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1s time poster.a few unusual things.hopng for tips (Read 4935 times)
Jangly Mark
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #25 - Aug 6th, 2010 at 8:10pm
 
Thanks again for all your replies.
Yesterday and last night was pure hell.
Seems to have calmed down a bit today, so, hopefully this will be a shortish bout. (Fingers crossed).

I've been back to the doctor today.  I made sure that I described in quite some detail the exact nature of things, and made sure I used the words 'cluster headaches'.

She said that while I haven't officially been diagnosed, everything did indeed seem to fit.  She also said that she couldn't prescribe me the oxygen mask, even if she wanted to (which was what I wanted), but, she has referred me to a neurologist.

In the meantime, she's given me 'sumatriptan nasal spray' (10mg) for the pain, but, only 2 doses.  Gah.

Don't know how effective that will be (and some of the potential side effects are scary), but, I'll give it a shot next time I get a full on attack.

One question...without anything more than is really a shadow, I've had a lot of gloop come from my sinus/left nostril.

I know it's easy to get any kind of sinus complaint mixed up with CH, but, if I have developed a sinus infection or similar on top of the CH, could that make the CH worse?
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #26 - Aug 6th, 2010 at 8:45pm
 
The CH beast is a thing without humor and a sinus infection, cold or flu can irritate it.  All of the above would help to put pressure on the nerves in your head associated with CH.

Get tested or take antibiotics in case it is an infection, but keep in mind you wouldn't be the 1st to be told it's not CH or migraines it's a sinus infection.  I went down this road and it got ugly, went through three rounds of antibiotics and Dr finally realized it was not an infection.   In the mean time the antibiotics irritated the CH beast and things got a whole lot worse from there.  It was two years before I was finally diagnosed with CH and finally got help for it.
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joedell71
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #27 - Aug 7th, 2010 at 7:38am
 
Hi

Glad you found this board. I have been having these headaches since my early teens only recently having been diagnosed. I use imitrex and sometimes red bull or monster if I catch it early enough. You should definitely check out oxygen as it is much more cost effective than imitrex which I am trying to save for emergencies when I cant have oxygen. I really hope you can find a method of relief. as this malady is hard to live with sometimes keep your head up and try not to get to down about it because like every other trying thing in life this too will pass Smiley

Joe
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Jangly Mark
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #28 - Aug 10th, 2010 at 7:41am
 
MELATONIN?

The sumatriptan sort of works.
It does indeed kill (or almost kill) the CH ater about 15/20 minutes of taking it.

Two things, though...firstly, I am now getting multiple attacks per day.  Most are mild-medium.  Even when there is no headache, it seems that my nerves on that side of my head remain on the highest alert.  So, even being outside in a bit of wind cn trigger a mild CH.  These generally only last 20-25 minutes.

The sumatriptan only seem to be effective for 2-3 hours.  I can only take a max of 2 per day.  Apparantly, you're not supposed to take them for extended periods.  I'm already getting a fair bit of tingling in my hands/legs after taking the 4th shot in 5 days. 

I've been put on repeat prescription, but, told that there's really not a lot else I can have (and that inclodes O2) before Ive seen the neurologist.  I've been told to expect a 4 month wait for that.

So, once again, I'm looking for answers.

Reading around, I've seen whispers that Melatonin can help.

My usual sleep pattern (when not suffering) is to wake up at least twice in the night (at least once for the toilet).

Any advice would be greatly appreciated Smiley
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Kate in Oz
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #29 - Aug 10th, 2010 at 7:53am
 
Hi,

I've not actually used melatonin myself so can't help you there... but with the day time milder attacks - what I would call 'shadows' maybe I can...  During a cycle I get these pretty much all day every day and have found that exercise helps to get rid of or at least minimise the pain.  I often go and play footy with my son and before I know it the pain has eased.  Sometimes I even get stuck into cleaning up the house  Roll Eyes anything energetic seems to help...

Hope someone steps in soon with the melatonin advice.  Sorry to hear you're hurting!!!  4 months is a ridiculous amount of time to have to wait to see someone to prescribe 02!  Grrrr  Angry 

Keeping you in my thoughts and wishin you all the best,

Kate
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Jangly Mark
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #30 - Aug 10th, 2010 at 1:20pm
 
Kate in Oz wrote on Aug 10th, 2010 at 7:53am:
4 months is a ridiculous amount of time to have to wait to see someone to prescribe 02!  Grrrr  Angry 
Tell me about it Sad

Thanks for that, Kate Smiley

One thing I will say, though...I get shadows as well...and these are different from actual daytime headaches.  The shadows usually mean a tightening behind my left eyer/around my sinuses and sometimes sensations shooting (just for a second) through veins in the upper left side of my head and a horrible feeling on the side of my head where I get the pain.

What I am getting in the daytime is actual headaches...milder than my main night time one, but, still actual headaches.

