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Into Light

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Posts posted by Into Light


  1. thanks @Tony Only , i’m very sure i busted the ch on my third dose. issue is multiple comorbidities with similar symptom set: chemo, new chemo, newly diagnosed sleep apnea, head trauma in dallas and, temporarily, prednisone withdrawal after gout attack.

    i’m grateful that it’s obvious i busted the ch.

    lux


  2. On 4/20/2020 at 6:20 AM, Tony Only said:

    Oh, absolutely, please do if you can do that ! :rolleyes:

    chemo brain

    tbi

     intuition chiemo brain fog

     

     and getting slammed without a current medicine source

     what was i going to do?


  3. On 3/8/2020 at 2:15 PM, CHfather said:

    Splitting injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/   Or, ask for a prescription for vials and syringes so you can measure out your own dose.

    There's a lot of caffeine in energy shots (the smaller things like 5-Hour Energy).  Not as much in the standard bigger drinks (RedBull).  You would probably do fine just brewing some coffee and keeping it in the fridge.

    my neuro says vials no longer available. another option iszembrace...3mg sumatriptan sub-cu. i can’t stand that drug. have a ton of em lying around...


  4. ps rx must be written oxygen 15Lpm for Cluster Headache with the diagnosis code. If the doctor writes higher lpm than 15, and the delivery company has no regulators other than 15lpm (which more than mine don't I rexpect), you may experience, as I did, a refusal to deliver. Just take the 15 lpm rx, then get your own WT Farley regulator. Mine goes to 25 lpm and i need to start with that flow rate and then reduce it to where it keeps the 3-liter Optimask reservoir bag filled.

    WT Farley – steel and brass. I think I got mine on Amazon though you can use their website.

    • Like 1

  5. On 4/6/2020 at 11:34 AM, graci said:

    I just called my neurologist, and he was hesitant to send a prescription for O2 but he said he will send it. He said he wasn't sure that it was cluster headache, but agreed that it didn't hurt to try. He told me that the insurance might not cover it, so I am waiting to see how mucht the cost will be.

    Depends on where you are probably. Im in FL and self-pay Apria $79/month unlimited refills. Make friends with your delivery guy...s/he will be the lifesaver.

    • Like 2

  6. 27 minutes ago, graci said:

    Thank you so much CHfather. Your post is so helpful. I think going medical route will be the best option for me. 

    I don't even know that I have CH and don't know if O2 would help so was asking so many questions about the cost. I wish I could just try it out in a doctor's office or something. 

    Into Light - I don't have medicare, but it is good to know, because I can be sure that if medicare covers it then my insurance will cover it too!!

    hi @graci,

    medicare has only just started to pay for O2. Part of the covid-19 responses. previously they did not. I am trying to get the  bills submitted to the feds rather than continue to self-pay, which was not an egregious amount until the pandemic laid waste to my art nusiness.

    i recommend that you check your policy.

    lux


  7. On 4/6/2020 at 11:09 AM, Batch said:

    These above supplements have been part of the anti-inflammatory regimen since 2017 although it includes a different salt of magnesium. The Methyl Folate + (B complex) replaced the vitamin B 50/100 complex.  It is formulated the methylated forms of the B vitamins.  These methyated forms of the B vitamins have a higher level of bioactivity and bioequivalence than the non-methylated forms.  I also added the CoQ10 for migraineurs in 2017.  A few chronic CHers have reported starting the CoQ10 helped them progress to a CH pain free state. The Turmeric (Curcumin) is a potent anti-inflammatory that aids in preventing CH and MH.

    blKqmZv.jpgjCzVC8s.jpg

    The following four supplements are catch-all choices for CHers and Migraineurs who suspect they have a polymorphism of the VDR gene that severely limits a vitamin D3 response or a methylenetetrahydrofolate reductase (MTHFR) deficiency   Without the VDR protein, the genetically active vitamin D3 metabolite 1,25(OH)2D3 cannot attach to target genes to initiate the genetic expression that down-regulates CGRP, SP, VIP and PACAP neuropeptides responsible for neurogenic inflammation and the pain we know as CH.  Resveratrol and Quercetin have demonstrated the capacity to up-regulate VDR gene expression.  The 3 mg Boron down-regulates 24-Hydroxylase, the enzyme that adds a hydroxyl group to the 24th position on the vitamin D3 molecule.  When 24-hydroxylation takes place, these vitamin D3 molecules are catabolized (broken down) and passed over the side in urine reducing serum vitamin D3 and 25(OH)D3 concentrations effectively lowering the headache preventative effect.

