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Cluster Headache Help and Support >> Cluster Headache Specific >> A little of your knowledge and experience please?
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Message started by R33_Ian on Aug 6th, 2011 at 12:32pm

Title: A little of your knowledge and experience please?
Post by R33_Ian on Aug 6th, 2011 at 12:32pm
Hi all, just had a kip6 or so attack, aborted with sumatriptan and helped by half an hour with half my head submerged in a hot bath. It started with a cramping pressure in the back of my neck/base of my skull and that is exactly what I have now after half an hour of peace.

My question is could this be like a hangover from the last one, or a new one, or a reaction to the triptans?

I know you won't be able to diagnose anything much from this but I'd like to know if you've had similar experiences with rebounds and such. I'm a bit new to this and my last bout had a definate start and end where as this just seems to drag on.

Ta muchly

Title: Re: A little of your knowledge and experience please?
Post by Maxpane on Aug 6th, 2011 at 1:17pm
13 yr sufferer here.  Most times they have a definite beginning and end.  Occasionally, the ones that hurt so bad you think you cannot stand it, I believe, take such a toll on your body, that there is a hangover effect.  I have found that the best way to get rid of this is a hot shower.  Baths do not work for me AT ALL.  However the very hot water hitting your head focuses the nerves attention on that, rather than the pain.  If you have to sit, do so, but in my 13 years of dealing with these, nothing compares to a very hot shower, while breathing deeply and exhaling slowly.  Good luck.

Title: Re: A little of your knowledge and experience please?
Post by Guiseppi on Aug 6th, 2011 at 1:25pm
I get both Ian, the headache hangover...if it gets much over a KIP 6 even if i beat it I'll get that lingering pain like i got hit upside the head with a 2X4.

Then there are the shadows, the lingering pain that feels like a CH starting, all the usual side efefcts, dripping nose, droopy eye, tension down the neck, it just feels like the beast can't quite get his toes in. 02 will sometimes defeat the shadows, occaionally I'll pop an excederin for migrains....but REALLY limit those as they cause rebounds if taken too much. An energy drink, over ice, helps sometimes too.

Joe

Title: Re: A little of your knowledge and experience please?
Post by Maxpane on Aug 6th, 2011 at 2:06pm
Tension in the neck and upper back, droopy eye, and absolute exhaustion are very common with mine.  My neck and upper back are stiff as a board during my whold cycle.  I can actually feel one starting in the back of my head as I am typing this...shit...here we go.  Mine always start at the base of my skull in the back right side and then progress to the front until my eye feels like its going to pop out (the severe ones anyway).  I think you have to find what works for you because as much as we are all alike, we are that much different as well.  Genetics, allergies, varying sensitivities and resistances to everything from drugs to light to the smell of gasoline or perfume.  We are all so alike and yet so very different. 

Title: Re: A little of your knowledge and experience please?
Post by R33_Ian on Aug 6th, 2011 at 4:22pm
I don't know what I've done wrong but not long after posting I had to take another imigran as it got worse. This gave me relief for an hour or so and now I can feel another one brewing! This will be the third attack in 7 hours and I have nothing to help. Energy drinks and the painkillers I have do nothing. Looks like I could be in for a very rough night!

I had my first ever bout of this just over a year ago which lasted 7 weeks. This year I've had low kip sporadic headaches since February with a few full blown attacks thrown in but not many and only ever one a day. I don't know what I'm going to do! What happens if you take too much Imigran? All I know is it says no more than twice in 24 hours.

Title: Re: A little of your knowledge and experience please?
Post by Linda_Howell on Aug 6th, 2011 at 4:31pm
Imitrex CAN and DO cause rebounds.  I noticed you didn't say anything about oxygen.  With 02 as an abortive, you can very much limit your Trex usage.  I hope your're able to try it.  Most here can abort a HA in 10 mins or less and....no rebounds from it.

Title: Re: A little of your knowledge and experience please?
Post by R33_Ian on Aug 6th, 2011 at 4:36pm
I would love to try it Linda but I've not managed to get any yet. I've had a tough time with doctors and I've only just got an appointment with a headache specialist but that's not for another month. My GP doesn't want to prescribe anything but the norm!

Title: Re: A little of your knowledge and experience please?
Post by Batch on Aug 6th, 2011 at 7:12pm
Ian, Max,

Oxygen therapy at 15 liters/minute IS the norm...  and it should be the first abortive of choice followed by the triptans if you get a runaway CH and can't bring it down with oxygen after 20 minutes...

You've no idea what sumatriptan succinate is really doing to your heart...

Show/send/email/fax your GP the following chart from the National Guidline Clearing House managed by DHHS. 

It's the EFNS guidelines and standard of care on the treatment of cluster headache and other trigeminal-autonomic cephalalgias. 

