Roadie

I tried never to get too cocky about the fact that I'd been in remission for a long time. 14 years without a full-blown CH attack and no more than a 4-week bout of shadows in an 11 year period. Sadly, in spite of my humility and decade of near-complete remission, the shadows came back with a vengeance last June. Still no full-blown attacks to date but not sure how. The shadow bout is now 9 months old and has ramped up really badly in recent weeks. I have days like today where I constantly feel like attacks are trying to start. I'm using 480mg of verapamil but am not sure that it's doing anything at all.

Hi Bilal, I’m sorry that you’ve had to find your way here, but welcome anyway. Certainly, what you’ve described does sound like CH and quite similar to how I remember mine starting. I was 18 when mine started. I was woken from sleep one morning with a horrible piercing pain behind my right eye that I just couldn’t ignore. It probably only lasted 15-30 mins and then I went back to sleep. Another one struck during the day a few days later. They became more frequent but then died away within 2-3 weeks. My first few bouts were always like this. Your doctor sounds pretty switched on. He has looked to rule out hemicrania continua by trying indomethacin and has then gone for the standard front-line CH treatments. But I agree with CH Father – 80mg of verapamil daily is probably too low to be having any sort of effect. I’ve used 700mg daily in the past. I can think of a handful of really appalling CH attacks I’ve had over the years, but I reckon that the bulk of my attacks would have been 5-6 on the pain scale and they are manageable, especially if I’m sitting up or able to walk around. It took me a long time to realise that lying down made them much more painful. So your description sounded very familiar to me. Personally, I haven’t had a full CH attack in 14 years, but nowadays I suffer with bouts of “shadows” which can last for more than a year, and I never truly believe the CH attacks are gone forever. For me, sumatriptan injections worked very well and the nasal sprays were also good, if a bit slower. It’s possible that verapamil actually aborted 2 of my bouts, or at least controlled them. I hope it’ll work for you but you should definitely be talking to your doctor about increasing it. You must do this under supervision and with regular ECGs. Good luck, Joe

I've been having shadows for 8 months now following a remission of 11 years. I also get a blocked right nostril, which in itself is can be very painful, both while it's happening and once it's cleared because it all feels inflamed. I haven't had a full CH attack in the whole 8 months. I get periods where it improves for a few days and others where the shadows are dreadful for a while. I've been through this many times since around 2000. Prior to that, I went through 7-8 typical episodic bouts of CH. Since I started having these shadow bouts, I've only had 5-6 full CH attacks and some extremely long remissions. It might be of interest to you or anybody else reading. I'm sure these symptoms are common amongst CHers but you don't often hear them described.

Also extremely sorry to hear this. I know your disappointment! Though it sounds like you've had it far worse than me in the past. I've also enjoyed a long remission - almost 14 years without full CH attacks (and counting) and 11 years with virtually no CH "activity". In my case it seems that the nerve, or nerves affected by CH have become active and give me daily shadows, pains and other unpleasant symptoms without any full-blown attacks to date. This started in June last year so I'm seven months in and every day I'm convinced the attacks are starting. I believed CH was a thing of the past for me. I had a septoplasty op in 2004 and had three children while in remission. I used to wonder whether the op had fixed me, or perhaps the complete change in lifestyle that being a father brings. My hope now is that the pattern will continue. I had a bout of shadows that began in late 2003 and continued for more than a year, save for a few weeks here and there where the shadows subsided. Then in 2006 a bout of shadows began that lasted about 6-7 months. If this IS a pattern, when this bout ends I might get another long remission. They say that remissions lengthen with age. Let's hope that's true for you too. I wish you luck.

Hi Peggy, I know what the rule book says about HC but the condition was only recognised in the past 30 years so who's to say the rule book is definitive? I haven't even spoken to another CH sufferer who has pain all day for several days at a time. That doesn't mean it can't happen - I've just never heard of it. But HC is supposed to be continuous with no relief unless the sufferer goes into remission. My headaches were textbook CH for the first 11-12 years. If you looked at it over the past 7 months, it looks much more like HC, but I do get breaks in the pain. Today the pain is back, and if it continues, I'm going to ask to try indomethicin as well. At least it'll rule out HC if it doesn't work. Please let me know how you get on. Good luck! Joe

I've always believed that CH was strictly unilateral. My attacks always start with a pain behind my right eye. Pain between the eyes is something I've never heard described and I've been talking to other CH sufferers for 20 years now. I'd accept it if somebody said the pain had spread across the forehead during a bad attack, but for an attack to start in the centre of the forehead is certainly unusual. Hemicranial continua is also meant to be a unilateral pain, but hey, I'm no doctor as they say! I've also suspected this in my case but I've actually had pain free periods during all of the past 7-8 days so it seems unlikely. The only thing is that I'm now using verapamil, which can help HC, so the improvement might be due to that. Keep us posted, Peggy. I'm really interested to hear how you get on and obviously hope you get some relief very very soon. Joe

