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Hey all. I have been an episodic CH for 15 years. I am 34 years old

As an integrative/alternative doctor, I have tried almost everything to treat this. Yes including all the psychedelics

The past year I have found an amazing combo that hasn't cured me but certainly made it possible to have a wonderful normal life between attacks.

I have learned what foods my gut is intolerant to and stay away 90% of the time (gluten, diary, almonds, bananas, caffeine etc), I have acupuncture from an excellent acupuncturist at least once a week, I live a clean life with as few toxins as possible (free range foods, no smoking drinking etc) and most notedly have intravenous magnesium every second day or so during a cycle. I do still use a third imitrex/imigran to treat a headache

What's different on this is that between attacks I feel completely normal. I can work, sit in the sun, run around with my kids, not feel low etc and the attacks are much milder, never more than 1 a day, never after the first hour of waking and no longer everyday for a month. Have about 2 a week or less. Thought I had beat it

My problem ... And question is thus:

I started with first headache of cycle in June. Then nothing for a month. Another 2 in July, then about 5 in August and now 8 or so in September. Still following the changes I noted above.

I know I'm a special case but has anyone experienced anything like this?!

I have never lasted more than 2 months but then everyday for 2 or more attacks a day.

I'm terrified I've gone chronic but trying to hope for the best.

Has anyone gone from episodic to chronic .... What was it like?

Searching for light in this madness

Xx

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G'evenin Doc Leila!

Welcome to the community but sorry you're here!

To be very honest, your case is very much different than most folks I've encountered over the years! I've been ECH for 31 years. ...typical cycles are 16 to 20 weeks with as few as 2 and up to 8 hits daily followed by an 18 mo remission.

If I remember correctly, you're said to be CCH if you have 30 or less painfree days in a year so I think you're a bit early in worrying about becoming chronic....but I DO understand your fear!

Sorry to see that the alternatives haven't been effective for you! Have you looked into the vitamin D regimen?

Dallas Denny

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Hi DocLeila,

 

What DD said. Plus the phenomenon of cycles suddenly and unexpectedly morphing and/or extending in length after many years/decades of a consistent pattern has been reported time and time again here. Fortunately for some of us, the remissions can extend in length too.

 

It sure sounds like you've been largely successful lately with minimizing the attacks, and I would hope adding one or more additional angles of counter-attack could enable you to land a knockout punch. Something like the D3 regimen DD mentioned, or a new busting substance. Licorice root has been favored pretty heavily by some herbal enthusiasts BTW.

 

I think every Episodic fears going chronic whenever their cycle becomes longer than previously experienced, but I think it's too early for you to be too concerned about it right now.

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Thank u for the warm welcome. Feel a lot more hopeful now ðŸ™ðŸ½

Didn't mention but Vit D has been corrected and take licorice extract daily. Think the entire regimine has been what's worked so far... Sum bigger than its parts and all that! Hmm maybe now is a good time to do some psilocybin busting

Incidentally what's longest anyone has been in an episodic cycle?

Xx

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A little over 3 years ago I found this site, I had been dealing with clusters for around 30 years and the cycles were getting progressively worse and longer, I was at a point that I would max out almost daily on the amount of imitrex I could take, I had been in cycle for around 7 months, (I was terrified I had gone chronic) the steps I took once I got here was, getting set up with the "high volume oxygen" next was to get completely weaned from the Imitrex, (which would have been impossible for me without the oxygen) and then to try to bust with what was suggested here, I was fortunate to be able to get the mushrooms and fortunate that they worked for me the way they did, I was pain free for 39 months, (up to that point 14 months was my longest pain free time) I have been back in cycle now for the last six weeks, other than a few times I have stayed off the Imitrex (which I feel was the main factor in my cycles lasting longer and harder) and depend on oxygen to abort the attacks, which works almost always, I also give credit to the D3 regimen for helping to keep the pain level of attacks down and the frequency of attacks further appart.

"Hope is found here" I urge you to read all you can on this site with an open mind and ask any questions you may have.

Tucker...

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Hi doc,

 

My two rules of clusters: no two cluster sufferers are the same, and just as soon as you figure yours out, it changes. 

 

The beast has a way of morphing when we find a way to make things better. It's very resilient that way. 

