Coping With Frustration

Written by

Tue, November 18, 2008

I got a phone call back around 4pm this afternoon, telling me that "I would just have to bear with it" to ride it out, and if needed to contact them again later on my condition. After all, she said "there is no miracle pill" - and I said I know that, but I'm trying to get to the point where I am somewhat functional in life.

Here I am, about 830pm - EST - and my head is throbbing, but my FRUSTRATION level is so elevated right now. I am at a loss for words - when I've conveyed my pain - and feel I've been dismissed.

I don't expect complete and sudden relief from this chronic issue with migraines, but know it will take time and experimentation to get the right combination to minimize the impact upon my quality of life.

I just need a sanity check - am I over reacting to think about going to a new neurologist - or should I just subscribe to this level of care?

Thanks to anyone who has read this and listened to me "vent".

< Previous 1 | Page 2 >

Comments (10) | Add comment

Notify me when there are new comments

kim connelly

11/18/08 9:59pm

Hi there.....I am a frequent miagraine sufferer as well as a critical care nurse. I work very closely with several neurologists who treat miagraine suffers. I get to see the ins and outs of sufferers almost every day. I must say it is very easy to become frustrated with the medical team.....however, don't get too worked up due to your pain. The pain can cause you to lose that sense of right and wrong. I unfortunately understand both sides of the fence. I know for me suffering from my miagraines renders me unhuman....in every aspect of my life. I cannot eat, drink, think, sleep, or talk. My mind is a temporary cloud of insanity. Expecting ANY human who does not experience YOUR type of headaches (this includes fellow miagraine ssufferers, too) will only add to your cloud of insanity. I find for myself to ONLY talk to my doctor when I am lucid and free from a miagraine. This will portray of picture of being "All wrapped up, and fine looking." In other words, "she seems OK, not a nut job at all!" Please have your signs ans symptoms on a piece of paper, highlighting the most serious ones. Also have an excuse on how this effects you from living your life. I find the more info I give the doc on paper the more time I get to discuss what I need in terms of meds. I know this is a terrible system to have to have shortcuts to get what you need. I am terribly sorry that you did not get the response you needed from the docs office. Don't give up.....see if there is some type of EMERGENCY plan you can devise with him. You will only use this plan in dire straits. This may seem fruitless to you, but you may be surprised the way you are received it in. You may find him receptive to this and a emergency plan my ease your miagraine pain at the most severe times. Having a plan alleviates the "I am in so much pain,,,,I NEED HELP NOW mindset." Good luck! I hope some of my methods will help!

11/18/08 10:47pm

Kim,

Thanks so much for sharing your words of wisdom and advice. It definitely put things into a perspective for me, and provided areas where I can improve on my relationship with the neurologist. Your tip on how it impacts my life - is something I completely missed today - I could have articulated it much better than I did.

I am organized and have things written down to discuss during my normal scheduled appointment. However, today - I was not the same lucid person on the end of the phone, who sat in the office.

Again, thanks for your comments.

Carol

Tracy Mulroy

11/19/08 12:56pm

Carol,

I too am a migraine sufferer - have been for about 20 years. I went through a period about ten years ago when I literally had a migraine for about 18 months straight. I was an attorney and had to leave my job. Anyway, when i was at my wit's end - in pain and not getting help from the medical professionals- I went to the Diamond Headache Clinic in Chicago. It saved me. They check you in-patient and really understand migraines. My headaches are a little more manageable now and I got sick of having to go to Chicago for medical care so now I see Stuart Stark at the Neurology & Headache Treatment Center who I love. He's in Alexandria and I highly recommend him. Anyway, just thought I would throw out those ideas. Know you are not alone and I hope feel better!

Tracy Mulroy

Denise

11/21/08 3:26pm

You said that your good Doc is in Alexandra. Is that in Minnesota? Sorry if i mis spell, head pain makes it hard to think. Thank you,

Denise

P.S. What does the good Doc do for you. I take percocet and my Doc wants me off and I can understand that because it causes rebound headaches. But it gives me a day. My primary care wants me to find a migraine clinic to go to. I think he is getting sick of me.

Tracy Mulroy

11/21/08 4:57pm

Denise,

Sorry - I should have said Alexandria, Virginia. He and the Diamond Headache Clinic both put me on preventative drugs - Topomax, an unusual antidepressant (Vivactil), 2 blood pressure meds. They also use DHE when I have a severe headache -it is nasty stuff - but it works every time. Also, imitrex and that whole class of drugs. They also have me on over-the-counter Magnesium. I can no longer take DHE or imitrex because I had a heart attack. So now I take Fiorinal with Codeine and Zofran when I get a migraine. I also get trigger point injections in my neck. They also sometimes give valium or some muscle relaxer.

