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jtmochel

Short window and mild symptoms

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Hey, in some ways I hesitate to post, only because I know what I deal with is candyland to most. Basically it's a 3 week window typically in fall and sometimes an additional 3 weeks I spring. I'll get one headache a day and maybe a couple days with two before going back down to one. These either occur around 7-9 AM or in the evenings. So I guess I'm curious if this is a typical story? The pain is bad and I've been nauseous but never screamed so I'm thinking a moderate severity.

For small windows and minimal headache frequencies I'm thinking I don't need the big guns. There are many recommendations out there. Right now I was going to start back on my multivitamin, vitamin d, fish oil and add 10 mg of melatonin. 

Any advice on prevention/reduction would be a huge help.

Jon

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jt,

How long do your attacks last?  How long have you had CH? 

Do you use nothing at all to stop them -- no energy shot/drink or caffeine, no oxygen, no triptans?  And aside from what you have listed, no other preventive(s)?

9 minutes ago, jtmochel said:

It seems like I would be a pretty good candidate for vitamin D?

Virtually everyone is a good candidate for the D3 regimen (the whole thing: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708).  It seems to be good for you no matter what (don't sue me if that somehow turns out not to be true). 

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They last 45 to an hour and I think I've been having them for the last 8 years. I thought they were normal headaches at first and for the next 5 years I've been trying to treat sinus stuff haha. I was misdiagnosed a few times. (To be fair I was in medical school and misdiagnosed myself). But the location of pain was right over my maxillary sinus so it was hard to think anything else.

So I've never tried anything because I didnt know what I was dealing with other than nasal steroids, netti pot, humidifier... allergy stuff ect. I had my first appt today just to get ECH on my problem list and I got oral sumatriptan but I'm doubting that will be most helpful to me.

Thanks for the reply.

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Yep. Oral triptan is almost certain not to help.  Some people with predictable attacks seem to find that if they take them a couple of hours before an attack they can help some.

At the least, try an energy shot, such as 5-Hour Energy, at the first sign of an attack.  For some, just a strong cup of coffee will do.  As a former med student, you will know how to look up the standard medical treatments. Oxygen is a no-side-effect godsend.  Your cycles are so short that a typical preventive probably won't help (I think).  Doing D3 year-round gives you good protection.  Maybe a course of steroids, which typically stops the pain while one is on it but doesn't end a cycle, could help to get you through most of your cycle. (I would personally be reluctant to mess with steroids or triptans any more than necessary, since anecdotally they seem to have bad long-term effects related to making cycles longer. Not to mention the just generally bad effects.) 

Some people's CH flares up during allergy seasons.  Benadryl is recommended and helps some people quite a bit -- you can go up to 25mg 3/day and 50mg/bedtime, or what you can tolerate.  But maybe you already did this as part of the "allergy stuff" you mention.

Misdiagnosis and mistreatment are common with CH, and sinus things are a common misdiagnosis.  I guess I would mention, however, that the primary CH pain is typically at the eye.

There are possible effective pharma preventives expected to come out soon.  Whether they will be superior to the D3 regimen, I can't say.  I bring that up as preface to the hard fact that for most people CH doesn't get less bad with time, it gets worse.  So action now might help you later on.  This site is based on the idea of "busting" -- taking psychedelics to prevent and/or stop cycles.  If you're interested in exploring that more, look at Dallas Denny's post in the ClusterBuster Files section for links to information.

 

 

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Yeah I understand the standard medical treatments. And I'd like to avoid steroids cause they also turn me into a rage monster. And yeah I even got allergy tested and it was all negative.

I agree my pain presentation is atypical. It's a combo facial/inferior orbital pain. But I'll get radiation to my eye and superior orbit area.  I also get pupillary constriction, lagging eyelid, tearing, and runny nose on that side. Also I feel like I want to die sometimes... So if it's not episodic cluster headaches I'm stumped haha. 

But yeah... I'm almost 26 and I'm expecting it to get worse so I'm trying to figure it out. Plus I obviously want to be there for my patients in the future.

 

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1 hour ago, jtmochel said:

Hey, in some ways I hesitate to post, only because I know what I deal with is candyland to most. Basically it's a 3 week window typically in fall and sometimes an additional 3 weeks I spring. I'll get one headache a day and maybe a couple days with two before going back down to one. These either occur around 7-9 AM or in the evenings. So I guess I'm curious if this is a typical story? The pain is bad and I've been nauseous but never screamed so I'm thinking a moderate severity.

For small windows and minimal headache frequencies I'm thinking I don't need the big guns. There are many recommendations out there. Right now I was going to start back on my multivitamin, vitamin d, fish oil and add 10 mg of melatonin. 

Any advice on prevention/reduction would be a huge help.

Jon

This may sound a little weird but I think I cured my ch's by listening to a specific type of music. I think it has to do with helping my brain sort out timing system flaws. I listen to this music 24/7. Its a 9 hour youtube video by relaxdaily. I was chronic' only getting two weeks without ch a year before trying this. Now I only get one ch per week. good luck Jon    

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11 minutes ago, doctorssuck said:

This may sound a little weird but I think I cured my ch's by listening to a specific type of music. I think it has to do with helping my brain sort out timing system flaws. I listen to this music 24/7. Its a 9 hour youtube video by relaxdaily. I was chronic' only getting two weeks without ch a year before trying this. Now I only get one ch per week. good luck Jon    

Appreciate the sentiment. And apologize that doctorssuck haha.

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On 4/5/2019 at 7:05 PM, jtmochel said:

Hey, in some ways I hesitate to post, only because I know what I deal with is candyland to most.

Don't hesitate to ask any questions, it is not a competition and having one a year or 500 they all suck and we would like to help you. Plus if you are or will become a doctor we would like to have you on ore side!

like CHfather said you should get on the full vitamin D3 it can make a big difference for you.

Oral triptans take at least 30 minutes to start helping so they can seem worthless at times but it is better then nothing. I would look into getting oxygen set up to abort your attacks and the energy drinks taken at the first feeling of the cluster coming on can get you a few more minutes to get to the o2 tank. 

If everything works as planned for me I can sometimes abort a attack in 5 minutes. That is with downing a 5hr drink and getting on the oxygen within the first minute of any cluster feeling coming on. In real world situations I abort my attacks in about 15 to 20 minutes with only o2 along with my other preventatives I do every day and 5 days. 

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