Jump to content
ClusterBusters
Sign in to follow this  
evolution

hi im new to this

Recommended Posts

Hiya peeps, my name is damian and I am welsh.

I had my first real headache in 1998, i was 18, on the kip scale that i have seen over the past few days, this was a level 10 and i will never forget it, it is burned into my memory. I saw a doctor within an hour and was told that it could be cluster headaches. Being 18 I didnt appreciate what this meant and thought it was just a case of normal headaches but lots of them in a short space of time. I found this strange, as to me it felt like one big headache with lots of very sharp peaks followed by periods of exhaustion before starting all over again but some form of headache was always present (minimum kip 2) I was prescribed imigran 500 tablets.

The headaches werent as severe after that and within a week they had gone completely. Shortly after that I moved address and the headaches didnt happen again for a while ( a couple of years maybe ) Then as suddenly as they dissapeared they were back again but nowhere near as severe (max kip 8) I made an appointment with the doctors who disagree'd with the previous doctor and told me that i had a sinus infection and prescribed 1 weeks worth of anti biotics. sure enough after the antibiotics had finished the headaches werent as severe and within a week they had gone. This has now been going on twice a year and been lasting for between 2 - 4 weeks. I kept going to the doctors about a week to 10 days after first noticing the pain (when i could get an appointment) and kept explaining the same symptoms and they kept telling me the same thing, sinus infection and get an eye test to rule out anything serious, every eye test ive ever had the optician has said perfect 20/20 vision. Every time i have been to the doctors there is only one thing that i have asked and that is why does this keep happening twice a year almost every year. And so it continued.

About 2 weeks ago i felt the symptoms again. stuffy right hand side nostril, pain behind and above my right eye, straight away I said to the other half ive got a sinus infection coming. About a week later I had a kip 8, i phoned the doctors pronto and refused an appointment for later that week and demanded I was seen now as this was an emergency. By the time I had my appointment the pain was back to a kip 3. I told the doctor I had a sinus infection and for the first time ever she disagreed. However she prescribed me anti biotics and sent me off to get an eye test. Had the eye test, surprise surprise. My eyes are fine. Because she had told me that she didnt think it was a sinus infection it sent my mind ticking back to what id been told 15 years ago, cluster headaches, so I decided to do a bit of reading on the subject.

Let me just say, I used to think I was unlucky and that what i had to go through was severe, I now realise that im one of the lucky ones and cannot possibly imagine life as a chronic.

I watched a video earlier on this website and i literally cried watching someone have an attack, I know this pain, this is what I have.

My pain is only ever over and behind my right eye, it doesnt change sides ever, I can only describe it as excrutiating when at its worst and I have banged my head against the wall and have held a spoon against my eye seriously considering scooping it out completely in an attempt to relieve the pressure. It feels like my brain is crushing and electrocuting my eye all at the same time. I would gladly let someone drill a hole in my head if they caught me at the right moment.

I never ever noticed that these headaches occur almost at the same time daily and at roughly the same time of the year. (I am self employed and have since checked when I have taken time off).

Anyway, armed with this new information I scheduled an appointment with the doctor for 11.40 the next day when I knew that by rights I should be in full swing by then. Sure enough when I was called by him it had just ramped up to a level 7. I had gone there with the mindset of insisting that he refer me and I was not going to take no for an answer it was either he refer me or I was going to wreck the place and go to the police station instead. What he said next staggered me, he agreed with me and said that my description was spot on. I have now been referred to a neurologist and been prescribed imigran 20ml nasal spray, Im not sure if it works yet as Ive only used it twice and both times it didnt seem to make it any better but I can say it didnt get any worse.

In a way im relieved at finding out that it may be this and that im not alone in this world after all but on the other hand im very nervous as when I thought it was a sinus infection, it could be prevented or at least controlled. Now I find myself in a world where it cant be prevented and only partially controlled. I am now in fear of a level 9/10.

Share this post


Link to post
Share on other sites

I was told they were sinuses for about 15 years, as well. I was given a gamete of unnecessary meds.

You have stumbled upon a great site with great people.

Welcome!

Share this post


Link to post
Share on other sites

Evo, thanks for writing so clearly and powerfully. Sadly, your experience is not as uncommon as it should be.

CH can be largely prevented and it can be effectively controlled.  The strategies used here, referred to as "busting," will help you do that.  You can start reading about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

There are many files in the "Clusterbuster Files" section here that will give you more information. 

Here's one report about the effectiveness of busting with LSA: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

(Most people here prefer a different kind of seed, rivea corymbosa (RC), than what's used in that report, but the active ingredient, LSA, is the same.)

