Any Nucynta (Tapentadol) users?

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Bomba
New Member


Date Joined Oct 2010
Total Posts : 5
   Posted 10/5/2010 9:53 PM (GMT -6)   
Hi,

I am curious if anyone is on, or tried, Tapentadol. If so, can you post your impressions of the medication? I'm interested in: your perception of the drugs efficacy compared to other medications you were on in the past, and any side-effects you experienced and their duration.

Thanks,
-bomba

Black Satin Phoenix
Regular Member


Date Joined Oct 2010
Total Posts : 40
   Posted 10/6/2010 11:59 PM (GMT -6)   
Bomba,

My doctor prescribed me Nucynta instead of the Vicodin 10's & the Percocet 10's we were switching back & forth from. I experienced what is called "serotonin syndrome." I was having SEVERE hallucinations. With the anti-depressant I was on, the Nucynta mixed with that as well as the chemicals in my brain & I basically was experiencing an overdose of serotonin in my blood. I lost control of my hands & my eyes kept crossing uncontrollably. There are certain anti-depressants & anti-anxiety meds that interact with it to cause the syndrome. I talked to my doctor about it and he said that has only happened to one other patient he prescribed it to. So the odds are very slim that it will happen to you. Just do your research on drug interactions & make sure none of them counteract the Nucynta.

I hope this informations helps! And I hope that it works out for you!

~Black Satin Phoenix~

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 10/9/2010 7:43 AM (GMT -6)   
Bomba,

First off, welcome to healing well. You will find that many members here are very knowledgable.

Secondly, I have been on Nucynta for 6 months now and am very knowledgable on its effects, efficiency, and risks. I'm going to provide you with details I found on my own via medical sites as well as the details that my doctor has told me. Please take what I say though as just my viewpoint. I'm certainly not an expert and only a doctor or pharmacist is qaulified to give you definative answers, so take this with a grain of salt :)

Ok, I'll start off by explain what nucynta is not. Its not ramped up tramadol. It's not a dervivitive form of the M1 metabolite of tramadol. It is however, modeled to act in a similiar fasion to the M1 Tramadol metabolite. Tramadol itself is very weak, but a small portion of it gets turned into M1 by the liver, which that metabolite is actually has actionable opioid activity. The issue is that only a small portion of tramadol is turned into M1, so its opioid activity is still very limited. The tramadol itself is active as both a medium-low potency Serotonin Re-uptake Inhibitor (SRI or SSRI) and a Norephrinedine Re-uptake Inhibitor (NRI). This makes it a daul action medication that essentially acts as an SNRI and a very mild opioid. In order to get the Opioid activity though, tramadol has to be broken down by the liver. Nucynta does not as it has active Opioid activity on its own and doesn't need to be process by the liver first to be opioid active, so that right there is a huge difference. Nucynta is also a medium potency NRI medication so like tramadol it has dual action. However, Nucynta is not considered a SRI/SSRI, even though it does slightly boost seratonin levels indirectly. The Opioid activity in Nucynta is also considerably stronger than that of tramadol, although weaker than most opioids, so this is a key differance too. Tapentadol is a single molecule medication so the medication is both an NRI and opioid without the body having to break it down. This is very important for people with liver issues or those that don't process Codeine into morphine well.

So to put all that in summary, Nucynta is a moderately strong NRI, so its like combining Prozac and Vicodin in 1 little pill.

Its considered to be 3 times as strong as tramadol as far as pain relief efficiency goes, and to be similiar in potency to percocet. Its moderately potent NRI abilities help to intensify its opioid effects. Its NRI effects also have pain killing properties as it helps to block pain signals before they reach the brain. It is considered to be *roughly* 1/3rd the potency of oral morphine. So 100 mgs of tapentadol is considered (atleast according to studies) to be equipotent to a 30 mg morphine tablet (some sources say its closer to 1/2th the stregnth). 100 mgs is also considered to be roughly = to 15 mgs of percocet (some sources say 10mgs). The fact that trails show the medication to be 1/3rd the potency of morphine is especially important because tapentadol has 18 times less efficiency in binding to Mu Opioid receptors (morphine receptors in the body, the same ones other opioid bind to). It is considered to "activate" the Mu receptor sites very effectively though.

