Migraine

I'm very worried about my mother. She's been having a horrible time of it this winter.

She has suffered from migraines (with aura) for decades, and they have gotten to the point where she has chronic daily headaches. She decided that enough was enough and to get some (hopefully) better care got a referral to a headache clinic and Hopkins Bayview. They started out by taking her off of fioricet which she was over using. That of course was miserable, but she was good-- and did not take any (and hasn't). Then they worked with her blood pressure meds (she already has high blood pressure) and added Lyrica. They also upped her dose of effexor big time. Still no change. They put her in the hospital for some DHE treatments, but those didn't help either. They sent her home and upped her dose of Lyrica. (she's on 400 mg/day and has major edema now)

The triptans are no longer working, even the newer ones. She tries them, but doesn't over-use them, she's being very careful and has spent a lot of time just suffering.

Other than her time in the hospital, and her doctor's appointments, she hasn't felt well enough to be able to leave the house since the beginning of this. She feels like giving up. Her pain is at a constant level of 8 and it's gotten to the point that there are no longer any breaks.

Last week, she was given Methergine by the doctor to take daily (3x day)for the migraines, but my father was concerned about her high blood pressure. They had trouble controlling it in the hospital with the DHE treatments. He left a message for the doctor because he wanted to discuss that before starting the methergine. The doctor has never called back. It's been a week now, and several messages have been left.

When I called my mom yesterday, she was in tears she hurt so much. She wasn't keeping anything down (vomiting-- all the anti emetics weren't working) and hadn't gotten any real sleep in days because she hurt so much. She is just at the end of her rope. She hasn't had a decent day in months. She feels like a complete failure and she can't deal with the pain anymore. I tried to convince her to go to the ER because this particular one hasn't ended for days and is just getting worse. She needs fluids at least but she refused. My father came home from work early to try to get her to go, so I hope he managed to convince her. I really, really hope she can get some relief.

My question is, what to do now? My father wants to try another headache clinic (maybe Philly) or a pain management doctor-- at this point, ANYTHING that might help. Getting the referrals is what is going to be hard.

My mom was trying to convince the neuro at hopkins that she would like to try an occipital nerve block or possibly botox (her worst ones start at the back of the head where the skull meets the neck, and that area is slightly swollen and sore to the touch-- I'm the same way) but he insisted on a couple months of the Methergine. But when questioned about it, he won't even return calls.

It's frustrating. I just want her to feel better, and I feel completely powerless to help. I really want to slap the neuro at this point. She's not just seeking drugs, she's tried everything! She's now on so much that she's having lots of trouble with the side effects! Tons and tons of pills... from preventives to abortives.... the list is so long...

My great grandmother (who is 93) is even worried, and is trying to help in her own way. She's now cooking for my parents and having my grandmother drive her over there to drop off a week's worth of meals every Sunday.

It's clearly time for a new doctor. Migraine Specialists. To not return a call after a week and ignore her questions there is no excuse for that. None. I've attached the list of the sites migraines specialist. That is a good start.

Your mother deserves so much more compasion and real treatment in her care, this just makes me so angry to read how she is being treated. You as her daughter must be beside yourself.

Please let us know if this list helps you find someone. Perhaps they can see her more quickly due to the acuteness of migraines.

Take care,
Cindy

It really sounds to me that your mom needs ER treatment at this point- I hope your Dad(or someone else) can convince her to go. This particular migraine has gone on too long without treatment. Please let us know what happens!

Valerie

I'm sorry to hear your mom is not feeling well.

Is she still taking Lyrica? Swelling in your hands, or feet may be a serious potential side effects of this medication. If her doctor isn't listening, she really needs to find a new one.

Sorry to hear about your mom. IMO she definitely needs another physician who specializes in headaches. I've found it amazing within my own experience how bad some "headache specialists" can be when it comes to being responsive to their patients. Sounds like she got one of those. The physicians listed on the site are there not only because of education but also from patient feedback which should give her a better chance of finding a good one.

I agree she really needs ER help at this point. Dehydration can make a migraine worse and she really doesn't need that at this point. Hope you won the battle and she went.

Tracie

I gave them a call on my break at work.

She wouldn't go to the ER, but he at least got her to go to a prompt care place. They gave her some fluids, toradol, reglan and sent her home w/ a few perkicet. However, she still has the darned migraine. She's not vomiting anymore, but she's still really nauseous. Dad works this weekend, and if she gets worse.... her butt is getting dragged to the ER. I don't care if her hair is done or not! (she will not leave the house w/o a full face of makeup, nice clothes and her hair done )

Dad is calling around today to try to get an appointment somewhere else-- referral or not. If he has to he'll find a way to pay for it on his own (w/o a referral, the insurance won't pay). I suggested the headache center in Philly, and he is going to check there and see how long it would take to get her in. He's also calling the primary to try to get a referral to another neuro or Philly and/or a pain center. Mom is not up to doing any calling around right now.

