Leaderboard

Always been chronic, the frequency has simply changed for me, the fear seems part and parcel with ch, fear of the pain, fear of the next, fear it will be worse, fear when you get a longer break than normal because you think it will come back worse, fear a treatment will not work, fear it will then stop working. On and on they go, many of these are the same mind treadmills that you get with ptsd, I mean subjected to unimaginable pain for upwards of hours, to get a respite, knowing it is coming agai, sometimes with no rhyme or reason, sometimes fearing the simplest things could trigger. For me, trying to focus on the now, helps in between attacks, guided meditation helps calm me, even the mindset that this could be as good as it gets helps in some ways then you turn to coping with what it is right now and not what it might be later.

....been both episodic and chronic.....the fear of changing from one to the other was constant and oppressive...then it happened and i learned it's really the same beast in different form... and strategies must and can be adjusted. there is ongoing discussion on which is "better"...i could make arguments on either side...but it really doesn't matter cuz ya don't get to choose. personally, upon reflection, i think the basis of the fear was "change". had a similar gut wrenching fear of hits changing side...why would that be "worse"?..dunno and never found out. ...the beast is hard enough to deal with...making yourself nuts with worry about how he changes the "rules' is kinda pointless....attitude, a plan, and the right tools are the key.. best jonathan

Not to take over the thread but I think everyone has their own fears regarding CH. mine is that it will get so bad I’ll be out of work and have to go on disability, or having children and being pregnant having to stop MM. anyone else have similar fears? Kat

Hi maskedmarvel, What is exactly your fear ? Do you think it will get gradually worse and you will turn chronic ?

Thanks Kat I did in my other post... My cycles seem to come just short of every 2 years.. Times when I didn't know what it was and it was left unchecked IIRC lasted about a month. Last time, when I found this site, it lasted less than 20 days and I used MM 3x.. I have been on the vitamin D protocol for about 2 weeks now (was helpful last time too). This cycle started some time near the end of September. I have taken MM 4x about 5 days apart. Last time I ate MM I had almost 6 days of no attacks but got some border line shadows.. Since then I have gone about 24hrs between attacks and had a pretty mild one early this morning after almost 36hrs.. I am hopeful that it will be over soon since they seem to be getting weaker and further apart. The nature of the cycle, how to know if its almost over is hard to understand. I spoke with a doctor on the list here, Marek Gawel last week and it wasn't super helpful. The conversation was about 10min long, I forgot to ask about oxygen and he didn't even mention it... Just what pharmaceuticals there are which I probably can't afford anyways. I am trying a different neurologist as soon as I can next week. Based on my previous pattern I am hopeful that this cycle is over soon. When i asked dr Gawel he just said its over when I don't get shadows anymore which is like saying its over when its over.