Having had Cluster since I was 14 which remained undiagnosed until I was 43 years old, I have a litany of stories both pre-diagnosis and post diagnosis of GP responses to the condition. Whilst it is always easy to be critical in a very negative way I believe it may be of value to try a more positive approach. Clearly there still remains a lack of GP knowledge about the condition, which considering its rarity and specific nature is not entirely to be unexpected, so maybe we could assist ourselves and other future sufferers by changing this situation.
What has occurred to me is that a collection of sufferer's stories about negative GP responses may actually be useful if presented in an appropriate way. So the purpose of this blog post is to offer an opportunity for people to relate their own stories here. This could be therapeutic as much as anything else but I will then have a data base from which to work and try to produce a resource to help inform more GPs about this specific problem.
We would need to make such stories brief but pertinent and they would have to be only about Cluster Headache. I will provide one example of my own to try and show a format.
1997 Undiagnosed Cluster Headache [state whether you were diagnosed or undiagnosed at the time of the event], Cambridge, UK. [It is open to sufferers from other countries but the initial focus will be UK]. Attended surgery with full blown intense cluster headache. Hardly able to speak, difficulty in raising my head. Detailed my condition at which point the GP asked, "Well what do you expect me to do about it?" I responded that I wanted something to manage the pain and the GP suggested Paracetamol. I believe that the GP was convinced I was exhibiting drug seeking behaviour.
This sort of short precise entry with a minimum of personal opinion is the most useful. If anything it will help us to build a picture of the extent of the problem, maybe identify if it is getting better or worse and perhaps identify if one type of negative response is more prevalent. I am not sure if I will receive any support for this or, indeed, if it has been attempted before. Just feel I need to do something as am currently in a major attack and last week had to spend five hours just trying to get my current GP to issue me a prescription. Enough is enough!
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Hi, I donot suffer from cluster headaches just migraines so I won't contribute here, but I fully understand your predicament and irritation at trying to be understood/heard/helped. I hope you get some feedback on here
I was the exact same as you I have been having them since I was 12 years old my own doctor said it was cluster headaches then on December 20th 2015 I went to see a neurologist he diagnosed my headaches as Chronic Neck Pain & Chronic Migraines
Suffered from cluster headaches for many years and was diagnosed by a junior neuro purely by chance when seeing them about other health problems, have been lucky enough to have been given a gammacore by Dr malin? (sp) in london but cannot for the life of me get my GP to prescribe me the injections I need, I get up to 8 attacks a day yet the GP refuses to prescribe more than 4 injections a month even though the dr in London wrote saying give me as many as I need ( up to 2 a day) my GP surgery is obstructive over all my husbands nad myselves health problems so this is not a surprise. I live in blackpool UK, If all doctors were as compassionate and helpful as Dr malin. life would be a lot more bareable
Thanks for your story. H63L below tells it like it is. COMPLAIN like hell and demand to know on what ethical grounds the GP provides 4 injections a month. Do follow H63L's advice. You cannot let this stand.
Very Very right. On What Ethical Ground the doctor refuses to provide the relieve that a person needs during the C H cycle ??????????????????????????????????????????????.
Have you considered changing your GP. Or perhaps DR Malin would be willing
to contact him for you. My injections are now on repeat prescription. Only 4 at a time
( 2 days worth) but as soon as I collect them I put the prescription in again. My clusters are episodic, so when I am having a remission I continue to collect the jabs for a few days, so I have a little supply to tide me over when the next one starts.
You could complain about you GP to the appropriate governing body (Not sure where that would be in Blackpool) stating that he refuses to follow the specialists advice and give you the meds you need.
This is going to sound melodramatic, but any long term sufferer who managed with support may understand, I literally feel like I owe my life to OUCH UK, the helpline has saved me a few times and the forum gave me somewhere to turn in a very bleak time, they made it possible for me to visit the lovely dr in london and thus get some relief, if you are not already involved with OUCH UK either forum facebook or helpline, let them helpyou. they are amazing
My doctor diagnosed trigeminal neuralgia (very similar to cluster headache, but with a different cause) and prescribed gabapentin for it, along with cocodamol. Neither of which worked. After that I was prescribed every painkiller you can name with no joy.