    The probiotic helps repopulate and optimize the friendly colonies of bacteria living in the GI tract called the microbiome.  The microbiome plays large roles in digestion, immune functions and in reducing the histamine response to some allergens.

    4b9WWzB.jpg

    If you add zinc picolinate to the above, you come very close to the following supplements suggested by the Riordan Clinic to staff and patients as an immune boosting strategy to help prevent a COVID-19 infection by the SARS-CoV-2 virus.

    1. Vitamin C: 1,000-2,000 mg, 3-4 times a day (to bowel tolerance)
    2. Vitamin D3/K2: 1,000 IU, twice daily
    3. Vitamin A: 10,000 IU, per day
    4. Zinc Picolinate: 30 mg, twice daily with food
    5. Selenium: 200 mcg, 1-2x daily with food

    (Note: please implement BEFORE getting ill if possible.)

    See following link for details.

    https://riordanclinic.org/2020/03/covid-19/

    Take care,

    V/R, Batch

     

    Don't hijack my thread to COVID links.

    • Thanks 1

  8. 15 hours ago, igdc said:

    With a bit of research, EBM Medical appears to be a MLM program for healthcare providers. Here's the company explaining how selling their products to patients will up the revenue to one's practice: https://ebmmedicalacademy.com/p/building-practice-revenue1 Curing everything under the sun. And "medical foods" in the form of capsules? That's very iffy, with little science to back it up. FDA does not regulate it (just monitors) so you would be taking whatever gunk someone decides to mush into a capsule. (Note, too, that this EBM site is cash-only, no insurance... in part bc most insurance won't cover such things).

    Thank you @igdc. My "bullshit-meter" is very sensitive, but I do like to get input from my family here before making final decisions. I will just say, "No thank you."


  9. A neurologist in Bradenton, FL" has recommended the following formulary for me as a CHead. All the literature and the head of information at the company said there were no trials for CH

    Does anyone have any information on this. I don't want to take another thing.

    EBM MEDICAL 
    Formulary for: EB-H4

    EB-H4 ACTIVE INGREDIENTS:

    •    Riboflavin…400mg (Active B2)
    •    Coenzyme Q10…100mg (CoQ10)
    •    L-methylfolate Ca…400mcg (Active Folate)
    •    Magnesium Bisglycinate…350mg

    EBM Medical Contact Information
    EBMmedical.com
    Phone: 636-614-3152
    Email: support@EBMmedical.com
     

    image.png.e2efd9abf6d1ed5cea0eb336a159d5bc.png

    @BostonHeadacheDoc @Pebblesthecorgi @Brain on fire @spiny @CHfather


  10. i don't try to abort with strength training, but i will go work out up through kip5. the pain goes away nearly immediately. and returns when i exit the gym. 

    all the same, all different

     

     il


  11. On 11/30/2019 at 8:49 PM, jon019 said:

    ...hmmm...well OK....but I just watched Auburn beat Alabama 48-45....and I could watch 'bama lose every day of the week.....bless me father for I have sinned?

    is that the funny oblong ball?

    • Haha 1

  12. On 11/9/2019 at 1:20 PM, Brain on fire said:

    Agree with @jon019 I'll add... As the Kings,Queens, Princes & Princesses of pain, we don't need a reality show.

    agree. but then i watch no television at all. noxious tool of the devil. 


  13. On 11/2/2019 at 2:50 PM, CHfather said:

    Karen, he needs to get oxygen.  Without insurance, that probably means welding oxygen.  (He could get a prescription for medical O2 if he sees a doctor and then try to pay for it out of pocket.)  Here's info about the welding route: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/     O2 is really the highest priority, and he/you should move heaven and earth to make it happen.  A welding-based system can be created in a matter of a few days.

    If espresso helps, an energy shot such as 5-Hour Energy will be even better.  Much more caffeine in it, and some other ingredients that are believed to also help.

    The D3 regimen won't solve his problem right now, but he should start it right now.  The whole thing.

    If the sumatriptan was in pill form, then no, it's not gonna help.  Injectable sumatriptan, or the triptan nasal spray will usually stop attacks.

