mel b3 Posted August 26, 2011 Author Report Share Posted August 26, 2011 In my opinion the wiki thing describes it truely well, it is an *** to live with, did not know they can come so often, ****** that if they did then I understand the scuicide nick name.............like I said fella the end will come just ride it out. When was the last time you had clusters? the last time i had cluster headaches was six years ago , they stopped just as suddenly as they started and they were only correctly diagnosed towards the end so i never had any real treatment for them . this last lot started around eight weeks ish ago , it was just the 12.30 am one every night at first , i was managing with them ok until the 10.30 am and 12.07 pm ones started (you could set your clock by them) im still getting the 12.30am one but i just get dosed up with pills(if i wake in time)and walk the dog for an hour or two and the excercise seems to help quite a lot, if i dont wake in time and its already taken hold i just hold my head and cry until i black out . the onset of the morning one is a little more variable now and seems to melt into the lunchtime one , i caught it in time today though and took my meds and walked up and down stairs until they started to work. to be honest , today is the best day ive had for a few weeks , im just shattered now , ive taken to staying up half of the night and laying in bed half of the day watching jeremy kyle , i look like a tramp because my face is too painfull to shave and i cant clip my hair because my head is too painfull , the grey hairs are really showing through now as well. i looked in the bathroom mirror this morning and my dad was looking back at me lol Quote Link to comment Share on other sites More sharing options...
Traztaz Posted August 26, 2011 Report Share Posted August 26, 2011 Crappo I forgot thet, the hair that hurts........ I know where you are comminmg from, it will end just ride the lightning! Quote Link to comment Share on other sites More sharing options...
mauser2002 Posted August 26, 2011 Report Share Posted August 26, 2011 Hi Mel b, Know exactly how you feel have suffered from cluster headaches, migrains for the past 20yrs. Have had all the tests available and have been prescribed nealy all the medication available. The best chemical medication at present which is currently working for myself is Sumatriptan Succinate 100mg I get this on prescription, this will usually get rid of the migrain within 20-30 mins. If this does not work then unfortunately I have to resort to a heavy dose of Diazepam which although clears the migrain is not ideal due to the side effects. The best natural medication I take at present which seems to have drastically reduced my migrains is a herb called Feverfew you will need to take this every day in the standadized version 3 tabs daily with or after food 200mg. I was very sceptical in the first place but desparation made me try anything including this herb. I now only get usually 2 migrains a week instead of constant migrains every day sometimes lasting 2-3 months at a time. This herb has been a life saver for me and I now take this daily instead of regular prescription medication everyday. However you should still go and see a Dr or other proffesional and get your head checked out and seek their advice as constant headaches usually mean there is some other back ground problem. Hope this helps Mauser2002 Quote Link to comment Share on other sites More sharing options...
mel b3 Posted August 26, 2011 Author Report Share Posted August 26, 2011 Hi Mel b, Know exactly how you feel have suffered from cluster headaches, migrains for the past 20yrs. Have had all the tests available and have been prescribed nealy all the medication available. The best chemical medication at present which is currently working for myself is Sumatriptan Succinate 100mg I get this on prescription, this will usually get rid of the migrain within 20-30 mins. If this does not work then unfortunately I have to resort to a heavy dose of Diazepam which although clears the migrain is not ideal due to the side effects. The best natural medication I take at present which seems to have drastically reduced my migrains is a herb called Feverfew you will need to take this every day in the standadized version 3 tabs daily with or after food 200mg. I was very sceptical in the first place but desparation made me try anything including this herb. I now only get usually 2 migrains a week instead of constant migrains every day sometimes lasting 2-3 months at a time. This herb has been a life saver for me and I now take this daily instead of regular prescription medication everyday. However you should still go and see a Dr or other proffesional and get your head checked out and seek their advice as constant headaches usually mean there is some other back ground problem. Hope this helps Mauser2002 thanks for the info mate , clusters are a bit different to migrane but any info i can get is positive and helpfull Quote Link to comment Share on other sites More sharing options...
