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gelica
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hello everyone
« on: Sep 9th, 2004, 8:03am » |
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Hi, I just wanted to introduce myself and say how pleased I am to have found this site. I have not been diagnosed yet, but am currently in my 7th week of absolute agony!! I just know that by discovering CH it is what I have got. Been suffering for about a year and a half now and after the first two times, got told I had severe sinus infections and got prescribed antibiotics which didn't work at all. Every few weeks I wake up to a swollen right eyelid (look right ugly!!) and pain. It has never lasted this long though. Not wanting to bother my doc, been spending small fortunes on sinus things until husband finally could take no more and took me to A&E 2 weeks ago who said to be referred to a neurosurgeon as has symptoms of trigeminal neuralgia. Sorry for such long intro!! Not quite sure what to write - just so glad to find this site - no-one else seems to understand the pain - esp my husband (think he reckons it is an excuse!!). Hope no-one thinks I am time-wasting etc for writing on here when not been diagnosed yet, and am grateful for all the advice and suggestions that I have been reading so far. I am in the armed forces and wondered if there was any other members in the british forces so I could find out how it affects them with work etc. Thank you!!
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| « Last Edit: Sep 9th, 2004, 8:32am by gelica » |
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floridian
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Welcome, Gelica. Hope the new doc works out and you find some relief.
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Redrum
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Re: hello everyone
« Reply #2 on: Sep 9th, 2004, 1:27pm » |
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Bring your husband to the site, we'll slap some sense into him!
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It's hard to be an optimist when the glass is shattered on the floor!
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Ronny
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Re: hello everyone
« Reply #3 on: Sep 9th, 2004, 4:02pm » |
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on Sep 9th, 2004, 1:27pm, Redrum wrote:| Bring your husband to the site, we'll slap some sense into him! |
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Dito
Let him read what it's about, he might begin to understand.
Have you read the links on the left?
Ronny.
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Count your rainbows, not your thunderstorms.
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pubgirl
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Hi Gelica from an old broad in the UK! (non-Forces I'm afraid but ex Police Force)
Can I be nosy? How long do your attacks of pain last. If the A&E person (ER to you Yanks ) said it was TN he must have asked this question.
Wendy
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| « Last Edit: Sep 9th, 2004, 4:58pm by pubgirl » |
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gelica
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Re: hello everyone
« Reply #5 on: Sep 10th, 2004, 10:33am » |
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Hi Wendy, thank you to you and the other kind people who replied to my msg. The amount of time the attacks last vary. Today the pain came on about 10am and I am still in pain although not as severe and it is 15.30 now. Still getting the stabbing every now and again but nowhere as near as bad as earlier. After discovering this site yesterday, tried to work out how often was getting the pain every day and think it is about 3-4 times. Saw great advice about keeping a diary so am doing that from today. Current medication is only co-codamol (useless) and small dose antidepressant (ametrypteline) which i am not taking!!!! Own doc doesn't say what he thinks i got - but am going to go back on Monday coz this is a pure nightmare!!
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pubgirl
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Gelica
5 and a half hour attacks aren't Trigeminal Neuralgia, and a pain lasting that long but overlaid with stabbing pain probably isn't Ch either.
There are quite a few possibilities of what it could be though. I would suggest that you insist on being referred to a neurologist who specialises in headaches as diagnosing headache types is for an expert, not for a GP whose training in the over 600 headache types was probably years ago and probably lasted a day if they were lucky!
I would also meanwhile educate yourself via the OUCH or OUCH UK website about the different symptoms of the different headaches.
I could narrow the options down and post some relevant links if you don't mind me asking a few more questions?
It may also be worth considering asking for indomethacin (a non-steroidal anti-inflammatory drug) as a diagnostic rule out while you await an appointment. I say this as many of the stabbing headache conditions are 100% responsive to it in only a few days and most neuros will prescribe it anyway to help identify what headache type you have. It is also a cheap and relatively safe drug.
Hope this helps
Wendy
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gelica
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Re: hello everyone
« Reply #7 on: Sep 13th, 2004, 6:24am » |
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Hi Wendy,
Thank you for last post. I have checked out the links that were posted to 'thynk' on the various headaches - and am no more wiser than before - one thing for sure its not the sexual benign one!! 
Hopefully I won't have to wait too long for neuro appt. On a good note though, have felt best in ages last 2 days, only getting twinges now and again so after these weeks of pain, it seems that there is light at the end! I have not been lucky enough to have kids yet but I said to husband that when I was getting those stabbing pains the best way to describe them was contractions in my head - I even did the 'breathing' thing!!
I am so grateful for your advice, support etc. I just need to know what's wrong and soon so I don't go through this again and have nothing to help the pain. I haven't been able to go to the gym the whole time I have had this (last thing on my mind!!) infact haven't been able to to much. Even scared when the pain isn't there to run up/down the stairs, run to answer phone etc but am thinking today that a visit to the gym is in order. I just hope that it doesn't start everything off again but life has to go on somehow doesn't it and I can't live in fear!!
I certainly don't mind you asking me a few more questions Wendy, if you are able to narrow the options down and give me pointers to other sites that may help me. You are a GEM!!
Hope that you are good at the minute, and not suffering!!
Geli xxx
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pubgirl
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Hi Gelica
Here goes then......
Could you really explicity describe the pain,when it happens, how long it lasts at what level, how frequently the stabs occur and what the pain is like the rest of the time.
Do you have any periods completely pain free?
What do you do when in pain?
Also, could you describe what if any other symptoms you get with each type of attack.
