Hi everyone.  My boyfriend of a year suffers from CH.  It's the most helpless feeling to watch him go through it.  As you can probably guess, I've found you because he's going through a very bad cycle.  Prednisone and verapamil always worked for him in the past, but over the past few months, it became less and less effective and now he's having K8-10s almost every night.  He's really scared and I'm scared for him.  I've been reading about the alternatives that other "clusterheads" here have used and we'll definitely try them, so thanks to all of you for that.

I do need some advice however, if anyone has some to offer: First, the meds.  He's been adjusting the dosage himself (I understand that's not a good idea) but his neurologist told him in the past that he could up the dose if necessary.  I think he was only talking about the verapamil.  How long would you need to take it at a higher dosage to tell if the change helped?  He also increased the dosage of prednisone (because the verapamil wasn't helping) and that really scares me.  He's got insomnia, his face is swelling, he's urinating frequently...all these I've read are side effects of pred.  So this is where we're at right now.  Can anyone help?  Do you think if he gets the doctor to regulate his meds that they'll start working again?  Any advice about what I can do to help him?

Thank you for being here.

Thanks for your response.  I'm not sure what he's on with the pred at the moment, but I do believe it's too much and it's been close to a month now.  Almost straight.  I know he took his regular dose and weaned off too soon because he was almost out, then he got some bad ones and went back on it, got a few more bad ones and increased the dose by I think 50% more, twice daily.  Tried weaning himself off and they got worse again so I think he upped it again.  Tried to wean off again and went back on.  I do think he understands now that he has to talk to a doctor ASAP.

As for the verapamil, he was taking 240mg a day and since that didn't seem to be working either he upped it to 360mg a day.

He's had these for 19 years now.  Only been prescribed these meds in something like the last 5.  At first they would give him relief for up to a year.  Before that he had nothing.  He has no abortive remedies in place atm.  Thanks to this website, we're finding out about lots of things he can try, but up til now, he's been somewhat in the dark about all this.  He got some melatonin today.  Gonna try that tonight.  Maybe he'll at least get some sleep.

He doesn't get any kind of dizziness like you describe, but just this past week he's been complaining of feeling like his heart is racing and his head feels "funny."  Yeah, not very helpful descriptions, but he says it's just nothing he's ever felt before.  He also suddenly has some sexual side effects.  We can't figure if that's from the meds or the stress of the headaches or something completely unrelated.  I can't seem to find any info to help with that.

Thanks again for your help.  I'm definitely going to keep coming back here to find more answers and advice.

Quote:


When a pred taper is over, yes, CH activity in all its fullness can hit hard.  A single taper is a gradual reduction, nothing I'd play with or decide for myself to alter from the regimen.  It's a set time used to work in a preventative, that being verapamil in this case.



Quote:


He's used verap before in five years' time, and it helped, however, I might be doubtful these same reactions occurred.  Playing with the pred taper and now these reactions. 


Quote:


Sounds right.

Since having CH, I've had doc appointments every 45 days.  So if needed, I up or lower the verap and call in to say so, he knows I'm very careful and gradual.  It's never far in the future when I visit and the date and time I called are in his notes, he examines me from there.  Happy when I'm able to successfully lower in previously approved increments, much more concerned and questioning when having increased, but knowing of the nature of CH.  EKG's and full blood tests when felt needed because he's interested in what may have changed, looking for something to identify coinciding with higher activity.   

This is a sort of special arrangement built on a long-term relationship and trust.    




Quote:


The preventative worked in during the initial pred taper was 240mg/dy of verap.  I can only mention personal experience.  That dose has not been able to handle this type of activity, perhaps worse now than previous cycles by tampering with the pred taper as you mentioned, although I wouldn't know of the effects doing this, it just doesn't sound like a wise choice or advisable.


Quote:
 
Joe said many good things and at this point an abortive is needed until this can be sorted out or corrected.  Importantly, see your neuro and give the exact story you related here, a decision is needed for the preventive med and, very hopefully, oxygen prescribed.