First thing you need to do is get back to that doctor (or your new neurologist) and get a prescription for oxygen, right away.  It is the best abortive you can get: highly effective, and no side effects.  European medical standards name it as the first-line abortive for CH.  Read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

You sound like a determined and persistent person.  Be that way about oxygen!!!!!!!  Virtually everyone here would tell you the same thing.  For most people, oxygen will stop an attack within 10-15 minutes. (Must be a high-flow regulator (at least 15 liters [or "litres"] per minute) and a non-rebreather mask.)

Others can comment on the nasal spray.  It's not the best of the pharmaceutical solutions . . . but people here might advise you about why many/most/all of those solutions are against your best interests in the long run, when there are other "self-help" options: busting foremost, but also others that have worked very well.  (The spray will interfere with busting.  Hopefully, you'll find that the things I'm about to mention will enable you to do without it.)

At a very simple level, try drinking an "energy drink" quickly at the first sign of an attack.  Something high in caffeine and taurine. In the US. common brand names are RedBull and Monster.  It will probably cut back on the severity of your attacks.

Brad, who just welcomed you, is one of many people here who have very good success with the anti-inflammatory vitamin D3 regimen.  You should seriously consider starting that right away.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Others have had good success with licorice root.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

One long-time member has been happy with the effects of a combination of the D3 regimen and kudzu (and RC seeds).  See that thread here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1326294637

In the longer run, there are medications and strategies being developed out in the world that can help a lot with CH, potentially soon.  You will make your CH much more manageable with strategies I've listed here and that others will discuss with you here, guaranteed.  And eventually there will be other things.  It's not a lifetime curse.

Share this post


Link to post
Share on other sites

Hi Damien, and welcome!  So sorry you had the need to find us, but glad you did.

You have started to do the best thing you can do to control this disease -- advocating for yourself.  I can tell you from personal experience that it has saved my life!  Knowledge is power!

Damien, please go to the drop-down menu below (Forum Jump) and select "Clusterbuster Files."  Please read, read, read.  As questions arise, come back to this thread and ask away.  It may take a bit, but someone will always be here to answer.

(Edited to say, CHF beat me to it...again) ;)

Share this post


Link to post
Share on other sites

Thank you, CHFather and Alleyoop.  I knew you would deliver a more thorough and formal introduction.  I'm buried in a book today catching up on homework so I can only have brief visits.

You are in great company here, Evo (especially with these two gentlemen).  There are many ways to attack our collective pain and get your life back on track.

Good Luck! :)

Share this post


Link to post
Share on other sites

Hi Evo. Welcome. You made your first post less than 2 hours ago and have already prompted enough responses to keep you reading and learning for at least the rest of the day. We're glad you're here and are certain that you'll find relief using some of the methods you'll be reading about. Feel free to ask questions anytime as there is almost always someone here to help. Good luck!

Share this post


Link to post
Share on other sites

Many thanks peeps, read, read, read they say. Thats all I have done for the past 3 days. I have so many questions and so many things are seeming to fall into place with every page I look at.

At the moment I just feel frustrated that I have gone through this so many times taking the doctors word for it that its what he says and all the time he is talking through his backside.

I plan to arm myself with as much information as I can before I see the neurologist and started a diary 3 days ago. I have wondered how much my sub-concious has helped me without me realising it. I drink coffee like a fish during bouts, I very rarely drink alcohol and I dont eat chocolate. I know these things dont apply to everyone but it seems strange to me now without ever having noticed before. but then again maybe im looking for something in nothing.

Its funny (probably not the right word) that some people report bouts after a stress free period ive just got a new job after a stressful christmas worrying about bills etc, come to think about it christmas is always stressful working or not. I start tomorrow and am dreading it to be honest. I think im near the end of my cycle so I just hope all goes well.

Share this post


Link to post
Share on other sites

Hi again peeps, question.

I keep seeing people refer to shadows, can someone explain to me what is actually meant by this term ? I mean if this is a smaller headache that comes before a major one then I know exactly what is meant. But as I said in my original post i seem to be at level 2/3 all the time with peaks coming on extremely quickly. Whereas most of what i have been reading suggests that people go from 0 without any prior warning. Are these their own little individual headaches or are they what you would call shadows ?

Share this post


Link to post
Share on other sites

Hey Evo!

