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sierra last won the day on March 5

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  1. Skepticism...... I have been skeptical of almost everything known to treat CH because I have tried them. But we can't give up. To me, the most difficult part of determining efficacy for any treatment is the fact that it just stops working after a while. Verapamil worked for me for about 2 years, I had to keep upping the dosage to get results, and then it just stopped working period. I used MM for 4 to 5 years successfully and then it just stopped working. I started the d3 regimen and have been 'loading' for 15 days now. I am also using Quercetin @ 3,000mg a day because I have allergies.
  2. Are you sure the tank was full? take the regulator off and just crack the valve on the tank for a second, should be high pressure escaping when you crack the valve...if not, the tank is empty.
  3. Hello Jacob, most of the people on this site have been where you are now. In order to get the best advice/help please tell us about your back ground with treatment, a lot of people think they have tried 'everything' before coming here and that is not always the case. Do you have oxygen and know how to use it properly? if not please read up on it and check the files on this site. Are you currently taking any Dr. prescribed meds ? if so, please let us know what they are. Have you been diagnosed with cluster headaches by a doctor? There is nobody here that can 'cure' cluster h
  4. Thanks for posting CHf, at least some part of the medical community is trying to help. It's good to keep up with progress.
  5. Hey, finally a discussion I think I can add something to. I am no oxy expert but I am a hell of a technician with anything mechanical. You have to keep in mind that 'flow' is a combination of orifice size and pressure(psi). The bag on these masks is nothing more than a temporary reservoir. If the bag is not completely exhausted after you inhale deeply it is big enough, if it fully re inflates while you are exhaling, your flow is probably adequate for your lung capacity. That 22 gal. bag may look cool but I don't think it's helping anything. The one way valve in the mask is a simple o
  6. CHF, thanks for the correction....I understand that the spray works for some people. I just tend to have a short fuse when it comes to the medical community not advising patients on the proper use of oxygen. Trex is a love/hate thing with me, I still keep some around and always take it with me when I travel in case of an emergency. However, before I found this site trex was my only weapon. When you are getting hit 5 times or more in a day it's like an addiction. I learned how to split the injectors and experimented with the dose. In my case, anything less than half (3mg) would not abort for me
  7. Hi Jen, CHfather is one of the most knowledgeable, experienced people you will find when it comes to CH. Right now you need to think about the difference between aborting an attack and then preventing one. Your first priority should be to get oxygen now. Please read up on the attachments from CHfather....get the mask first then focus on the oxygen. Every area/doctor is a little different, some of us have trouble getting medical oxygen and just use welding oxygen. Once you have it you have to practice your breathing technique .....read the files and watch the videos. Oxygen is used to abort an
  8. Mit, do you put them in the freezer?
  9. I would be willing to participate if it helps the cause.
  10. Welcome Debs, let's start with...have you seen a neurologist, if so, what was the diagnosis and suggested treatment. This place is a great resource for those who suffer with CH but we need to know a little more about your situation and how you are being treated. Please poke around the site for a while, read some of the threads that sound similar to your situation and some of the files on oxygen use and procurement. Please post again with some info on how long you have had CH, is it a seasonal thing, did it just start etc. I am a rookie at trying to help others but there are plenty of folk
  11. I took it for about two years, before it stopped working for me. I took it as a daily med, I forget the dose. It was prescribed by my neurologist. If I remember correctly, I took it for about 3 days before it kicked in and the headaches stopped. I was able to tolerate the constipation with a laxative but the fatigue was frustrating. It's was a good news/bad news thing......good news-CH was gone......bad news-had to live with the side effects. As it is with most meds, everyone reacts differently. In my opinion it is worth a try but you need to develop a back up plan in case it stops working or
  12. The vast majority of posts on this site are from new members who desperately need help, and that's great. The moderators jump in and provide the best advice and guidance you will find anywhere. I was lucky enough to find it in 2014 after my neurologist threw up his hands and said 'I don't know what else to do'. (I was on my fourth neuro at this point) after over 10 years as an episodal CH I had become chronic and verapamil just stopped working. I was having 5 attacks a day and the only tool I had was sumatriptan, insurance only covered eight boxes a month and I had to buy the rest. This went o
  13. Welcome Chris, chfather is the expert on oxygen here. I hope some of that 25 pages you read was from his white paper. The big deal is a non rebreather mask and about 15 lpm. You will find many threads and stories here that are similar to yours where the perscribed pharma stops working. The other thing you will learn is that this damn disease morphs and changes over time.....I have had it for over 15 years now, it started out like yours ....episodal or twice a year. when verapamil stopped working I became chronic, the attacks came every day. This site and the great moderators here saved my but
  14. Welcome Doc, I would not wish this condition on anyone, but I do wish there were more neuro's who were as interested as you are in finding new or alternate ways to treat CH. I have been to four different neuro's in the Detroit area and none of them were any help. The more Doctors we can get to attend, the better, try and bring some of your fellow neuro's.
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