Like the main one, they come on, reach a plateau quickly, then stay there before subsiding.  I've always had shadows, but, the extra attacks are something new.

Not sure if I've mentioned this before, but, when I'm out, I do find that wearing a tea cosy type hat makes a marked difference...I still get the milder attacks, but, less so from wind/draught.

With it being the summer, frankly, I look silly....and if I'm honest, I've had people openly laugh at me, but, a bit of laughter Vs less pain = the hat wins.

I'm not exactly thick skinned eithor...and I hate the laughter, but, when needs must...

As far as excercise goes, I'm really not sure on that...as I've mentioned before, warm (though not hot) helps, cold seems to make the CH worse.  Yesterday, I *just* missed the bus to work (my first bus was late), so, had to peg it a quarter of a mile to head off the second bus...my head was throbbing (but no headache) afterwards, and the sweat (without the hat this time) was pouring off me....whick cooled me down...at this point it brought on a mild attack.

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Re: 1s time poster.a few unusual things.hopng for tips
Reply #31 - Aug 10th, 2010 at 2:13pm
 
Hi Mark Smiley

I don't pretend to know anything for sure with this thing, I'm only just starting to learn about it myself.

One thing you said in your last post hits home with me though - wind and draughts seems to make mine worse too. We have a fan in our bedroom, on my side of the bed - it blows directly into my face. We haven't had it on for a while, but needed it a couple of days ago and bingo - I woke up just before 4am with a blinder (after taking sleeping tablets!).

Kept the fan off last night and didn't wake up once. I'm now wondering if the draught from the air-con at work is having the same effect, as the afternoon attacks have definitely been worse when I've been in the office and we've had the air-con on.

Good luck with your Neuro appointment and getting o2. I saw my doc today, he can't prescribe it either and told me I'd have to wait until I see my Neuro in a few weeks. Have since found out though that o2 isn't covered by our local health cover (we pay Social Security here, kinda like National insurance... Pay a fortune every payday yet don't seem to get a huge amount back from it). Did get the Imigran injections though (so even if I can't get o2 with our ''cover, I can silently smile at the £42.50 that every single injection dose costs).

Jen
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #32 - Aug 10th, 2010 at 2:35pm
 
One more suggestion until you can get in to see the doc.....a product called     4 way nasal spray     it was suggested to me by several of the people at the OUCH convention a couple years ago. Snort it up the affected side nostril, helped with heavier shodows. Only a couple bucks, non prescription, might be worth a shot.

Joe
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #33 - Aug 10th, 2010 at 6:13pm
 
Guiseppi wrote on Aug 10th, 2010 at 2:35pm:
One more suggestion until you can get in to see the doc.....a product called     4 way nasal spray     it was suggested to me by several of the people at the OUCH convention a couple years ago. Snort it up the affected side nostril, helped with heavier shodows. Only a couple bucks, non prescription, might be worth a shot.

Joe

You use that too Joe?   Grin  Me too, my dad taught me that trick!
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Re: 1s time poster.a few unusual things.hopng for tips
Reply #34 - Aug 10th, 2010 at 6:50pm
 
Mark~

Both happy and sad to see you here.  Sad that you are suffering, but happy that you found this site.  I have been one of the "lucky" few women sufferers for almost 15 years.  Started when I was 30 with the worst and biggest 10 you could imagine.  I thought I was losing my mind.  I was tested for everything from allergies to thyroid condition, to brain tumor.  I saw EN&T, neurology, allergy, radiology, etc. specialists.  They were shoving codiene at me like it was candy.  This was the worst thing the doctors could do as it was creating a rebound headache.  Finally, my GP returned from maternity leave, took one look at me, told me I was suffering from Cluster Headaches and to throw away the codiene. 

I suffer from Cluster headaches with a migraine component and my triggers range from humidity/climate changes to smells, to foods/drinks, to stress/lack of sleep.  I try to maintain a regular schedule and avoid my triggers: perfumes, colognes, tea, stress.  I was on oxygen therapy for a while and it was very helpful.  I also maintain well on water therapy.  The more hydrated the better.  For a 6 or above on the pain scale, I will go in for a torodol shot.  If it is below a 6, torodol won't help me, but if I get up there, generally the torodol will knock it out in about 20 minutes.  Take imitrex/maxalt, also, but it takes an hour and a half to work and messes with my stomach something awful. 

You mentioned hot helps you, well cold helps me.  I run the airconditioner in the car directly on my face.  It gets cold enough, it seems to numb some. 

You really should get in to a good neorologist for a proper diagnosis and keep charting your triggers.  Most doctors don't have a clue about Cluster Headaches, but if you get a good one, they will research it for you.  Mine did.  We learned a lot together, and even more through this website.  The people here are awesome!

I hope you find the right combination for you.
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