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        New Message Board Archives >> 2004 Posts >> Frustrated!!!!!!!
        
(Message started by: BstnEagles on Apr 11^th, 2004, 4:24am)

Title: Frustrated!!!!!!!
Post by BstnEagles on Apr 11^th, 2004, 4:24am

:-[

Hey All,

I am becoming increadingly aggravated witht he headaches. As a chroic I feel like I can be doing something more to stop it. I find myself wondering when it will end and I will go back to normal and not to have to worry about this crap anymore. At 20 it is very frustrating to plan your day around whether or not you will be incompassitated for an hour or so and how to deal. Urgh!! Anyways, I was thinking about changng doctors/meds. The verapamil seems to be a waste of time at this point as it works sometimes and then will stop being effective for a few eeks etc... I see someone in Jamaica Plain who is not a neurologist but is invloved in the headache center there. I would like to see someone good who is knowledgable and who can help. Any suggestions?

Thanks

E

Title: Re: Frustrated!!!!!!!
Post by forgetfulnot on Apr 11^th, 2004, 4:30am

First and formosmost, what was the verepa..... dose and how many times a day?

Lee

Sorry folks but here in the central US it is 3:40 am and my pillow is calling me. Goodnight and see ya freeks tomarrow. Good Grief

Don't give up, one of us educated nuts will come to the rescue. Which one, luck of the draw, but someone will respond sooner or latter. Goodnight for now. Lee

Title: Re: Frustrated!!!!!!!
Post by jonny on Apr 11^th, 2004, 9:32am

Try mixing in some Lithium with that Verapamil, at least ask your Doc about it. Verapamil did nothing for me, Lithium did nothing for me, when I took both they stopped 80% of my HA's from coming and im chronic. This combo has been working for me for over a decade.

Dont know what kind of insurance you have but Dr Bill Mallaley @ harvard pilgrim in braintree knows his shit, that is a short drive for you, right off RT 3

..................................jonny

Title: Re: Frustrated!!!!!!!
Post by 5-string on Apr 11^th, 2004, 9:42am

Hey Jonny,
What's your lithium,verapamil dose?..just curious..I've never tried the litium part..
....Mark..

Title: Re: Frustrated!!!!!!!
Post by beasley on Apr 11^th, 2004, 10:03am

I second Jonny’s advice to add Lithium to the mix. I did have some success with Verapamil alone but it was not 100% effective. I changed Neurologist at the beginning of the year and the first thing he did was to add 900mg of Lithium. Ten day’s later I was consistently pain free for the first time in three years.

Jerry

Title: Re: Frustrated!!!!!!!
Post by jonny on Apr 11^th, 2004, 10:11am

480 Verap and 600 Lith has been rockin my world for over a decade......I would actually kill anyone that tried to take it from me, Thats how good it works for me.

...........................jonny

Title: Re: Frustrated!!!!!!!
Post by BstnEagles on Apr 11^th, 2004, 2:05pm

Maybe I will try the lithium although I dont know how it will react with my other medications.... Is there a net listing of good neuros in the area?

Thanks

Title: Re: Frustrated!!!!!!!
Post by Turts on Apr 11^th, 2004, 9:46pm

Gday BstnEagles,

Sounds like you have alot of advise about meds already, and better than I could provide anyway, however in response to your second question:

Go thru the OUCH website to the left. When on the OUCH website click the tab to the far left. I think it says Cluster Help. If you scroll down there is a listing of neuros that have been SUGGESTED by other CHers.

I hope this helps you find a neuro in your area.

Turts

Title: Re: Frustrated!!!!!!!
Post by Callico_Kid on Apr 12^th, 2004, 12:38am

I would second Jonny's recommendation of the Lithium. He put me on to it several months ago along with advise on how to modify an O2 tank and knocked back about 80 percent of my HAs. I still get them, but they are very much reduced so that the daytime ones I can work through. I'm also on 480mg Verap and 600mg Lithium. Give it a try first chance.

jc

Title: Re: Frustrated!!!!!!!
Post by bobkip on Apr 12^th, 2004, 3:02am

Good advvice but do check it out with your doc. Lith can be especially tricky when you first start it and your blood must be checked frequently at first 'til they get the dosage right.
Kip

Title: Re: Frustrated!!!!!!!
Post by Samantha_Smith on Apr 12^th, 2004, 12:25pm

Hello!

I'm up here in VT but my neuro is in Boston so here's my recomendation.

David Biondi D.O.
Pain and Headache Management
125 Nashua Street
Spaulding Rehab Hospital (right near The Fleet Center)
Boston, MA
(617) 573-2103

He rocks! I think the fact that I travel 4 hours one way in order to see him speaks for itself. Good luck! Please feel free to email me privately if you have any specific questions. I can't guarantee that he can help you but I can attest to how much he has helped me.

P.S. Are they really going to close down part of I-93 near The Fleet Center during the Democratic National Convention??? Holy cow!!! I'm glad I'm not going to be near Boston when that happens!!!