jabtas Posted October 2, 2011 Report Share Posted October 2, 2011 Hi, some of you may know me from the AAOC, a member over there sent me a link to this thread as a fellow suffer of this terrible affliction I get severe bouts lasting for about 6 weeks, every 15 months or so and have done for at least 10 years, I'm currently right in the middle of a bout and am experiencing a sever attack at a rate of 2-3 every 24 hours The last bout I had was Easter 2010, and was so severe I ended up in hospital for a few days after passing out with the pain several times, the upshot of this is that I was finally referred to a nuero specialist at the local hospital, after years of trying to explain Cluster Headaches to the doctors and just being confronted with a blank look I finally found somebody that listened to me I've had full banks of tests, CT scans, MRI etc etc and all appears to be normal The best treatment I have found is Sumatriptan (over the counter name in the UK is Imigran), this comes in three forms and all works extremely well for me but they do take differing times to kick in depending on how they are administered Imigran Tablets - take around 45-60mins to kick in, great for daytime when you can feel the attack building Imigran Nasal Sprays - takes about 20-30mins to kick in, but taste absolutely vile (I tend to shy away from this for that very reason) Imigran Self Injections - literally a wonder drug, kick in in 5-10 mins and stop the attack dead in its tracks I strongly suggest you request the self injectors from your doctor, but be warned that many doctors wont prescribe them as they are quite expensive Don't take no for an answer, keep pushing and if needed go to the practice manager, even ask for a referral to a specialist and then get them to prescribe the injectors Quote Link to comment Share on other sites More sharing options...
Zapp Posted October 2, 2011 Report Share Posted October 2, 2011 I'm adding this to my list of things I have never heard of, but thank god that I haven't. Quote Link to comment Share on other sites More sharing options...
mel b3 Posted October 2, 2011 Author Report Share Posted October 2, 2011 ive been meaning to update this thread for the last three weeks but ive been rather busy getting rid of my insane cheating liar of an ex girlfriend . after another round of a and e visits and sympathetic smiles from my several gp s , an a and e doctor informed my doctor that i needed to be refered to a neurologist , despite my doctors best efforts to ignore this recomendation and carry on treating me for , migrane , hypertension , and all manner of imaginary things , i eventually forced my gp to refer me . after several more bad attacks , i tried to chase my appointment , miraculously i got through to a specialist nurse (the assistant to the neurologist) , this was at 4pm on friday , she said "ill call you right back" i thought id hear nothing for weeks or months , within five minutes she was back on the phone and said "be here at 8.30am on monday because you cant live with clusters " . the specialist nurse was simply amazing , i want to marry her and have her babies !. we talked , i got examined , (a very pleasurable experience as shes stunning), she skirted around the normal medical protocol of letter writing and appointments and did it all by phone and fax and sent the paper trail later . within three days i had two large high flow oxygen bottles at home and ten self injections(imigran 6mg/0,5 ml) and a couple of nasal sprays , (i must say that its totally amazing just how quickly one motivated nurse can make the nhs move along)she really was awesome ,i was so relieved i almost cried , when i thanked her she said "well you cant hang about with clusters , they dont call them suicide headaches for nothing !" , she also said that the average gp will only see one case of clusters in his working life and he wont have the foggiest idea what it is , and , the average cluster sufferer will suffer for four years before getting refered to her for a correct diagnosis. when recomending the fast acting injections she said " do you think that you could inject yourself ?" , my reply was " firk me , when im having an attack i could cut my own head of with a hacksaw ! " and i meant it . she explained the side effects of the injections so the heart attack symptoms were scary but expected lol . the oxygen can work very well if i catch an attack in time and ive only had to self inject once and the cluster stopped within minutes , its quite simply amazing . im in for an mri scan on the 17th of this month , ive been left with constant but tolerable pain behind my left eye (fingers crossed that its nothing too nasty ). i first suffered clusters six years ago when my lovely late wife was suffering quite badly with breast cancer , i feel that for me an episode can be triggered by stress , my latest episode started when i could take no more grief from my insane girlfriend , it may just be a coincidence , but , i havent had a cluster since the day that i threw the old scrubber out by the scruff of the neck . the specialist nurse said that clusters are very rare and that i may get called in from time to time to study me , she also gave me her own phone number and said " youre on my books now and from now on you can call me directly if you have any problems " , she also said " ill send you youre appointments , keep them !, if you ever stand me up on an appointment ill dump you and youll have to wait in the 14 week que with everyone else !" ,. my episode appears to have ended now , she told me of one fella that has a two month episode every seven years . thankyou for your input fellas , the advice was extremelly usefull . Quote Link to comment Share on other sites More sharing options...
