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-   -   Still not coping. Can't stop the bad thoughts (https://www.neurotalk.org/peripheral-neuropathy/220585-coping-cant-stop-bad.html)

canagirl 05-23-2015 12:28 AM

I appreciate the concern. I am in therapy, it does nothing to help. My brain won't concentrate on anything other than the twutching, constant vibrations and pain. I don't think that will change unless all this stuff goes away...

Littlepaw 05-23-2015 09:35 AM

Thanks for letting us know you are okay. I remember how difficult it was to concentrate when my symptoms were really bad. I hope that the gabapentin gives you some relief as you get on a higher dose of it. Keep in mind it can cause depression in some individuals. If your depression worsens please let your doctor know right away. Does your therapist know you feel you aren't getting anywhere? It may be time to try a different modality in there if therapy isn't helping. It may also be time to add an antidepressant so that the therapy CAN work.

Suicidal feelings, even of a passive nature with no plan, should always be taken seriously. If you don't have a safety plan with someone, a promise that you would reach out before acting on any thoughts, please make one. You are valuable and have a purpose in this world. We all want to see you stay in it.

Sending Love, Littlepaw :grouphug:

Jomar 05-23-2015 10:33 AM

Are you on any antidepressant or anxiety medication?
Sometimes those will help the pain med to work better.

If you are crying a lot , you are losing fluids and that can make things worse also, replace those fluids as it helps the body so much overall.

canagirl 05-23-2015 01:19 PM

I'm only on a lose of nortriptiline in the way of antidepressants but I'm weaning off. I'm afraid of anxiety and depressions meds because of the involuntary movement side effects. I don't want my twitchig and jerking to get worse Or turn Into something like tardive dyskinesia. I feel I am much more suseptible to those side effects than the average person due to what's already happening. I already have a really hard time staying still ( I think as a result of the domperidone). I move constantly without even knowing it. I'm always moving my legs, feet etc. I was not like this before. I know this because my husband is a leg mover and for 10 years it has bugged me so much that he can't sit still.

Littlepaw 05-23-2015 01:42 PM

Your best resource for looking into meds for depression would be a psychiatrist. When people have a garden variety short term depression their GP can be okay for this. However, when there are complex medical issues and potential side effects to consider it is best to see the specialists. A good, experienced psychiatrist will have dealt with movement disorders and anti-depressants before. People with Parkinson's and other issues that are co-commitant with their depression can end up with tardive dyskinesia from certain drugs though it is thankfully rare. Meds used for anxiety may actually help calm the nerves to a degree and help your sleep without contributing to twitching. The low dose of nortriptyline used for nerve pain is not enough to touch mood and as you said you are titrating down. Going ahead with a psych appointment would give you a safety net and established relationship if you do need to add something in for mood.

sending hugs, :hug:

Aussie99 05-24-2015 12:20 AM

Quote:

Originally Posted by canagirl (Post 1143669)
I can't cope. I'm so weak. All I do is cry. I can't find any peace or rest because to stop moving means excruciating pain. The nortriptiline isn't working ( maybe a bit but nowhere near enough). I feel like I must have compressed nerves all over so I try stretches and massaging a bit but then I burn like crazy for days. I feel like I have to try and uncompress these nerves ( I have to do something that to try and heal) but it just causes pain later. Gabapentin is low dose right now. Just on it for a day so far. Dr lowered starting dose to 100:100:100 for 4 days then 100:100:300 for four days then up by 100 every few days after that. Told to stop nortriptiline because of my blurry vision ( which I had before the med but it's WAY worse now). Start weaning tonight. Just keep thinking I can't live much longer. Family days that's selfish of me to say and think. But I think everyone will be better off without me. I am traumatizing my son with all the crying. He doesn't get the attention and love he deserves because I am so sad and in so much pain. He would be so much better with another mom. Everybody could go back to living normal lives after they grieve for me. I know u guys understand and wouldn't say that I am selfish. I think my family is selfish for trying to make me stay here and endure this excruciating existence.