To compare it to other opioids, Nucynta is stronger in its opioid effects than Darvocet and Tramadol and comparable to vicodin, though a bit weaker. Vicodin has 10 fold less binding power for opioid receptors than morphine and as I stated Nucynta has 18 fold less bind power. Its only a somewhat less potent opioid than vicodin though because it activates and "covers" the sites very well. Its NRI abilities are considered to be comparable to but slightly weaker than those of the anti depressant Effexor (keep in mind effexor has to build up for its NRI effects to take place where as tapentadol is immediately active).

Tolerance to Nucynta builds very slowly in comparison to other opioids. Its believed that its NRI effects slow down the body's response to build tolerance. Even after tolerance builds, since roughly 2/3rds of its pain relieving action is attributed to its NRI effects, it still retains pain fighting power after weeks of use.

Only about 36 percent of tapentadol gets absorbed in the GI track (when taken with food, which helps) so in that respect its similiar to morphine as only 25 percent of oral morphine gets absorbed. By comparison, about 90 percent of vicodin gets absorbed. This is why nycynta is prescribed in 50, 75, and 100 mgs tablets, its a moderately potent medication with low absorbtion.

Its considered to be less addictive than percocet, opana, and morphine. However, its considered to be a schedule II because it still has some euphoric properties and its onset of effects is fairly quick, though it does not cause a rush. It does not create the intense "cravings" that some of its stronger schedule II buddies do. Actually it was supposed to be released as a schedule III do to a limited liability. However, do to its "supposed" liking factor and the fact that no APAP is mixed with it, its a schedule II. My PM doctor thinks it should be a schedule III or IV and so do I. If you want stronger pain relief than Vicodin, but are affraid of the addictive risks associated with percocet and opana, I personally think this is a great in-between option.

It's effects last for about 5 hours. The medication literally feels like taking prozac and codeine together, but it feels more like an anti depressant than an opioid. It causes less sedation that most opioid medications thanks to its NE properties. At higher doses, it still will cause the dreaded opioid sedation though. As for side effects, at 50 - 75 mgs, the side effects are almost un-noticable. It causes a slight upping anti depressant like feeling and a desire to socialize, but it very little impairment on cognitive abilities at this dosage. At 100 mgs, the euphoric effects are more noticable but again theres no rush. Also at this dose, after about 2 hours, there is some slight noticable sedation but its very tolerable. At 150 mgs (which is my breakthrough pain dose), significant side effects are experienced and they seem to mostly be related to its NE properties. At 150 mgs, ive experienced mild halucinations and strong anxiety (I have a theory that these might be pre-seratonin syndrome symptoms). However, the NE negative side effects have always went away without serious incident. Its opioid properties are also fairly noticable at this dose side effects wise too though, with strong sedation setting in after the NE effects start to wear off. I accidentally took 150 mgs with a juice mix that had grapefruit in it (i should have checked the label). Well grapefruit intensifies the opioid effect and on that day I felt my breathing slow down. I don't say any of this to scare you guys. For the most part ive had very few side effects, ESPECIALLY when I use it at 50, 75, or 100 mgs (1 1.5 or 2 pills). I'm just stating that the side effects increase DRAMATICALLY at the 150 mg mark. When going off the medication, if you took it for 60 days or less, you probably won't have any withdraw. There is a moderate but tolerable withdraw effect when tappering off this medication after the 2 month mark, with the biggest effect being an energy crash.

As far as pain relief goes, for me 100 mgs generally brings considerable relief for moderate level pain. It bring noticable relief for moderate-severe pain, but at a level 7 pain, it takes about 90 minutes to achieve the desired relief, where as at level 5 to 6 pain, the relief is acheived in about 45 to 60 minutes. At level 8 severe pain, 100 mgs is not adequate and hardly touches the pain. However, 150 mgs works EXCELLENT to relieve even level 8 pain most of the time. A few times that I could rate my pain as level 9 or very severe, the nucynta did very little to help, and in my humble option, I feel this medication is best for those in the moderate to moderate-severe spectrum pain range (5 to 7.5) For those that consistantly have level 8-10 pain, if you can tolerate the side effects for the 200mg max dose, I could see this working.

Overall I would summarize it like this. Very effective for pain and can be used long term. Less addiction risk. Low side effects for low and moderate doses but strong side effects at higher doses. Allows you to go out and live your life due to its low sedation and relatively good potency. My doctor (and from what I've understood other docs feel this way too) feels much more comfortable prescribing this for me than other schedule IIs.

