Migraine

I'm trying to sort out the whole status question and wondering when I should seek additional help for my migraines. i have chronic, daily migraine. Basically, the migraine never stops. The pain level varies (between a 4 and an 8 typically), but the aura and nausea are usually always present.

I know a person is in status after 3 days of migraine--which basically means I'm in status all the time.

But I've been struggling with a very, very high pain migraine since last Friday--6 days now. I'm talking can't move out of my bed, throwing up many times a day migraine. Today, I would really like to chop my head off. I'm very tired of it hurting and I see very little chance of it getting better with time. My migraines are not responsive to triptans. I have rescue meds, but have already tried them this week. They did give me a short break in the pain, but it returned as soon as the pain meds were out of my system.

I cannot go to the ER every time I have 3 days of migraine. Because, basically, I'd be there every 3 days! But I start to panic and get quite desperate when I have many days of very high pain in a row. I can't keep going like this. I just don't know what to do at this point.

How does a person like me know when it's time to call or visit the ER for help? I feel like the "normal" rules don't apply, when I've got constant migraine.

Thanks for helping, guys.

jenny

Jenny,
I'm really in the same boat you are.. I'm always somewhere between a 4 and an 8. I never really know when I'm in status either. I usually end up in the ER when I just can't take it anymore. As miserable as I have been, I haven't been to the ER in almost 2 months. There are probably a number of times when I should have gone and I haven't.

I'm not sure how much this will help, but I tend to go to the ER after I've gone about a week with closer to an 8 pain level. If I were you I'd probably be at the point where I'd be ready to have DBF force me to go to the ER. Anything for some relief. But I've also been hesitant to go back because the last time the meds didn't help and they didn't seem too willing to try something else than what they've given me the last few times.

So I'm probably not much help... but that's what I do when I'm in your shoes. Good luck and keep us posted!

Meli

Jenny,

I think it's time to call your doctor for a heart to heart. If you are always in status this is not acceptable. Please, call your doctor to discuss what you need to do

You have mentioned in the past how difficult it is for you to leave your family if hospitalization is warranted. But Jenny honey, you need to think about what this is doing to you. You need to get this under control please.

Jenny,
Lots of gentle s- I've had your same question at times, so I can empathize.

I agree with Cindy. Call your doctor, get some professional advice and new plan.

I'm sorry to know that your stimulator isn't helping you at this time. I'll keep you and your family in my prayers. (Migraines seem to effect everyone we love doesn't it?)

You can overcome this.

Thinking of you,
Liz

Hi Meli, Cindy, and Liz,

Thank you all for the kind, thoughtful replies! My high level of pain continues, but I did talk with my HA specialist. He ordered an extended steroid taper. So this is day 2 of the steroids. (I think the whole course will take about 2 weeks.) I don't really handle them well. I don't sleep when taking them, but I feel completely exhausted! I haven't been able to sit still all day. That causes further trouble for my head--I think I'd really be handling the pain better if I could just lie in my dark bedroom. Steroids really are crummy. but I sure do hope they help.

My doc is aware that I have had one long migraine for quite some time. I think that's what made me a good candidate for the stimulator. Believe it or not, the stimulator IS helping me. It relieves the pain in the back of my head almost entirely. But the front of my head and the area around my jaw is just raging right now. I'm not sure if the stimulator brings about more frontal pain for me...Or if I'm just more aware of how much the front of my head hurts (since the back feels so darn good!). But I DO know that I'd never part with the stimulator. It has saved me many, many times by giving just enough relief to keep me going.

Meli, I'm sorry that you're in a similar situation! Funny, but DH does for me what your DBF does for you...He tells me when it's time to throw in the towel and head to the ER. The folks at my ER are pretty good with me. I think they know that I only come when I'm desperate. Usually after many days of high pain and lots of vomiting. And I really don't want narcotics--just some decadron and magnesium.

Cindy, I'm still struggling with the hospital question. My doc has given me an open offer that I can opt for inpatient care if I'm willing to do so. I just feel so guilty. My kids and DH have had to pull up so much slack for me already. I think I'd feel like a true failure if I had to go for an extended hospital stay. Also, to be honest, I'm absolutely terrified of going inpatient again. Years ago (when I was with another doc), I was inpatien for 10 days, with absolutely no relief. I was also rooming with an elderly, demented patient who blared her TV and had the lights blazing all day and night. It was like hell on earth. I actually tried to leave AMA! I'm so afraid that something like that might happen again...

