Hey everyone,

I am not a migraine sufferer and don't get headaches, but I can empathize with all of you as the closest person in my life has had 24/7 headaches/pains for the past year and it's excruciating to witness.

I haven't been able to even get this far because normally when researching or looking for information I end up in tears or shaking out of fear that this will just never go away.  So I end up booking an appointment one at a time hoping to find relief.

He describes his symptoms like this:

I have put my notes in square brackets

• Drooping eye lid [he says he feels like one side of his face is drooping, although it doesn't manifest physically]
  
• Jaws and teeth hurt (not so much HURT, but experience a kind of magnetic pulling sensation - limited by words here but that's the best way I can describe it)  [He describes some kind of "magnetic" feeling on the roof of his mouth too, I obviously cannot relate]
  
• Drooping sensation of right side of face [again, he feels that his face is actually drooping and swears he can see it.  I can't see it at all, his face looks symmetrical to me]
  
• Intense pull behind left ear in temporal area
  
• Feels like I'm wearing a very tight hat which has been twisted to the left
  
• Permanently squinting
  
• Sometimes can barely see in front of me and can't focus on a single point
  
• Sensations sometimes move on a second-by-second bases like a gel-like substance slowly moving around my head and face
  
• Constant ringing in my ears / blocked ears
  
• Visual Auras
  
• Very uncomfortable asymmetrical feeling throughout my face
  
• Visual snow
  
• Tightness in left side of neck, but mobility in right side of neck
  
• Has seen chiropracter and his C1 is out to the left, C2 is out to the right
  

He has taken the following drugs with no relief:

• Advil
  
• Various Triptans
  
• Topomax
  
• Pramin
  
• Deralin 40
  
• E-Mycin
  
• Topiramate
  

And more but the empty bottles have been thrown away.  These are just listed from what I found in his cupboard.

He is very debilitated and has moments of extreme despair.  His headaches have taken

Here is a quote he wrote to one doctor describing symptoms:


Quote:

The pain is constant, every second of every day and varies in intensity seemingly completely randomly.  It often causes horrific insomnia where it sometimes prevents me from sleeping for up to 48 hours and the pain worsens the more sleeplessly tired I become.  Although during days where intensity is higher I am in an extreme amount of pain where it feels as if my brain is imploding, the word "pain" often isn't an accurate representation of what I am experiencing, as a lot of the time I am experiencing more of a "discomfort" due to very abnormal sensations occurring throughout my head and face.  Some months I have had to see a psychologist because I feel as if I am literally going insane because of these abnormal sensations because they aquire 100% of my conscious attention where I am unable to think straight and even stringing sentences together becomes an impossible task.  The primary reason I have taken so long to contact you is largely to do with my mental state due to these headaches; where staring at a computer screen and constructing coherent sentences seems like an impossible task because it is so hard to concentrate on anything other than the pain/sensations.  Unfortunately words don't seem to suffice when trying to explain these sensations, but describing them as magnetic pulls in different directions all over my face is probably the most fitting description I can give. I feel as if there are thing ropes tied extremely tightly all around my head and face and they are being pulled in different directions (often moving around my face as if someone is playing tug of war with these ropes).  No treatment has offered any kind of help, where distraction seems to be the best practice. Admittedly, suicide has crossed my mind several times since the onset of these migraines, although I have not yet got to a point where I have "seriously" considered it.  The pain is bearable to some degree, where the biggest difficulty is more that these sensations are constant, every second of every day, and even conversation with other people is so challenging because this pain takes up so much of my conscious attention.  I have become very uncoordinated with my facial expressions, especially on the right hand side of my face which constantly feels droopy (as opposed to the left side which constantly feels tight).  I am developing all kinds of psychological disorders according to my psychologist because of my inability to interact with people and because I have no choice but to lay alone and silent in a dark room for most of my days now.  I easily become very irritable and often forget what I'm doing on a moment-by-moment basis because my thought become so scattered and disjointed.  All of my relationships have fallen apart.  I lost my girlfriend and my entire social life because of these migraines.  I have had to drop out of university because of these and I haven't been able to work for over a year now.  I can't even do the bare minimum requirements to receive allowance from the government.  To be blunt, I feel like I'm holding on by a thread where every day is becoming more and more of a struggle.

