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Topic: I believe I am a sufferer. (Read 738 times) |
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paulca
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I believe I am a sufferer.
« on: Jan 10th, 2008, 3:55pm » |
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Hello all,
I'm Paul from Northern Ireland. 33, smoker, drinker, single, work in software.
When I was about 18 I got a bout of headaches. Using over the counter pain relief products like "Paracodol" and "Nurofen+" I was able to get some relief, enough to wait the headache out, but only with a least the maximum dosage or sometimes more. I put them down to: Too much time on the computer and spending too much time with my head leant up against the radiator. They went away.
However the same head aches returned a few years later, but more intense and lasted for over a month. I went to the doctor and he busied me out the door with Migraine preventatives and pain relief prescriptions. So I suffer from Migraines? To be honest I remember saying "No" or "Not really" to most of the questions that I now know are related to migraines. The bout passed so I didn't bother anymore.
Again in my 20s I had several bouts of headaches. I would get the repeat prescription for the migraine stuff and had some limited success with taking 2 of the preventative migraine pills immediately followed by 2 Paracodol (Paracetamol and codeine(sp?)).
It was when I was about 25, following an incident where i recieved the wrong prescription (ibprofen only), and my next headache went untreated that I started to research my symptons myself. By the way, I strongly discourage attempting to sit out one of these beasts without any pain relief! The incident drove me completely insane for 2 hours and at least one cup was smashed and I had a bruise on the side of my head from hitting myself repeatedly, trying to hide the headache with more tangible pain.
They were always on the left side, though I couldn't honestly remember if I'd never had them on the right side. The vien on my temple would rise and pulsate, my eye would stream with tears, my nostril run, my eye go bloodshot and my eyelid drop (these I put down to the rubbing I was doing). I had no visualisations with the pain, lying down didn't help except that the pain was sometimes so great you couldn't do anything but lie down!
I seen cluster headaches in a medical dictionary and thought they very much fitted my symptons, but I refused to go to the doctor and say the dreaded words they must hate, "I read in a medical dictionary...."
I also looked in vein for patterns, triggers, things in my life that had changed or increased/decreased prior to or during episodes. Friends and family suggested the obvious:
1. My use of the PC (sometimes over 12 hours a day). Easily ruled out as I'd had episodes during heavy use and during a period of 3 years when I didn't even own a computer.
2. Smoking. Well if it was due to smoking and I have smoked since I was 18, what about the first episodes? and what about the periods of no headaches while smoke.
3. Drinking. Same answer at to smoking.
4. Loud music/headphones. Same answer as to Drinking and smoking.
At this stage my cycles came at change of season and I thought that might be a pattern. The next episode happened mid winter.
I still today can't find a pattern.
Nerofen+ became the mainstay for relief. 1 taken on the first hint, usually a physical tightening on my left temple, but as this can be very misleading with lots of false positives, you have to wait until it becomes a pronounced feeling, the first time you feel you need to close over your left eyelid against the tension, take a neurofen. As soon as a 'real' headache is known to be occuring, take at least 1 more, 2 if the episode has been severe so far. Wait for them to take effect, usually results in about 30-40mins of increasing pain followed by sudden gaps of relief which quicken to a constant level of relief/reduced pain. If that level of pain is still too much, take another nurofen. Write down or remember when you took each pill. Add 2 hours for paracodol or 2 and a half for nerofen and be prepared to follow then with 2 more pills each period.
Today this is still what I use and it's far from ideal, results in lots of 20-30 minutes periods of agony followed by fuzzy periods stuffed full of pain killers trying to judge when they will wear off.
Nearly 3 years ago I got my eyes tested and found I needed glasses. I had recently had a bad episode of headaches. For nearly 2 years I had no headaches. I thought I'd cracked them, I thought it was just simple eye strain. Seems silly to me now that I thought eye strain could amount to that much pain and complete resilience to pain medication.
