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Old 04-17-2017, 05:05 PM   #1
old soul20
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I just joined the forum. I suffer from intractable migraines and have for the past twenty years. Although I had some bad migraines prior to that, I never thought I would be in this situation.

All the appropriate tests were run and several medications tried. I was finally accepted into a pain management clinic. There I was started on an opioid with one rescue injection a month. That worked for a while, but anyone who has been on opioids knows that the tolerance to their effectiveness builds quickly.

Anyway, here I am twenty years later on two separate opioids daily and ten rescue injections a month as well as antianxiety medications and a medication for sleep. Fortunately, I managed to escape what I feared most. Addiction. My rescue injection, which makes most people euphoric, just makes me feel much like you would if you had packed for a long trip and knew you had forgotten something critical that you can't buy anywhere

I've lost everything. My career, my savings, the long walks I would take to get my head straight.
Does anyone else have a chronic pain that they feel like because it can't be see, others look at you like you are a drug seeker?

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Old 04-18-2017, 11:25 AM   #2
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Re: New

I have never heard of a "rescue injection." What is that?

 
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Old 04-18-2017, 01:39 PM   #3
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Re: New

A rescue injection is merely an injection that is given for breakthrough pain. I take a number of medications daily, but in spite of this, at times, the pain increases in intensity and I have to give myself an injection of another, non daily medication to get the pain back down to a manageable level.

Its probably not a universal name. It is what my Dr. gave it, so I use the term as well.

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Old 04-18-2017, 02:41 PM   #4
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I hope it helps to hear you are absolutely NOT the only one who has been treated like a drug seeker! In some places it has gotten out of control due to over vedulance. I am sorry for all of your loses too. I don't have your exact story, would never say I know exactly how anyone else feels. But, due to my reactions to antibiotics some don't react to, I became disabled w/chronic pain. In addition to being called an exaggerator, or liar, I have also been treated like a pain med junkie because the surgery to repair my damage didn't miraculously cure my pain. While we didn't get here in the same way, you are NOT alone.

 
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Old 04-18-2017, 08:26 PM   #5
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Re: New

I feel that way somewhat. Especially being a young female chronic headache patient. I've had constant head pain for 11 years, diagnosed as New Daily Persistent Headache, plus episodic migraine. I feel lucky to have received as good of care as I have, although it took lots of work on my part. Some may consider that doctor shopping, although I never got scripts from more than one doctor...I just kept trying new doctors until one actually willing to come up with a reasonable treatment plan.

If you haven't been to a good headache specialist in awhile, it may be worth another try. Some people even travel to see one for a consult, then bring a list of ideas back to a local doctor. There have been a handful of new treatments come out, plus doctors have more experience using older treatments. There is a big difference between a general neurologist and a true headache specialist too. Its pretty impossible to run out of treatment ideas as hundreds of things can be tried, and all of those can be used in different combinations.

Although I've also gone down the daily + as needed opioid route, I've also continued to try standard neuro treatments. My pain doc pretty much requires it. I imagine its a risk for their practice keeping me as a patient vs. a patient with back pain for example with scans which show the cause. It is really rare to get opioids for head pain, and even more rare to be given injectable pain meds for noncancer pain. Although we have struggles, getting any pain treatment, especially with the opioid prescribing climate nowadays, is really lucky. I keep hearing of folks getting dropped as patients, doses reduced (it happened to me), etc. Best wishes.
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Old 04-19-2017, 09:13 AM   #6
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If I run out of my injections 9they are to be given at my discretion), I can't go to the ER. The ne medication that is in my injection Dr.s here will no longer give for anything but post surgical Pain. I've never once asked for more of my medication. My Dr. raises it when things are getting worse because I am so tolerant of opioids. Do you have a pain management clinic around you? They (at keadt around here) tend to believe that your pain is real, whether they can see it or not. The rules are very strict. Each year I sign a contract saying that I will not take any prescription pain med from any Dr.s unless I ask him first. I've known him for a long time and he is a gem.

