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Old 05-01-2008, 02:07 PM   #1
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I Don't Know What To Do Anymore...

Hello to all of you... I wish you all a better day tomorrow!

I got a serious problem and have no idea how to resolve this one.
I know for a long time already that all opiates slow down breathing, that is why most users are dying during their sleep.
I was for couple of years on Percocet and never noticed any changes. Since I am on LA meds (first on Fentanyl, now on Oxy LA and BT) i noticed how hard for me to go to sleep.
When I lay down feels like something is very heavy on top of my chest. It wakes me up at night. I feel like I can't catch a breath and choke if continue laying. Night before last I woke up at 3 am in such a fear: I couldn't take a breath.
I did not call my cardiologist yesterday, decided to see how will I do during the day. During the day, when I move things are not that bad; night time, while body is resting gets bad.
I had to call last night at 11pm to my Cardiologist since I got really short of breath watching Americal Idols laying in bed.
He told me that he is very against giving opiates for a prolong time, especially to those who have heart problems or have slow heart beat. I normally have very low heart beat and low BP, but it does not bother me on regular basis, unless it goes too low.

He told me that he has to talk to my PM and a possibility taking me off opiates due to a dangerous symptoms I develop with it. I told him that I take them not by choice, that is my life now and I can't imagine to leave without any quality of life at all. AS bad as I am now even with PK i still have some relieve when I take them - what will I do if them discontinure giving them to me?

I went to take shower today, PM called and told my husband he will call me back. I don't know what can I say to him?
What if he will say to stop my meds because he does not want to have any responsibilities if something happens to me? It's very understandable, I don't blame him at all. I did not say about this problem to anyone for a while thinking maybe my body adjusts to it and I will be OK, but this is not something I should hide, is in it?
On the other hand the thought of not be able to be on PK scares me so much, I can't imagine how can i leave without keeping such a severe pain without control? I wish I could leave without them, I don't like the way they make me feel, I am very exhausted all the time, sleepy - but this is the only thing I can relay on at this point of my life...

Any advice? Maybe someone else here has the same problem?
I feel I can't win, no matter how hard I try. So tired from everything...

Best of luck to all of you and thank you in advance.

 
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Old 05-01-2008, 02:18 PM   #2
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Re: I Don't Know What To Do Anymore...

Moldova, my friend....I am so sorry you are going through this. I am not a doctor, obviously, but I am just trying to think of some possibilities. I know, with me, I get that heavy feeling in my chest and shortness of breath at night mostly, and with me it turned out to be anxiety and panic attacks.

The thing is, I don't have previous cardiac issues, so I can't say for sure this is what you are experiencing. It could make sense, considering everything you have been through lately, but I don't know.

I would just be honest with your doc when you talk to him....especially about your fear of living without pain relief. Maybe he can figure out something that is a happy medium for you. I sure hope so. My thoughts and my prayers are with you. I wish I had the answers. Please know that I am here for you..for whatever I can do. God Bless you and I am sending Hugs your way. Please let us know what the doctor says. ((((((Moldova))))))) your friend, cmpgirl

 
Old 05-01-2008, 02:23 PM   #3
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Re: I Don't Know What To Do Anymore...

Moldova, I am so sad to read of your problems. I have noticed since starting oxycontin some strange breathing. It's like my body forgets to breath. So I can relate a little. Thank the LORD I don't have any heart problems so it isn't a big deal to me like it is for you. I wonder if there is something you could take to combat that side effect. I'm sure your PM will come up with something that will control your pain without that side effect. It's good to know you are keeping on top of all this. Just don't worry about stuff until it happens.
Keep us informed, we are here for you.
Fred

 
Old 05-01-2008, 02:38 PM   #4
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Re: I Don't Know What To Do Anymore...

Thank you so much for responds, I really appreciate it very much!