Inevitably just after xmas this year I started into an episode. My heart fell, it really did. It got worse, this bout was much more severe than others before it. They are coming more regularly, in a progessing pattern that was recently afternoon, when I was off work for xmas. They have progressed now to night time. They seem stronger, they occur much more often when I'm trying to sleep, they wake me up, prevent me sleeping.
On Tuesday night I got a head ache at 8pm. Dosed in pain killers (4 paracodol) I fell asleep. 10:15 on button I awoke in severe pain, 3 more paracodol half an hours agony and I fell asleep. This continued every 2-3 hours all night until thankfully I awoke with alarm at 7:30 with no headache and a normal day at work, feeling quite well slept after a drozey start.
Last night it didn't come until 12:30 just as I was heading off to sleep. Again every 3 hours I took lots of painkillers and fought my way back to sleep. However this time when 7:30 came there was no way I could go to work. In fact the pain did not subside until 12:00 when I then slept through until 7pm!
This has brought me to now seriously consider getting these damned headaches sorted out. It's the first time I've had to take time off work for them and it's left me all out of sync sleep wise and I'm unlikely to be fit for work as a result tomorrow, also considering I may have another attack tonight.
The only odd thing that bothers me, from all I've read and all I've experienced about this kind of headache is that once or twice, I seriously believe I have 'thought' my way out of an attack, or aborted it. Using simple will power. Usually this is when an attack hints at being imminent when I am in a place where an attack would be very unwelcome, like being on a night out or in a job interview waiting room. Might just be "all in my head" though. If I did do it, I'd like to know how though and I'm sure a lot of you folks would too.
I found the lists of treatments on this site interesting, as I did the Wikipedia page on cluster headaches. I should have searched online before now.
I won't go as far as some with undermarket narcotic style pain meds and injections, physcoactives, anti-physcotics etc. until I have explored the more mainstream methods. The water idea is new to me for example.
Anyway, sorry for long post. Good luck all in fighting these damned things off.
Paul
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Sandy_C
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Re: I believe I am a sufferer.
« Reply #1 on: Jan 10th, 2008, 5:53pm » |
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Paul, I'm so sorry that you are hurting so badly, but if you have CH, you have definitely come to the right place.
Much of what you said sounds like it could be cluster headaches. I am an episodic clusterhead. I will have cycles every 18 to 24 months, each cycle lasting anywhere from 8 to 16 weeks. Then, glorious pain free time.
Read everything you can on this site, and visit the OUCH.COM site (buttons to your left). Many of us have found that 100% oxygen, delivered through a non-rebreather mask at 15 or better has been a great abortive if you use the oxygen at the first sign of a CH hit.
I personally do not take any meds other than oxygen. One thing I can tell you is that over the counter pain relievers, like aspirin, ibuprophren, don't work, and prescription pain killers don't work either.
CH causes the blood vessels to expand drastically beyond their normal - up to 20 times the size. You need to be thinking about vaso-constrictors which reduce the size of the vessels.
Try energy drinks containing caffeine, taurine. Chug them down at the first sign of a hit. Ice packs on your head, neck. Ice water - drink tons and tons.
As said above, read, read, read. There is so much combined knowledge here. Print out things you have learned and take them to your doctor. If your doctor is not very well acquainted with headaches, then find a neurologist, or headache specialist.
We're 24/7. Keep posting, and ask any questions you want. When I first came here I was told the only stupid question was the one I didn't ask, so ask away.
Sandy
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Batch
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Re: I believe I am a sufferer.
« Reply #2 on: Jan 10th, 2008, 7:00pm » |
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Hey Paul,
Believing is good... Knowing is better. Try to get an appointment with a good neurologist specializing in headaches. A good diagnosis is the first step in the right direction.
Cluster headache sufferers are all wired differently... What works for one may or may not work for another. If used properly at a high enough flow rate, oxygen therapy is the exception. If you manage a visit with a neurologist, ask for a prescription for oxygen at 15 liters/minute. It is the least invasive of all the abortives and it's much safer than imitrex/imigran.
