Migraine

lets see if i can try and type this post while im crying.
i feel like i've tried everything to treat my migraines. but they are at their all time worst right now. i see a migraine specialist dr. wilson but i can only get appointment in 4 or 6 month increments. so she'll perscripe something, one month later it doesn't work then i have to wait 5 more months to try smething new. i called every neuro on my insurance list to find a new dr. and none of them specialise in migrines.
ive tried avoiding my triggers, biofeedback, nerve blocks, preventatives, triptans aren't working etc.
right now im just so hopeless b/c i have a 15month old and i can't even take care of him most days. he goes to my in laws.
right now im going on a day 3 migraine and im just at my wits ends.
please, could really use some support or suggestions.
thanks
jj

Awwww JJ,

I am so sorry you are going through this This disease stinks and having a 15 month old is hard enough, but to have a doctor you can't rely on. It is so hard when you are in such pain. And three days is a long time to have a migraine. Are you sure you don't need to go to the ER yet?

Is there anyway you can call the office and get a quicker appt.? It doesn't sound like it. If not, some of us have gone outside of our insurance network to get help. Have you seen the link to the Migraine specialist on the board. I don't know if this is an option for you, but it might be something to think about. I did this and found a wonderful Migraine specialist.

For now, is there something in your toolbox that might help, like an icepack, lavendar, nice bath?

We are here for you. Here's some more hugs to keep you going Hang in there. Let us know how you are doing, k

Dar

Hi JJ

Any Migraine pain lasting longer than 72 hours without a four-hour pain-free break while awake could be Status Migrainous and needs immedicate medical attention. Either at the ER or Urgent Care Center. You can read about Status Migrainous HERE.

Please let us know that you have taken care of this, ok?

JJ - Sorry to hear things are so hard! i agree with Nancy and Dar - get rid of this migraine first! Then, if this dr. isn't working for you I agree with the others that you should find another. But have you checked if Dr. Wilson will respond to calls in between - or if she has a nurse or nurse practitioner who will take your calls? Sometimes drs make you wait for an actual appointment but will make adjustments in between. Or if nothing is working will see you sooner.

Thank goodness your inlaws can give you a break - I know you want to be with your son but I'm sure he appreciates all the time he has with you and you need to take care of you.

Sending you . I hope things look better soon!

- megs

I know it must feel so frustrating to try 1 preventive after another and nothing works- but there are so many out there that could work for you, don't give up hope! This disease can be really depressing when faced with day after day of pain, plus having to take care of a toddler on top of that. Once you break this migraine, I hope you can get on a better schedule with your doctor. Please let us know, we're here to listen.

Valerie

JJ,

My heart goes out to you!

I remember the days of taking care of two little boys while having a migraine. Thank goodness you have such a wonderful, supportive family!

Please get this migraine aborted immediately! Like Nancy said, 72 hours without a four hour pain free break while your awake means it's time to seek medical attention.

Dar brought up a great point. Using items from your toolbox is a great way to cope when our medications fail us.

If I were you, once this migraine is broken, I would call my specialist and try to get in earlier or arrange for a phone appointment at the very least. Does your doctor have an NP that you can talk to for some advice?

HERE is the list of migraine specialists in case you need it once your migraine is broken.

I'm sending loads of pain free vibes your way along with lots of

Please take care of yourself and keep us posted, k?

JJ,
I am so sorry you are going through this on top of having a little one. What should be a time of joy with your baby is being clouded in dealing with migraine disease.

Using the items in the toolbox the others have suggested, making sure you are not in status and don't need to go to the ER is essential.

A couple of thoughts about dealing with your doctor if you in fact want to continue with her. The only time my neurlogist makes appointments for more than 3 months out is when things are under control. So will they let you know may a series of appointments for every 3 months. Appointments can always be cancelled. Also there must be a process when a patient is having an urgent or emergent problem. If not than there is a problem.

My neurlogist is not a migraine specialist. I have been extremely happy with my care. I have had 2 episodes when I've needed to be seen urgently and have gotten in very quickly. Phone calls have been returned by either the neurlogist or the nurse practioner. While I believe that a migraine specialist is our first and best choice, I also feel that sometimes that is not possible and there are neurlogist that can also be good. My doctor's primary focus is seizure and MS patients. She clearly sees many migraine patient's also.

Your other option would be to get into to see your primary care doctor. He/she might be able to help you through this acute episode also. He/she might be willing to contact the neurlogist and get orders for something to break the cycle of this migraine.

