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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> question to ask
        
(Message started by: maffumatt on Mar 4^th, 2005, 10:16am)

Title: question to ask
Post by maffumatt on Mar 4^th, 2005, 10:16am

Title: Re: question to ask
Post by E-Double on Mar 4^th, 2005, 10:46am

BOTH!!!!!!!!!!!

and make sure the O2 is perscribed properly!!!

http://www.headachesupportgroups.com/oxygen/oxygen.htm

hang in there!!!

Title: Re: question to ask
Post by Purple_2005 on Mar 4^th, 2005, 1:44pm

I noticed with my preventive medicine
(Inderal LA 120 mg) it takes 2-3 weeks for it to actually start decreasing the frequency of my headaches. Usually, when it first starts working the headaches get shorter in duration before actually skipping days. I use the 20mg imitrex nasal spray and it works for me it's just that I have to take it everyday sometimes 2 a day. When taking imitrex that often sometimes the frequency of your headaches increase until the preventive medicine starts working. I hope you feel better.

Title: Re: question to ask
Post by Gator on Mar 4^th, 2005, 2:25pm

on 03/04/05 at 10:16:28, maffumatt wrote:

I just recently found a doctor who knows what I am going through, after several years of searching. I was so stunned that he wasnt telling me its all in my head or that I have a sinus infection that I didn't ask alot of the questions that I should have.

Congratulations. Sounds promising.

He gave me Verapamil 120 mg, I see that most of the other posts about this medicine show a much higher dose. Should I ask for a higher dose?

My personal opinion? Yes it seems a bit low, but give it a try where it is for a few more days. It takes about 5 days to reach peak concentration levels. The doc can always kick it up a notch. Why take more of any med than you have to?

He also gave me Imitrex 20 mg, so many other people say that the shots are better, should I ask for those or wait and see if it works in the nasal spray?

The nasal spray works for a lot of people. Give it a try. It's a lot easier to shoot a nasal spray during an attack than to load a syringe and give yourself an injection. If it doesn't fully abort your attacks, ask for a sample Stat Dose kit. You can try the injection for free before spending any money on it. Some people report their docs giving them bags full of samples. My docs were always too stingy to give me more than a couple.

He said if the Imitrex didn't help that he would perscribe O2. Should I have both?

THIS is the one thing I've never understood. Why do docs hold back O2? It is the perfect first line of defense. It's effective for 70% to 80% of clusterheads. It has almost no side efects. It's less expensive than most meds. Basically a no brainer and yet some docs won't give it. Tell you doc you want O2. Tell him to prescribe it as 10 - 15 liters per minute through a non-rebreathing mask for 10 - 15 minutes. You can try it at a lower rate at first, but it's nice to have some room to go up if necessary.

Is it normal for my scalp to crawl on the steriod shots that he gave me or is that a side effect of the other meds?

I never got that on any meds, even the prednisone, but then I got the pills - not the shot.

I took the meds as he perscribed and had one full day with no attacks, but the next day, today, I have had three since i tried to go to bed, all of them 10s, I normaly only get two or three that bad, normaly they stay around 7 or 8 . One good thing they only lasted about 45 min each instead of the normal two hours. Does this mean the meds are working for me or against me? How long does it take for the Verapamil to kick in? Been on it for three days now so does it take awhile to build up in your system? Any suggestions would be appreciated. Thanks
Matt

Again, all this is just my opinion. Others will have different experiences and opinons. Like I said above. It takes about 5 days for verap to reach peak concentrations levels. Give it a try for a few more days. Since you appear to be seeing some results at 120mg, kicking it up a little at a time may eventually provide better results.

The beast is a tricky bastage. He likes to screw with your head. He'll lay low and let you think something is working and then body slam you for kicks. He also mutates and adapts quickly in a lot of people. Good luck in your battles.

Title: Re: question to ask
Post by TonyG1 on Mar 6^th, 2005, 9:58am

Matt -- My Internal Med doc put me on Verelin PM 100mg (very low dose compared to others here) -- I noted that it took several days for my headaches to actually start getting better. Initially for me the pain levels dropped in the headaches I did get and they steadily decreased. Additionally, instead of a headache every day, they went to every other day. One thing I did note, normally, I'm textbook in terms of the timing of my headaches -- you literally can set your watch by them when I'm in cycle. The meds seem to have disrupted that and the time would frequently change. I've been PF (for the most part) with the exception of some shadows for a couple of weeks.

My doc gave me Imitrex 50mg tabs -- they work (I guess) BUT for me they are entirely toooooooo slow. I never knew if the headache had just run its course or the imitrex helped .... still don't know. I mentioned this to my doc as I wanted to know about faster abortives ... he hadn't a clue. This fact told me he knew the symptoms and diagnosis only from a textbook standpoint but knows NOTHING about the condition. He gave me a referral to a Neuro who specializes in headaches (thank goodness!!!)

Best of luck to you and wishing you many PFDANs!!

Tony