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LeanOnMe

Newbie needs help for hubby

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Hello all, my husband experienced his first CH 6 days ago. He is 40. It's been a scary week! We've been to his pcp (Imatrex prescription) the ER and finally found this site. He is too concerned about the heart related side effects to take the imatrex so he's been taking excedrine migraine to abort along with deep breathing and tightening of all muscles. He gets them at night with residual headache throughout the day. My question is what is our next move? The pcp is worthless and won't refer us to a neurologists or give rx for oxygen. Ugh! I'm a bit frustrated.

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Since you know that oxygen is essential, you need to figure out a way to get it.  Welding oxygen is an option, but I don't think you can give up yet on getting it through the medical system.  You can ask his PCP to look up the standard treatments for CH in any reference book or app s/he uses.  Did the PCP give a reason for being so limiting?

 

You can significantly reduce the amount of Imitrex he gets with each injection (and it will still stop his attacks): https://clusterbusters.org/forums/topic/2446-extending-imitrex/

Vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Melatonin at night: 10mg and more as needed

Drink down an energy shot (such as 5-Hour Energy) or energy drink (Monster, Red Bull) at the first sign of an attack (this will probably work better than the method he's now using)

Putting the feet in very hot water when an attack starts seems to help a lot of people

As far as pharma goes, it's completely standard to prescribe verapamil as a preventive along with imitrex as an abortive.  I guess if hubby's worried aboiut his heart he might nix this, too.

Look over the list of possible triggers here: https://clusterbusters.org/forums/topic/4562-next-triggers-draft/

He's a great candidate for busting (because he's not using anything that would block busting). Read about that in the numbered files in the ClusterBuster Files section of this board.

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LeanOnMe, CHFather is amazing and his advice is fantastic, so I encourage you to enthusiastically pursue his suggestions. I'm also the wife of a Clusterhead, and would be happy to talk with you about the experience and the steps that can be taken.

This community is wonderful, and their knowledge is invaluable. I will say that Excedrin Migraine is most likely not going to help, and that Imitrex will. Also, you can definitely press hard to get an oxygen Rx--I've found that the more information we have, the more inclined the doctors are to listen to us. Regardless, best of luck to you and your partner.

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LeanOnMe,

 

Does he have a diagnosis from the doc of having CH?  If so, and the doc won't prescribe Oxygen, or refer him to a neurologist  then I'd get another doctor.  That one is worthless.  100% high flow oxygen works the vast majority of the time to stop the attacks.  The doc should be smart enough to open his Merck manual, where 100% high flow oxygen is mentioned not once, but repeatedly throughout the CH treatment description. 

 

Some doctors did graduate, but NOT the top of their class, sorry to see you drew the short straw with that doc (I guess someone has to graduate with D's  ;).  Sadly it's somewhat common for some doctors to think they're smarter than the collective knowledge contained in the Merck manual.

 

J

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I agree with HurtsMyHead. O2 is such a well known treatment for cluster sufferers that for your PCP not to prescribe it (unless there is a very specific reason not to) calls into question his/her knowledge about the condition and any other recommended treatment. Find someone who is comfortable with the condition and can refer you to a specialist.

(Long shot but...any chance you're in New England area of US? Is so I can recommend a great neurologist in the MA area. )

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Hello all, my husband experienced his first CH 6 days ago. He is 40. It's been a scary week! We've been to his pcp (Imatrex prescription) the ER and finally found this site. He is too concerned about the heart related side effects to take the imatrex so he's been taking excedrine migraine to abort along with deep breathing and tightening of all muscles. He gets them at night with residual headache throughout the day. My question is what is our next move? The pcp is worthless and won't refer us to a neurologists or give rx for oxygen. Ugh! I'm a bit frustrated.

 I was wondering , if you could figure out what caused the first headache. Sometimes it may just be bad tension headache or intense migraine. 

New food? Did you change anything in your house? Any new product?

New re-freshener,new dish soap, new spices, new brand of milk?  new water filter ? even new pair of shoes.

 

Anything stress related? Dentist visit?  

 

I would think very hard , as you may still be able to figure out the trigger for this first headache. 

If you didnt change anything at, least you know at has nothing to do with anything external.

 

This is one of the most important things you can do now.

Other is ,get a new PCP  , convince him/her that you have CH a get oxygen . Most insurances pay for it. If  you have high deductible. You end up paying probably around $100/month.

 

Oxygen comes in bottle for portable use and concentrator for home use.

Portable oxygen has a regulator up to 15L/m

Home concentrator has ussually flow up tp 10L/m

Your script will be probably 12-15L/m

You medical supply will bring you 2 concentrators as required by your script to get 10L + 2L from the second one  and charge you for 2 concentrators. 

They will also bring you portable oxygen free of charge .

Insead of paying for 2 concentrators , what you can do is get 1 concentrator and use 2L/m from a bottle with a splitter.

But every medical supply company is diferent. This was just my case.You will need to find out about their billing practises first. 

But if you find out that they want to send you 2 oncentrators  and charge you double , you can get a new script for 10L/m and just use 2L from portable.

good luck.

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john', this is generally very good advice, but the O2 supplier should NOT be giving you (or anyone) a concentrator for home use.  They should be giving large oxygen cylinders (M, H, or MM size).  Cylinders contain 100% oxygen; concentrators provide about 92% oxygen.  There is a big difference in effectiveness.  Your aborts using the concentrator (reported in your other post) are taking at least twice as long as they should. (I know from your other post that your situation regarding effectiveness is presently kind of bizarre, but I have never seen another person report better results from a concentrator than from tanks, and there has to be an explanation for that related to the equipment.)

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