Mad at my Neurologist

Every time I have a really big problem this guy is closed. There is no emergency number.
His line says to call your primary care physician (i have none) or go to the ER. I'm so angry.
I woke up today with a migraine which is pretty rare, but this week has been bad.

The reason it has been bad is because of my topamax refill. I got a different brand of generic.
Teva was my original brand, I switched pharmacies (Rite Aide is the evil of the world) and they
gave me Mylan brand. Two days after taking Mylan brand topiramate I started getting wicked
migraines again. Every night, now this morning I wake up with an ice pick in my eye! I'm
taking Fioricet w/ codeine but its just dulling the pain, and I'm taking twice the dose.

I want to google this man, find his home number and curse him for not having an emergency
number just so I can get a script. My pharmacy has the pills I need, all I want is those damn
pills. I need one piece of paper with some writing on it so I can get stupid medication that
will stop me from being in pain. How silly is this? I'm not even asking for pain pills. I'm asking
for my preventative so my life can return to normal.

I don't have $100 to go to the ER. I'm broke. I have deductables to pay for my RX's since it's
the beginning of the year so I'm already at my max from paying those, plus I know that
my insurance won't cover my early refill of topiramate again so I'm going to be stuck paying
that too. Worse case scenerio is someone (i don't care who) will put me on brand name and I'll
pay $90 and change for that. Great because then I'll be short on my rent, but I'd rather be short
then be in pain like this. I really wish I had a best friend that took topamax around the corner.

This no emergency number thing is enough to make me want to switch neuros. I had this problem
over Christmas time. I had a horrible M from the 23rd till the 27th and he gave me pain pills
that didn't work. I couldn't do a thing about it and suffered greatly through those days.

My mom's a nurse and has a few connections. I can't afford to be running around paying $50
copays for another neurologist when I know my own neurologist is going to want to see me in
a week or two. Hopefully she comes up with something before the day ends. She gave me
the number to her general doc but he was closed too! Without having my records I don't know
how much they will do for me. Eek. I sure hope she has a doctor friend somewhere.

Hi,

I'm so sorry to hear that you are having such a rough time. Most doctors have someone to cover for them when they are away. Do you know what hospital your neurologist is affiliated with? You can always call the hospital operator and asked to be connected either to his answering service or to the doctor who is covering for him. It is certainly worth a try. This way, you would be connected through the hospital and not the office. Furthermore, if yhou did go to the ER, they would probably consult the on call neurologist anyway. Check with the hospital firstl.

As to the different brands- you could call Rite Aid and ask if they carry the brand or if they could order it for you.

I am so sorry you are in so much pain. Do you have any abortives you can take? I know fiorinal is a stop gap measure, but at least it is helping some. Benedryl sometimes helps my headaches or at least lets me sleep a bit-might be worth a try.

I suggest you bring a letter to your next appointment and see if you can develop some sort of plan with the dr so that you are not stuck when he leaves town.

Pain free days,
sailingm

Its ridiculous that the nuero doesn't have an emergency service. On the rare occasions I've needed something from my nuero, and he's been gone for the day, I've gotten the answering service to get me the on-call dr., who called me back within minutes, and got me what I needed quickly. I'm sorry your dr. doesn't have a similar set up. Is he not in practice with another dr.? He needs to have a back up plan. The ER is not a back up plan, it's an emergency plan.

*hugs* If I lived around the corner, Gia, I'd bring you some Topomax. I have the good stuff too, non-generic. I'm sorry you have to suffer. I hope you can get this straightened out soon. I totally understand what you're going through.

I am in the UK and I get to see a Neuro an hour and a half away by appointment only every 6 months.
I have no way of contacting him at any other time, and he only does morning appointments which I have manged to miss 3 times. In the end he made a special afternoon one for me last time.
No contact with even your own GP after 6pm, weekends and holidays.
Not sure if this is typical for the whole of England, but I have never known any different except there used to be a Saturday morning GP surgery. Stopped about 5 years ago.

Not good enough....

Sorry you are having this problem. Switching brands can really make a diffrerence it appears.


My neuro refuses to practice telephone or email medicine ... if I want something from hi, I have to go see him ... 3 hours away, I am glad I am seeing him only once per month and that his office is in the world's best city - San Francisco.

Your tale makes me LONG for real healthcare reform. On Oprah yesterday, she interviewed Danish women - researchers say the Danes are the happiest people on earth. Free education and free healthcare and work stops at 4 PM so everyone can spend time with family. Danes ALWAYS eat with theri family around the table at the evening meal. they even let their babies sleep in strollers on the street with no one watching the babes - taking a child is unthinkable in Denmark.