On one occasion I was actually taken to hospital and the best advice I got was to increase the dose.I was already taking far more than the recommended dose out of sheer despriration. My GP then sent me to the pain clinic and I had an mri scan and a nerve block procedure, which also didn't work. So that consultant sent me to a neurologist and, after nearly 6 years - bingo.
The mri showed that it wasn't trigeminal neuralgia so he suggested sumatriptan injections for cluster headaches, and they work a treat.
I had seen many GP's at my practice over the years and they didn't have a clue. The one who thought I had trigeminal neuralgia got it wrong, but at least she was looking in the right direction and set me on the right road to a diagnosis.
It's such a relief to know there is something that works. The only thing that worries me is that sumatriptan injections are not recommended for people over 65, and I am just coming up to 63. I am dreading them being taken off me. Life would be unbearable again.
Hay dear, God almighty will find some solution to the problem and we all CH people will be happy again.
My question is that have you heard of any person who did operation of this thing and got rid of this CH stuff or have you talked with your doctor about the operation ???
Sumatriptan injections are not available in my country but the tablets are available but they take almost 45-60 minutes to work and you know what i mean by 45-60 minutes of living hell that the life becomes really
Hi mustajabak, We have talked before on the NHS site. I'm so glad your attacks seem to be a bit shorter than usual. Any relief is better than nothing.
I don't know any one who has had the operation, but I did speak to a neurosurgeon about it. He said it was an option for me, but I decided against it because the risks are far too great.
It's a pity sumatriptan injections are not available in your country. Where are you?
Try and take one day at a time. June is nearly over so September is getting closer all the time. Try to be brave, and if you need to let off some steam, I'm here.
Hi 023mjc, How are you and how is your C H. Hope and pray that you must have found some relief. Mine is to start during the coming month and lets see how I deal with it
Hi mustajabak. My CH is not too bad these days as I have found several ways to deal with it. I don't recall from previous posts what meds you have, so I may be able to pass on some helpful information. Also, I have found a wonderful support network on the internet and now have CH friends all over the world.. Please email me at masju@hotmail.co.uk.or send me your email address so I can pass on my information.
My episodic CH has started again on 5th of June and it stays with me for three months
I'll be free from this pain at around 5th-6th of September
I am having two attacks per day and they last for only one hour as for the last 18 years that I am with this XXXXXXXX pain and it used to take almost three hours for each attack to end but this year the attack ends within sixty to seventy-seventy five minutes. I work in a university and live in university bachelor hostel and as soon as the attack starts, I leave the hostel and go to open field so that I can cry out and shout loudly and won't be ashamed of crying being in front of my fellow workers (I believe you guys will excuse me for crying out loudly as you all know the intensity of the pain that CH sufferer has to deal with).
well friends, life goes on and soon the beautiful month of September will start and I'll be happy for the coming nine months of CH free period.
Hi all: I'm the mom of a newly diagnosed 16 year old girl. Although my heart is broken by the intensity of her suffering, I have to count her among the more fortunate since she received her diagnosis quickly. Caveat: We live in the US. The sequence of events leading to diagnosis was as follows: After a cold which included some (as we thought) unusually severe sinus headaches, I began researching and noted the consistency of her symptoms with CH. Went to her pediatric GP, who said she had never seen it in her practice, but after checking online readily agreed my guess was likely correct. Fortunately for us, GP had a classmate in medical school who had CH, so she knew a bit about them. She prescribed nasal sumatriptan and referred us to a pediatric neuro. I requested O2, but she said she would have to defer to the neuro for that script because durable medical equipment requires meeting stricter standards. The neuro appt. was set for the following week.
The script for sumatriptan was only for 6 doses, and not refillable for a month. The Beloved Girl used 5 doses over two days. During the weekend, more attacks led us to see another physician in an Urgent Care clinic. Roughly the same experience as with GP physician: I.e. she had not seen it personally, but agreed with my guess. We requested and received oxygen in the clinic, and this physician re-newed the script for sumatriptan (it turned out that the 6 dose limit is imposed by the insurance company; you can get more if you are able to pay out of pocket).
