LONGTERM MEDICATION OF MIGRAINES

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CRANKY 1
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Date Joined Aug 2005
Total Posts : 616
   Posted 9/25/2005 5:35 PM (GMT -6)   
Hey Guys,
 
I'm just coming off a wicked two day migraine, and I'm so pissed off I can't stand it.  I've had migraines for over thirty years (I'm 40), and during that time, I've been on or tried virtually every medication used for migraines.  I'm currently taking 200mg Topamax as a preventative, Stadol Nasal Spray as an abortive, and whatever I can get my doctor to prescribe for pain management(sometimes Lortab) if she's in the right mood.  I get no relief from any pain medication other than something narcotic at this point.  This has been the case for a long time.  I've been averaging having to get a pain shot (nubain/phenergan) from my doctor's office every 8-10 days, but I have to use the Stadol NS a lot more frequently. 
 
Well, Friday I started fighting off a migraine with the Stadol NS in the afternoon.  It kept trying to come back (weather front moving in) all evening and by 3am, I had a full blown migraine.  I got my mom to drive me the the doctor's office when they opened at 7:30.  The doctor on duty was actually just a nurse practioner, but he's a wimp.  He looked through my chart, and I've seen him before for the same problem.  He decided I was having a rebound headache (NOT!), and would only give me a shot of Toradol or Ultram.  Well, Toradol does nothing for me, and Ultram doesn't work because I take Effexor.  I explained this in detail, but got nowhere.  That was all he was willing to do.  My other choice was to leave and he would refund my appointment charge.  Gee, what a guy.
 
So, off to the ER I went.  Of course, it took three hours to get seen by the doctor (but he was HOT!!! tongue ) We had a nice little discussion about my migraines, symptoms, medication history and so forth, and I promptly got a shot of 10mg of morphine and 25mg of phenergan.  Unfortunately, it took so long to get some relief, I ended up having to get a second shot of the same thing, which took care of the migraine nicely.  He also gave me a prescription for a few percocet, for after the morphine wore off.  Good thing, cuz I felt like a horse had kicked me in the back of the head.
 
It is amazing to me how wide spread the medical profession is on pain management.  At the ER, I've been given everything from Nubain to Dilaudid.  Some doctors will prescribe narcotic medication for later and some won't.  I am having the worst time finding decent pain management.  Even the pain clinic here won't prescribe medication to keep me comfortable.  Unless my doctor is at the office, I guess I'm stuck going to the ER when I need a shot.  Doesn't seem like a great plan to me, but oh well.  If I could just find a good neurologist.
 
Thanks for letting me vent.
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 9/25/2005 9:44 PM (GMT -6)   

Leigh Ann...

I find the same problem...its a shame that the "drug seekers" of the world have made it so difficult for those of us that are legitimately in pain to be treated with respect and to be treated with the medications that we deserve and that will give us the quality of life we need just to get through the day to complete or little tasks like getting out of bed, getting dressed and going grocery shopping.

This is when we need to get tough, don't give up...write letter to everyone...send them on to all the appropriate channels so that this problem is not ignored! This needs to be addressed...

Hang in there and do what you need to do to be treated with respect and treated adequately with the proper medications...((getting the step ladder to climb down off my high horse now!))

Sara


Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 9/28/2005 4:34 PM (GMT -6)   

Leigh Ann

Your circumstances almost mirror mine.  My family doctor was very understanding of the fact I needed pain meds and he did prescribe them.  What I liked about him (he moved away over a year ago and I still miss him sad ) was he did not think I should settle for pain meds and try someone who could work on preventing them.  He admitted he did not have much experience with controlling migraines and I respected him a great deal for that.  He sent me to 5 or 6 neurologists.  The first one pretty much "dropped" me after he found out I did not have a tumor he could operate on.  He wanted to settle for pain meds so I moved on.  It seems every neuro I went to was ready to give up after a couple of medication trys.  My new family doctor (who continues to prescribe pain meds) sent me to a neuro he went to med school with.  What a fiasco!  He wanted to try a couple of different treatments (which involved painful injections) and I was willing to try anything.  The pain clinic decided they could no longer prescribe narcotics so my family doc. continues to.  No one told me that the insurance was covering only a small portion of the treatment costs and I did not get a statement from the insurance company until the treatments were finished.  Now I owe the doctor so much money they won't let me go back until I get the balance paid down. I used to go in for the nubain/phenergan shots but they quit helping.  The family doc switched to demerol/phenergan but they quit helping.  Now I pretty much rely on the ER as well and if I am luckly I get a doc that will give me morphine, only about half of the ER docs will.  I am to the point that morphine is the only thing that works.