It was prepared by a task force of giants in the field of neurology specializing in cluster headache and other primary headaches.  They see more patients with cluster headache in a week than most general neurologists see in a life time. 

They include:  Dr. Arne May, MD who led the task force and is the leading neurologist in Germany when it comes to functional and structural neuroimaging in the diagnosis and treatment of cluster headache.  "Dr. Peter Sandor" MD, is one of the leading neurologists specializing in cluster headache in Switzerland, he is the Senior Physician of Head, Headaches, and Pain Clinic, Neurology Department, University Hospital Zurich.  And Dr. Peter Goadsby MD, is well known in cluster headache circles here in the US, in the UK, OUCH-US and OUCH-UK.

This chart summarizes is what they suggest when treating cluster headache and the priority in which they should be prescribed and taken.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Make sure your GP has this chart in hand when you make your request for oxygen therapy at a flow rate of 15 liters/minute with a non-rebreathing mask.

If he pitches a hissy about the flow rate, ask him the following question:

"What happens to arterial CO2 levels when total lung ventilation is limited to 9 liters/minute by the oxygen regulator and non-rebreathing mask and there's any physical activity?"

He may not know about oxygen therapy as an abortive for cluster headache but he should remember repriatory physiology 101 from med school...  The answer is:  CO2 levels rise...  and that will prevent the abort with oxygen therapy...

Take care,

V/R, Batch


Title: Re: A little of your knowledge and experience please?
Post by cristeenam on Aug 6th, 2011 at 10:32pm
I was having a lot of rebound attacks prior to discovering the imitrex tip listed on the board. Injections work the best by far, and by using only a third of the vial it keeps the rebounds to a minimum. There are days when I have a shadow that will not go away, but I had that prior to being treated. I went many cycles without any meds and the only thing I take now is the sumitriptan. The only time I have side effects is when I use the whole vial at once. I know how frustrating it is waiting on a specialist, but I know it will be worth it. I also work with a gp who doesn't like to step outside the box. Your gp should be able to change your rx to the injections with just a phone call. You may also want to get one for the nasal spray since many insurance company's limit the amount of each product they will pay for every month. Good luck to you.

Title: Re: A little of your knowledge and experience please?
Post by R33_Ian on Aug 7th, 2011 at 2:00pm
Thanks again Batch. I'll be taking that with me next time I go in, although I do remember showing it to my GP around this time last year. His answer was...'I wouldn't really prescribe any of that, I'd leave it to a specialist'. Unfortunately the 'specialist' I saw thought I was too young for CH as I was not yet 50...Doh! I've arranged to go to a headache clinic at a much larger hospital so hopefully this will bring better results. Thanks for all the posts guys.

Title: Re: A little of your knowledge and experience please?
Post by RichardN on Aug 7th, 2011 at 2:46pm
  "too young for CH" . . .  your "specialist" needs another specialty!  We have members who are in their teens and others who have had them since their teens.

  What kind of pain meds are you taking?  Generally, narcotics are considered useless for CH & reportedly can cause rebound attacks.  I personally have a script for percocet (osteo-arthritis), which when in high cycle (like now), I use very sparingly (prefer the back ache to possibility of triggering a CH attack).  I'm chronic (10+ yrs now), water therapy for last six years as preventive, and 02 (our miracle abortive), ice packs, and (now) energy drinks to kill the beast . . . most at kip 5-6 . . . kip 8s+ if I delay getting on the 02,Rock Star, ice packs.

  Had a Kip 9 last week (first in a while) which left me with an extremely sensitive/painful to the touch eyebrow for 20-30 min and a bruised-feeling side of head (the 2x4 upside the head feeling Joe mentioned) for well over an hour . . . . disconcerting because you realize it might be difficult to identify another hit coming because of the lingering pain.

  Copy Batch's "therapy recommendations" chart . . . also a copy of the "Letter to Colleagues and Employers" (Getting to Know Ya board . . . at the top . . . Important topics).  Take back to your GP.  Everyone knows the intensity of a 5-10 second "brain-freeze" . . . ask how he/she would like to have that (and worse) pain in his/her eye, sinuses for 20-45 min . . . or longer . . . several times a day/night . . . WITHOUT a working abortive.  Unconscionable!

  Hope you get some relief (and 02) SOON.

    Be Safe,    PFDANs

       Richard

Title: Re: A little of your knowledge and experience please?
Post by R33_Ian on Aug 11th, 2011 at 2:21pm
Richard, I'm currently taking sumatriptan when needed and Pizotifen as a preventative though it doesn't really work. I'm currently working my way through the more typical migraine treatments until I get to the headache clinic next month.

Batch, do you have any information about the effects of sumatriptan siccinate on the body? Whether it be fact or conjecture I would be interested in having a read.

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