Highly educated, healthy people in a low crime state where success is defined as being happy instead of being rich or powerful ... pretty darn cool. and situations like yours simply are unimaginable to the Danes. Perhaps one day the USA will be as civilized. I hope so. (And yes, their tax rate is huge! But they feel like they get their money's worth with 1 year paid maternity leave and 90% of salary unemployment benefits for 4 years.)

I hope you find relief soon!

Thank you Richard. It's a tough day. I'm lucky to have a computer that adjusts dimness to such a
low level to be able to come on and read everyones responses because they make me feel
a lot better.

I'm wishing I lived in Denmark right now, I probably wouldn't feel so hopeless. I can't wait for
tomorrow. It's gotta be better than today.

Dont want to burst anyone's bubble but Oprah might have been rose tinting a bit.
My best friend of 20 years is in 'copenhagen and she doesnt relate to those things at all.
As for Happy, they all drink a lot, it seems to be endemic in the culture.
Anyway, be careful what you wish for, I think as a disabled person she feels she would be better off over here or in the US...
Seems the grass does always at least look greener...

I think everyone in one way or another has seen neurology fail them. It doesn't matter what income level. If you are a complex patient, unless you are paying cash or your insurance company has a higher reimbursal, your care is dependant on the physician, not the country. And our taxes here in the U.S., plus something like AMT.....our tax rates are high. Add in state tax on investments you are getting hammered.

There is no utopian society that treats migraines better or worse--looks like the whole lot of us is generally not getting the best migraine treatment--even if we are, we are not getting better.

This disease has more to it than generalized healthcare--it is highly individualized and complex. Unless you have a physician and your own brain power to sort through all of this, it will be hard to make much progress.

Just one migraineur's thoughts.

I had one like that , he wanted the GP to handle me , I wanted the neuro to handle me.

Be careful with that fioracet, it worked okay at first but then I would get that sharp stab behind the eye like you metioned , and I started using more.

I only used a short time and for me it hurt several days when I stopped. This illness is individaulized and complex as porshe fan said.

Porsche Fan wrote:This disease has more to it than generalized healthcare--it is highly individualized and complex. Unless you have a physician and your own brain power to sort through all of this, it will be hard to make much progress.

Very true. And you need an advocate who can push for your needs when you're too ill to do it yourself--someone who is as knowledgeable about migraine as you are, is familar with the treatments you've tried, and who is willing to ask questions (e.g., spouse, parent, sibling, friend, etc.).

Even yet, it often feels like you take two steps forward and three steps back. Can be very discouraging.

Becky

I wasn't even aware there were different brands available. I too am in England and if I have a need to see the doctor urgently need to phone at 8.30. If you can get through you might get an appointment. I once tried arriving at the doctors at 8.30 but stood there at the reception whilst they answered all the phone calls that took the bookings. I got the last appointment of the day.

If the doctor needs to ask the neurologist anything he has to write a letter and it takes over a month for an answer to get through. I am strictly speaking not even on the list for a return appointment with the neurologist despite still having a need for follow up.

Don't get me wrong I think that the NHS does provide a good service when it comes to emergencies and obvious life threatenning illnesses. But I think that migraine is probably underated or it is an ilness that doesn't fit the system.

It is irritating for me to have to wait such long times to see anyone, especially when it is playing up badly, but I watched the neurologist when I spent all day going through tests. She sorted out people that had really bad problems, unable to perform basic functions as well as me, and I don't think she had lunch either, just went onto another clinic. I understand why I can't reach her easily despite needing to contact her. She is run off her feet trying to help everyone.

Not that this is of any comfort to us.

I did try paying privately to see a neurologist, which was a different experience in terms of getting through to him when needed, but he thought going to the main migraine clinic in the country would be the best treatment.

The main thing I have experienced is that everyone at some point has decided it would be better for someone else to be looking after me.

Hope you get the right meds soon and everything settles down.

Di

Im so sorry you are going through this. Yesterday I was hurting with a migraine and called my doctors office to see if they could call me in a prescription for Maxalt. Well they did but unfortunately my insurance won't pay for it because my prescription ran out and I need to be seen by my doctor first before they will fill it. I have an appointment monday but that doesn't help me now. I am feeling a little better then I did yesterday, but can feel the migraine starting in again. I feel for ya. I hope you feel better soon.

pen wrote:Dont want to burst anyone's bubble but Oprah might have been rose tinting a bit.
My best friend of 20 years is in 'copenhagen and she doesnt relate to those things at all.
As for Happy, they all drink a lot, it seems to be endemic in the culture.
Anyway, be careful what you wish for, I think as a disabled person she feels she would be better off over here or in the US...
Seems the grass does always at least look greener...