We have been to see general practitioner, neurologists (mri and cat scans done and came back clear), chiropractor, physiotherapist, watson headache specialist and nothing has significantly helped.

No doctor has yet to give him a diagnosis, no name has been put to his condition.  They revolve around calling it "migraine", "headache", "tension headache" and other various names but none with certainty.  To be entirely honest, doctors have shown very little empathy and have been very quick to palm him off to specialists.

At one stage he was referred by a GP to a neurologist, the neurologist referred him to a pain specialist, the pain specialist referred him to an ear nose and throat specialist (suspected contact point headache) and the ENT referred him back to a neurologist.  All of these specialists charging $200+ for an appointment where it ultimately just led him back to a neurologist that he started at with ZERO prescription or recommendation, just over $1000 to be sent back to the original person.  It almost seems like a scam circle.

Anyway, he got convinced at one stage (a bit of blind hope I guess) that it was a contact point headache and had a septoplasty to remove a contact point that was found in his nose.  This was 3 weeks ago and has shown no improvement at all.

The chiropractor said his C1 and C2 were out badly, but after months of intensive treatment and another $5000, the chiropractor said the treatment wasn't working, and the exercises and stretches he was performing weren't working and surgery would be the only option.

My brothers posture has looked like this his whole life:

IMAGE REMOVED BECAUSE MY POST COUNT IS TOO LOW - IMAGINE A VERY HUNCHED OVER NECK/BACK

Many people have mentioned it to him throughout his life, it is noticeably bad.

At this point I'm thinking it is most likely a Cervicogenic Headache, as it relates to his bad posture and sounds like similar symptoms (especially considering this type of headache can cause tension headaches which would explain the "band" feeling he is getting around his head).

My brother also prefers sleeping on the floor for some reason since he had this headache.  At his worst times he sleeps on the floor and for some reason won't take any suggestion to sleep on his bed.

Our next step was to send him to the South African headache clinic by Dr Elliot Shevel.  My brother was getting really excited about this and after watching many youtube videos he was again convinced this would fix it.  After doing research today, I alerted my family of some posts where this surgery went horribly wrong, and the suspicious posts of success stories seemingly coming from his son.  We have now decided to cancel that and pursue other avenues before trying what seems to be a bit of a scam and a huge amount of money.

So here I am, typing this forum message with my brother curled up on the floor behind me in a state of total despair and hopelessness.  I don't know what to do, but I'm going to start here.

Hopefully we can find some kind of relief and one day someone will read this post and won't suffer for as long as my brother, my family or I have.  To think that my brother is in so much pain he is contemplating suicide makes me sick to my stomach and sucks the life out of me in an instant making me question my own existence to the very core.

Any suggestions of treatment based on this story and symptoms would be a blessing.

Thanks everyone and I wish you all the best and just hope you have the strength to continue to find relief for yourselves or your loved ones.

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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Suggest you seek a medical center/hospital which has a strong neurology program. That will have a number of medical specialities which  will be of benefit.

I live in Brisbane Australia.

Thanks for the response.  I've been searching for a neurologist that has interests in headaches in Brisbane and struggle to find one.  The last neurologist was very rude and ended up just prescribing him anti-depressants.

Also, my brother is 27 years old and I am 25 years old.

Perhaps I was not clear. I'm suggesting that you seek a large hospital/mental center which does much teaching. Often they are associated with a medial school.

There you will find a number of doctors, from diffeent medical specialities. Being treated there will allow your brother to be seen by several docs, increasing the experience and skill of th folks who see him.

We have several members fromyour area.Hope they will be able to make some sugguestions for you.

G'day, welcome, and our thanks for helping a fellow sufferer. It means a lot to us as headaches of any severity can be a lonely place.

As you've already worked out, a definite diagnosis is the first priority as treatments vary so much for different types. Regrettably, getting that diagnosis ain't always easy.

If you haven't already tried it there's the Multidisciplinary Pain Centre at Royal Brisbane.

Please let us know how you're getting on.

We care.

Thanks for the support guys.

I have an appointment booked for him tomorrow with:

Dr Richard Kahler – Neurosurgeon & Spinal Surgeon

After all my reading I think there's a good chance it's a cervicogenic headache. Hopefully this doctor will perform the anesthetic procedure that can confidently diagnose whether it is his neck.

