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Cluster Headache Help and Support >> Cluster Headache Specific >> Preventatives...
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Message started by Lefty on Mar 19th, 2010 at 12:40pm

Title: Preventatives...
Post by Lefty on Mar 19th, 2010 at 12:40pm
Whilst in full cycle I can normally take anything from 5 hits upwards, I'm wondering what change in frequency of attacks can I expect when on a preventative.

I have had discussions with my doctor but he is of the opinion that 02 alone is best as it isn't as heavy on the system as preventatives eg lithium. He is a great doc and very willing to learn, he's just not a great fan of dishing out prednisone and other heavy meds.

Any personal experiences would be very much appreciated.



Lefty

Title: Re: Preventatives...
Post by Bob_Johnson on Mar 19th, 2010 at 12:56pm
As you consider comments from individuals, keep in mind it will be data = 1 whereas when you look at good medical research/reports you are getting data covering hundreds or thousands of people.


http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=SIDE_EFFECTS___The_complexity_of_knowing.pdf (90 KB | 86 )

Title: Re: Preventatives...
Post by LasVegas on Mar 19th, 2010 at 1:28pm
If there is an underlying medical condition that would interfere with taking preventative meds, well then I understand. 

I guess an individual would have to weigh the consequences of side effects vs the opportunity to reduce the frequency of attacks and minimize the intensity of each attack and ability to shorten overall cycles. 

"To each his own", but I believe in the concept of "why suffer if you don't have to?"  Pred/Verap combo works for me!

Title: Re: Preventatives...
Post by Callico on Mar 19th, 2010 at 5:59pm
To me the meds I was put on a few years ago were worse than the disease.  Sure they knocked back some of the hits, but I was loggy and lethargic, almost depressed while on them.  I took myself off and started using Kudzu with as good or even better results than with Verap and Lithium, but without the bad side I experienced.  No two of us are the same though, so you will need to determine what is best for you.  The nice thing about Kudzu is that it is relatively inexpensive and you don't have to do a  lot of doctoring to use it.  If it doesn't work you aren't out all that much, and you can regulate your own dosage (within reason) if it does.  Sometimes I don't really think it is doing all that much for me, but then I forget to take a dose or two, or run out for a couple of days and I know if it is working or not!

Jerry

Title: Re: Preventatives...
Post by Lefty on Mar 21st, 2010 at 3:26pm
Thanks for the replys...I'm not anticipating my cycle to begin for another while( hopeful thinking I know) but I will definately have to have have some form of action ready to go once it begins.


Lefty

Title: Re: Preventatives...
Post by Kevin_M on Mar 21st, 2010 at 5:21pm

Lefty wrote on Mar 19th, 2010 at 12:40pm:
Whilst in full cycle I can normally take anything from 5 hits upwards, I'm wondering what change in frequency of attacks can I expect when on a preventative.

Any personal experiences would be very much appreciated.



The first couple times I used verapamil when episodic there were side effects like swollen feet, some tiredness.  I haven't had any bother from it since and it became more effective as I found the correct range to use, no hits most usually, stress level about ch basically nil and that helps.  It can seem side effects are more pronounced when introduced to a body until time acclimates to verap. 

On another side, it's been six years since being episodic anymore, I'm on it all the time at gradually varying levels, chronic hits without.  In that time though, the average level of year-round dosage has dropped.  Been quite a while since the high-level usage at peaks.

Just things to consider.     :)

Title: Re: Preventatives...
Post by neuropath on Mar 27th, 2010 at 2:16pm
I am with Bob on this one. It also applies to the view of one doctor in my opinion.

Title: Re: Preventatives...
Post by Guiseppi on Mar 27th, 2010 at 2:54pm
HOW you treat this condition is one of the most personal/intimate decision you get to make. I think of it as how I assert control over the beast.

I've obtained the best results using Lithium as my only prevent. Oxygen and energy drinks as my primary abort. (I say primary only because I keep Imitrex and Cafergot on hand...at month 3 of current cycle and haven't had to resort to either.)

For me, the lithium blocks about 70% of my hits, a HUGE reduction for me, as with no prevent I'm generally a 2 hit a day guy, 1 am and 1 pm.

Hoping he loses your address and you NEVER have to worry about it again!

Joe

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