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BufNMark
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had appt with Neuro
« on: May 4th, 2005, 11:11am »
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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
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BufNMark
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Re: had appt with Neuro
« Reply #1 on: May 4th, 2005, 11:35am »
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im sorry correction 2 tablets a day 50 mg totaling 100 a day, Sorry
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E-Double
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Re: had appt with Neuro
« Reply #2 on: May 4th, 2005, 11:42am »
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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;a ction=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
« Last Edit: May 4th, 2005, 11:43am by E-Double » IP Logged

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Re: had appt with Neuro
« Reply #3 on: May 4th, 2005, 2:23pm »
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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 ?
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BobG
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Re: had appt with Neuro
« Reply #4 on: May 4th, 2005, 2:31pm »
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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.
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Re: had appt with Neuro
« Reply #5 on: May 4th, 2005, 4:54pm »
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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
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Re: had appt with Neuro
« Reply #6 on: May 4th, 2005, 5:41pm »
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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
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Re: had appt with Neuro
« Reply #7 on: May 5th, 2005, 8:27am »
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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! Smiley
 
be well,  
lionsound
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