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Old 08-26-2009, 03:59 PM   #1
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I am so upset, I am going to cry at any minute.....

As most of you know, I have been dealing with this chronic nerve pain for a few years. It is only getting worse and worse. I have tried so many different medications (hydrocodone, oxycodone, Opana, OpanaER, Avinza, Lyrica, Neurontin, Topomax, Cymbalta..and more that I just cannot remember at the moment) and nothing really works well. Some better than others, but nothing takes the pain away. The only thing that gives me relief is steroid epidural injections, but they are only temporary and I have already had my maximum for the next few months.

This is why I am so upset. This past month, my PM doctor took me off vicodin (which was the best relief for me so far) and put me on oxycodone and avinza. That combo made me so tired that I was falling alseep during the day. THey took me off Avinza and kept me on the short-acting Oxy. I was having MAJOR ups and downs (pain and emotional) so PM doctor put me on OpanaER. I BEGGED him not to. I was on that drug about 9 months ago and it did ZERO for my pain and messed up my GI tract so badly, that I had to go to a GI doctor and ended up on a months worth of antibiotics for a terrible bacterial infection. The OpanaER contributed to that.

Anyway. I begged him to try something else..anything (did not name any specific drug). He told me that OpanaER is even stronger than the Avinza that I was on, but since I did not get too sleep from it last time, he wanted me back on it. I told him I tried it for three months and got NO pain relief and he did not believe me. He thinks maybe I was just having a bad flare-up those months and said the OpanaER should work. I then told him AGAIN about my GI problems and he does not believe it was linked to my GI problem.

So....here I am almost 2 weeks into this OpanaER and HATING it more than anything. I have no pain relife. In fact, I am in more pain than I have been in months. My GI problems are starting again and I am beyond fustrated. Also, I think this med is causing me to have mini-emotinal breakdowns. I started crying at a restaurant this weekend because my husband said something to me joking, that I i took seriously. I was so upset, I could not control my emotions. I feel like I am a time-bomb ticking. I remember how horrible I felt on this drug before. I NEVER considered suicide EVER, but I do remember feeling so crappy that I could understand why some people do it. Again, I never wanted to had the urge to, but could just understand.

I just don't know what to do. Everyone in my town including all the orthopedic surgeons and my psychologist tell me this pain doctor is the best in town. Why is he insisting on putting on on this horrible drug. I tried it..i gave it three good months and it was a horrible three months.

I sit here now in a lot of pain and feeling really crappy. It's one thing to be in pain, but then add in this hopelessness that I will never get a good drug combination..it's really is getting to me. I've been on enough drugs to know when they are affecting me mentally, and this one definitely is.

I guess all I can do is express this emotional turmoil to my pain psychologist next week and pray that he talks to my pain doctor. I cannot imagine keeping a patient on a drug that making them crazy.

Thanks for letting me ramble guys. I really appreciate being able to vent here. No one else IRL can fully understand how powerful these drugs are.

jdsun
(oh, the only good thing about OpanaER is I am sleeping a bit better at night)

Last edited by jdsun; 08-26-2009 at 04:02 PM.

 
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Old 08-26-2009, 06:39 PM   #2
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Re: I am so upset, I am going to cry at any minute.....

I would call the doctor up and tell him that the Opana is doing nothing for your pain and is starting to cause GI problems for you. Tell him that you can not tolerate the side effects that it is causing and you want to try something else. See if he would be willing to let you try the fentanyl patch or even Metahdone. You do realize that you have to take something for constipation because nearly every pain med causes constipation (in case that is what the GI problem is you are referring to). I know exactly how you are feeling because I was feeling that way trying to get off of Ultram(tramadol) and started crying at a restaurant and felt suicidal. If this guy does not switch you to something else then I would be looking for a new doctor.

brian

 
Old 08-26-2009, 07:04 PM   #3
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Re: I am so upset, I am going to cry at any minute.....

Sorry to hear things are not going well. I would call up the Doc office and tell the receptionist or nurse that you have an emergency and you need to come in right away. Once you get in there, then I would tell him exactly what you've said here....Very passionately.

