Holy good Dr. appointment

So I went in today and saw my NP. I walked out happier. I have a script of stadol, fioricet w/ codiene, relpax, mediol steriod pack(?), oxygen tank and acupuncture. Holy cow. She said that I was the most difficult case she's ever seen and she is not scared to treat me with whatever she can. She wants me to see a headache specialist, so I told her I had an appointment with one this upcoming month since it was recommended.

She also said that I should up my dose of topamax.

She fired that nasty receptionist, too. YIPEE! She said she was deeply sorry that I had to deal with her while I was in severe pain and if it ever happens again DEMAND to talk to her personally until I get through to her. If I cannot get through to her through phone, do not be scared to come to the office and she will see me.

She told me to try acuptuncture first and if that does not work, we will talk about botox or trigger point injections. She was happy that I am doing as much research as I am, I think I suprised her with my vast knowledge on the subject of migraines. I even suprised her with some questions...I squeezed out an "I don't know" from a doctor!! HOLY COW! First time for everything, I guess

That's Amazing LG Im sooo glad you are in good hands with your GP. You deserve it!

One thing my neuro told me is not to try more than one new thing (medication or alternative treatment) at a time and to give each new thing a good while before changing, stopping it, starting it etc., otherwise you will never know what works and what doesn't. A new thing includes changing dose as well as changing medication or starting a new type of treatment therapy. He is the head of the headache clinic at a university teaching hospital and has 1500 headache patients and is a migraineur himself. I am his most difficult case (so he says, I bet I am not).

Keep this in mind with your new arsenal. As far as Topamax goes he told me the most effective dose for migraine seems to be either 125mg or 350 to 400mg. The reason why patients respond at different doses seems to be genetic predispositions. Slow titration of 25mg increases every 2 weeks can help the body adjust to the side effects of the higher doses which not everybody gets and many people adjust to. I am not promoting Topamax I am only repeating what he wrote me in an email and what he gave me when I started the drug.

Soo glad your doctor appt went well. It is great when you have a good rapport with the dr. I agree with bawddog on titration with Topamax. Slow is the best way as the SE's get horrible otherwise.
Alli

Wow! Two positive posts in one day! I don't know what to do! I am super happy for you. I hopw that everything helps! I am singing your NP's praises!

Yeppers. I know all about topamax. I am upping my dose by 50mgs at night, and I know I can handle that because I do it by myself sometimes when my migraines get unbearable. I have already titrated up to 100mgs and I concider myself a topamax expert LOL since I have read countless studies on it. I know a lot more about lab rats now.

As far as the arsenal..let me explain my method. I get one or two severe migraines a month that leave me down and out for about 3-5 days. I do not usually respond to triptans but I am open to trying them. What my doc said was to take the Relpax first at sign of severe migraine. Wait a couple hours to see if that works. If it doesn't, take a second dose. If that doesn't do it, start the steroid pack and take a dose of stadol to calm the pain. The steroid pack should start working and I shouldn't have to use too much of the stadol. She only gave me two doses of it, or two vials..I have no idea what stadol comes in or how to use it. I just know it is a nasal spray and the script says #2.

I use fioricet w/ codiene for all the other smaller migraines I get because it works. I use that 2x a week, sometimes less and on bad weeks more. I try not to overdue it because it is addictive and has a high chance of MOH and if my m's are bad now I have no interest of seeing what they will be like with MOH in the mix.

The new arsenal is really to control those crazy bad migraines. I am more interested in the oxygen therapy and acupuncture. I hope those two work because they AREN'T medications and I hate pills!

Thanks for the info though Baad, it's good stuff. I will keep it in mind especially regarding the topamax and acupuncture. I'll call my NP and talk to her about it. Great point!

O2 usually helps with cluster headaches but rarely does anything for migrainers.

I'm glad you have a decent doctor. I still have until May to see a decent pain specialist.

Yeah milo, thats what she said too. She told me to go to a tanning salon first and try it out before shelling out the cash. She felt really bad that I was so desperate and I told her it was important to me to try all things non-medicine first to see if anything would work. I'll give it a try, after all it wont hurt!

I wish you luck on finding a good PS.

If you want to go non-medicinal, have you tried the herbal/vitamin route? I know you guys don't have a tonne of cash, so migravent is probably out as it's about 75.00 a month, but you could get the supplements for a lot cheaper online.

I can give you the dose amounts and the four ingrediant names if you want.

Also, look into biofeedback as well as accupressure.

Be careful with the steroid pack....steroids should be used with the utmost respect....very serious side effects. I had a full "moon-face" within days of starting my steroids. But the moonface is the least of your worries with steroids.

My headache specialist says they should be used as a "break glass in case of emergency" med only.

I'm impressed! You found a doctor that actually promotes the "non-conventional" or Western medicine ways. Kudos to that doctor. I am so happy for you Lovegia! Since you are new to stadol, those two vials will probably last you at least 45 days, but maybe not since your migs are so bad. Aren't you glad you could start your weekend off like this instead of in pain!

Thank you KW. If you don't mind, please explain a little more about stadol dosage and the vials. How many doses can I get out of each vial? I would like it to last more than 45 days, but since I have no clue about dosing i'm not sure how long it will last. My trip to the pharmacy has already cost $90 with insurance due to the Relpax ($70 COPAY!!!) and that was without stadol, so if I can make it last longer I certainly will! I was thinking about diluting it like Bubbs does with water. I will try it full force first and see how it works. If there is room to dilute, I will call my doctor and speak with her.

