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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Going to the Doc, need advice
        
(Message started by: april.s on Jun 6^th, 2004, 3:16pm)

Title: Going to the Doc, need advice
Post by april.s on Jun 6^th, 2004, 3:16pm

I have suffered with CH since I was 17 and the last three years they have gotten progressively worse. I usually get them in the spring and sometimes the fall. I am finally going to see my PCP this week (have been haveing an episode for over 2 wks now). Any advice on what medicines do and do not help as well as how to get the point across to the doc would be greatly appreciated. I went to see a doctor about a year and a half ago and he did nothing to help, don't want a repeat of that this time.

Title: Re: Going to the Doc, need advice
Post by UN_SOLVED on Jun 6^th, 2004, 3:38pm

(1) Find a neuro who knows CH.

What meds work for some, won't do anything for others.
Many use 0² and Imitrex. See THIS (http://www.clusterheadaches.com/about.html#TREATMENT) for a list of commonly used meds.

Goodluck

Michael

Title: Re: Going to the Doc, need advice
Post by mynm156 on Jun 6^th, 2004, 3:42pm

If you have to start with PCP then just make sure you let him know what you have and that something like Imitrex or Zomig NS these are to abort and then Prednisone, or God Forbig Topamax might help you preventively. Look at the OUCH website for help.

mynm156

Title: Re: Going to the Doc, need advice
Post by Bob_Johnson on Jun 6^th, 2004, 4:37pm

Click on "medication survey" on the left: it will give you some idea of both what our folks use and the relative success.

Explore, also, www.headachedrugs.com, putting "cluster headache" in the search box. Good site run by a doc who runs a headache clinic.

If you have not been under medical care for several years, it would be helpful to catch up on the important developments in cluster treatment. Consider either the second or third title.

HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: Going to the Doc, need advice
Post by Gator on Jun 7^th, 2004, 9:13pm

Welcome to Clusterville. The very best advice I can give to anyone is to get onto the site and read, read, read. Read everything on this site and the OUCH website. There are links on the left side of the screen that take you just about everywhere. The best way to help your doctor help you is to be informed.

Title: Re: Going to the Doc, need advice
Post by april.s on Jun 11^th, 2004, 12:12am

Just wanted to say thanks for the advice guys. I went to see my new PCP on Monday and she actually knew a little about CH! She gave me a sample of Imitrex spray (20 mg) and a Rx for Verapamil. She told me to try the sample next time I had an attack and call her if it worked. I woke up with another big one Tuesday and I can't believe it but it worked! Within 10 minutes the severe stabbing pain had turned to a dull throb and by the time the Verapamil got into my system I was pain free. I called my Doctor back and she called in a Rx for the Imitrex but when I went to pick them up I found out the Rx is for 100 mg tablets. Will this work as well? and why the difference in the mgs?

Title: Re: Going to the Doc, need advice
Post by Rock_Lobster on Jun 11^th, 2004, 12:25am

General thoughts on the Trex... condensed from 1000 other posts here + my own thoughts...

The mg difference is due to the type of absorbtion. Gut == least efficient. Nasal == better. Injection == best.

Tablets suck. They take too long to work. My experience == 15-25 minutes, with an 80% success rate (it took that long (agony) before I knew if I had to pop another). No professional clusterhead takes tablets.

Nasal rocks. Lots of clusterheads swear by nasal. I tried it, I like it, but I do not use it because you cannot control the dosage. For me nasal takes 5-7 minutes to do the trick... just a hair longer than injection. Did not use them enough to judge the success rate.

Injections rock. Not talking about the autoinjectors here... talking about vials and syringes. Reasons:
1 - fast... takes 3-5 minutes to be PF.
2 - control... 1 'dose' is actually 4 doses for me. This is especially important once you learn that your insurance does not like paying for triptans like Trex. I use .125-.150ml, which is about 1/4 of a vial.
Success rate is 90%+ at that dosage, and it is that low because I take such a low dose. I know in 5 minutes if I need to followup with another .075-.100ml, which has never failed me.

Have fun!
Wrokk

Title: Re: Going to the Doc, need advice
Post by april.s on Jun 11^th, 2004, 12:46am

yeah, I was a little disappointed when the pharmacy told me she called in pills. Unless you suffer from these things you don't realise how long one minute of pain can be. Even waiting the ten minutes the other day seemed like an eternity. I don't know if she was trying to provide me with the more economical route or what. I also have insurance through an HMO and that may have something to do with it. Money is not an issue when it comes to this though, I am just sick of suffering.

Title: Re: Going to the Doc, need advice
Post by Rock_Lobster on Jun 11^th, 2004, 1:35am

I get the impression that some docs do not realize how long it takes for some meds to work (ie trex injections vs nasal vs tablets), nor how fast a cluster can make one say 'shit shit shit shit shit....'.

Trex is expensive. For HMOs the limits on Trex are pretty tight. If memory serves my HMO limits are (and prices were I to pay out of pocket):
100mg tablets - 18 per month - $280
20mg Nasal - 12 per month - $280
6mg Vial - 16 per month - $800

You can see why I prefer the vials... with my low dosing, those would last me through 64 headaches... I get nowhere near that many.

Nite nite,
Lobster

Title: Re: Going to the Doc, need advice
Post by don on Jun 11^th, 2004, 8:53am

Print out all that you can and lug it all to the appointment.

There is nothing more intimidating to an under-educated or egotistical Doc than an educated patient.

Title: Re: Going to the Doc, need advice
Post by Kevin_M on Jun 11^th, 2004, 9:33am

If the 20mg nasal spray worked for you but she gave you a script for the tablets, it would probably be for the implication stated above by Lobster. She was able to prescribe you more of them.
However, call and relate to your doctor the success you had with the nasal spray and that the tablets are MUCH less effective. Maybe she can prescribe the nasal spray too, or next time just prescribe the nasal or the injections.
Go for quantity, get as many as can be prescribed, and keep working with adjusting the verapamil to the prevent dosage that works best. Your doc did not do too bad at that first appointment for clusters but the tablets may need to be stepped up with the addition of one of the other forms of imitrex too.
When talking with your doc again, exaggerate the time the tablets took to work to twenty minutes, this is not
uncommon and may soon become your situation. Other than that, stay honest with your doc.
The verap will not actually be kicking in for a while yet to help and needs to be tapered up to your best
preventive level, that can take time too.
This cycle has been only a little over two weeks, this may be in your lap for some time longer. Your med regimen just started and needs to be worked with some. Get as prepared as possible and stay in touch with your doctor, giving her/him feedback and making finer adjustments. Let us know, good luck and welcome.

Kevin M

*edit* As for the difference in mg for the different forms, I guess it has something to do with, the more direct way you are able to take it, such as injection more direct than nasal and nasal more direct than tablet, the less mg of each form is needed.