Well things could have gone better....

I had an appointment with my neuros office today. Things have been horrible lately and I felt awful today. Had a bunch of very noisy kids in the waiting room and waited over 1/2 hour beyond my scheduled appointment to see the PA.

At this point, just wanted to go home and not be there and started getting emotional (I do when I have a bad M). She was very nice about things. Wants me to try the vitamins/supplements route and are changing the triptan as this one wasn't working. Then she went to check with the neuro.

Came back and said something to the effect of any questions. Well I completely lost it then. I asked how am I supposed to cope. Things are so awful and can they give me anything for the worst pain days - just to make it through. The response is that pain meds don't help, and only make the situation worse. Uh huh - sure they do and I said that was garbage. At this point she went and found the neuro.

He then threatened to have us part ways as he can't deal with someone who's got that attitude. I asked how am I supposed to cope with this. I've been at this 7 months and am worse off now than when we started. I am rarely getting to work and have no life. He then tried to say that because I'm off preventatives at the moment, that's why I'm worse. Don't believe that for a minute - I think I'm worse because he's been messing with my brain chemistry.

He did say that there was an option for a steroid pack for the days that nothing is helping. I said as long as there is something there that can help, I will keep trying his way. Oh and he did say that he's helped people worse than I am...I have no freaking idea how that can be (other than SM - she unfortunately takes the cake). Frankly I don't trust him any farther than I can throw him. He burned that bridge a while ago.

In retrospect, I wonder if I should just quit. I'm afraid if I become difficult, they'll note it in my chart and I'll have trouble if I try to go elsewhere. He made it clear that it is his way or the highway and that he will not deviate from their set treatments. But he is letting me do this round of "preventatives" my way and see what happens with s/e. Not sure that's a good sign.

Thanks for letting me vent. So frustrated with the whole mess.

Vent away Becky, know how you feel.
Felt pretty much the same after my visit last month.

So sorry it is such hard work and mostly for nothing.
What a crime it is to be ill it seems

P

I'm so sorry. It's frustrating when they don't work with you. It's so unbelievable when they think we are just supposed to deal with this pain and frustration, and without an "attitude"!

My neuro is being picky about what she wants to treat. Even though the latest info on Fibromyalgia is that it is neurological in origin, my neuro won't take that into consideration when treating me. She wants my GP to keep treating it and my GP wants the neuro to take over. It's so frustrating. I'm in pain from either migraine, Fibro, and TN every single freaking day.

I'm seeing my GP tomorrow about the pain in my legs and feet. I know she going to want to know why the neuro isn't treating me and the neuro won't as she doesn't consider it nuerological. ARRRGh! Why are chronic conditions so hard to get treated?????

I hope the steroids help.
((hugs))

Oh we aren't there yet. But I may be quitting any way. Just went to pick up the prescriptions. Can't afford them. I about keeled over when I looked at the tags $55 for 3 prescriptions that may last a month and 2 are a trial to see if they work. Can't justify it. I'm on a set income and have no way to get a second job to afford them.

Have a call in to the neuro. Basically said that he's going to have to try something else as this isn't possible. If he won't work with me, I'm going back to my gp. At least I know he'll allow me to have pain meds and will work with my budget to get things I can afford. I don't care if they don't stop, just so long as I can get back to my life (even if I have sunglasses and earplugs).

Thanks for the support.

Hal, so sorry to hear your story too.
It does seem quite a few of us on both sides of the pond are ending up back at our GP.

Becky, I wish you could switch to the neuro we saw at your clinic. I really thought she was excellent and so nice. I wonder if she would better listen to you.

Cheryl

Cheryl,

Wonderful thought but I think it might be a lost cause. They all have the same philosophy and I don't think I'm going to get any farther with her than with him. In some ways, it might be better because of the comprehension. I get the impression that he just doesn't care - he doesn't pay attention to what's been tried and the reaction. He relies on me to make that call.