Canagirl!!! No!!! Don't think that way. Your thoughts create your reality. 11 years ago I was struck with terrible all over PN I too was in agony/misery. It abated after 3 years and I started to live normally again. I would have never believed anyone if they would have told me I was going to start travelling around the world and get married and start a business. I have done all of this with PN. The same PN that I thought would have certainly disabled me or killed me. I know you cannot see through the dark clouds now, but being on these boards for the last 11 years I have observed even some of the most treacherous cases of PN abate & improve. Many many people have eventually recovered enough to start leading a normal life. I too twitched and vibrated for almost 3 years straight. Then one day it went away!! Please don't give up. PN is not like other illnesses it can take a few years to get better. Your son and husband love you and need you and your son will only ever have 1 mother.:hug:

jenng 05-24-2015 01:40 AM

Canagirl
 
I've been where you are. I understand not wanting to take meds, but if you are contemplating suicide, you will need more help than willpower. I took Zoloft and Clonazepam for about 4 yrs until I figured out how to adapt to all the changes. I'm pretty sure they saved my life. I knew that benzodiazepines were addictive, but my anxiety was at a dangerous level. I wasn't sleeping or eating. I get the idea this is you right now. Counseling is very helpful with the right person. I suggest someone who deals with chronic disease and anxiety. Counselors are like antidepressants-you may need to try more than one.

Everyone is different in how they respond to antidepressants. Nortriptyline is an old tricyclic antidepressant, & those do have more side effects. They are commonly used with gabapentin to treat nerve pain. I actually take Amitriptyline & gabapentin now. I still get twitches and jerks, but I have gotten used to them. They don't terrify me like they used to. It's hard to imagine now, but your body does have the ability to adapt over time. What you need is time for your mind and emotions to settle.

I agree with everyone, don't wait to seek help.

kiwi33 05-24-2015 06:03 AM

Quote:

Originally Posted by Littlepaw (Post 1143997)
Your best resource for looking into meds for depression would be a psychiatrist. When people have a garden variety short term depression their GP can be okay for this. However, when there are complex medical issues and potential side effects to consider it is best to see the specialists.

Canagirl, I agree with what Littlepaw wrote 100%.

A psychiatrist, not a GP, should have the specialist knowledge to match the "right" med to the "right" person.

With care and concern.

SoftTalker 05-24-2015 12:12 PM

Canagirl

Hope you are coming back here periodically to view the support you have received here. :hug:

Hang in there and hold on , Dear Canagirl!

I too, have had the thoughts you are having.

Although fairly new to PN, I am certainly not new to severe pain and other extremely uncomfortable and frightening and seemingly unbearable health symptoms/problems.

All I can tell you is that I "Held On" - and that is what I will tell you.

"Hang In and Hold On, Canagirl !!!!"

And

Perhaps you can try to find some distractions to take your mind off your body. Difficult, I know. For me, music is cathartic......

Also

Don't leave before the MIRACLE HAPPENS!

Hugs and good thoughts going your way.

:grouphug:

canagirl 05-25-2015 12:03 AM

Quote:

Originally Posted by Aussie99 (Post 1144077)
Canagirl!!! No!!! Don't think that way. Your thoughts create your reality. 11 years ago I was struck with terrible all over PN I too was in agony/misery. It abated after 3 years and I started to live normally again. I would have never believed anyone if they would have told me I was going to start travelling around the world and get married and start a business. I have done all of this with PN. The same PN that I thought would have certainly disabled me or killed me. I know you cannot see through the dark clouds now, but being on these boards for the last 11 years I have observed even some of the most treacherous cases of PN abate & improve. Many many people have eventually recovered enough to start leading a normal life. I too twitched and vibrated for almost 3 years straight. Then one day it went away!! Please don't give up. PN is not like other illnesses it can take a few years to get better. Your son and husband love you and need you and your son will only ever have 1 mother.:hug:

This is very encouraging! I didn't think anybody would improve after 3 years. Please can u tell me more about ur symptoms?


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