He has seen a headache specialist physio before but the exercises given did not help. The physio said he had major issues with his C1 and C2 joints. I know my brother didn't give the exercises a good go. He has this really frustrating attitude where anything that he doesn't believe, he won't even try. So when I would push for him to do the exercises he would get really angry and say he's tried them and they don't do anything and it's not going to work because the pain is in his head.

He got really angry at me today telling me I haven't helped enough and don't care about him or it would already be fixed. I know it's just his headache but it hurts to hear him say that :(

Hoping for the best tomorrow.

Please don't take your brothers harsh words to heart. He doesn't mean it. When you are in constant debilitating pain it becomes very easy to turn on the people you love most, and look for someone to blame.

Hang in there, you will get a diagnosis one day and the correct meds/treatment, and all your hard work will be worth while. Lets hope tomorrows appointment will be fruitful.

Your brother knows how hard you are trying to help him, and one day when he's feeling better he'll tell you how much he appreciates your love and support. In the mean time - thank you from all of us for supporting him the way you do. It's what we all need the most, even if we don't always say so.

Please come back and let us know how you get on tomorrow.
Maz.

It would seem to me you are still confused on  a true diagnosis, so maybe get your brother to take the cluster   headache quiz, you can find the link to your left on this page, then you will have a better idea when visiting  your specialist.

So last time I posted was in September.  We went and saw Dr Richard Kahler the neurosurgeon & spinal surgeon.  He basically said there was nothing he could do and they he performs operations, he doesn't really diagnose. Another expensive 20 minute consultation with no results :(

My brother has still been in permanent pain.

It's really debilitating, I can see every day he gets a little more down and hopeless.  The despair I see on his face kills me I can barely think about it.  I feel numb to it a lot of the time but tonight after a small conversation with him I was able to cry for the first time and actually feel some emotion....

He was telling me how he's just constantly confused, every day his perspectives and thoughts on everything change constantly and he's constantly searching for a reason as to why this has happened to him when he knows very well there is no reason....

After the spinal surgeon we booked in for botox with Dr Paul Sandstrom who claimed my brother was a good candidate and would probably see improvements about 80% of the time in patients like my brother.

He had the botox about a month ago and it has had no effect :(... It really feels like no one has any answer.

After almost 2 years now, we've seen every specialist anyone has recommended, seemed to have tried every treatment and literally nothing has shown any improvement whatsoever.  He's becoming more and more depressed, less and less social, it's absolutely gutwrenching to witness :(

I know he has suicidal thoughts because I read one of his doctors recommendations to another specialist that my brother got when I wasn't there and the doctor said he reported suicidal thoughts...  He has never said anything like that to me :( it's so sad to think he has those thoughts and doesn't share them because he's worried about hurting me. 

On some level I just think I'm being selfish, if he's in constant pain and no one can help him and he's only staying alive in constant agony for his family I almost feel like I should just let him do it :'( :'( :'( I don't want to see him living a life of misery just for me and my family

Especially when he just seems so hopeless and it seems to be getting worse and worse each day... 

Just have no idea where to go to next...

No specialist has been able to give even a hint of the cause or any kind of relief whatsoever...

We're going to meet up with Dr Paul Sandstrom, a neurologist again who said he can try some more medication if the botox failed.

It really feels like he's tried every headache/migraine treatment under the sun and right now we're just feeling incredibly hopeless...

If anyone has any suggestions I'd really appreciate it.  Sorry for the negative message, I just love him so much and I guess this is just a cry for help from someone that may have been in a similar situation and found some kind of answer.

For now, I'll post back when we get results or some kind of hope from a new treatment.

It's horrible to hear such bad things happening to people, I am also 27 and get about 4 to 5 cluster attacks a day, without any pf days. It is going on like this for the past 5 years, been to the gp last week and thursday, he took blood for a thyroid function test. Gave him a call today and he said the results are positive for me having an over active thyroid. My brother is 25 years old and does not get a headache of a day old.

IllCureYouBroz, It's a neurologist you need to see - not a neuro surgeon.

There are different headache types that all respond to different meds.That's why it's vital you see a neurologist who specializes in head pain, to get a correct diagnosis, and correct meds. To me, some of his symptoms appear to be CH, but others don't.

While you wait for a neuro/diagnosis, ask your doctor for some oxygen. But, this is vital, it must be a flow rate of at least 15 litres per minute(more is better), with a non rebreather mask. It won't work if you get either of those wrong. No matter what headache type it is, the oxygen will do no harm - far better than taking a concoction of drugs that probably won't work.

