Kind of at a crossroads, and frustrated

My understanding of Ambien from various websites is that it's normally not intended for long-term usage, and that its effects can be magnified when a person is taking other medications (e.g., opiates) that depress the central nervous system or when his immune system may be otherwise compromised.

I got some of my information here:  http://www.drugs.com/sfx/ambien-side-effects.html

.

Picking from the list, some of the less common side effects include:

discouragement, general feeling of discomfort or illness, lack of appetite, loss of interest or pleasure, trouble sleeping, unsteadiness, trembling, or other problems with muscle control or coordination, unusual tiredness or weakness, bladder pain, burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings, lower back or side pain, shakiness in the legs, arms, hands, or feet, trembling or shaking of the hands or feet, change in walking and balance, clumsiness or unsteadiness, lack or loss of strength.

Many of these side effects are considered "rare," but I've seen David refer to nearly all of them as things he's been experiencing.

The Drugs.com website says this about Ambien:  Elderly or debilitated patients may be especially sensitive to the effects of zolpidem tartrate. Patients with hepatic insufficiency do not clear the drug as rapidly as normal subjects. The recommended dose of Ambien in both of these patient populations is 5 mg once daily immediately before bedtime [see Warnings and Precautions (5.1); Use in Specific Populations (8.5)].

Use with CNS Depressants

​Dosage adjustment may be necessary when Ambien is combined with other CNS depressant drugs because of the potentially additive effects [see Warnings and Precautions (5.1)].

Another website (http://www.ems1.com/medical-clinical/articles/681652-Zolpidem-Ambien-Drug-Whys/) says this:  With regard to safety (as will be noted later), zolpidem use was associated in a near doubling of hip fracture risk in a large study of elderly patients (mean 82 years of age). While other agents including benzodiazepines, antipsychotics, and antidepressants also increased risk of hip fractures in the elderly, none had risks higher than zolpidem. (maybe the hip fractures were related to falls caused by drowsiness...this is not spelled out).

 

Obviously, I'm not a doctor or a pharmacist, but these comments seem possibly relevant and I thought I would pass them along.

 

Post Edited (clocknut) : 4/20/2014 11:10:26 AM (GMT-6)

David,

A friend's husband was just diagnosed with osteophytes. I read a link on it and sounded to me a lot like your leg pain. I copied this brief paragraph, but there is a lot more on-line to be read if you google "osteophytes".

Osteophytes form naturally on the back of the spine as a person ages and are a sign of degeneration in the spine. In this case, the spurs are not the source of back pains, but instead are the common symptom of a deeper problem. However, bone spurs on the spine can impinge on nerves that leave the spine for other parts of the body. This impingement can cause pain in both upper and lower limbs and a numbness or tingling sensations in the hands and feet because the nerves are supplying sensation to their dermatomes.

David- I am so sorry to read of your increasing difficulties. I also want to chime in on the 'no HT' point. My husband has been on HT since his PSA did not drop enough after his surgery (18 months ago). I have to agree that YOU do NOT need to deal with the side effects my husband is dealing with. Hot flashes. Burning pain in his feet and lower legs. Back pain. Major mood swings, possibly even depression (he won't talk to a doctor about this). Night sweats. And total loss of any sexual desire (this is most frustrating to him). With your pain issues, HT could totally complicate things. After 18 months, hubby is seriously considering stopping the shots. He says he is about ready to 'roll the dice'.
Prayers continue for you.

worriedabout -

thank you for your first hand input. finally, someone that I think understands my doctor's position.

he feels strongly, that with the level of pain I suffer with, including severe joint pain, and the amount of nerve and radiation damage that's going on in my body, that HT would only magnify and worsen those symptoms. he is basing this on a couple of patient's he had over the years in a very similar PC situation to mine. he has said that the radiation damage is truly a major game changer in what's been going on.

this is the same doctor that won't allow me to take advil, because he has shown me studies, that indicate that advil, even in small doses, can worsen radiated damage tissue even more so. I have, however, on rare super pain days, that I have taken a few, but I have disclosed it to the doctor. but nothing I do often.

I understand and appreciate your husband's plight. especially the burning pain in the legs/feet. its hard to describe to someone. the closest I can, is it feels like my blood is boiling away inside my legs (I know that can't literally happen, of course). then at other times, aside from the burning sensations, it feels like my legs are being tightly compressed, to the point where it hurts bad. you know, like post-op, when they make you wear those leg cuffs that compress and then release, then compress again, but over and over good. except when I get the compression, it doesn't relieve even hours later. so my legs are burning deep inside and being tightly compressed at the same time. sleep, or even getting in a comfortable position is impossible.

I also understand your husbands thoughts on pulling the HT plug, so to speak. that's a decision for him and you to agree upon, no one else can make that choice. QOL issues are very personal, and very subjective, and I for one, deeply respect any patient's choices with QOL. No one can tell another person what they shouldn't endure and for how long.

I hope he finds improvement, regardless of the choice. my best to both of you.

david

Tim,

I react I feel like any other human reacts. Based on the sheer volume of posts over the years, sure the vast majority I have written, are written out of concern, appreciation, gratitude, etc. However, some people know how to push my buttons - and at times, I perceieve that as being done on purpose - because unless I agree with their advice or treatment decisions - I am made to look like I am being disagreeable. Look at this thread alone, and see what my overall attitude is like towards others - it is kind and positive. And it doesn't help when some posters, keep slamming me with the same advice over and over and over again - advice they already well know is against what my doctor(s) advise.

