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Showing content with the highest reputation on 09/13/2019 in all areas

  1. 5 points
    Clusters do not cause any known physical damage. Of course each clusterhead has their own personal hell of psychic damage which could range from mild depression to defiance to PTSD-like manifestations. Mental health challenges can cause legitimate physical problems. The other issue becomes imaginary thinking. We spend lots of time trying to figure these things out (triggers, weather, meds, habits, etc. its easy to try and explain every anomaly we experience in the context of clusters but its often unrelated.
  2. 2 points
    Joshua

    Emgality for episodic

    Hello everyone, I thought I'd throw my .02 cents in re: Emgality. I've been episodic since I've been 18 years old, I'm 45 now. The episodic cluster dose as noted above is 3 injections monthly until cycle ends. Yesterday I took my second round of 3. My cycle started mid summer in earnest and I was up to 5 cluster headaches a day. Verapamil and the usual prevents prevents weren't working, and although my D3 level was normal, the regimen wasn't helping this time around (it had in the past). So I started Emgality on 8/15 and my 5 a day went down to about 2 a day, then skipped days, and as of today I've been about 7 days PF. So, Emgality YAY! - or maybe not? The question I"m asking myself is whether this is due to the drug or the seasonal change towards Autumn. The PF days started just as the weather started to get cool where I am. Either way, I'm happy to not be getting any more attacks, and I took another monthly dose yesterday just for insurance. If I remain PF, I may see what happens mid-October and see if I get get off meds. This site and CH.com have been lifesavers for me in some pretty dark times, thanks to everyone who posts here. Joshua
  3. 2 points
    Freud

