Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello from a newbie
        
(Message started by: AndrewPT on Nov 1^st, 2006, 1:01pm)

Title: Hello from a newbie
Post by AndrewPT on Nov 1^st, 2006, 1:01pm

Wow! I never thought I'd find people like me! After speaking to professional doctors who don't seem to know anthing you kinda give up hope. Anyway, hi to everyone, my name's Andrew; have been suffering for four years, episodic, all without medication. Just started a new cycle which led me, in desperation, to your site. Have started on Verapimil for the first time. What can I expect? Will it stop my headaches completely or is that just wishful thinking? Also, I've been given Imigran, but wasn't shown how to use it! Only given two cartridges as well which seems a little silly. Do people use Imigran(injections) for every attack or only on the most servere?
Sorry for all the questions,
Hi again! Andrew x

Title: Re: Hello from a newbie
Post by LeLimey on Nov 1^st, 2006, 1:34pm

Hi Andrew its nice to meet you.
I'm originally from London BTW ;;D Was born and bred there.
Anyway.. what dose of verapamil are you on? Have you had an ECG?

Have the docs said anything to you about increasing dose at any point and has anyone suggested a prednisolone taper?

Alot of questions I know but in order to help they need to be asked!

Also did you know not to drink grapefruit juice or eat the fruit as it increases the effect of verapamil? No other citrus is a problem so you can glug OJ or whatever to your hearts content!

Verapamil can be quite constipating so if anyone says you're full of it now you can reply that you definitely are!
It will block the majority of HA's when you get to the effective dose for you but it has to be increased gradually hence the recommendation for a Pred taper. Prednisolone is a steroid and very effective against CH at doses of 80-100mg Being a steroid you shouldn't really be on it for more than about 3 weeks tops and 2 weeks of that should be tapering down again at 5mg less every 2-3 days. You start it at the full dose and it should stop hits within 24 hours. This gives you a pain break while the verap takes time to kick in and for you to be able to increase the dose gradually.

Imigran (or imitrex as you will see it referred to on this site) should never be injected above the waist. Its an auto injector so all you need to do is screw the pen bit onto the cartridge and pull it out of the container. It can be a bit stiff so don't push the button on the top while you're doing it!
Jab the whole pen thingy (technical term!) against your thigh hard enough to leave an "O" on your skin. Then push the button on the top and hold it for a count of about ten before removing and hey presto job done! Its only subcutaneous. It stings a bit but when you're getting hit you don't really notice THAT!
You may feel your heart racing or tingling in your arms or whatever. This is because Imigran is a vaso constrictor. When you get hit the blood vessels in your noggin swell by up to 20x their normal size so the only way to reduce the pain is by constricting them as fast as possible. The injections work in less than ten minutes as a rule.

Has anyone suggested using Oxygen to you or have you tried it?

Have you read about red bull and caffeine?

Lets get you some options here!

BTW, ask all the questions you want, we'll help all we can and the only stupid question is "Who's round is it?" - its yours! ;;D

Welcome to the boards!
Helen

Title: Re: Hello from a newbie
Post by davyp on Nov 1^st, 2006, 1:43pm

Hi Andrew,

The feeling you get when you find out that its not just you is fantastic but wait until you have your first face to face meeting with another clusterhead, there is no other feeling like it (well almost ;))

Lets start off with a few questions shall we ;;D
You say you are on verapamil but what dose have you been put on and are they the BP version or the SR.
verapamil will take a few weeks to get into your system so you may find that your cycle ends before the Vera does any good.
The imigran injections are fairly easy to use and most only use on the more severe attacks.
one of the best pieces of advice i could give to you is to check out the O2 links to the left and then speak to your GP about getting O2 as if it works for you it is absolutely great for aborting the beast. 2 cartridges is a bit silly as you could quite easily use that in a couple of days, my GP gives me 6 at a time and i had to really fight for it.
Have a good read of the links to the left as they contain some excellent info.
Here's hoping that you will have a very short cycle.

Dape

Title: Re: Hello from a newbie
Post by RichardN on Nov 1^st, 2006, 2:26pm

Hi Andrew and Welcome to Clusterville

Another vote for 02 here . . .it's my only abortive (have some arterie blockage and high cholesterol, so Imagran/Imitrex not an option for me) . . . but can kill the beast in minutes if used early-on in the attack.

You will need a script from your doc. Requires a 15 lpm regulator and non-rebreather mask (the one with the bag) or Clustermask. Works for 60-70% of us to abort . . . inexpensive, little or no side effects. If it works for you, save the Imagran for the hits the 02 doesn't reach.