I hope this make you less discouraged about your own system.

I think they painted a too goodie goodie picture of Denmark for Oprah I saw the show....all the bad stuff wasn´t mentioned at all
work stops at 4 not for everyone
very few people eat dinner together too buzy
: not enough rooms at the psyciatric hospitals many sick people are sent home
hospitals very dirty to save money saw it with my own eyes
older people are not always treated right not enough rooms at the elder homes
i could go on

Not so great after all. In any case we have to live with what we have....hope it helps a bit.

I'm 1/2 Danish, married to a full Dane who came here at 16 with his mother, father and 3 siblings.

Oprah's show was WAY inflated.

Every family member, my side and my husband's side, has had health conditions that were treatable if they could have received faster more attentive care. They all died, heart issues, cancer, anyurisms sp??, etc. Very sad.

The taxes are extreme to say the least. If you are successful and making money, you are being taxed to high heaven. If you are successful and making money and for some reason the gov't is not getting enough money....they will CREATE a tax law in order to get more money from you. They did this to my husband's family and their several business'. They are all creative entrepreneurs. They had to come to the US to make it big.

It's awful, to me atleast, to watch his younger generation cousins who are having babies out of wedlock and don't have jobs and the gov't pays for all their needs........they have housing, food, childcare assitance....and DO NOT have to work. THEN they come to the US and travel all over with rental cars, airfare from the West Coast to the East Coast of the US....shopping and spending money all the way along. Where do they get this money???

An uncle....he's an engineer in DK.......he worked for 2 yrs, got 'stressed out'.....so they gave him time off in Spain, paid to recover for a month. When he got back to work all rested, his job is still there........but he's been gone so long that his workload is heavier than ever and he's stressed again. So he works 6 more months, is stressed and given a full retirement package. He now splits time between a home in the city and his beach house that he built. The travel constantly, both there and to the US.....they are here now for a family wedding and skiing.

It's just not all it's cracked up to be...."the happiest place on earth".

Oprah, and many other shows can slant things any ol' way they want to.

Just my up close and personal experiences with Danish life. Oh...........and I have 1,001 other similar stories, just would bore you to hear them all.

They do have great food though! And......they sent me one great husband!

I got the impression watching that episode of Oprah that they visited one group of women who were the Danish upper class (even though they said they do not have classes).

I suspect it would be similar to doing an article on a well-to-do American moneyed family. They didn't show the other side of life, like the homeless, ghettos or small-farm families who are struggling.

Not really good journalism.

Becky

I just had to put my two cents in. I live in the US and can't imagine that there could be anyplace with better health care than what I am getting. I am not rich by a long shot. I still believe it is the land of opportunity for those that want to earn it, which means hard work. I raised 5 kids with no child support all along having top notch insurance!! Maybe it is because I live in Minnesota, but I have friends on disability that own their own homes, get great health care (sometimes better than people working). I have no doubt there are bad neurologists out there just like there are bad people in every profession, but do not blame it on the US. I think they treat the poor very good (in Minnesota anyway).

For some reason there are people out there that are not getting what they need for what every reason. These people do need to be addressed. Everyone deserves good health care. This is being worked on right now so nobody slips through the cracks. It certainly isn't being ignored. The cost of health care has got to go down!! I agree with that. I just want those of you that do not live in the US to know that we do have great health care already for the majority and hopefully is only going to get better.

I also saw that Oprah. I've never been to Denmark but the way they portrayed it, I knew it was glossed over. They made it sound like paradise. Heck, everyone would move there.

Hopefully some of you on this forum agree with me. If not, move to Minnesota (and dress warm).
And if you do not agree, compare us with most of the world. I don't think you would want to live in a good hunk of it.

I finally contacted my office. I am completely thrown off by their response to me, not to mention
in pain and just frustrated. I tell them the situation and the receptionist clearly doesn't understand.
She tries to tell me that I must call the pharmacy and demand brand topamax since that is what
the script should have been. I told her flat out that the doctor never wrote DAW on the bottom
of the script. I should be on the generic and it is not the pharmacies fault. There are different
brands of generic! Does nobody understand that?

She didn't even ask me the brands. She gave me an attitude!! Telling me to go back to the pharmacy and demand they switch my pills. Are you kidding me? First off, it's still not their fault! Second, since it's not their fault I need a new script! Why in the world are you fighting me over a script for topamax? Do you seriously think I'm going to sell it to my druggy friends? Oh yes
they really want to pay me $300 a bottle to loose weight and become stupid. Are you serious?

