Migraine

I called my neurologist (Noran Clinic Minnesota Headache Center) and explained to his nurse a few things I needed help with. I told her how my Keppra was working (not so great), I asked her to ask my neuro why he never told me about status migrainous. I've seen him for 6 years and he has never explained this to me....even though I have it all the time and it can be dangerous. The last thing I needed help with was the migraine I've been developing all day long, due to my period. I get ice cold hands and feet, a frozen nose, my right nostril runs and it starts out as a 2 in the morning and turns into an 8-10 by evening. I take atenolol, celexa and Keppra, but today I need help with the severe pain. I asked for a few Darvocet until I can see the nurse practioner this Fri. I also told her that Darvocet and prescription Naprosyn taken at the same time, take a 9 down to about a 7....not a lot of relief. I told her that there were 32 people waiting in the ER (I called) and that it was almost impossible to sit in the waiting room with the severe pain. She told me that migraine patients rank down at the bottom in the ER and aren't treated very well. I asked her which metro hospital would be the best and she said they are all bad...as far as treating migraine as a priority. I asked what I would be given and she said it's up to the ER that I go to.

So she called me back after talking to my neuro and said that he wouldn't give me any Darvocet and to go to the ER if I wanted to. Even though she told me how bad and long the wait was at the ER. Then she told me that my neuro told me to speak to the nurse practioner tomorrow. I said my migraine will be out of control then...she said sorry.

I thought about this for a while and realized what a kick in the face it was. I called back and left a message on the nurse's voicemail. I tried not to cry...but I eventually broke down. I said," I am not mad that you didn't give me a few Darvocet to get my until I see the nurse practioner on Fri. I'm upset and feel helpless. I don't understand why Dr. Golden can olny see me once a year and he won't even take the time to call me back. I have never known anyone with worse hemiplegic and basilar migraines than me...except my sister and her daughter. I actually just picked her up at school last week (she's 13) and most of her vision was gone and she had a numb hand." I also said, "I do everything that you want me to do, yearly MRI/MRA, EEG, myofascial release (I paid about $500 out of pocket because insurance didn't cover it and drove an hour to get there), infusions, tried Topamax, Gabapentin and Keppra, see the N.P. once a month at least, keep a diary and avoid triggers. I don't know what else you want me to do?! You tell me how terrible the ER is and yet tell me to go there instead of giving me 2-3 pills so I can survive until Friday. I am trying to raise 3 children and all my kids are going to remember is Mommy in bed with her head under a pillow. I don't know what you want me to do...but today was a real kick in the face! " I was crying by now.

I feel sooooo helpless and I feel like I limp through life without anyone who really cares! Please tell me where I can go in the this country where someone will help me!!!! This is no life!!!

Aww, Miriam, I am so sorry to hear that your neuro wasn't much help today. The nurse is right that migraineurs are usually at the bottom of the ER priority list and are generally not treated very well at all. Do you have an urgent care clinic near you? Those are also an option if you don't want to go to the ER, though your insurance coverage may be different. Teri has an article about this on her other site: Headache or Migraine Emergency: ER or Urgent Care?

Please do get yourself some medical attention, even if it means dragging yourself to the ER. We all know how awful the ER is but letting the migraine go really can be dangerous.

Once you're feeling better and have the energy to start looking for a new doctor, why not start with our list of headache specialists? Patient Recommended Migraine and Headache Specialists All of the specialists in our directory are listed because of patient feedback, and they specialize in migraine and headaches. Neurologists can be good (or not so good), but they have to be knowledgeable about many diseases. Especially with one of the more difficult to treat migraine types such as yours, a headache specialist will really be beneficial to you.

In looking at our list I see that our specialist in MN is at your headache clinic - Dr Mary Jane Chaisson - have you seen her before? Would it be possible to consult with her? If not, please do consider traveling to see one of our other specialists. A lot of our members travel far distances, even by plane, to see their specialists. Just remember that you deserve the best medical care you can get.

