Jump to content

Into Light

Advanced Members
  • Posts

    308
  • Joined

  • Last visited

  • Days Won

    6

Posts posted by Into Light

  1. On 7/22/2019 at 8:07 PM, Jeler said:

    Freud

    That's good to know. NuCara gave me 2 E tanks this past Saturday morning. By Monday at 3AM they were empty. Today I went down to exchange them and they told me they were all out so they gave me 3 D Tanks. What a joke I know.

    Thanks for the info on Apria, I called the local store, that's when they told me they do not service CH patients. ( I damn near blew a gasket)  Tomorrow I will give the corporate office a call and explain to them my situation.

    Thanks for the help and suggestions.

    Jeff

    Corporate Apria are bozos who must be betting on who  takes the longest to answer. Of course they service CH patients. It must say “for Cluster Headaches” on the script. They also carry max regulators at 15lpm. I bought my own 25lpm regulators and have 2 optimasks. 1 goes everywhere I go. I got hit in March, in the luxurious MSKCC waiting room. They brought me a 25lpd e-tank with a taped up non-rebreather, but my optimask is so much better. If the script calls for higher than 15lpm the office refuses delivery. F*Heads.

    IL

  2. 6 hours ago, Freud said:

    Man I’m so sorry!  I was so shocked when I got my oxygen. I didn’t bother to try getting it despite the first moron I saw writing me an incorrect script with none of the necessary info on it. A year later I saw a well respected CH/ HA doc. He just wiped out this form sent it in and they magically showed up. I went to the ER once to try it before I got it and it did work the time I tried it so I asked for it again. Expecting to have to fight tooth and nail to get it. But they just showed up s week later. I thought for sure my insurance company rejected it but they showed up no call or anything. Others have had an uphill battle no matter who they call. Eventually most find a solution. I think @Into Light has a deal for cash pay with Apria in FL. May be he can shed some light on the subject .

    Florida self-pay costs me $80/month for everything...tanks and O2 on request. I did instruct the neuro  on how to write the script.

     

  3. On 5/10/2019 at 12:37 AM, CHfather said:

    Click on this link: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

    Go to the bottom of the sixth page, which is page #2 in the second section.  You'll see a chart there with the ingredients you need to take.  Right under that, at the top of the next page, it shows the specific Kirkland brand supplements you can buy at Costco to get all the ingredients.  If you're not a Costco member, you'll have to figure that part out for yourself, or maybe someone here will tell you where they get theirs.

    I'm surprised you couldn't get 5,000IU or 10,000IU D3 near where you live.  I think most drugstores have at least 5k.  You'll have to find them (there are tons of them at amazon and other online sites) or else you will indeed be taking a lot of pills, particularly if you do the "loading" approach at the beginning, where you take considerably more than 10,000IU per day.  Batch recently mentioned a 50,000IU water-soluble D3 pill that he likes.

    It is something like 95% certain that your D3 is low by medical standards, and very low by the standards of what you need to deal with CH.

    The great people here have lots of experience.  I'm sure they'll help you.  And you might get an online visit to your thread from Batch himself. 

     

     


     
     

    Amazon had everything needed. I am vegan so therefore am looking for plant or supplement delivery of the needed DHA and EPA.batch did say that the fish oil components can be skipped if necessary 

  4. On 5/1/2019 at 1:44 PM, BrainStorm said:

    So, I was cruising the old threads looking for demand valve info, and I thought, shoot I'll just ask everyone what they recommend. I found one without a mask on Ebay for $185. It's a allied healthcare L063-05R. Is that the best price I'm going to find? And I'm wondering how big the quality gap is between the cheaper and "sell an organ for" price range. I'm looking to step up my O2 game. Any and all advice appreciated. 

    I’ve never gone wring spending top dollar for any equipment. It always has been more dependable and the functiional life eventually makes whatever the less expensive alternative. I have not yet researched the demand valve, in spite of having a prescription for it that specifies CH, since I might have gotten on board with functionality from 25LPM.

    just my opinion, developed over years of working as a pioneer in the field of computer illustration, fine art and photography.

    IntoLight

    ignore below, thanks

    On 4/29/2019 at 7:52 PM, jon019 said:

    Image result for e tank cart

     

  5. On 4/29/2019 at 2:10 PM, johncluster said:

    I think he posted it as a curiosity not as a suggestion of an actual cure. It this moment MM and possibly D3 reg, are the only think that help in reduction of CH.