The thing is: not nesessery to have heart problem to get dangerously slow heart beating from opiates. Yesterday it was as low as 40, I can't breath when it gets this low. Arthr, this is exactly how I feel when I lay down: my body forgets to breath. It can happens to anybody, and it dangerous to anybody - does not matter if your heart is healthy or not. If you read about any opiate especially LA, it says that this is the most dangerous side effect and it needs to be reported immideately.
I guess it's all depends how low and if you really feel it or not. Because if you don't really feel it, means not a big deal...

Girl, I used to have same symptoms you have after my second fusion. I was suggested to try Lexapro. I feel no so good, have no anxiety symptoms at all, made a big difference on me.
They use this meds in high doses for depression and low dose as anti-anxiety medication.

Good luck to you; take care!

 
Old 05-01-2008, 03:32 PM   #5
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Re: I Don't Know What To Do Anymore...

Moldova,

You are correct, that respiratory depression is one of the most common, and dangerous signs of opioid overdose. Get that? Overdose. It may be that your dose is too high? It doesn't have to mean that opioids have to be stopped, just adjusted.

There's another thing. Have you ever been tested for apnea? Most often this is referred to as sleep apnea, or obstructive sleep apnea. It takes many forms. When asleep the soft tissues in the back of the throat relax and get in the way of your breathing. They resolve it by applying a mask that provides forced air into your nose, with your mouth closed. The forced air causes the soft tissues to remain taut, and you can breathe. But this doesn't have to be restricted for sleep. It can also be used daytime if needed. This is most often present in those who are overweight and have "extra" soft tissue in the throat. Opioids tend to relax us, including the muscles that keep the airway open throughout the day.

Hopefully your PM doc won't over-react and want to pull your pain meds. I think that would be extreme. I believe there are solutions to depressed respiration other than stopping opioids. Hopefully your doc will identify ways to resolve the respiration issue and keep your pain under control.

steve

 
Old 05-01-2008, 04:05 PM   #6
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Re: I Don't Know What To Do Anymore...

Moldova:
I think Steve may be on to something with the sleep apnea. My ex-wife had this and I diagnosed her, she went to a sleep clinic(they said the same thing), and put her on the CPAP machine at night. If you have alot of snoring or your husband noticed that you stop breathing when you are asleep and wake up choking then this is a tell tale sign that you have sleep apnea. Didn't you say that you have narcolepsy or am I confusing you with some one else?

I have this feeling sometimes too but I think that mine is definitely anxiety and panic. However, if you pulse drops to 40 then this is not good. Maybe you are just on too strong of a dose of Oxycontin. What other meds do you take? any BP meds that can lower it too low? Just thinking out loud.

brian

 
Old 05-01-2008, 04:30 PM   #7
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Re: I Don't Know What To Do Anymore...

Noope,
I have no sleep apnea and never had it. Bad enough that one person in my family has it (my hubby).

And definitely not overdose in here; I have 20 mg Oxycotone every 12 hours, and BT 15-22 mg as needed. I try to take not more than 2 BT a day. So no overdose for sure. It all depends on how everyone's system reacts to it. If you read paper they give you from the Pharmacy, they don't talk about overdose when they say to watch for slow breathing. I guess, my luck - that is it.

Thank you!

 
Old 05-01-2008, 04:47 PM   #8
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Re: I Don't Know What To Do Anymore...

You're correct.

It doesn't have to be an overdose in order to suffer respiratory depression.

It's just that overdose is what you read about the most when associated with respiratory depression.

I sure hope they can resolve this for you - without reducing your pain meds. You've suffered enough already.

Best Wishes Moldova.

steve

 
Old 05-01-2008, 09:57 PM   #9
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Re: I Don't Know What To Do Anymore...

Moldova, With the low doses of meds and the sleep apnea not being a potential problem, I wonder if it is anxiety. As I said in my earlier post I had/have the same sensation of something heavy on my chest and shortness of breath. When it first started happening a year and a half ago, I thought I had pneumonia. I found out a few months later, it was anxiety/panic attacks. I now take Xanax, that was prescribed by the Psychiatrist that I see. It doesn't necessarily happen when I'm in the middle of something stressful. Many times it sneaks up later on in the day or at night when I'm watching TV.