If it is CH, ask for sumatriptan injections. You can only use 2 per day, so I use the oxygen when I'm at home and save the injections for when I'm out.

I know your brothers situation seems hopeless and he's in a very dark place right now, we've all been there. But it's not hopeless. It's just a matter of finding the right diagnosis.Most CHers were several years before they got a diagnosis (5 years in my case) because it's so rare. Most doctors will only ever see one case in thier whole lives, and many will see none. Thats why some one trained in headaches, and with some experience is so important.

In the mean time, see if you can get the oxygen. It's a life saver for most of us and will do no harm regardless of which condition your brother has.

Hope this helps
Maz.

Hey IllCureYouBroz,

Sorry to hear your brother is having such a terrible time...

As it appears he's been to a number of neurologists and had the requisite MRI/CT Scans to rule out any of the more serious causes of his headaches, there are two things he needs to try...  Oxygen Therapy and vitamin D3 replacement therapy.

One of the CH'ers there in OZ and possibly in your area, should be able to give you the "How To" obtain oxygen therapy for cluster headache there in Brisbane.  AussieBrian, Hoppy?

Oxygen therapy can be a lifesaver for most CH'ers if used early in the attack and properly with flow rates that support hyperventilation... 

Your brother will likely need to see a neurologist to obtain an Rx for oxygen therapy.  The Rx should read " Oxygen therapy for cluster headache.  Administer at a flow rate of 15 to 25 liters/minute with a non-rebreathing mask."

Please let us know when your brother gets the Rx for oxygen therapy and the equipment has been delivered.  I'll send you the procedures that work exceptionally well with reliable and rapid aborts.

The other thing is your brother is likely vitamin D3 deficient...  That's an easy long distant call for me as most Australians are vitamin D3 deficient... even with all the sun.

The skin of an adult with fair skin can generate upwards of 15,000 IU of vitamin D3 when exposed to the UV-B in direct mid-day sun in as little as 10 minutes... if clad in a bathing suit without any sun block.

Unless your brother is a lifeguard or roofer, I doubt he's getting that kind of sun exposure... Exposing face and arms will not generate sufficient vitamin D3 to prevent CH or migraines.

The simple thing to do is for your brother to see his primary care physician for a lab test of his 25(OH)D serum concentration.

25(OH)D is the metabolite of vitamin D3 that's used to measure its status.  The normal reference range for the 25(OH)D lab test is a serum concentration of 30 to 100 ng/mL, (75 to 250 nmol/L).  Medical diagnostic labs in Australia generally use concentrations measured in molarity, i.e., nmol/L.

I'll wager a Bundy & Coke, your brother is vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of his headaches...

Over the past four years we've found the best vitamin D3 replacement therapy is called the anti-inflammatory regimen.  Over 600 CH'ers here at CH.com have started this regimen and better than 80% of them have experienced a favorable response... 60% of them have experienced a lasting pain free response.

You can read about this regimen at the following links:

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Take care and please keep us posted.

V/R, Batch

G'day ILLCureYouBroz,
Sorry to read your brother is in so much pain, but assure
him, we've all been there, and there is light at the end of
the tunnel. About the oxygen as Batch mentioned, give
the Multidisciplinary pain centre at Royal Brisbane a call
to see if they can help your brother get oxygen for his
CH's.

Cheers, Hoppy.

I've got oxygen from BOC when over in Perth. To set up an account I had to fax them a letter from a doctor saying that I needed oxygen for CH. I'd already got my mask which I'd got from the CH store and a regulator which goes to 25lpm from BOC NZ.

G'day and hope things are looking up for you.

You can get oxygen at home with a script from your GP. You'll be dealing with Oxycare, ph 1800 050 999, and you'll be looking at around $42 a month rental on a regulator up to 15lpm and an E bottle which will last 4 hours or more altogether, then about $40 a refill while you take it in yourself.

They can get you started within a day or so while the script is worded correctly and getting the right mask shouldn't be a big problem.

I just spoke with them on the phone, a girl named Nicole, and it all sounded totally professional and organised. Bit of a surprise nowadays.

Please let us know how you're getting on because we worry.

Best ever for Christmas,

Brian up norf.