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New member looking for advice (Read 2886 times)
Bardy
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New member looking for advice
May 8th, 2017 at 4:53pm
 
Hi all,

I've only recently found this site, and I'm hoping some of you can give me some advice.

I'm now in the fourth week of my latest attack, the 3rd/4th in the last two years. My first one went on for 8 weeks, then 6 weeks with a break of 2 weeks in between, so not sure if I count that one as 1 or 2. I saw a neurologist after the first one, but he didn't seem to know very much about cluster headaches and was actually searching for information on his computer while I was as there. He gave me a list of medication to try if they came back again, including steroids, epilim, verapamil and then the last line was sumatriptan injections, and was then sent back to my GP.

My main question is about the verapamil. My GP prescribed it and I took it for the first two weeks but it didn't help, so she then told me to stop taking them and start a course of epilim which I've taken for 12 days, which again hasn't helped. Can anyone give me advice on how long I should be taking the verapamil for and what sort of doses usually help? My GP is very good but I'm the only patient she's had with cluster headaches so doesn't have any experience with them, but from what I've read it doesn't seem to be as simple as just taking verapamil for a couple of weeks at a constant dosage.

Any advice would be greatly appreciated. I don't want to sound dramatic, but I'm getting 6 or 7 a day now, and honestly feel like I'm losing my mind.

Many thanks in advance.
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Peter510
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Re: New member looking for advice
Reply #1 - May 8th, 2017 at 5:23pm
 
Welcome Brady,

Sorry you had to find us but glad you did. There's loads of advice and support here, so keep posting.

Your story is familiar to many of us. In fact the average time it takes to get a diagnosis is around 10 years, so you're well ahead on that score.

I can't answer your query on Verap, but there are many here who will. The reason I've never used it is due to the following:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

It has made a significant difference to over 80% of those of us using it.

Read the link, ask questions and discuss with your GP. It's a very healthy and effective preventative.

Incidentally, where in the world are you?

Regards,

Peter.
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jon019
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Re: New member looking for advice
Reply #2 - May 8th, 2017 at 7:54pm
 
Hi Bardy....welcome aboard......

First I'd ask the doc for an Oxygen script.....read the oxygen info link to left of screen...the first time a hit fades like water down a drain...after O2...you WILL cry...JOYOUS tears!!!

I'd also maybe before that look for a new doc...seems like she is throwing stuff at the problem
and hoping something sticks. Been there...done that...used to see my PCP scurry away to dusty
med books and give me a "migraine" med....there has GOTTA be a PLAN.

Agree with Peter on the D3 regimen...minimal side effects...inexpensive...wide success rate....

Typical for verapamil therapy is to start with a prednisone or methyl prednisolone taper while at the same time ramping up verapamil dosage. Typical sweet spot" for verap for clusterheads is 480 mg/dy in divided doses. Personally I was up and over 1000mg/dy in high cycle. More reported success with immediate release vs extended. Wise to have an initial ECG to determine baseline and any time you up dosage (per DOCS permission btw) as verap can affect heart rhythm.

No familiarity with epilim tho I have seen reports of some success....

When, in all Likelihood, she next wants to try Topamax....come back here and enter it into search function....you'll be glad you did.....some very nasty side effects...

Best

Jon
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« Last Edit: May 8th, 2017 at 8:19pm by jon019 »  

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Esheel31
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Re: New member looking for advice
Reply #3 - May 8th, 2017 at 8:33pm
 
You need to find a headache specialist.
Not all neurologists specialize in headaches.
I had some success with a verapamil/lithium taper.
Batch's D3 regimen does work wonders for some of us.
As for abortive you can't go wrong with oxygen.
Sumatriptan injections are the next best,but so expensive.
There is a link up to the left that will show you how to split them.
You really need a headache specialist.
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Mike NZ
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Oxygen rocks! D3 too!


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Re: New member looking for advice
Reply #4 - May 9th, 2017 at 5:17pm
 
Hi Bardy and welcome

Verapamil is the standard preventive that most of us will have been given at some point. A typical effective dose for most people is 360-480mg a day, but lower works for some and some need to go to around 1000mg a day.