This medication in my opinion is a life saver and has given me a better qaulity of life. I pay a 20 dollar co-pay and without the co-pay, I'd be paying about 400 bucks a fill. However, PM docs have a voucher that will allow you to get your first fill for 25 bucks if your insurance wont cover it.

I really hope this helps :)
MRI revealed a bulging disc w/gel lost at L5 and showed the bulge touching nerves, causing sciatica. Diagnosed w/ Arthritis which is responsible for joint inflamation pain. Treatment: Nucynta 50-150 mgs every 6 hours (schedule II narcotic, Mu Opoid agonist and NE reuptake inhibitor), Celebrex 100 mgs, Klonopin .5, Epidurals, Radio Freq nuerotomy (sept 8th, 2010)

Synthkeys
New Member


Date Joined Sep 2010
Total Posts : 17
   Posted 10/23/2010 10:21 PM (GMT -6)   
Hi,

I have been on Nucynta for a few months now off and on. I finally found out what was causing all my pain (Lyme Disease). Nucynta by itself is much the same as Percocet 10 mg, but for me it was more potent. It definitely causes constipation much similar to morphine and dilaudid. By itself, it's not enough for moderate to severe pain though. But, what I found out by accident and trial and error, was that 60 mg of Cymbalta plus 100 mg of Nucynta, is a perfect combination for me! I can actually live somewhat of a normal life now. I've taken everything from oxy, vicodin, etc., so I know the effects of all these drugs, and this combination is the best. I also tried Lyrica, Nuerontin and Savella with no help before this combination. I hope this helps someone who hasn't found the right combination yet. Good luck and God bless you!

Mark

Post Edited (Synthkeys) : 10/24/2010 3:11:56 PM (GMT-6)


grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 10/24/2010 10:53 AM (GMT -6)   
^Just be very careful and report side effects to your doctor since you are using Nucynta with an SSRI. If you've been on it a few months with few side effects and its benefiting you this will, then I think its well worth staying on.

You are right about the potency, and *personally* I would say its more potent than 10mgs of either codone, but studies put it right at the potency of 10 mgs of oc, so thats what I'm sticking with if I blog about it, lol.

Everyone's chemistry is different and for some people, something like pentazocaine might be enough. Others have to use transdermal patches. Not only does our personal chemistry have an effect but so does our pain threshhold, which also varies A LOT from person to person. One person's poison is another's cure.
MRI revealed a bulging disc w/gel lost at L5 and showed the bulge touching nerves, causing sciatica. Diagnosed w/ Arthritis which is responsible for joint inflamation pain. Treatment: Nucynta 50-150 mgs every 6 hours (schedule II narcotic, Mu Opoid agonist and NE reuptake inhibitor), Celebrex 100 mgs, Klonopin .5, Epidurals, Radio Freq nuerotomy (sept 8th, 2010)

Synthkeys
New Member


Date Joined Sep 2010
Total Posts : 17
   Posted 10/24/2010 1:05 PM (GMT -6)   
Good point on the side effects! The first 5 days of 30 mg and 60 mg of Cymbalta deliver quite a wide variety of hard side effects to get used to. If you can get past that 1st week of nausea, etc. you'll feel fine after that. I think a lot of patients don't know about the side effects and think their always going to experience that. It just takes your body's chemistry a few weeks to get used to and you'll be fine if you're like me. Hang in there! It's worth it!

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 10/24/2010 3:34 PM (GMT -6)   
^Actually I'm kind of glad you brought that up because it reminded me of another reason people have in tolerating nucynta. Nucynta has more in common with Buprenorphine (Subutex, Temgesic) than it does with OC or Codeine. The latter are natural/semi-synthetic. Nucynta is a full synthetic with 2 mechanisms of action. Buprenorphine also has two mechanisms of action, which are just like tapentadol: Mu agonism and NRI. Synthetics are quite a deal different from semi/naturals in structure to as almost all of the latter have a relation to codeine or thebaine. Nucynta on the other hand doesn't even look like an opioid in structure (its closest in structure to effexor, even though its SRI ability is much lower and its Mu activity is much higher than effexor). When you go off a traditional opioid and go on Subutex, either to control withdraw or as a pain medication alternative, you are supposed to wait 48-72 hours if possible because of the risk of high level withdraw from switching over too quickly. Now withdraw can happen sometimes even when switching from one traditional to another, but its still relatively rare by comparison to Bupr. Switching between traditionals of similiar structure = low withdraw risk, but switching from a traditional to a full synthetic of totally different structure = high withdraw risk. (essentially their is less cross tolerance, which causes withdraw AND the medications themselves can cause an increase withdraw)

So what I also think is going on in some cases is that doctors are switching people to Nucynta without informing their patients to tapper down on their current medication, break for 2 days and then switch. Atleast some of the effects ive seen listed by people that had intolerance seem withdraw related. So asside from seratonin sydrome, we have yet another risk factor, withdraw sickness.

