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Cluster Headache Help and Support >> Getting to Know Ya >> struggling

Message started by zoford on Sep 30th, 2018 at 11:33pm

Title: struggling
Post by zoford on Sep 30th, 2018 at 11:33pm
Hello to CH

I want to write something witty or charming but the truth is I am struggling. I was recently diagnosed with episodic CH, which came on very suddenly last September.

This is how the neuro-opthamologist presented the information two weeks ago (I like this doctor a lot, btw): "Oh! You have cluster headaches!" When I started confessing embarrassing facts about the year, my writhing in pain, weeping, my eye going weird and small, my vision going out, hot face, hot body, congestion, weird agitation and restlessness that seemed partly because of the pain and partly its own thing, and on and on, he said, "Your autonomic nervous system goes haywire. Nothing that happens during a CH counts as a symptom that you need to worry about. We just need to get you set up with some oxygen."

I left feeling very triumphant. After a year, I was finally diagnosed. I returned to school. And after a long confusing battle with student health, I got some oxygen. Which turned out to be more confusing than what I'd imagined. But I'm getting better at it.

I have one year of funding left in my program because I lost last year, and my profs are waiting for me to be cured and finish my dissertation. But just like last September, the attacks came on back full swing (almost the very same day) after almost no attacks this summer.

Back at student health, the doctor said, "We've never had anyone with this problem." When I said, "I'm also new to this," he looked suspicious.
Anyway, I've been reading this board and the clusterbusters board and a billion peer-reviewed articles stolen through my library. My problem is, I can barely leave the house. All I do is try to stop the attacks. And when I can't, I lose all hope. And I'm afraid by the time I get it sorted out, I'll have missed my whole grad program or my whole life. And maybe this is as sorted out as it gets. I met with my advisor on Friday and I had nothing to report; all I have done is try to figure out how this oxygen thing works and go to doctors. And this is like the 5th time we've had that meeting.

I am also far beyond the reach of my friends; they feel helpless; at this point they don't even know what's going on. I don't know how to reassure them and also explain what's happening, because I do not feel reassured and I feel terrified myself. I'm hiding in my apartment sucking on oxygen.

I'm not really sure what the point of all this was. I'm scared. I'm afraid this is taking my life from me. I'm someone who fought pretty hard for the privilege of reaching adulthood, so this feels like an odd joke to be arriving now.

I have read lots and lots on here. I'm hoping for something to get a little easier. Or if I'm never going to finish my dissertation and I'll just spent my life feeling hazy and dumb and exhausted and then freaking out from pain, etc, I guess I have to make that okay. What do people do? I mean, for the hope part? I'm afraid of the way I feel for 60 % of each day. Then in between, I feel like, what just happened to me? And then it's happening again. I hope some of this sounds familiar.

History part: I lost my vision last September in my right eye and after 9 months was diagnosed with orbital inflammatory syndrome. Which is now under control(ish). But the pain changed dramatically after the first week or so -- instead of hurting to move my eyes, it hurt to have an eye on the right side. It never even occurred to me to think of it as a headache. Student health sent me for gazillion diagnostic tests, so I do not have many scary diseases. And last time I went to the neuro-opthamologist (he's three hours away) he added the diagnosis of episodic cluster headache.

Since then, been on O2, hard to get it though. After two weeks of freaking out, I convinced my primary care to give me 2 6mg imitrex injectors (before he was giving me 5 mg nasal spray-- I don't even know what that's for. I used it because it calmed it down a bit and I could teach my class, but each time I did, I spent the rest of the day in circles and circles of agony, with the oxygen not helping. I'm sure the 5 mg spray was doing something to me, making it worse, but I've given up on convincing.

I used one inject and thought I was about to die. Very painful all over my head and neck, my chest, pain shooting down my right arm. I spent a while on my couch with my face against the pillow just hanging out, to kind of see if I was dying or not. It wasn't too bad because the cluster pain was gone. I've since heard that I did not adequately prepare for the side effects.

I hesitate to put my history because orbital inflammatory syndrome and cluster headaches in the same eye are a ridiculous combination. The neuro-ophthamologist wasn't phased by this, but I now have two conditions no one, including myself, has ever heard of. He said the clusters were likely triggered by the inflammation, but they must have been coming for me anyway. Compared to a cluster attack, inflamed extra-orbital muscles feel like, a sprained ankle. Compared to a shattered bone sticking through your leg.

I need help but don't even know what to ask. I just try to survive. I'm afraid of losing everything.

