No replacement


I'm 60. My battery is running out in a few months. I had my first one at 42. My second one 51. I have alot of medical problems that cause extreme pain full body neuropathy plus muscle wasting. It started after taking antibiotics. I have seizure disorder controlled, neurocardiogentic syncope that's what the pacemaker is for. Plus sibo and Neurogenic bowels. My whole body has been effected due to toxicity. I also had a botched floroscopy epidural spinal tap which injured me with 8 bulging discs, tarlov cyst and sacral swelling.  Does anyone think of no replacement who is sick with other diseases or conditions with no cure ? 


No replacement

by Gemita - 2020-05-10 13:06:21

Dear Blondpacer,

Firstly I want you to know that whatever you decide, I will support you one hundred per cent.  Life has to be worth living and we should all expect to have a reasonable quality of life.  Take these away and I would find myself asking the same question.

Maybe I am not the best person to be answering this since I have always believed in life no matter what life threw at me.  I am 71 and have multiple complex health issues too and yes I get very down sometimes when I have the desire to do something but not the strength, but I can always find a glimmer of hope at these difficult times in my family, friends and my love for life which is so precious.  While we have life we have opportunity of changing it for the better, finding cures for our illness, finding ways of coping better.  

I have witnessed members of my family overcoming serious health problems and going on to live a productive, quality of life for several more years.  Indeed my own hubby has survived serious illness and his doctors are amazed at how well he is doing and he was ready to call it a day.  He is now the proud great grand father of Francesca, a beautiful little girl he would never have known if he had decided to give up.  He would frequently question the meaning of life when he felt so ill but I gently reminded him that he would soon be the first great grand father in the family and he just needed to stay well until then.  Now he wants to live for ever.

You are 60 with so much ahead of you.  Keep searching for a better life.  It may still be there for you if only you can find it.  I send you my warmest wishes and hope that you will soon be more comfortable whatever decision you come to.


Thank you

by Blondpacer - 2020-05-10 14:42:27

I have no children. Family is 2 brothers and mom in nursing home suffering. I had a wonderful life well satisfied. Seizures and a pacemaker never bothered me. I exercised everyday never really felt I had a pacemaker until check-ups. The medical community let me down. They gave me meds, did procedures and misdiagnosed which screwed my life. I suffer everyday. I'm not even sure a doctor will approve me. I don't even have a primary because he said we're all gonna die someday to me. He also said I'm too complex of a case "What do you want from me". I have a husband but marriage change after I got ill with autonomic neuropathy and other things. But thank you for your opinion ! Hugs !

what does the pacer do

by Tracey_E - 2020-05-10 16:51:29

If you have it for NCS, you probably don't pace much, just when your heart pauses? You can choose not to replace it, that's up to you, but if I had to take a guess I would say you'd end up more uncomfortable. It's possible your heart would stop and not start up again, but it's more likely without the pacer that it would stop, you'd either feel bad or pass out, then it would keep beating and you'd be left with injuries from passing out.

I'm sorry you don't feel life is worth fighting for. Have you considered discussing it with a professional, possibly looking into anti-depressants? 

Pain relief

by Gemita - 2020-05-10 18:11:15

Dear Blondpacer, 

I expect you have tried everything, but have you seen a pain consultant?  I had a nerve block and was put on Pregabalin (Lyrica) for neuropathic pain with burning.  It was very helpful at a time when nothing was helping. The pain consultant told me that they also use low dose antidepressants which are useful for pain relief too but I have never wanted to take antidepressants, so declined.  

It sounds to me as though you need to find the right doctor who has the expertise to treat you and not to give up on you.  You are obviously a challenge and your primary's comment about we are all going to die some day sounds like a doctor out of his depth.  You deserve better than that and in the right hands you will improve, I feel sure

Thank you

by Blondpacer - 2020-05-11 10:10:16

I appreciate your comments. Unfortunately when I got neuropathy it effected the whole nervous system. Dysautonomia only effected my heart. A dysautonomia condition you must be careful with anti depression meds. I have pain doctor he tries to help but meds I have tried makes me worst. I do go to a pain management meetings once a month. After taking minocyline, avelox and doxycycline my whole body reacted. Unfortunately the FDA gave warnings to the medical community about tendon, joint damage plus neuropathy damage. Since I already had neurocardiogentic syncope it damaged my whole body. I have no fat or muscle in my ribs, chest and upper back. Also botched spinal tap damage. I now have a racing heart which I never had. Everyone beware of antibiotics. I was exercising 5 days a week, pilates reformer, weights and aerobics. Now no muscle left. Thank you for being here. I'm not depressed just sick. 

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