You are on the money about the body getting used to the effects. The effects are much much more tolerable after about 2 weeks of taking the medication. For me after 2 weeks ((with the exception of when I had those few breakthrough pain incidents in which I was authorized to up the dose and experienced major side effects)) I had very very few side effects from the medication at my normal dosing. I had less sedation overall than what oc caused, so like I said for me, it was a potent life saver. I hope they do more studies and get more evidence behind the possible negative side effects. I really think the CP family here could reduce or prevent the nucynta side effects that it would really benefits those in the moderate to moderate severe pain group :)
MRI - bulging disc w/gel lost at L5 and touching nerves, causing sciatica. Diagnosed w/ Arthritis which is responsible for joint inflamation pain. Treatment: Nucynta 50-150 mgs every 6 hours (no longer on this... painstakingly tappered off), Celebrex 100 mgs, Klonopin .5, Epidurals, Radio Freq nuerotomy (sept 8th, oct1st 2010)

Post Edited (grainofsalt) : 10/24/2010 2:40:58 PM (GMT-6)


cogito
Veteran Member


Date Joined Oct 2010
Total Posts : 795
   Posted 10/24/2010 8:31 PM (GMT -6)   
I just started Nucynta last week.

I've been on pain meds for about six years and have used tramadol, hydrocodone, oxycodone, hydromorphone and oxymorphone. I currently take Ultram ER 300mg daily and usually use 10mg of hydrocodone (perhaps 3x per week) for breakthrough.

Given that Nucynta has NRI effects, one would expect it to be activating, but in my case, it is the only opioid that is sedating. All the meds listed above prevent me from falling asleep and so my PM has been trying to find something I can take in the evening.


Since filling the script, I've used it twice (@100mg). The first time, it made me very drowsy and I slept solidly through the night. The second time, I had taken 10mg of hydrocodone in the late afternoon and then the Nucynta around 8pm. My sleep wasn't quite as solid, but much better than if I had taken any other opioid in the evening.

Though effects obviously differ, I would suggest a trial of Nucynta for anyone who has had the same problem with insomnia from other opioids.

Stila
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/23/2011 12:29 PM (GMT -6)   
Well,I am new to this forum,but had to post! I took my first pill Nucynta last night! It was pure hell. Fifty milligrams is what I took. I had been on Tramadol 50 mg 3 times a day but could not take care of break through pain I was having. I have fibromyalgia,chronic fatigue,osteoarthrits and degerative disc disease. I seen skeletons,lightening,black clouds,and my heart beat so fast,I thought I would die. All this while awake!I know have been awake 23 hours unable to sleep mad   All I can say is I will never take this again. If you are prescribed this medication,please work closely with your DR. It may not have this result for everyone but did for me. Also there was no pain relief at all. Sorry abt the spelling,I am so tired!

Synthkeys
New Member


Date Joined Sep 2010
Total Posts : 17
   Posted 3/23/2011 7:29 PM (GMT -6)   
Wow Stila! I'm sorry you had such a bad time with this! I've been on it since this last post in August and have been fine. What other meds are you taking with this? I had that same kind of weird reaction one time with morphine and a laxative believe it or not :-) Everyone's chemistry is different though :-) For me, Nucynta plus Cymbalta is a miracle combination for me. One doesn't work without the other in my case, but together...it's the best I can hope for and I've been on everything...all the hard narcotics. Good luck with the search for your best combination and again I'm sorry you had a bad experience with this :-(

Stila
New Member


Date Joined Mar 2011
Total Posts : 4
   Posted 3/24/2011 6:41 PM (GMT -6)   
Thank you ,for your concern,and I am so glad this works for you! The other medications I take are Atenlol for blood pressure. A very low dose,and Synthyroid for a thyroid disorder. I have been trying for the last year to find something to get me out of everyday excruiating pain. Nothing seems to be the right one! Since taking Nucynta,the one time dose. I feel like I am in a fog all the time now. sad   I hope this goes away. If this medication works for others ,I am so happy,for me I guess it will be a long journey. Stila

Adam24
New Member


Date Joined Oct 2011
Total Posts : 2
   Posted 10/15/2011 4:33 AM (GMT -6)   
To confirm what has I think been said in another thread.
 