Copy info off this board and take to your doc. Many do not recognize 02 as viable abortive, so you may very well have to educate your doc.

We have several Britishers here, and I'm sure they'll be along to give you numbers to call and info to help with the British system of health care.

Read, read, read . . . and ask all the questions you want. The answers/info/caring/sharing you will find on this board comes from people who truly know your pain.

Welcome Home,

Be Safe, PFDANs

Richard

Title: Re: Hello from a newbie
Post by RichardN on Nov 1^st, 2006, 2:29pm

. . .almost forgot (since I don't use the stuff) . . .check out the "imitrex tip" (three links above the yellow "OUCH" link . . . especially since you're limited on injectibles.

Richard

Title: Re: Hello from a newbie
Post by AndrewPT on Nov 1^st, 2006, 2:38pm

Thanks for all the info, is great to hear from people who have clearly had similar experiences to me. I have been advised to take 120mg of verapamil for 3 days, then double it for another 3, then treble it. Steroids and oxygen were both mentioned by my neurologist but suggested as alternatives to verapimil if that fails to work. What's the deal with red bull/caffeine?

Title: Re: Hello from a newbie
Post by davyp on Nov 1^st, 2006, 2:51pm

Hi Andrew,

Verapamil should not be increased with out first having an ECG and i dont think i have ever heard of anybody uping verapamil that quickly. Was it your neuro or your GP who suggested this?

Dape

Title: Re: Hello from a newbie
Post by RichardN on Nov 1^st, 2006, 3:29pm

Verapamil is a preventive . . . NOT an abortive. When I came here (2/02), don't remember what (low) dosage I started on, but had my first PF day a couple weeks later when I hit 240 mg (had three that night I aborted with the 02, but it was a GREAT day . . . first in a looong time) Got as high as 360 mg . . . many here take much more and some in combination with lithium and/or other meds.

Call back your neuro and request the script for 02. If necessary, copy info off this site and take to him. Oxygen IS a viable abortive for CH and NOT an alternative to Verapamil . . . . and this guy is a Neuro?

Richard

Title: Re: Hello from a newbie
Post by AndrewPT on Nov 1^st, 2006, 5:05pm

Had an ECG the day I met with the neurologist(first and only time so far). This is the amount he advised me to take.

Title: Re: Hello from a newbie
Post by LeLimey on Nov 1^st, 2006, 6:35pm

Hi Andrew,
Is he a headache specialist neuro do you know? The first neuro I saw wasn't and it DOES make a big difference!
Usual increments for increase of verapamil are about 80mg. I'm not saying he is wrong or that that's too high a rate, I'm not a doctor! Bear in mind it is a blood pressure med and it needs to be treated with respect. I don't think he would blame you for querying it as after all, we can all make mistakes.
You hsould have an ECG at every increase of verap by the way, not just one on commencing it.
We'll help you, its a lot to take in at once, I'm sure you feel swamped.

Red Bull or the cheaper equivalents can be a very useful option. It contains alot of caffeine which, like imigran and O2 is a vaso constrictor. Taurine enhances the effect, sort of like a turbo boost so if you neck a can of it as soon as you feel pain (or a couple of espresso equivalent coffees!) you can find it wipes it out. The trick is to use it asap, if you leave it too long it won't work AND to drink it as fast as possible. I don't know about you but I think red bull is vile and I hate it, I really REALLY hate it but I love the fact it works! I do shudder after drinking it though!

I hope that helps, you keep asking okay?!
Helen

Title: Re: Hello from a newbie
Post by BB on Nov 2^nd, 2006, 5:11am

There are other energy drinks that contain similar amount of caffeine and Taurine as Red Bull and the taste may be more palatable to you. In Australia, V drinks are pretty much the same as Red Bull in content and it tastes nicer.

But do try Oxygen, once you can abort an attack with oxygen you will feel so much better as you can use oxygen to abort as often as you need to and its cheap and safe compared to triptans. Its a great arsenal to have up your sleeve.

Welcome and painfree wishes to you.

Annette

Title: Re: Hello from a newbie
Post by Barak on Nov 2^nd, 2006, 8:32am

aww come on guys red bull tastes lovely:D its just an acquiered taste. but yes. i had to educate every doctor i went to about using oxygen and someitmes they dont like to listen because they think they are smarter than you so dont be afraid to be forceful and push for what you want and need. they dont understand what your going through. but give the enrgy drinks a shot they dont always work at first but dont give up on anything to fast. for mee it took red bull about three tries to work and now sometimes it works as well as the oxygen. keep your chin up!

Barak