in the first few times I went, before I knew what was happening. I get that the location of the pain is similar, but believe me, I've had sinusitis before and it's nothing like this! I was in so much pain a couple of weeks ago that I was in A&E and despite informing the doctor what was going on she 'diagnosed' it as sinusitis and sent me home with amoxicillin! 24 hours later I was back in A&E being admitted because I had attempted to cut my wrists to make the pain stop. (I don't really even remember that day, it's just a haze of unfathomable agony that ended up with me in hospital.) At least the next doctor I saw put me on oxygen that calmed things down for awhile until I got onto a ward that actually took things seriously. How do you all convey to doctors that aren't familiar with your medical history that you are not, in fact, dealing with a sinus infection?
  9. Ms Adequate

    Indomethacin?

    I was put on Indo after triptans failed to do anything for me, and found it was actually highly effective for awhile - as long as I popped one when I felt a cluster starting up, it cut it from my usual two weeks down to about one, and only the first two or three days were severe, rather than the whole period being pretty much the same. Sadly this seems to have stopped now because the last few weeks have been hellish. But, yes, it can be a good thing for some of us. I can't say I had any problems in the gut from it, but I'm on lansoprazole for acid reflux anyway.
  10. timpromo

    Clomephine Citrate to break a cycle?

    I'm an episodic clusterhead. I was dx in 1993. I've been dealing with these sons of bitches for awhile now. I was in remission for almost two years then got blindsided on 5/3/18 with another cycle. 1-2 per day. No rhyme or reason in regard to time of day. Almost always its during a period of relaxation. I'm taking 2000 vitamin D3, 900 mg Lithium, 240 mg Verapamil, 1000 mg Depakote and I abort with subcu imitrex. I can't seem to shake this cycle. I will get a couple of days headache free but I just can't shake them this time. Batch, do you maintain the vitamin regamin year round or just during the cycle?
  11. Last week
  12. ...had the same problem with multiple ins companies...it's almost an automatic denial to make you go away...DON'T! 1) appeal...in writing...and phone (save copies, record all dates and names of who you talked to). If they say O2 is not approved for CH...they are WRONG...and practicing medicine w/o a license...call 'em on it....they hate that (be prepared to go to state ins agency regulators). Treat it as a game...play to win...what you learn the first time is REALLY useful and fun the next time (at least 5 times for me). 2) Finding a headache specialist neuro is CRITICAL for a number of reasons....but one really important one is to rely on this person for a "letter of medical necessity" which basically states the reason for this medically accepted treatment for YOU. I had one written for me that was almost too hot to hold...the Doc was pissed and effective...the O2 (and triptans) got approved really fast! 3) If you get your insurance through your employer...get to know the insurance broker who sold the policy to your company. This person is the actual customer of the insurance company ….they really don't want to talk to you except to say "go away"... but they WILL listen to this person. Your HR dept SHOULD be willing and able to facilitate this. Besides the necessity letter this was the most effective strategy for me.... 4) be willing to pay out of pocket....it's that important a treatment...life altering actually. W/o O2 I might have been dead or insane. Got to know the manager of the O2 shop....so you are a person to them not just another name in a file. Picked up tanks myself...saving them delivery costs. I bought my own regulators, mask and tank caddy online...really cheaply too. E-tank cost was $10-14 ea over time. M tanks are about 2 1/2 times bigger...last much longer....so less trips to the oxy shop...might be cheaper per liter...can't remember. You WILL need a prescription or they won't even talk to you...…….. 5) CHfather is absolutely correct...welding O2 just as good and a great option.... and once the logistics are figured out it is likely cheaper. Like he says...there are folks here who can walk you thru.... Best Jon
  13. I don't think they can legally refuse to provide it for that reason. O2 is a medically recommended and clinically proven treatment for CH. Call Humana. The process of fighting with insurers isn't fun, but I'd at least give it a serious shot. I'd check with your doctor's office, too. People have said that the battle seems particularly difficult in some states (Florida and New York come to mind). That might be a result of how O2 providers and insurance companies are regulated in some states -- I don't know. If you have a prescription, you ought to be able to get medical O2 and the related equipment (regulator and mask) by self-paying, but that might be real expensive. Another thing I don't know. As Tiaan said, you can take the alternative route as many have done and use welding O2 (which might even be less expensive in the long run, although there's more hassle because you have to return the tanks for refills yourself rather than having the a medical O2 supplier bring you the new ones and take away the used ones). It's hard for many people to appreciate how essential O2 is to managing CH, so either way, please don't give up. The welding O2 route is straightforward -- buy or rent tanks from a welding supply company (look it up online), and buy your regulator and mask online. If you decide to do that, let us know, and we'll tell you more.
  14. Hi Flwaters, so sorry you had to join this group, but you are in good hands now. These folks gave me my life back. Do a search on this forum for “welding O2”. There are a bunch of us, including myself, that went that route for various reasons. Good luck to you.
  15. I already had an MRI and a cat-scan of my brain and everything checked out fine.
  16. JUST GOT OFF PHONE WITH OXYGEN CO. I WAS WRONG!!! HUMANA MY INS. CO. WON'T AUTHORIZE UNLESS IT IS RESPIRATORY!!!
  17. I agree that the nuero was not helpful. Relpax/Eletriptan is a triptan - the same as Imitrex. You were given that in pill form I suspect as it is specifically for migraines. It is not for CH according Pfizer and pills are too slow acting for a cluster. Triptans for clusters are normally in shot form. With the old style diagnosis of cluster/migraine, he is treating you for migraines. Pretty sucky. It is very standard for a neuro to start you with a Prednisone Taper Pack, prescribe Verapamil and often prescribe Imitrex or another triptan in nasal spray or shot form. The spray works fast enough for some. The Pred provides quick relief ( a day) while the Verap builds up in your system. Your dosage of verapamil may wind up being quite high. That is not unusual for a CHer. Amitriptyline is Elavil - also mainly for migraines. Never worked for me either. It is an anti-depressant. Yea for O2!! Is it in tank form with a non-rebreather mask? concentrators do not work. There is info in the Clusterbuster Files on how to use it for the best relief. Most doctors do not tell you how to use it! Hopefully the new guy will do better. Please ask for an MRI of your head to exclude any other problems that may be there. A scan is very important to eliminate that other bad stuff. As for the D3, please read the D3 Regimen in the CLusterbuster Files section of the board. It includes a few other vitamins needed for the full regimen. You can also contact Batch directly. He is very helpful and give you the best D3 loading advice. It is best to get a blood test for your D3 levels when you start if possible. Not mandatory, but will give you a better idea of how much loading to start with. ATB
  18. I have also never tried or been offered pred taper. The neuro I had, was the worst.
  19. I finally got authorization for O2. I was sleeping today and missed call from O2 Co. Already started D3 regimen 10,000 IU a day; should I take more? Tomorrow going shopping for fish oil. I tried amitriptyline as preventive a long time ago and I couldn't do it, the higher that milligrams the worse the adverse side effects, I stopped at 30 milligrams. No, have never tried Trex. I am chronic and the only prescription drug that works for me to stop the pain is Relpax/Eletriptan, very expensive even with insurance ( $12.88 per one pill) never tried injections nor have I been offered them by any neuro.
  20. Yep. The standard Fish Oil at the grocery or pharmacy. I suggest the 'burpless' variety. Fish burps suck! Botox is very helpful for some, some migraine suffers. From my reading, it is not so effective for CH and the doctor administering it needs to know how to do that for Clusters, not just Migraines. Insurance can suck when you are trying to get O2. You likely will need the help of your doc. It can be a fight, but you can win that fight. I strongly suggest you start the D3 Regimen. It is easy, over the counter, and a huge help for many. What preventative were you given by the neuro? None? Did he just prescribe Trex and not a Pred Taper or Verapamil? Yes, Trex works. It is also bad for you over the long haul. And if you are getting hit 3-5 times a day, which two do you treat with the Trex? Using that med alone leaves you in a bad position. Remember - two shots in 24 hours max. There is a way to split the injections that can help. You are getting injections and not nasal spray or pills, right?
  21. 1000 to 2400 mg a day of the fish oil is what I think is recommended.
  22. Flwaters