Dr W Posted October 3, 2011 Report Share Posted October 3, 2011 Christ just read through this thread, you and any other suffers have my sympathy, I have the occassional migraine and if they are a walk in the park in comparison I certainly never want one. Glad to see you're feeling better, interesting about the stress cause at least you have some peace and quiet now. When you're feeling better you can tell us all about the insane girlfriend, I love those PW posts. Quote Link to comment Share on other sites More sharing options...
mel b3 Posted October 3, 2011 Author Report Share Posted October 3, 2011 Christ just read through this thread, you and any other suffers have my sympathy, I have the occassional migraine and if they are a walk in the park in comparison I certainly never want one. Glad to see you're feeling better, interesting about the stress cause at least you have some peace and quiet now. When you're feeling better you can tell us all about the insane girlfriend, I love those PW posts. my god , to tell you about the insane girlfriend would take years , she is the most phsycologically damaged individual that i have ever met , i loved her to bits but she was killing me inch by inch , she had an atrocious upbringing with a drunken irish alcoholic father and a mentally ill mother , i fell for her straight away but as the stories of the affairs (14 of them) and the marriages that shed wrecked (3 of them) and all the other craziness like painkiller and alcohol addiction , eating disorder , cleptomania , munchausens syndrome , came out i got to hate her in the end , her jealousy would cause her to pretend to hurt herself to get attention and or start fights with the kids , ill tell you the jaffa cake story one day , youll wee your pants laughing . just in case mungler is reading , yes i have pics but only naked ones . Quote Link to comment Share on other sites More sharing options...
Dave-G Posted October 3, 2011 Report Share Posted October 3, 2011 my god , to tell you about the insane girlfriend would take years , she is the most phsycologically damaged individual that i have ever met , i loved her to bits but she was killing me inch by inch , she had an atrocious upbringing with a drunken irish alcoholic father and a mentally ill mother , i fell for her straight away but as the stories of the affairs (14 of them) and the marriages that shed wrecked (3 of them) and all the other craziness like painkiller and alcohol addiction , eating disorder , cleptomania , munchausens syndrome , came out i got to hate her in the end , her jealousy would cause her to pretend to hurt herself to get attention and or start fights with the kids , ill tell you the jaffa cake story one day , youll wee your pants laughing . just in case mungler is reading , yes i have pics but only naked ones . Those 'heads sound absolutely awful - I too looked at the wiki page and am so glad you have hopefully come through the last bout. I think you ought to put some photo's up of the other nightmare to see what some people can do with photoshop etc - I'm no good with it personally but some people can do magic with it. Quote Link to comment Share on other sites More sharing options...