I think the confusion arises from two things - firstly, I had definite bouts of ECH for at least a decade. Secondly, I have pain-free periods, albeit fairly short and infrequent. The other problem is that I have acid reflux so they will need to do an injection for an indomethicin trial and I have quite a long journey to my neuro. We were waiting for a bad day, then the pain improved for a few weeks, then Xmas happened, then verapamil was chosen as the first drug to try. I agree that we might need to go back to square one. Whatever I've got doesn't fit the HC description perfectly, but at the moment it is more like HC than CH.

Some days you'd say yes. For much of the past 6 weeks you'd say yes. But yesterday, for example, I found myself virtually pain free for a large part of the day. Last night I was completely pain free for at least half the night. My neuro says it can't be HC if I get any pain-free periods. I think they should try indomethicin anyway, just to rule it out.

This is an interesting description of CH. My CH always started in the same ways as described above. I'd get struck during the night. My first thoughts would be "No - no way! "This can't be happening out of the blue like this... again". And then I'd have to come out of denial and deal with the attack. My attacks always began with an uncomfortable feeling behind my right eye that I just felt I needed to get rid of. But I could do nothing to stop and and it would rapidly get worse. Normally, within ten minutes the attack would be excruciating. Back before I knew what my headaches were, I'd neck some pain killers and ride it out. They'd normally be at their worst for 30-60 minutes but they wouldn't end suddenly, as some people would describe. They'd begin to ease and gradually fade away over the space of say 30 mins. During my first few bouts I don't remember having any pain between attacks but I would get shadows and I'd often wake with a nagging ache behind my eye that'd make me jump out of bed. Like Fella says, I'd avoid lie-ins and I'd try to sleep quite propped up. Nobody's ever explained to me why it hurts more to lie flat when you're in cycle? My bouts of episodic CH would last 2-3 weeks, except my bout in '99 that lasted about 6 weeks. My remissions began to lengthen too. My bouts are different now and I question whether i still even have CH. I began to have bouts of shadows about 18 years ago. These would be episodes where I'd have shadows and constant pains and sensations in the CH part of my head. I was convinced my attacks were coming but they mostly didn't. Only on one occasion during these bouts of shadows has a real CH attack broken through, and that was after a heavy night of partying. It was also 14 years ago now. In 2002 and 2003, bouts of "normal" CH began in the "normal" way, i.e. a sudden attack during the night without warning. These went away fairly quickly, possibly because I used verapamil but my "real" bouts were always short. Since my last full CH attack, I've had bouts of shadows in 2004, 2006. 2010 and the current one that has been ongoing since June 2017 (yes - I had a blissful 7+ years of full remission). Shadow bouts vary in length. The shortest was a few days. The longest was over a year (they called me Chronic, in spite of me not having full attacks). The interesting thing as far as Peggy is concerned is that I am in almost constant pain. Today, for example, I have a burning, piercing pain in my nose and eye that feels like a hot screwdriver is being pushed up my nose. Some days this is more of an electric buzzing feeling. Other days is is a burning/piercing or a squeezing and twisting feeling. My right nostril also blocks repeatedly throughout the day and can become severely painful. I also get "shadow attacks" that begin to build like a real CH attack but they then level off at about a 2 -4 and can sit there for 4+ hours. I wake in the night with a piercing feeling in my eye but no CH attack. I woke this morning with the old nagging ache that used to be a warning that an attack might come, but it didn't. I generally sleep well and get pain free nights. In November I had a good 2-week period after a holiday where it felt like I might be back in remission but it didn't last. So, over the past 6 1/2 months I have had virtually no pain-free days whatsoever. I have a supply of O2 that I have tried just once. I have several Sumartriptan injections and nasal sprays to hand that remain untouched and I've very recently started verapamil to see if it'll knock this out. Sorry - it's a long post but the detail might help Peggy and I'm always on the look out for somebody that might recognise my symptoms. My current neuro seems pretty confused!

Hi, many thanks for this, CHF. I wonder if you can get anything like this in the UK? I'll read the threads. I also had an ONB injection back in 2006 but it didn't seem to do anything. The problem is that, like now, I wasn't having attacks then. Just horrible incessant shadows. There's no doubt that my CH has changed in its nature over the past 15-or-so years. The question is, has it changed into something else and what will work for it now? Currently having no joy with verapamil.

Please, whhat is a Jesus Shot?