Sorry, I did not mean for this to be so long.  When I start thinking about the whole situation I just need to vent and this seems to be the only place I can do it.

 

Thanks,

Dan

 


droll  (AKA Dan)


droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 9/28/2005 7:56 PM (GMT -6)   
Sara,
 
I have not heard of these two meds that bethuk mentioned being used for migraines.  What do you know about them as far as how often prescribed and succes rate?
 
Thanks
 
droll  (AKA Dan)


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 9/28/2005 9:00 PM (GMT -6)   

Had A humdinger of a migraine on Monday afternoon.  Had been fighting it off since Sunday afternoon.  Went to my DR Office as a walk-in and it was standing room only.  This was about 3pm, and I couldn't get in.  Went home for a little while.  I couldn't stand it anymore, so about 7:15, went to the ER.  DIDN'T GET A FREAKING SHOT UNTIL 2AM!!!!!    Needless to say, by then, I was dying, and my poor father looked like death warmed over.  At least he got to watch the entire Monday Night Football Game.  It's never taken half that long to get seen by a doctor before.  The Doctor's choice of medication was, (are you ready for this now?) Thorazine.  Two great big huge needles of the stuff.  I looked up its uses, and it's primarily an anti-psychotic, but about half way down the list of uses is "intractable pain".  I had to look up "intractable"  which means stubborn or difficult.  The shot didn't work particularly well, but nobody checked on me for an hour.  By then, I just wanted to be discharged and go home. 

I gotta work out some kind of deal with my doctor that they slide me in for a shot, regardless of what else is going on, and that I get at least a Nubain injection, regardless of what doctor is on duty.  I'm sick of the doctor d'jour and the medicine d'jour.  Especially when I know that I'm not going to get any pain relief from some weenie guy whose too afraid to prescribe strong enough medication.

So many doctors, so many medications,

Leigh Ann cool


"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


mydogsandme
New Member


Date Joined Sep 2005
Total Posts : 8
   Posted 9/29/2005 1:02 PM (GMT -6)   
bethuk do you worry about what all these tablets may  do to you in the long term? Everyone here seems to be on so many-it seems so sad especially when people are still young. I'm off to the doc again tomorrow but I'm kind of scared of getting more tablets as I have a really sensitive stomach and IBS so everything makes me sick. sad

droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 9/29/2005 4:22 PM (GMT -6)   

Leigh Ann

During one of my trips to the ER one of the doctors finally told me it was possible for my doc to give the ER a standing order of treatment for my migraine.  My family doctor did this and it worked great.  Once I told the triage nurse I had a standing order I got right in.  The doc was happy because he did not have to stick his neck out for the morphine it takes to get rid of one that sends me to ER.  Unfortunately it seems to be difficult to find a doc willing to do that.  My doctor moved over a year ago and I have not been able to convince my new doc to give me one.  He will rarely stick his neck out for anything stonger than demerol which doesn't work anymore.

My best advise - talk to your doc about a standing order in ER or look for one that will do it.  I am still searching.

