About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (1461)

46 minutes ago · still working with small fiber neuropathy in Neuropathy

@rwinney Yes, I had both eyes done last year – cataracts. I'll add secondary cataracts to my list of things to ask the doctor. Thanks.

Jim

12 hours ago · still working with small fiber neuropathy in Neuropathy

@swartzki

Hi, David. I'm still here. Depression is managed by a few medications right now. I'm between therapists and would probably benefit from finding one. The last one I had was on a very different plane than I, so I stopped seeing her several months ago. This week my PCP told me that she was gone and there is a new one. Maybe one of these days I'll get an appointment to meet with him or her.

I'm feeling like my meds are keeping serious depression at bay, but it feels artificial. Maybe that's not the best word. Depression is at the surface of my consciousness, with thoughts of death not far behind. Of course it's not a straight line. Up one day and down the next. The psychiatrist called it depressive bipolar. As a rule, Sundays are good, going to church. I wish it wasn't a 30 minute drive because it's a lot of driving there and back for morning service and the same for the evening. The road has places that never thaw when it's cold as it is now, and the drive home is really hard because of oncoming headlights. Driving in general is becoming problematic because of my double vision. I have to keep extra focused. I have an appointment with the ophthalmologist in February and I hope he'll help me with it. If I look at a sign, I see the sign itself and a second one, less focused slightly above and to the left of it.

Diplopia is just one more sign of autonomic neuropathy. I don't know if there's any treatment for it. Special glasses work for some people.

Hope all is well with you.

Jim

2 days ago · Anyone here dealing with peripheral neuropathy? in Neuropathy

@sparshall

My youngest sister has had MS for quite a few years, as well as pn. I was tested negative for MS, for which I'm grateful. I feel embarrassed for talking about my pain when I read and hear the stories of others who are suffering way more than I. I'm reminded of how fortunate I am and how generously God has provided for me.

Thank you for the explanation.

Jim

3 days ago · Anyone here dealing with peripheral neuropathy? in Neuropathy

@sparshall

I have idiopathic small fiber peripheral polyneuropathy. I'm not familiar with the implication of the added "inflammatory". The neurologist has mentioned the demyelinating aspect, but never used it in the name of the particular neuropathy I have

I've seen others mention IVIG, but have never asked my neurologist about it. I had a spinal cord stimulator implant in June of 2017, and it made a major change in my pain level.

Finding a definitive cure for neuropathy would be great, but I'm not sure it will happen in my lifetime. Someday. In the meantime we do what we can to manage the changes as they come.

Jim

4 days ago · still working with small fiber neuropathy in Neuropathy

@swartzki

I tried quite a few antidepressants before I found that Wellbutrin 240mg was effective, in 2006. A year or so ago I was starting to be quite depressed and suicidal again, so I talked with the psychiatrist about it and he started Mirtazapine 45mg. That's been working for me, though I have been feeling a low grade depression for a couple of months.

I take Clonazepam, and St. John's Wort, which also can be helpful for depression. I also take morphine sulfate contin and Imipramine for neuropathy

I take Generlac, aka Lactulose, for constipation. It does the job fine. It's a prescription, covered by Medicare, so no cost for me.

In 2005, I was beyond depressed, too, and it took 5 years of medication and therapy to climb out of the hole, and several more years to shake off the compulsive thoughts of suicide.

4 days ago · still working with small fiber neuropathy in Neuropathy

@ecc79

I've tried all of the meds for neuropathy, but every one caused unacceptable side effects or had no effect on my sfpn at all. Lyrica was starting to help me but before I got up to full dose the side effects put me in the hospital for a few days. I was incoherent, could hardly walk, couldn't put together a complete sentence and had no memory.

I suppose you plan to continue to take the Gabapentin for at least 6 weeks. That's how long it takes to be able to assess whether or not a medication will work for you. Several of my siblings have found that Gabapentin worked for them. Patience and persistence are two qualities to exercise during the sometimes frustrating process. I spent 2 or 3 years searching for the antidepressant that improved my depression, and much longer than that to come up with a combination of meds to treat my pn. And I'm afraid that what's working now may not work a year from now. It's a process of trial and error that could take a couple of months or 5 years. We just keep experimenting until the Voila! moment comes.

Jim

5 days ago · Suicide crisis line is dumb in Mental Health

It was around age 55 that I went through a very difficult time. I tried to od several times. After an emergency visit to my doctor, to tell him what was going on, I decided to self admit to the only facility in my area. It was a nice, new place, with one hallway to 6-8 men's bedrooms with a common bathroom, and another similar wing for women.

It having been in operation for only a few months, there were glitches that needed to be resolved, especially with staff.

I stayed there for six weeks, around ten times the usual stay. I knew that if I left I'd be dead within a week, so I stayed until I felt sort of safe.

That was in November and December of 2005, and I'm still alive. That's thanks to my support system – my wife, my faith, a revolving door of therapists, a psych service dog and a bunch of good doctors.

Calling a suicide help line wasn't anywhere near my line of vision. Why would I call someone to have them try to stop me. It just seemed totally irrational to me. But, of course, I wasn't using my rational mind during those times, so what seems rational to a suicidal person is just the opposite of what most people would call rational.

Now, 14 years later, I am in a much safer place. I retired after the suicidal portion of my life, at 55, moved to a new place close to medical professionals, and live on ten acres 7 miles from the nearest town, but an hour away from the city where there are every kind of specialists and a good hospital.

Medications and therapists keep my mental state stable, though I don't have a therapist right now. The last one was really good, but he moved away after just one year. I felt somewhat devastated and I still miss him a year later. The hospital hired a new therapist, and I saw her for a few months, but I couldn't establish a rapport with her, so I stopped seeing her. Unfortunately, the therapists that work for the hospital are the only ones who accept Medicare. Living on Social Security doesn't allow for what amounts to luxuries, like therapists.

I've been, as I said, medicated to keep me stable, but what is stable for me would most likely be fairly depressed to others. Being stable means that serious depression and anxiety, etc., are really just under the surface, and I'm told that I am a professional at wearing a mask.

But back to suicide helplines. When I'm in a suicidal bubble, calling 911 or 988 is dumb to me. I don't want anyone to know that I'm swallowing a bottle of opioid or antidepressant or Clonazepam or whatever pills I have access to. I want to be left alone as I put myself out of my misery. Thankfully, it's been a long time since I was in that state. I still think about it but it's not a compulsion.

I agree that our country needs a more accessible mental health system. The small town nearest me is sorely lacking. There's more help in the town that's 30 miles away, and even more in the city that's 50 miles away, but they might as well be 1000 miles away as far as my budget is concerned. So, I tighten down the strings on my mask and keep on forging ahead.

Jim

5 days ago · Suicide crisis line is dumb in Mental Health

@gingerw Thank you, Ginger. Having this forum to share my thoughts and feelings is most helpful, especially right now as I have to work at it to keep going on my own.

Jim