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ClusterBusters

dgman77

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  1. dgman77

    Help needed

    Update: He went to see a new neurologist, place recommended on the list. Was good with the D3 regimen. Added another steroid taper and Verapamil. His blood pressure normally is 90/50. I bought him a blood pressure cuff to keep track. So far so good. 0 headaches since he started on Tuesday April 4th. The doc wants to slowly wean him off all meds (eventually). He couldn't believe he has been on daily meds for 5 years. I am so hopeful and can't thank everyone enough! This is the shortest cluster to date in 5 years. Signed, A very happy wife
  2. dgman77

    Help needed

    CHfather, thank you so much! Ordered the O2 regulator from Amazon for the E tanks. He has the mask and the 25lpm regulator. He has developed a technique for using the mask to minimize the O2 from being wasted. D3 therapy has seemed to help. Still having them, but not as frequently. Maybe this cluster will be shorter than most. Thank you all so much!
  3. dgman77

    Help needed

    Doctor called today. His blood test was 25, (that was after 2 days of 10,00mg D3). She feels better about him doing the D3 regimen now that she knows he is low. The big O2 tanks are still not in yet.
  4. dgman77

    Help needed

    We currently have 3 E tanks( 2 foot tall) and the low flow regulator. Called a bunch of places about the bigger tanks. I can't find anyone who carries them or is in our area. We might have to bite the bullet and just use the E tanks. I can get them everyday Mon-Fri) , as many as I need.($10 a piece, but you can't put a price on relief) Set the mask up, need more O2 flow. Fills slowly,But we understand why it works so well.
  5. dgman77

    Help needed

    I don't have the 15 regulator yet. I have to turn in the low flow one that I have or they will charge me an additional $25. I showed him the Harbor Freight one and he said it looks complicated. The O2 supply company told me the big tank is an MM. 3 foot tall. He works with high voltage electricity on a construction site and he is not able to bring O2 to his job site. If he did it would have to stay in his vehicle which is a 15 minute walk from where he is working. If the regulators are diiferent size, they probably don't have that either and will have to order it. Another delay with the big tank.
  6. dgman77

    Help needed

    They have ordered the big 3 foot tall O2 tanks for me (will be in next week). The regulators they carry (to rent) go up to 15Lpm. He is currently using 6lpm. His mask arrived today. I have found a regulator like the one we use that goes to 15lpm for about $35 on Ebay. Would that be okay? Some look really different and I am not sure if they will fit the tanks we get. On a better note. We started 10,000 D3 for 2 days. Then went to the full D3 regimen. On the 1st 2 days of 10,000 he got 2 headaches a day. None through the night (which has been the worst ones) Has been able to sleep in bed with me instead of in his recliner. Today as of 2:30pm, he had none today. 2 Days on full D3 Regimen. It is making a difference. Too soon to say if it will make it go away. He is on his last day tomorrow of the steroid taper.
  7. dgman77

    Help needed

    We ordered the o2ptimask. It will be here on Wed. Contacted my O2 supplier. They do not carry the big tanks, so they have ordered them for me. Will be here in 3-5 days. Till then we deal with the small ones. He can't take the verapamil, his normal BP is 90/50 on a regular basis, sometimes lower. Verapamil would be dangerous for him to take. I do have him taking Melatonin at night, 9mg. ( i have taken it for years to help me get to sleep) I contacted Batch the other day and am waiting to hear back from him. We did 2 days of the 10,000mg D3 only. Started the full regimen & loading tonight. I am so thankful for everyone's information. I can't thank you enough. I hope he can find some relief from this monster. PS, that video is so helpful when we get the mask. Thank you so much!!!
  8. dgman77

    Help needed

    Bejeeber, you were so right. He had 2 nights without and they came back today. He had his appointment with the neuro today. Didn't go very well. She did write a script for the higher O2. Also ordered the blood test.(done today) But she told him she had tried the D3 with other patients and it didn't work. Then tried to concoct her own formula, no magnesium, and 40,000 D3 for 2 months. She also told him to go from 150mg Lithium x 2 per day to 300mg x 2 per day. We don't think that would be wise. We are starting the loading tonight and all the other stuff along with.( no additional lithium) She told him if he did the regimen that he would get Kidney stones. (but suggested a much higher dose of the D3 ???) Very disappointed in his neuro. Trying to stay strong & try this.
  9. dgman77

    Help needed

    Thank you for saying that. But I feel I was slack, should have done the research years ago. We started the D3 10,000 mg yesterday. He was able to sleep through the night. He says it is still there, but not bad enough to take meds or O2. Is this a fluke? Normal? Not sure, but very thankful. Will take another 10,000 mg D3 tonight with dinner. Fingers crossed...
  10. dgman77

    Help needed

    We ordered the mask today. He has started on the D3, 10,000 mg today. Will do that for 3 days then go to the loading and the rest of the regimen. Asking for the blood test on Monday from the Neuro. Will probably order our own high flow regulator, as it would save money. As far as the O2, we will have to get them delivered. I am sure I will not be able to carry them (i am small) He tried the energy shot today, and it did seem to help. I can't thank you enough. This site is a wealth of information. As far as the triptan shots, he thinks it was causing rebound and has stopped them for now. (so far)
  11. dgman77

    Help needed

    He does have a mask. We have a couple of the E tanks. Insurance doesn't cover them. I pay $25 to rent the regulator per month and $10 a tank. I am in there everyday replacing empty tanks. He has an appointment on Monday with his Neurologist. I printed out one of the articles about the high flow O2. Will try to get a different script from her. About the D3 regimen, he takes a multivitamin everyday that has Boron 150mg and Vitamin A 2500 IU. Would that be okay along with everything else on the list or do I need to get them separate? I found all the other supplements. Had a very hard time looking for the Vitamin A in such a low dose.
  12. dgman77

    Help needed

    Thank you so much. He started the steroid pack yesterday. The O2 we have been doing all wrong. His neurologist prescribed 6 lpm. We will need to get the high flow regulator.(Monday when they are open again) I am going to get the D3 regimen today and start the loading. Hopefully this will help. Thank you so much.
  13. dgman77

    Help needed

    History: He has also been on Depakote 500mg x 2 per day. Also been hospitalized given Depakote IV. Has also had a trygiminal nerve block a year ago.
  14. dgman77

    Help needed

    Hello, My husband and I found this site. I joined for him, he is currently in a cycle and not able to function. He has had CH for 6-7 years now. His cycle lasts from 3 -6 months. We have found nothing to break the cycle. He is currently in his worse to date. Very intense, about 5-8 per day. Has been in it for over a week now. He currently takes 150mg lithium 2 x per day. Topiramate 200mg x 2 per day. We have oxygen, which he uses a lot. He takes either Maxalt or Sumatriptian injection when it gets bad. The headache now has been ongoing for 60+ minutes on oxygen & maxalt. He is nauseous, has not happened before. Is there anything that we can do right now to help or break the cycle? Any help would be great. Thank you,
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