It is so good to see you getting all this advice and encouragement that will put you on the fast track to relief!  8-)

i seem to be at level 2/3 all the time with peaks coming on extremely quickly

That's what I'd call a shadow, but as long as I've had CH (30+ years), and have been hanging around CH message boards (15 years, on and off), I hate to admit I'm forgetting exactly what the official definition of a shadow is!  :-[

...been prescribed imigran 20ml nasal spray

In a pinch I've actually been able to abort an attack with one of these, although the injectible form is known to be the very most effective, and it would have a higher likelihood of completely aborting an attack for you.

You'll read that imigran shouldn't be used within 5 days of busting, which is one of the reasons we're so rabidly enthusiastic here about using high flow 100% O2 instead.  8-)

Share this post


Link to post
Share on other sites

Many thanks for the information on shadows, that explains a few things and has generally put my mind at ease. But the biggest thank you of the day goes to the tip about red bull, I dont normally drink red bull and dont particularly like it but I thought I would give it a go based on the advice given on here.       

When I left this morning I stopped in the shop and bought myself one. I would have had a min. level 6 whilst in work on my new job, drank the red bull at the first sign of it getting worse and it stopped, if anything the shadows got lighter. So many many thanks, you may have stopped me losing my job without having properly started it.

Share this post


Link to post
Share on other sites
try drinking an "energy drink" quickly at the first sign of an attack

drank the red bull at the first sign of it getting worse and it stopped, if anything the shadows got lighter. So many many thanks, you may have stopped me losing my job without having properly started it.

CHf strikes again!! [smiley=2vrolijk_08.gif] [smiley=thumbup.gif] [smiley=thumbup.gif]

Share this post


Link to post
Share on other sites

Hi peeps, I had to break the news to my employer today, I had a weird experience yesterday after encountering line marking spray (solvent). Its effects were immediate, I knew I had to leave and leave quickly. Within 15 minutes I was home drinking red bull and it took around 10 minutes to ease but something was different, I dont know what or how to explain it but it was definately different. The "physical" symptoms were much worse, not so much the pain in the head (kip 6) but afterwards I was shaking almost uncontrollably, if I consciously tried to make it stop then it would but as soon as I stopped trying it would return.  I was extremely emotional and I felt more confused than ever before and kept doing silly stuff like trying to put the coffee in the fridge and trying to put the sugar in with a fork, when I was typing I found i was spelling words incorrectly and making far more mistakes than usual. This is still happening today as I write now.

(I have found difficulty in remembering enough to accurately describe what I am going through so ive taken to writing it down as it happens, remembering is probably the wrong word but I hope you know what i mean.)

Anyway, I told my line manager that I suffer with clusters and he seemed very sympathetic, he hadnt heard of them but I think he could tell I was in genuine distress, I am now required to get a medical certificate to show that I can work (I fit solar panels, so there is an element of danger with working at height etc). He now has to report it to the MD who will decide what he wants to do, the thing is I have been working there for a week, I have a probationary period of 3 months and didnt disclose it in the medical history section as I wasnt aware of it at the time of interview. From a legal point of view I guess its easier to just get rid of me now rather than employ someone who may need regular time off. I have worked all my life since leaving school and have managed but this time it has hit me for 6, I cannot take much more, I feel depressed, Reality bites.

I have made an appointment with my GP on Monday as I want to talk meds (Oxygen being number 1) and I havent heard anything from the neurologist as of yet but we are talking about the NHS it could be months. I also developed a lump at the base of my spine yesterday which is painful (like a bruise but it makes my leg twitch) so I can talk to him about that too.

This forum has been a blessing and I dont know what i would have done without you. Thanks all.

Share this post


Link to post
Share on other sites

oh boy, that's hard to read.  so sorry. your emotions have been completely beaten up in the last few days.  starting a new job is hard enough by itself.  then the worry, the hope, and then the solvent -- like getting hit by a car as you're innocently crossing the street.  and of course the red bull is full of caffeine, which isn't good for already jangled nerves.

When you see your doctor, could you possibly print out this report of the European guidelines for treatment of cluster headache and bring it with you:  http://www.efns.org/fileadmin/user_upload/guidline_papers/EFNS_guideline_2006_cluster_headache_and_other_trigeminal_autonomic.pdf

On the fourth page, it says: >>Inhalation of pure (100%) oxygen via a non-rebreathing facial mask with a flow rate of at least 7 l/min (sometimes more than 10 l/min) is effective for stopping cluster headache attacks [33,34]. The inhalation should be in a sitting, upright position. There are no contraindications known for the application of oxygen (Table 5).<<  The flow rate should be higher than what it says there: at least 15 lpm.  But most regulators that go to 10 will probably go to 15.

Many people have also created their own oxygen systems, using tanks of welding oxygen and a regulator and mask they buy in other ways.  So this should also be an option for you.