If that option is out of reach, buy a gallon of ice cream and take it to the local fire station that has an Emergency Medical Technician (EMT) with oxygen on their rescue vehicle. Tell them you think you have cluster headaches and would like to try oxygen at 15 liters/minute or higher if they have it available. (You may want to check to make sure they have EMTs and O2 first before buying the ice cream.)
Then the next time you feel an attack coming, head for the fire station and get on the oxygen. If you do have cluster headaches, you should be able to abort your attack (make the pain go way) in 20 minutes or less at 15 liters/minute... in less time if they can provide a higher flow rate. There's a very good chance that if you do have cluster headaches, oxygen therapy will work effectively. Take that info to the next appointment with a doctor and give him/her the details.
If the oxygen fails to make the pain go away in 20 minutes...you're only out the cost of the ice cream and you've probably made some good freinds in the process.
Take care,
V/R, Batch
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BarbaraD
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Re: I believe I am a sufferer.
« Reply #3 on: Jan 10th, 2008, 7:24pm » |
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Narcs only mask the pain and can cause the HAs to become worse with rebounds.
Caffeine (Energy drinks with caffeine and taurine), coffee - vaso constrictors work best to relieve the pain of these headaches.
Most prescribed aborts are Imitrex or Cafergot (ergotomine). A good headache doc will KNOW this.
O2 is the first defense (15 liters with a NON REBREATHER mask) -- works for MOST of us.
Remember NOTHING works 100% for 100% of us - each of us react different to differnt triggers. Most can't get near alcohol when in an episode and most of us chronics differ totally on alcohol. Smoking doesn't seem to be a factor for most of us.
Find a doc and get diagnosed. Try the energy drinks at the first sign and ice packs (hot showers work for some). Try Melatonin at night (9-15mg) to stop (or slow down) the night time hits. Give it a few days to get in your system. But beware of over-the-counter stuff (Excedrin can cause rebounds) and the narcs.
Hugs BD
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DennisM1045
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Re: I believe I am a sufferer.
« Reply #4 on: Jan 11th, 2008, 11:19am » |
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Hi Paul,
Welcome to the family! Once you've done some reading here we're all ears. Let us know how we can help.
-Dennis-
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rocketman3104
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Re: I believe I am a sufferer.
« Reply #5 on: Jan 11th, 2008, 12:34pm » |
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Hey Paul, Paul Here!
Welcome to the family. Alot of help and great people here. Try to get the O2.
Your not alone! Alot of us here went years before we found out what it was. Nothing was helping, until my wife found this site and told my doctor about it. Now I've got a good regime that helps me fight the monster. Before I would just bang, rock, rub, fight it with out any help. Deep rapid breaths were the only thing that would help. Not like hyper-ventilating, but fast,deep, rythmic breathing. Big air in/Big air out.
Good luck and hope you have relief.
P/S: They only give that name to the really good ones!
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Paul
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paulca
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Re: I believe I am a sufferer.
« Reply #6 on: Jan 16th, 2008, 7:58am » |
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Well, I was at the doctor this morning. I explained the symptoms and then explained that while they have been previously treated as migraines I had done some research myself and my mother independently, both of us came to the same conclusion: Cluster Headaches.
He was familiar with them but looked it up and read out the symptoms, which matched mine and congratulated me on what seems like a correct diagnosis... though he did discourage self diagnosis without seeking medical advice as well. (In other words don't let it go to my head - bad pun).
He prescribed: Sumatriptan 50mg which from googling seems to be a migraine pain relief drug that has been claimed to work for cluster headache attacks.
He said I should try them for a while and see if they relieve the pain and as I should be nearing the end of this episode they should do this time. If I still have headaches in a few weeks (I only have 6 sumatriptan) to come back and he next attempt will be preventative with Beta-Blockers.
Bad (ish) news is my blood pressure was significantly high and I have to go back headaches or no headaches in 2 weeks to see if it has come back down again.
Good news is that last 2 headaches have been lesser and shorter. In fact the one I had when I woke up this morning was easily killed with 2 paracodol and hasn't returned. Hopefully this means the end of this cycle.
Also my manager in work has told me not to worry about the time off and to take whatever time I need.
