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Message started by cathybt on Feb 22nd, 2017 at 12:37pm

Title: Chronic clusters
Post by cathybt on Feb 22nd, 2017 at 12:37pm
Hi everyone:
I am here because I am DESPERATE!  For the last 3 weeks, I have been getting nightly CH's, they hit the minute I get to sleep (am exhausted) and are so excruciatingly painful, I have to get up, get ice, Red Bull and wait out the 20-30 minutes it takes for them to subside.  If I go back to bed and try to sleep, within an hour, another one hits!  I am ready to give up!  I see my doctor in 2 days and will be begging him for something to take this horrendous pain away.  I have tried melatonin, Benadryl, all kinds of OTC items incuding turmeric curcumin, feverfew, D3, magnesium, etc, etc.  I am in grave danger of losing my job.  This illness has to be the WORST!  This beast seems to morph no matter what I try to do, robs my sleep every single night and leaves me so sick all day, I cannot even live my life!  I think I would be better off not even here if this is what life is all about.  But I cannot go on like this much longer.  The pain is so bad, I just want to die and I would give my right arm to be able to sleep for even a few hours without getting another attack!  This is truly a curse.  Does anyone have any advice for me.  By the way, I have had CH for over 20 years, but it was episodic.  Now it seems to be chronic, hits every single night.  I cannot take Imitrex or a triptan anymore cuz I have high blood pressure and scared of what it would do to my heart.  Please help!
:'(

Title: Re: Chronic clusters
Post by Peter510 on Feb 22nd, 2017 at 2:16pm
Cathy,

Sorry to hear you're having such a rough time. 

You need to insist on a home prescription Oxygen from your Doctor.

Have you ever been on Verapamil, which is widely and successfully used for CH and also lowers blood pressure.

In what part of the world do you live ?

Hang in there.

Peter.

Title: Re: Chronic clusters
Post by LasVegas on Feb 22nd, 2017 at 2:43pm
Hi Cathy,
You are not alone and have brought your desperation to the best place available worldwide. There truly is no better resource on CH's than right here, this website.

Yes, I agree with Peter on the O2 and Verapamil recommendations.

You state you've tried D3, Magnesium, have you tried the entire vitamin regimen and taken all of those vitamins as Batch has recommended? I highly recommend you consider this D3 vitamin regimen that has helped so many of us CH'ers rid our nightly pains.

Are you familiar with the 'letter to employer'? Maybe this can help your work situation by sharing this letter.

You mentioned 20 years episodic and now you believe chronic. What has changed your thoughts to think you are now chronic?


Have you identified your triggers?
Do you have anybody at home to be a supporter?
Have you been prescribed any meds this cycle?
What helps you abort an attack?
Where do you reside?

Two days until you see your doctor might seem like a long time, but it's really not and suggest you use these two days to gather as much info for your doctor appointment so that you can best be productive at that appointment.

We here on this site truly understand your pain and your frustrations. You are not alone in the respect that we can help you get on track by answering questions, asking questions, sharing with us more about your situation, and doing lots of self reading.

-Gregg in Las Vegas

Title: Re: Chronic clusters
Post by Peter510 on Feb 22nd, 2017 at 3:19pm
Cathy,

Here is the letter to employers that Gregg refers to:

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

Link to D3 info to bring to your Doctor appointment to follow.

Peter.

Title: Re: Chronic clusters
Post by Peter510 on Feb 22nd, 2017 at 3:23pm
And the D3 regimen. Read through it. Print and bring it to your appointment.

80% of those of us using it are benefiting in a very real way, myself included and I turned chronic a little over 3 years ago after 12 years episodic.

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

Peter.

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