Cluster Headaches

Mad_Max

Recently been told by a doc that I have something called cluster headaches.

Been doing my research into and it seems quite rate (.1% population)...small chance but any boardsies have any experience(s)??

Seems to be something that works in cycles and can affect for anything up to a period of months at a time. Luckily mine seem to have stopped after 3 weeks but by God I tells ya it was horrible. Not looking forward to it again!!! The worst part for me is so far I don't really respond to the meds

Be nice to hear from anyone who has more insight into this (without google ).

star-pants

Unconfirmed but I think I suffer from something like this too, but I reckon it's linked to my fibromyalgia, you can get headaches with that.

I've had them from anything from a few hours to a few weeks. It completely horrible, I get them at my temples/the front of my head mostly, behind my eyes and it's most annoying. Sometimes you can't sleep and nothing really takes the edge off and obviously you don't want to be taking paracetamol or something all day every day for a few weeks!

I just try and avoid anything that might aggrevate it , like loud loud music, lack of fresh air, sometimes chocolate/caffine, or being too warm etc.

Has your doctor suggested anything?

Mad_Max

Not really to be honest. When I got discharged from the hospital they gave me something called amatryptylin but that done nothing. Like I said it just stopped one morning. The advice I got was if it doesn't stop, come back!

I agree with you with the paracetemol thing. I just refused to take any more because I knew they weren't doing anything good.

From what I've been reading there seems to be a differing opinion on what to do to prevent/abort an attack. It seems to be case by case basis. Some people say water, lots of water does the trick. Others use 10% oxygen and other some medicine.

star-pants

I was on amytriptyline for my fibromyalgia (also the headaches are most likely part of my illness) but I had a reaction to it. AND it didn't help with the headaches.

Water and fresh air / oxygen is meant to be good too.
You're right as it can be a case by case thing, certain food items make certain people worse. Also situations if stressful can effect things.

old boy

i suffer from cluster migraines, for me they last 11 days, solpadol solubile is what i use, today i had to take the 2nd dose, (2 tabs at the time), i hqve another 9 days to go, sometimes they have ceased for only a few days when they start up again, one of the worst things i find is to describe something, ie have you seen the news, i have trouble searching for the words the news, also i can give the reaction of being drunk. recently i was perscribed kapake ( i popped my pelvis twice in the space of a month) i also suffer from severe back probs, while i was on it i had no migraine.

dirtynosebeps

Mad_Max wrote: »

Recently been told by a doc that I have something called cluster headaches.

Been doing my research into and it seems quite rate (.1% population)...small chance but any boardsies have any experience(s)??

Seems to be something that works in cycles and can affect for anything up to a period of months at a time. Luckily mine seem to have stopped after 3 weeks but by God I tells ya it was horrible. Not looking forward to it again!!! The worst part for me is so far I don't really respond to the meds

Be nice to hear from anyone who has more insight into this (without google ).

dont have much insight but i've been up with the damn thing for the last 3-4 hours. cant sleep at all. so i began researching (googling) painful throbbing eye and this has led me to cluster headaches

LegacyUser

My husband suffers from this condition, He has had cluster headaches for six years now. they can last from weeks to months the longest being 10mths with out a break, Tried all kinds of medication last one being verapamil this worked for just a year, Clusters now returned with a vengance. Headaches ever two hrs lasting 1/2 hr or they can last 2 hrs, somtimes awake every night, no one understands what this is like, Doctors differ every time they don't care, no one has recomemded oxygen or surgery to us. This dosent effect just the patient it effects the whole family. No one in this day of advanced medicine should have to suffer like this. Is it any wonder cluster headaches are refered
to as suicide headaches.

star-pants

demonte I feel for you and your husband, I don't have them half as bad as he does, but longest was 3-4weeks running and my goodness it's horrible.
You can't concentrate, you can't sleep and it makes you cranky.
It is unreal how in this day things still aren't clear. My mother has had rheumatoid arthritis for the past 25+ years and they still can't get it right.

I assume ye have tried things like acupuncture or alternative methods too?