It's just gotten so bad. She's become distraught about it and depressed (she was not depressed before all this). But considering she's been through almost 4 months of constant pain, much of it excruciating, and being dismissed by the doctor, I'd be feeling hopeless and depressed too.

I'm hoping that someone can fit her in quickly!! I really would like to see her in the hospital for a couple of days to try to knock this particular migraine out, and then go from there with trying to find treatment.

Rachael - So sorry to hear about your Mom - I sure hope your Dad and you find a way to get her another doctor - fast! And get her to emergency care if need be. I hope things get better soon.

Well he did get her to urgent care. That's a start. And heaven forbid her hair not be done or make up not be on. Bless her for still even caring about that at this point. I guess if she didn't you'd probably be even more worried than you already are!!

Your dad seems to be moving forward in the finding a new doc. Keep us posted. And you take care too. You're dad doesn't need both of you down!!!!

Cindy

What a difficult thing to go through. Would your mother "buy" that she owes it to her family to go to the ER, in order to be there for the family as fully as possible? Sometimes people will do for others what they won't do for themselves.

Racheal,

I am so sorry to hear that Mom is going through this. Good for your Dad for standing up and getting a new doctor. And I am with you if you have to dragg her to the ER (make sure you bring make-up) get her there. Like Nut said, use guilt if necessary or articles from the forum, anything.

I know I said it in the tea room, but again, just know that I am thinking about your mom and you and sending positive cyber-vibes to all of you
Let us know how it goes. Hang in there and take care of you too!!

Dar

Just a brief update:

Mom is still in pain and feeling horrible. Pain-wise, it's been worse, but it's still at a pretty good level. (i.e. at best it's hanging out at a 6 on the pain scale) The office at hopkins FINALLY called back yesterday, 4/30. It only took them a couple of weeks to get return her (and my father's) phone calls. She has an appointment on Monday to discuss more options. She's at the point where she'll try just about anything to relieve the pain,and is open to trying still more preventives, but wants the current pain taken care of. She needs a break from the pain, it's been pretty much constant since January.

Their insurance does not cover Philly or the pain management clinic. My father is willing to find a way to pay for it, but my mother (who is the worrier, especially about finances) is not. My father is trying to set up an appointment up in Philly at the headache clinic anyway. She won't be happy about it, but he knows something needs to be done.

So, that's it for now. It's waiting until Monday to see if they'll do anything more. I hope so.

Rachael

I'm so sorry to hear your mom is still in pain. Somebody got to do SOMETHING for her.....

When did she start Lyrica? Does her increase in pain match her starting Lyric? Is swelling still a problem?

Have you seen these links?IV Treatment of Refractory Migraines andIV Lidocaine - Effective Treatment for Refractory Migraines in the Clinic?

What about a steroid pack?

Is she taking anything OTC everyday for pain relief? Sometimes we can unwittingly create another problem called Medication Overuse Headache by taking certain OTC and/or prescription medications more than 2-3 days a week. If we have MOH, no preventive on earth will work, period.
For more information, you can read this article: Medication Overuse Headache - When the Remedy Backfires

Let me know if I can do anything else, ok?

I'm so sorry to hear your mom is still in so much pain. Hurrah for your Dad though! He may need to just stand up to her and be her advocate whether she likes it or not. The Philly center is supposed to be really good, and $$ versus pain is an unfair equation. Personally, I'd go in debt to relieve the pain! My DH is my advocate, cause I can't communicate during a headache. He even puts his hand over my mouth when I start my babbling!

Get her a mirror and put her makeup in a portable bag!!!!!

Tracie

Rachael I'm so sorry your mother is still suffering so. Are you in the same city they are? Do you think it would be helpful to them and you if you went to the appointment on Monday?

Since she is alreay a John Hopkins patient, could she be convienced to go to their ER? As Tracie said, pack her mirror and make up and haul her in!! Though using the word "haul" to your mother probably isn't good . It sounds like that would be covered by the insurance and the, I use the term losely, neurlogist, is there. They would probably contact him, I would hope. Armed with the articles Nancy suggested perhaps you would get somewhere.

Again, I am so sorry.

Cindy

She went to her appointment and they are referring her to a pain management center while she waits to get into the Jefferson Headache Center in Philly. They also have to try to work out insurance issues because Jefferson is out of state and not normally covered.

Hopkins ER would be pretty useless. As a city hospital, she'd be bumped to the bottom in priority, so at best she'd have an 8 hour wait before being seen. It's a very busy, hectic, crazy and very unpleasant ER. You only go there if you really have an absolute emergency. It's so overwhelmed by people there for drugs, who have OD'd, have the flu/cold, plus the usual car accidents, heart attacks, shooting victims, etc.

I am hoping that she gets into the pain management clinic quickly, so they can manage her pain, and look for a better long-term solution when she goes to Jefferson.