Pediatric neuro took a long and detailed history and did a thorough work-up checking vision, balance, etc. As I had omitted to mention the one-sided tearing (and he didn't ask), he not believe they were CH due to extreme rarity of occurrence in young females. (Hers also take place during the day, not at nighttime). Then she had an attack right before his eyes, and he was instantly persuaded. Since he had never treated a pediatric case of CH, he referred her to a neuro who specializes in treating headaches in adults. One week later, we have our script for O2, another for injectible sumatriptan (with which relief is almost instant, as compared to the nasal doses which take 15-45 minutes), and another script for verapamil. In addition, he recommended magnesium (250 mg 2x per day to combat constipation) and melatonin (up to 15 mg; Beloved Girl is currently taking 10mg). He said he would add in steroids if she did not get a good response to the other meds. If needed, the first course would be a short (3 day) series of high dose orals.
MOST SIGNIFICANTLY, he performed an occipital nerve block in the office. This was explained as a transitional treatment to bridge the gap between the abortives (O2 and sumatriptan) and the (preventative) verapamil. He said sometimes the nerve block will interrupt the cycle. He also ordered an MRI, MRA, and a sleep study. MRIs are happening today.
After the nerve block, the frequency and intensity of the headaches were greatly reduced. Whereas she formerly got two debilitating headaches per day, she now gets much milder ones which have been satisfactorily relieved by O2, without the need for sumatriptan. In fact, in the 2 weeks since the nerve block, she has needed sumatriptan only once. We attribute most of the improvement to the nerve block, as the verapamil would have needed a few days to take effect.
I would be at my wits' end by now had we not received a quick and accurate diagnosis. It appears we were unusually fortunate in this, and in having ready access to a headache specialist. Since this forum is primarily UK, I'm not sure how helpful this info will be, but I want to contribute if there's even a slight chance it will help someone to get effective relief.
Like I said earlier that I got this CH while I was doing Ph.D. in Mississippi State at Starksville MS-USA and had a vehicle accident. Dr said that I have to live with it for the rest of my life as there is no cure available till date. this year the pain started as usual on 5th June and was supposed to end on 10-15 august. The time of pain start was 5 am and 11:30 am. I used to look at the watch for the pain to come as this CH is very well tuned with the biological clock of human body and comes at the same time every day.
Don't need to mention the intensity, and I suffered for one month waiting for August 10-15 for my freedom from this situation. During the CH cycle this year, I begged GOD to take my life as the pain is too much to handle anymore after these 18 years.
A friend of mine said that try religious person to help you. I went to a local Alim/priest of Muslims (like father in church in Christianity) who deals with evil spirits. Told him that I am suffering with this for the last 18 years and the name of disease is cluster headache.
He said that you are looking for medical help and If it was a medical problem, the doctors would have found the cure as after Dr H B Horton paper in 1932, this problem is well known to the human society.
He said that this is an evil spirit problem and medical will never b able to help.
He said to me to look into his eyes and after 5-6 seconds he said that I can see Evil spirit in your brain and not a problem to force them out.
He put his hand on my head and recited something in his mouth for 30-35 seconds and said that they have gone. Man I kinda laughed inside, NOT BELIEVING, as I was suffering since last month and the last attack was some 4 hours ago with the pain, not to mention the intensity of C H.
I went back same day to my university as I am Dean of faculty of agriculture and was needed at university. The attack came as usual at 5 am but it was not in the brain but the eye boll was about to burst with extreme pain.
Again went to the priest and told him the situation and he said no problem. He put his thumb on my eye and again took some 30-35 seconds and said OK GO (This time I believed him).
I came back to my university and the attack came as usual at 5 am but this time both eye and brain were silent but there was extreme pain on left side of my face.
Again visited the priest and he again did the religious thing and I was out of this CH cycle that was supposed to go till 10-15 of August, just stopped like it never existed.
It's tragic for such a young person to be struck with this vile condition. I'm so pleased you got a fast diagnosis. I had it for 5 years before I was finally diagnosed after having seen about 7 different doctors. As it's a rare condition our family doctors are slow to recognise it and I had to see 3 different specialists (and it takes months to get an appointment here) before I found someone who even understood the intensity of the pain. After all the research I've done my doctor says I know more about it than she does.
I also had a nerve block procedure done twice but it didn't help and I've swallowed every pain killer known to man to no avail. The sumatriptan injections are the only thing that has worked.