I'd also take your husband if at all possible. Not sure exactly why it works so well, but taking one's spouse is often a great strategy...Especially a husband. Maybe it's the teaming up that works, but regardless, it works. I've often used this when I need a dose increase, for example. The spouse can add what he/she sees, experiences, and etc. A third party who witnesses a lot of one's pain, and sees the side effects (i.e. one's disposition), can be very credible..."I've noticed that when she takes this now, she......." or "since taking this, I can't help but notice that......." and so on.

Also, it will harder for the Doc to say "no" to you and your husband in person. It's a lot easier to say "no" over the phone, so that's why I suggest a face to face. This is just simple human dynamics. Plus, a face to face shows them how serious you are. Anyone can pick up the phone and make a call.

As Brian says, if the above doesn't work, then I'd be looking for a new PM. Again, I'm very sorry.

Regards,

Ex

Last edited by Executor; 08-26-2009 at 07:05 PM.

 
Old 08-30-2009, 08:43 AM   #4
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Re: I am so upset, I am going to cry at any minute.....

jdsun, I know what you are talking about. I had the same "experience".

You know, I used to take trileptal(only half a pill!)for 3 days and it made my pain so bad like I wanted to shout. I told my doctor but he didn't believe it. I stopped taking it. I've been told nobody else responding to this drug this way, only me!.

Also, one doctor told me: "no medication will work for you". (been used quiet a bit of medications). You know, I just didn't take this doctor too seriously, it's really mean to talk like that to a patient. But I didn't cry or anything. I just didn't take her seriously. she just doesn't care.

I do know, some people respond to certain medications in different ways. It's VERY possible your doctor has NEVER met anyone like you who responds to OpanaER? the way you do, you know what I mean and that's why he's surprised. But that's not a reason to keep going to this doctor, cause if he doesn't believe you than what's the point.

You've been trying lot's of medications, oh my and nothing really works, huh. I also can't really find any medications that really works well for me. So far, percocet is the only medication(my doctor calls it a druggggg)that works for me. Everytime I'm going to my doctor to "ask" for a percocet perscription I feel like I'm going to get a drugggg supply. horrible feeling indeed.

I've never tried vicodin. but if vicodin works for you then take it again, I guess. what else can you do. or, try percocet, I'm on 2-3 percocet a day, plus vitamin B1 plus drinking 2 cups of milk(I found drinking 2 cups of milk helps), and as you see I"m also a little bit furious and trying to find solutions to this chronic pain.

Where is your pain located if I may ask?.

Last edited by nochange; 08-30-2009 at 08:52 AM.

 
Old 08-30-2009, 10:04 AM   #5
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Re: I am so upset, I am going to cry at any minute.....

No change-
My pain is located in my right buttocks and down the back of my right leg. My pain has increased by at least 50% since starting the OpanaER. Even my husband can see how much more pain I am in. I cannot even make it through grocery shopping without tears. And the emotions....OMG....let's just say I am a ticking time-bomb. I will continue to take the horrific medication until I see my doctor in 3 weeks. If I am still feeling the same as I am now, I will demand he take me off this medication. I am also going to my pain psychologist next week and I am going to tell him EXACTLY how this medication makes me feel.

I don't know if this medication is making my pain worse, but I do know when I am stressed my pain levels increase. So, the fact that I am feeling really crappy emotionally from this med, leads me to believe that YES, it is in fact making my pain increase (from that standpoint alone).

My pain is so high right now that there is NO way I can continue on this medication. The pain is taking over my life completely. My husband told me if he cannot make my apt with me (for work reasons) and my dr. does not listen, he will personally find me a new pain doctor even if we have to drive and hour to find one. He lives me with day and day and see's the pain I am in. I have to remember that this not only affects ME, but it is also doing a number on him as well (and our 2 small children). It's a NO win for any of us.

There is absolutely NO reason why I should be in this much pain every day. I know from these boards that there are more than just two long-acting pain meds available (Avinza and OpanaER). Those are the ONLY two he has offered me, even when I practically begged him not to put me back on the OpanaER.

Thanks for letting me ramble again. I really do appreciate all the kind words and the stories everyone here shares.

