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xxx

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Everything posted by xxx

  1. Hey Atama, CHfather was spot on suggesting you contact the staff at OUCH-uk. Their Hot Line number is 01646 651 979. You can also go to their website at: https://ouchuk.org/ Ask them to email you a copy of the NHS Home Oxygen Order Form (HOOF), fill out your part and have your PCP or neurologist sign, Keep a copy... This bbn is not accepting attachments for some reason so I can't attach the HOOF at this time. However, if you'll shoot me a PM with your email address, I'll send you a copy. Check your PM InBox. I've sent you some additional info to discuss with your PCP.
  2. Hey MoxieGirl, Howzit in jolly old England? Howz the head? Long time no hear... Try pasting your link then replace the "." with the word "dot" with the explanation to readers to copy the link, replace the word "dot" with a period then place in their browser. For example, http://isdotgd/clustervitd Copy this link then replace the word "dot" between "is" and "gd" with a period then past in your browser. You may also see a black banner come up when you paste a link with "Remove the Link" and a button to do so. Readers will still need to paste the link in their browser, Tak
  3. xxx

    Q Collar

    Hey Ddove, Good question on the Q Collar. Before venturing an answer if it would help reduce or prevent CH while sleeping, I'll offer the following. The pathogenesis of cluster headache is a complex, multivariate sequence of physiological events that have yet to be fully understood and described by the experts. That the standards of care recommended preventative treatments used by neurologists and headache specialists experienced in treating patients with CH haven't changed in over 20 years gives proof that CH pathogenesis remains a mystery to modern medical science. Busting and v
  4. Have your husband drink a big glass of ice water... preferably through a straw, The goal of the ice water is to create a mini brain freeze. Chilling the hard pallet chills the sphenopalatine gangia on both sides of the nasal cavity. As the sphenopalatine gangia are connected directly to the trigeminal ganglia where the CH pain originates this chilling triggers the vasoconstriction that is part of the cluster headache abort mechanism. Your husband should be drinking 2.5 liters of water a day. The reason oxygen therapy and energy drinks are not effective is your husband is either sufferi
  5. Hey Doug, You've got the Michigan Headache & Neurological Institute (MHNI) 47 minutes away in Ann Arbor, MI. This is one of the top headache centers in the US with a medical staff of experts in treating patients with primary headaches. It might be worth giving them a call. It appears Dr. Joel R. Saper is accepting cluster headache patients episodic and chronic for studies of a new intervention, likely one of the mAbs tested earlier on migraineurs. Take care, V/R, Batch
  6. Hey All, Thank the money grubbers at photobucket for the missing photos of the Redneck Reservoir Bag. Here they are courtesy of imgur. I used white electrician's tape to make the gas tight seals around the Coke bottle and oxygen tubing. You can see the Duck Tape that seals the open end of the kitchen trash bag. You can use a box cutter to cut the bottom off a plastic Coke bottle. This will become your mouthpiece. Remember to keep the bottle top. These things are amazing. I have a $500 oxygen demand valve and the Redneck Reservoir bag has zero resistance dur
  7. Most of us old timers are all about educating neurologists about CH... The sad fact is CH is so rare, most neurologist have never treated a patient suffering from CH, let alone have a CHer present with an actual attack... Dr. Todd Rozen did a survey of CHers then added the insight that from his perspective as a seasoned headache specialist having worked out of the top neurological headache institutes and centers, that most neurologists have never treated a patient with CH during their entire career in neurology... The path of least resistance is usually the best course of action. Take
  8. Awitcher, Great question and the short answer is Yes. Oxygen therapy, if properly administered can stop a CH hitting while sleeping all the way up to a Kip-9 on the 10-Point Headache Pain Scale. Once a CH has risen to a Kip-10, we're all along for some heavy sledding as very little works to abort CH at this pain level. You need to understand that oxygen therapy, even administered properly, is still just an abortive and not a preventative... That means your next regularly scheduled CH attack will hit anyway. This can be frustrating until you realize when used properly, oxygen ther
  9. Hey CHsuckedmylifeaway, I've sent you a message with some additional information. To read it, click on the envelope icon in the top right blue border at the top of this page. Nerve blocks can bring wonderful relief from the CH pain. However, as they are only providing symptomatic relief and not addressing the underlying causes of CH, they don't last... unless you are episodic and your cycle was ending anyway. Take care and please keep us posted. V/R, Batch
  10. Hey Greeneyes, Sorry your neurologist is such a dud... He should have prescribed oxygen... and hyperventilating is helpful in holding the CH pain level down as it elevates your systemic pH making it more alkaline which triggers vasoconstriction. It's normal for the anti-inflammatory regimen to cause changes in CH patterns until it kicks in for a pain free response. A few CHers have reported switch hitting on the opposite side so nothing new there. That the overall intensity is down is a clear indication you're building your 25(OH)D reserves so a significant response or a pain fre
  11. Woo Hoo!!! I'll block out the dates as soon as they're available... V/R, Batch
  12. Good points Jon... except I would take it a step further and make an anonymous call to the city health department and report the problem... Raw sewage fumes are a very real health hazard! V/R, Batch
  13. Hey Greeneyes, As you appear to be responding to this regimen, I would continue the accelerated Vitamin D3 loading schedule at 50,000 IU/day vitamin D3 for another four to five days along with the rest of the anti-inflammatory regimen. This is a safe and effective way of elevating your serum 25(OH)D up near 80 ng/mL where at least 83% of CHers experience a significant drop in the frequency of their CH or a complete cessation of CH. Poping and chewing the 50,000 IU of vitamin D3 softgels between your back teeth and swirling the contents under your tongue for 5 minutes without swallow
  14. Hey Scubasteb, If you run into problems following CHfather's excellent suggestion for cash and carry medical oxygen, don't be afraid to buy welder's 02... I understand your concern about cleanliness of welder's O2 cylinders. In reality, this particular issue becomes a mute point when you understand the differences in fill procedures for both industrial and medical oxygen. If you look at the FDA's Compressed Medical Gases Guideline issued under 21 CFR 10.90, the single biggest difference in O2 cylinder fill facility procedures for medical oxygen is a sniff of smell test of cylinder cont
  15. Hey KonaGuy, You Kamaina? 129 nmol/L = 129/2.5 = 51 ng/mL. If you are an episodic CHer, your target 25(OH)D serum concentration is 80 ng/mL (200 nmol/L)... If you are a chronic CHer... your target 25(OH)D serum concentration is 100 ng/mL (250 nmol/L). Either way, if the CH beast is still jumping ugly... I would take 50,000 IU/day for another week then drop back to an initial maintenance dose of 10,000 IU/day. If the CH beast continues to jump ugly after taking the first dose of 50,000 IU/day... I would start chewing/popping the 50,000 IU worth of vitamin D3 liquid soft gel capsu
  16. Hey ClusterSpouse, Sorry for the delay in responding... Just got back from a 10-day fishing trip in Alaska... Great question and thank you for being a super CH supporter. The fastest and most effective way of elevating serum concentrations of vitamin D3 and its first metabolite 25(OH)D is by taking it sublingual (under the tongue) or buccal (inside the cheeks and lower lip). This is where Vitamin D3 sprays and liquid formulations are king as they bypass the GI tract passing directly into the bloodstream through the mucosal membranes in the mouth and this results in better absorpt
  17. Jerry, Many thanks... My second best birthday present came from my wife when she said "Go buy a new spinning reel" after looking at the reel I've taken to Alaska for the last 6 years... I've washed it daily with fresh water while fishing and kept it well oiled... but the elements and continued use have still taken their toll... so I ordered one of the best with a stainless steel body and internals. It will last a lot longer than me.... (I didn't tell her what it cost). My best birthday present came from my daughter on 22 August... Orrin Gustav... 7 lb 8 oz... Our 8th grandchild.
  18. Hey Greeneyes, With a baseline 25(OH)D serum concentration of 28 ng/mL, I would start the 12-day vitamin D3 loading schedule at 50,000 IU/day. After 12 days you can drop back to an initial maintenance dose of 10,000 IU/day vitamin D3. This loading schedule speeds up the time it takes to elevate your serum 25(OH)D concentration to a therapeutic level around 80 ng/mL. Doing this should also reduce the time to a favorable response to this regimen with a significant reduction in the frequency, severity and duration of your CH. You can speed up this process even more by taking the vitamin
  19. xxx

