hi im charlotte + my hubby is suffering sooo much im at my wits end as to what to do its been almost 3 years since they started & 1month ago he was finally diagnosed with clusters... he had anaphalactic shock to the triptan's so last w/e not only was he having an attack but when i injected him i nearly killed him. please i need some advice from fellow sufferers as to what i can do to help him thru this

I'm so sorry you all are going through this.....it's tough.

First question......does he use oxygen to abort the attacks?

Jackie

Charlotte,  


  To the left of here is a link "OXYGEN INFO"  it's in yellow.  Oxygen is cheap, safe and it works for over 70% of us to abort a headache.  Please read all of it and print out the pertinent info. and take it to his Dr. as he will need a precription for it from him.

   There are other abortive and preventative drugs that he can take besides the Triptans.  Here is just a partial list.

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Besides remaining calm there are things you can do to help him.  Ice packs to the affected side,   energy drinks (like Rock Star or Red Bull) containing Taurine and caffeine, as well as strong coffee.  Some swear by heat packs instead of cold but most like the constricting properties of cold better.  While he's waiting to get 02...he can sit in front of a fan or air conditioning vent and breathe deeply..almost to the point of hyperventilating.

Us sufferers wouldn't be able to make it if it weren't for our supporters.  You're taking the first step by trying to research things when I'll bet he can't right now.   keep up the good work.

Ask any questions here,  that you want.  None of us are doctors, but all together we have thousands of years of experience in dealing with them.


Linda

hi linda thankyou so much for ur reply im in the uk and Rx's are free over here so money is not an issue... The doctors wont give him o2 because he smokes. yes the simple thing to do would be to stop but he also suffers from paranoid skitzophrenia . The only way he can deal with this is to smoke! he's been used as a guinnea pig for 16 yrs b4 i met & married him so im having a real hard time even getting him to try different meds... this is so frustrating i just want my easy going hubby back. if i could take the pain i would! but anyway thanks for ur caring thoughts.. last week in the ambulance they gave him o2 i dont know what the concentration of it was but he went into yet another attack could the o2 have caused this?  

Hi there worriedwife.  Linda and Jackie are two of the best supporters out there.  They really know their stuff.  They've helped me through a lot of hard times.

In regards to the O2, lie and tell them he doesn't smoke.  I normally wouldn't tell someone to lie, but the O2 helps so many.

You are on right track by being here to find ways to help your sweetie.  Keep up the good work and if you need us we're always here.

[quote]could the o2 have caused this? /quote]


Absolutely not.

Almost everyone here who uses 02...smokes.  We are adults.  We know NOT  smoke when using oxygen.  While I realize getting 02 prescribed in the UK is different than it is across the pond, you might want to ask that Dr. if you should cement up your fire-place and throw out all candles, matches, lighters, and gas stoves while you're at it.   ::)

Yeah....you bet.  Lie.  When I get my welders 02 bottle filled I have been asked once or twice what i'm using it for and I told them.  Hydroponics.

I did not feel one little bit guilty for lying.   ;)

As Linda pointed out, the 02 in the ambulance and the attack were just a coincidence.  It is unlikely they gave him a high enough of a concentration to do anything: to abort a CH attack, the 02 must be delivered at 15 lpm (litres per minute) or more.

There are MANY drugs that can be used to treat cluster headaches.  Some work for some, some don't, which is why you just have to find a good neurologist to work with.  In fact, some antidepressants and some antipsychotics sometimes help those with clusters (lithium and/or zyprexa being examples), so they may help with his ps!

Other drugs are also used as "front line treatments" for CH.  These include some anti-epileptics (depakote, topomax, neurontin/gabapentin) and/or calcium channel blockers, like verapamil.  These all have their own potential side effects, so it's often a trade-off, but there are many things out there to try other than the triptans.

As a supporter, I found that learning as much as I could about the disease and potential treatments makes me feel like I'm doing something - and other than staying out of his way when he's getting hit is really the only other alternative.  The hardest part about being a supporter is feeling so helpless and so useless.

This site is EXTREMELY empowering!  Read, read, read, read, and ask, ask, ask, ask!

We're here for help, for hugs, for support, and for encouragement.

Laurie