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FunTimes

How was your weekend?

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So sorry to read this.  Hoping for better times soon.  Crazy weather patterns in some places have definitely been affecting some people.

Any chance that you ate something with MSG in it on Friday or over the weekend? 

Edited by CHfather

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FunTimes,

Have you had a recent lab test of your serum 25(OH)D?  Off hand, I suspect you're experiencing a CGRP cascade.  Calcitonin Gene-Related Peptide, and its nasty peptide cousin, Substance P (SP), are responsible for the neurogenic inflammation and terrible pain we know as CH.  

During a CGRP cascade, the CGRP and SP generated during the pain phase of CH triggers mast cells to release histamine.  The histamine, in turn, triggers neurons in the trigeminal ganglia to release even more CGRP and SP.  This creates a circular biochemical chain reaction causing a flood or cascade of CGRP.  When that happens, CH frequency goes through the roof and none of the Standards of Care Recommended CH interventions work... 

A good first-generation antihistamine like Benadryl (Diphenhydramine HCL), at 25 mg every four hours for  a week to 10 days might do the trick.  A change in diet to the Atkins or ketogenic diet with no sugars, carbs or wheat products can help.  These diets work best when started with a 24 to 36 hour fast drinking only water... 2.5 liters/day.

If you're not taking vitamin B2 (riboflavin), starting it has helped CHers and migraineurs.  Most migraineurs start at 100 mg/day B2 and titrate the dose up to 400 mg/day.

Take care and please keep us posted.

V/R, Batch

Edited by Batch

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A few things that can be the cause of this. I did take the month of December off from busting and the weather is a little goofy in this part of the country. I also took a few days off of Verapamil, it is only 120 a day but now I know it does make a difference.  I am ordering the blood test today and hope I can get that done this week some time. I did bust on Saturday and things seem a little better today so i am keeping my fingers crossed. 

I do not recall eating anything with MSG over the weekend, I did not eat anything other then the MM on Saturday and Friday was a normal day for me with sleep and diet. I think it was just a matter of time that I got a reality check and took a beating. 

Now that things calmed down a little it is nice to know I can still take a ass kicking and make it out alive. It was a dark weekend but I did make it through. I owe my wife a steak dinner after this weekend that is for sure. 

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Hello Funtimes,

Hope you will have better painfree times ahead but anyway you are not alone !

Last month has been more or less a disaster for me. Since 1 December I had only 15 reasonable days but luckily not so many attacks (only 16 divided over 7 days) and not so intense (except 3 I got at night). However that is what I think about them as I never seem to remember anything of them. Strangely they are getting erased from my memory and when my wife sometimes tell me how intense it looked, I usually respond with "it wasn't too bad". But most of the misery were these strong migraine like shadows with regular short exacerbations that never seem to end. Went through ~12000 liters of oxygen and 4 Zomig pills last month. It's good the oxygen is there otherwise it could get much worse. As my symptoms have some overlap with hemicrania continua, I finally got on the indomethacin for a week but apart from a painful stomach, it had zero effect.

As I have not gotten a clean break of more than 2 weeks since begin 2017 I start to suspect my pattern is chronic but rather a mild chronic (1 day/5 attacks per month min and 5 days/20 attacks per month maximum). Majority of the discomfort are nearly non-stop level 3-4 shadows with short 10 min exacerbations. So these are some new questions I have for the headache experts when I see them in February :)

And as things usually get worse after 21 March, I fear a bit for the reminder of the year but no matter, things are what they are and we need to try to make the best of it every day again, no matter how bad it gets :)

All the best !

siegfried

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Hope it all improves for you Fun times, I been having some "funtimes" of my own aswell particularly on monday.

I ran out of oxygen Monday morning and I got a attack at 9am I through everything I had at it, OTC stuff I have at home a energy drink followed by coffee, Ice on the head, hot and cold shower it all did nothing, after a hour and a half of level 7 pain  it ramped up to a level 9 and I caved in to using a rizatriptan, haven't used them since i started using seeds over a month ago then half a hour later took another one because the first did nothing, this one either took an hour to do something or finally it all ended on its own. Two and a half hours of pure hell. My poor two year old son had to see me pacing around the house trying to keep it together for him as I was looking after him, sometimes I really feel like my family deserves better and my work for that matter. After its all over i often take a deep breath and think will this hell ever stop. 

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11 hours ago, Siegfried said:

And as things usually get worse after 21 March, I fear a bit for the reminder of the year but no matter, things are what they are and we need to try to make the best of it every day again, no matter how bad it gets :)

Very well-said! I'm "counting down" to the same time period and it's good to read reminders like this. Thank you!

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7 hours ago, Dandownunder said:

My poor two year old son had to see me pacing around the house trying to keep it together for him as I was looking after him, sometimes I really feel like my family deserves better and my work for that matter. After its all over i often take a deep breath and think will this hell ever stop. 

I can empathize. My kids were 3 & 4 when I came into my first cycle (last year). I quickly learned that sound was one of my triggers and with kids just being kids, they can be, well, loud.

Tore me up inside to realize the sound of my kiddos playing brought me pain. In certain situations, I would have to quickly cover my ears with my hands to dampen the "sonic invasion." Evidently, I had done this behavior enough times that my 3 year old son picked up on it and would start to cover his ears with his hands, simply wanting to be like his Daddy.

Since they're a little older now, my wife and I are going to gradually begin educating them about my clustered situation.

Hang in there man!

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