Migraine

Hello,

I just had an appointment with my neurologist yesterday which has left me feeling pretty hopeless. Brief history: I have had daily migraine headaches starting one year ago this month (September), when I had my first migraine at 35. A few months prior to the headache, in June, I had two episodes which I've been told by both my opthalmologist and neurologist are 'occular migraines' in which I experienced the visual disturbances associated with aura, along with temporary loss of peripheral vision, but no headache at that time. Because of the partial blindless bit, my neurologist says it is not safe for me to take triptans*.

So over the last year, I have tried a number of preventative drugs, in various combinations and at various doses. These are: Pamelor, Lexapro, Topomax, and Prozac. But now, after only a trying this short list - when the one I see here on My Migraine Connection is so long, even without triptans - he seems to be out of ideas. Granted, he did suggest beta blockers, but I have taken those before (to reduce signs of nervousness before giving a talk) and did not like the way I felt. I asked him about Adderall as a possibility because a friend told me an acqaintance with migraine had had success preventing his migraines with that. Also, my cheif complaint with higher doses of Pamelor were that they made me too sleepy, and with Topomax, too confused and fuzzy-minded. Here was a drug whose side effects I would welcome (I am a PhD student with 3 part-time jobs and freelance work). He poo-pooed that idea, said he had never heard of it for migraine (he is not a headache specialist, I should mention). But others have mentioned Adderall here as well...

Anyway - you are probably thinking 'Get a new doctor!' or 'See a headache specialist!'. I have an appt for one month from now with a specialist. But my neuro yesterday seemed to suggest the specialist wouldn't be able to help me any more than he is. I told him that the Vicodin, which I have been taking for almost a year now, has started not to be effective in lower dose (single pill - 5mg/500) and so I have started taking pill and a half. Bascially told me I can't take more than 10 pills per week. He said he could switch me to another narcotic, but that I might live 70 more years and I'd run out of options too soon if we went down that road too quickly. It makes sense, but what am I to do now? Just endure??? I have so much to do! It's going to be impossible with my head feeling like this. 10 pills per week means I can only take Vicodin now 2 days, if I want to get any relief. That's not too bad ordinarily - I usally alternate 3 and 2 days per week. But for how long before it's one day per week, and then what?

In other words, I am freaking out a little bit about the fact that headache appears to be a permanent fixture in my life now. Everyday, pretty much. My hope about finding a preventive that works is dashed. The comfort of knowing I could take vicodin on days I really needed to get stuff done and the pain was very bad is gone.

But worst of all, the doctor told me I need to find a job with no stress. Sorry, does such a job exisit? Have I stayed in school for nine hundred years to find a job that is uninteresting and stress-free? To me, the only job that is stress-free is one which you don't care about. That might be fine for people with kids and other interests, but I have, and will have, no kids and really feel I need to do something halfway meaningful. The realisation that this really is a disease and can be life-changing has come on slow for me, but I think it is finally hitting home. And I just want to cry. Has anyone out there had a period, measured in years, of daily headaches, who is now doing much better?? If so, I'd love to hear your story.

Sorry for rambling on like this! If you've made it this far, thanks for listening.

Jena

* As I understand / remember it: Apparently when this happens, it is possible that the optic nerve was involved. If the optic nerve was involved, and one take triptans, damage can be done to the optic nerve. That's what I remembered him saying originally, though on this last visit he sais something about the risk of stroke... In any case to be safe we must assume my optic nerve was involved and therefore must avoid triptans, says my neuro.

((Jena))
I'm so sorry you are having such a difficult time and do understand how easy it is to feel hopeless - as do most of the people here. There is hope - it can be just a very long process!

I personally think the most important thing is to find a doctor who you respect and who you think respects you and who won't give up - who will allow you to ask questions - who is determined to find an answer for you.

Yes, migraine is a chronic disease, and it is not something that will go away, but it doesn't have to be something that robs us of life or its significance.