Liz, you'll never know how much your prayers and kind thoughts mean to me! You're right. Migraines really have had an impact on my family. I'm really feeling bad about that lately...They certainly didn't ask for this! And they deserve much better. Sending right back your way!

Tonight is movie night for the family. It gives me a chance to lie in a dark room and snuggle with DH, while resting with my ice and pillow. I sure hope tomorrow brings less pain.

Sending to all of you. Thank you guys.

jenny

Jenny,

I'm just catching up to this post. My heart goes out to you! I'm so sorry you're still having such a rough time but I'm glad you've already called your specialist and he's gotten you on some steriods. I'll keep my fingers and toes crossed that the steroids work for you.

Gentle hugs headed your way

Jenny,
I don't have any words of wisdom, but I just wanted to say that I hope the steroids are helping and you are feeling better by now. I've been on steroids many times and I don't like the side effects, but they do work for many people.



Peggy

You've got a big hunk o' droolie going out to you, too, Jenny! And prayers and smooshes, too.

I'm so sorry you've been dealing with this. I hope the steroid pack is going to be a big help. It's good to know your doctor is on board and is actively trying to help you get this sorted out.

I can't blame you for being leery of inpatient considering that last go at it. It would be difficult to choose that option when you had such a bad experience last time. No one would want an encore like that. But I also know that in a lot of hospitals across the country, they've made a move to ditch the shared room deal. Both hospitals here only do private rooms now. Perhaps things have changed like that where you are in the past several years when you last were inpatient. It might be worth asking about.

I don't think you'd be a failure at all for going inpatient. You're TRYING, and as long as you're trying, you've got chances for SUCCESS. None of this is your fault. You didn't ask to be in this long cycle or have this disease. As long as you're doing the best you can to work with everything, that's all anyone can ask, and that's not failing. I happen to remember having this discussion way back when, and I seem to recall that your family doesn't want to trade you for anything. They love you, and they want you, no matter what kinds of migraine ick comes along with the territory. You're their person.

Droolie's right. You are not a failure if you choose impatient treatment. I finally had a doctor mention it to me but she made it sound like it wasn't something I should want to do. Which I guess I don't want to do it, but I'm so frustrated with the way things are at this point that I don't know what else to do.

I'm glad your DH does for you as my DBF does for me. We all need the extra kick in the backside once in awhile. Especially because we tend to think about our families/work/school/whatever over ourselves.

I hope the steroid pack is more successful for you than it was for me. I'm glad your doc is supportive and trying different things.

and

Meli

Hi guys,

Laura and Peggy, thank you so much for your happy thoughts and concern! I really do appreciate all of your support. right back atcha!

Droolie, it's hard for me to remember that ALL modes of treatment are part of the "trying." Sometimes it feels more like "giving in" to me. Thank you so much, too, for the reminder about my family--in my head, I know that they wouldn't trade me in! But I sometimes (often?) lapse back into feeling guilty again. Especially when I have a bad run. They've had a long year with me--all sorts of hospital stuff with the 3 surgeries for the stimulator implant. I think they'd like to not have to think about doctors and hospitals for a while.

My doc is new now, so the hospital I'd have to go to is also new. I'm sure it'd be different than last time. But I'm absolutely, completely terrified to try! You know how some people are afraid of the dentist? Or high places? That's me an inpatient treatment! I'm just so scared of the whole process! And it also makes things tougher that my HA specialist is about 6 hours away. I'd have to leave my family and be there by myself for several days.

Meli, I know my doc doesn't want me to choose inpatient care unless I really need it. But, quite some time ago, he recognized that I really could be a candidate for it at ANY time! I think he trusts me to know the severity of my symptoms and to let him know when it all becomes too much for me. If you do decide to go inpatient for your care, I sure hope it brings you speedy relief!