Thank you all for listening. From reading around on here I get the feeling I'm one of the lucky ones. This cycle has been my worst ever and at it's peak I was maybe hitting 6/7 on the kip scale. I say lucky as I can usually 'get by' with 2,3 or 4 normal max strength pain killers.
Paul
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| « Last Edit: Jan 16th, 2008, 8:00am by paulca » |
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DennisM1045
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Re: I believe I am a sufferer.
« Reply #7 on: Jan 16th, 2008, 8:59am » |
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Hi Paula,
Congratulations on finding your dx - my condolences on the dx itself. You are definitely in the right place though.
Quote:| (In other words don't let it go to my head - bad pun) |
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That's the spirit 
50mg Sumatriptan tablets aren’t effective for most people. The attacks come on fast and by the time the pills become effective the HA is firmly rooted or on its way out anyway. Sumatriptan injections are much more effective in aborting CH. However this drug is a powerful vasoconstrictor and needs to be used carefully. Overuse can lead to rebound HAs.
Any form of Codeine can bring on a CH is a lot of people. These drugs also cause rebound HAs and can be addictive.
A much better option for many with almost no side effects is Oxygen. You need to have 100% Oxygen delivered at 12-15lpm through a non-rebreather type mask. This is my primary abortive.
High blood pressure during an attack is not unusual. Were you in pain when your BP was taken? Did you have high BP before? If so, a very effective calcium channel blocker called Verapamil is used by a lot of people. It is a blood pressure medication so you could kill two birds with one stone.
It sounds like you and your Dr need to do some reading. Please print, read and bring these two documents to your Dr at your next visit. They should help get you on the right treatment regime.
http://www.plainboard.com/ch/chtherapy.pdf
http://www.efns.org/files/guideline_49.pdf
Please let us know how it goes. I hope you find some PF time soon.
-Dennis-
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Callico
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Re: I believe I am a sufferer.
« Reply #8 on: Jan 16th, 2008, 4:13pm » |
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Hi Paul,
Welcome aboard, but sorry you need to be here.
I am a bit concerned with your usage of the pain killers. Over the counter pain meds will not be effective for CH because thy take to long to get into your system, and with the overdosing you are mentioning you stand a good chance of causing liver and or kidney damage. You say the HAs start to go away in about 20-30 mins, but often that is the length of a CH attack, and it usually takes 30-40 mins for o/c pain meds to work. They may be helping with after attack shadows, but not the CH attack itself.
Keep reading. There is a lot of great info here. O2 works well for most, and I find Red Bull, Monster or one of the others drinks with cafeinne and Taurene works very well for an abort for me if I slam them down instantly at the beginning of an attack.
Jerry
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Stinger
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Re: I believe I am a sufferer.
« Reply #9 on: Jan 22nd, 2008, 1:53pm » |
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Do you slam down a Red Bull at night when you wake up. Does it help then? Does it affect your sleep. I am a coffee drinker, but have to stop at noon because it will affect my sleep.
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kcopelin
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Re: I believe I am a sufferer.
« Reply #10 on: Jan 22nd, 2008, 2:05pm » |
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Welcome home!
Dang sorry you needed to find us but real happy you did. You already know more about cluster headaches than most doctors if you've done your research using the links on this site.
I'll slam a Rip It at 1 a.m. to abort a nightitme hit if I have to...doesn't keep me up any more than the disinclination to go back to bed once hit. I dread the next one. Melatonin has really helped me with night time hits. Has failed a few times, but just give me three nights sleep and I'm good for a couple of weeks.
Good luck for PFDAN,
kathy
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paulca
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Re: I believe I am a sufferer.
« Reply #11 on: Jan 22nd, 2008, 2:37pm » |
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I didn't have a headache on Saturday or Sunday and thought this episode was over. I even tempted them by having a 6 pack on saturday night! Didn't get any sleep on Sunday night, partly due to over sleeping on Sunday, partly back-to-work trepidation. My sleeping patterns are about as regular as a 3 and a half sided coin anyway.
