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Everything posted by jfrillin

  1. Yes....my husband does high flow Oxygen, Vitamin D and Emgality. Has had CH for several years. Can you recommend a resource (supplier)for Rivea Corymbosa seeds?
  2. Hello- Excuse my ignorance on this topic of Mushrooms. There is so much information on this topic in the benefits it provides for Cluster headaches. but how to go about finding medicinal mushroom is difficult ..particularly in a State where it isn't legal. Growing it personally isn't an option. Not sure where to begin. Husband and daughter have Episodic Clusters. Any advice on Medicinal Mushrooms would be appreciated. We are shooting in the dark.
  3. Cast Iron - he had already used 4 Imgality shots which was the max he can take in a week....and 3 Emgality Shots plus we always have O2 at home ...25 lpm regulater, rebreather mask and M tank. As I said. Both he and my daughter have had clusters for years. We are unfortunately "Pro's" in this area...not that we want to be. They also do the Vitamin D regimen. We went to the ER because nothing was working this cycle. He hadn't slept in a week..the pain wouldn't let him . Sleeping pills wasnt working. He was having suicidal thoughts. He wanted to be knocked out at the hospital with IV Benadryl. OTC Benadryl..even at high doses wasn't working. They gave him 3 iv bags of benadryl with Toradol and Steroids..didn't touch it. They gave him Propofel..and that worked. We have never in all the years he has had this needed to go to the ER because we can manage it at home. My issue is with the lack of compassion and ignorance the lower level medical staff have about Clusters. When your in a crisis situation and go to the place that is supposed to help you and they kick you when your already down is pathetic!
  4. I have both a husband and daughter that were diagnosed with Episodic Cluster Headaches years ago. I can't tell you the few times i had to take them to the ER (Neurologist was admitting my daughter) and husband because everything we were doing at home wasn't working, and the employees in the ER were clueless when we tell them they are having a cluster headache attack. They dismiss us and tell us to wait our turn. My husband was laying on the ER floor in front of everyone (last night)in an attack screaming in pain and we were told...there are 3 people a head of us looking normal as can be and that we had to wait. Glad he wasn't having a brain aneurysm...he would be dead! Nobody would help us! They were ignorant and absolutely no compassion! I felt like i was in a 3rd world country. Where is the education for Hospital/Medical Employees?!?! When i was pleading for someone to please help him...they gave me an attitude!!! We went to the ER for help...and all we got was complete attitude and avoidance while he was laying on the ER waiting room floor having an attack!!!
  5. Both husband and daughter have episodic cluster headaches. Emgality worked great on her. Husband on the other hand it has not. Very frustrated and disappointed! Yet again let down by another promising medication.
  6. Both my husband and daughter have episodic cluster headaches. My daughter took the 300mg of Emgality and it worked great for her. My husband took 300mgs one month before his cycle starts then again a month later. He was doing better at the start of the cycle and then today had an attack...definitely a 10 + . We were cautiously optimistic this would work...and the viscous beast still found his way back in. The Vitamin D regimine didn't work for him. We were so excited and hopeful about Emgality. Exhausted and Extremely disappointed!
  7. HI. I understand there has been serious effort put forth to get insurance companies to list Oxygen as a medical necessity for CH sufferers and to get them to cover it under their insurance plan. My husband is coming up to his cycle. I just called our health insurance company and Oxygen is still NOT covered. Is subject to our deductible. What is the latest information regarding insurance companies regarding Oxygen??
  8. Thank you all for your feedback. From the responses i got i am not feeling very optimistic anymore. I was very excited when i saw the news release about it. I thought to myself....FINALLY!! I have a husand & daughter that deals with this nightmare. Now, i feel like the bubble has burst yet again.
  9. My husband has had CH for 5+ years. Took 2 years to be "officially" diagnosed. I have done a lot of research on my own because the Neurologist / headache specialist has only presribed Imitrex for him. Hardly mentioned O2. After reviewing Oxygen therapy on this website and what exactly you need to effectively abort an attack....it has (so far) been doing the job. We have the big tanks M90 of O2, and more then two to get us through. We have a 15 lpm regulator and found that what all the research say's that 25 lpm works better at aborting an attack with uninterrupted flow does make a big difference !!!! However, our O2 provider does not provide a 0-25 lpm regulator. So to answer your question....so far the O2 has been doing it's job. We understand what you are going through....it is HELL for a loved one to watch their family member go through this and you feel very helpless. All you want to do is take their pain away and you can't.
  10. Thank you for the links to both Harbor Freight and Amazon. You hit the nail on the head with why we need the higher lpm.... waiting on the bag every time to fill takes much too long when you are in the middle of an attack. Our Oxygen supplier doesn't even carry anything higher then 15 lpm and looked at us like we had two heads when we asked if they had a regulator that went to 25. I really appreciate all the information and resources you have provided ! Without nice people like yourself that understand what it is like to be in ours shoes, we would be shooting in the dark. It is so wonderful to have this website. It has been a huge life saver for us !!!! Nobody understands what is like to have cluster headaches or a family member with it. Trying to explain to my boss at work what CH...she just relates to it as a Migraine. No clue. People think you are exaggerating or it isn't as bad as you say. You feel like nobody understands. If they could come here and watch my husband in an attack...maybe they would think differently. I had to actually tape him going through an attack in order to show my boss what it is like and the magnitude of the pain.
  11. Can someone please tell me where I can order on-line a 0-25 lpm regulator and a demand valve?? I have searched the links listed on this website and was unsucessfull.
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