 

What DD said about being diagnosed as chronic is true, regular attacks with no remission, about 2 weeks apart for a year. I've been chronic for 8 years, no fun.

 

I believe in trying just about anything and everything, and documenting your attacks and what you try. This is the only way to find out what works and what doesn't. I'm glad to hear you've tried a lot of things and are finding something that works for you. It's not a solution I've come across before, but if it works, awesome.

 

I do know eating healthy and keeping in shape helps. A number of people have tried acupuncture to no avail. Personally, I wouldn't waste my money on it. Not saying it is a bad thing, but just don't believe it helps with clusters. 

 

MG

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Welcome!

 

Sounds like you have already done a lot to help yourself!! Good for you.

 

Please go to the D3 regimen given above. It includes more than d3 and is an anti-inflammatory regimen. It has helped many to at the least lower the intensity of their hits. I stay on it year round. Good stuff.

 

My cycles used to be shorter in the way back, but I have had an 8 month cycle year before last I think it was. Yes, that will get you worried!! All night, every night. Sucked. In the way way back machine I was chronic but the hits were shorter and milder. It does not help to worry about being chronic. Mine vanished for about ten years and returned as ECH but at a much higher cost. Sooo, for me CCH was actually easier. Then they only came during the day, as an ECH, they come for the entire night , every night.

 

I would try ditching the trex for a few days and try busting. Lovely light down that tunnel from my info!!!!!

 

ATB

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I know this is cliched but this really is an amazing group of empathetic people! At least so far lol. At least our pain has made us that right?

I will track down original d3 regime and see what I can add. Been in and out of this site for years, it just gets better and better every time! Forgot what imitrex does to be honest, think it started with thinking that 3rds would not have that effect but I'm suspecting it does! Will get some O2 stat

Off to Bali alone in a week though and terrified of attacks on the 14hr flight so going to have to shoot up there :(

So much love all

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You know about energy shots/energy drinks for aborting or reducing the severity of attacks?  Works very well for lots of people.  Bring a couple on the flight -- might provide an alternative to shooting up.  (Shots are generally better than full drinks -- more caffeine and easier to get down fast.  Some folks here say a strong cup of coffee can be quite helpful, too.)

 

When you say you are taking "licorice extract" every day, do you mean licorice root?  I ask because the person who developed that approach to treatment was very insistent that licorice root should not be taken for more than a few weeks at a time.  I guess given your profession you would know; I'm partly alerting you to that concern and partly asking whether it is actually licorice root that you are taking.

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Leila ,, you sound very much like my son which his HA doc said is "atypical" ,, they are never the same months .. or times between ,, they do seem to "cluster" around the fall and spring equinox, but then he can get say 5 in june/july ,, or some in feb or January that have no apparent reason.  I try to notice what he has eaten, if he has had a cold or sinus issue surrounding it, are there any odd smells in the air.  is anyone else in the family experiencing any sort of health issue. 

 

this is all I have been able to come up with

 

his attacks happen

 

1. around the fall/spring equinox

2. there seems to be sneezing/hay fever at other times

3. there seems to be an odd smell in the air (ie. something in bloom, or city gardners pesticides)

4. sometimes an upset stomach

5. benedryl helps at times

6. o's to abort 

 

don't know if that helps ,, but I to worry when I see them start to become more frequent, but then they once again hide their ugly head for a few months only to return.

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Dr Leila,

 

My experience is not too dissimilar.  I am 36 and had my first CH at 20.  I've been lucky in that I've been irregularly episodic the whole time.  I've had various cycle lengths lasting from 1 week to 2 months and then typically disappearing for 6 - 30 months.  No real correlation to food consumption or sleep patterns.  After more than 2 years pain free this most recent cycle started in August and has been totally random.  For the first time ever I've experienced the CH at the same time of night nearly to the minute for multiple nights in a row.  Some days have 1-3 CH and some have 0.  I even went 5 days in a row on a cruise that was completely PF...with the beast only to return upon my return home.  I'm just trying acupuncture for the first time and RC seeds....and Red Bull virtually every day (which i'm certain is terrible for me).  Thank heaven for this board and the knowledge here.  I'd feel even more isolated and depressed without it.

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