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Everything posted by Luis

  1. Luis

    Eye pain

    Never mind guys! I have an eye infection. I was freaking out cause the pain was on my left eye which is my cluster side. Scared the crap out of me.
  2. Luis

    Eye pain

    Hi guys, have you ever had eye pain, light sensitivity, and reddening of the eye without the pain? I’ve never had any of these with my clusters so I am not sure if my clusters are changing or if I have an eye infection.
  3. You may want to DM, Batch. He’s the one that created the regimen. His user name is “xxx” @xxx
  4. @CHfather this is exactly what I was thinking. He’s gonna be like “it ain’t me, fool!”
  5. Hi, has he tried to change his diet at all? Like not eating histamine heavy foods? See if that makes a difference?
  6. . Hi guys, it’s been a while since I’ve posted. Although, i read most of the posts. After a year and a half of beating the beast it finally caught up with me last month. It’s been 5 days since my last headache, with everything that I learned here, I managed to keep my headaches to 1 a day just a few minutes at a time. Oxygen is freaking amazing. The headaches that I did have were able to be taken out by oxygen with in a few minutes. So it’s been better since my worse cycle in 2019. anyway, like the title says, I am not feeling my best. Although the pain has gone, my residual symptoms still linger. I’m super dizzy and feel like I wanna vomit. Every light bothers me. I just feel…. Hopeless…even though I managed to suppress the pain…I just don’t wanna live like this my entire life….not that I am suicidal or anything…. The pressure in my head is a constant reminder that my clusters are always there. anyway guys. Hope you are doing well and pain free
  7. Luis

    D3 regimen

    @trjonas hi yes it works. It lessens the headaches. I am also taking anti-histamine, have changed my diet, and have oxygen. So it’s manageable now.
  8. Happy New Years y’all! I hope you guys are having pain free days. I am happy to report that for the second time in my life, I’ve managed to keep the beast somewhat controlled. may this year come with tons and tons of pain free days for everybody. Also, may this year be the year that I get to go to the conference!! love all of you beast fighters out there.
  9. Hello! i managed to control my cycle with exercise. Cardio. So it works to abort and control not as a trigger.
  10. Hi guys, looks like my cycle started. I feel horrible. I really don’t wanna go through this again guys. I don’t wanna be in pain. Not suicidal or anything I am just tired of this.
  11. Dr. Burish is my neurologist and he told me that you guys were working in something a long time ago. I wish I could help. Unfortunately or fortunately my headaches are controlled by vitamin d so far and I am too much of a scaredy-cat to leave the vitamins. Hopefully everything comes out well in the study.
  12. Is there any way that I can watch the presentations at a later time or date? I would like to attend but can’t do to work. I am willing to pay the conference fee to see the videos when it’s a little more convenient for me.
  13. Thank y’all for the recommendations. I will talk with my doctor.
  14. Hey guys, so I can’t sleep cause I have so many things to worry about. But I figured that you guys could maybe help me with one thing. I am going to am going to have surgery to take my wisdom teeth out, and I am pretty scared that the surgery will trigger my headaches again. Has any body have any experience with this? Any recommendations? I have had dental work done before and it has never triggered my headaches not even when one dumbass dentist hit my trigeminal nerve while sedating me.
  15. @jon019 I take Benadryl twice a day. Morning and night. @dmlonghorn yeah, man. My head is feeling like shit. No actual pain, yet and I hope it never comes but the other symptoms are killing me. I get dizzy, I feel pressure in my head, so yeah I hate it that we have to go through this! @devonrex this has been the first time that the beast tries to go out during this time of the year, but like I learned here, the beast changes. So idk, just hoping for the best. The good thing is that I am ready with oxygen and pain meds if it gets to that. But for now the Vitamin D protocol is helping. Oh and sugar seems to be a biggy for me too. Which is odd.. WHICH ALL OF YALL PF DAYS!!!
  16. Any pf days are good days!!!! Hang in there!!!!!
  17. Well guys, the beast wants to fight it’s way back. I have been shadowing all weekend and my head feels like it’s on cycle.. so..yeah. I am pretty scared but I am fighting it with everything that I’ve learned here so hopefully I can put the beast in it’s cage.
  18. Hi... stupid suggestion... but have you tried to take sugar out of your diet? I have noticed it that, if my intake of sugar is high, my brain will want to restart my headaches..you know, shadows and what-not. Also, ginger tea helped in my last cycle. Hope this helps. Wishing you PF days!!!
  19. Luis

    Oxygen help

    I GOT THE OXYGEN!!!!! E tank. I already ordered the mask and will order the regulator. Thankfully, the vitamin d is keeping my clusters away. But it’s been some good days guys!!!
  20. Luis

    Oxygen help

    So, I am finally going to get the oxygen this weekend!!!!! I need the tank and what else?? Can somebody help me with the things that I need please.
  21. Luis


    Im am quite scared of it too since I know clusters are triggered by a low serotonin. So I really don’t want to mess with my serotonin levels but I am not sure if it’s going to help me. I got him to prescribe oxygen, but that was more of me saying “hey I need the oxygen.” well I can’t take psychedelics. So that is out of the question. Unfortunately. I may end up switching neurologist.
  22. So I went to my neurologist, and he prescribed nortryptiline as a preventative. Has anyone tried it??? I am still taking d3.
  23. @Brain on fire no, not yet. I will see my neurologist on the 5th and I’m probably going to force him to prescribe it since I don’t have any other choice anymore.
  24. I took my second dose of emgality on Sunday and I developed an allergic reaction. Hives. Honestly guys, I am losing all hope.
  25. Luis


    My neurologist gave me samples and told me to take 1 injection of 120 mg every 8 hours,I think. The website says that the first dose for clusters is 3 100 mg injections given back to back. From what I know emgality is not a triptan so it doesn’t bind to the same serotonin receptors as triptans and busting methods. Emgality binds to the cgrp pain receptors so that people don’t feel the pain of the headache. That is exactly what happens in my case. I cannot feel the pain of the headache but I can still feel when I’m having a headache. I feel the pressure, light sensitivity and dry mouth. I am still on cycle because I can feel the headaches but again not the pain. My second injection would be this coming Sunday. I hope my cycle ends soon but emgality is working. At least I can go to work and function.
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