So I went into work with no sleep and managed to make through the day. Shattered I crawled into bed at 7:30pm looking forward to a good long sleep and.. BANG, son-of-a-bitch, 10pm I awake with my little friend bouncing on my eye like it's a space hopper.
No sumatriptan left. It was pain or pain killers, so I opted for the pain killers. The headache wasn't bad and 2 paracodol and 20 minutes and I got back into bed and asleep by 11pm...
Yep, you guessed it, BANG, 1:30am another one, or the same one kindly brought back by the paracodol. Couldn't get back to sleep after that until 6am this morning, just before the alarm, unpopular it was, went off.
Add to that I had a shadow all day and still have one. Most people would call this a headache! Ha! Not even worth wasting an Asprin on!
The sumatriptan work, but take too long to take effect, the good thing is the headache doesn't return when it wears off like normal pain meds.
I'm not sure about this "CH attacks last 30-40mins.", I wish! Mine often last several hours... eye streaming, nose running, pain that makes you swear like a trooper, etc. etc. Granted this time round they have a bad habbit of returning after normal pain meds wear off. They didn't used to do that, nor for that matter did they used to hit me when I was asleep!
I suppose everyone's different, and there is a small change I don't have cluster headaches at all, just something that behaves awfully like them.
The doctor also informed me I have high blood pressure, so I'm thinking this might be the reason this bout of headaches is much worse than before.
So, here's me hoping I get some sleep tonight. My job is very technical and challenging and without a good nights kip I'm always a little dull and not at my best. I'm running out of easy things and can't keep putting off the complicated things for long.
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| « Last Edit: Jan 22nd, 2008, 2:38pm by paulca » |
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Stinger
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Re: I believe I am a sufferer.
« Reply #12 on: Jan 22nd, 2008, 4:20pm » |
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Yes, I thought about it after I asked. I would rather lose sleep than have the headache for sure. Being early in my cycle, I haven't had anything above a KIP 6 so far, but bad enough. I have a shadow as we speak. And I have my Red Bull standing by.
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paulca
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Re: I believe I am a sufferer.
« Reply #13 on: Jan 23rd, 2008, 3:17am » |
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9 hours sleep yah! I feel human! I should get through today feeling like I have a brain and not just a lump of wet sponge in my head.
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Beastfodder
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Re: I believe I am a sufferer.
« Reply #14 on: Jan 23rd, 2008, 7:33am » |
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Paul - first choice abortive is O2 and the NHS does a great job of delivering it to your door.
All your GP needs to do fill out a HOOF form and a supplier such as Air products then delivers to your door. Used with a non-rebreather mask (basically you just breathe O2 and nothing but) its both more effective and has less impact on your body. Often your GP's default setting is to go pharmaceutical and don't realise how effective O2 is.
Oral sumatriptans take too long to get into the system to work as abortives and there's 'melts' for under the tongue, a nasal spray and self administered injections which work to a greater or lesser extent for some. Heard Frovatriptan recommended as an option to get through night's since it hangs around in the system longer.
Too much reliance on OTC pain killers isn't the best, remember overdoing paracetamol in my early CH days. Red Bull often helps too - tho' not that much for the hits in the middle of the night if you're planning to get back to sleep!
All the best - and good luck with the O2
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hotprestwich
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Re: I believe I am a sufferer.
« Reply #15 on: Jan 23rd, 2008, 11:36am » |
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Hey man your story is such a familiar one to mine ,i too used to abuse the pain killers and parecetamol, but you have to belive that the headache will go away in the same amount of time whether you take the meds or not,
when i found this site in 2003 the first thing i did was stop with the pain killers and i found that they went away anyway in 20-30 mins, those over the counter meds are not your freind they can cause rebounds and i personally think that they made my cycles longer,
the next thing is 02 it works, its my new best freind it can help you live sanely, the only things i use that work is coffee, can abort also and combined with 02, you'll hopefully find that you can kick the beasts ass,
feels so good when you cheat the beast,
hope you get some pain free time, and stay away from the pain killers, they dont do you good.
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