I only take 1/4 to 1/2 mg. when I need it. I don't take it every day, unless I am having a bad bout of anxiety, and that is not often. I am actually allowed to take up to 1mg/day, but I can count on one hand the number of times I've needed to.

I wouldn't be surprised, given the stress you went through recently with the patch reaction. It might not hurt to talk with your doc about it. It even helps with the pain when I take it, and I know some people are prescribed Xanax or another benzodiazapine for pain.

Just thought I'd elaborate a little on my earlier post. Please let us know what your doc has to say. Have a good night and a better tomorrow. cmpgirl

 
Old 05-01-2008, 10:20 PM   #10
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Re: I Don't Know What To Do Anymore...

Hope this doesn't sound stupid, but could it be a form of asthma? Asthma isn't always "wheezing", but rather is often the same "heavy" feeling you describe. When I get mine, it's that heavy feeling combined with restricted breathing. Sometimes I describe it as a person sitting on you. It will wake me up at night. One shot of my inhaler, and BAM...Like new. In fact, I've read where narcotics make asthma even worse.

Just a thought......


Ex

 
Old 05-01-2008, 11:29 PM   #11
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Re: I Don't Know What To Do Anymore...

Hey Moldova, Obviously it needs to be addressed by the docs, but it's not an all or nothing situation, A simple reduction in opiates replaced by an adjunct med like Nemanda or many others to choose from are at a PM docs disposal. A decrease in opiates doesn't have to equate to more pain if the right adjunct is added. I know itís jhard not to owrry but have some faith in your doc and his ability.

We also reach a point where we have to stop increasing a dose or hit a wall due to side effects. although there is no actual ceiling, side effects are the ceiling for everyone.. How severe and how willing someone is to put up with them is the difference between all people. Fortunately the docs have lots of tools that can make up for a decrease that may be as little as 10 or 20% to resolve the problem if it is completely opiate. They have to look at every drug and how they interact, If your taking a sleeping med, that's a problem for some. Not everyone can handle the combination of drugs that others take.

There is no reason to think this is the end of the road if you havenít tried everything. Iíve been doing the PM thing , went through 3 4 week, 8 hour a day programs and there are things I havenít tried because I havenít hit a ceiling I canít manage within my tolerance to all the aspects of medication side effects. There is just too much out there and too much to try for anyone to say they tried it all. You may try all this doc knows and if your not satisfied with the answers or results than you consult other docs. Do it the right way and tell the doc you want to try something he isnít offering if you here about it or you simply know there has to be more another doc can try.

I canít think of why getting a consult from another doc that may specialize in lets pick acupuncture; you havenít tried it and he doesnít offer it, getting an opinion from a PM specialist about other options shouldnít be a problem for either doc when done all above board. If the new doc has something has something to offer and will take over all aspects of your case and care, you simply change docs, notify them, etc etc. Thank the doc and tell him you want to try X, Y or Z. It took me a good dozen docs the first 8 years and 3 surgeries. I was doing anything and everything that could possibly bring relief. What do we have to loose by trying a new combination or adding a new modality? Change can be good thing.

Do get the symptom resolved quicky and than they can look into restoring lost pain relief. The more tools you have in addition to opiates the better off you will feel. Opiates can't do it all so many adjunct meds and therapies to try. I don't know you whole case history, but you may be a candidate for a pump trial. It's certainly easier on side effects but Iím at a point where I really donít want to increase do to side effects. IMO experience there is always a work around. .

Exec mentioned asthma and it reminded me to mention that the synthetics, particular synthetics like oxy generaly cause a greater histamine release, scratchy face, runny nose, a slight speedy feeling are common side efects but for some and for those that respond more severely it may effect respiration at what may seem a lower dose than others. You may accommodate to the histamine effect or it may be what limits the dose. Everyone is so different, there isn't one drug that's better than another, It's what works for you and causes the least amount of side effects. Everyone hits a side effect wall of some sort but it's so different for everyone. You do have to try the adjunct meds and therapies and be open to what's new or even what's old, new isnít always better.. They did manage pain prior to oxycontin, not as well but without the side effects. LOL.
Take care, Dave

 
Old 05-02-2008, 10:54 AM   #12
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Re: I Don't Know What To Do Anymore...

