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Cloudy last won the day on November 16 2017

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  1. i think that marissa chang in santa monica is definitely worth visiting to see if she can help you. But lets face it most of the doctors can't help us...we have to help ourselves with oxygen, vitamin d, busting and figuring out our triggers. She has experimented and definitely can short term break cycles though nerve injections, lidocaine drips and have you try the latest meds but for most of us that is not going to break it for more than a few days. I appreciate that she is willing to try anything but through 3 cycles over 10 years the most i get is short term relief, a caring person to discuss the issue and a readiness to fight for me with insurance companies on meds and oxygen
  2. i agree with xBoss... i am usually 3-4 years between cycles and then have 4-6 month cycles with an average of 2-4 a day for the cycle it has been that way for about 8 cycles over the last 30 years ..the first month is not too bad from a number per day but then the next 2-3 months are closer to 4 a day. follow all the instructions about oxygen and vitamin d etc that you can find on the site and realize eventually that it will end
  3. Cloudy


    i have had success asking the flight attendant to provide me with the emergency oxygen that they carry on board and just tell them it is for a neurological condition ...you have to have your own regulator and mask though to make it work
  4. Cloudy


    like many of you (i suspect) at the end of a cycle we are looking forward to our first drink. what are people's experience of having that first drink too early...is it just a single cluster attack or has it triggered a new round of attacks ? what are your general rule of thumb for the amount of time from your last attack to the first drink (and do shadows count?) appreciate your responses
  5. sorry that you feel that way and i really think that there is something that when you are in a cycle you are not in PTSD but ATSD (acute trauma)...it's happening in real time to you and there is nothing post about it. It does take me a few weeks post cycle (mine go on 3-5 months every 3 years) to feel like myself , mostly because you have been under attack and there is a real need to get out from under the shock of it. Therapy is something that works for me to discuss those feelings as your friends can't understand it. and whether its busting or a short treatment of a mild sleep/anti depressant like a trazodone or meditation its about letting yourself heal and recovery and being kind to yourself after the trauma wishing you good feelings
  6. Cloudy

    june 24

    i just wanted to say thank you to everyone who participated in the conference i learned alot and it was nice to meet other clusterheads one thing that i thought was very odd is that the 2 people that i met in a chat room and i all started our cluster cycles on June 24....summer start? pollution from the fires? i have no idea but a very weird coincidence
  7. Cloudy


    i have done the vyepti and it did not do anything for me but neither has the vitamin d regiment (following all instructions)...i have no doubt it works for others but i seem to not respond to it and i think it has made me very irregular previous cycle seemed to be affected by mm but not this cycle...i am going to try RC seeds but had to fly to a wedding so i had to start immitrex as i had no access to oxygen and caffine alone is not enough so i need to get back off immitrex first ...having 4 or 5 a day which i have had over the last month is not conducive to just caffeine as a defense i may try a sphenopalatine block have not decided yet but open to any feedback on it
  8. Cloudy


    thank you Batch...i have been on the D3 regimen for years and it hasn't stopped my every 3-4 year episodic cluster cycle but of course it may have reduced it ...i am hopeful that it will kick in ...emagaility seems to have helped this cycle in reducing the intensity...i havent gotten over a 5 and oxygen has helped each time i haven't done the mouse genes yet! will let you know if i do
  9. Cloudy


    has anyone had any success with these infusions....my very out there neurologist has suggested that it is the same as emagility but on hyperdrive and before i commit to the time and the cost ($2,000) i would love to get your feedback
  10. wishing well medical in santa monica is excellent
  11. hello everyone, i have not posted in a while. i am an episodic cluster suffer and usually get a 6 month cycle every 3-4 years (i am 60) and have been getting them since i was 30 (i should note i am on the D3 regiment for years and i have upped the D3 over the last month). my last cycle 4 years ago was probably the worst one ever and i tried everything from ketamine treatments, ocular nerve blocks, iv drips in the doctor's office and finally busting which i believe helped to break it (along with getting off immitrex and using redbull and oxygen more aggressively) after a long 6 months (and on average 2-3 a day that if not aborted last 3-4 hours). I have heard the urban myth about aging out of them and thought i was done with the clusters but they returned about 5 weeks ago but in a different way. Alcohol was always a good indicator that i was back in a cycle as i would be able to drink when not in and as soon as i was back in the alcohol would let me know. this time i had a few drinks and almost 2 hours later the familiar pains came but they were only a 3 instead of the usual 10. i knocked it out with the oxygen and didn't touch any alcohol for another few weeks and surprisingly no clusters (usually when i get 1 the rest follow fast and furious) so i had a glass of wine ...same thing a few hours later the cluster (also a 3) and quickly dispatched with oxygen and once again yesterday. its weird for me to only be alcohol sensitive and not get them at other times ...i have busted 5x during the month and i am not sure if it has helped or whether i am in a different type of cycle. Needless to say i will be off alcohol for a few months now before trying again but wanted to know if anyone has any similar experiences or suggestions thank you and hope everyone has a pain free day
  12. Cloudy


    i have been told that you need not stop emgality for busting by my neurologist.
  13. i am also an episodic every 2.5-3.5 year suffer (although mine can be 3x a day for 4-6 months...what i have found is the more immitrex you use the more the clusters come at random times and since i stopped using it (and switched to oxygen, red bull and busting )in my last 2 cycles i have found them to be more regular (at night and then in the afternoon) so if you are using immitrex that might be the reason.
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