I learned the hard way that the best way to manage migraines is with a migraine specialist - someone who really gets it. I don't think a GP should be managing migraines in a case as severe as yours - I know it didn't work for me. I really hope you feel better and get some relief soon!

Best,

Tracy

Nancy Harris Bonk

11/19/08 5:12pm

Hello, and welcome to MyMigraineConnection.com!

You are absolutely not insane and you definately do not have to tolerate this poor level of care. As we like to say around here, "If your doctor's not listening, FIRE HIS SORRY BUTT!" Truly, it is time for a new doctor, maybe a Migraine specialist, but we'll get to that in a minute.

I'm a bit concerned about your Migraine pain. You've had this same Migraine since November 12? That is way too long. You see, there is a condition called Status Migrainous, if Migraine pain lasts longer than 72 hours without a four-hour, pain-free break while awake. If this is the case, one needs to seek medical attention right away because it increases our risk of stroke. Please read this article: Status Migrainous - The Basics. There are IV infusion treatments some neurologists can do in there offices. That information can be found in these articles: IV Treatment of Refractory Migraines and IV Lidocaine - Effective Treatment for Refractory Migraines in the Clinic.

Migraine specialists are experts treating people with Migraine disease and headache disorders. When your car breaks, you take it to a mechanic, the expert to fix it right? So think of it this way, our heads need some help, why not take it to the expert - a Migraine specialist? We have a list of patient recommended specialists you can see by clicking HERE.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

califmom

11/19/08 7:00pm

I am sorry for your situation. Keep trying to find a doc with staff who will help, who understand when you're in pain.

One of the issues I deal with, that I think I saw in your post, was the anxiety, fear and frustration that comes with getting a mig. I have found that if I take 1/2 a Xanax when I am taking my initial Excedrin or Relpax (depending on when I catch the aura or the throbbing), I am much more likely to stop the mig in its tracks. The fear of the pain, the anxiety it causes, can ratchet up the pain level quickly. BTW, I am such a "lightweight" when it comes to drugs, I usually take 1/2 a dose of whatever. If I don't, I'm zonked out.

My neuro agreed with my little drug combo and said he thought it was a good idea, because he believes that the fear of pain is a stackable trigger.

I wish you better days, my friend, and no more migraines!

Kristen

11/20/08 2:06pm

i can completely relate to you!

i am 23 and have chronic migraines...for years i have been going to a general physician...i have been through all of the migraine meds with no luck...Had an MRI and CT scan with negative results... it came down to pain pills and demorall shots at the ER... or just cope-ing with it. They eventually tried Topamax. The small doses would work for a short period of time and stop working.. Now i am on 200mg a day. I was referred to a neourologist due to the high doseage. Being Topamax is more of an epilepsy medication than a migraine medication.

The neurologist has me on elavil, magnesium oxide, & stadol spray. For my migraines...He has done an EEG...and an EMG... I wont know the results on those for another week, though... but he has me on gabapenton.

like i said...i feel your pain!

I hope you find the help you need....

Karen L

12/ 7/08 7:53am

I apologize for not writing sooner, but you're dead on right. As much as I hate to say this, definitely find a new doctor. I've been on this rollercoaster for 30 years and NO ONE, let alone a neurologist or staff membrt, should treat you this way - especially if they truly understand migraine. I've had to doctor hop. I'm fortunate to have found a good one now. She also has migraines (although not like mine) but I think she understands the pain and the emotions that go with it. The only "bad" part is that she is in Ohio and I'm in Florida but I only have to see her face to face once a year for this relationship. But her own pain is the key, in my opinion. At any time, if I'm in a bad cycle, I can call and talk to her nurse and she'll prescribe a plan and meds for me (with docs approval) all over the phone. I've never been made to feel unjustified or a drug addict when I call there. I think a big key to that is that my doctor is a sufferer. That's what I would try to look for in a neurologist, because I have had other neuros who just got frustrated with me and, basically, tried to ditch me because I wasn't responding to what they were prescribing. The bottom line was that they just didn't know what to do next.

I wish there was a concrete answer for all of us but, you know the deal, there isn't. I have to say I really admire you being able to complete a 23-year military career with this affliction. And I also want to sincerely thank you for your service.

lisaann310

8/ 5/09 8:07pm

you should definitely look for a second opinion from another neurologist and try to see if you can get a primary physician or family doctor to help monitor the sudden attacks to keep from going to the er. I have been dealing with migraines for the past 6 years,but am now dealing with chronic daily migraines. I have found that I have arthritis in the top 3 joints of my neck which could have some tributation to the migraine attacks but dealing with the doctors and trying to get treatments just to live a normal life has been very frustrating. I have been getting RF neurotomy procedures and nerve blocks, they have been more successfull than anything else. Good luck, I have found dealing with migraines the worst thing I have ever had to deal with.

Coping With Frustration

Ask a Question