I think my issue right now is just not knowing WHAT to do! I recognize that I have migraine all the time, and I'm not sure about when to seek extra help and when to just keep plugging along. I think I'm treading a fine line each day. And I don't really feel like the 3-day rule fits for me. I can't keep calling the doc every 3 days! He'll think I'm nuts! But I don't want to be ignoring symptoms that are increasingly worrisome. I notice that my "tinglies" in my arms and legs become more pronounced with a long migraine. And my vision trouble and droopy eye bother me much more when I've had several days of high pain. So I guess I'm trying to figure out when to worry and when to just keep going and assume it's my usual junk!

My doc has basically told me to call if I've exhausted all of my home options and still am in high pain. It's all pretty subjective, I guess. Sometimes I wish I had a simple flow chart to follow to tell me EXACTLY when to seek doc/ER help and when to just ride things out.

Despite this struggle, my stimulator is a helpful tool. Although it doesn't alleviate my symptoms, it does make them manageable some days. But it's a lot like a pain pill. It doesn't abort the migraine. it just covers up the symptoms so I can relax a bit and hope that things pass. I am really happy with the stimulator. I just wish it brought more relief to the front of my head and my jaw...

I'm keeping my fingers crossed that the steriods are going to work. I'm on the fourth day of the highest dose. Another few days and I start to decrease. Lack of sleep and nervousness are still bugging me, but they'll be worth it if my head pain comes down.

Thank you all so much. You're such a wonderful bunch!

jenny

I hope you're doing better Jenny. I get stuck in the same rut you do...I have been through 2 steroid packs since the last week in September.

I have to say though, considering all you're going through, I'd likely break down and take the inpatient option. I was just almost there myself. I've never been inpatient though but I hate just getting an IV at the doc's.

Whatever happens, we're here for you.

Hi jenny,

This current Migraine cycle really needs to be broken by whatever means you have access to. No guilt, no worries, just take care of your head. Of course, that is so easy to tell you to do that!! But really, you and your family aren't benefiting from you right now being in pain all the time, so it is worth a shot.

Please forgive me if this is a repeat.....have you been tested for IIH??

Just thinking of you.

It seems like you still need a break from this cycle. Taking care of yourself is teaching your children to take care of themselves by example.

Let us know how you are feeling.

Liz

Leeloo, Nancy, and Liz,

Thank you so much for looking out for me!

Leeloo, I'm so sorry to hear that you go through these lousy streaks, too. I don't know how it affects you, but I know that I have a tendency to feel really down and depressed when the pain goes on for too long. I've been thinking of you as you go through your PFO process. I saw your recent post about another surgery in your future. I just wanted you to know that I'll keep you in my prayers! Check back in when you're able to share more info!

Nancy, no--I haven't been tested for IIH. My doc and I have discussed it in the past, but everything kinda got put on the back burner when I had a chance to participate in the stimulator study. (All of my meds, etc. had to stay the same for several months before and after the implant was placed.) I'm due to go back for another doc's visit, and I'll talk with him about it again.

Liz, thank you so much for the reminder about my kids. You're right--they really do benefit from seeing their Mom be strong and seek out the help she needs!

Update--My head pain is finally at a lower level today, so I'm feeling a little more optimistic. I'm sure hoping that things continue to get better.

The guilt I talked about before comes from BOTH family and $$ concerns. Any hospital support (whether ER or inpatient) places a very large financial burden on my family. Our insurance is crummy, and we have quite a bit of debt from all of the hospital help I needed earlier this year (3 surgeries for the stimulator and 1 to remove my gallbladder). The stimulator procedures were part of a clinical trial, so many of the bills were covered. However, we are responsible for the co-insurance portions (still adds up to many, many thousands of dollars). Also, I fly to and from my doc's office each month, which also adds up to quite a bit of cost. It's hard for me to choose to heap more medical expenses on top of those I've already created!

So I go back and forth when I have lousy times. Part of me knows that I need to seek additional medical support, but the other part of me wants to just hang in there a little longer, hoping for a solution that won't cost tons of $$ and time.

And I guess I need to talk with my doc further about when it's absolutely necessary for me to get help to break a cycle of high pain. I think it'd be more clear for me if I had actual migraine-free days so I could identify a break in a migraine. Since my migraines go on all the time, I don't really know when to worry about status and when to just keep moving along.

I sure do appreciate you guys. You're the best.

jenny

Hey there,

Not to be an IIH lunatic, but intractable "headache" is a symptoms of it. Enough said I know.

Hang in there, sweetie, I'm thinking about you