 


droll  (AKA Dan)


droll
Regular Member


Date Joined Jun 2005
Total Posts : 85
   Posted 9/29/2005 6:52 PM (GMT -6)   

bethuk

If your neuro found a combination drugs that does a fairly good job of controlling your migraines you are fortunate.  I have been to several and they have not found the right combination yet.  There are many times I need to go to ER for pain control but just don't because of the hassle and financial reasons.  All my neuros have seemed to think that Topamax is the current wonder drug for all.  I know people it has helped and have to talked to people here it has not helped.  The only thing I have gotten out of Topamax is bad side affects and I have experimented with high and low doses  I have gotten better, through necessity, of hiding how severe the migraines are from my employer.  The next time I go I am going to inquire about some of the meds you have found successful.

 

Has anyone heard of an extremely low white blood cell count being due to high doses of Topamax?  The docs can't even agee on this.  One doc thinks Topamax was the culprit and another thinks is was the Depakote I was taking right before I started the Topamax.


droll  (AKA Dan)


tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 9/29/2005 7:15 PM (GMT -6)   

Droll...

Missed you!

Propranolol...is Inderal (generic form) I take that daily and it helps some...not as much of a difference as Topamax, but I am taking it for blood pressure also.

 

The low white blood count, I have found more common with depakote than with Topamax (not that it is COMMON with either, but I had a doctor that refused to prescribe depakote for some of the side effects that were possible and I think that was one that he ran in to!)

Tell me what's been going on with you!!!!!!!!!

Sara


Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 9/29/2005 8:53 PM (GMT -6)   

Hi everyone,

I read through the posts on the difficulty treating migraines and can sympathize. I've been offline for a week fighting a couple of bad headaches. I unfortunately know mine are rebound right know as I wean off painkillers. When they're really bad they trigger migraines.

It's tough because a good neurologist can be the best medicine for chronic migraines. I complain about mine occassionally but overall he is still very good at what he does and in partnership with my doctor does a great job.

I've had some great luck with melatonin and valerian root, two natural remedies. Melatonin helps me sleep and valerian root helps me with anxiety. These coupled with a pain killer and / or a muscle relaxant often work really well. I've got the medications I need to fix my headaches on hand rather than needing to go to an ER or clinic.

Dan - I found that with Topamax, very slow is the only way. It is working better for me now that I increase it really slowly. It still takes me several weeks to adjust and my poor husband has to put up with a day or two of crying but that usually passes. I am feeling better from the weight loss.
 
Mydogsandme - I think we all worry about taking too many pills, the side effects and the long term effects but the constant pain is intolerable. As you probably know the depression that accompanies chronic pain can also be debilitating and have long term effects. I struggle to take as little as possible but also maintain as much quality of life as possible.
 
Leigh Ann - I'm so sorry you're having such a tough time. Hang in there, you'll figure it out. There has to be a neurologist or doctor that can help you. I'm inspired by you that you ask for the medications. I'm lucky that my doctor gives them to me without a hassle but I have been afraid to ask and have suffered for fear that somone would think I was a drug seeker.
 
 
Nicky
________________________________________________________________________________
 
The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live in the present moment wisely and earnestly.   Buddha


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 9/29/2005 11:05 PM (GMT -6)   
Hey Guys,
Thanks for the input.  I'm going to see my GP tomorrow and get a referral to a new Neurologyst.  I'm also going to see if I can get something done about that "standing order" as I'm sick of the drug d'jour approach, that is, if I can get anything at all.  I'm also going to address my lack of sleep issue again.  My Dr. was suppose to get with my PSYCH to work out some medication for that, but it's been weeks and it's causing a lot of headaches.  My counsellor said she would hit my PSYCH up for a sleeping pill prescription for me in the meantime if I didn't get through the other way.  Anyway, we'll see what's happening tomorrow.
 
It's comforting to know that I'm not the only person getting the run around, but in your posts, I saw a couple of scary things... nono
 
DAN--You said you had been super careful to hide the severity of your headaches from your boss.  I've been there myself, but you should share the information immediately with either a HEALTH & SAFETY department or HUMAN RESOURCES manager.  This information is confidential, and cannot be used against you, but can come in helpful to save your ass if a particular situation calls for it.  Been there, done that my friend.  Trust me. tongue
 
Nicky--Be very careful when mixing herbal remedies or high doses of vitamins/minerals unless specifically recommended to do so by your doctor.  You have to remember that these are not currently regulated by the FDA(which is the way we would like to keep it), but along with that flexibility, comes a wide variation in quality, concentration, and purity.  Plus, so many of these remedies haven't been studied well, so interactions and side effects are unknow.  Just be careful girlfriend.
 