DSPUK Posted October 4, 2011 Report Share Posted October 4, 2011 Mel Glad you feel better - No joke - I had bad headaches -then I had to go to bed with hot flannels on my forehead and in the end it was down to job stress in the fact I hated it - got transfered to another part of company and it was like being reborn. never had a headache so bad again - I hope this ex girlfriend was cause. A mate who is in constant pain from back problems said Doctors will never understand pain untill they experience it and sooner someone comes up with a machine they can plug you and Doc into so he can feel your pain the sooner we might get right treatment. Good luck I hope you don't get any more. Dave Quote Link to comment Share on other sites More sharing options...
mel b3 Posted October 4, 2011 Author Report Share Posted October 4, 2011 its a funny thing , most people get stressed at work but with me its different , i know my job inside out so i never find it stressfull , whatever comes my way i can deal with it easily. my home life is a little different , since my wife passed away i look after my 2 teenagers , i love them as much as any parent loves a child but one day i may throttle them lol. my lad is a typical 15 yr old but my 17yr old daughter is a godsend , i really dont know how id have coped without her over this last few months . my ex girlfriend was a total nightmare , she was damaged goods to be honest and required the level of 24 hr attention that you would give to a four year old child , i think that eventually , the constant pressure of looking after her triggered the episode of clusters that lasted for about three months in total , shes gone now and although i really miss her , my life is so much easier , she was , a liar , a cheat , a thief , jealous , and the most angry , manipulative and spitefull person that i have ever known , i was constantly waiting for the next row or the next lie , she was slowly killing me , shes some other blokes problem now and i feel genuinely sorry for him. i was taking part in some kind of management training a few years ago , part of the training was stress management , the instructor/ tutor made it quite clear that stress will kill you faster than a car crash , i can only agree . Quote Link to comment Share on other sites More sharing options...
DSPUK Posted October 4, 2011 Report Share Posted October 4, 2011 Sounds like my sister in law - she has ruined 7 blokes so far. - drove her father to an early grave and mother in law just gave up and died when SIL moved back in with her. Dave Quote Link to comment Share on other sites More sharing options...
Fisherman Mike Posted October 4, 2011 Report Share Posted October 4, 2011 I havent read the whole thread through but have you seen an Optician of late...? Quote Link to comment Share on other sites More sharing options...
mel b3 Posted October 4, 2011 Author Report Share Posted October 4, 2011 some people just go through life leaving a trail of destruction , she wrecked her own marriage plus three others , her ex husband attempted suicide three times and she left him peniless and homeless , she also left her last bloke peniless and homeless and i was daft enough to pay two months rent and give him food money as i felt sorry for him , i tolerated the insane scrubber as long as i could because i thought that given love and understanding she would get better , i was wrong , it just made her worse , i got rid of her in the end , i made it quite clear that i would not be another one of her victims , when i first met her i thought she was an angel , i almost had a heart attack when i found out that she lived with someone , i dumped her on the spot , she eventually tricked me into letting her move into my house , a mistake that cost me months of tears and around £40,000 , shes just a bad memory now thank god . ps , i should add , mental illness is rife in her family and she really took a beating in her early life , its turned her into a monster and abuser , its a damned shame really . Quote Link to comment Share on other sites More sharing options...
mel b3 Posted October 4, 2011 Author Report Share Posted October 4, 2011 I havent read the whole thread through but have you seen an Optician of late...? yes mike , i had all the angles covered and had some new glasses about a months ago . Quote Link to comment Share on other sites More sharing options...
Gnome of the Woods Posted October 4, 2011 Report Share Posted October 4, 2011 A friend of mine has almost the same issues, he has just been given Sumatriptan in an epipen form that he self injects. Where as the tablets and spay could take hours, he is now pain free in about 5 mins. He is over the moon with the results, although it does make him knackered its well worth it, especially if he wakes up in the middle of an episode. Paul Quote Link to comment Share on other sites More sharing options...
jabtas Posted October 5, 2011 Report Share Posted October 5, 2011 Gnome, look up a few posts Glad to hear you're still calling me a friend Quote Link to comment Share on other sites More sharing options...