I am off to help my 4 yr old with a homework assignment from his preschool!!

jdsun

 
Old 08-30-2009, 07:08 PM   #6
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Re: I am so upset, I am going to cry at any minute.....

Quote:
Originally Posted by jdsun View Post

My pain has increased by at least 50% since starting the OpanaER.
I'm so sorry you are struggling so much. If you do a search on this board, the feedback on Opana has not been positive. In fact, I can't really recall a single positive post. In fact, many have reported that the med put them in WD.

This is because Opana targets certain receptors that other more meds don't. Our pain receptors are responsible for certain areas of our body. For example, the delta receptor is responsible for spinal analgesia. So, if one's med doesn't target this receptor, then you won't get the relief in that area. Many receptors overlap. Opana's clalm to fame is that it doesn't target the receptor that causes euphoria, the mu 1 receptor. However, this receptor is also one of the main pain receptors, responsible for supraspinal analgesia. In short, while euphoria is a negative side effect, it comes along with mu 1 analgesia. So, if you avoid it (to avoid euphoria) then you also don't get the analgesia associated with it. This is why some have gone into WD. Sounds to me like your pain is way up due to this whole situation.


Quote:
Even my husband can see how much more pain I am in. I cannot even make it through grocery shopping without tears.......

He lives me with day and day and see's the pain I am in. I have to remember that this not only affects ME, but it is also doing a number on him as well (and our 2 small children). It's a NO win for any of us.
This is why I suggested that he attend your appointment if at all possible. I realize that he may have work restrictions and his job is important, but attending this upcoming appointment with you is crucial. His attendance may be the difference. Not only can he add to things, but he can probably describe the changes that he sees day in and out. He also adds credibility to your descriptions, but reinforcing what you say. Additionally, it's harder for a Doc to say "no" to two people vs. one. This has worked wonders for me.


Quote:
I don't know if this medication is making my pain worse, but I do know when I am stressed my pain levels increase.
As I explained above, it's not that the med is making your pain worse, but rather, it's not hitting the receptors that you need for proper analgesia. Also, it's common fact that "stress" in general can compound one's pain. So, if your stress levels are up, then so will your pain. Many in PM end up on some type of anti-anxiety med for this very reason.


Quote:
There is absolutely NO reason why I should be in this much pain every day. I know from these boards that there are more than just two long-acting pain meds available (Avinza and OpanaER). Those are the ONLY two he has offered me, even when I practically begged him not to put me back on the OpanaER.
No, there is not any reason why you should be suffering like this. In today's PM, Docs have access to all sorts of options for PM. I will say this and please take it with a grain of salt....Many Docs are just flat out afraid of Rxing meds like "Oxycontin." Thus, they do all they can to use any med but it. OC works so well because it heavily targets the Mu1 receptor, which also is responsible for a large amt of analgesia.

However, there is so much stigma associated with the med (and others), that many Docs are just afraid to Rx it. However, many of these same Docs will use it, but only after trying other meds. I'm not saying this is the med for you, but rather, if you keep pushing, he'll eventually have to try other meds. I don't think there is any coincidence that the two meds he has tried first, neither of which produces any type of euphoria. He may just try these meds first with everyone. Many Docs do this, so he's not alone. You have to keep pushing in order to get the help you need AND deserve! I know it shouldn't be this way, but it is unfortunately.


Quote:
Thanks for letting me ramble again. I really do appreciate all the kind words and the stories everyone here shares.
Anytime! I'm glad to try to help anytime. You know how to reach me if needed. Best of luck to you at your appointment. I'll keep my fingers crossed for you.

Regards,

Ex

 
Old 08-31-2009, 05:46 AM   #7
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Re: I am so upset, I am going to cry at any minute.....

Opana, as Ex stated, hasn't produced great results. Prescribing has as much to do with what is "popular at the moment" as it does with what really works. Unfortunately, Opana is one of those drugs that has been heavily marketed (and lobbied) with physicians, so it gets prescribed. I agree with everyone who suggested that you have your husband go to your next appointment. PM doctors (or any doctor who treats chronic conditions) should treat not only the symptom, but also the family as a whole by making sure the patient is getting adequate pain control. Since the patient's chronic pain affects those around them, family members should have some input as to the patient's progress. Doctors sometimes overlook the fact that their decisions affect more people than just the patient. Have your husband state his concerns candidly but in a calm manner, so that the doctor doesn't feel ganged up on, and I think you'll see some changes. Good luck and keep us posted.

