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Recently Diagnosed and very lost


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I've been recently diagnosed with CH...I've been having these episodes for the past 5 years lasting 4-8 weeks then it just disappears and starts again around the same time, pain is excruciating! This episode the pain is originating from my left eye, radiating throughout my temple and general left side of head.

Normal pain medication doesn't work so the doctor put me on 2 25mg of prednisone daily which has helped...

My headaches don't wake me up, they come each morning after I wake up, within 30-60mins of waking up

Before, my only relief was to try to fall asleep with the pain, after which the headache would be gone... Till it cones again...its never really sudden...I can feel it coming on

Are these symptoms of CH? I'm confused.

After I'm off the prednisone, will the headaches cone back?

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Sounds like CH.  Could be something else, but you should treat it as CH.

I take it you mean 25mg of prednisone twice a day. Typically 60mg/day is the max (or less, if you don't weigh much), and that's just for a few days before tapering off of it.  Try to get an appointment at a headache center!  And yes, they might come back as you get off the pred.  Pred can be really bad for you if you take too much for too long; usually it's used as a "bridge" to help with the pain while you start other treatments.

 

Okay, there are tons of things you can do.  The most common pharmaceutical treatments are verapamil as a preventive and OXYGEN as an abortive.  Oxygen is the #1 thing you want.  Read this: https://clusterbusters.org/oxygen-information/  Sometimes sumatriptan injections or nasal spray are recommended as abortives (called Imitrex in the US).  But GET OXYGEN (a competent physician can prescribe it).

Start the vitamin D3 regimen right away: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Try an energy shot (such as 5-Hour Energy) at the first sign of an attack.  Many people prefer it very cold.  Drink it down.

Melatonin at night helps some people.  Start at 9 mg.

Once you have tapered off the pred, you could be in a very good position to "bust" -- to take psychedelic substances to end your cycle and possibly prevent future ones.  Some of these substances are illegal to buy or possess and might cause you a significant "trip"; others are legal to buy and possess (but not to consume) and will cause practically no trip.  Read the numbered files in the ClusterBuster Files section of this board, and get back to us if you are interested in knowing more.

Others might chime in with their own advice for you.  CH is a crappy thing to have, but you can learn to manage it and maybe even do better than that.

Here's a lengthy discussion of options and new developments from the founder of ClusterBusters: https://clusterbusters.org/forums/topic/4567-bobs-big-pocket-guide-to-cluster-headaches/

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@CHFather, Thanks!

I will have to look into oxygen, my doctor recommended it but he said that most people COME in to get it..I'll look into getting it at my home.

Also, I'm intrigued by the D-3 Regimen, however, in the absence of all the other vitamins and nutrients at the moment, can I just purely take the D-3 for now till I can get the other vitamins?

I'll also be looking into the 5 hour energy and keep some around the house...

My worry is though, I hope that these things don't prolong or change my cycle, making it worst or lasting longer than they usually do etc :( since its episodic

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Okay, I researched/searched the forums and got some clarification on the D-3 regimen.

Taking ≥10,000 IU/day vitamin D3 without taking magnesium supplements will lead to a magnesium deficiency... When that happens, the magnesium-calcium ratio tanks and this will result in cramps, usually feet, legs and hands at first... While that may seem annoying and easily dismissed, when it happens to your heart and you feel a galloping sensation in your chest... It gets your attention big time.

"All the supplements in the anti-inflammatory regimen play an important role in preventing your CH and staying healthy. It's not a pick list. While you may be able to skip one or two of these supplements for a few weeks without any problems, unless you're obtaining them from dietary sources, you'll face trouble down the road." - BATCH

But to the last question in my previous post, is it a case where your body HAS to go through this cycle?? And if you interrupt it, its gonna come back even worst? :(

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>>>But to the last question in my previous post, is it a case where your body HAS to go through this cycle?? And if you interrupt it, its gonna come back even worst? :(<<<

 

The short answer to your question is no.  Many people, even people with chronic CH, become pain-free for long periods of time.  Often that's a result of busting, but many say that the D3 regimen has had similar good effects for them, and some find that verapamil is an effective preventive.  At some point, however, until there's a cure, it is in fact likely that it will come back and be worse, because that's the way CH is.  I don't know if it's officially a "progressive" condition that becomes worse over time, but that is many people's experience -- longer cycles, more painful attacks.  Which is why you need to learn what works best for you -- so you're ready for that and you can manage it better, with the result that even if your cycles are potentially longer and stronger, you can treat them faster and better.

 

I have to say that your doctor sounds very uninformed. Who the heck, as an attack begins, is going to drive or even walk to the doctor's office for oxygen?  What about attacks at night?  Of course you need to have it in your home!!!!!

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  • 2 weeks later...

"I will have to look into oxygen, my doctor recommended it but he said that most people COME in to get it..I'll look into getting it at my home."