I put a call in about the Rx because I can't afford it and am waiting to hear back. If he won't budge on it, I'll go back to my gp. I will give the naturals (ie Petadolex, magnesium, CoQ10 and B2) a try and see if that works. I know I can get triptans from my gp and he will work with my budget on that and will actually give pain meds. I got the fioricet from him and will just ask that we either continue with it or that we go to something just for the break through pain. I also will contact Dr. W and see if he would be willing to work with my gp. Just as a consultant as I got no where with the neuro department here. I don't know if he'd be comfortable with that but it can't hurt to ask.

Thanks for the thoughts.

Becky

Becky on the non drug preventatives. Spoke to our migraine action yesterday.
They say there is much better evidence for Butterbur than any of the others, she suggested I start with that.
She also said just check the no toxins and otherwise they are pretty much the same.
They are going to suggest to callers that they try the Swansons one because the price is so much better.

It's totally you to you where you start and brands of course.

Good luck.

Don't worry about any doctor notation about "bad attitude" in your records. You can switch docs and they won't know who your previous one was. Some specialists will send a report to your PCP. And even if they request your previous records you can make them edit out anything about confrontations or conflicts. They new HIPPA laws allow patients to in some cases edit your medical records. Any notation about conflict would be non-medical and detrimental to future care. Tell them to remove it or you file a HIPPA complaint.

And trust me, no doc or clinic wants a HIPPA complaint filed against them. I was asked to leave a urologist clinic last year. They never even contacted my PCP about the conflict. Not that she would give a rip any way.

We all know that the difference in care between docs can be night and day. Just from what you have posted is enough to leave that clinic. Once you butt heads it can only get worse in most cases.

Hope you find a good one and get some relief. Don't give up! I came close several times and my wonderful wife got involved. Twice she switched me docs and then told me later.

Brent,

Thank you so much. I had no idea that they couldn't do that or that I could get it edited out. That's a relief.

I think that you are right - there will always be a weird tension between the doctor and myself and it's better to just quit. I'm going to wait and see the response I get tomorrow but then make an appointment with my gp. I think what I need him for he can handle and I think he'd be rather disgusted by the situation. I really don't need much from him, just a triptan, compazine, and "evil" fioricet or something in that class for pain. I could even take tylenol or advil and probably be fine.

My mom and I have been chatting and we looked at Petadolex and she's really encouraging me to try it and give it a bit of time. Seems like a better solution than some of the other stuff and if after 4 months if there are no improvements, Anna's Mom posted something in another thread that I think might be a possibility. My aunt takes clonazepam for her essential tremors and it might work for my M. I know someone else had success with it as well. Not hoping for a miracle but I wouldn't mind trying something with little to no side effects for a while. And have plan B if that doesn't work.

Thanks guys.

Becky

Off the subject a bit but weren't you due to get a new pup soon? Any pics?

Becky, I have a feeling she won't prescribe pain meds and the like--never, ever to anyone! But it seems like you have so much conflict and stress with your current guy. I just thought she would be more "zen-like" (that's my friend's favorite way to describe her favorite docs, LOL)!

I like the zen-like, calm doctors, and I really dislike arrogant ones. That's why I suggested a change to her. She had a demeanor I really related to.

I believe you can see Dr. W--it's just that he can't prescribe pain meds. But I imagine he will be willing prescribe other meds, and he is a great listener. And zen-like! Look at Char's success with a cheap antidepressant--how he helped her right from the start.

I hope you get some good help soon!

In your corner...

Cheryl

Dr. W is a very good listener. He and his staff are quite empathic. There's a possibility he would work with your GP.

A couple weeks ago I had to see him without an appointment, I called the office sobbing uncontrollably and not knowing why. They got me in that day ( after a long three hour drive) and he immediately took me off the Chantix I was on and cut back on the doxepin.

When I called back this week to check in nI explained I was somewhat better, but still very emotional and he gave me some Xanax for short tern use to get through the wedding and get the other drugs out of my system.

Once the chantix is out of my system I want to go back on the doxepin as Im having great success with my m's with it, but we have to rule out if it's making me overly emotional. I swear, if there's a little inkling of a side effect I will get it.