    Google cure for cancer and I am sure 100's of cures comes up ,some with "scientific proof"

    there is some research suggesting that KETOdiet helps in reduction of CH, I don't have any link to it, but there is some girl on YT with CH and some doctor talking about it. maybe somone could comment on it if they do keto diet .

    No matter to me if the KETO diet is helpful; I’m a militant vegan (would make an exception for the Omega-3 oil).

  6. I had to banish sumatriptan totally from my life. 1 shot would stop the headache, but only as side effects ramped up. I would experience increasing nausea. Weakness would become so overwhelming I could not even rest my hands on my chest while lying down. I would pass out. And awaken with no HA, but unable to do anything other than lie on the couch for about 5-7 days; could not think clearly; could not read, certainly could not work for my art business. I couldn't even sketch.

    My doctor switched me to oral rizatriptan, but I don’t take it. I am on 480mg Verapamil/day. Any change from that or missed dosage yields the return of CHs with a vengeance.

    I’m ECH with chronic shadows.

  7. 41 minutes ago, Freud said:

    I ran through a whole M tank before I decided to use one of my precious injections I can’t get any more of. I have noticed the bottom 1/4 of these tanks produces less pressure and that I’m not getting a true 25lpm flow out of them when they get this low. But usually I can still bust with them. Keeping the O2 on made it just barely bareable (like I had an option besides the injection lol) so I just kept it on. I also left my phone upstairs and I usually set a timer so I if i fall asleep when the cluster breaks and I’m in that cool down/rebound preventing stage I don’t waste the tank. Mom had been up and I asked her to tell me when 15 min was up but for some reason she felt like since I was up or she was just frazzled from all the pain I was in she didn’t tell me. All in all it was about an hr I was on the O2 before I took the injection. I’m really hoping it doesn’t happen tonight. 

    Damn

  8. On 4/16/2019 at 3:14 PM, mit12 said:

    To think that I had a doctor tell me that I need to hide the pain from my wife because it upsets her? 

    Doctors, like people, are mere individuals. And, like people, range from brilliant to dumber than a rock.

    • Like 1
  9. On 4/11/2019 at 9:04 PM, johncluster said:

     That is that just insane ,,,,If your pain was that bad you would be screaming non stop and basically commit a suicide after the 2nd time this happened,    many people did , who had to endure this kind of torture as prisoners of war....

    The pain is bad but compering it to gruesome  horror amputations is just insane,  way over the top.

    You would basically fall into a shock from the pain,,,probably lose consciousness,  many times during the CH attack  and after 2-3 events like this, you would probably die from shock  or a heart attack ....

    Suicide rate in CH sufferer would be 100%

    Don't take in personally but , this would not help to in explain  to people what CH pain is.

    My explanation is , imagine a really bad heat stroke where you are almost diying , where you are disoriented , dehydrated, and also having a bad flu and a tooth ache ....and you have to walk or exercise for 3h ,,,that is the closest in my opinion 

     

     

    I just say indescribable pain and leave it at that because it’s indescribable.

  10. Boatman,

    I don’t know how else to describe the experience when I am not in the spring and fall intense ch attacks. I have ongoing 1-2 level pain the rest of the year;  they are often accompanied by the ancillary symptoms of running nose and tearing/drooping eye. All right side. They, as mild as they seem leave me mentally incapacitated even if they stop for a while.. so that’s what I call mild chronic CH with episodic attacks much more painful..

    Right now, my pain level is barely a 1, but my right nostril is running.

    i hope that clarifies. I was wondering if anybody ellse has experienced this.

  11. 7 hours ago, Pebblesthecorgi said:

     Just for the record studies done looking at aborting clusters earning Class A evidence for efficacy were all done at flow rates of 6-12 LPM.  If these flow rates are not effective for an individual then trying higher rates (masks and technique too) is certainly acceptable but if you doc and O2 provider start you with a regulator that can only do 10 LPM don't despair the chances it will work are pretty good.

    Thank you. I have read some of the journal articles. For me, the 15 Lpm gave me about 1/3 of an in-breath before maxing out. I will try the reduction in flow over time.

×
×
  • Create New...