Hi,

I've joined this forum to try and get some more info for my husband who is in the process of being diagnosed with CH.

It all started with what we thought was sinusitis. Swollen eye, headache around the eye, pressure and pain, one constricted pupil and one dilated, blocked nose. At first the pain wasnt too bad but then it built up and built up. Dr prescribed sumatriptan 50mg which worked well if taken in time but took a long time to work if the headache woke him from sleep. Two weeks of daily headaches and tablet taking followed and the there was a few days gap, then a week and now it's three weeks since an attack with pain.

The only thing is the other symptoms are still there. The swelling of the eye, blocked nose, pupil changes, heaviness around the eyelid come on but there is no pain or just a tiny tiny amount. He doesn't need to take a tablet and it goes on its own. Is this the 'shadows' I've read about? If so how long do they go on for? Also he seems to be constantly feeling like he's getting a cold. Does anyone else suffer from this?

His hospital appointment isn't for another two weeks and he will have waited two months from seeing his Dr when we go but I'm afraid there won't be any answers. His Dad (who sadly died a few years ago) suffered terribly from CH, banging his head on cupboards. We've been told it's hereditary but it was worse for his dad as he was a smoker (my husband isn't).

Anything anyone can tell us would be brilliant. There seems to be such a lack of information out there. We've been trying to work out the triggers and hunger, strong smells, chocolate, alcohol and extremes of temperature seem to be ones but it's hard to tell.

Look forward to your replies

Thank you in advance  :)

Hey Tinkerbell,

Welcome to CH.com.  You've come to the right place as we know what you and your husband are going through.  The good news is it doesn't need to be that way.

When you see the doc, be prepared.  Take along a copy of the attached HOOF for home oxygen therapy and if the DX is cluster headache, have the doc sign the HOOF.

The folks at OUCH(uk) will tell you what to do next to obtain the needed oxygen and equipment as an abortive for CH.  Give them a call at 01646 651 979.  Their website is: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Check you PM inbox for some additional info.

Take care and please keep us posted.

V/R, Batch

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Hi Tinkerbell
Those symptoms you describe sound pretty typical for the average CHer.  It is entirely possible to have all the related symptoms withou the pain or very very mild pain. There is no mistaking that feeling no matter how mild it is.
Batch has given yo good advice and also i see he's sent you a PM.  Read it carefully and seriously. I've no doubt it will be about his D3 regime. Also, if sumatriptan tablets seem to help, ask your doctor for the auto injections instead. They will take away the worst CH in about 7 minutes, and I've never had one fail.
Some people have triggers which they are able to identify, but mine come out of the blue, so don't overload yourself things you must avoid. I'm sure any strong triggers will make themselves apparent eventually. Keep a headache diary of food, drink, smell, activities, etc, and you may be able to marry something up. Check wat he did the day before too, in case the reaction is delayed.
The general concensus is that smoking doesn't make any difference Many people have given up but had no improvement to their CH, and plenty of non smokers, children and even babies can get CH.
Good luck with your appointment, and come back here any time. There is much more knowledge on this site, than any doctor you will find.  Keep us posted.
By the way, I'm in the UK too.
Maz.

Hi and welcome

When CH first starts it can take weeks, months or sometimes years to settle into the classical pattern of CH symptoms, so just because the symptoms aren't following the text book pattern does not mean much other than it can make it a bit harder to diagnose as the process involves matching the symptoms plus ruling out any other possible cause of them. This is why we always strongly suggest that people work with a headache specialist.

The 50mg sumatriptan can be effective at killing off migraines although even then the 100mg tablets are more common. With CH the tablet form is generally ineffective as it takes too long for it to take effect, so we normally use either the injection or nasal spray versions which can work in a few minutes. Sumatriptan is the generic form with imitrex and imigran being trade names of the same drug.

For some people there is a hereditary link for CH (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) with the gene present in about 3-4% of males and 7-10% of females who have CH. But most people with CH do not have a relative with it.

For some unknown reason people with CH are also likely to smoke, but non-smokers can get CH too. Apart from the normal benefits of giving up smoking, the impact for people with CH is mainly around increasing the options of using some drugs to help control CH.

Trying to figure out CH triggers isn't too easy, with the most common one being alcohol, with hunger, strong chemical smells, being tired, stress (high / low / transitions between high and low) and high / low temperature ones being also frequently mentioned. But plenty of CHs just happen with no obvious trigger, so don't go crazy trying to figure everything out or try to avoid every possible thing that might possibly be a trigger.

Before you go to the appointment do write a list of questions that you want to ask, then tick them off as you go through them and take notes. Otherwise it is so easy to get out of the appointment and realize you forgot to ask something.

Keep us updated with how he gets on.

Thank you all for your replies and PM's. We have some serious reading to do tonight. Means a lot to have somewhere to come to chat to people - friends are great but have no idea what it's like and think it's just migraine or he should go back to the Dr.
I'm sure we will be back with more questions very soon.
Thanks again all  :) :) :)

hi you have got good advice from the above members.a doctor once gave me 3 lots of amoxilin one after another thinking it was sinus infection.most doctors havent a clue.

Thank you for being a great supporter of your husband. Supporters are something we value here.
Having the symptoms without the pain is referred to as a phantom headache or attack. If he is experiencing the symptoms with a low level-always there-irritating-damned SOB feeling it's referred to as a shadow headache. Many of us use an energy drink such as Monster or Red Bull. I down a shot of 5 Hour Energy drink and the shadows disappear in about 7 minutes.
Good luck with hospital appointment.