I wait and wait for your office to open to ask this one friggin question and now you, a dumb
woman behind a stupid desk...a stupid receptionist..is going to give me an attitude? You know
NOTHING about this stuff, this is why they have doctors and NP's! Let me talk to them, not
you! I don't want to fight you on this, you don't have any idea what your talking about and
now you are going to portray what i'm saying to the doc all wrong. Thanks lady, what
a wonderful POS you are.

On top of it I say, "My insurance wont cover 25mgs. The only way I can get coverage is
if I get 50mg pills which shouldn't be a problem at this point since i'm taking 50mg during the
day and 50mg at night."
She says, "Well why wont your insurance cover it, we sent an approval! What's
the matter with them?! No. We can't do that. You can only get 25mgs. That's why you got
the approval."
"I got the approval because I was tirating up on the medication and needed the 25mgs. I don't
need that unless I want to go off of it. I don't want to go off of it."
"No, we got you the approval and that's that. I'm sorry, but if they won't cover you thats not
our problem."

Thanks for your concern and patience. Nice going receptionist, you just lost your practice a
patient that WAS going in every month to be seen. Nice job IDIOT!

Kind of like how Micheal Moore portrayed the Canadian healthcare system.....not nearly as peachy as he made it seem.

lovegia wrote:I finally contacted my office. I am completely thrown off by their response to me, not to mention
in pain and just frustrated. I tell them the situation and the receptionist clearly doesn't understand.
She tries to tell me that I must call the pharmacy and demand brand topamax since that is what
the script should have been. I told her flat out that the doctor never wrote DAW on the bottom
of the script. I should be on the generic and it is not the pharmacies fault. There are different
brands of generic! Does nobody understand that?

She didn't even ask me the brands. She gave me an attitude!! Telling me to go back to the pharmacy and demand they switch my pills. Are you kidding me? First off, it's still not their fault! Second, since it's not their fault I need a new script! Why in the world are you fighting me over a script for topamax? Do you seriously think I'm going to sell it to my druggy friends? Oh yes
they really want to pay me $300 a bottle to loose weight and become stupid. Are you serious?

I wait and wait for your office to open to ask this one friggin question and now you, a dumb
woman behind a stupid desk...a stupid receptionist..is going to give me an attitude? You know
NOTHING about this stuff, this is why they have doctors and NP's! Let me talk to them, not
you! I don't want to fight you on this, you don't have any idea what your talking about and
now you are going to portray what i'm saying to the doc all wrong. Thanks lady, what
a wonderful POS you are.

On top of it I say, "My insurance wont cover 25mgs. The only way I can get coverage is
if I get 50mg pills which shouldn't be a problem at this point since i'm taking 50mg during the
day and 50mg at night."
She says, "Well why wont your insurance cover it, we sent an approval! What's
the matter with them?! No. We can't do that. You can only get 25mgs. That's why you got
the approval."
"I got the approval because I was tirating up on the medication and needed the 25mgs. I don't
need that unless I want to go off of it. I don't want to go off of it."
"No, we got you the approval and that's that. I'm sorry, but if they won't cover you thats not
our problem."

Thanks for your concern and patience. Nice going receptionist, you just lost your practice a
patient that WAS going in every month to be seen. Nice job IDIOT!

I can feel you fuming from here!!!
I am so sorry! You have had bad luck with the receptionists and NPs at that practice. Fire them and get someone who deserves your trust and money!! My Neuro and his staff are all amazing and supportive and SO have my back when it comes to my meds. I'd be lost without them. So I urge you...shop around. Good docs (more importantly sometimes, receptionists and nurses) DO exist. and YOU my friend, deserve one

Good Luck! I hope you get this worked out!

I understand completely. When CVS came into the picture and my pharmacy changed and then my insurance changed at work, it took me several days to get a simple prescription because the pharmacy, doctor, insurance kept blaming each other on why it wasn't being filled. I finally got it filled and can't remember who's fault it was anymore because I have not had a problem since then "yet". I do remember it was for a drug that nobody wants to take anyway (including me), and they had to make such a huge deal out of it. I don't even think it was an expensive drug if I remember right. They could have given me a few while they figured things out (which they do now). It was a drug I had been taking all along, was in the computer, etc. etc. I was fuming at the time also. I don't know why some people just can't use common sense. I do at work all the time -- break rules when necessary if it is just "common sense".

I wish you luck. Someone is screwing up at your expense.