Questions;

19 Aug, 2012 - 10:03 pm

Hi,

I am a 25 year male from Victoria.

Roughly 3 years ago I started getting attacks that would knock me off my feet and leave me rocking in my bed for days on end. These attacks seemed to occur over a period of two to three months (one a week lasting between 2-4 days) then I would be clear of them for 6 months to a year. I was diagnosed with severe migraines after seeing numerous doctors and neurologists (too which I am still seeing today). The past 12 months have been somewhat ridiculous. I have spent as long as two months in my bedroom without leaving my house for fear of having another attack (these attacks or constant, having a days break at most between attacks). After numerous trials on medications and increasing attacks I felt my current gp and neurologist were not understanding the extent these attacks were effecting my life and decided it was time for me to do some research myself. I have come across this page and felt like I was reading something I had typed. My initial question is this, I also have visual disturbances and nausea during these attacks. Not to sweep aside the pain that comes with migraines but I feel these attacks are far more than that. Do other people have these symptoms? Basically, do I bring this condition to my neurologist even though I have these additional symptoms that are common in migraines? Secondly, I fear these attacks may eventually cost me my job. What do I do? This is wrecking my life and a promising career I had worked hard at.

Kind regards,

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19 Aug, 2012 - 10:22 pm

Also,

Here is a list of medications I have tried with little success so far.

Imigran tablet
Imigran nasal spray
Sandomigran
Relpax
Maxalt (currently on - roughly 2 weeks in)

I also use Maxolon but this is for the nausea side of the attacks.

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21 Aug, 2012 - 4:14 pm

Unlike gunolf I have found benefit from:
Imigran tablets
Imigran nasal spray
Maxalt wafers
Although each of these is somewhat slow to work (up to 30 min)

Best option for me for strong attacks is oxygen (relief in 10 - 15 min and no side effects)

Mild attacks:
Energy drinks (Mother, Monster, Wicked, Red Bull, "V" etc)
Aspirin - soluble (2 x 300 mg if very mild, 3 x 300mg if a bit stronger)

However I am relatively new to this (about 10 months) so I am still learning what works best. From the experience of others there would seem to be wide variability in what works best for individuals. Oxygen seems to be the most reliable abortive reatment available at present, see article below:

http://latimesblogs.latimes.com/booster_shots/2009/12/cluster-heada
che-oxygen.html
"When asked to rate their pain relief, 78% of patients said they felt fine within 15 minutes of breathing high-flow pure oxygen. By contrast, only 20% of patients had the same response after being treated with high-flow regular air. Oxygen continued to outperform air at 30 and 60 minutes after the onset of the attack, according to the study. The researchers didn’t report any serious adverse effects."

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22 Aug, 2012 - 4:31 pm

Gunnolf,

I would have no hesitation in bringing these new symptoms to your G.P and Neuro, you should even print out some of the info located on the left hand side in the various tabs and take it with you and show them what you have found out. If you find that you are not getting the results that you want then there are a number of Dr's listed for the various States that understand this condition and can confirm if you do have it or they a severe migraines and can offer different abortive and preventative medications if the ones that you are on don't seem to be working. There are so many meds out there that work for both conditions.

Please remember that we are not Dr's and that you should consult your Dr before starting or stopping any sort of medication or treatment.

Good luck for when you next see your local G.P or Neuro.

Matt
Silent Planet

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23 Aug, 2012 - 3:55 am

G'day Gunnolf,
sorry to hear you're suffering so much, hopefully we can answer some of your questions in a way that makes some sense to you.
As Matt says, we aren't doctors, so check all information for yourself.

First and foremost; it's entirely possible to have more than one condition at the same time, so when your doctor says you have severe migraine, it doesn't mean you ONLY have migraines.
If you haven't already, you should start a diary listing symptoms, strength of attacks, length of attacks, time of day, what medication you took, when you took it (at first sign of an attack, some time into an attack), did it do anything (helped a bit, no help at all, stopped the attack, made things worse- that sort of thing); what did you eat and drink that day; and any other things which you feel might have had something to do with an attack- very smokey day, fuel spill in the area, whatever. The more information of this sort you have, the better for your doctor to make an informed diagnosis. It's extremely important to be totally accurate, though. Generalizing won't do you any favours here.

As BlueDevil says, there's plenty of things that can help besides meds - oxygen can work wonders if done right, and if it DOES work for you, then it's a pretty sure bet you've got CH too.
Do read up on the information on the left, maybe print out the leaflet which will help explain what's going on to your co-workers, boss, family and friends.

We know what you're going through Gunnolf, and we know it's scary. Ask questions, we'll help if we can.
Above all, if it all starts getting too much for you, get professional help fast- pain management units can help you cope while you're finding a medication regime that works for you.
Good luck to you,
cheers peter.

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26 Aug, 2012 - 4:35 pm

Hi Gunnolf - welcome but I'm sorry you had to come looking.

As Peter said, it is possible to suffer from multiple types of headaches. After several years with CH I've now been diagnosed with chronic CH (although reducing in frequency with the current treatment regime I started in May) and migraines.

Also, a headache diary is a fantastic tool to help notice any changes, triggers, impact of meds etc.

It wasn't until I started the HA diary that I was able to get diagnosed. For me the verapamil (Isoptin) and Maxalt has been fantastic (along with leaving work - I'm sure that helped) - I still average 30/month at the moment but that is soooo much better than 90-100/mnt that I almost feel cured!

Good luck with finding a regime that works for you. There is so much support and information with this group and on the site! It's been a great help to me.

Regards
Katherine

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