FluffyCat

I get cluster migrains but in a funny way! I get the aura but not the pain, just funny vision. Went to the doctor and was told to 'Deal with it'. So I dont think theres much you can do about them

Dizzyblonde

I'm in contact with people who suffer with migraine and in particular migraine associated vertigo.
From what I hear, the book 'Heal Your Headache' by David Buchholz can be very helpful.

dcr22B

My Dad has had them for 25 years and it's been a horrible time for him and us. He has tried pretty much everything. He hasn't had the oxygen treatment but had visited a specialist in London on the recommendation of his specialist in Beaumont. There is a risk of a potential stroke with the oxygen treatment.

I could write an essay about all his experiences but he's just recently come out of a 4 month stint of headaches and he's just been physically drained by them.

MrB's LoveChild

To Mad Max

I was diagnosed with cluster headaches back in April this year. They and the medication I have been on have almost taken over my life this year, however, I refuse to be beaten my this. People that haven't been effected by this have no idea what this infliction is like... the lead up to an attack is almost as bad as the attack itself. The pacing around. The puffiness of the face. The irritation of people being around you, noise, pretty much everything becomes an annoyance. The agitation that you have before an attack... people that know you well know when you are about to have an attack by the way that you change. You have no control over this (for want of a better word) beast in side of you. There are no words that can explain when the attacks start... the pressure and stabbing pain behind my eye is intolerable. Then as it spreads like someone has pieced my eye with a hot metal rod and drives it in through my brain till I can feel it towards the back of my head. The pain is magnified so much that it almost feels like I can trace the pain down one nerve in my brain. Then they just stop.... that's it.... no more.... except feeling physically and mentally drained... they vanish.

There is no relieve (well at least at this point) to the pain. Normal over the shop remedies have no effects. Even those sort from A&E are of little to no use. The fact that you are looked down upon by certain medical staff is a testament to how little is known about this infliction. The sense of isolation that comes from this disease is horrendous as you just feel like no one understands what it is you are going through.

I have been very lucky in that I have a fantastic GP that wouldn't rest until he found an answer. And due to his diligence and persistence I have a great Neurologist who seems to be pretty much up with the curve of new treatments.

I have tried, Amitriptyline, Isoptin, Imigran, Frovex, plus what seems like an endless supply of other medications. What will more than likely happen is that they will find a medication that you take as a preventative measure and they will try you out with something for the attacks. This can involve many different trials and errors. What has worked for me is Sanomigran... it is very sedative and makes life quite hard in that your almost in a haze, but it worked for me for a few months at least.

They say that this is the worst pain that humans can endure... so if you can get through this you can get through anything.

I hope you find something that works soon.

LegacyUser

Mad_Max wrote: »

Recently been told by a doc that I have something called cluster headaches.

Been doing my research into and it seems quite rate (.1% population)...small chance but any boardsies have any experience(s)??

Seems to be something that works in cycles and can affect for anything up to a period of months at a time. Luckily mine seem to have stopped after 3 weeks but by God I tells ya it was horrible. Not looking forward to it again!!! The worst part for me is so far I don't really respond to the meds

Be nice to hear from anyone who has more insight into this (without google ).

Don't know anything about your condition, but I was diagnosed with cluster headaches about fourteen years ago. My condition was textbook (usually very intense pain behind one eye or the other, usually not both eyes at the same time, but could be behind either one; the pain was not a throbbing pain, but more like a stabbing constant pain; usually made the eye water and contract or close partially; would usually last about 30-45 min; and could occur as many as three-four times a day, but there was not a pattern to how many times a day they would occur or how many days they would occur; sometimes they would retreat and I would not experience them for several weeks). After seeing many physicians and taking many prescription drugs, with no relief, I finally saw a neurologist that suggested a solution that cured me. At that point I had suffered with this condition, off and on, for more than 10 years. The Dr. suggested that my problem was from nicotine deprivation. He said that my body was simply not getting enough nicotine and that the blood vessels behind my eyes were contracting as a result. I had been smoking at least a pack of cigarettes per day for about twelve years. I had tried to quit or cut back several times throughout those years and that was what most likely triggered the cluster attacks. The Dr. suggested that I quit smoking and dipping and allow my body to adjust. After about two months of very severe attacks my body finally adjusted to not having any nicotine and over the past nine years I have only had two encounters with those types of headaches. (One of those encounters happened on the heals of breathing second hand smoke for about a week while riding with a smoker in the same vehicle on long trips while working in the summer of 2004). That was the last encounter.