Thank you once again to all of you...
Dave,
reading your post i felt like i was talking to my PM - he called me last night.
He also told me that sooner or later most opiate users face some sort of side effects. Longer we take, higher doses are - more risk of something will go wrong.

He suggested me to have heart monitor attached again; this way they will be able to see exactly what is going on with my heart whle I am on Oxy.
And will go from there.
My PM is excellent, knowlegable Dr with great experience. He works on "big" sports people who get injured (HSS in NYC) together with surgeon from same Hospital. I trust him; going through so many Drs before him I know by now good and bad, you know what I mean? I wouldn't dare go to someone who I don't trust. I do my homework before I go to see any Dr and have questions ready to ask - all prepared.

Very hard to have patient who had during 3 years:
9 epidural shots
2 nerve blocks
2 major multi-level spinal fusions (lumbar) with hardware, metal plates and clips in pelvic area. Decompression/lami. 360 PLIF (sp?)
8 month of PT
Accupancture
Many different medications
1 1/2 years of steroid treatment
Gold shots
Chimo therapy (very low dose to decrease inflammation and pain)

This all ONLY back - pain related and only during 3 years. I don't mention other serious problems and conditions for my 52.
I know I am not an easy patient regarding tolerating meds (for the last year only, I never had problems with it before).

That is why PM and Neurologist are pazzled what next can be done for me since I have a lots of nerve damages after my first fusion droped foot included.
Due to the above I have a problem with levels above fusion due to "domino effect". And it goes higher and higher. Last year I did not have neck/arms/hands problem, I had MRI done right before my second surgery last year, but this year already C and T levels herniations, bulges, and the whole 9 yards.
Pain level: most my days about 6-7. I can handle this, i got used to leave with it, as bad as it sounds. I can't stand when it goes higher than 8, than I am in trouble because meds don't work and I can't do what I want to do and what I love to do.

 
Old 05-02-2008, 11:47 AM   #13
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Re: I Don't Know What To Do Anymore...

Moldova,
There is nothing I can say , but that I wish I could take some of your pain for you. Have you tried sleeping/laying with two pillows under your head so you aren't laying so flat? Do you find that it helps? This would help keep the pressure from your chest some....
jill

 
Old 05-02-2008, 12:03 PM   #14
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Re: I Don't Know What To Do Anymore...

Quote:
Originally Posted by Shoreline View Post
...synthetics like oxy generaly cause a greater histamine release, scratchy face, runny nose, a slight speedy feeling are common side efects but for some...
Dave,

I experienced this just last night.

My BT med is oxycodone. I try very hard not to use BT meds at night hoping that sleep will more of less take care of things. But last night was different. I had to take my full dose of BT oxy and was up for hours past my bedtime. Just wandering the hall and living room looking for things to do or eat. It was crazy. The only other med that ever did this to me was demerol, which I received for post-op pain control for knee surgeries as a kid.

steve

 
Old 05-02-2008, 12:37 PM   #15
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Re: I Don't Know What To Do Anymore...

Jill,
so nice to hear from you. How are you doing? How do you feel? Thank you for responding, very kind of you.
I do use 2 pillows and also like to use reclining chair when breathing is very bad.
I woke up in a middle of the night again from this heavy feeling in my chest, and seat all night in recliner thinking that I have to try to go off my opiates slowly.
Well, didn't happen; I couldn't wait until my next dose of BT, had to take that pain under control.

Steve, seems like you describe some symptoms I experience.
Dave is so right about itching, running nose, speedy feelings.
Like it's not bad enough that we have to take PM, we also have to deal with side effects. I wish I would be the lucky one, but...

 
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