Luis

So I went to my neurologist, and he prescribed nortryptiline as a preventative. Has anyone tried it??? I am still taking d3.

@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.

I took my second dose of emgality on Sunday and I developed an allergic reaction. Hives. Honestly guys, I am losing all hope.

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.

I think all of those are cgrp antagonist. They bind to pain receptors and make you not feel the pain of the headache. Emgality supposed to prevent headaches as well.

@kat_92 I have. Melatonin doesn’t work for me. I’ve tried it before. I am now taking medication for my stomach and will resume d3 once my stomach heals.

I don’t think it was the emgality, and since almost nobody is having this problem. I am inclined to say that I was not eating healthier. I will try the d3 again since it was helping me sleep. Once my stomach feels better, I will give it another try splitting the vitamins in the morning, afternoon and evening. I don’t want to give up on it because emgality is expensive and I still feel the headaches there while on emgality only. I will keep y’all posted.

Hi guys, so I started the d3 regimen and it has helped, but I am unable to see the real extent due to emgality still on my system. Anyway, the reason I wanted to post this is because I’ve been having stomach pain after taking d3 and well other spicy foods as well. I am. It sure if all of the supplements “made” my stomach weaker or something, but now I am unable to take the supplements due to fear I get a stomachache. Has anybody encountered this? If so, how did you deal with it?

So I started the d3 regimen 5 days ago. Ever since the I started feeling pins and needles around my body. Sometimes in my arms or legs. Currently it’s on my arms and legs. I think Batch said it was called parenthesia. Has anybody had this happen to them? I am scared to continue with the treatment but I am also scared to stop it. I am in emgality and continue to take the maxalt as an abortive. I saw that one of the side effects of maxalt was parenthesia but I have not felt this until starting the d3 treatment. Any thoughts?

Hello, it’s hard to live with this illness. Especially when you don’t know when it will end. Be strong. Think about things that you live for and that keep you going. That always helps me when I am having an attack. I also moved in with my family for now. I couldn’t handle being in pain and alone. So if you are alone, reach out to someone that you love. Don’t go through this alone. You might also try ginger tea. It’s helping me firs the past two days. Take care of yourself. Be strong.

Yesterday evening I had pasta for dinner and I didn’t feel any headache or shadow or anything. My family decided to get some gelato or sorbet a few hours later. After I ate the sorbet, I developed a pretty bad, although blunted, attack (emgality or d3 working? Idk). Can anybody tell me if I just restarted my cycle or if any of these things are triggers. My cycle usually doesn’t last this long and I’m tired. I hate to think that I am going chronic. Requiring support, please!!!

I’m just curious.. have any of you tried acupuncture? If so, did it work?

My cycle has been ending but they taper off. Same with the beginning of my cycle. Week 2 and some days in week 3 are usually the worst for me.

Day 2 of d3 regimen. Wish me luck guys. I hope this works!!!

Mine started nov. 16th. and are continuing for now.

I am still getting clusters once a day, but the pain is less severe than before taking emgality the first time. I am still using maxalt and haven’t gotten around to get oxygen. My cycle usually lasts a month, but this is the 6th week of the current cycle. And honestly, I’m getting nervous that is not ending. I hope it ends. I’m so tired of going to sleep worried about the pain.

@Brain on fire I haven’t checked but I will definitely check now since I am on break. Emgality is working okay. It has definitely reduced the pain to manageable levels. The only side effect has been some itching but I’m not sure if it’s from emgality or dry skin. I am still using maxalt has an abortive. I think My cycle is ending but I am not sure yet. Oh btw I have ordered the d3 regimen and can’t wait to try it. This has been the last time that I get clusters. From here on out I will peeper has best as I can.

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I am not sure how much it will be. I still haven’t gotten around to sign up for the free 12 month program. I still get 1 headache a day but it’s very manageable.

The md office gave me some samples and they get me a card that is supposed to help me get the medication “for free for 12 months” but I have yet to activate it. I am going to see how that works this week and give you all an update soon.

Ok, so I have my first update. I had a cluster this morning. I could tell cause I could feel the pressure but I didn’t feel the pain or the pain was really, really dampen. I was able to continue sleeping. I mean less pain is a win, but they gotta find the cause and cure it some day.

I’ve had two CT scans in my life due to my clusters and a bunch of X-rays because of dental work and no one has told me that there is a parasite up my nose. I’m not saying OP didn’t have a parasite but maybe that parasite could give him headaches and other symptoms. And from what I’ve read EVERYWHERE they never mentioned a parasite could be the cause. Maybe time proves him right maybe not. I would like to believe that there is a parasite in my nose and taking it out will be the cure for this monster that has put me through so much pain since I was a kid, but the chances of everybody here having parasites in their nose are, well, non-existent.

MD gave me 3 injections of 120 mg to start off and then one every month after that. I just took the second one and he told me to take the last one in the morning. I live in Texas.

Hello!!! Do you think exercising hours before an attack can stop an attack? I work in an office and I probably will not be able to exercise like you are suggesting.

I asked him about the oxygen and he said that it was hard to get. I am going to try to get welders oxygen on my own.