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Topic: Some Cluster Symptoms.. Help Please (Read 562 times) |
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mandajane
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Some Cluster Symptoms.. Help Please
« on: Jun 9th, 2007, 3:50am » |
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Hi,
I have been struggling with this problem for the last 10 years. I found this site last night and am seriously hoping that you guys might be able to help with some suggestions.
At the beginning of all this I was told I was suffering from migraine - the medications they gave had no effect.
Then last year I was told it was Sinusitis and they carried out a FESS procedure - this also has had no effect. They gave me a CT scan before that and couldn't see a problem but went ahead and did the procedure anyway.
I guess the best thing to do is tell you all the symptoms and stuff then let you give me your opinions, so here goes.
I am a nearly 39 year old female. I have suffered from these headaches for more than 10 years.
I say headaches but its not like a regular headache, this is a definite,excruciating pain always in the same place - in the left eye socket. It normally appears after lunchtime. I think only twice it has woken me in the night and it has been gone by morning. My eye gets red and waters, it swells and looks half closed up and my nose that side needs blowing a bit. The left side of my neck gets very tense and tight during these attacks and this time I've had pains in my left ear too which I've never had before. That isn't constant only occasional.
The pain is very intense and when I have it I can not concentrate, think of anything except the pain and have been known to just cry and beg my husband to get me to the hospital because I just can't cope.
The only way I can escape the pain is to go to sleep, I get up in the morning and it will be ok until around lunchtime, then it's back with a vengeance until the next morning.
It goes on like that for 3-4 days, then thats it, until the next time.
I have tried normal pain killers like Paracetamol and Ibuprofen, Syndol, doctors gave me Dihydrocodeine, Co-Codamol. At the time of the migraine diagnosis I tried Migraleve and Immigran - nothing works. 
They took me off the contraceptive pill and gave me a Mirena coil but that again has not helped.
I've also tried decongestant tablets, sprays, steam inhalations and anti-histamines all to no avail.
I can't say how often these attacks come, I've got one now but today will be the 4th day and its never lasted longer than that so I have my fingers firmly crossed that this will be it. The last attack was about 3 weeks ago but before that it has been around every 4-6 weeks, sometimes longer sometimes more often.
I'm desperate now, not all of my symptoms fit the symptoms for clusters but its the closest I've come.
I'd be really grateful for any suggestion, help or advice that anyone can give me.
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mandajane
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Re: Some Cluster Symptoms.. Help Please
« Reply #1 on: Jun 9th, 2007, 4:01am » |
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Just remembered......
I also had beta blockers at one point a few years ago and pizotifen. They also gave me Diclofenac suppositories none of them worked either.
Having tried all these and nothing working, this is obviously not a normal headache surely ?
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Yorky
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Re: Some Cluster Symptoms.. Help Please
« Reply #2 on: Jun 9th, 2007, 4:37am » |
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try the quiz...to the left...
have you tried pure oxygen . (works great for most, at aborting)
i almost forgot......... welcome
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today is a gift.....thats why it is called the
present.
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mandajane
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Re: Some Cluster Symptoms.. Help Please
« Reply #3 on: Jun 9th, 2007, 8:46am » |
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Thanks for the welcome. 
I have done the quiz and I think maybe I'm somewhere in the middle 
Questions 1-8, I answer yes to 3 of them and then in 9-16 I answered yes to 5 of them.
Some of the answers should be a yes, but due to circumstances have to be a no - like the screaming and bashing bit. I have to hold on to that as I couldn't let my 5 year old see that behaviour.
I don't want to tie anyone up on here if there are other people who need your help but although some of my stuff seems to not quite fit, a lot of it does.
As I've been reading out to my husband, other people's stories his mouth has dropped open and he said 'that's you' !!!
I haven't tried anything other than what I wrote in previous posts. i would love the opprtunity to try some other stuff but our doctors here are never happy to hear ideas from the patient.
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lowhydrogen
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Re: Some Cluster Symptoms.. Help Please
« Reply #4 on: Jun 9th, 2007, 10:18am » |
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go to your doctor and demand a referral to a neurologist!
my doc had me down for migraine and it took a trip to London and a letter from the neurologist to change her mind. that way you'll have a definitive answer
since then it hasn't taken a lot to get any medication i want from her
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LeLimey
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Re: Some Cluster Symptoms.. Help Please
« Reply #5 on: Jun 9th, 2007, 10:38am » |
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Maidstone and Ashford huh?! I go down to Margate frequently to see friends (I used to live in T/wells BTW) so maybe we should organise a get together sometime?!