Sometimes, I get great advice, and people are openly thanked for that. Other times, I have already tried the particular advice and I didn't work, or had already been on certain meds being advised.

I am far from perfect, trust me. As a certain good book says, "I am the chiefest of sinners". But I would never keep pushing a certain point with a poster here - if I knew the repetitive advice I was giving them bothered them or annoyed them. I think that would be wrong, and not in the best interest of that poster or even HW in general. And that is what happens here with me.

People around me in r/l, are amazed that I am not all negative, bitter, cynical, or hateful acting. I have to work hard 24/7 not to be so, and sometimes I slip, again I am human. I try hard not to let the pain talk for me, but sometimes it obviously is.

The frustration I face should be easy for someone to understand. I have tried to find answers and solutions for a long time now, and what I am being told by some pretty good doctor, is that there is no easy answer, there may never be a solution, and the pain and fatigue will more like always be there the rest of my life. If each person here was told that in their life, how would they feel or react?

Appreciate your words and concerns As far as those that keep pushing my buttons, I will no longer answer back, or try to justify my choices. Will probably have to use the ignore feature more often, though I am not a big fan of doing so.

David

P.S. You have been around 2 years longer than me, if you think back, have you ever seen me badger or hassle any member here over their treatment choice, or their doctor's advice? I simply don't do that. One of the "rules" here, is we are not to here to do that, even if we don't agree.

Very happy to hear you are on the good side of HT side effects. Like all treatments, it sure seems to vary from guy to guy, Just so many different factors at work in how our bodies react to things.

Looks like your latest PSA is a good number, considering the serious nature of your particular PC, hope it stays that way for you

D

David,

You are right: in your support and advice for others you are very circumspect and caring. One thing that I try to do is to decide if you are asking for advice, looking for support, or just updating us on your most recent medical adventures.

That said, I'm sure that occasionally people will try to "push your buttons" as you put it. But in general I think there is a lot of good advice, most of it from hard-won personal experience with the very same issues you are encountering. I get it about your decision that you don't want to do HT. I understand that some of what you are doing is counter to generally accepted medical guidelines, based on your unique and highly complex situation. (For starters, your long-term zolpidem (Ambien) use.)

I'm sure that newcomers appreciate your ready welcome to the the forum and those of us who have known you for a long time appreciate all that you're going through. In some ways, your posts about your medical journey is like a blog journal, so you really don't want advice, just support. It might be helpful if you write somewhere in your post: NO ADVICE PLEASE. SUPPORT ONLY. That may remind us to leave that advice to your doctors. As I wrote before, you did not, in this thread ask for any advice, so I have not given you any.

I still think that most of us, most of the time, mean well in trying to be helpful. So maybe you can keep that in mind when you are put off by our occasionally stepping over the line to offer advice.

David, I have watched your posts for years. My husband and I have been in the trenches like you and your wife. …Peter is in great pain constantly…after radiation, surgeries, HT and now double ostomies. I understand where you are…Peter will not go back on HT….He will not have chemo…He is done… Di

Thank you.

When I came to HW PC, like the vast majority of men. Newly Dx'd, somewhat scared, and not having a clue what lie ahead of me.

At first, it was no big deal to me. So I got cancer again. (4th time for me). I chose surgery. No big deal, had major surgery in the past. So have my surgery, a month or so to heal, and then on with my life.

That was in October of 2008. By December of 2008, all kinds of problems started popping up, but never could have, or would have believed, that my PC journey would ever evolve into what it did, and is currently. One never knows how to be prepared for something like this.

Never would have believed that my career and working days were over with forever. Never dreamed of having a second bad major radiation event in my life. And never thought I would have a stoma to live with.

Yet meanwhile, an endless stream of men and women keep coming to the portals of HW. Myself, and many others here - just can't turn away from those seeking help, or those that come here scared and in fear. So we stay. And we try to help to the best of our limited abilities and knowledge. And that is what makes HW such a great place.

For those that come here, get "fixed", and move on, I understand and respect that too. That's what I would hope for men. That they can get cured, and that they can go on with the rest of their lives without cancer being in the center of their lives.

No matter what happens on my end to me, I just can't turn my back to those that are here and in need of help, even if that help is just an encouraging word.

D

he feels strongly, that with the level of pain I suffer with, including severe joint pain, and the amount of nerve and radiation damage that's going on in my body, that HT would only magnify and worsen those symptoms. he is basing this on a couple of patient's he had over the years in a very similar PC situation to mine. he has said that the radiation damage is truly a major game changer in what's been going on.

well David, you weren't always in this dire condition and I recall YOU saying that you would never do HT for other reasons, and Sonny basically said the same thing though he later changed his mind.

now you claim the doctor, who very infrequently checks your PSA, is against you being on HT.

i think it's fair game to point out that the story has evolved with time and the main reason your haven't tried HT is because you don't want to. and that's okay but you should just say that.

ed

Tim G said...

In some ways, your posts about your medical journey is like a blog journal, so you really don't want advice, just support. It might be helpful if you write somewhere in your post: NO ADVICE PLEASE. SUPPORT ONLY.

Thank you!

I have been gnawing my fingers down to my knuckles in an attempt to avoid writing exactly what you just said.

Since the knuckles are typing... David, it might be helpful to actually get a blog where you have to approve any and all comments that are comforting to you.

I'm scared to post a suggestion and constantly sending my sympathy would eventually not seem sincere.

Nothing but the best of wishes are sent your way, David. I am so very sorry for your agonizing journey. Your journey literally wears me out, so I can't begin to imagine what it is doing to you.

I do hope someone figures out something soon to alleviate all that ails you.