Is Tapentadol less likely to affect adversely libido than other drugs?
 
 I have had real problems in this department and I believe I am suffering from PSSD after 20 years on SSRIs.
 
I have  severe sexual dysfunction but now need a pain killer which wont damage my libido any more but will help the 'Widespread Chronic pain'/Fibromyalgia' I have suffered from for 30years.
 
 
 Please note, that this post has been copied and moved to:
 Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 10/15/2011 7:40:49 AM (GMT-6)


trm0002
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/1/2011 1:50 PM (GMT -6)   
First off- symptom(s)- moderate to heavy pain from herniated disc C5-C6.

I have been on Norco-10 for 3-1/2 years now because of it. Late last year (Aug 2010) my doctor asked if I would be willing to try Nucynta 75mg in lieu of the Norco-10. I gave it a shot and will tell you that the 75s are garbage- very slight pain relief in comparison. Three days in, he switched me to 100mg. Night and day difference (surprised me since effectively the dose was only raised 1/3). That said, in comparing to the Norco-10, I found the Nucynta 100s to be slightly better for my condition however after 5-6 weeks on them there was a noticeable decrease in the time they were effective. As I said, initially, they were actually slightly better for me than the Norco but their duration gradually decreased as my system got used to them. What started off as 5-6 hours of pain relief tapered right down to the 2-1/2 to 3 hour range (but still a better relief than Norco for that shortened time period). Not wanting to up my dosage accordingly, my doctor put me back on the Norco-10 at my request. Note for reference that my Norco scripts have been "upped" along the way as well but it was never because of that much of a dramatic decrease in relief over that short of a period of time. Currently I am prescribed one pill (Norco-10) every 4-6 hours as necessary where at the onset I was on one every 8 hours as necessary; but that change was in a couple steps over a 3-1/2 year time period.

CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 11/1/2011 6:16 PM (GMT -6)   
I'll chime in here...

When I first started pain management last October (Oct 2010)...I had been on ever increasing doses of percocet/oxycodone for ~8 months. No matter how much my gp upped the dose, I never seemed to get a reasonable decrease in pain. My very first Pain Doc appt, she suggested I try Nucynta. By this time I was very frusterated in everything, and really had no hope whatsoever that this new drug would do anything for me. I took 1 100mg pill, and 30min later my pain literally melted away. I had forgotten what it had been like to be pain free - I sat down and cried I was so happy. Fast forward to today, I am still on 100mg Nucynta 4x a day, and Opana ER 20mg 3x a day....Nucynta still does the best job at taking care of my pain. The Opana has started to work less well - and I went from 2x a day to 3x a day for that....but my Nucynta keeps on keeping on! Now that the ER verision of Nucynta has been approved, my pain doc is trying to convert to Nucynta ER and use Opana for the IR - because of the great results I see with Nucynta, and a number of undesireable side effects with the amount of Opana I am now taking. To the person that posted about Libido - I can't give you a great answer. My libido is down the drain - but I really think it is the Opana - not the Nucynta....When I succeed in my conversion and lower the Opana, I will let you know if I notice a difference :)

trm0002
New Member


Date Joined Nov 2011
Total Posts : 2
   Posted 11/1/2011 6:29 PM (GMT -6)   
So...you started Nucynta in October 2010? Since then, you haven't noticed a marked decrease in the amount of time the Nucynta lasts between doses? As I said, for me it was actually a better pain reliever but the duration of that relief kept going down and down and down little by little.

CoralToe
Regular Member


Date Joined Oct 2011
Total Posts : 24
   Posted 11/2/2011 12:05 PM (GMT -6)   
Nope - Nucynta has worked for me with the saming timing from day one. It lasts almost exactly 4hrs - no more, no less. Everything else I have been on has either had to be increased either in dosage or frequency - except this...