None of what I said is any medically educationed opinion.

Quote:

Prednisone works one of 2 ways for CHer's for a very small percentage, a pred taper will actually abort a cycle, neither your boyfriend or I are lucky enough to fall in that group. For us, the pred masks the CH while we are on it, but if you go off the pred with nothing else to block it, they come back with a pissed off vengeance!

Your Verapamil dosing is not that high relative to others, some go as high as 960 mg a day to get relief. That being said, DO NOT GO TO 960 MG'S!! As mentioned earlier, you go up with verapmil slowly while being regularly monitored to keep the blood pressure issues in check. The sexual side effects are common with Verapamil, we joke about it a bit around here, like the pain isn't bad enough you have to take THAT away from us too!

Time to start getting yourself educated. 32 years of this stuff and my best success has come from a 2 pronged approach, it does not cure them, but it makes life very manageable.

1: A good prevent med. You seem to have that with the Verapamil, although it's time to get back to the doc and adjust dosing up. As mentioned earlier, I use lithium. If upping the dosing doesn't help, talk to your doc about adding lithium, the combo has worked for some when either alone did not. A loving and caring smack upside his head, stop playing around with the pred as the long term harm can be pretty severe.

2: Abortives......this is what your boyfriend doesn't have and desperately needs. Oxygen should be his first line abortive. An attack starts, I huff pure oxygen for 6-10 minutes, the attack is gone, I am pain free. It's that effecient and that simple. Read the oxygen info link on the left and ask questions. What area are you in? Someone may be close by who can help.

Imitrex injectables work as fast as oxygen but are expensive and i hate how they make me feel. Some use the imitrex nasal inhalers which are much cheaper, I have never tried them.

You'll read that a lot of people are chugging energy drinks to abort or reduce hits. I use them too, as mentioned earlier, he should NOT until he gets this whole verapamil thing figured out as you shouldn't combine the taurine in the energy drinks with the verapamil.

A lot of info I know but you both have so much to learn. CH sucks. But with a little bit of work, you can keep beasty under control. Drag him onto the board so we can get to know him. We're a tight family and can't stand when one of our own is getting hit like this.

Joe

PS: One more thing. It's the weekend so I suspect he can't even call a doc until monday. Go to Rite Aid or Walgrens and get the following supplements:

Zing, Magnesium, and Calcium Citrate with Vitamin D. Take one of each, 4X daily, washed down with fresh lemonade. This alters your arterial PH making you less succeptible to attacks. It's a fairly new theory here but worked for me this last cycle when I hit a high peak and even oxygen started to fail me.

Is he seeing a headache specialist? Many neurologists lack the training and experience treating complex headache disorders.
======
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
====
Manipulating drug doses is not wise, especially with the Pred. Before he makes more changes, get with a knowing doc and look at his overall picture with fresh eyes.

coach_bill wrote on Aug 21^st, 2010 at 1:28pm:

Biting tongue till it bleeds here...preventing my fingers from doing anymore typing (sits on hands) 

Quote:


Sorry Coach it's all been replaced with MDF and uPVC 

God bless

Nigel

Please keep in close contact with his doc.  People adjusting powerful, potentially dangerous meds on their own give me the shivering willies....

Thanks for all the advice and info.  He saw the doctor today and she's got him weaning of the pred safely.  She also upped his dose of verapamil to 480mg/day and made him an appointment to see the neurologist so he can get that oxygen! Plus he's getting the internet again tomorrow so maybe you'll meet him here soon! LOL

Can someone tell me a little more about Imitrex?  I've heard about it but don't know much.  Somewhere on these boards someone mentioned keeping them available for when you are caught without the O2.  What's better, injectables or nasal spray?  What are the common side effects?  And is it safe to use with other drugs?

By the way, we live in Edmonton, Alberta, Canada.  If anyone out there is nearby, please PM me.