I now have a repeat prescription which I can collect when ever I need it, but it takes 4 days for the prescription to be sent to the doctor and back to the pharmacy, and then they don't have stock because it's "not one of their usual drugs". That adds another day. So even with the repeat prescription it can be almost a week with no relief. As I can have 8 - 10 attacks a day life can be pretty miserable as you can imagine. Not just for me but for my family too. My son is 43 years old, and he cried like a baby as he watched me.
Fortunately, my attacks are episodic so I do have several months at a time without an attack. Here is a tip. I continue to collect the sumatriptan for a couple of weeks after an episode has ended, and that way I have some to see me through that first few days. I assume you are in the USA and am not sure how things work over there but perhaps you could do the same to get around the limits imposed by your insurance company.
Please tell your daughter she is in my thoughts and if she wants to rant to someone, I'm here. I can't tell her anything that will help, but sometimes it's helpful to just know that someone understands what you are going through.
Thanks so much for your kind words. Stockpiling is exactly what we're attempting to do. The most difficulty we've experienced is getting the script for Sumavel filled, not only because of the initial limit imposed by the insurance (which was lifted via a request letter from the neuro). Being an unusual case, even though the insurance has finally approved coverage, their online system does not reflect this. The pharmacist has to actually pick up the phone and call the insurance company, then we have to be fortunate as to who answers the call: if we're very lucky, that person will do more than just check their online system!
I don't want to stray too far from the intent of this forum (GPs), but as this is somewhat related as an obstacle to obtaining treatment, I will mention that I have encountered the following: no pharmacist near us stocks it; because it is so expensive, one pharmacist would not even order it unless we paid in advance because she assumed we would/could not pay for it out of pocket; another pharmacist would not make the phone call to verify that the coverage block had been removed (we had to have the insurance co. contact the pharmacist). Our nearest pharmacist charges $100US more than a distant one, so we are now getting it by mail. What we've discovered: you have to become a very persistent, informed, and creative advocate for yourself to transcend providers' lack of experience with this condition.
The Beloved Girl's doctor was very frank: it's the worst kind of headache that can be experienced. BG has opted to "ride it out" a few times, either to avoid medication overuse/rebound headache, or to conserve her jabs (we enjoy the British vernacular very much over here!) for when we're out and about. Each time the whole family was in tears. This being her first cluster, we've no idea what to expect: it's been a month and I'm so worried that hers may prove to be the chronic sort. Having access to the medical data and forums online is a double-edged sword: you get a lot of valuable intel and you learn there's hope for remission, but you also learn not everyone experiences remissions. There appears to be insufficient data on CH to gain a perspective on tendencies among youth to go chronic or episodic; I suspect that has more to do with the difficulties in obtaining an accurate diagnosis that it does with actual occurrence in the population.
Mjc, may I ask how long your clusters last? And have they changed over the years? So sorry the nerve blocks didn't help you, and that you get so many per day. Does oxygen help you at all? For BG, it brings very quick relief, but the relief generally only lasts around two hours: I've read that the O2 sometimes just postpones the headache. I felt bad for her having to always keep the O2 near (complicates going to concerts, the beach, etc.) but she said she'd happily drag an elephant on wheels around to ensure that relief was near. There are smaller portables that can be carried in a backpack, but I'm not sure they contain a sufficient amount to supply the 8-10 liters/minute for 10+ minutes needed to abort an attack.
Back to the focus of the forum: Here in the US, the challenges to getting oxygen are that you apparently need to see a specialist (GPs lack authorization?) to get a script to use oxygen for any purpose other than a respiratory condition; then the prescribing doctor needs to file a daunting amount of paperwork with the supplier; then then insurance needs to approve it, which can be tricky any time you are using it as an "off-label" treament. It took over a week for our delivery to start once they had received the script from the doctor. Had I not been able to "borrow" a few tanks from a relative to get through those days, we would have been in urgent care daily (and paying for an office visit each time) to receive a few cents' worth of oxygen!
Mjc, very sorry you are faced with the issue of the sumatrip injectibles not being recommended for 65+. I assume this also applies to the nasal sprays (i.e., the issue is the med, not the delivery method)? My understanding is that O2 is the best alternative as an abortive, although inconvenient.
Again, we are very grateful for your support and thankful to have found this forum!