I do think you should look into finding a migraine specialist. It always bothers me when a doctor says you don't need to see someone else. It's obvious that he isn't helping you, so I guess it's time to find someone who can or who you feel is working towards giving you some hope!

Look at the ticker tapes - you'll see people who have had some significant period without migraines. Read the success stories - they always help me when I'm down.

Cyn

Jena,
So sorry you're having a difficult time. Even if your neuro now doesn't think the headache specialist you have an appointment coming up with can help you, it's worth a shot to try it. There are so many preventative options out there. I know it's time consuming to find a combination that works. And some doctors seem to only use certain ones, and then they throw up their hands. But there has to be a doctor out there that can help you. There are also other medications out there that are used for abortives that aren't triptans, so you don't have to rely so heavily on your narcotics. Hopefully your new doctor will have more options for you in that department too.

I understand the whole 'job & stress' feeling you have. The new doctor I just went to see told me pretty much the same thing. I don't think a job without stress even exists. I was so frustrated when I left the doctor's office I wanted to throw things.

Best of luck with the new doctor and I hope they are able to find the right combination of meds that will help you live the kind of life you want to, even with this disease.

Meli

Jena--

You should definitely get a new doctor, which you know. I have to say, his comment to you about getting a job without stress is infuriating to me. I wonder, how many men does he say that to?? Call me suspicious, but I just don't think very many men have to put up with such rubbish.

Keep trying with the preventives. I spent about a year and a half working through different preventives, and with almost daily migraines. Essentially, it was only when I gave up and just stayed on the one that wasn't working a bit longer (beyond 2 months) that it actually started to work. My lesson from this is that, they are not kidding when they say it can take the preventives a long time to start working. Even though I, and my doctors, knew that all along, I am not sure we gave the first several drugs long enough for a fair trial. I know it is incredibly frustrating to keep going through this, but there is hope.

I definitely sympathize. I had my first migraine in my early 40s, and they almost immediately became close to daily. Now, 2 years later I am in a much better place, with only a few, relatively mild migraines a month. This took 4 doctors, and trying about 8 different preventives, which is actually pretty quick in the grand scheme of things. And, let me say that, while I love my job, it is not free of stress!

Hang in there...(and get a new doctor!).

{{{{{{Jena}}}}}}

-:¦:-•:*'""*:•.-:¦:-•*Hello!*•-:¦:-•:*'''''*:•-:¦:-•*Welcome to the family!*•-:¦:- •:*'""*:•.-:¦:-

Hello and welcome to our forum family! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start.

OK, now let's get down to business...

With all due respect to your neurologist, it doesn't sound like he knows as much about Migraine disease as you need your doctor to know. I'm glad ot see that you're going to see a specialist. Let me assure you that there IS a great deal that a specialist CAN do for you.

For one thing, a specialist will get you an accurate diagnosis. To simplify matters and make it easier for people to get information and treatment, doctors usually go by the gold standard for diagnosis, the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). Under ICHD-II, there is no diagnosis of "ocular Migraine." We do see it used, but doctors use it differently, so it really doesn't tell anyone what type of Migraine you actually have. You can read more about this in Ocular, Optical, and Opthalmic Migraines and The Type of Migraine Does Matter.

You may also find that specialists don't agree with not using triptans when there's partial loss of vision during the aura. For example: A retinal Migraine often includes total blindness in one eye, but triptans are not excluded from treatment.

As for the Vidocin, it's not how many tablets you take per week that's an issue. It's how many days a week you take them. You can read more in Medication Overuse Headache - When the Remedy Backfires. Once you get to a specialist, you're probably going to be surprised that they do everything possible to avoid opioids altogether because there's evidence that they actually make Migraines worse in the long run.