 
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Old 04-19-2017, 09:29 AM   #7
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I've been with my pain management dr. for 16 years. I dread him retiring. I have a peripheral nerve stimulator with two leads. one over my eye and one under. They meet in the corner of my right eye. because of the curve of the leads and a post op infection, it took twelve proceedures to get it right. It helps a little. my migraines feel like there is extreme sharp and throbbing pain that pushes outward. The stimulator ifeels like counter pressure. I have a hand held remote so I can turn it on or off with a number of intensities.

The clinic requires me to come in three or four times a year to check drug levels in me and see where things stand. Before I met him, I tried acupressure, acupuncture and every migraine drug. They also tried drugs that were not made for migraines, but people on them reported having less migraines and headaches while on the drugs.
At this point, I'm a walking pharmacy and if I got rid of them cold turkey, it would likely kill me.

 
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Old 04-19-2017, 12:28 PM   #8
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Maybe you should try tapering off the drugs as much as possible and try to pin down what is causing the migraines. Have you seen a good ophthalmologist recently? If your eyes are each focusing differently say long distance vs shorter in the other eye, especially astigmatism can throw you off balance, interfere with your distance and space perception, be very dangerous walking downstairs as you misjudge your length of stride. My mom suffered with migraines and what she termed "blind spells" all her life and after it was too late, they finally discovered she had a bone disease described as "smouldering" where symptoms would flare up and subside. The problem is that people and their doctor accept a certain diagnosis and then stick with it forever, not thinking that over the years the body is changing and needs to be re-evaluated. Also your blood pressure can cause headaches if too high. Definitely stop worrying so much about the pain drugs and try to discover what's behind the pain.

 
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Old 04-19-2017, 08:26 PM   #9
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Re: New

Quote:
Originally Posted by old soul20 View Post
Do you have a pain management clinic around you? They (at keadt around here) tend to believe that your pain is real, whether they can see it or not. The rules are very strict. Each year I sign a contract saying that I will not take any prescription pain med from any Dr.s unless I ask him first. I've known him for a long time and he is a gem.
I'm glad you are seeing a doctor that is working well for you. Yes, I see a pain doc. Around here it is getting rare to be prescribed opioids long term by a doctor other that a pain specialist. I too have a contract, although mine thankfully has some leniency. I can go to the ER or get any short term pain treatment I need (like from a dentist or something); I just need to notify them afterwards. I haven't gone to the ER since starting pain management though as I know from experience they won't even give me as high of a dose as I have available at home; they just try non-opiod stuff and say to follow up with your doctor (ie. they don't see chronic pain as a medical emergency).

I have a really good mix of meds to take for breakthrough though, not just my short acting opioids - I have an NSAID, muscle relaxer, Triptan (for migraine), and even Ketamine (compounded capsules). I get severe pain episodes, so often it takes all of it just to make a dent. Best wishes.
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Old 04-20-2017, 05:04 PM   #10
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Re: New

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Originally Posted by KrissyKat View Post
Maybe you should try tapering off the drugs as much as possible and try to pin down what is causing the migraines. Have you seen a good ophthalmologist recently? If your eyes are each focusing differently say long distance vs shorter in the other eye, especially astigmatism can throw you off balance, interfere with your distance and space perception, be very dangerous walking downstairs as you misjudge your length of stride. My mom suffered with migraines and what she termed "blind spells" all her life and after it was too late, they finally discovered she had a bone disease described as "smouldering" where symptoms would flare up and subside. The problem is that people and their doctor accept a certain diagnosis and then stick with it forever, not thinking that over the years the body is changing and needs to be re-evaluated. Also your blood pressure can cause headaches if too high. Definitely stop worrying so much about the pain drugs and try to discover what's behind the pain.

Before I started the meds I have now, they screened me for several things, did MRIs, CT scans, blood work, all that. When we did the journal thing to find cause and effect, there were so many triggers there was no way to avoid them all. After two or three years, back in the beginning when I only had one medication and one rescue injection, I hated the feeling of the drugs so much that I told my Dr. I wanted to stop them. He put me in the hospital and I tried to get rid of them cold turkey. It was hell. Ten days in the hospital followed by over a month of more hell. Since then, I haven't tried cold turkey, but have tried to reduce doses. Even small dose changes start a with drawl reaction along with increased pain.