 

 

So , I'm sitting at home, I feel CH coming on ,,,,,I'd be like,,,,well I have to drive to the doctors office(hospital) to get a hit of O2.

I wouldn't even make it out of my driver,,,,,and what if it happens at 2am???? 

I can't image a doctor who treats you for CH even suggested such a thing.

Doctor said ,Most people came in to get it?   Most CH sufferers are sitting at home with their O2. Those can't be CH sufferers who come in for O2.

 

 

If he ever saw a full blown CH he would have never said it.

I 've got it on a job just one time  and I scared the hell out of a whole neighborhood. That was years ago  , when  I had no  O2 or meds.

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Hey John,

Yea its crazy what he suggested! However, I've found some relief re: Batch's D3 Regimen!

I've been on it now for 5 days, 50,000IU per day and my headaches have decreased to the point where yesterday I didn't have a headache at all :)

I did have a headache this morning when I woke up, but that could have been triggered by what I ate which was Maple Almond and Pecan Ice Cream....right before bed or just because I went to bed late (I went to bed after 4-5am doing school work and woke up around 7am) but the pain was nothing compared to what I've experienced before taking the D3, it was almost manageable.

As for your question, they usually come on after I wake up...I would get up very normal, and within 10-15 mins I can feel the very dull feeling of the heasaching coming on, then it takes maybe another 10-15 mins to come on strong, and lasts ....I'm not sure, I usually bear the pain till I pass out...it maybe lasts like 1-3 hrs

Regards,

Seff

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1.How long are have you been seeing this doctor?

-I'm puzzled little bit, because you said you have had it for 5 years, but it looks like you just started to see a doctor just now?

 

a)Is it a neurologist?

b)I'm just curious why are you asking if it looks like CH if you already saw a doctor. I 'm not trying to be rude, I question everything too. How much do you trust your doctor then?

 

 

2.How long have you been on prednisone ?

-some people(maybe) more then some, report fast weight gain and other problems with long term use.

 

3.My experience only and from what I have read.

-my CH pain comes on fast. From first hit(pulsating vein) or first cracking noise in the skull  to about level 5 that is 3min . From 5 to 8 another 3 to 5 max.

- most people report very rapid onset .Basically from : I'm feeling great to level 8 let say 3-10min.

-Yours look like they have more gradual onset.

-Maybe you are lucky and you might not have CH but something else.

 

(others could join in in regards to speed of onset of CH maybe I'm wrong)

 

4.) The author of VITd reg. is saying that you really must take all the suplements for it to be effective.

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This is the first time I saw this doctor. I've been experiencing these headaches for 5-8 years actually, they got progressively worse.

As a teenager I've gotten prescription glasses in hopes that it would stop, I've gotten UV shades because at one point my PCP told me it could be sun exposure (I worked in the sun a lot), but mostly its been treated as sinusitis because of the seasonality. I would go to my PCP, tell her about the headaches and she would say migraine or sinusitis and prescribe sinus medication or stronger pain medication like panadeine...which did absolutely nothing for me. Headaches still came and left when they felt like, regardless of what i took.

But after years of suffering I decided to visit another doctor to get a diff opinion, I explained my symptoms to him...I specifically let him know that they come and go with a seasonal pattern and that it feels like someone is squeezing my eye from the back! with pain radiating all the way to my temples, my jaw, the top of my head, all on the same side and at the back of my head, rendering me useless. Closing my eyes dont help, staying still doesn't help, i get nauseous, i get weak, i get clammy with sweat, grunting and making noises help somewhat and rolling around....but there is legit nothing at all that i was prescribed before that helped...they just go away on their own after I lay in suffering and from that description he knew exactly what it was. The preventative medication that you have access to in the US is not avl here in Barbados.

I asked because it wasn't textbook in the sense that I didn't have a droopy or teary eye, or stuffed up nose etc, or it never woke me up from sleep. Just always after I wake up on mornings...like it knew what time to come, I guess at that time I was looking for anything to blame it on other than CH..you know something treatable, sigh

Doc isn't a neurologist

I was put on 50mg of pred daily for 7 days.

Yea, I've been communicating with Batch via email ref the regimen

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It sounds like CH ,regardless , but I still wound't be 100% sure.

If you get it always in the morning maybe it has to do with something else that is happening in your sleep right after you wake up.

 

 

You should get O2 as soon as you can , even welding O2 will do.

For me it works really quick,

be sure to read a guide of proper use otherwise it will not work at all. I learnt this the hard way. 

 

What is your normal  blood pressure and when you get CH?

 

E-drinks-----For me anything really helps,,,but always cold,,,sugar,no sugar, red bull,monster ,cheap walmart brand,  it'll all the same. And always at the very first sign ,I drink it really quick , then O2

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