I'll give you an update when I get back. Let me know how you're doing.
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


mydogsandme
New Member


Date Joined Sep 2005
Total Posts : 8
   Posted 9/30/2005 5:32 AM (GMT -6)   
went to my doc today and she's given me preventatives to be taken at night as apparently they make you sleepy - I'll see what effect they have. I can understand it's preferable to take tabs rather than put up with constant pain- it's making members of the family see this! You just can't function with this pain can you? How do people manage if they work full-time? I just don't know- I only work a few hours a week and still struggle.

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 9/30/2005 12:39 PM (GMT -6)   
I forgot to mention!!!
 
There is a form that you can have your doctor fill out ahead of time, in the event you do need to go to the Emergency Room...it will have what medication you take regularly and what your doctor would like them to give you in the Emergency Room to break the headache cycle...that way, they know you are not a drug seeker and they know you are seeing a neurologist etc...and it has specifcs there and that you have already discussed this with a reputable doctor.
 
I will tell you though, sometimes this will irritate the ER staff if they have the GOD complex because they feel they are being told what to do. I personally don't care (smile) because it is what my physician wants done and I know I will be treated properly and with respect.  yeah  
 
I am going to find that form and maybe a few others and post the links...Stay tuned!

Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 9/30/2005 12:43 PM (GMT -6)   
********Please see new thread for those form************

Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 10/2/2005 8:45 PM (GMT -6)   

Hi Leigh Ann,

Thanks for the warnings about the herbal remedies. I check everything with my doctor before taking them and he's given me the okay. I also received some advice from a naturopath on the brands that are reliable concerning the makeup and concentration of the various herbal brands.

Have you considered trying another doctor? and then setting up a treatment plan? I have a plan in place with both my doctor and neurologist so that I'm not put in the situation that I'm asking for medications in the middle of the headache. I also keep track of all of my medications in a headache diary so that both doctors can see what I'm taking and how often and see that I am using my medications responsibly. Just some thoughts.

I looked up Stadol NS on many websites because I had never heard of it and it was often grouped with Tylenol with Codeine which is what causes me rebound headaches. Just a friendly question - is it possible that some of your headaches could be rebound if you're using a lot of Stadol NS? When I'm suffering from a rebound headache from Tylenol with Codeine, nothing works including Toradol except for a narcotic that is as strong or stronger. My rebounds can trigger migraines. I'm only suggesting this for you to think about.

Good luck - you'll figure it out. yeah


Nicky
 
The secret of health for both mind and body is not to mourn for the past, not to worry about the future, or not to anticipate troubles, but to live in the present moment wisely and earnestly.   Buddha


laura l.
Regular Member


Date Joined Oct 2005
Total Posts : 54
   Posted 10/28/2005 2:43 PM (GMT -6)   

Hi Leigh Ann,

this is my first post, so I do not know how to do the title thing -- bear with me.  Regarding getting consistent care in the emergency department: I am an emergency physician (not practicing at the moment due to multiple herniated neck discs and [you guessed it - migraines]).  Contrary to Sara's belief (although I know for a fact it is well-founded :-)  ) not all of us ER docs have a God complex.  Formulating a care plan with your primary care physician and/or neurologist will provide guidance for the emergency physician when you present with a migraine.  Speaking as someone who has been there, it is great to have background information and a plan in black and white -- something to do that will actually help the patient I am seeing.  I was never one of those "weenie" doctors afraid to give narcotics.  Quite the contrary -- I took pain relief very seriously and the nurses called me "the morphine queen"...So having a care plan on file in the emergency department could be very helpful for you.  I would definitely look into it.     If you have such a plan an emergency physician would have a hard time explaining why s/he did not follow it.  Hope this is helpful.

Laura

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