Cluster Headaches/Migraines

[NurulKhan]

I wake up with a sharp pain behind my left eye (sometimes to the right)  everyday and treat it with Mexalt. I have tried Imitrex but that doesnt help much. I have been living with these kind of pain for over 6 years but the sharp pain behind the eye for the last 2 years. Is there any other med which is recommended? what can i do to get this pain to go away?
i would like any imput
thanks

[NurulKhan]

Thank you all for all your imputs. I will read up on the information you have provided and make an appointment with my neurologist. I have been seeing a neurologist for several years and gotten a CT scan and retina scan done. No irregularities were found.
Thank you

[mcamp]

hi,
I can truly feel your pain.. I have suffered with a variant migraine/cluster headache syndrome for over 40 years. it is truly a sinister thing to be burdened with as you are privy to the pain and dibilitating effects of of both of these headache conditions. you get symptoms of both kinds of headaches, a stuffy runny nose on the same side where the ice pick is stabbed behind your eye, usually but not always and aura, sensitive to light and or sound, can sit still wanting to beat your head against a wall to stop the damn pain. I tried every preventive they have and never found anything that helped me, i still go to my neuro every 3 months to see if something new is out and if so I give it a try hoping to find a preventive. till then, I take and abortive Dilaudid. It does not stop all the pain but it dulls it a little, takes some of the edge off, removes some of the stabbing pain and makes it a little bearable. I heard pure or nearly pure oxygen worked for some people (i can't afford it) I would like to try it though, next time I run out of pain killers and go to the ER I'm going to ask for oxygen and see if it works. I do hope you try some of the abortives, there are some really good ones out there that work for a lot of people so get a good neurologist and get a good diagnosis first! then go from there. I do wish you all the best and hope you find peace and health...

Mike

[Steph45]

http://www.ouch-us.org/index.shtml

http://www.youtube.com/watch?v=YFKMB8LNeMc&feature=related

http://www.youtube.com/watch?v=7PZ4WsG8Yms&feature=related

http://www.clusterheadaches.com/

http://www.new-you.tv/portal/web/new-you/suicide_headache

http://www.youtube.com/watch?v=vqXQ_coJy4I&feature=related

http://www.planetherbs.com/index.php?option=com_myblog&show=Kudzu-found-effective-for-relief-of-cluster-headaches.html&Itemid=141

http://www.clusterheadache.org/viewtopic.php?f=10&t=259


http://www.miqel.com/clusterheadaches/clusterheadaches.html#cluster-headache-symptoms


http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=prodshow&ref=o2ptimask&sid=411akbqdjmtbr89r409nt785bb0q44ui

http://www.mhni.com/clusterheadaches.aspx

http://www.ouch-us.org/chgeneral/nonmed.htm




Professor of Clinical Neurology at University College, London, and he heads up the Headache Group at London's Institute of Neurology - go here and click on "Listen again"You'll need to go straight to around 20 minutes to bypass the migraineurs
http://www.bbc.co.uk/radio4/science/checkup_20040304.shtml

Bob Wold is founder and President of Clusterbusters, Inc., a 501c3 non-profit charitable organization dedicated to the research of cluster headache and to support people with cluster headache and their families. Based in greater Chicago with his wife and 4 children, Mr. Wold has talked to 1000s of cluster sufferers. In fact, over 25 years of his adult life was burdened with severe cluster headache that was resistant to all standard treatments. That all changed after he tried psilocybin, which has helped regain control over this illness for him…

http://vimeo.com/10918637

http://www.respiratoryreviews.com/sep00/rr_sep00_clusterheadaches.html

[Steph45]

Below is listed SOME of the medications being used to treat CH - in that list are meds that are prescribed for heart decease, epilepsy, anti-psychotics drugs, steroids.....

Imigran injections
Rizatriptan
Zolmitriptan
Sumatriptan Injectable form
Lidocaine
Verapami
Methysergide
Lithium
Prednisolone
Cafergot
Ergotamine
Anticonvulsant Topiramate
Amitriptyline (europathic pain alleviating agent)

Below is listed a list of alternative treatments/supplements now being looked into for CH with varying success rates.....just the same has above, there is NO CURE - no guarantee but may help some but not others


Pure oxygen - 15-25 LPM flow rate with a non-re-breathing mask
Melatonin
Magnesium supplements
Kudzu root
Taurine & caffeine
Vigorous exercise has been shown in some cases to be very effective in relieving and aborting an acute attack by increasing the levels of oxygen within the body.
Drinking large amounts of water in the early stages of an attack
White Flower analgesic balm


Everybody is different, there is no right or wrong way for us that suffer with CH....only ourselves can find out what works best for us.

Unfortunately, due to the rarity of this disease, you may find yourself teaching whatever doctor you have about the disease. Many sufferers have had to go through several doctors and neurologists to find one that is knowledgeable and that will work with them in their treatment.

Knowledge is power and you are your own best advocate in your medical treatment. READ, READ, READ all you can and then go read some more!!!!!

[Steph45]

Cluster Headache (CH) is a "headache" only in that the pain occurs in the head. Beyond that, there are no real similarities.