As for stress being a trigger, there's still some controversy, but I hate to see anyone accept that stress is a trigger without at least trying to see if they encounter triggers during stressful times that they either don't encounter at other times or they're only triggers when the body is stressed. The International Headache Society has removed stress from their list of Migraine triggers and put it on their list of exacerbating factors -- things that make us more susceptible to our triggers. I'd have sworn stress was a trigger for me until I kept a very detailed diary for a few months. More information in Is Stress a Migraine Trigger?. I hope you'll thoroughly investigate this as I think we do ourselves a real disservice by thinking stress is a trigger for us and not looking closely for other triggers during stressful times.

Whew! I didn't really mean to throw so much at you at once, but PLEASE don't think a specialist can't do more for you than your current neuro because that's just not true. OK?

Just one question for you -- it's sometimes difficult to know who the actual Migraine specialists are. You're sure the one you have an appointment with is?

You just keep reminding yourself that you're NOT alone, and there IS hope. OK?

Welcome again,

Hi Jena! I just wanted to stop by and add my welcome to the pile.

A great tool to bring to your Migraine Specialist is a Migraine Diary. It will be useful to track triggers, the effectiveness of medications, and any patterns to your Migraines and headaches.

Speaking of triggers, do you know what your triggers are yet? Mine are changes in the weather, poor sleep, not eating and certain smells. Here's some information on triggers that you can take a look at:

Common Migraine Triggers

Good luck at your appointment! Please come back and let us know how it goes, okay? You can also read this for some helpful tips:

Migraineur's Guide To a Successful Doctor's Appointment

Welcome again!

Hi Jena,

I'm Dutchess

I have had some of those doctors also. I'm in the process of changing mine also. What have done to help is I write down every experience I have that may trigger a migraine.

When I feel it coming what was I doing? What did I eat. Was it cold? etc... even stress. Then look for ways to combat it. Relax is a sign I have at work. I take a moment to look at it and take some slow deep breaths.

I also tooks some time to type out the blog 30 Things About My Invisible Illness (Migraine) You May Not Know
I love it. My co-workers now understand a little more about me and my condition.


Hang in there. There is lot of support here.

Dutchess

Thank you so much, all you wonderful people!! Thank you for your welcomes, your advice, and for reading my massive message in the first place! It is fantastic to be able to communicate with you all, and I really appreciate your taking the time to respond.

Cyn - Thanks very much. It is cool to see the tickers and to ponder the idea of a single migraine free day, let alone 10 in a row!!!

Meli - I am so excited to hear there are such things as rescue meds that aren't triptans, so thanks for the word! Also intrigued by Teri's information about the possibility that avoiding triptans might be unnecessary(though being extremely risk-averse, I am inclined to avoid them if anybody anywhere thinks they might have overheard someone say they were harmful sometimes!)

Also Teri - thank you so much for all the links I will definitely check those out. I must admit I find the idea of no vicodin (or a replacement that works as well) to be terrifying. Are there other pain killers that are not opiods that are not thought to make things worse in the long run? I am unable to take NSAIDs for stomach reasons, and neither Tylenol nor Fiorcet touched my headaches. I think my neurologist's idea of limiting me to 10 per week was to keep me from developing a tolerance too quickly, as there are a finite number of pain killers he could prescribe and I am relatively young, so we could conceivable run through them all too quickly. ? I think? Regarding whether the specialist I am going to see is a migraine specialist, I believe she is. She works with Dr. Mauksop at the New York Headache Center (he doesn't take my insurance, but she does). Her name is Dr. Remmes.

Annie - I hadn't thought about the doctor's 'find a nice stress-free job' comment from a gender perspective, but one does have to wonder how many men he's given the same advice! I felt infuriated myself, because I felt like he was dismissive about it; like it was no big deal. And I am very heartened to hear your story - particularly that preventatives that can take longer than even a few months to take effect. I'm trying for a second time to increase the amount of Pamelor I take. Last time I gave it three months I think - I found myself exhausted during the day, gained a bunch of weight I could not get off, AND my headaches were no better. But maybe if I give it a bit more time it will work, and I can just drink tons of coffee and get some bigger clothes.