Take some deep breaths and try to relax and get through this migraine. You did a great thing by posting here. Let us know what we can do for you. We are all here for you, always - just remember that!

Thanks for the reply and caring. Dr. Mary Jane Chaisson is another neuro in the same group....I even think she has the same nurse as my neuro. Actually, I called the on-call neuro in the middle of the night once ( I'm pretty sure it was this lady) and she said," What do you want me to do about it?" It's so awesome that's this is the best in the metro!! Maybe Mayo has someone? I'm going to check right now...

quote:

Originally posted by MaxJerz:
Aww, Miriam, I am so sorry to hear that your neuro wasn't much help today. The nurse is right that migraineurs are usually at the bottom of the ER priority list and are generally not treated very well at all. Do you have an urgent care clinic near you? Those are also an option if you don't want to go to the ER, though your insurance coverage may be different. Teri has an article about this on her other site: Headache or Migraine Emergency: ER or Urgent Care?

Please do get yourself some medical attention, even if it means dragging yourself to the ER. We all know how awful the ER is but letting the migraine go really can be dangerous.

Once you're feeling better and have the energy to start looking for a new doctor, why not start with our list of headache specialists? Patient Recommended Migraine and Headache Specialists All of the specialists in our directory are listed because of patient feedback, and they specialize in migraine and headaches. Neurologists can be good (or not so good), but they have to be knowledgeable about many diseases. Especially with one of the more difficult to treat migraine types such as yours, a headache specialist will really be beneficial to you.

In looking at our list I see that our specialist in MN is at your headache clinic - Dr Mary Jane Chaisson - have you seen her before? Would it be possible to consult with her? If not, please do consider traveling to see one of our other specialists. A lot of our members travel far distances, even by plane, to see their specialists. Just remember that you deserve the best medical care you can get.

Take some deep breaths and try to relax and get through this migraine. You did a great thing by posting here. Let us know what we can do for you. We are all here for you, always - just remember that!

Hate to tell you this, but nobody at the Mayo has ever been recommended to us. Plus, I've known several people who tried to get appointments there and were turned down.

I'm SO sorry you're in this position. I've been there myself, and it's really horrid. We so desperately need more specialists. There isn't a single one in my state. I either drive 8 hours to Philadelphia or fly to Dallas.

Keep us posted?

quote:

Originally posted by Miriam36:
Thanks for the reply and caring. Dr. Mary Jane Chaisson is another neuro in the same group....I even think she has the same nurse as my neuro. Actually, I called the on-call neuro in the middle of the night once ( I'm pretty sure it was this lady) and she said," What do you want me to do about it?" It's so awesome that's this is the best in the metro!! Maybe Mayo has someone? I'm going to check right now...

Ohhh, Miriam, I'm so sorry you went through that from Virginia to Minnesota. Did you go to the emergency room?

I travel across country to see a specialist too. I felt it was time for me to see someone who specifically treats headache and migraine pain.

I hope you are feeling better today.

Still no call back from my neurology clinic. I left the message yesterday....3 minutes after hanging up and left the message I described above. They don't care or are ignoring me....why would they do this?

There are 4 doctors in the headache subspecialty group at Mayo in minnesota. They treat these problems....
Benign intracranial hypertension
Chronic daily headache
Cluster headache
Complicated migraine
Glossopharyngeal neuralgia
Hemicrania continua
Hypnic headache
Ice pick pains
Migraine

Migraine with aura
Migraine without aura
Migraine aura without headache
Pseudotumor cerebri
Tension-type headache
Trigeminal neuralgia

Doesn't seem like a migraine specialty clinic!!!

quote:

Originally posted by Teri Robert:
Hate to tell you this, but nobody at the Mayo has ever been recommended to us. Plus, I've known several people who tried to get appointments there and were turned down.

I'm SO sorry you're in this position. I've been there myself, and it's really horrid. We so desperately need more specialists. There isn't a single one in my state. I either drive 8 hours to Philadelphia or fly to Dallas.