...while we're on the subject of strange symptoms... I'm in a bout of shadows that, after nearly 7 months, still hasn't resulted in a CH attack serious enough to try and abort. (I've always felt that you shouldn't poke a sleeping dog, if you get what I mean, so I won't use sumatriptan unless I'm desperate.) Yesterday I experienced aura for about 30 mins in the morning. This was followed by a piercing headache on the non-CH side of my head that lasted a couple of hours. Bad, but not debilitating (and similar to migraine-type headaches that I get but that have almost vanished since this bout started). During this headache, my CH shadows completely disappeared. But once the headache had gone, my CH symptoms returned.

Ditto this!

Shadows can mean several things to me. Yes - it's the feeling that an attack is coming on, but often it doesn't. These can last for a few minutes or simply just be sudden bursts of CH pain. It can also be the feeling that you've been hit with a low level attack - one that isn't bad enough to treat. I get these a lot at the moment. It feels like an attack is starting but then it levels off and never really gets going. The feeling can linger for hours - sometimes even the whole day. After an attack, I'll get constant "reminders" of the attack, as if my body is suppressing the attack but it's trying to push through again. I call these 'post-attack' shadows. Lastly, and most bothersome to me, are the bouts of constant pains I get. I've had lots of these bouts. Some days I'll just get repeated nasal blocking on my right side accompanied with sore/burning pain that worsens with each cycle of blockage. I'll get days where I simply have a continuous burning/piercing pain behind my eye. I'll get days where I have the nagging ache in my head that I get with CH attacks but never serious enough to be a real attack. Throughout the whole cycle, I'll be in constant fear that attacks are just about to start but this has actually only ever happened once or twice. These bouts of shadows usually don't result in full-blown CH attacks. I recently spoke to another CH sufferer in the UK who recognised these symptoms in himself.

Now there's a name from the past. I'm sure I met Ben at a CH meeting in either Birmingham or London, but years ago. I hope he's well.

Hi CHFather. Thanks for this advice - very helpful. Hi again Leo. That's really interesting to hear that it took you three attempts (and three bouts) to get the required results. I know one thing - there's no harm in trying. Compared with the alternatives, the D3 is such a great choice... if you can get it to work. I'm currently taking verapamil and using the D3, minus calcium. I'll keep you posted but it'll be hard to know what's working if my symptoms do improve, given that I'm using both. I've also just realised that I'm only on 240mg of verapamil daily. I was on nearly 700mg a decade ago so I might have some way to go. Whats more, I'm more than 6 months into this bout but still have not had a real humdinger of an attack. My attacks have been very mild and are normally spaced out by a couple of days (although I've had short periods where they've been daily). My diagnosis remains "probable cluster headache" but there's every chance it could be something else. It's certainly nothing like my first few bouts. Many thanks for your advice. I'll keep an eye on this page.

Hi Leo, I'm interested in what you've said here. Out of interest, why did you drop the calcium? I haven't had any notable success with D3 so far. I've started and stopped a few times. At one point, it felt like it might be making things worse and I've wondered whether the calcium could be a problem. After all, verapamil is a calcium channel blocker so presumably you wouldn't want more calcium in your system (this is my fuzzy, completely unscientific take on things). Brief history (somewhat unusual) - I'm in the UK. I originally had quite typical ECH from 1992 - 1999. I then began to have bouts of shadows around 2000 that would strike perhaps a couple of times a year but didn't bring attacks. My shadows became chronic around 2004 and I ended up using verapamil permanently until 2008-2009. (Admittedly, I was back in remission by 2007 but I decided to taper off the verapamil very VERY slowly.) Between September 1999 and April 2004 I only had 4-5 full-blown CH attacks and, with one exception, these came out of the blue and not during a bout of shadows. During bouts of shadows since then, I've experienced what seem to be low-level attacks but I don't normally abort these. I had a fantastic 11-year remission, only punctuated with a short bout of shadows in 2010. This ended in June this year and I've been experiencing shadows and low-level attacks since then. These have worsened in recent weeks and I've finally decided to go back onto verapamil to see if it helps, but I'd like to try and combine it with D3 if there are no contradictions.

Hi everyone. I'm not entirely new to CBs but I haven't been here for a decade and have a new user name. I have to say that I used to think that smoking cannabis, or people smoking it around me, made my attacks worse when I was in cycle. I used to smoke a lot of it when I was in my late teens and early 20s, which is when my CH started. I did wonder if it was linked. I was also a regular tobacco smoker then. My last 'normal' bout of CH was in 1999, a few months after I stopped smoking and, by then, I'd all but given up cannabis. I'm not suggesting it cured me. I began having frequent bouts of shadows instead with just a few CH attacks breaking through over the years. Over the past 6 months I've been in one of these bouts of shadows with what seem to be low-level attacks. My partner smokes weed at home sometimes and I feel it hit me behind my eye and makes my head feel worse if I can smell the smoke. Make of it what you will!