Thanks, Laura, for the links you included in your post. I have headache diaries going back to the beginning, in various forms. I once read in a book on migraine which said something to the effect of, 'whatever you do, don't make a career out of your headache diary'. However I found myself doing just that at times! It was really hard not to. Still, I have a hard time finding triggers because my headache is ever-present, and there seems to be very little rhyme or reason to when it decides to flare up or calm down. Like you - not getting enough sleep is a sure way to ensure a flaring up and lots of noise - particularly overlapping noise is a sure way as well (good thing I live in New York, eh?). I don't know whether any of you have found this, but when I exercise regularly I find my headaches are the best behaved. The weeks I don't make it to the gym are usually the worst weeks. (or are other things going on in the busy weeks that are the source?)

Anyway. I'm blabbering on and on again. I'm so sorry! It's just so nice to be able to talk to people who can really understand what I am talking about. My husband actually had migraines as a teenager, so he gets it in many ways, but I think chronic, daily migraine is almost a different animal. A different species anyway. So thanks again, very much, for listening.

All the best,
Jena

Welcome Jena!

I can relate to the "what if they take away the one drug that works" feeling. As Teri said, it's not the amount, although we want to be careful not to take more than recommended, it's the amount of days we can take it.

I rely on vicoprofen a lot. I take it about 2-3 times a week since nothing else helps my Tension Headaches. I've tried other things, Ultram, muscle relaxers, but vicoprofen is the only thing that takes the edge off. I hate that! I wish I didn't have to rely on any meds - that I could take the occasional Advil for my head pain and be fine.

Luckily, I have found a great Migraine specialist that works with me and has options thought up before my current drug fails. She is always thinking 2 steps ahead.

I promise you, there are doctors out there that are very knowledgeable and also willing to work with you and help you. I went down a very long road of doctors before finding one that I not only like, but trust and respect. She was my last hope before having to travel a great distance for help.

I am with Teri on the stress thing. I don't think it's stress itself that causes Migrianes, it's how our bodies that react to stress that may trigger a Migraine.

Even as you stated - the complete list of preventives is huge. I believe it would take a lifetime to try each medication and each combination that could be tried. Yes, I know, that may take a very long time to do, but at least it means we have options when the medication we are taking currently doesn't seem to be cutting the mustard.

I see you are in NYC? You have quite a few options seeing as you are close to some great specialists (in NY and also CT or PA). It sounds like you are going to be seeing someone new? That's great! I hope they help you and you have much success! Please keep us posted on your new doctor - we are here for all of our members no matter what, so let us know how you are doing.

I have learned your best defense against this disease is learning as much as you can about it and educating yourself about it. The more you know, the better patient you become!

Welcome again! We look forward to learning more about you!

Well, hello there, Jena!

Personally, if I had a doctor that had run out of ideas so quickly, I'd be moving on. In my very humble opinion, your doctor claiming that other doctors, including specialists, wouldn't be able to help you any more than he could sounds very arrogant. He shouldn't be talking for anyone other than himself in terms of ability. It isn't his place to speak for others, especially doctors he doesn't know. You deserve better than that, I think, and it's good to hear that you've got an upcoming specialist appointment.

Almost a decade ago, I did have daily migraines, on top of muscle spasms and severe tension headaches, as well as other issues, primarily Graves' Disease and fibromyalgia. I know firsthand that it's a pretty ugly spot to be stuck in, particularly when I was working every single day like usual. Everything came along at once for me, and it was an adjustment. Reality hit hard and took a big, jagged bite.

