Doctors are not helping, got to get moving

[MRT09]

Hello,

This question has probably been asked before, but does anyone have any advice on how to keep going when having really bad days or weeks? How to relive pain when on the move?

I have been dealing with severe pain in the back of my head, nausea and dizziness for some weeks now. Some days I am so bad I am throwing up. If I do too much in one day I end up being out for the next two days with even more pain in the back of my head.
Being the holiday season, I have been fortunate to be able to recline with an ice pack to the back of the head and try not to move. Admittedly, that has how I have been spending most of my days/afternoons lately. My pain killers help a little depending on the day but they do not help with the nausea.
With classes starting soon, not being able to afford to  be not working, and my family beginning to think that I am not trying hard enough to get better, I have to find a new solution.

I feel this question sounds naïve  but I really don’t know what do since the doctors are currently not helping and I am still new to Chiari.

I hope everyone had and enjoyable Christmas and New Years.

[shanmomof3]

since you cant get in to see your pcp the only thing otc that i can think of for nausea is Emitrol. And what selma said. I have also found just recently that a sleep mask helps me when the HAs are bad. --Shannon

[selmaS]

When u r having a great deal of pain...all I can suggest is rest...I soak in the tub and listen to relaxing music and keep the lights low.......

I pray u find a way to help eleviate ur pain.....did u see the Health page on Anti inflammatory foods?...better than too many NSAIDS : )

"selma"

[MRT09]

Thanks everyone for your advice! Y' all gave me good things to try.
I have seen a specialist but he told me that I have to speak to my family doctor about the pain and nausea. The family doctor cant see me for awhile, so I was trying to figure what to do.

[shanmomof3]

Unfortunately there is no "fix" for the pain and no cure for chiari. I totally agree with pdxmomof3boys and the tips she have you. As for the nausea the only thing i have found that works for me is the phenagran gel that you rub on your wrists. Also look in the health pages for a list of anti inflammatory foods. The biggest thing is to know your own body and to listen to it! Dont push yourself or you will pay for it later. Also have you seen a specialist yet? I hope this helps and hope your feeling better soon. -- Shannon

[selmaS]

Hi....the best advice I can give is find a true chiari specialist.....see the chiari specialist thread and see which drs r closest to u and research them.

The list is not an endorsement, but a list of drs that members here have gone to and liked. I hope it gives newbies a starting point.

As for how u feel, sounds like u may be in a "flare"...so try to relax and do not do as much as u normally would......otherwise u will pay for several days after.

Ice does not work for me, heat does, so u have do try different things to see what works best for u.

"selma"

[dermarfx]

I feel this question sounds naïve  but I really don’t know what do since the doctors are currently not helping and I am still new to Chiari.

No its not Neive.....its not...

I feel the same, I feel useless to a extent, and am afraid that others think that I am being lazy....
This is mostly in my head, but I feel this way..

I also have only known for a little while,.

About the ice on your neck, I have a headache all of the time...Seems to have been long enough with a headache, that I am not sure I will ever not have this same headache.......

Tell anyone in your family, that this is a serious disabling thin that has affected you.I feel this way, heck sanity is hard to hold onto,,when your hands are trembling from your head hurting so badly that yo clench your jaw, when you walk........sorry to sound rude,but my head hurts this badly.

[pdxmomof3boys]

Are you a teacher or a student? I am a teacher, and I have to say that my pain has been MUCH more manageable because I am at home and able to stop when I need to. My kids don't like it all that much, but I just let them sit on my legs and watch a movie while I use some heat on my neck (I prefer the heat to cold) and close my eyes til the pain goes away. I try sipping tea for the nausea, just because warmth to me is comforting and cammomile or mint teas do help with nausea. Have you tried zofran or any other anti-nausea med by prescription? They help for some.

There is no easy fix to help you keep going. In fact, there is NOTHING I can do to keep going when I feel bad, which is more often now. That is why I have opted to have the decompression surgery now, as opposed to waiting for the end of the school year. I can't push myself. I also have breathing problems and sleep apnea that I attribute to CM that I can't take anymore. I am  hoping that the surgery will help my symptoms.

It is difficult to explain to family and friends what you are feeling. Especially when they see you most of the time as well and then suddenly you are flat on your back and can't function. Most of my family didn't even know I was suffering with anything for MONTHS and feel like this surgery is out of the blue. You just need to stop and rest. Sometimes I just have to sit while I teach, or change my approach or technique to match what I have the energy to do. Pace yourself -- don't do too much in one day. I picked up my son one day and carried him a few feet and suffered for a week after. I don't do that anymore! You just have to know your limits and respect them. Others will figure it out on their own.

I have not taken any pain meds. I really didn't want to rely on them because I can't function while on them -- can't teach, take care of my kids, or anything. Just rest when you can and remember not to overdo. I know it's hard -- I have a hard time limiting myself, too. Just think of what tomorrow will be like if you don't!

Best of luck :)