need some advice- feel like I am losing hope and i need help

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need some advice- feel like I am losing hope and i need help

Post  sailingmuffin on Mon Feb 22, 2010 3:38 pm

Hi All,

I had an appoitment with my neurologist today. It went well for the most part. The only bad thing came when I asked him about getting a second opinion about treating the pain. I tried to explain the situation. He listened, but pretty much said there were only a few pain doctors in town and he didn't know of anyone else- so I just feel stuck.

I am in constant pain and right now I feel like no one is taking me seriously. What am I supposed to do? Am I supposed to live in this much pain? Is this it? Is this is as good as it is going to get? If it it, how do I accept it an live with it? I am 29. I have fought this for so long and I don't know how much more I can fight it. I know I need help, but I am having a really hard rime getting help and I don't know what to do anymore. All I know is that I am curled up in a ball in pain right now and I need some help. I feel like if I could get the pain under control, I migrht be ok. but i am just terrified right now. Please, if anyone has any advice, please post or pm me.

Pain fre days,
sailingm
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Re: need some advice- feel like I am losing hope and i need help

Post  AuntieBubbs on Mon Feb 22, 2010 3:48 pm

I'm sorry you didn't get the help you were looking for. I know you had more hope for this dr. appt.

What about a second opinion dr. in another town? Is that an option? You may have to go farther, but if you are willing and able, perhaps this is something for you to do? I would not ask your 1st dr. for a recommendation though, because I think he should've suggested that to begin with, not said that basically, you don't have very many/any options. There should always be options, and you should always be able to get another opinion.
I don't know if you're near a larger town with more physician options, but I hope you have the choice to drive fairly nearby to get another dr.'s opinion. IMO, anywhere within 2 hours is, if not reasonable, at least doable with adequate planning. Maybe someone could drive you or go with you?

I hope it works out!
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Re: need some advice- feel like I am losing hope and i need help

Post  LG on Mon Feb 22, 2010 5:05 pm

SM,

I am going to send you a PM, please keep your eyes peeled.


LG
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constant pain

Post  Hal on Mon Feb 22, 2010 8:32 pm

SM,

I am 62 and have delt with horrible migraines all of my life. Just two years ago I started on a year long 24/7 migraine. I was getting nauseous, my head would feel as if it were going to explode, it felt as if someone was beating on the back of my head with a baseball bat. I slept alot. I stayed in the dark bedroom alot. I hated it. Finally one of the drugs that I had taken, but that didn't work, started to work. I had been on all of them without relief and started over. The one that finally worked was Amitriptalyne. You might give it a try if you haven't used it or if it didn't work in the past.

I think for alot of us migraines will be with us for most of our lives. As you posted yesterday, are you feeling better today?

Hal
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Re: need some advice- feel like I am losing hope and i need help

Post  30yrsofheadache on Tue Feb 23, 2010 4:42 am

Hi, Sailing M,
You are a remarkably strong lady! I wish I lived nearby so I could help you by bringing meals or giving rides, etc. For now, it will just be support. Do you need a referral to see a specialist? I have an open access, meaning I can see anyone on the insurance companies list, no referral needed.

Maybe you could decide how far you are willing to travel and then make a list of all the pain management Dr.s that accept your insurance. Also, you could post here about where you are willing to go and see if anyone has a suggestion. If I were in your shoes, I would try Dr. Robbins or the Dr. that Teri works with (cant remember the name-migraine day). Are you still fainting every day? You are in my thoughts and prayers.
Hugs,
Cindy
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Re: need some advice- feel like I am losing hope and i need help

Post  sailingmuffin on Tue Feb 23, 2010 9:41 am

Hi All,

Thanks so much for all the words of support. I don't know what I would do without y'all.

I have decided that I am going to see about pain managers in another city- probably one affiliated with the University Medical Center where I have been treated in the past. My neurologist was there before moved to another city. I am going to do some research and see who would be willing to treat headache pain. The only other choice would be to see a pain dr in a town about 30 miles away, but I need to find out more about him as well. So at least there are some possibilities.

Right now, I am fainting a lot and the pain is nearly unbearable. I have a call in to my neurologist to see about getting an IV of Depakan at the IV center. I hope this can be done sometime this week. I really do not want to go to the ER, but I am close to needing to go. I really hate being in this position. I haven't been able to stand today without falling down. I hope to hear back from the dr soon.

Pain free days,
sailingm
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Re: need some advice- feel like I am losing hope and i need help

Post  Paradox on Tue Feb 23, 2010 10:10 am

I'm so sorry, Sailing.

I can't imagine having to deal with fainting on top of the chronic pain. I wish I could help you.

Hoping you have good luck in your quest for a new pain management program.

Sending you hugs, Charlotte
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Re: need some advice- feel like I am losing hope and i need help

Post  HeelerLady on Tue Feb 23, 2010 10:44 am

So sorry you are feeling awful. I hope you are able to get some relief soon.

My headache specialist is lumped in with the pain clinic here and is a neurologist. I do hope that with going to a University affiliated medical center you are able to get some relief.

Hope you feel some better today.
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Re: need some advice- feel like I am losing hope and i need help

Post  sailingmuffin on Tue Feb 23, 2010 9:31 pm

Hi All,

I am scheduled for an IV of Depakan on Friday. I just have to hang in there until then- which is easier said than done- as the pain is nearly unbearable. However, I am just going to hang in there until Friday.

I have fainted approximately 20 times today. I am not sure what has caused the increase in fainting, but I think that pain plays some role in the fainting spells. Any thoughts on this?

I appreciate all of your advice and I am definitely going to find a new pain doctor.

Pain free days,
sailingm
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Vagal Tone

Post  Guest on Wed Feb 24, 2010 10:44 am

Sailing,

Have your docs checked your vagal tone as a reason for syncope? I think this is the real driver, and we know it's not a cardiac issue why you're fainting.

I think your central nervous system (duh, sorry this is obvious for both of us) is out of whack. I'm wondering if an extremely (3 tesla) detailied MRI of your entire spine and neck would be helpful, along with EMG and specific review of vagal tone.

Is your nerve stimulator still in place?

Feel free to email me.

-mgb

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Re: need some advice- feel like I am losing hope and i need help

Post  theresae on Wed Feb 24, 2010 10:53 am

so sorry to hear you are not getting the relief and help you need, hang in there, try to stay strong, sorry can think of anything else to say that could help, but i am thinking of you, and sending you positive thoughts

theresa x
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