Hi All,

First of all, please get a new neuro or go back to your GP. I have been dealing with this disease for 12 years now and have seen a ton of doctors. I have heard the pain med speech more times than I can count. However, in your case something to get you through is warranted. If you need to talk to your GP, please do.

Also, if this guy can't treat you well, I am pretty sure he would freak after one look at my chart or me.

Pain free daysm,
sailingm

Thanks Ladies.

I'm waiting for a return call this morning then I'm making an appointment with my gp to discuss this and see what he's comfortable with. I didn't think that my request was unreasonable and if the neuro can't deal with that then that's the end. I ended up taking some fioricet last night and after it kicked in I felt a whole lot better.

Am just going to keep my options open and see how things go and I really appreciate the support from everyone.


Brent - I do have a new guy. I've had him 3 weeks now and am remiss in getting pictures posted. I'm actually at work today and have a meeting in a few minutes but will see what I have on facebook that I can post here. Otherwise I'm doing a tournament this weekend and will snap a few then.

Becky

hey,

sorry to hear about your appt. i will probably pm you today or tomorrow. as i think we go to the same clinic.

i think brent gave you some good info. there. i have had problems worrying about my file too. one dr. at michegan head pain and neuro. inst. really messed up my file. a lot of emotional stress for me worrying. probably try to have it edited as brent said but his other points about the file etc. were valid and true.

you do not need extra stress with your life. esp. from your neuro. people who have been sick long term should not have to follow the same m. regimen as "newbies" i mean with pain meds, abortives and preventatives esp.

i feel really bad for you as i have been in your shoes, many times and feel bad when i get emotional. but, where else can you go when you are feeling hopeless and getting no hope from the people who are supposed to understand.

i got the same butterbur , coq10 etc, etc talk with the p. a. last week. got all but the butterbur as pharmacy did not have it.

i think there is a list they go down and this list is pushing the vitamins, homeopathics.,

hang in there, there is nothing wrong with you. you are just in a bad situation and certain people are making it worse.

i hope you can get outside today and try to de-stress in this beautiful day.

rose

Becky,

Sorry, I've just first seen your post now.

I hope your GP can help with some pain meds--you need something to cope. Could the GP give you a referral to a pain specialist?

Keeping you in my prayers.

That neuro sounds horrible. I'm with you on my thoughts about preventatives, pain killers, etc.
None of the preventatives have worked for me other than giving me side effects that I had to balance out with other crap. Threw them all in the garbage. Fortunately for me, DHE works for an abortive and so far I can get pain meds. Both of these medications have come from my GP. Go figure. I don't know why the neuros are obsessed with preventatives and are leary about pain meds. My GP has been a lot better help for me than my neuro. Who knows what all those so called "preventatives" do to your body over a period of time, not to mention the cost. I would rather go with taking as few medications as possible, so that leaves out preventatives.

I did have a steroid pack after a car accident. It did work, so nice to have around. You shouldn't have to go through this stress. The neuro should be on a black list, not you!

Becky,
from my very personal experience I've learnt that I cannot be helped by a doctor that I don't trust 100% or who is not listening and caring enough.
I hate doctors who apply protocols to the chemistry of my body. I could do it. A robot could do it.
I need a PERSON who has a good medicine know how who helps ME as a person.
I am not a mass of cell that can be fixed through a standard procedure.
There many doctors out there who are probably not "famous" but who really help and give you hope.

Take care

Thanks for the replies.

When the nurse called me back, she seemed to think that the cost of the meds wasn't a problem. Well if you are on a fixed income it sure is (what I mean is I'm a salaried employee and with the M, can't really get a 2nd job). Not going to bore others with my money issues but it is very tight at the moment and I have a roommate who's decided she's going to be late with the rent.

The nurse humored me and talked to the doctor. He knocked down to 1 antidepressant (Effexor) which leads me to wonder...if he knocked it down to 1 was 2 ever really necessary? I also checked the s/e of it - not even going to fill it. It's not worth my energy to try it. I am going to fill the expensive triptan. I need that for survival and if that's the one expensive drug I have a month - so be it.

Ivy - you are so right and that's one reason why I won't go back. I don't feel like I'm looked at as a person, I'm just another patient to apply a protocol to.