If you can, I would recommend starting the anti-inflammatory vitamin D3 regimen (see a link to that in my first post to you) and perhaps ordering some rivea corymbosa seeds so you can bust if you decide to.  I think the site www.allsalvia.co.uk sells them.

Stick with us, Damien, and we'll stick with you.

Share this post


Link to post
Share on other sites

What CHf just said, although I'd like to just add an exclamation point: !

               

Share this post


Link to post
Share on other sites

Evo,

Some of what you describe I am familiar with. So, perhaps a word might help.

The shakes: Yep. Doing a 'bit block' at the dentist. "Just hold your teeth tight together and don't move." Meanwhile, the jaw is on its' own mission and trembling uncontrollably. Sometimes it is like being cold, but I am not cold, just shaking. Almost vibrating all over.

Typing: I am terribly dyslexic lately with a keyboard. IE: trreilby, teh, and so on. I spend as much time correcting as writing.

The Knot: Some of us get a knot at the base of the skull or similar location. Neck and shoulders mostly. For me, this pain will continue even between hits and so will the knot. If you are talking about the Lumbar area, I don't know. Hopefully your Doc can help with that one. For my neck, I use a heating pad for much of the night. If my days are bad, I use it then too. My son, who is an excellent back massager, can't get the darned thing worked out. Just time off from some head pain and the ole heating pad have to suffice.

O2 will be your life saver. I vote for a regulator that goes up to 25LPM. When in high pain, hyperventilation starts and then 15LPM does not supply enough. For me. As the pain reduces, so breathing rate and 15LPM is a finishing point.

Breath DEEP! Expand your lungs up, down, and sideways. Pull your diaphragm down. Focus on your breathing, not your head. It helps. Also. exhale FULLY. Push hard and then start again. Picture a beach ball, fill it up in all directions and then deflate it with determination. When the pain is gone, continue for as many minutes or breaths as it took to kill the pain. Otherwise, ya might get hit again and soon.

All the best to you. These guys know a lot and there is a lot in storage on the site.

spiny

Share this post


Link to post
Share on other sites

Thanks for the help and support peeps, I need it at the moment. In my ealrier post I said the word remember what I meant is I lack the words to explain it.

However, today I tried to explain what is happening to my sister who basically told me to take a pill and get over it, wasnt interested in knowing anything about it and as far as she is concerned the name says it all, cluster headaches - headaches in a cluster.

I have decided to try and write an explanation for what happens, this is not a headache this is something else. I will do my best and post the results.

Also the pain is in the lumber of my back, completely unrelated to ch but a pain in the backside literally  ;)

I have decided that im going to stick this out for the rest of the cycle and just document as much as I can, I feel frustrated that it took so long for a diagnosis and if what I write helps me or anyone else in the long run then it will be worth it. My children may end up with this.

I will be looking to bust the next cycle though and have already set the wheels in motion but I need to do this the right way, I feel I am right at the beginning of a steep learning curve.

Share this post


Link to post
Share on other sites

evo, print out the OUCH letter that I have attached and show it to your sister.  If she takes the time to read it, great!  If not, you should rest easier - you tried.

OUCH_letter.pdf

Share this post


Link to post
Share on other sites

Ive tried to get her to read wikipedia and she wont even do that, besides these things nowhere near do this condition justice so ive wrote a poem.

My monster

I have a monster, he lives in my head,

When he is awake, I sometimes wish I was dead

He sleeps in a space, between my brain and my eye

when he is awakened, ill have no choice but to cry

he awakens like thunder, with fury and rage

my eye is his door and my skull is his cage

Today i will tame him, IÂ’ll show him whoÂ’s boss

By the end of round 1, Its already a loss

I cannot win, I just donÂ’t have the balls

He swings back and for and bounces my head off the walls

He makes me beg to an invisible force

And keeps me that way until heÂ’s run his course

he claws and he tears and he screams to get out

one day he will, of that ive no doubt

But thats no good to me, Ill already be dead

The only way out , Is a hole in my head.

Now that is not a headache.

Share this post


Link to post
Share on other sites

Has your sister seen you have a hit? If she has and she's still so heartless about it, please, allow me to educate her, with my fist.

A lot of people don't refer to them as cluster headaches, but cluster attacks. Because headache does not describe accurately what we have.

*hugs* I wish I could offer more, I'm glad you found us, and hope your cycle ends soon!

Share this post


Link to post
Share on other sites

Evo,

"He awakens like thunder....."

I love that verse. Sooooo true!

Pixie is right. I have stopped calling them headaches because that puts a verbal limit on someones understanding the condition.