    Emgality for episodic

    Um, He couldn’t state enough how he thinks the conference is going to be life changing for me and every CH patient especially CCH. Should attend at least once. He thought I have been dealing w CCH a longer than 2 years and said “Oh man, you’re still new at this.” He stayed several times he would like to spend time with me st the conference and talk more. He said he has several veterans he wants me to meet and would introduce me. He mentioned a few of you guys. He said although the emgality data wasn’t that good for CCH he does have a few patients that have responded. And not just w reduction of CCH. He said “home runs” like he hopes for me. He wants to get me back to work ASAP. He was very supportive of @Batch‘s work and told me to keep following his lead. Don’t wait keep busting. Don’t wait on emgality, start it now. It takes some time to get. Insurance rejects it, he appeals, they reject again, he contacts Lilly and gets me in some kind of free program. I don’t have to do a thing but wait my old doc didn’t know or do any of that. Just wrote the script (the wrong one I might add(I never tried to fill it)). He is concerned about me making it to Dallas on a plane. Offered me prednisone to start before I go. I told him they didn’t do a thing for me the first time I tried them and with a couple of board members having hips done recently I’d pass. My plan is to use the max amount of trex I can a day (4 zembrace) if needed and pay for it later... especially on the plane. But my friend who came with me told him “he’s tough as nails and wouldn’t have a problem. I would get there fine.” I drive during kip 8-10s. I try and not drive w 10s. But some times it happens. I keep a M tank in my cars. Some times it works some times it doesn’t. My first CH was a 3 hr kip 10 30 min into a 3.5 hr drive... it’s not for everyone and not too many people have had 25% burns... I just have to maintain some kind of life... I can’t operate/ work with one but I’m thinking about switching to the dark side for a while and doing something in industry... have to give this D more time to kick in but if all I have is some kip 4/5s and I can get a little more sleep than I have been I could do an industry job. Think thats basically it... i forgot to ask how long it might take to see results w emgality. Will find out in Dallas when we talk again. Unlike most docs he wants to leave my f/u appointment up in the air and corresponding with him him sending him updates would be more than sufficient for now. He can refill my ketamine electronically as well as the emgality when I get it... fyi to anyone getting ketamine nasal spray. Price varies a lot. I’ve been quoted $225 for the full script as well as 60$. It’s a slimey world out there. One place said “it would be cheaper for you to get it off the street!” I just hung up I will make a post about my early experience w the ketamine from strength of script, what you need to have your doctor order as well as how it helps me and all it entails... sorry to hijack this thread but I don’t want to make a post titled my appointment w dr... just seems strange to me
  4. 1 point
    ...oops...forgot to mention...for those of you fortunate souls who will be conferencing...absolutely do not forget your mask and regulator (been there!...so did the redneck bag...read up on that just in case)...do NOT check in your bag (sometimes I think the airlines lose stuff just for fun)..and be prepared to explain "WHAT'S THIS!?" when TSA spots these items in your carry-on x-ray. The ONLY time I ever got stopped and questioned in a screening check...…………..they were cool when I explained.
  5. 1 point
    Yo Ken...for future reference....I regularly travelled while in cycle and either had O2 delivered to hotel or picked up from shop myself...CA, NV, OK...same price same great service as home. I used Lincare…. but noted from website that Apria has same/similar program. They ask for 30 day notice... Best Jonathan
  6. 1 point
    Hey Ken! Just bring your mask and E tank regulator.....clusterbusters will have O2 cylinders available to check out and take to your room! DD
  7. 1 point
    @Dana129 I wish you didn't worry so much. My chronic cluster headaches began without warning. Three every night, all kip 10s. When I saw the videos, I was in auch a state of denial 'not me'. Well it was me that accidentally shoved my head through the wall, bruised my body terribly but didn't notice till the next day etc. I had the 'fear' of attacks only briefly because they were coming & I had nothing to stop them back then, fear soon became pointless. Look at me now, pain free sleeping through most nights. I still have Complex Chronic PTSD (unrelated to cluster headaches) and the treatment is helping that too. See? Hope is all over this forum! Edited to add: If they ever return, I know how to stop them.
  8. 1 point
    Clusterbusters will have O2 available Ken! I'll be looking forward to meeting you! This will be my 5th! It's an experience you'll never forget!! Dallas Denny
  9. 1 point
    This will be my first conference and the farthest traveling from home since I discovered the huge help oxygen is. Has anyone had good/bad experiences trying to get oxygen (I go through Apria) while traveling?
  10. 1 point
    Woo Hoo!! Sittin on ready and rockin on go BOF!!! Looking forward to seeing old friends again and making many new ones!! Looks like there's gonna be a lot of 1st timers!! As she stated above, if not this year then start making plans to make it happen next year.....the experience of a lifetime for a clusterhead and something you'll never forget!! DD
  11. 1 point
    Conference starts in less than 2 weeks! If you've never been & can go please do!
  12. 1 point
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    Yes it appears that the B1 is no longer suppressing my cch, still finding pain levels are lower with D3. I’m not sure why B 1 stopped working. There is nothing I can think of that has changed in myself or my environment. I am going to take a break from B1 for 4 weeks and let it leave my system and try again, this time frame is just easier for me to remember, no science behind it. CH has a way of being a challenge and seems to always change and morph around what ever I throw at it. Peace and my you find pain free days.
  13. 1 point
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    Batch thank you, 20 K of d3 seems to be my daily dose needed, still taking b1. The last few weeks my cch has been suppressed. Enjoying life and learning to smile again, I couldn’t have done it without this place. Hope your days are pain free, peace.
  14. 1 point
    razorPP

    B1 ORAL HIGH-DOSE THIAMINE

    something new for me is a deep sleep, also changing my dose to one dose of B1 400mg am and see someone on facebook emailed Dr. Constantini and asked these questions: Q1- Was your healed patient taking any other vitamine supplement1 (Omega3, D1, Magnesium and adult multi-vitamin, etc.)? A1: The patient didn't take any supplement Q2- Are you aware of cases where the B1 treatment isn’t working? A2: We only have three cases in treatment and they are responding. We also have 10 cases of chronic migraine and episodic migraine and all responded wonderfully to our therapy, with the complete remission of the symptoms. Q3- Do you have another future experiment planned with B1 and CH? A3: We will continue treating the cases which we visit in the next future Q4: For episodics like me, do you think I should start in between sycles or just wait for a cycle to start? A4: For episodics like yours, I'd suggest you to take the therapy when you have the first attack, with 500 mg in an only administration in the morning. Q5 Since vitamine B6 is linked to the Dopaminergic Systems functions, was vitamine B6 examined by your research? Was vitamine B12 examined as well? A5 We didn't examine B6 nor B12. Q6: Would you recommand taking 3 doses during the day of B1 or one a day? A6: We recommend to take the total dose all together in the morning at breakfast. Bruce He sent me these as well as all cases where Dr. Constantini treated diseases with huge intakes of B1 to treat MS, Fybromialgia and Parkinson; all so called auto-immune diseases..
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