Milo, Thanks for the information! I have tried magnesium, coq10, and b-complex. I think I am only missing butterbur. I did not have much success and I stayed on that combination for 6 months. Please post or PM me all the information you have on it, and the cheapest places to buy from if you know. If not, no biggie, I'm a great shopper. My groceries for two weeks only cost $50 with coupons and sales.

Also, please explain side effects of steroids if you don't mind. I do not know what "moon-face" is. Whatever it is, as long as all these side effects go away I think I would take it anyway since I am in so much pain. I have seriously had urges to stick sharp things in my head. I constantly bruise my face from pushing so hard and I wake up sometimes with my fist in my eye.

I will start looking all the side effects up now but I like personal experiences better. My doc said that the ones she prescribed are not that bad, I actually asked because I was concerned they'd make me jump out of my skin.

Thanks again for the feedback everyone. I get nervous trying new medications so I love all the response.

Yippee! Ding dong the witch is dead, the wicked witch, receptionist witch, Ding dong the wicked with is dead!!!!

I have sucess with stadol but use it very sparingly, maybe once a year, as I found when I used it more often I kind of liked the WOO HOO feeling. Scared me a little.

I know people who LOVE going on steroids. It makes them upbeat, energetic. I despise them. They make me nervous, give me panic attacks, VERY agigtated (dang, would someone tell me how to spell that?). I literally jump out of my skin for days!

I am SO happy for you!!!!!!!

Charlotte

you sound like you had a really positive meeting with your doctor, when that happens it gives you hope, and reassure's you that you arent a complete right off, thats how i tend to feel anyway, which is great, good luck keep us informed of how you are getting on

theresa x

aggitated

Concidering common cold medication makes me jump out of my skin and my inhaler used for occupational asthma makes me go NUTSO i'm sure the steriods will drive me insane but no more insane than the pain of a crazy migraine.

I don't think I'll like the woohoo feeling. We'll see. I don't like being unable to take care of my baby G. It makes me feel like a bad mommy.

oh so maybe not quite the rescue package you were hoping for .

Ya know what, if it rids me of pain it is better than no rescue package which is what I was dealing with! I am very positive about this treatment since it is a treatment compared to nothing at all.

If nothing else I have the stadol which is apparently a migraine knockerouter. I'm not happy about it taking away my mommy skills but so does a migraine. I'd rather have my baby see me woozy and out of it than nasty and in pain.

Today Gia mimicked mommy and held her little head. It made me very sad to see that, but also thankful that I have a whole arsenal of drugs to try. She's still young so I have time to figure out something that works before the image of mom in pain sticks in her mind.

I understand the concern about the medrol pack, but don't not take it just due to worries about the side effects. Cold meds can make me a bit spacey too, but if I'm really in a migraine rut, like I've been recently, the medrol pack can really help reduce the swelling enough (sinus and capillary- sinus issues are a personal trigger) to stop a severe multiple migraine attack.

I do have to watch out for eating...anything not nailed down is yummy on medrol, and I talk a LOT more, but my head stops hurting and I feel better, so I'll deal with the slight weight gain and actually get to where I can live again.

Since it's only 6 days of medicine and my severe migraines can last off and mostly on for 12, it worth it to me. Hope the info helps you.

Lovegia,

The Relpax has worked decently for me, if only I had more. I only get 6 a month and yeah, my co-pay is 75 dollars for 6 pills.

I need a dictionary for this forum..what is MOH?

MOH- medication overuse headache aka rebound headache

Don't expect Relpax to be any different than any other triptan that you have tried. If triptans haven't helped you in the past chances are Relpax won't be any different, although you never know until you try. I have tried it. Same result for me as all the others. Works like magic after 2 hours, 2 days later migraine returns as bad or usually worse than before. Taking it again, takes 3 or 4 hours to make it go away, migraine comes returns even faster and worse than before. My neuro told me that is not the norm for his patients although some of his patients do react that way.

Thanks guys!

Sara,
Im not worried about over-eating for a couple of days. Topamax has made me loose 30lbs in 3 months. Thanks for the warning, but I'll actually be excited to get hungry again LOL I love food!! I can't wait!

And haha about talking a lot. I'm sure my hubs will LOVE that. I already talk plenty enough for the both of us and he is a quiet withdrawn man.

thegirlwithbrowneyes,
It's good to know you use relpax..I'll pm you.

Baad,
I had success with Frova for the first two or three times I took it however it stopped working. I'd gladly pay the $70 for it if it even helps just once. I doubt it will, but its worth a shot. Besides I have a trust relationship with my neuro office and they want me to take the relpax before using stadol so I have to try it out. Such is life. At least there are other people I know who benefit from triptans unlike the Nucynta which I had paid $70 for and in order to get another narcotic I ended up giving it back to my doctors office.

Again, thanks so much for all your useful information. I can't tell you how much I appreciate your comment about trying a few different methods at once. I didn't think of it and I'm sure it saved me a whole load of trouble.

yay! finally a nice doctor who cares about the patient, and who fired the wicked witch of the Reception to boot!

I hope the stuff she Rxed will help you, Lovegia!

Risa

Wow - you're doctor sounds wonderful...I am happy for you! I want one of those. :-)

I know weight loss can be one of the Topamax side effects. I have been on it for 2 months and have not lost one ounce. My appetite is the same. Everyone is different.

Baad,

Yep. The appetite difference in some is because it effects the GABA receptors in your brain, or so I've read. I'm trying to grasp it but the medical terms are very difficult and reading a sentence takes about an hour because I have to google each word! I'm doin it though