Have you taken any other drugs beyond the sinus stuff, co-codamol and amitryptilene. If so what effect did they have.
Is there anything that appears to you to set off or worsen the pain
There's probably more but that'll do for starters!
Wendy
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rubberplant
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Re: hello everyone
« Reply #9 on: Sep 13th, 2004, 6:39am » |
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Hi Gelica!
Do you know where your neuro appt will be?
Mine was at kings College Hospital because I was there for my epilepsy. The registrar that diagnosed me was mad but nice. I think they have a dedicated headache team there.
I hope your appt. comes through soon. They'll want an MRI first (mine was done mid cluster and was almost intolerable, but it does start to put your mind at rest!
Good luck and here's hoping your headache goes today, if not tomorrow!
James
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gelica
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Re: hello everyone
« Reply #10 on: Sep 13th, 2004, 11:45am » |
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Hi Wendy, I will try not to write a novel when answering your questions!!
Pain description: The majority of pain is above and to the right of my right eye. I guess its a bit like toothache just in a different place and loads worse! I get a swollen eye (which starts from just under my eyebrow) and makes me look like a freak. The stabbing pains can be anywhere - above or below my eye socket or through my eyeball. Between my eye and ear or at the back of my head near my neck. My right hand side forehead is tender and hurts at the slightest touch, infact the whole right handside of my head hurts to touch but for some strange reason, I tend to press the main point to the right of my eye all the time when its hurting.
The main pain tends to be there pretty much all of the time but with different levels of severity. At its worst and when getting the stabbing pains would say it is 3 or 4 times a day, from 20 mins to 2hrs plus. The rest of the time I know its there but can cope with it.
When I am in the worst pain I am so agitated and restless and grumpy. I feel smothered and want to be left alone. I also feel hot like I have a temperature.
I go weeks pain free. This is the longest time I have had it. It started mid-july with my nostrils leaking water with no reason - wasn't congested or had a cold. Then the eye thing happened and that was it! Each time it does happen tho the doc gives me antibiotics for sinus infections - which I always presumed I had as waited ages each time before even seeing doc. This time didn't bother going to see him until after the A&E thing coz antib's don't work so kept trying loads of sinus medication and steaming but no use. Hospital gave me Co-dydramol and Diclofenac which made me feel really sick. Take the co-cod now but take Anadin Ultra Ibuprofen at same time however it still takes ages for the pain to ease slightly, so nothing has really helped much so far.
Think that white wine possibly triggers it so avoiding it and all alcohol at the moment to see.
Don't think I have any other symptoms. Sometimes it feels like ear-ache but not quite in my ear!! Too busy concentrating on pressing my head I think!!
Thanks Wendy!!
Geli xx
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pubgirl
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Hi gelica
You can ALMOST excuse the trigeminal neuralgia diagnosis as you have what appear to be very strong trigeminal nerve pain.
This doesn't mean you have TN though as the trigeminal nerve is affected in several different primary headache types and TN attacks in discrete bouts lasting seconds which doesn't seem to fit what you are describing, and even more significantly TN is SET OFF by touching the area, not relieved by it.
See below for more detail on the symptoms of TN
http://www.ninds.nih.gov/health_and_medical/disorders/trigemin_doc.htm
Many of your symptoms are similar to cluster headaches, but the continuous pain, overlaid by stabbing pains isn't.
There are several things it could be which I will list but it really is important that you see a good neuro who specialises in Headaches, as yours is definitely not a straightforward diagnosis and you could be suffering from more than one headache type which can confuse the diagnosis even more.
Here's the list:
1 Hemicrania continua (a constant ache, overlaid with stabbing pains) http://www.achenet.org/articles/6.php
2. Chronic daily headache overlaid with Clusters or Paroxysmal Hemicrania or Idiopathic stabbing headache
http://www.mhni.com/faqs_unique.htm#cph
http://www.upstate.edu/neurology/haas/hpstab.htm
3. Medication misuse headache overlaid with one of the headache types above. What this means is that if someone is taking a lot of OTC drugs or painkillers of different kinds, these drugs can actually cause a daily lower level headache. The main way of seeing if this is the case is to be weaned off the painkillers and see of the daily ache goes.
http://jnnp.bmjjournals.com/cgi/content/full/72/suppl_2/ii2?ijkey=a7222a 9463c37104b620f9e4747480fcb97d3026&keytype2=tf_ipsecsha
or
http://www.primarycarenet.org/cme/CME8.CFM
4. Clusters with severe shadows or medication induced pain in between.
Sorry Gelica!
You see why you need a good neuro! There are over 600 different primary headache types, and although it might be easier just to say it is Cluster headache, that may be very wrong.
If you are interested, you could always get your GP to refer you to one of the best headache neuro's in the world at the London Institute of Neurology. Anyone anywhere in the UK can go there as long as you have a referral from your GP. It can't be far from where you live either.
Since several of the headache types above are very treatable by Indomethacin, I still think it is really worth your while trying it while you wait to see a neuro
Wendy
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| « Last Edit: Sep 13th, 2004, 3:14pm by pubgirl » |
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gelica
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Re: hello everyone
« Reply #12 on: Sep 14th, 2004, 4:15am » |
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Hi Wendy!
Thank you so, so much for all your help. I really can't tell you how grateful I am for you taking the time to reply to my posts and for getting me all the great info and for all your fantastic advice too!
There are so many headache types, it's unbelievable!!
Will definitely ask my doc if I can try indomethacin, as it sounds like it is the right medication to stop the stabbing!
THANKYOU !!! (again)
Geli xxx
 Wishing you lots of love and no more pain too! xxx
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