Cluster headache is a rare neurological disease. The cause is unknown, but it is related to the hypothalamus in the brain. Most doctors do not know much about them which is why many sufferers are misdiagnosed for many years

The degree of pain involved in cluster headaches is markedly greater than in other headache conditions, including severe migraines. Dr. Peter Goadsby, Professor of Clinical Neurology at University College London, a leading researcher on the condition has commented, “Cluster headache causes excruciatingly severe nerve pain probably the worst pain that humans experience."

We're not talking about commonplace stress headaches, or the spinal headaches some people get as a result of spinal anesthesia, or even severe, chronic migraines. These “worst of the worst” headaches are called cluster headaches.

The pain is lancinating or boring in quality, and is located behind the eye (periorbital) & in the temple, radiating to the neck & shoulder. Analogies frequently used to describe the pain are a red-hot poker inserted into the eye, or a spike penetrating from the top of the head, behind one eye, radiating down to the neck,more painful than broken bones, burns, or intense back pain from childbirth or having a amputation without any anaesthetic. The condition was originally named Horton's Neuralgia after Dr. B.T Horton, who postulated the first theory as to their pathogenesis.

His original paper describes the severity of the headaches as being able to take normal men and force them to suicide. Indeed, cluster headaches are also known by the nickname "suicide headaches" because they have driven many people to suicide"

Imigran injections are the only licenced drug for CH.

Cluster headache do not respond to standard analgesics - Anecdotal evidence indicates that cluster headaches can be so excruciating that even morphine does little to ease the pain. Sumatriptan given by subcutaneous injection is the drug of choice for the treatment of cluster headache. Alternatively, 100% oxygen at a rate of 15-25 litres/minute is useful in aborting an attack in some patients.

Cluster headaches are classified as vascular. The intense nerve pain is caused by massive dilation of blood vessels which creates pressure on the trigeminal nerve & pressing on all the nerves surrounding While this process is the immediate cause of the pain, the etiology (underlying cause or causes) is not fully understood.

There is currently no cure for CH and treatment is hit and miss at best. What works for one sufferer may or may not work for another. Treatments that worked last cycle may not work during the next. Treatments that have not worked in the past, may work during future cycles.

[Steph45]

Hi - i have had cluster headaches since the age of 15yrs. I could give you lots of advice but one thing i have learnt over the many, many years of living with the excruciating painful condition is that it differs slightly from one person to another and the cluster Headache cycle changes - what may work one cycle may not the next.

Can i ask have you been to see a Neurologist who SPECIALISES in CLUSTER HEADACHES???  

VERY IMPORTANT to get the correct diagnosis as i know only too well about being "misdiagnosed"

Until Dec 2007 i was seasonal - having 2/3 cycles a year - each cycle lasting 8 - 10wks increasing in intensity until at the height of a cycle i would be having Kip 10 attacks nightly  then as suddenly as they began the pain would end. i would have weeks of being totally pain free before the next cycle began.

Then in January 2009 i became chronic - meaning I would have 3 or 4 pain free days before another cycle would begin. So began 2yrs of unspeakable pain.....in that time i learned more about CH than i had done in the whole of my life. I suppose because i was desperate for help - for answers....

I ALSO learned that there is ALOT of INCORRECT information from so called "experts"
But believe when i tell you that many, many ARE NOT!!!

I am 45 years of age
I am female
I have never smoked
I drink alcohol occasionally
I keep myself fit (run/weight train/shotokan/meditate) am now learning Qi-gong
I have rest pulse rate of 58
I have low chol level and excellent b/p

SOoooooooo regarding CH being MALE/OVER WEIGHT/HEAVY SMOKER/DRINKER ......WHAT A LOAD OF ........!!!!

I am now back to seasonal (thank you god) and i try to help/advice/give info...point others in the right direction  to help themselves - increase knowledge and awareness about CH

For my CH i now take:

O2 100% oxygen - 15LPM - used with a non-rebreather mask (NOT nhs non rebreather mask - total rubbish)    

Kudz (daily when in cycle)

Magnesium (daily - all the time)

Taurine drinks ( take when have  a attack coming on - works sometimes)

Melatonin 12mg - taken 20mins before i go to bed

Imigran injections (when all else fails i take the injection/using the extended method)

Unfortunately there are many times when nothing helps at all......them times i will say nothing about...

But now i have aids thats helps "sometimes"

That word "SOMETIMES"  is beautiful to me....sometimes is far, far,far better believe me.

Anyway its my day off work today - i'm PF :)  the sun is shining, the sky is blue :) So i'm off for a run, followed by a shower then off into town with my sister for lunch....sounds like a perfect day to me!!!!!! x x x

P.S Before i depart i will add a few links for CH - if it helps one person....that one persons life will have been saved - i know because reaching out to others with CH  has saved me!!













  


Below is a list of links for anyone who may need a guiding hand

[Dr Santos]

Hi,
How are you? Are there other symptoms present? Aside from cluster or migraine  headaches, opthalmalgia or eye pain could be due to a wide variety of disorders  such as infection, irritation, or injury of that eye, glaucoma, sinus problems and even viral infections. If there was no injury to the eye or if there is no history of eye strain also, it is best that you heave this checked by your doctor for proper evaluation. Diagnostic tests such as slit-lamp examination, fluorescein examination and eye pressure test may need to be done. Pain medications may help but treatment will depend on the underlying cause. Take care and regards.