    TKUMMER

    Tim, Look for vitamin B 100 complex... If you can't find it, any good B complex should work just fine. Take care and please keep us posted. V/R, Batch
  20. xxx

    TKUMMER

    Hey Tim, You need the rest of the anti-inflammatory regimen supplements that go along with vitamin D3. The following photo illustrates what I've been taking for more than 4 years and they work just fine for me in preventing my CH. The vitamin D3 cofactors: magnesium, zinc, boron, vitamin A (retinol), vitamin B complex and vitamin K2 complex are all very important in metabolizing vitamin D3 to gain the optimum CH preventative capacity. Omega-3 fish oil is another important anti-inflammatory that helps prevent CH. If you take the above supplements by brand you'll be getting w
  21. Greeneyes, 2,000 IU/day of vitamin D3 is not enough! If your doctor said your vitamin D3 a.k.a., serum 25(OH)D was low, it was likely less than 30 ng/mL... Ask to be sure. If it is that low, you need to start a vitamin D3 loading schedule of 50,000 IU/day for 12 days, then drop back to an initial vitamin D3 maintenance dose of 10,000 IU/day. Try to pick up some 10,000 IU vitamin D3 liquid softgel capsules and take five (5) of them a day for 12 days along with 400 mg/day magnesium, 1000 to 2000 mg Omega-3 fish oil and the Kirkland brand Mature Multi... You can order the Super K once
  22. Hey Greeneyes, Have you asked your PCP for the 25(OH)D lab test? I suspect you're vitamin D3 deficient and that deficiency is contributing to the frequency, intensity and duration of your headaches. You can download a copy of the anti-inflammatory regimen by going to the VitaminDWiki.com web site in the headache section. You can also scan the following QR code with your smart phone and it will download a copy of this regimen. The QR code app is free. It takes less than 15 seconds to download and install. You can also past the following link in your browser to download this
  23. Hey JBH, I suspect you're vitamin D3 deficient (<30 ng/mL) and that deficiency is contributing to the frequency, duration and intensity of your headaches like it has for over 75% of 600 CHers taking the anti-inflammatory regimen. Baseline 25(OH)D lab results for 25(OH)D from the online survey of 215 cluster headache sufferers (CHers) taking the anti-inflammatory regimen to prevent their CH are illustrated in the following normal distribution curve. 25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status... The 25(OH)D normal reference range is 30
  24. Kimbrit, Welcome to Clusterbusters. We know what you've been going through and the good news is it doesn't need to be that way... There are many "old hands" experienced in controlling CH here to help you. Your concerns about taking Carbamazepine are valid...Why neurologists prescribe antiepileptics for cluster headache is baffling... It is not among the Standards of Care recommended interventions (prophylaxis) for cluster headache (CH). The odds are very high you are vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your episod
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