New User Questions

[atama]

Hi everyone!

I have suffered from cluster headaches for a few years now, but only recently diagnosed after the frequency of attacks per day went from 1 to around 3.

I used to get these headaches at the exact same time each day, and typically they would last from May/June until late summer. Last year the cluster period lasted into Oct!  :'(

I was at the doctors a few weeks ago and as usual, due to the blocked nose and teary eye symptom, was being fobbed off with this being an allergy...probably pollen.

After another week of agony I went back and saw a different doctor who, although no expert on CH, listened carefully to my problem and made the right diagnosis. he printed out some info and i knew straight away that this was the problem i've been having. Although it's a relief to finally be heading in the right direction - it is quite scary! I have been reading about people who suffer 8+ headaches per day and also chronic sufferers and am worried I will get to that stage. If you are reading this, and you are one of those people, my heart goes out to you!

I have ben given Verapamil 80mg twice per day and Zomig Zolmitriptan nasal spray, i specifically asked for the spray initially because I am a teacher and if I suffer an attack during a lesson it's easier to be able to take a nasal spray that an injection.

I have been taking Verapamil for just 4 days - how long does it typically take to work - if it is going to work at all?

Also, UK patients: how many nasal sprays/injections do you get from each prescription? I get 6 and have found this to be a problem. I was given the medication on Wednesday, and by friday when the doctor's closes I had used 3. I found that if I caught the headache in time it would do the trick and I managed the rest of the day/night (slept very well after taking them late) However, on Friday night I suffered an attack and took one, on Saturday morning the same and on Saturday night as well. Now I have none left! If I suffer an attack today I will have to endure it...not good but it's Sunday and I am home alone so I will just have to ride it out. However, tomorrow I am at work and won't be able to pick up a prescription until the afternoon (after work) It's risky! I have taken an odd day of last week and the week before (one was when the headaches started and left work early and was off the next day and the other was after running out of Triptan tablets which the other doctor prescribed first) I can't keep taking time off every time I run out of nasal spray! What should i do?

I am booked in for a follow up in the 2nd week of June, where I will be referred to a neurologist if things aren't looking up. perhaps oxygen is the way forward, then I can use nasal sprays at work and oxygen at home. My headaches are not as predictable as they have been in the past - often they come at night (if i wake up with one it's too late for the nasal spray to work well) but sometimes they come in the morning, or during the day.

I understand how long this post is!  but anyone who can share their experience about anything i have talked about I'd be happy to read it.

Thanks for taking the time to read this  8-)

[shocked]

Hi atama

There is an excellent web site and forum for ChÂ’ers in the UK.

Here –

http://www.ouchuk.org/html/community_members_forum.asp

shocked

[atama]

Thanks - I registered a few days ago. I am just waiting for my registration to go through before i can post on forums.

[MoxieGirl]

Hi atama,

Welcome to the family.

I can't answer all your questions, I had a bad reaction to Verapamil, so wasn't on it that long.

This is a good site, friendly people, with a LOT of information and guidance, you could't be in a better place.

I often think Cluster Headaches are like a massive 18-wheel Lorry (Semi to the Americans) baring down on us at breakneck speed, and all the doctors give us to stop it are water balloons.

First off, most doctors are clueless to what clusters are really like. Doctors think things like a dislocated knee are painful, but I know of someone that had a dislocated knee for 3 days before he realised it because the pain was so inconsequential to his clusters.

Many of us find we are educating the doctors on what clusters are, and what the best treatment is.

Get to a neurologist as soon as humanly possible. They can sometimes be better than your run of the mill GP. Thankfully, I have a great doctor who has a friend with Clusters, so she diagnosed me on my first visit and I was seeing a Neuro within weeks.

Many people here will soon be telling you to get oxygen, and I couldn't agree more. Although I don't use it personally, and not sure if it'll be able to help with attacks at work, but will help a lot at home.

MG

[atama]

Thanks! Yes i agree. My GP had a kind of frowny face on like he was thinking really hard. But the important thing was that he was open to getting to the bottom of it. When I read the info he gave me - everything I had been saying was on there. i tried to think of every possible symptom that might have anything to do with it and that seemed to get the right diagnosis.

I have been doing some research since this post this morning and based on what i've read I think my dose of Verapramil is quite low, it takes about 10 days to kick in...and before I get my nasal sprays/oxygen I can try Red Bull  8-) although i have to be careful as i shouldn't drink too much with Verapramil. I will let you all know how I get on. 

[Bejeeber]

due to the blocked nose and teary eye symptom, was being fobbed off with this being an allergy...

I think that actually should've been a major CH indicator for any doc with a passing familiarity with CH. Speaking of which:

Get to a neurologist as soon as humanly possible.

I'm going to try to go one further here and suggest you specifically seek out a headache specialist type neuro, since garden variety neuros often don't know enough at all about treating CH. Kudos to your second doc for doing homework enough to make the CH diagnosis.

I think my dose of Verapramil is quite low

Sounds that way to me too, and I think you'd be hard pressed to find any headache specialist prescribing it that low.

often they come at night (if i wake up with one it's too late for the nasal spray to work well)

This could be an instance where an injection form triptan (imigran/imitrex) would likely trump the nasal spray and be able to abort the attack. Another advantage to injectors with an accessible syringe is that you can stretch your doses out and make them last, which is critical for so many CH'ers, and I see it is for you too. I guess you'd want a combo of imigran inhalers and injections so you could still inhale while teaching....? Here are details on how to stretch injection doses:

http://www.clusterheadaches.com/imitrex.html

perhaps oxygen is the way forward

I believe your research results there are spot on. 