Manda what migraine meds were you given? Have you tried pills only or did you try either nasal sprays or injections? The pills WON'T work for CH as they take too long to kick in but I'll explain more once I've seen your answer.
Have you ever tried Oxygen therapy or any preventatives such as verapamil? I know you mentioned pizotifen but frankly thats about as much use as a chocolate fireguard.
Ordinary painkillers won't help you hon, they don't work on pain in the right way to e effective. In a Ch attack the blood vessels on the affected side of your noggin swell by up to 20 x their normal size and what we need are vaso constirctors to get them back down again.
Home remedies that help are ice packs (frozen peas are my best friend!) or heat helps some people. Caffeine - strong coffee or energy drinks such as red bull can knock a hit out if you take them at the first sign of trouble. Red Bull has taurine in it which is like a turbo boost for the caffeine. It tastes like  but it really does help!
If you want to talk anytime let me know, Ill either IM you my phone number or I can ring you (I have free calls!)
You're not alone with this, I too have kids and I know how hard it is being a mum and dealing with all of this too so don't worry, we'll all help you get sorted I promise.
Low Hydrogen - well thats an interesting handle.. where does that come from?!
Tell us a bit more about you and your CH experiences, it'll be nice to get to know you!
Pain free wishes to you both
Helen
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Bob_Johnson
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Re: Some Cluster Symptoms.. Help Please
« Reply #6 on: Jun 9th, 2007, 10:44am » |
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Click on the OUCH button (left) and make contact with the organization near you.
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Bob Johnson
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UN solved
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Re: Some Cluster Symptoms.. Help Please
« Reply #7 on: Jun 9th, 2007, 11:56am » |
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on Jun 9th, 2007, 3:50am, mandajane wrote:| The only way I can escape the pain is to go to sleep, I get up in the morning and it will be ok until around lunchtime, then it's back with a vengeance until the next morning.. |
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This is not clusters ... better find a good neuro.
Goodluck
UNsolved
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BMoneeTheMoneeMan
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Re: Some Cluster Symptoms.. Help Please
« Reply #8 on: Jun 9th, 2007, 4:22pm » |
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Boy, that is a tough one. You are right, SOME symptoms resemble clusters. Other symptoms and the way you describe it do not sound like clusters.
Make sure you get to a good doc and be sure to specifically list all of you symptoms, along with what you do to cope. Like a lot of headaches, clusters can be difficult to diagnose.
PF wishes to you. I hope you can find a good doc or neuro
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Think of how stupid the average person is, and then realize half the population is stupider than that.
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mandajane
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Re: Some Cluster Symptoms.. Help Please
« Reply #9 on: Jun 12th, 2007, 11:19am » |
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Wow, thanks for the replies
I've not been back for a few days because this attack just knocked me off my feet, it went away on Sunday but came back yesterday - it was there when I got up but got worse during the day, on the right side which very rarely happens.
I went to the gp last night and he has given me
Diclofenac 75mg one twice a day
Amitriptyline 10mg 2 at night.
I have to take them for a week and go back to talk about it.
LeLimey, previously they gave me Migraleve and Migravess Forte. I've also had Dihydrocodeine and 50mg Diclofenac suppositories.
I've never had a nasal spray or injections. Apart from about 8 years ago, i went to the surgery intears with the pain, the gp gave me a jab in the behind and before I'd got halfway home the pain had vanished, I wish I knew what that was.
I took the Diclofenac as soon as I got it but an hour later, the pain was still there. It did seem to ease after the Amitriptyline and its ok at the moment, just feeling tired now, I think that is the medication though.
I'm going to write down all the symptoms for when I go back next week. I forgot to tell him yesterday about the red watery eye that I get with it sometimes.
I don't know if this is Migraine or Cluster. like I said before the symptoms span both conditions I'm just grateful to be able to speak to anyone who knows what it's like to have an intense pain that leaves you feeling desperate and exhausted and affects your life so badly.
People say, it's only a headache but its so much more.
I just know that I can't put up with the worry of when I'll get another one any more - whatever it is.
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