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
or
). 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.
Home
Pages: 1
New member looking for advice (Read 3330 times)