My CH's change all the time. Each individuall attack can last anything from 15 - 45 mins. I have between 6 and 10 a day, and each episode can last from 2 - 8 weeks. The longest remission has been 11 months and the shortest 3 months. It usally starts in the night - I have only ever had one that started in the daytime. Apart from the pain, my nose and eye runs, eyelid droops and my top lip goes numb.The first time it happened I thought I had had a stroke. It doesn't seem to have a trigger like some peoples, ie: weather conditions, other illnesses , exercise, alcohol etc., but uncannily IT CAN TELL THE TIME. My attacks come at exactly the same time every day. It occasionally misses one, but sure enough the next one will be on time.
The worst experience was at a weekend. Two am. on a saturday morning it started, and there was no gap between the attacks. I was in constant agony for 16 hours. Being a weekend access to doctor was nil. Just phone calls - but they can't see your suffering over the phone. The system here in the UK is diabolical. My husband removed all the painkillers in the house because I was massively overdosing on everything I could find out of sheer despiration.
In the end my husband took me to hospital and all they said was to increase the dosage. My husband explained that I had already taken huge doses of a dangerous cocktail of drugs. I was BEGGING for help but the doctor just shrugged, said he didn't know anything about headaches and I would have to wait till I could see my GP on monday (but It takes a minimum of 2 weeks to get a GP appointment here). He didn't know what to do, and couldn't get rid of me fast enough. I rushed from the hospital screaming that I would have to kill myself because there was no other way to stop the pain, and at the time, I meant it. I truly believe that if my husband hadn't been around, then I would not be here now. Needless to say he continued to withhold the pain killers (thank god) so I suffered on till about 6pm when it stopped as suddenly as it started.
All this was before it was diagnosed as CH and I didn't know sumatriptan existed. I feel the very name of this condition leads people underestimate it's severity. I've been labelled a hypercondriac, and drama queen. After all it's "Just a headache". And thats the biggest problem, no one understands. I wish all these doctors could experience this pain for just 30 seconds (wouldn't wish more than that on them) and then maybe they would make an effort to help.
I have never been given oxygen but I will ask for it if I can't have the injections when I reach 65. The jabs take the pain away completely in 5 - 7 minutes but it always comes back a few hours later. Only allowed 2 per day but if I'm lucky that will cover me, but not always.
We have a big retirement trip planned soon (part of it in the USA) so I'm stock piling now so that I have plenty to take with me. My last holiday was ruined because of this, as I didn't have the sumatriptan then.
I hope with all my heart that your daughters pains will go away and never come back, but at the very least they will be episodic so that she does get some relief. Tell her I'm thinking of her and wish her well.
Take care of yourself too - she will need you. 023mjc
Agree wholeheartedly on how the nomenclature may contribute to underestimation of the severity.
The beauty of the oxygen is that you can use it frequently without rebound, and there are no nasty side effects, unlike most of the pharmaceutical treatments.
Wanted to add that I've seen references in some CH forums to welder's oxygen. Although some consider it safe, I would strongly urge against trying this, no matter how desperate you are! We have an acquaintance who had a very adverse reaction after doing this--may have been a coincidence, but not worth the risk!
I have just been reading the responses so far and would like to send my good wishes to everyone and thanks for their input. I had to face a 12 hour long haul flight on Thursday but fortunately my cluster subsided 24 hours before take off. The relief was amazing.
I have started to refer to cluster as TNC. My reasoning is also that the word headache tends towards producing a negative reaction and is not a good taxonomy for the condition.
Whenever I say "TNC" the response is always "Oh, what is that?" and that allows me to describe the condition without using the word headache. The result is uniformly more sensitive. TNC stands for trigeminal nerve compression. That, as I understand it, is the mechanism of our pain and therefore appears to me to be a legitimate usage. I find that trigeminal nerve neuralgia, essentially a description of intense pain in the trigeminal nerve, tends to illicit the response, "Oh, something like bad toothache!".
I realise I am playing fast and loose with medical terms here and may not be actually on the button but this is merely a device to get around the problem we all have: desperately trying to convey our condition whilst often in a state of pain not conducive to speech.
What is very, very clear is that the medical profession needs some help (diplomacy here) to understand the condition we suffer. The question is how to create that "help". I do have an idea and will share it with you all in due course once I have formalised it a bit better.