I saw an optometrist on the 18th of this month and am getting glasses. Hope fully it will eliminate eye strain. I've needed them for a couple of years, but my insurance didn't cover it, and I didn't have enough money to pay for it. Long story.

Its frustrating. Dietary changes, trying to move around more, relaxation exercises. Nothing seems to work. My dr. wanted to do a vascular study, but with my stimulator battery in, it would short it out. Usually I pick one thing I want to do on a given day, then pay for it for two or three days, do something else......... I just try to adapt.

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Old 04-21-2017, 07:19 PM   #11
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Re: New

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Originally Posted by old soul20 View Post
Does anyone else have a chronic pain that they feel like because it can't be see, others look at you like you are a drug seeker?

Old Soul20
Only probably 99% of the folks on this forum. It's a pretty common theme you will come across regularly here, so you are definitely not alone on that one. I particularly dislike pharmacists who want to step in and act like they're your doctor. Want to tell you that you shouldn't be on that specific medicine or why are you taking so much or, oh you get the point. Then they want to hassle you with your insurance coverage. Like I've been told my insurance won't pay for my pain med and I'll be on the phone right then with my insurance company and they're telling me the pharmacist doesn't know how to process my claim properly. And on top of that, he refuses to talk to them on how to correct the problem. That was a particularly bad day! Took me almost 2 hours to get my script filled with this ding-dong at the helm!

So again, you're not alone and welcome to the site!

 
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Old 04-24-2017, 05:50 PM   #12
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My old insurance didn't have a problem with any of my meds, but when I had to go on disability and Medicaid, they wanted them all pre-approved. My Dr. has to call and explain why it is medically necessary and what dose is needed. That goes to a board of probably non-Dr.s who decide if you really need the medication. Kind of makes me mad.

Opioids would not have been my first choice, or my Dr.s. It was only after we had tried several medications with no change that it was decided to use opioids. My Dr. is responsible, spoke with his contacts about treatment to see if there was anything else they could do before starting them.

We discussed a headache clinic, and he said that often times, people with migraines like mine spend a lot of time and money there getting off the opioids, then the clinics can't find another answer and put them back on the opioids. I guess you take what you are given in life.

 
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Old 05-08-2017, 02:10 AM   #13
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Re: New

Hello! ; )

Lol, as others have stated; it's a shame to be made to feel that way-I have come to not even notice or care if someone directs that type of "negativity" my way. It's really none of my business what someone may judge or not; I can't control what someone may think; so I don't waste time or energy worrying about it.

I recently have been dealing with problem headaches,(past 18 mos) from pressure on my optic nerve from a benign tumor; it really sucks though-my main issue is my mid, low back with radiation thru buttocks to lt leg and is severe, sitting is my worst enemy!. I use Duragesic as my la med; and it really helps me although I do struggle with them sticking right, but when they stay on they really help, I have been on every la med you can think of, and fentanyl is still the best one for me-I do have oxycodone(bt) that I hardly take, it doesn't help enough to bother with it, I am allowed 4qd, also have some Robaxin I take sometimes, k-pin .25(prn up to 2qd)motrin 800mg 2-3 a a day prn, Provigil 200 mg in am, and a couple others.

But I can totally commiserate with what you face with the headaches, they can be quite debilitating and the fent helps sometimes with the motrin, but most times I have to wait it out, sometimes to the point of severe nausea with vomiting. The newest thing I have tried(And I have tried so many different modalities and treatments to really no avail)is removing all glutens and processed foods from my diet, and surprisingly it is helping!!!

I try to skip doses of Duragesic, to see if perhaps the pain is at a level I can manage without them, but all I manage to do is make myself more miserable, lol. I try to keep myself distracted in whatever way possible, and not dwell on pain- and I have made it a habit(no pun intended ; ) - ) to NEVER disclose my situation with anyone outside my(VERY) small circle of trust.

I'm sorry that you have to go through all that non-sense with Medicaid-that would drive me bananas too!! I had to go on disablity too, SSDI; I have Medicare though...I have a Medicare Advantage PPO,and they have caused me very little problems.