Course, you could take two wires, attach a clip on the end of each. Strip a bit off the other end of each, stick one into each hole of an outlet in the kitchen, then clip the other end of each to her eye. Just for a split second. That AC current would give a short jolt and describe part of the pain nicely.  ;) Then, she might get the picture, just a little.

Know where you are in trying to explain. Perhaps seeing the National Geographic specials that cover some of this hell would help too. My husband is very supportive, but something about seeing a grown man in such pain opened his eyes, WIDE!

Otherwise, I have given up. I just say that I have a condition that affects so few people in the USA, that it would be hard to explain. Then I let it go. Never have I been able to get the point across, even when I used the 'suicide headache' monicker.

Best of luck to you. Let us know how the Dr visit goes. You are not giving that up, are you? I still say go for the O2 at least. It will keep you a bit more sane. Then, if you want to ride one out for the writing you can, but you can put the beast back in his cage and quieten his rage when you must. Just a suggestion.

spiny

who wishes you all the best and speedy release from hell

Share this post


Link to post
Share on other sites

The bit about the electric wires I liked, I think she would be part way there then. good explanation why couldnt I have thought of that  ;)

The poem is going to be an ongoing process and when I find the words to describe it more suitably I'll change it and adapt it as I go.

Today has been a better day, kip 1 all day, no red bull but the cravings for coffee will not stop. I didnt even think of the caffeine for the change in matters but now its been mentioned I can understand perfectly. Thanks for that.

The doctors is all still going ahead as planned the employer wants a medical certificate and I want oxygen.

I went to the opticians today because I want to know about the ptosis, miosis and any swelling of the eyelids. (the doctor asks me about them but ive never really looked in the mirror when in the middle of an attack.

When i mentioned to the optician about the clusters he said that it was a standing joke about the circle between them and doctors. So how does the miosis thing work? At the moment im assuming that it is only evident during the attack which is why its never been picked up before?

I dont know if any of you have a vision express store near you but Ive never seen anything like it, I thought id go there because they have up to date kit and walk up appointments, what a mistake. Its like a cattle market, they herd you from one room to the next where you finally see an real optician and he says four lines to you then ushers you off with a saleswoman to pick out your new glasses.

My four lines were "Your a little bit short sighted", "are you sure thats not better?". "The middle of your eyes look suspicious so Im going to refer you for glaucoma but let me be clear, I dont think you have glaucoma" I guess they dont have a tick box for ch.

then quick as a flash hes off to another room and im left with the saleswoman, no time for questions, just a shop full of glasses for you to look at. £25 for the test and an almost guaranteed sale afterwards. Dont get me wrong i may very well be a little bit short sighted (I dont think i am but there the supposed experts) but thats the least of my bloody worries. I was glad of the referral though, if I stack up enough maybe i'll see a neuro this side of christmas.

Share this post


Link to post
Share on other sites

Morning Evo,

Good for you and the O2 :) It will be your best friend sometimes.

I just went through a whole days mess with eyes two weeks ago. ::)

Ptosis and miosis occur during an attack and usually disappear when the hit is over. But, ptosis can become permanent. It means that your eyelid droops as I am sure that you know by now. The miosis is a failure of the pupil to dilate and contract at the same rate as the un-affected eye. You would probably still be able to see this in low light after an attack is over. Use low light and a mirror. Cover your eyes loosely without touching the lids while facing the mirror. When you remove your hands, the CH eye will not dilate at the same speed or to the same degree. For me, this will last for several hours after and if you are getting hit a lot, you may be able to see it most anytime. My CH side will not dilate to the same degree. So, with shadows or after a strong hit, it will continue for hours. Easy to check yourself and when you are not in full blown pain.

The ptosis can become permanent. The miosis goes away (for me) when I am PF for a day. Good luck!

As for the vision express thing, I had a similar experience. Bounced around all day and a boatload of scratches for my trouble. End result, no answer!!!!! Well, except that they saw I had Horners Syndrome from the CH. Not a big help.

Stay safe and stay in touch :)

spiny

Share this post


Link to post
Share on other sites

Thanks for the info, its pretty much as I figured. Would be nice for an optician to witness the miosis so at least that way they cant tell me its all in my head.(because i didnt get chance to speak to the one the other day, I dont know what he saw or didnt) Im thinking about provoking him with alcohol and then getting another eye test but I dont think I have the courage to wake him up.

I have tried to examine myself but they both look the same today or the difference is so small that I cant notice. Im not going anywhere, I have much information to gather and who else is going to answer my questions  ;)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×