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Sorry for making yet another topic.. I'm sure to chronic CHers I must seem like a drama queen. I had almost 6 days free of attacks (scary shadows on days 4 and 5 though) after eating MM for the 4th time.. Then had an attack this morning. I'm out of MM and am just feeling so disappointed and uncertain now. My last episode only lasted less than 20 days thanks to info I learned here.. Its now been at least about 25 days for this cycle.. Previous cycles when it was left unchecked seemed to last about 30 days maybe. Trying to tell myself that this has to be over soon based on my previous patterns. Just wondering if anyone has any advice on what they tell themselves during uncertain or difficult times..

 

Thank you

Edited by maskedmarvel
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I wouldn’t be discouraged just yet! If the Mm don’t stop the headaches completely they might make them at least be tolerable. Try and see if you can find some more. We have all been here, that feeling of discouragement. I am chronic and I have had many depressing days just accepting this into my life. Just try to do what makes you happy any time you are pain free. This is a life long condition. There is no cure. Accept it and enjoy ANY pain free time you get. 

Kat

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Get plugged into healthcare for oxygen and start the vitamin D protocol ASAP.   Give more information on dosing past and present.

 

hope to help

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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.

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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 

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2 hours ago, Siegfried said:

Hi maskedmarvel,

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

 

 

Yeah sometimes.. That and I also keep hoping that based on my past patterns I can reasonably expect this to be over soon since we are coming up on 30 days.. I had one that wasn't too bad on Friday but it lingered around for about 4 hours which is not usual for me.. Find myself wondering what that might mean and I am also unsure about how taking MM again now might affect the rest of this cycle.. I spoke to Dr Gawel today and he recommended I not take them again and let it run its course unless it gets really bad again

 

Kat, I am in total awe of the strength that chronic CHers must have.. For what its worth there are no more courageous people anywhere on earth. Also wondering if there is a CH charity or some way I can give back to this community.

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....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

 

 

Edited by jon019
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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.

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25 minutes ago, devonrex said:

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.

Wow...yes! 

...for many years now... from many sources I've seen that meditation (and other "mind tools") is useless for ch. sometimes the dismissal is aggressive. I find this to be short of sight and narrow of mind. meditated every day for every year I've had ch... didn't reduce or alleviate one single hit... but instrumental in maintaining my sanity and will to carry on between the hits...

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10 hours ago, maskedmarvel said:

Also wondering if there is a CH charity or some way I can give back to this community.

ClusterBusters is a tax-deductible nonprofit organization.  You can donate here: https://clusterbusters.org/donate/  (For future reference, there's a "Donate" button on the homepage, which you can get to by clicking on the word ClusterBusters at the top left of any page.)

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So based on what I am reading on pubmed etc, going from episodic to chronic is pretty rare. Idk, it also kind of seems like anyone who is prone to headaches around this time (including a friend of mine who gets migraines) is having a particularly difficult month.

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I got my first migraine attack when I was around 10 years old. That is now 42 years ago. Being one day (always in the weekend) per two weeks in my bed with serious headache, and strong nausea had been a part of my life as far as I can remember. I never made a problem of it. That was just how it was and I did not know anything else.

8 years ago, when I started to experience TAC symptoms, that was much more difficult to deal with. I was not used to that kind of extreme pain. First they diagnosed it as CH which I believed for a long time it was. But it did not fit the CH pattern so that was very difficult to deal with not knowing exactly what I had. Indomethacin confirmed what I suspected already for a long time and now it is diagnosed as chronic paroxysmal hemicrania. My migraine became chronic as well, completely against the expectation it should disappear at later age. My wife is very afraid the indomethacin will destroy me... so I try to stay away from it as much as possible. At least, when I take indomethacin, the PH disappears as snow in the sunshine but unfortunately very often it is getting substituted by nasty migraine attacks. So I can choose between the pest and the cholera :D

I still can work 4 days a week but I have my limitations. These CH/migraine or PH/migraine combos are very difficult to manage and every morning when I wake up and feel the pain, my first thought is..."how will my day be ? Will I be able to suppress it ? ... hope I do not have to take sickleave again." 

But when I have a good day, I enjoy more of it because I know it is short lived.

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4 minutes ago, maskedmarvel said:

So based on what I am reading on pubmed etc, going from episodic to chronic is pretty rare.

Yes that is correct and chronic does not always mean you have constant attacks 24/7. Many CH'ers are labeled chronic with 1-2 attacks per month. Chronic just means there is no remission.

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On 10/22/2020 at 8:35 AM, maskedmarvel said:

Just wondering if anyone has any advice on what they tell themselves during uncertain or difficult times..

I just posted myself that I'm so done. I'm 6 plus years and chronic only max 2 week break... ever.  I come here...I realize I'm not alone!!! Although most people with us don't know just how bad it is....I remember what I am and how strong I am and hang on to that. I hope you feel better soon!!!

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On 10/27/2020 at 11:35 AM, Siegfried said:

Yes that is correct and chronic does not always mean you have constant attacks 24/7. Many CH'ers are labeled chronic with 1-2 attacks per month. Chronic just means there is no remission.

Hi Siegfried, is the remission period with or without medication, i mean can we be chronic in remission with medication that holds the beast at bay, or does it mean that remission is also without any medication?

Alex

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