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Marcelo_11

New here and super happy to be here

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Hello guys I just wanted to say that I’m so very happy to have found this website! Its nice to know that in this very small community of us who share this pain, there is a place for us to chat and help each other. I have been walking hand and hand with the beast for 8 years now, with my first cycle (at age 17) lasting a little over a year. I am 25 years old and am currently in my 3rd cycle and I’m not sure how to say it but this time almost broke me.. the sleeping 2 hours a day with the headaches switching from the right to the left side continuously have if 8 plus headaches a day, the nausea, and the fluctuation of aggression and depression you could say. I don’t mean to bore you all with my post just thought I’d share a bit about myself being as I’m new to the forum. Luckily i found out about cluster busters and I feel relieved to know I’m not alone because no matter how much friends and family try to understand, they will never understand how much it truly hurts us. Thank you all for taking the time to read this. 

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Welcome Marcelo! Very happy that you found us. There is a lot of info to read and absorb. Ask all the questions you want. There is a banner at the top of each section 'New Users - read here first' That will give a great start. 

What meds are you taking and do you have O2 with a non-rebreather mask? High flow? That is the main game changer. And check up on the D3 Regimen. Cheap, easy, and all good for you vitamins. It can lower your pain levels and slow down the ramp up. 

Living on two hours sleep for months will make you feel pretty rotten. :(  Posts are not 'boring' nor are there any stupid questions. 

ATB!

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23 hours ago, spiny said:

Welcome Marcelo! Very happy that you found us. There is a lot of info to read and absorb. Ask all the questions you want. There is a banner at the top of each section 'New Users - read here first' That will give a great start. 

What meds are you taking and do you have O2 with a non-rebreather mask? High flow? That is the main game changer. And check up on the D3 Regimen. Cheap, easy, and all good for you vitamins. It can lower your pain levels and slow down the ramp up. 

Living on two hours sleep for months will make you feel pretty rotten. :(  Posts are not 'boring' nor are there any stupid questions. 

ATB!

Thank you so much I appreciate the d3 recommendation. I’ve been through 2 numerologists and they refuse to give me O2. All I have to fight the beast is Verapamil (2x) A day, lisinopril , and Sumatriptan 100mg. I am currently looking for a nuero that specializes in headaches maybe I’ll have better luck getting O2 or triptan shots. I had to stop taking sumatriptan so much because my body was giving symptoms of a heart attack, but sumatriptan is a double edge sword. The 2 hours of sleep a day is really killing me , I work nights so sleep during the day is a challenge as is, but adding the headaches is just the cherry on top. I have heard that CBD oil and other “drugs” can help with both the pain and ramp up but I don’t have that option my job has me drug tested under federal so that option is a no for me.Thank you For the reassurance I feel less embarrassed about posting on the forums now!

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1 hour ago, Marcelo_11 said:

......looking for a nuero that specializes in headaches maybe I’ll have better luck getting O2 and triptan shots......

...winner winner chicken dinner...............

...welcome aboard...

best

jonathan

Edited by jon019

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3 hours ago, Marcelo_11 said:

I’ve been through 2 numerologists and they refuse to give me O2.

Maybe if you looked at the post I linked you to you already know this, but many people with CH use welding oxygen, which you can get without a prescription, to treat their attacks.  You really, really want O2, and you could have it in a few days by going the welding route.  More detail here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

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The Vitamin D3 Regimen is composed of vitamins!  Nothing to worry about with a drug test at work! Easy and good for you. I strongly suggest that you consider getting started on that right away. Yes, it is best to have blood work prior to see where your vitamin D is at the moment. Then you see how much loading you might want to try. But it is to your advantage to begin taking the vitamins now and get the blood work in a week or two if that is how long you must wait.

Please give it consideration. It will not conflict with your search for a new Neuro either. 

If triptans give you heart symptoms, be sure to let the new Neuro know that! It can be a dangerous drug. Yes, the injections work fast at killing the pain, but only two shots allowed in 24 hours. And insurance usually will pay for 6 to 9 injections per month. So, you have to use them with care and not every day either. We do have a method to break the auto-injector apart to get 2 or 3 doses out of the unit rather than one. However since you experienced heart issues with the pills, I think you might want to avoid any triptans. How often were you taking it in pill form?  

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