Gnome of the Woods Posted October 5, 2011 Report Share Posted October 5, 2011 It's tiny Tim himself! Thought you were to busy to join! lol Quote Link to comment Share on other sites More sharing options...
jabtas Posted October 5, 2011 Report Share Posted October 5, 2011 I am, but really wanted to pass on my treatment and the relief it offers Quote Link to comment Share on other sites More sharing options...
paul65 Posted October 5, 2011 Report Share Posted October 5, 2011 I was diagnosed with cluster headaches about 4 years ago. They aren't a variety of migraine. They will wake you from sleep so you get no relief at night or in the dark. One evening I got home about 6.30 and shortly afterwards an agonising headache came on. It felt like a red hot poker was being jammed through the side of my head and out of my eye. It lasted for three hours, in which time I lay doubled up wishing I was dead. The next night, the same thing. The night after, the same thing again except I went to bed exhausted and woke up at 11.30PM with another one. Four hours of it. It makes you want to smash your head against the wall. So, I went to the quack first thing next day and by chance she had a particular interest in headaches and diagnosed cluster headaches, symptoms being agonising headaches that make you want to smash your head, coming on at the same times every day, tingly wet feeling in one nostril. She reckoned that one eye should be a bit closed too but I have no sight in my right eye anyway so she couldn't really tell. She put me on one of the triptin drugs. I got home from there a bit after 9AM and another headache came on straight away. So I was up to three headaches a day, lasting around 3-4 hours each. Not a bundle of laughs but some people get 6 or 7 a day forever. Suicide headaches they call them. The prescribed drugs didn't touch them, painkillers didn't either. I read that it was a problem in the brain whereby the pain detector is turned up to full with no external cause. So basically your brain tells you are in as much pain as you can possibly be in. But I found that extreme vigorous exercise would ease one if I felt the 'shadow' of the headache coming on. So, I'd do 20 minutes of Wii boxing like a maniac at midnight or go for a run round the block pushing myself to the limit. I would get a headache at work in the morning and duck out for a mad run across the park and back. This would lessen the degree and duration of the headache. Also, necking 2 cans of ice cold Red Bull could fend it off sometimes. Conversely even a half of beer would bring on an extra one. After 3 weeks of this and trying different medications I ended up on Verapamil. It took a week or so to start having an effect But gradually over a month the frequency decreased. I know it was the Verapamil because when I stopped taking it too early, the headaches stared coming back. So all in all it was over 2 months of daily agony. I realised that I'd had a short series of similar headaches over a week or so a few years before that I'd put down to a cricked neck but I think it wasa lesser version of the same. I'm dreading that I'm due for another bout sometime soon. Quote Link to comment Share on other sites More sharing options...
mel b3 Posted October 5, 2011 Author Report Share Posted October 5, 2011 I was diagnosed with cluster headaches about 4 years ago. They aren't a variety of migraine. They will wake you from sleep so you get no relief at night or in the dark. One evening I got home about 6.30 and shortly afterwards an agonising headache came on. It felt like a red hot poker was being jammed through the side of my head and out of my eye. It lasted for three hours, in which time I lay doubled up wishing I was dead. The next night, the same thing. The night after, the same thing again except I went to bed exhausted and woke up at 11.30PM with another one. Four hours of it. It makes you want to smash your head against the wall. So, I went to the quack first thing next day and by chance she had a particular interest in headaches and diagnosed cluster headaches, symptoms being agonising headaches that make you want to smash your head, coming on at the same times every day, tingly wet feeling in one nostril. She reckoned that one eye should be a bit closed too but I have no sight in my right eye anyway so she couldn't really tell. She put me on one of the triptin drugs. I got home from there a bit after 9AM and another headache came on straight away. So I was up to three headaches a day, lasting around 3-4 hours each. Not a bundle of laughs but some people get 6 or 7 a day forever. Suicide headaches they call them. The prescribed drugs didn't touch them, painkillers didn't either. I read that it was a problem in the brain whereby the pain detector is turned up to full with no external cause. So basically your brain tells you are in as much pain as you can possibly be in. But I found that extreme vigorous exercise would ease one if I felt the 'shadow' of the headache coming on. So, I'd do 20 minutes of Wii boxing like a maniac at midnight or go for a run round the block pushing myself to the limit. I would get a headache at work in the morning and duck out for a mad run across the park and back. This would lessen the degree and duration of the headache. Also, necking 2 cans of ice cold Red Bull could fend it off sometimes. Conversely even a half of beer would bring on an extra one. After 3 weeks of this and trying different medications I ended up on Verapamil. It took a week or so to start having an effect But gradually over a month the frequency decreased. I know it was the Verapamil because when I stopped taking it too early, the headaches stared coming back. So all in all it was over 2 months of daily agony. I realised that I'd had a short series of similar headaches over a week or so a few years before that I'd put down to a cricked neck but I think it wasa lesser version of the same. I'm dreading that I'm due for another bout sometime soon. get to the docs and get the injections when it does come back , theyre lifesavers , it totally controlled my life for a short while , i was even scared to leave the house or cook a meal in case i triggered the next one , they can be controlled quite well with the correct meds though. Quote Link to comment Share on other sites More sharing options...