Daniweb
New Member


Date Joined Apr 2012
Total Posts : 2
   Posted 4/25/2012 9:46 PM (GMT -6)   
I recently found this site and have learned a lot of valuable information about Nucynta. I have been in chronic pain lumbar region for about five years. I've had two fusions L4-5 and L5-S1 in 2008 and 2010 respectively. I have taken OxyContin, Percocet, Dilaudid and am currently taking Norco 7.5/325 (recently reduced from 10/325) 5x per day, Soma 4x/day, Neurontin 900mg 3x/day, Elavil 100mg at bedtime to help me stay asleep and Lexapro 20mg at bedtime for depression related to chronic pain (I know you all understand this). Recently this past February I underwent radio frequency ablation of facet joint nerves at four levels on each side right and left. This procedure is what has allowed me to cut my Norcos from 10s to 7.5s. I still have moderate to severe pain at times but my meds are a bit more effective now. Can anyone tell me if a switch to Nucynta would be something I should try? I just learned of this medication from my husband's friend who has back problems dating back further than mine who has tried everything. He says nothing has ever worked this good. I am interested because I know I will be in pain the rest of my life (been told by numerous docs and a pain psychologist) and I'm really worried about the long term effects of taking so much acetomeniphen. Any words of wisdom for me? I have an appt with my Pain Management on Monday to discuss Nucynta but would like a little feedback from the real world of pain sufferers. Any advise is greatly appreciated.

AngMichelle
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Date Joined Apr 2006
Total Posts : 788
   Posted 4/25/2012 9:50 PM (GMT -6)   
The first two weeks I took it, it worked great and actually was sedating compared to Hydrocodone kind of makes me hyper. By the third week the sedation was less, but my tummy couldn't handle it. I had a lot of vomiting, which is no fun after surgery.

Alot of docs like this med though. So we will see!! Good luck!
27 years old
Dx's: Depression/anxiety, Non-Epileptic Seizures, Migraines, repeat joint dislocations, suppressed immune system
14 Major surgeries
Meds: Cymbalta, Vyvanse, Valium, Trazadone, Ambien, Loratab

fireflyhillary
Regular Member


Date Joined Jan 2012
Total Posts : 148
   Posted 4/26/2012 7:56 PM (GMT -6)   
I started Nucynta a couple of weeks ago and it has worked great for me. Previously I was on Percocet 10/325 twice/day....That was not doing a thing for me. So, I was put on 75mg of Nucynta 3 times/day, which was fine, it's just that it only lasts for about 3 hours for me. Had epidural's last week and since the Nucynta was helping my Dr put me on the Extended Release because it lasts longer...So, now I am on Nucynta ER 100 every 12 hours and then Nucynta 75 for my breakthrough pain. I've only needed the regular Nucynta for breakthrough pain once- today, but it's because I gave my dogs baths. I have not really had any side effects- a little drowsiness, but that doesn't bother me as the Percocet's kept me up. I had mild hallucinations the first time I took it, but that's it. I am very happy with this medication as it's given me much more relief than the Percocet's ever did. I actually was at a pain level of 2 at one point today, which is amazing for me. This is a miracle drug in my opinion.
yeah
Current: DDD L4-S1, Arthritis L3-S1, Facet Syndrome, Interstitial Cystitis, Vulvodynia, Restless Leg Syndrome, Bi-polar, IBS, Fibromyalgia, PTSD. In past 6 months have had epidurals, facet blocks and radiofrequency ablation.
Past: Endometriosis, Adenomyosis, Polycystic Ovarian Syndrome. 3 laparoscopies, 2 cystoscopies, total hysterectomy, appendix & gallbladder removal.

drforensicpsych
New Member


Date Joined Jun 2012
Total Posts : 9
   Posted 6/25/2012 12:13 PM (GMT -6)   

JFYI... Every time you pop that sub-arachnoid space it just makes your back worse. (Epidurals/Nerve Blocks)

I'm going to try to keep this as concise as possible but I truly believe details are needed sometimes in order to help... I NEED HELP!!!