    He should consider ordering some rivea corymbose seeds for busting. Legal to buy and possess. This file includes basic information about busting (the reason this site exists) and a whole bunch of other non-busting stuff.  Throwing things at it like he's doing now is not a sound approach -- particularly considering the things that are being thrown.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    Bless you for being there!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I am a supporter myself, so I have this advice -- Don't let him talk you out of doing whatever you are willing to do to change this situation.  Sometimes people with CH won't accept help in the way they should.  Lots of understandable reasons why that sometimes happens, not really worth discussing here.  You have to persist.  I'm not talking about during an attack -- you have to listen to what he wants then, agonizing though it is.  But in terms of getting what he needs, whether that's O2 or vitamins or even seeds, you don't need to have permission.  In my opinion.

    information: tranceplants.net will not ship to florida.


  14. On 11/6/2019 at 2:21 PM, CHfather said:

    yme (great handle!), I'm very sorry that O2 doesn't work for you, and I am assuming you have tried all the upgrades (higher flow, better mask, different breathing technique, etc.) that have turned that situation around for some people.  I'm imagining that means you have to use triptans to abort attacks, and I just wanted to be sure you know about splitting Trex injections to use less with each one.  There's a file about it here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Or some people get it in vials with syringes so they can measure out their own doses.  Sorry if this is old news to you, but thought it was worth mentioning.  Same with busting (the blue "New Users..." banner at the top of each page). I'd feel remiss if I didn't mention it, but you might already know about it.

    according to my neurologist, who tried to prescribe the vials. and they are no l longer available. i get zembrace which is 3 mg subcutaneous. haven't  used it. 

    • Like 1

  15. On 11/2/2019 at 11:28 AM, spikeinthehead said:

    Hello and thank you for the “ greetings”. Actually this is a note from his fiancé Karen .   I am terribly worried about him and of course feel so helpless. I’ve been reading this website for the past few weeks for any information to help him.
    Briefly - he is 51 and started these in 2017 thinking mabe he had a bad sinus infection - went to dr. Who prescribed antibiotics which of course did not help.  These came on during the night - every night ( almost ) for close to 6 weeks or more.  Finally given sumatriptan and topiramate which really did not do too much except make him feel “ out of it “ .   Butalbital actually seemed to help more than anything , if taken at onset.

    Did not have any headaches in 2018 now they have come back - approx. 5 weeks ago and with a vengeance.  Every day/ night - he gets the sensation in his teeth and right away it hits - too often it goes into a full blown attack , where pain is so intense he can not sit still or bear to be touched and he literally can not stand it ( I know you all are well aware of how he feels )  These last a few hours - we’ve tried everything. Butabital, tension  headache aspirin- espresso  ( just started which perhaps helps a bit) - Valium when he’s so agitated and can’t sleep after al the pain ( this usually can help him sleep some )——- trying the different vitamins  and melatonin ( think this may help a small bit )  - this is all left sided with the droopy eye , congestion, shadows ....Please excuse this long drawn out post —- I am so worried and anxious — he is extremely depressed at this point - he never knows when they will come and therefore is afraid to go to work in case one hits , no way he can drive with it.  We don’t know what to do —— I am writing because he feels hopeless and really won’t look at this site and I am looking anywhere for help and sick with worry ————- thank you for “ listening” 

    Karen 

     

     

     

     

    karen, 

    i'll be back wednesday. oral sumatriptan is worthless. takes an hour to kick in. the sbucu injectors are the best emergency relief. if there hasn't been an abort via o2 which is the best. after he gets the o2 script i already sent a link to the correct o2 mask for us. get two. he will, hopefully sooner than later, have Mtank(s) at home and he can do what many of us do and keep an Etank on the car.

    5-hour energy drinks are reputed to work much better than espresso.

    hang in there. this is an amazing support group. one of a kind. with cluster knowledge in aggregate that far surpasses the information that almost any other doctor or neurologist has.

    into light


  16. 25 minutes ago, CHfather said:

    Thanks for this info, ITL!!   Can you get spike' moving fast on this?  Could he see your doc who wrote you the O2 prescription?  As you know, every day without O2 is a day of needless suffering.

    my neuro is at sloan-kettering memorial cancer center. luckily for me he has followed my lead, as i have learned here what i need to communicate to him. i stick there because i am covered by the WTC Health Fund, so pay nothing to go there.  which is good, but lymphomas are not.

    i believe there is a cb approved neuro in venice, which is very close to us. i have sent my very dear friend the exact wording for the script. 

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