Finally, I believe the following quote to be an obscenity in human morals:
"We requested and received oxygen in the clinic, and this physician re-newed the script for sumatriptan (it turned out that the 6 dose limit is imposed by the insurance company; you can get more if you are able to pay out of pocket). "
Perhaps we should challenge this attitude as well. Whilst it may not appear to be an issue in the UK as much as it is in the US, I believe that it actually does have a role. As GPs control their budgets and have fiscal responsibilities, I believe, as part of their contractual obligations, then it would be a naïveté to believe the wide spread problems of accessing effective but expensive medication has nothing to do with money.
Best of luck to you all. Please keep this thread running and encourage others to put their experiences here.
TNC is good. I will use it from now on. My neuro called it migrainious neuralgia and as you say it sounds like a migraine or a toothache. I have heard lots of people say " I've got a touch of neuralgia" and I think to myself, neuralgia doesn't just touch - it smacks you in the face with an iron bar.
I had a14 hour flight home from Singapore during one of my episodes. I took so many different tablets in large doses that I was virtually unconscious for most of it.
Looking forward to hearing your idea of how to help the medical profession to understand this vile affliction.
My surgery has no walk in appointments at all . You can see a GP by pre booked appointment only, and always a minimum of 2 weeks to wait. Because of this you can NEVER see the same doctor twice. Each doctor wants to try all the drugs all the others have previously prescribed which have not worked, resulting in weeks of pain.
They look and sound offended if you try to suggest that you know what you are talking about and they are wrong. You go home with a useless prescription which isn't worth collecting and a feeling of utter despair. A trip to the doctors is a waste of time for both patient and doctor.
Much the same response from hospital doctors. They say the tablets WILL work if you take them in high doses and for long enough. I have been told to increase the dose (despite the fact that I've already taken far more than is recommended) and give it a few weeks. Great!
After 5 years of pestering GP's, I was eventually referred to a neurologist,( I think it was just to get rid of me to be honest) and finally got a diagnosis and some help. However, try to get the GP to actually prescribe what he suggested, and you're back to square one. "It's too expensive, have some co-codomol instead".
In my experience, a positive response from a GP is almost non existent.
First cluster headache in May 2009, after numerous visits to GP was referred to a neurologist and diagnosed in January 2011; unfortunately I have the chronic type.
Lithium was prescribed as preventative but side effects became so severe that had to stop April 2013. Employment terminated also April 2013.
Zolmitriptan nasal spray became much less effective so requested oxygen and sumatriptan injections (as recommended by BNF) in June 2013 but GP prescribed oral dispersibles to try and referred me back to neurologist (only hospital can arrange for oxygen); appointment not until October.
Had meeting with practice manager to again request injections in July 2013 but was refused due to GP's reluctance to change triptans before neurology appointment.
Currently not on any preventative, struggling with twice daily attacks and inadequate pain relief. Roll on October.
First of all I think you should try to see a different doctor. Thankfully my GP is now working with me ( I think she has done a little research and now has some idea of what CH is all about), and she has changed my meds several times while I have been waiting 11 months for a follow up appointment with my neuro. As for the oxygen I don't have it myself but I know another sufferer who does and I'm pretty sure her GP prescribes it. If you do get it, (THIS IS IMPORTANT) you need a flow rate of 15 - 25 litres per minute an a non-rebreather mask. The wrong flow or the wrong mask and it won't work.
There is a site called clusterheadache.com. Have a look on there and you will find many helpful tips to cope with the pain. In the meantime, try chugging down a red bull, really fast, at the onset of pain. It's something to do with the combination of caffeine and taurine that does the trick. Many people have had great success with it. It doesn't work for every one of course, nothing does, but well worth a try in an emergency. Hope you find some relief soon.
What is very clear from all of this is that GP delivery to our needs is neither uniform nor, in many cases, ethical. So the question is are we prepared to sit back and take it or do we want to change this situation? I believe we can with a concerted effort and a sound strategy.
My first stage is to see who amongst you now want to try and tackle this GP ignorance head on. The approach I am going to suggest is that we do not become confrontational but be positively educational. To be successful, I believe, we have to use psychology and understand the weakness of those with a professional ego.
I will show more of my strategy, and it will be one open to development from a "democratic" community of sufferers, once I know if people are willing to have a go.
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Migraine /cluster headache /red eye
Cluster Headaches...