 
Old 08-31-2009, 10:24 AM   #8
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Re: I am so upset, I am going to cry at any minute.....

Thanks again guys. I really do appreciate all the time you put into my threads.

I just got off the phone with the nurse at my pain doctor. I was not going to call her because i was afraid I would throw up some red flags or something. But I finally decided, I DONT CARE. I am in so much pain that I need some relief. I told her that my pain has really increased since starting the Opana and I cannot keep being in this much pain every day. She told me she is going to talk to the doctor and then get back to me.

I am really ready to find a new doctor. He is really pushing the Opana on me and even told me all his paitents have great luck with it. Maybe this is true, but I REALLy have a hard time believing this. I did a search on this board and one on the web, and I find so many negative comments about this drug.

Anyway, thanks again and I'll let you all know what happens. Oh, i forgot to mention that my friends husband is a rep for Medtronic and he programs the SCS. He knows all the pain doctors in the city that is one hour from me. I am going to call him tomorrow and have a long talk with him. Hopefully he can help me find a pain doctor to get another opinion from. Is that bad??? Going to another pain doctor just for another opinion. I would not take any scripts from him...just wanting to know his opinion on my course of treatment and what he might do differently? Is this bad?

Thanks again
jdsun

 
Old 08-31-2009, 01:02 PM   #9
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Re: I am so upset, I am going to cry at any minute.....

Quote:
Originally Posted by jdsun View Post

I just got off the phone with the nurse at my pain doctor. I was not going to call her because i was afraid I would throw up some red flags or something. But I finally decided, I DONT CARE. I am in so much pain that I need some relief. I told her that my pain has really increased since starting the Opana and I cannot keep being in this much pain every day. She told me she is going to talk to the doctor and then get back to me.
There is nothing wrong with calling and providing feedback. Honestly, I think you'd be in more jeopardy if you didn't call and then at your next appt talked about how bad you were. He may ask why you didn't call and if you've made it this long, you can tough out some more time.


Quote:
Oh, i forgot to mention that my friends husband is a rep for Medtronic and he programs the SCS. He knows all the pain doctors in the city that is one hour from me. I am going to call him tomorrow and have a long talk with him. Hopefully he can help me find a pain doctor to get another opinion from. Is that bad??? Going to another pain doctor just for another opinion. I would not take any scripts from him...just wanting to know his opinion on my course of treatment and what he might do differently? Is this bad?
I would think that he would be a great resource. He probably knows all the Docs and what makes each one tic. The anethesiologists are usually the ones who get more aggressive with meds, IMHO.

Best of luck to you.

Regards,

Ex

 
Old 08-31-2009, 02:11 PM   #10
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Re: I am so upset, I am going to cry at any minute.....

Thanks EX! My husband is really going to try and make it to my apt in 2 weeks. And, I have my apt tomorrow with my psychologist. I am going to tell him exactly how i am feeling.

The nurse just called back and they want me to double up on my Oxy (from 15mg to 30mg, 4x a day). If that doesn't work, then I am to call back and he wants to increase the DANG Opana. I just doubled the Oxy and I feel a little lightheaded. Probably because I haven't eaten in TWO hours and also just took the Opana. I have to take the Opana on an empty stomach. SO now I cannot eat for another hour. I should probably not do that again and make sure i have food in my belly before doubling the oxy again. Thats another reason I don't like the Opana. It is so hard taking it 2x per day with the food restrictions....you take it 2 hours AFTER you eat, and 1 hour BEFORE you eat. So I take my first one when I get up 6:30am. I cannot eat until 7:30am which is fine. But my next dose is the problem. I take it at 5pm (pharmacist said its ok to take it a little early). So I have a snack at 3pm...then NOTHING till 6pm.

jdsun

 
Old 09-02-2009, 02:05 AM   #11
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Re: I am so upset, I am going to cry at any minute.....