Tecky - I took an "evil" fioricet last night and it alleviated the symptoms and allowed me to relax and I feel pretty decent today. Mild pain but nothing I'd take a pill for. The kicker is my gp prescribed the fioricet. It works for me and I don't plan on taking it all the time - just when nothing else is working and I'm ready to cut my head off.

Estree - I'm going back to my gp. He at least listens and while he may not know exactly what to do, he's not going to leave me in excruciating pain telling me to "hang on until the preventatives kick in". He's been my doctor for years and will always give me a set of options on what I can do. I also do have a plan on how to cope. I have things to battle the symptoms and I'm going to try the herbal route. I will also ask if he'd be willing to consult with an expert, that's out of area, if my own trials fail.

Rose - I know we have the same clinic. One thing to know about the PA is that she's new to the headache world. She said she's had years of experience in the pain world but headaches are new to her - she told me herself yesterday. So she may not be a whole lot of help.

And the supplements...you may not find butterbur locally. I don't know what your finances are but the PA did recommend 150mg/day of Petadolex. I looked into it and Petadolex is expensive, but Swansons offers butterbur for a MUCH more reasonable price and I couldn't tell a difference in content. If you look at the butterbur thread, Dr. Robbins has okayed it as an alternative for Petadolex. I intend to try the cheaper variety for 2 months, if no improvement, I'll try the Petadolex for 2 months before I totally write off butterbur.

And I disagree, there is something wrong with me - my head is malfunctioning. But thanks for the encouragement, you made me smile. And I'm off to play softball tonight so I will get out. Then I need to come home and kill a wasp nest on my balcony - EEP!

Thanks everyone - I don't know what I'd do without each and every one of you.

Becky, may I ask what dosage fioricet you are on? I am thinking of asking my nuero to let me try fioricet next - the triptans are losing their efficacy and I can't take stadol and still function, I need to keep the stadol for just when I've given up on the triptans, ibuprofen, etc. and need to use the rescue med. I'm hoping fioricet can bridge the gap between triptans and rescue meds.

I don't know alot about fioricet though, but I know alot of people on here use it with success. Thanks!

Bubbs,

Here's what my prescription bottle says as it's the generic.

BUT/APAP/CF50-325-40

Hope this is helpful. The drug is made of 3 - tylenol, caffeine and a barbituate.

Becky

Hmmm. I think that might be the only dosage it comes in. I found that same combination online on wikipedia. I think the dosage varies by how many one takes. I will ask the dr. when I get in there next (provided he prescribes it, of course). Thanks!

Hi,

sorry to hear you had trouble with your neuro. The last thing you need is to stress about your doc. I have tried every preventative there is in my 20 year migraine career. The only ones that ever helped are:

Lopressor 200mg: a cardio selective beta-blocker (asthmatics can take it too),
Cipralex 20mg: an anti depressant (very useful for those with social anxiety).
Amitryptiline 5mg: an old fashioned anti depressant (makes you extremely tired)

I take Lopressor and Cipralex on a daily basis as a preventative.
When I get a migraine attack I throw back an Imigran 100mg as well as Amitryptiline 5mg. Ice pack on the forehead, hot water bottle on the neck. This combination sends you to sleep for 24hours and once you wake up your headache is gone (hopefully).

Initially (for a couple of years) this worked wonders for me. By now unfortunately my headaches found a way around the medications, or I got used to them.

Doctors will probably not recommend this regimen, but if nothing else works ....

Love

P.

Petzi,

Thanks for the reply.

I've tried a beta-blocker, did zilch for me. I've been on who knows how many anti-depressants that only make things worse. And I can't do ami - I tried it and was totally non-functional with it. I have to work so that's not an option.

The only thing I may yet try if the butterbur and my other combo of minerals, vitamins is clonazepam. It's something I've not tried but I have an aunt who takes this for her essential tremors and I wonder if my migraines aren't a manifestation of them. I will not go back to my neurologist as he's unhelpful and not willing to work with me.

Hope you get good results from your surgery.

Becky