    BOTOX REVIEWS

    Hello I'm new here. I was diagnosed by neurologist with cluster headache / migraine, a year-and-a-half ago after having been to dentist, ear nose and throat doctor, and Oral Maxillofacial. The only medication that touches this pain without any side effects is Relpax/Eletriptan. What I don't understand is why is most of my pain, about 80 to 90% only located deep inside my cheek right above my upper back tooth? Is this symptom part of Cluster pain?? Not sure if this is common or not? Or if it even is part of cluster headache pain?? I also just made an appt. with a Neurosurgeon today.
  23. FlWater, Saddly, there are too many CHers who were looking for relief from the terrible pain that submitted to surgical options and/or removal of teeth only to find the pain was not caused by a bad tooth or sinus infection. It was just cluster headache. The bottom line is try the first line cluster headache interventions before resorting to more invasive treatments. The best advice is see a neurologist or headache specialist with experience treating patients with cluster headache. The standards of care recommended treatments for CH prescribed by the top neurologists and headache specialists familiar and experienced in treating patients with CH include a short prednisone taper, and verapamil as preventatives and oxygen therapy followed by triptans (subcutaneous injections or nasal spray) as cluster headache abortives. If you're prescribed anything else, be sure to ask for the medical evidence on efficacy and safety of the Rx... I'll also add that since December of 2010, the vitamin D3 regimen has been found to be even more effective than verapamil in preventing CH and the terrible pain. Busting with psilocybin mushrooms is also effective for many CHers. There are many experts here who will help you if you go this route. Take care, V/R, Batch
  24. Batch

    Clomephine Citrate to break a cycle?

    Hey Sharon, Sorry I missed this yesterday. I generally buy most of my supplements at Costco per the photo below. I've recently switched from Nature's Bounty 5,000 IU vitamin D3 to Bio-Tech 50,000 IU water soluble vitamin D3 capsules as this is the least expensive form of vitamin D3 at 23 cents/capsule and it gets into the bloodstream faster than the oil based softgels. As one 50,000 IU Bio-Tech capsule of vitamin D3 is good for 5 days (An average of 10,000 IU/day) the cost per day is less than 5 cents where the Nature's bounty runs around 12 cents/day. The 50,000 IU vitamin D3 capsules come in handy during the 12-Day loading schedule as it beats swallowing 10 of the 5000 iU softgels each day. https://www.amazon.com/Bio-Tech-D3-50-50-000-200/dp/B00IAQUJH0/ref=sr_1_4_a_it?ie=UTF8&qid=1531495610&sr=8-4&keywords=bio+tech+vitamin+d3+50000 I order the Bio-Tech 50 K vitamin D3 and the LEF Super K with advanced K2 Complex from amazon or iherb depending on specials. Hope this helps. Take care and please keep us posted. V/R, Batch
  25. Oh dang!...forgot to add....allergies can add to the "demon's dance" (and many MIS-diagnosed w/sinus issues (me) e.g.)....many a clusterhead has found help with old school antihistamines like benadryl…."BATCH" has many threads which discuss this...just search his name....you won't be sorrrrrrrry ……….. Best So Late...….Jon
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