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Everything posted by jseivers

  1. Hey RVC, I can tell you that I am currently using a 10Lm O2 concentrator with the Cluster O2 Kit from clusterheadaches.com and I have been able to abort every headache that has started. I do know that others have spoken against the concentrators and I can only speak for my experience. When the concentrator was delivered, a M Tank was also delivered for backup purposes if the power was to go out. Unfortunately, the M Tank had a 8Lm regulator delivered with it. I have been looking for a 10-15 Lm regulator that I can add to it, but have been unable to find the correct one for this tank so far.
  2. My CH are episodic, so the first round I had with them almost 4 years ago happened about every other day and at night about an hour after I fell asleep. This was before I started prednisone. The prednisone seems to, at the least, break up the headaches making them happen at different times and I do believe it helps to end the cluster cycle. This round, before I started prednisone, seemed to happen between 5 and 6pm, which was great since it was not affecting my sleep as much. i started prednisone and then eventually got the oxygen. Now, I am off of the prednisone and just doing the oxygen. I do feel like I am on the back end of this cycle as the headaches are not coming near as often as a few weeks ago. For example, the weekend before last I woke up 3 times on Friday night (1am, 3am and 5am). Went to my man cave and jumped on the oxygen. Within 5-10 mins, it was gone each time. Saturday night was two times, and Sunday was zero and a full nights sleep. Slept full night Mon-Thur of the next week. This past Friday, it was 3 times just like the previous Friday, 2 times on Saturday and zero on Sunday. Starting Sunday night I began taking two Benadryl before bed and have continued that this week and have not been woken up yet. I plan to continue that through this weekend to see if it works on the weekend as well. Trust me, getting up 3 times and aborting with oxygen still beats a headache. I surely appreciate all the feedback and other options you have provided me. My hope is that since the CH hit me at a later age, that I will age out soon. The fact that I did not get my first cycle until after 40 years old and didn't get my second until 4 years later is a win in my book after reading other folks stories. I have a good friend that dealt with them for years and he had a CH every 2 hours. I cannot even begin to imagine what that would do to a person.
  3. Thanks for all the responses. Very helpful information.
  4. I will take that advice and continue on the oxygen for some time after the headache subsides. Yes, I am using what my doctor prescribed me. I did receive a M tank for backup purposes, but it looks more like a missile and is definitely not portable. I hope, since the nasal cannula is helping, that the mask I ordered will also help with delivering closer to 100% oxygen. The regulator they provided with the M tank only goes up to 8lpm. I understand you can purchase regulators from Amazon, etc...that go higher. Has anyone on here had luck with the Boost Oxygen 10L tanks from Amazon ? When reading the reviews, I saw a handful of people saying they successfully used them for aborting clusters. Thanks for that link....I will move on to some more reading now.
  5. I was put on oxygen therapy this past week for my second bout with CH. 10L/m concentrator with nasal piece instead of mask. I have ordered the Cluster O2 kit from cluster headaches.com that should arrive this week. The day I received the oxygen (Thursday), I felt a headache coming and got on the oxygen and within 15 mins, it was gone and had absolutely no after affects from the headache. Friday was clear but felt one coming Saturday afternoon and hit the oxygen and again, within 15 mins was gone. Last night I woke up around 1am, 4:30am and 6:30am with the start to a headache and hit the oxygen each time and successfully aborted each headache. My question. When doing these headaches with oxygen, is this a normal thing that other people have seen with them trying to start multiple times? I really just want as much information as possible to plan accordingly for venturing to work and outside the house, as the concentrator is technically portable, but it's not the most convenient things to carry around. Has anyone used the oxygen tanks sold on Amazon that are for sports rehabilitation therapy? Also, I am currently on my third week of Prednisone taper 60mg first week down to 10mg sixth week.
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