Hey jd, I'm so so sorry you're going through this. Suffering terrible nerve pain myself, I totally understand how you feel. Some days I just want to die, sounds terrible, doesn't it? It's so sharp and it takes up all your attention.

This may have been covered but why can't you be put on Oxycontin (low dose and work up to see how the GI stuff goes) with Oxy as BT medication? I use this and have found it to be the best for my nerve pain. In some ways I'd prefer morphine because I have trouble sleeping but I'm allergic to it and my PM would prefer me on Oxycontin because it's more predictable. It's also been shown to be more effective than anything for acute nerve pain - that trial didn't include Opana because it was before Opana's time. I've asked my PM about Opana because it's soon to be released here (possibly) and he said that it wouldn't help my nerve pain at all.

Ex discussed the receptors a bit and what's interesting with nerve pain is that none of the non-euphoric narcotics work very well - this is because the mu1 receptor (which does produce euphoria among other things) seems to be the most important factor in the use of narcotics in nerve pain. The suggestion being that mu1 dulls the brains response and reaction to the nerve pain - many PMs don't like this because it's probably the euphoria primarily that achieves this. What is unfair about that is that the patient isn't actually going to experience euphoria (unless they don't have pain) because the brain is soaking it up to dull the sensations. That's a very basic description but hopefully makes sense. Oxycontin targets the mu receptors to a greater degree than any of the other opioids on the market (except heroin), hence why it's so effective....and why so many PMs don't like it. It can be very addictive to those who don't have pain but has shown to be no more likely to cause addiction in CP patients than any other opioid if used as prescribed. If I were you, I'd seriously consider Oxycontin as your long acting medication...and you're totally right that Opana would do nothing for you (sounds like your PM needs to do his research!).

I too get terrible ups and downs from taking short acting Oxy without taking Oxycontin as well - pain ups and downs but also irritability (I start to feel myself winding up as the SA oxy wears down, it's awful for me...and for those around me).

Could you ask your PM to trial OC and see how you go? It sounds like he might have a bit of a fear of it as he hasn't given it to you already but you're in agony and you need proper pain relief. If your nerve pain is as bad as mine (sounds like it - I know exactly how you feel at the supermarket with the 'I just can't go on' tears) then I can tell you that, for me, taking OC (oxycontin) with Oxy for BT brings my pain from a 9/10 (can't cope, can't breathe properly, jumping and jerking from nerve flashes and an almost total inability to communicate) to a much more bearable 6 or so. It's not perfect but I can cope. I do have flare ups, terrible ones sometimes, but I think that's the same for everyone with CP.

Sorry for the essay, I just feel so badly for you. I went through this when I was given massive doses of Tramadol as treatment (made me so sick and ended up giving me seretonin syndrome) and it wasn't until I'd suffered a year of that and ended up in hospital for my op that I was finally put on OC. That was the worst year of my life, the tramadol made me feel sick and dizzy constantly, I couldn't sleep, it was just yuck and it didn't do much for my pain at all.

I'll cut this off now, I hope I haven't bored you. Good luck and please let us know how you get on. I'm glad your hubby is being supportive, you've got a lot on your plate with 2 small childeren and I just don't know how you do it. I'll be wishing you well.

Jem

 
Old 09-04-2009, 12:07 AM   #12
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Re: I am so upset, I am going to cry at any minute.....

I really feel for what you're going through. I'm not familiar, though, with some of the meds you're taking, as I've only been on Vicodin long-term (and tried Oxycontin a few times with no relief). You're not alone with feeling sad, and just tell yourself that the sadness is induced by the meds (and some sadness is normally caused by being in chronic pain).

Just because your doctor is known as one of the best pain docs doesn't necessarily mean that he's doing a great job in your care. From what you wrote, it seems to me like he doesn't listen to you well and maybe he's a bit stubborn. You've given him a chance to help you, and he's re-prescribed meds that were a problem for you...I don't think he should be giving you meds that you had a problem with in the past. Maybe think about finding a new pain management doctor who can take a new look at your pain situation...hopefully it will be a doctor who is open-minded. Sometimes you have to go through a bunch of not-so-good doctors to find a gem. I think one of the great problems in medicine is that doctors don't listen to their patients, which is what's been happening to you.

