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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> had appt with Neuro
        
(Message started by: BufNMark on May 4^th, 2005, 11:11am)

Title: had appt with Neuro
Post by BufNMark on May 4^th, 2005, 11:11am

I posted a few days ago about my husband We went to the Neroligist yesterday and he was a little slow to say for sure what Mark has becuase he said true CLUSTER headaches leave for a few years but Mark has had these headaches for 12 years and never gone more than 2 weeks id say with a headache some are not nearly bad but they are always on a on and off basis but recently they have gotten much worse , Anyway DR prescribed topamax? and told us to continue witrh imitrex injections and to call with 3 wks if Topamax was not helping he also mentioned O2 but becuz Mark (my husband) smokes he decided he didnt want to give it to him now, But the topamax is liek 1 the first week then 2 the 2nd week an 3 the third week and then we will be taking 2 100mg a day Just wondering if anyone had any info on topamax ? thanks again

Title: Re: had appt with Neuro
Post by BufNMark on May 4^th, 2005, 11:35am

im sorry correction 2 tablets a day 50 mg totaling 100 a day, Sorry

Title: Re: had appt with Neuro
Post by E-Double on May 4^th, 2005, 11:42am

Here are a few threads regarding Topamax.....you can also do a google search with clusterheadache.com & Topamax and it will give you more or use the "search" on this site.....

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1106351189

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1114452141

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1111208976

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1107869808

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1105669466

I did not tolerate it very well at all....some do....We are all different.
It is not a first line med for CH buit docs seem to perscribe it quite often......

This is a great resource to know like the back of your hand...print it out and give it to him

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

FIGHT FOR Oxygen...
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Educate your doc and/or find a CH familiar doc!

I'm a smoker....I just don't light up while sucking on my tank.
Wishing you the best !!
Best,
Eric

Title: Re: had appt with Neuro
Post by BufNMark on May 4^th, 2005, 2:23pm

my husband does Construction he works with saws and drills and machinery, the info you sent back scares me a little, How did it makeyou feel ? Some people almost sounding lost and confused ? That wouldnt be safe ?

Title: Re: had appt with Neuro
Post by BobG on May 4^th, 2005, 2:31pm

Just because your husband is a smoker is no reason to refuse him oxygen. Read the oxygen link that Eric posted. I don't think your neuro is very up-to-date on treatment for clusterheadaches.
And, there are ways to get O2 without a doctor's prescription. Welder's O2 is as good and safe as medical grade but the regulator must be adapted for use with Non-Rebreather masks.

Title: Re: had appt with Neuro
Post by E-Double on May 4^th, 2005, 4:54pm

Topamax for me.......

First came absent mindedness

Then disorientation

Then true forgetfulness

Then depression

Confusion and the fact that I could not function....couldn't think nor treat my clientele

I however am a person that will literally have the 1 in 5 million side-effect if there is one and I also metabolize meds rapidly.....feel effects quicker than average Joe...Go figure.

Best wishes

Title: Re: had appt with Neuro
Post by firebrix on May 4^th, 2005, 5:41pm

It's sad that the neuro did not prescribe O2 because your husband's a smoker. So many here who get real relief with O2 are smokers too. Looks a little like this neuro has a strong anti-smoking attitude, but that's no reason to deny your husband relief from pain with what has proved to be a safe and effective abortive.

This is where supporters can really help by advocating for their sufferers. Maybe you could get on the phone and stay on it 'til he GETS the O2 he needs? (Persistence is the key.....IMHO)

Otherwise maybe you could do as we did and just buy/rent your own tanks, masks etc?

Amazed he offered Topomax but not the effective and safe O2. Do we need to educate all these neuros or what?

Wishing you strength

Title: Re: had appt with Neuro
Post by lionsound on May 5^th, 2005, 8:27am

I would NOT wait the three weeks to call the neuro back....

due to all the reasons posted above and if you are started on a new med like topamax you should be checking in by phone with the doc after a week, and each of the first few weeks, to check on side effects.

you sound appropriately concerned for your husband...call that doc back! You can do it! :)

be well,
lionsound