It takes about 10 days for a dose level to become effective, so just waiting two weeks isn't really enough time, especially if you started on a low dose. Verapamil is primarily a blood pressure medication, so I'd not be at all surprised if your GP gave you a dose that corresponds to treating blood pressure. For some unknown reason, it seems that most people (but not all) with CH can tolerate higher doses of verapamil than someone with just high blood pressure.

When taking verapamil, especially at higher dose levels, it can impact the PR interval on an ECG, which is part of the cycle the heart uses to beat. To detect this it is normal to have an ECG periodically and if it is impacted then normally stopping the verapamil will be enough to restore it to normal.

Verapamil comes in two forms, instant release and sustained release, which controls how fast the medication is released into your body. Some people find that one form works better for them.

Dose timing is also important. It takes a few hours from taking it to it getting to peak concentration in your blood. So it is common to split the daily dose into several doses, e.g. if taking 360mg a day then 3 doses of 120mg. However it doesn't have to be equally divided, e.g. if you tend to get most of your CH overnight then the split could be changed so you take more at night and less in the morning.

With your "6 or 7" a day, it may be that equal dose splitting will be best.

What normally works well is to experiment, working with your doctor, seeing what combination of dose / release type / timing works best for you, but waiting long enough to give it chance to work.

As you can see this isn't exactly simple and it will be beyond the skill level of your GP (no surprise as even most neurologists just don't have the skill and experience to treat CH). This is why we always suggest that people work with a headache specialist.

And you're not at all dramatic by saying that CH can make you feel like you're losing your mind. Here we all know what it is like as we either have it or support someone with it.

What really makes a difference is getting an effective preventive and abortive. Once you cut down how many CH you get and can kill off the rest quick, it makes a huge change.

Others have mentioned using vitamin D3. This has been incredibly successful for many, including myself, having gone over 5 years CH free with it. Do read up on it and give it a go.

For abortives, oxygen is amazing and we've an info page (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register). It is important to get a high flow rate and the non-rebreather mask for it to be effective. Jon is right that the first time you use it the result is tears of joy, it happened for me and my supporter as we knew what difference it would make. The result can be killing your CH off in a few minutes and you can do it multiple times per day.

Sumatriptan injections (brand names imitrex / imigran) or the nasal spray can work great too, again killing off CHs in a few min, but you are limited to 2 per day.

Also keep reading here, there is so much to learn. Ask all the questions you have.
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Esheel31
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Re: New member looking for advice
Reply #5 - May 9th, 2017 at 10:03pm
 
Well said Mike.
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LasVegas
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Re: New member looking for advice
Reply #6 - May 21st, 2017 at 10:58pm
 
Hi Bardy,
You've been provided excellent Verapamil and other advice here.

Curious to know where you are residing? Chances are I have a recommended doctor's name to give to you for help. Let us know...

-Gregg in Las Vegas
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Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019
 
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Payg
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Re: New member looking for advice
Reply #7 - May 22nd, 2017 at 2:08pm
 
Hi Bardy & Welcome!
I too started out on Verapamil at 80 mgs (3 times per day)and it took about two weeks for it to be effective.  Then after a month, it stopped working so well and my neuro suggested we up the dosage to 120 mgs (3 times per day).  The new dosage took about 2 weeks to kick in as well.  And so far so good.  It has reduced the number of attacks (now down to 1 every 10-14 days)and intensity of each attack from severe to mild.  I take mine at 7 a.m., 2 p.m. and as late as possible (usually by 10 p.m.) since all my attacks have been around 2-4 a.m. 

The 02 advice is excellent and can make a world of difference, so I also highly recommend using 02.  I have a high flow regulator and a non re-breather mask.  I've found that actually going into your local medical supply store with the Rx in hand and talking to the folks there can really help.  It seems they get a better understanding of what you're needing and are more than willing to help out.  After my husband talked to the folks in our local store, he came home with an additional tank as a "back up" just in case I was close to running out on the weekend.  The extra assurance was well worth an extra $15.

As all have mentioned here...keep reading and educating yourself.  Mike Z told me, "you'll soon know more than your doctor about CH and how to treat it".  Sounds crazy, but it's true!   Smiley

Keep us posted.  Wishing you the best,
Payg
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