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Hart1985

Some advice please

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Hi all,

Am new here and just wanted to ask some advice. Am only on my 3rd ever bout of CH so am nowhere near as bad as many of you on here- I admire how you cope with this. There are generally 3ish years between my episodes and seems to be no real trigger to them other than they have been around stressful times in my life. Most recently my mum died at the end of Feb and obviously the current situation we are in is stressful for us all.

I should have noticed the warning signs coming but I didn’t and then bam! Been going for about 3 weeks now, on zomig spray when needed but am reluctant to take it too often as feel I should save it for the really bad ones! Don’t want to become immune to it!

my question is what do you do in between CHs. At the moment I have shadows most of the time which I can cope with but are limiting me to what I can do. I feel like I sit all day waiting for one then dread going to bed as I know they will come again. Any suggestions on what you do to help you cope would be greatly received!

 

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Others are likely to have suggestions specifically regarding the dread.  But you can reduce the dread by being sure that you are using all the best weapons, of which your spray is just one, and maybe not even the best in that category. You want oxygen; you want to start the D3 regimen; probably you want to be taking Benadryl right now; you want to consider busting; you might want an injectable sumatriptan . . . . This post addresses those things and some more, including (far down on the page) some advice about shadows (ginger, mostly): https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

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Hang in there Hart,  CHfather is right. Try the D3 Reg in between and in a cycle.  Verapamil works well for me along with the D3.  Just got done with a cycle,  and with these things in place it was much more easy to go thru.  Take care and keep us posted.  Good luck.

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Oxygen at home available at all times was huge for me, decreasing the fear I was living with. At this stage triptans were causing cardiac events (together with verapamil).

Before turning to regular preventative busting I too was shadowing between attacks. For years I treated them with Herbal Protocol (I will insert link on the next reply). I had been using Vitamin D but when I started doing it right - the whole Anti-inflammatory regimen - shadowing more or less disappeared, for good. 

Now I have been 5 years pain free with combination of Anti-inflammatory regimen and preventative busting. Good luck mate !

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On 4/25/2020 at 12:12 PM, Hart1985 said:

my question is what do you do in between CHs. At the moment I have shadows most of the time which I can cope with but are limiting me to what I can do. I feel like I sit all day waiting for one then dread going to bed as I know they will come again. Any suggestions on what you do to help you cope would be greatly received!

 

Hi :)

 

I'm new here myself, sorry to meet in these circumstances but I feel like I really understand you on this one. So far Verapamil has been really good for me at seriously reducing the pain level of the attacks but I'm still left with shadows/brain fog/pressure right on time too. One piece of advice here I've found really helpful is to figure out your triggers, often items that aren't a problem outside of a cycle. As I discover mine and eliminate them from my diet I'm finding that the none of the shadow pain ever goes over a 2 or 3 anymore. It's the trigger that spikes the pain level for me it seems. Sadly, caffeine in any form is a no-go for me. Also chocolate. And any food of any temperature, hot or cold. Because of course, lol.   

Nice to meet you

 

Julie

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@Hart1985 hey welcome

im glad you found the site. You’ll find excellent info on here. Although you are familiar with the headaches, I always suggest keeping a headache diary. Especially if you’re gonna be starting the d3 regimen and Benadryl, this can help track them and see what is working for you. Shadows stink. I drink a ton of water. This seems to help a bit. I also have ginger capsules that I take every day. Some find relief with energy drinks like Red Bull, 5 hour energy, etc. they make me sick so I stick to the v8 +energy. Busting is a good option for many. I spent hours reading through everyone’s busting stories. It was very encouraging. Take a look around on the site. Everyone is very helpful

kat 

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The others have good advice on meds and such, the dread I understand, for me meditation has helped with that or keeping myself occupied with anything that takes some concentration to keep my mind off of the inevitable next hit. There is a really good app called Headspace, has you put in your mood and other keywords and suggests one of the guided meditations, most of the free ones are quite good, have no info on the paid portions, have only used the free ones. I was a firm "All that meditation crap is hokum" until I tried it and it really does help with the dread and some other feelings that come with this beast. 

 

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