It took all the German Stubborn Factor I had to get through all of it, but these days I do very well, all things considered. I still have my achy days, and some migraine days, but the bad days are usually down to just a couple a month of each as long as I diligently look after myself and respect my limits. Learning and respecting limits I think has been the biggest key to my success, I think. It can be a slow process to build life back into things, because you make adjustments every day, and you do have to roll with punches you don't expect in the process, but life is kinda messy. The process isn't always easy. I find it important to keep my sense o' hoomer, stay positive, and refuse to give up. I'm not going to lie and say I never have an icky day, when I might feel sorry for myself and my situation, but for the most part, I stay on top, and in control. Somebody's gotta drive, and it's my life, so I'm it.

I think it's perfectly fine to have a good cry and get things out. Heaven knows I've been there, done that, and burned the t-shirt. Sometimes you just have to blow the release valve and clear things before you can clearly take stock and move on. I had plenty of time to think on things way back when, since I literally crashed out on the living room floor every night because I was literally too physically exhausted to move. For awhile, it was a big dwell-fest. But after a bit, I switched gears, and decided that if I had all that thinking time, the least I could do was use it constructively. Once you've vented things out, it's easier to see new perspectives and see what you need to do. I used to vent and think aloud in all kinds of Moby-Dick-sized epic posts on the old forum, when that's what I needed. It gave me a chance to work things out, and build momentum to take action and move on. It paid off, too, as I'm in a position of much smoother sailing these days. So, yeah, if you're looking for confirmation that it can be done, I've done it. It can. And I wish with all my heart that you'll find the path that makes it all work out for you, too.

Jena --

I've been where you are -- and while I'm not a LOT better, I am better than I was. The main reason for this is having seen migraine specialist(s).

I think it's very unlikely that you will get pushed down to one day a week. But having two days a week -- it's taken me nearly five years to get reliable pain relief for two days a week. Most specialists seem to recommend 2 (or 3) days per week or treating the pain.

I have been having daily migraines for 5 years in November. There are times when I lose hope -- I'm lucky to have my husband and family. Focus on the positive, try (I'm sure it's hard) to feel grateful for those 2 days. Savor them and enjoy yourself along with getting work done.

I've tried many preventative medications, with hardly any results. I have found two meds that help, although a little. For me, it's been Tegretol and Baclofen (so far). But there are SO MANY preventative medications to try. I believe that stat from Teri's book is that 95% of ppl. will find a preventative (or group of preventatives) that will work. Please don't lose hope - the only way you will get anywhere is to keep pushing on. Take care and enjoy this site. There's lots to learn here, along with the great people.

Emily

Thanks very much, Dragondrool and SassyLime9. My specialist appointment is this Wednesday, so fingers crossed!

Done deal! Firmly crossed for you!

quote:

Originally posted by Jena_NYC:
Thanks very much, Dragondrool and SassyLime9. My specialist appointment is this Wednesday, so fingers crossed!

Hi Jena!

Don't think I've seen your post anywhere else and I just wanted to check in and see how you were doing.

Hoping things are a little less hopeless - we're here for you!!

Cyn

Hi Jena....

Welcome to our forum family!!!

How did your appt go? Or is it this Thursday coming up? We've all got our fingers crossed for you!

I've heard REALLY good things about the NYC headache center! I'm actually off to Jefferson myself (my insurance doesn't cover docs in NYC)

I just want to throw in my 2 cents on "But my neuro yesterday seemed to suggest the specialist wouldn't be able to help me any more than he is" He is full of it. Sorry. I've seen 3 different neurologists. And a neurologist is NOT a headache specialist (hence the reason I'm about to take a 3 hour train ride to Philly). Even if the new specialist doesn't work out, it doesn't mean there isn't someone out there who can help you.

As for not letting your migraine diary be a career, well, I'm not sold on that. I find having a really thorough migraine diary has helped me identiry patterns and triggers, and to track my progress on preventives. I think a migraine diary is a very important tool. I actually also keep a daily health journal of what I eat and how I feel each day. Again, helps me keep track of things.

I really hope you are able to find some relief. Please let us know how you are doing!

Kelly