Anyway, know you're not alone. Pain can really do a number on a person.

 
Old 09-04-2009, 05:43 AM   #13
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Re: I am so upset, I am going to cry at any minute.....

jd,

I take my hubby with me to EVERY PM APPT. For a couple of resaons. First with all the meds I take I can't always remember what I need to tell my PM or what I was going to ask.

Second because my hubby keeps me honest. hate to admit it but I am my mother's daughter. Mt PM will come in and ask, "how has the month been?". I'll look at him and smile and say, "oh, not so bad." My husbands head snaps around and his eyes get big and he stares at me while he utters "LIAR." At this point my PM is laughing histerically. He tells me he can always count on Craig to get the truth. Actually he is good for the little things that i don't notice because I am living it. He is able to tell him I notice that she is leaning this way, or she's worse in the evening or when it's damp..I can tell about the inside feeling, but Craig has a great eye for little things that are off.

And Ex is right. For some reason the doctors tend to take you more seriously when you have your spouse along. I think because it presents a united front and also it validates your comments. AND it's another set of ears to hear what is said.

As diifficult of a time as you have been having, I would have your hubby take time off if need be for this one appointment. You are at a make or break point here.

And another thought for you. Just because this is a great doctor, he may not be the best doctor for you. Not everyone gets along with the same people you know......

hand in there hon, it will get better. I was on Avinza and could not function. I lasted three months before my PM switched me back to MS Contin.For that I am thankful.....

 
Old 09-04-2009, 11:26 AM   #14
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Re: I am so upset, I am going to cry at any minute.....

Thanks again everyone. It really helps to know I am not alone.

And, just when I think I've been handed more than I can deal with..more gets piled on my plate. I started getting these horrific stomach morning migraines 3 years ago (when all my back problems began). Basically, I wake up one morning and feel like I've had 100 beers the night before. My mouth is like a cotton ball, I have a mild headache. I get up out of bed, am white as a ghost, sweating, and feel very sick to my stomach. Then I vomit, and continue to vomit for 5-7 hours straight. It is the worst thing I have ever been though. I had a Brain scan done and many tests. Finally I was sent to a neurologist who confirmed they are morning migraines and I need to find my trigger (if possible, as many never figure it out). Well, 2 years ago I thought I found my trigger. I was taking TONS of motrin for my back pain and trying not to take any narcotics. I finally made the connection and stopped taking motrin. IT WORKED! My migraines stopped and life was good (except for the back pain). That was when I realized I need narcotics to help my back pain and my pain doctor put me on hydrocodone. I took that daily for 2 years.

Last month my dr. changed my meds and took me off the hydrocodone and put me on oxycodone . Two weeks after the change I experienced a minor morning migraine. I felt very off all day and nauseous, but I never threw up. I didn't even think it was a migraine because I hadn't had one in over 2 years and found my trigger (the motrin). Well, yesterday morning I woke up with a full-blown morning migraine. I was sick as a dog all day yesterday. I almost went the the ER to help the throwing-up nauseau. Today I am better, but still feel weak. It usually takes 3-4 days to recover from one of these episodes.

I have an apt this afternoon with my Neurologist to find out what the heck is going on. I am wondering if stopping the hydrocodone is bringing the migraines back? It is just so weird that they stopped when I started taking it and now they are back again.

I CANNOT go through what I did 3 years ago. These migraines come on out of no where and are sooo violent. I literally throw-up every 15 minutes for hours straight. I lost 15 lbs over a 6 months period (and I am only 120lb, 5'8" to begin with).

Please pray the dr can help me with this. This is really debilitating. Not knowing when you are going to wake up and be so so so so sick. My kids need to catch a break too. It's bad enough to have a mom in chronic pain all day long. Now add this to the list. As you can see, this really might be the thing that puts me right over the edge........

jdsun

 
Old 09-05-2009, 03:00 AM   #15
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Re: I am so upset, I am going to cry at any minute.....

Wow, jd, that's awful. Did your neuro put you back on hydro? Sounds like Oxy isn't the med for you. those migraines sound awful, simply terrible - and I know you have kids to look after, which makes it worse.

Thinking of you and hoping you feel better soon,

J

 
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