Title: Re: struggling
Post by Sean McE on Oct 1st, 2018 at 12:52am
   Hello E,   Every time I start feeling sorry for myself a new chíer comes along and puts it back in perspective. The early years of this affliction are tough and itís easy to forget just how tough it is but there is hope and you will find ways to manage the pain. It kinda sounds like you might need a different doc so Iíd start there. If you have been searching here then you probably know about a prednisone taper while starting verapamil. The vitamin D3 regimen is high on the list. Injectable Imitrex is favorite for many to stop a hit (doesnít sound like you responded well to that), 50mg Imitrex take orally at bedtime does work for me as a preventative to get a good nights sleep (very important) but it seems most people here donít follow that route. Thereís a ton of stuff on this site that works to varying degrees for different people but very little thatís a sure fire fix.  Oxygen needs to be done correctly at 15 to 25lpm to work well. This whole affair is a steep learning curve and one needs to be their own advocate to get anywhere.
   Everyone here has been through their own personal hell but somehow we get through it and you will too. I know itís a bitch dealing with these monsters but hang in there... Sept is almost over and your episode may end soon (September is often my worst month).
  A little more info on your hits might be helpful.... when, how often, how long,etc. These monsters wonít kill you, in fact there has been no proof they even harm you but sure feels like it does.
   Welcome to the club and ask away, thereís a lot of folks here that love to help and understand what youíre going through.

Title: Re: struggling
Post by AussieBrian on Oct 1st, 2018 at 1:17am
G'day Zoford,† welcome,† and you're among friends now.† No need to explain because we truly understand.

Glad you have access to Oxygen so early because it's without doubt the most effective thing we have when dealing with a visit from that monster.† Even better news is that there is a list of buttons on the left side of your screen and one of them says Oxygen Info.

The bottom line is that you need to be using at least 15 litres per minute through a non-re-breather mask and with the help of a few breathing techniques developed right here you can reasonably expect some great relief.

We can help you every inch of the way in setting your gear up for best effect.

On top of that you may have noticed references to Red Bull and similar type energy drinks.† One of these guzzled straight down at the first hint of a hit is known by many to be a big help.† Tastes bloody awful,† I know,† but so long as it works.

There's also heaps we can tell you about different medicinal and dietary regimens that† can work as preventatives and have been known to give quite remarkable results in the longer term.

Cluster Headaches is no walk in the park,† we're the first to admit it,† but it's not a life sentence either.†

Ask all the questions you wish,† we are ever here to help you.

We care.

Title: Re: struggling
Post by Mike NZ on Oct 1st, 2018 at 4:05am
Hi E and welcome to the place where you don't have to explain what CH is like as we know what you're going through.

With CH being pretty rare, you're unlikely to get too much from student health as they, plus most doctors including many neurologists just don't have the skills or experience to work effectively with CH. This is why we always recommend that people work with a headache specialist.

The O2 link is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.

Read up and ensure you've 15lpm or more (25lpm is faster) and you're using a non-rebreather mask. Do practice when you've not got a CH as that makes it a lot easier to get the technique right.

I'd strongly recommend you give the vitamin D3 a go as a preventive. It helps over 80% of people who use it, including myself having gone multiple years CH pain free.

Read up about it at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE.

Once you've got the combination of an effective preventative plus abortives it can make a massive difference to the impact CH has on your studies (or work). Just getting a bit of control is a massive step forward.

Keep reading and ask away with any questions you have. We'll try our best to answer them and provide suggestions.

Title: Re: struggling
Post by maz on Oct 3rd, 2018 at 11:44am
Hi E, and welcome.† We've all been where you are.

Personally, I recommend imitrex injectors 100% for CH, but I do understand that some people have nasty side effects.† You have to decide which is the lesser of the two evils.

Are you using 02 correctly.† It must be a flow rate of 15 lts minimum with a non rebreather mask.† If you get either of those wrong, it won't be effective.

Something to try:† At the very first sign of pain ( don't wait to see if it's going to develop) gulp down a redbull - really fast.† It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do.† It doesn't work for every one but it does help many of us, so worth a try.

No one has ever heard of CH, so you are not alone there.† My doctor† is now well trained - by me, and admitted that his "headache" knowledge amounts to approx 15 minutes on migraine in 7 years of medical training.† I was over 5 years before I had a diagnosis.

This is easy to say I know, but you have to learn to live with this thing.† But the good news is you CAN learn to live with it.† Once you get your meds sorted out you will find everything comes easier.† It still hurts like hell, and is as inconvenient as hell, but you do learn to live with it, and you cope. What don't kill ya makes ya stronger.

Follow the other advice you have been given here about the D3 regimen, and let us know how you get along. We are all in it together.

Title: Re: struggling
Post by AubanBird on Oct 29th, 2018 at 12:05pm
I remember squirting a 2 million scoville pepper extract into my eye out of frustration because nothing seemed to work consostently at the time...  it didn't hurt as bad as the "headache". 

Something else you might try, along with all the advice above, is going on a ketogenic diet.  I believe it works for similar reasons as the vitamin D3 regimen.  I think it is one of the reasons my cluster headaches have been mild for the last several years.

Title: Re: struggling
Post by earthbee on Jan 12th, 2020 at 6:49pm
I suggest looking into Psychedelic medicine.

Off the baseball bat, I can only think of Melatonin which would be basics, other than that I saw in a documentary the guy with CH said it was a bullet or mushrooms even risk it all with a bad trip.

Search on google maps new-york-magazine-psychedelic-mushrooms-cured-my-cluster-headaches

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