mel b3 Posted March 3, 2013 Author Report Share Posted March 3, 2013 just a quick update hiya all , id forgotten about this thread until i saw a post by another sufferer . thankyou to everyone that offered help and advice , i was in agony during the last episode of cluster headaches and the information and advise that i got from you fellas gave me something to take to my doctors and keep pushing until i got the correct treatment. looking back over the years ive been suffering with episodes of cluster headaches for most of my life , they were very short and intense episodes and i would just put them down to having too much to drink or having bad reactions to certain types of food or even stress . ive been cluster free for a while now and hopefully ive seen the back of them , at least if i do have another episode i have the meds to control the pain and a direct link to the medical experts (they keep you on the books and dont discharge you) , i get called in now and again and they do a bit of research and coincidentally im in for a check up next week . ive also had time to think back over some of the triggers of the cluster headaches , alcohol is a biggie but not a problem for me as i rarely drink these days anyway but they were a trigger for me in my younger days , eye strain can also trigger an attack and as a hgv driver that certainly didnt help , but , the biggest trigger in my case was my ex gf , her scent would quite often trigger an attack , i dont mean her perfume or that she was smelly lol , i think it was some kind of stress response to being near to her that would quite often trigger a cluster headache , smells are a very strong trigger but it tends to be strong smells (eg petrol) and not a person ?. hopefully im just out of the age zone for clusters now , or will be in a couple of years when im due another episode. cluster headaches are quite simply horrific and despite the fact that you know that the pain wont kill you , each attack feels like it will kill you ! , they disrupt your life and the life of everyone around you , the daft thing is that with the correct diagnosis they can be controlled quite well , theyre just so rare that they dont get very well researched and most doctors will never even have heard of them. finally , my last episode left me with a constant pain behind my left eye , it feels like a mix of migrane and toothache , it gets worse when im very cold or very hot and can sometimes make my eye close but most of the time i can cope with it ok . thankyou again for the help and advice fellas , you really were a massive help. mel Quote Link to comment Share on other sites More sharing options...
kyska Posted March 3, 2013 Report Share Posted March 3, 2013 Excellent news for you, I did a bit of reading on trigeminal pain, although I'm not particulary experienced in pain management there are some really interesting readings. Some of the pentin type analgesics by proxy, such as gabapentin, although without good offical results seem to be looking good for this, coupled with other anti eplieptic drugs like clonazepam. Have these been discussed? gabapentin is itself a anti-epileptic, but is used with pain such as brain tumours and other neuralgic based pain. As I said, this isn't my field, and I hope everything stays moderately pain free for you. Quote Link to comment Share on other sites More sharing options...
ME Posted March 3, 2013 Report Share Posted March 3, 2013 I'd never even heard of this until now. That sounds truly, truly horrible. I cant help, but you have my sympathy. You should have, there are two threads going at the same time on the same subject Quote Link to comment Share on other sites More sharing options...
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