I don't know if this information helps at all, but I pray that you will find a solution to your condition.

Bobby Baston

DuncL

It might be worth a try. If it works, it works very well.

The_Conductor

I was diagnosed with acute migraine (partially as a side effect of all the medication I'm on for Crohn's Disease)- and after an MRI confirmed nothing more serious- put on a twice daily dose of Inderal and an infrequent dose of Zomig for when I feel an attack coming on. They have worked wonders for me- from frequently not being able to stand up (I'd fall over), having a pounding headache, and vomitting even water- I don't have to worry nearly as much anymore. Acute migraine wasn't initially diagnosed- because I don't have a light sensetivity- but I certainly got the other sympthoms in spades.......

LegacyUser

hey guys,
i have recently been diagnosed with cluster headaches, i've had the headaches for a year now, i get about 20-30 of them a day, most only last a couple of mins but i've had a few that lasted 10mins and left me so drained that i couldnt walk or talk afterwards, and i slept for 14 hours after, i've been to the hospital a couple of times, first time, they told me i had tension headaches, i knew this wasnt true and i left the hospital crying because the doctor just didnt listen to anythin i told him, they done a ct scan that day, but i had a bad cough and they never sent the report to my doctor, prob cos the film would have been so blurred from my head shaking everytime i coughed....anyways, since then the headaches have got more frequent, usually i can distract myself from the pain, but i find myself not able to speak when they hit, and i'm also getting confussed alot, when i went back to my doctor a couple of weeks ago he decided i should go to see a neurologist asap and requested an mri scan for me...2 days later the request form came back to my doctor with a post it note stuck to it, saying 'had ct scan, thanks R.R (doctors initials)' THATS IT!? still no sign of the ct scan report. the doctor is now worried that i might have a cyst on my brain....that was the reason for the mri request...how can doctors have such total disregard for peoples health, this is my brain, i havent a pain in my little toe!!

i dunno why people cant understand...this is just torture..

sam34

Damien , please read the charter,'particularly with regard to recommendations. post deleted.

KenSwee

Hello,

I have suffered with Cluster headaches for over 20 years. It stared at about 16. Right now, I'm going through a very bad spell at the moment with one huge 'attack' every night. It almost seems like there is a squadron of bombers dropping huge stinging bombs on the side of your head.

5 years ago I went to see an oral and facial pain specialist through a dentist friend and he was the first to actually diagnose me properly. He put me on a combination of prolonged release tablets with pain and inflammation suppositories. The release tablets are supposed to calm the brain and the suppositories seem to work faster than any other pain release. The suppositories can be uncomfortable to use but compared to the pain I get, it's a very small sacrifice. They usually kill off the attack after about 15 minutes. I am currently on the same treatment with a review this week.

I don't wish to give any more information on my medication but I would strongly recommend seeing a specialist before taking any type of drug, either over the counter, prescription or elsewhere. I spent years of sick stomachs and worse because I took too many over the over the counter pain killers through self misdiagnosis or through my GP not understanding what was wrong. Specialists cost a bit more than your GP but if you are like me, then you could be lucky with just one visit to sort you out every few years or months.

I'm not sure if there is an on-line or meeting group for this but if there is, I would appreciate anybody letting me know.

Also, if there are any clinical studies being carried out, I have plenty of documentation on my attacks. I'm not sure how useful they are but they are there for professional people to study. I try to take a note of all my recent attacks. I find it helps to see if there is a pattern.

I recently found a website for sufferers.

http://www.clusterheadaches.com/

Gormal

I suffered from them when I was younger, due to stress, then they gave way to migraines and black outs. I was prescribed naramig which helped but made me rather dopey I changed my lifestyle or more importantly my outlook on life and gradually the migraines stopped too..... yes I was lucky.

On the other hand my partner suffered severe migraine attacks for years, I eventually got him to go for an eye test. He got glasses with a tint/anti glare coating and the migraines left.

I'm not saying this will work for everyone, but it might help some to get an eye test.

flutered

i have the bastads since 97, now i have ostio arthritis in the neck which is also cause headaches

The_Conductor

flutered wrote: »

i have the bastads since 97, now i have ostio arthritis in the neck which is also cause headaches

Osteo-arthritis in the left knee, both ankles and some of my fingers for me :mad: