Doctor is driving me bananas

OK, so I think you all know the story up until now. Two admissions in the hospital in the past 15 weeks & I'm still around a 10. My doctor doesn't believe in using narcotics & every week I see his (STUPID) NP who is his mouth-piece but can't make decisions and occasionally forgets to ask him my questions. I just saw her on Tuesday & the latest thing the doc said was that he wants to re-admit me. WHY???????????

It hasn't worked in the past, why try it again?

I have an appointment with him on December 24th, which I'm sure will be rushed. Any advice would be appreciated.

Rachel

Rachel238,

I'm so sorry you're having such difficulty getting some help from this doctor. I am thankful they're going to get you in on Christmas Eve.

I suggest you take someone with you who can back up history on your pain levels, how they have affected your life and be an advocate for you.

I also suggest you take a typed list of everything you want to cover with the doctor--make 2 copies--one for you and one for the doctor. Don't leave until he has covered everything on the list with you.

I hope they don't hospitalize you on Christmas Eve. That would stink.

You're in my prayers. God bless.

Becky

Becky,

Your reply is so ironic. I have a typed list that I made for my second admission (when I knew I was going in) that I update before every visit. I bring my husband with me to every visit, too. This time they offered me three days of triptans, two days of Ultram and two days of nothing. He repeated, "three days of triptans, two days of Ultram, two days of hell, ok... we'll see."

The NP just called & said that the doc really wants me to go in for a third round of DHE. I think we're going to have words on Christmas Eve Day.

Rachel

Is finding another Doctor an option?

Last night we celebrated Hanukkah with my parents. Between dinner & dessert, we discussed the options. They all think hospitalization is a good thing. Especially since... did I tell you... I'm supposed to go on a cruise from January 8 - 18. They want me well for that & just in general.

Roy (my husband) offered a suggestion that while each attending comes in to see me, I could have a mini "interview" with each of them. Tell them what my doctor has been doing for me & see what they think. See what they would do. How they would treat me. And yes, Dan, maybe switch doctors.

I, of course, don't want to go to the hospital because it's a pain in the behind, boring, lonely, etc. They seem to think that "if the doctor said it's the best thing to do, then he's right." Well, doctors aren't always right, are they? And am I going to have to do this once a month for the rest of my life?

Sorry to be so negative, it's just that I'm so confused.

Rachel

You might have told me once but refresh my memory. Are you working with a Primary Care Physician (PCP) who overseas and keeps track of what the other doctors are doing? Or are you just working with one doctor?

I'm being treated by a headache specialist. I see my
PCP when I feel I need to check in.

I've called the answering service twice tonight because my head is killing me. I haven't gotten a call back. Bad doctoring.

So after five calls to the service the oncall doctor finally called back. She listened to my problem (pain) and said she'd have to consult with an attending. The attending called back 20 minutes later with really no more options than I already have. He said I could double the dosage of Zyprexa and that would knock me out and hopefully the pain as well.

It's now 7 am and it's beginning to snow. We are expecting anywhere from 1 to 12 inches. My head is spinning but I'm not calling back because I know they won't help me.

I have an appointment with my doctor on the 24th. That's only a few days away.

And I'm penciled in for that admission on the 29th. The rest of my family seems to think it's the right thing to do. Last night, I agreed with them.

Rachel

Rachel,

So sorry to hear how bad it has been. Please forgive me as I am sure you have posted this already...but when you go in the hospital what do they do for you? You have had an MRI recently I am sure; can't they DO something to stop this constant pain?

I am feeling for you and wish you luck with the next hospitalization.

SEB (Sarah)

Rachel,
Since they are so eager to admit you, maybe they should admit you now? If it's inevitable, maybe doing it sooner rather than later would stop your pain sooner, and hopefully get you in and out before Christmas?

Of course, I don't know if being in the hospital will help you at all. I'm hoping they'll give you painkillers that will actually work for you. Stadol injections or something.

Hoping for pain-free days for you, and soon.

Bubbs

Bubbs - will explain total hospitalization when I'm not on my phone.

Dec 29 was the first available bed in the Headache Ward. Yes, this hospital actually has one. Last time I was one of the over-flows so I was in orthopedics, which is on the same floor and everything. I just hope to be part of the main HA Ward because it's closer to the nurses station and I'd feel like I'd be forgotten less, not that I didn't get excellent care.

It does mean that I will spend new years there - no big deal to me. Bigger deal because of where the hospital is in the city and people will be partying in the streets.

AND this coming weekend I also celebrate Christmas, pack for the hospital AND pack for the cruise (if I go).

Rachel

Howdy Rachel

It appears that your pain cycles up and down through the day. A 10 is the worse pain imaginable, pain so bad you are likely to pass out. Being able to type on here means to me that pain must drop to a 7 or less at some point so you can look at the monitor enough to type. That's the way it appears to me ... your mileage may vary.

If you have had two DHE treatments with no effect ... why did they release you from the hospital? It seems odd that any hospital would release any patient still in extreme pain ... especially a headache unit (what a cool idea that is! Wish I had access to a "headache unit)

Do you trust your doctor? If you do trust your doctor, follow their medical advice. If you do not trust your doctor, find a new one immediately. Trust between doctor and patient is critical, essential to good medical care, not to mention quality medical care.

But I am very curious as to why any hospital would release a patient after the treatment for pain was ineffective.

Richard - my pain scale is definitely adjusting after this weekend. The only blessing to what you wrote is that I'm on an iPhone. One, it automatically corrects some of my mistakes. Two, it's not so bright.

This is a 10. A wowzer q10. What i'd been feeling before must have been a 9 on severe days and 8 on days I could function. I haven't gotten out of bed.

Rachel,
That already explains alot, if they don't have a bed until the 29th. It still seems to me that they should be able to help you more than they have (dr. or the hospital).

It must really suck, I'm so sorry. On avegage my migraines don't get above a 7. I think I've had a 10 maybe 3 or 4 times a year, that's all. When they get really bad, they're an 8 or 9. I get 7s often, but usually not worse than that. I get 4 or 5s on a daily/every other day basis and they escalate to 7. I get an 8 or 9 on average once a week, with an extra one thrown in at that time of the month. The 10 slips in randomly when I'm extra stressed, or if I drink (which I don't do any more) or if there's some other trigger that slips in.

I try to avoid all the triggers I can because I can't afford the ER any longer. I'm glad I can manage things better than I used to be able to. I can't imagine what I'd do in your situation. I still think the dr.'s idea of putting you on a medication "holiday" when your pain management is not under control. It's like holding food just out of the reach of a starving person. So cruel.

Please let us know your progress. We all care about you!

I love coming here to my migraine family. It means the world to me that you care so much.

Bubbs - I think there was a miscommunication. I'm still taking my preventatives, I'm just not allowed narcotic (or really any type of) pain killers.

My husband and I will be making our list (and checking it twice) for my doctor's appointment on Thursday. Will ask about migraine management and pain management in two separate questions.

Tomorrow I hope to go to my parents' office to help out and have access to a PC all daynand will explain hospitalization treatment. (I'm on my iPhone in bed. My laptop is downstairs but is also very bright.)

Good night all. Thank you for making this day easier.

Rachel

Rachel,

LOL to me, pain killers IS pain management Preventatives are a whole different story. tee hee

But seriously, its obvious something (or more than just one something) in your routine isn't working - either a preventative or a pain killer - for you to be in pain since August, you know? It seems like this is not the time to take you off of all painkillers. It seems like the time to take you off all painkillers would be when your 4-month-long level 10 migraine is more under control.

It kills me to see a fellow migraine sufferer go through something like this and not get proper treatment. You deserve to get the correct treatment for your disease. You also deserve to get support from your family.

As promised, this is what happens when I go in for hospitalization:
I get IV lidocaine, reglan, benadryl, torodal, magnesium and DHE. Last time I got a "push" of Thorazine which seemed to help.
I couldn't handle the lidocaine - lots of vomiting.
I got DHE as a rescue drug at home & it did nothing.

So really, I don't understand why I'm going back to the hospital.

I don't know if this is any consolation or not. Once I had to have surgery on Christmas Eve. The hospital was fairly empty of patients and the nurses felt sorry for me so I got extra nice and extra often attention.

Chris

Rachel,

DHE? That's a term I'm not familiar with. Could you explain that one? Thanks.

DHE is a migraine abortive. More info here...

http://headaches.about.com/od/medicationprofiles/a/DHEProfile.htm

I too had an unstoppable migraine starting in August and it finally let up in the second week of December.

I was in ER three times, and they sent me home each time without ridding me of the pain.

These were the only three times I have ever been to ER for a migraine.

My doctor's locum argued with me after the second visit that "they wouldn't discharge you still in pain" but they did, all three times.

The worst of the migraine eased off after two weeks on dexamethasone. The second week on dex I also got my botox injections. I had already had the injections in September or the end of Aug with no effect.

Thank god they eased up for the last two weeks, probably as a result of the botox, as I have been forced off of any pain meds and only was given two pills of relpax.

I feel the ha slowly slipping back in now, but I see the ha specialist again in two weeks so I don't feel desperate.

I feel your pain, and hope so much that yours eases up, even if it's just for a short while like mine. I have done so much living in the past two weeks. I wish you the same.

I went to the HA specialist today. He has no answers for me. I even told him that I'm not sure that I walked out of the hospital with a 3 the last time at all... That I think I was trying to please my husband, my mother and even my doctors.

Due to the fact that nothing has worked thus far, he doesn't want me taking an abortive meds or pain killers between now and my readmission on Tuesday. It sounds easy. But there's Christmas and an impending storm. This sounds very scary to me.

I have to be out of the hospital by January 7th because we leave for the company cruise on January 8th (we go to Florida on Friday, the ship leaves Saturday). No pressure, right?

The nurse told me to take it hour by hour today. But I just don't know.

The doctor wants to do an MRV, an MRI of the veins, which I agree with. He also wants to do another spinal tap. Ugh. I guess. If that's what I have to do.

Merry Christmas,
Rachel
Rachel