JJ, keep us posted as to what is going on. I know how difficult this must be for you. I know the longer an episode like this goes on the more tense I get and that just seems to make it worse.

Take care.

Cindy

JJ,

I have two little boys at home, so I can certainly relate to your situation! (Mine are 5 and 7, though, and need less help than your little one!)

First, you MUST remember that you will only be a good mom if you take good care of yourself and work hard to get well! I know you want to be there for your son, but you've really got to put your energy into getting well right now!

Have you asked your doctor very directly to give you more frequent appointments? Remember, some new preventive meds may take up to 3 months to work, so don't be too quick to dismiss a med! But it certainly isn't unreasonable to want to see your doctor every 2-3 months! If your doc can't accomodate visits that often, then maybe this doc isn't the "right" one for you!

Don't give up!!! We're here for you!!
jenny

Jennifer,

As a mom of four (2, 4, 6 & 8) I understand your challenge of being a mom and dealing with migraines. During my worst times my youngest was just a baby. I'm glad that you have family support.

I'm in agreement with all the advice that you've been given so far. If your doctor simply won't schedule an earlier appointment, in the meantime work with your PCP. Also, keep Nancy's information in mind.

Even when you feel like you've tried everything, there is always something else. I know it's hard to remember this through the toughest hours.

Let us know how you are doing.
Liz

I can't offer you much in the way of advice, but I at least want to send some virtual hugs your way....

quote:

Originally posted by Cindy:A couple of thoughts about dealing with your doctor if you in fact want to continue with her. The only time my neurlogist makes appointments for more than 3 months out is when things are under control. So will they let you know may a series of appointments for every 3 months. Appointments can always be cancelled. Also there must be a process when a patient is having an urgent or emergent problem. If not than there is a problem.

I agree with Cindy. If there is nothing for you to do but be in pain for 6 months, there is an issue there.

I also see a neuro who is not a migraine specialist and am very happy with my doctor. On a new med, my follow up is 6 weeks. Even if it appears to be working, my next appt is only 2 months later. But I am relatively new to the diagnosis, and I'm only on preventive number two. My opionin on neuro vs. migraine specialist may change on preventive number ten.

I have to agree with the others, if you haven't had at least a 4 hour break, please go to the ER.


Please remember we are all here for you! Keep us posted!

thank you everybody. thanks for the hugs and support. i love the support i get on this board, it means the world to me.

today i was supposed to have another nerve block done and the dr. just cancelled on me! errr! not sure why yet, she is going to call back to reschedule.

since my son was born my migraines have kinda changed. i get them in the middle of the night. never in the day time. ill take imitrex shots and they go away for a few hours, then come back. so i do get a "little" break but they always come back. but after three days of on/off it really starts to take a toll on me. ya know? i did try a nice shower, deep breathing, ice packs but nothing totolly worked.

i have the best most supportive husband but my migraines start to take him away from work to help me or the baby. and i hate that! and my son is just so darn cute at this age, he is happy all the time and makes me smile constantly. not being with him breaks my heart.

i am going to take your advice (pp) about finding a neuro who maybe isn't a spcialist but does have more accesable appointments. or someone out of network. the staff at my neuro right now stink. they take forever to call back IF they call back. i have a neuro that i see inbetween visit but he is very oldschool. "well if topomax doesn't work then we have run out of options" i know this isn't true. i posted before about his comment on Namanda.

its new day, im feeling a little better. off i go to find a new doctor.
thanks everyone for answering my post, im so glad to have friends her i can lean on.

ps my neuro is listed as one of our doctors for this website! ha!

Jennifer,

Are you seeing Dr. Wilson? I've heard wonderful things about her! One of my cousins that live in Florida see her and says she is great!

Remember, you have to have a good relationship with your doctor, especially with migraines, I feel.

Not every doctor we see is going to be the right doctor for us. That doesn't make them a bad doctor per se, just maybe not the right one to help us.

If you are not seeing Dr. Wilson - check her out - I hear she is quite amazing. I'm obviously going by hear say since I've not seen her myself.

Let us know how you make out!

Hi JJ

I'm glad to hear you're feeling better.

JJ,

Do you sleep well?

To quote Teri from an earlier related post, "How's your sleep? For lots of Migraineurs who wake up with Migraines, there's a sleep issue that's triggering them. Too much, too little, disrupted, or poor quality sleep can be a big problem."

It's good to hear the day improved some. Enjoy your little one!

Liz