Keep us posted?

quote:

Originally posted by Miriam36:
Thanks for the reply and caring. Dr. Mary Jane Chaisson is another neuro in the same group....I even think she has the same nurse as my neuro. Actually, I called the on-call neuro in the middle of the night once ( I'm pretty sure it was this lady) and she said," What do you want me to do about it?" It's so awesome that's this is the best in the metro!! Maybe Mayo has someone? I'm going to check right now...

Miriam --

I'll add my second to a couple of things. First, go to the ER or Urgent Care NOW if you haven't already. Second, traveling to see a specialist is worth it. I started seeing a specialist in December. I fly to get there -- it would be a hard 8-hour drive otherwise. My local neurologist, who is a general neurologist with a strong interest in migraines, wasn't very confident that she would know a new way to treat my migraines, but she changed one of my meds, added two more, and gave me an entirely new way to treat my pain.

You might have trouble changing doctors within the same clinic. Some clinics don't allow that: I've seen that happens with friends. The reason wasn't explained.

Sometimes the doctor-patient relationship just doesn't mesh. It sounds like you need more intensive help than this doctor is set up to give.

I've had a great experience the last time I went to the ER. In and out in two hours, and I left pain-free. And my Urgent Care (walk-in clinic) was good the last two visits. Not a long wait -- less than an hour. That's good for that clinic. They gave me Toradol and Phenergan, plus a presription for 6 Mepergan Forte (demerol) in case the Toradol wasn't enough. It wasn't, and I was grateful for the Mepergan.

You might call the ER back, and check with the urgent care clinic too, and ask when a good time to come usually is. And be careful of the flu. My mom volunteers at the hospital, and she is usually in the ER. But she's been working in the Intensive Care waiting room the last 3 weeks because of the flu.

I hope things get better!

Gretchen in Mississippi

I'm sorry that for whatever reason, the doctor won't at least call you back for peace of mind, or to offer any explanation as to why things are going so badly for you right now, and why he's unresponsive in general. Perhaps he's at a loss for what to try next. Some doctors have a hard time admitting this. I'm sorry you're taking a beating in spirit, too.

I know it's not really what you hope to hear, but if your doctor isn't going to provide any care between now and Friday, when you see the NP, then the ER is really your best bet. You still need to do something, and get seen. None of us blame you for not wanting to go there, but we want you to be safe, okay?

Miriam,

Droolie said it just perfectly...

Know that we are thinking of you and sending you lots of cyber hugs!


Please take that step and get some help!! You don't deserve to feel this rotten for this long...

jenny

Millsy, you had a horrible ER experience. You shouldn't have been made to wait and the ER doctor should've called the neuro.

Hearing stuff like that steams me.

Millsy, Oh my goodness the ER gave you.....
reglan, toredal, benadryl, and morphine....how were you even able to stay awake enough to breath!? I can't believe the Doc wouldn't even call your Doc. You'd think he'd want to at least hear what he had to say....almost sounds arrogant to me!

Miriam,

Everyone has already said what I would have said...so I will just add a

Hang in there and take care of that head....

Oh Miriam,

This just flat out stinks! We are here! I'm just stopping in to add a to the pile!!!

I hope you are feeling a bit better!!!

Please keep us posted!

UPDATE.....

The neuro nurse called me back later today. She told me that she had heard my message the day before and that there was nothing she could do at the time because my Doc already gave his advice for me. She said she talked to the nurse practioner and was told that I could try Butalbital/Acetaminophen pills until I see her on Fri. So today I took Advil and 1 butalbital pill at around 5 p.m. My migraine started the day before and so it was pretty bad today at 5 p.m. (that's why I needed something yesterday...before it was out of control!) Anyway, it did help my pain a bit. I think it would have worked better if I would have taken it when my pain was less severe.....Kind of like putting out a forest fire with a bucket of water!

At least I got a call a day later....but I still think it's bad care for a Headache Center.