What really bugs me is not being able to do normal stuff like make dinner, do laundry. etc - I do it anyhow, not every day, it really puts me out of commission and I really pay for it, but I cannot just stop living, you know.

Don't give up!! Any day now one of us may be cured!!!

Good luck !!!
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Old 05-09-2017, 07:33 AM   #14
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the negative feelings that others have I could live with. It is the negative input from the medical community that is a problem. They are the ones who decide when and how much you will suffer. Fortunately, I have a very compassionate pain management Dr. and also an excellent GP.

I'm sorry you are going through your private hell. That is really what it is. No matter how much you try and explain your pain, you can't make someone else feel what you feel to understand.

I get the trying to get around without your medications. More than once I have just stopped, fed up with the way they make me feel or their effect on my life. Its kind of weird. I made it through high school hanging out with a bunch of kids who took LSD, and smoked pot without ever even wanting to try anything harder than pot. That sucked, so I told them it gave me asthma. Now, here I am in my fifties stuck on opioids and anti-anxiety drugs.

I think the worst thing, for me any how, is the isolation. Since its my head that hurts the most and I am extremely sensitive to light and sound, going into a lit room or even dimly lit room is very painful. I have a hard time connecting with people face to face, and the husband and wife whom I have lived with for twenty years feel abandoned. I met the wife my senior year of college, and there was an instant connection. No cheating, it wasn't that sort of connection and the husband was un bothered by my being there. Now, I can't explain why dark glasses and drawn curtains isn't enough. The fear of losing the only person I connect with is overwhelming.

Honestly, I think the severe regulating of controlled substances only hurts the people who desperately need the medications to exist. There will always be those who abuse it, and dealers who sell it. They don't care, they will find a way to deal despite any regulation.

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Old 05-09-2017, 10:24 AM   #15
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Angry Re: New

Hey O. S. -

I have significant photo-sensitivity also.......I cannot go out without my sunglasses; and if I'm with you, and I have somehow forgotten them, and you offer me your spare pair to borrow-I tell ya we have to go back and get mine-because they are super polarized and dark, so I can see well outside without- tearing up and sneezing-and no that is not wd symptoms-the bright sunlight causes me to really sneeze and my eyes to water so bad it blinds me!! My friend tells me that I'm a PIA and just picky-but she has no clue how miserable it is on top of struggling through constant pain, with a smile on your face!!!

Honestly, some days I just want to throw in the towel !!!

That would be selfish I am told, LOL............

I don't think you are in danger of losing your dear friend, unless the husband
is who is throwing that vibe out to you???? It's really great to have someone you trust and can talk to about these things. Nobody wants to be alone on this ride.

I hate some of the crap I get from some of the medical profession too, I was at my pcp for something unrelated to CP, routine stuff; and my doc's nurse
really made me feel like some kinda sneaky junky......she takes my vitals, etc., and then proceeds to ask me what medications I am currently taking; even though I filled out an update form, listing each of them; and I could see she had this form right in her hands, along with a print out from the state PDMP. This really irritated the hell out of me, so I said to her;"is this a test
or are you trying to see if I will lie about something"? She was like, oh no,
not at all".

She continues on and says, I see you filled a prescription on the 25th last , month for #150 oxycodone, and #15 Durgesic patches, and she repeats each drug like that, and I say; "yes, that's correct". SHe says, " and you filled the
Duragesic again last Thursday, and also #120 Endocet??? The whole time she has this condescending tone in her voice, talking to my like I've been a bad, bad little girl......I told her again, "YES, THAT'S CORRECT, the endocet is the oxycodone. She starts to do this again, going even further back into my pharmacy record. So, I said "look, I've been on these medications for a very long time, and I don't appreciate you making me feel like some scumbag junky criminal", "if you don't have a specific question about my medications, please LEAVE, and please tell my doctor I'm ready.....I was so upset, I could feel my face flush, and my musles in my jaw aching from clenching.

Ridiculous.

So, yes; I can relate - big time!!!
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