Completely lost..new meds aren't working and new neuro isn't listening

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Completely lost..new meds aren't working and new neuro isn't listening

Post  Greeneyes on Tue Oct 19, 2010 12:36 am

I'm crying as I type this the new meds aren't working and the new neurologist isn't listening at all. The medicine they gave me to sleep in making me a zombie..sleep all night..ten minutes awake then I need to go to bed again..literally, can't keep my eyes open..told the neuro this and his respone keep taking the sleep medication..plus, I have a rash on my chest from one of the new meds.

For the pain I'm supposed to take up to 3 pills a day with one dilaudid if the migraine is severe..I'm still in pain..what's wrong with me?

He's having me take 2 of the Effexor now.

Stll taking the zofran for nausea/vomiting..

What do I do..do I go back to my PCP and ask to be admitted like she said I should have been before? I honestly don't know what to do I'm in so much pain I feel like I just want to die and that's not like je at all.

Any advice please...my husband has a difficult time talking about how much they affect my life..I need him to stick up for me.

He doesn't know if he wants to be with a sick person anymore..I'm so stressed and sad.

Thank you for listening.

Love and best to my angels on earth..I couldn't do this without you I love you all. God bless you and love,
greeneyes
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Re: Completely lost..new meds aren't working and new neuro isn't listening

Post  GonzoHUNTER on Tue Oct 19, 2010 1:21 am

Keep your head up...I'm in a similar boat. You will get better. Remember the drs work for you

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Re: Completely lost..new meds aren't working and new neuro isn't listening

Post  annabella on Tue Oct 19, 2010 1:45 am

I am sorry to hear you are in such a dark place at the moment and it does not help that your loved ones are not being supportive. Do you have a good friend who could act as your health advocate? I work closely with the health system here in Australia and for very ill people who are not able to cope for themselves, whether for the short or long term, they have what is called a health advocate.

It is usually a trusted person who can speak on the ill persons behalf to health professionals. They have no legal rights but are able to get through to their doctors and other health workers to explain your situation in a calm and confident manner. They are regarded very highly and are a valuable asset when dealing with others, even family members who may be at their wits end with the person who is ill.

Even if you can call a help line for some advice or just to have listening ear and a kind word would be helpful by the sound of it.
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Post  lentils on Tue Oct 19, 2010 2:15 am

I guess if I were you I would be ask to be admitted. A change in environment and being around (hopefully) caring people might help. I hope this cycle breaks soon. Try not to worry about husband right now, you have enough to deal with. Hugs and prayers.

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Re: Completely lost..new meds aren't working and new neuro isn't listening

Post  30yrsofheadache on Tue Oct 19, 2010 5:19 am

Wendy, I dont have much advice to offer. I feel your pain, though. My husband went through a period of several years being completly non-supportive and critical of my multiple illnesses. I found some comfort and good advice on a website Cheryl recommended. It is called Simlpe Truths.

If you sign up they will send you inspirational messages that are truly wonderful. The one that helped me most is called 100/0 principle. There is a short video that describes the principle. It doesnt seem like it would help, but it did help our relationship a lot. It is about taking responsibility for the happiness in a relationship (the 100) and expecting nothing(the 0).

I am not explaining it well, bad M today. How much Dilaudid are you taking? I had to take 8 mg. the other night and it barely touched it. Last night I took my last dose of Demoral instead and slept all night. I am going to go back to Demoral as my rescue med, Dilaudid just doesnt cut it for me. I hope something works for you soon.
Hugs,
Cindy
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Re: Completely lost..new meds aren't working and new neuro isn't listening

Post  pen on Tue Oct 19, 2010 5:53 am

Wendy, I feel so for you. In England, if my experience is typical. No one really cares and there are advocates, or anything like.
I am alone in this, and I feel it every day. My husband and kids are supportive, but they dont know any more than I do,
It is so bad that we are left to deal with this in this way.
Okay so the drs dont know what to do, but the could show a bit more empathy.

I hope you get some relief.

Pen

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Re: Completely lost..new meds aren't working and new neuro isn't listening

Post  Anna's Mom on Tue Oct 19, 2010 6:41 am

My thoughts, dear Wendy...one Dilaudid a day isn't much for the hours of severe pain you experience. Haven't you been in constant pain for years?

Since you haven't made much progress with PCP's and neuros treating you, a pain clinic is a reasonable option. I know Mianna has mentioned it to you, and she has knowledge of your HMO.

I suppose getting to the pain clinic is hard when you don't drive, and you maybe don't want to burden your hubby with taking you That is understandable. So perhaps you can reach out to find a solution for that. Where I live, help can be found through "Human Services" in my county.

For example--a phone call can be made to Human Services saying I need this type of help. I need a volunteer driver to take me to a medical appointment in this town twice per month (or something on that order). They have ideas and people to contact to get the help needed.

Or you could call local churches, The Salvation Army, or The United Way help line to ask for help in finding a volunteer driver to take you to medical appointments.

You need long term help and very experienced doctors who treat severe intractable pain to find the right combo of meds to make this pain tolerable for you. It isn't a quick fix. I think a pain clinic within your HMO is a good next step for long term help.

This is the best advice I can think of right now. My heart goes out to you!

Cheryl

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Re: Completely lost..new meds aren't working and new neuro isn't listening

Post  sailingmuffin on Tue Oct 19, 2010 10:27 am

Hi Wendy,

It sounds like you are in a really rough place right now.

I would call your PCP and ask to be admitted. It is pretty clear that things are not being controlled at home. In your case, I would also think about finding a pain doctor as it appears that your pain is completely out of control.

The other option would be a pain clinic. But I really think you need some outside or hospital help right now.

Hope things improve.

Pain free days,
sailingm
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