You may also want to look into the vitamin D3 regimen which many CH'ers believe has helped them with prevention, and IMO you'll DEFINITELY want to learn about "busting", which is a much more effective preventative than any prescription RX, and is something many of us CH vets who have tried and eventually sworn at every med, now swear by.

Here are what I consider very important (and also very engaging) links for an easy overview of busting (OK you're a teacher and you don't need easy, but with CH attacks tearing through your grey matter, maybe even you could use a break from the researchy technical stuff).  8-)

A Newsweek (major mainstream US news magazine) article about busting and CH:

http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html

A National Geographic episode on CH and busting, profiling one of our forum members, the now movie star  "Hipshot" who regularly interacts with us here (you'll meet him and LeeAnn when you come to the Clusterbusters convention in Chicago in September. Hey MG from the UK is attending  ). Dan's feature begins in this video at around 30:50.:

http://www.youtube.com/watch?v=LjteSZu_JqM

A video talk by the founder of this site, Bob Wold, on busting and his long experience with prescriptions vs busting:

http://vimeo.com/10918637

[atama]

Hi Bejeeber

Thank you so much for all of your advice and links for me to look at!

I am not sure how to do lots of quotes like you have so I hope this reply makes sense.

The eye watering and nose blockage does seem to be a major symptom but i didn't really describe it well enough. I probably didn't even mention the eye watering to the doctor - i just assumed that my eye watered because it hurt a lot! :'( I told them many times that it felt like I needed to blow out and clear my nose for the pain to stop and felt pressure in my sinuses. I think the GP who finally figured it out might have asked me about eye watering for me to finally mention it.

The GP checked a reference book when prescribing the Verapamil to see what dose to start on...so I am wondering how much he knows about it...

I like the idea of vitamin D and I have read about that on the other forum. MoxieGirl has helped a lot via PM and also gave me some info about alternatives which i think is what you mean by busting. All of the terms are new to me  :

I am now going to spend some time looking over those links! i might see if i can get my follow up moved forward slightly and push for the referral. I will certainly look into finding a headache specialist.... being a test subject for medication is expensive :-/

I do love my doc for hitting the nail on the head (no pun intended) It's a new doctor's as i moved house last year although it's the second doctor I saw at that clinic. I spoke on the phone first (something they do to stop you actually coming in to the clinic) and he told me to come in and spent some time listening. He probably did some research between the call and the appointment and asked the right questions. Very grateful!

[Bejeeber]

MoxieGirl has helped a lot via PM

Super glad to hear you have a good UK pal personally coming to your assistance now.  [smiley=thumbup.gif]

[MoxieGirl]

MoxieGirl has helped a lot via PM

Super glad to hear you have a good UK pal personally coming to your assistance now.  [smiley=thumbup.gif]

Ahhh shucks Beejeeber, just being me.

Atama,

Busting, yes, it's our code for taking LSD, Mushrooms or Seeds - or perhaps any non-prescription remedy that actually works.

My eye barely droops, and yet it is a tell tale sign (supposedly) of cluster headaches. Eye and nose waters, but I always thought it was because the pain made me cry. But over time I figured out that my eye and nose dripped long before I started crying. Crying usually comes after the attack has stopped (well, used to before busting).

I do sometimes get a really bad blood shot eye after an attack.

I've used several ways to describe the pain over the years to friends. One way to drive it home, is to ask the person you're talking too if they've ever had a muscle cramp in their leg. Talk about how the cramp comes on suddenly, no warning, and hurts like Hell. For the duration of the attack, you can't move or think of anything else but the extreme pain in your leg. Now, imagine that exact same pain, times 10, in your eyeball. Same unpredictability, same full on pain, then when it stops, it's gone.

Recently, to describe a cluster, I remind people what a brain freeze headache feels like. I like this one because it is the same nerve being triggered by a cluster as a brain freeze - the Trigeminal Nerve. Now, take that brain freeze that lasts for 10-20 seconds, multiply the pain by 100 and extend it out for an hour or two, and you are approaching a cluster headache.

MG

[atama]

I always assumed that eye watering was just pain related, my eyes are pretty sensitive anyway to wind, sun etc and water easily. I haven't really had eye drooping as much this year...but usually I can barely open my left eye at all.

When I had an attack during lunchtime at work the other day I sat and described every moment of the headache to my colleague and good friend who kept saying "you need to go get an MRI - seriously!" I did find it useful to sit and describe it to someone as it was happening and perhaps that's what helped me describe it to the GP.

bejeeber: I have watched/read the links you sent! Thanks! All really useful and interesting information  8-)

[MoxieGirl]

As a writer, I often find writing down descriptions of cluster atracks very beneficial. For me, writing gets it out of my head. I have a pain diary I really need to unpack and start using again. Talking them over with someone is good too.

BJ knows all the best links.

[Jubal]

Verapamil has helped me quite a bit. I haven't had any side effects. It took me from chronic hell to a much, much more manageable situation.

It didn't work right away, though. Gradually the attacks became less frequent and I started having some 'clear' time when there was no pain at all.