I was in a really bad car accident in 1998...I started having balance issues, headaches that can only be described as being forced to hang upside down constantly and significant loss of vision. I dismissed the balance and eyesight as just being clumsy and the eyesight as genetic. The headaches and the intense pain I began to suffer with...well there was just no dismissing them. I saw ELEVEN doctors who just kept promising pain relief with epidurals...I just felt worse but I kept going. Rheumatologists, Physical Therapists, Orthopedists you name them I saw them...they passed me around like rolls at Sunday dinner.
At a routine eye exam my eye doctor flipped out because he saw papiedema around my optic nerve and thought it was a brain tumor....off we flew to Memphis to meet with a very rude neurologist...who had me in tears within the first five minutes...not because I had a brain tumor...because he was downright MEAN!
He suspected a condition called Pseudotumorcerebri...your brain stops regulating the pressure or the amount of fluid your brain is floating in. He performed a spinal tap right there in the exam room...my opening pressure was 582....normal folks run between 60-110.

Everything changed that day in 1999. I acquired a NEW neurologist, neuro-ophthalmologist, neurosurgeon, neuro-ophthalmic surgeon and an Annapolis graduate military GP. Notice there is no pain specialist listed... Well I diligently tried. After the PTC diagnosis I had 54 spinal taps to lower the spinal pressure until I had a Ventricular Peritoneal shunt placement in 2008. I had two VAD implants as well as an optic nerve fennestration in which they take your eyeball out clip the nerve and put it back in. I have DONE everything the Drs have asked of me..every pill, no matter how sick it made me, every surgery...the only meds I cannot take are ie. Celebrex,Advil,Ultram ect.. I vomit blood from those.

My headaches can only be described as if someone held you at gunpoint forcing you to hang upside down. After all the spinal punctures my back is forever ruined..their words not mine. Pain scale of 8-9 in lower back, hips and thigh muscles. I have significantly diminished vision, zero depth perception, altered balance...therefore I fall quite frequently.
Diagnosed dysthymia more accurately Major Depressive Disorder. Severe panic and social anxiety from PTSD after being drugged and raped.
I attempted to go to our local Pain Management Clinic. I brought every CT,MRI, X-ray and my full chart so that whomever I saw would know that, I had followed every Dr.s instruction to the letter. When the DO walked in(I swear he didn't look old enough to shave) he glanced at my chart, and said you are not a candidate to help as your Dr.s have recommended against the use of epidural injections and he walked out. I started crying and could not stop...I was so tired of hurting. I haven't driven in years so my 62 year old Mama drove me to my GP where he took me in his office and I said I just couldn't do it anymore. I never in 12 years asked him for pain meds but I had given up. So he prescribed Nucynta.

These are my meds:
Prevacid 80mg for esophageal ulcers
Zonegran 200mg for migraines
Skull and Neck injections of Botox every three months for migraines
Prozac 40mg SSRI
Wellbutrin 150mg SSRI
Zanaflex 20mg for muscle spasms
Estradiol injection once monthly HRT
Phenergan 50mg prn
Xanax 3mg daily
Lyrica 600 mg daily
Ambien 10mg @ bedtime
Nucynta 75mg 1 tab up to 4 times a day

Two things have happened in the last month that are really scaring me.
One... My GP of 12 years had an incredible opportunity for his youngest daughter to attend the Univ of Georgia and he couldn't turn it down...so he's gone. Now I have NO ONE who really KNOWS me and that I trust with supervising my meds.
Two... The Nucynta has stopped being as effective as it was when we first started it almost two years ago. I'm terrified to ask this new Dr.because I don't KNOW him at all...and I definately don't want to be LABLED DRUG SEEKING!!

If anyone has ANY suggestions PLEASE PLEASE reply.
I BELIEVE with all my heart that GOD did not put us on this earth to be miserable.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11390
   Posted 6/25/2012 1:26 PM (GMT -6)   
Hi Drforensic and welcome to the chronic pain forum. If you don't mind since you wrote a very nice post above, please repost this in a separate new post introducing yourself to the forum. By posting as you did not many of our members will see it and be able to give you a proper hello and welcome aboard. When a new member comes along we like for everyone to be able to greet that person. Thanks so much.... Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

EMTJenn
Regular Member


Date Joined Feb 2009
Total Posts : 28
   Posted 7/1/2012 10:15 PM (GMT -6)   
drforensicpsych said...

JFYI... Every time you pop that sub-arachnoid space it just makes your back worse. (Epidurals/Nerve Blocks)

I'm going to try to keep this as concise as possible but I truly believe details are needed sometimes in order to help... I NEED HELP!!!

I was in a really bad car accident in 1998...I started having balance issues, headaches that can only be described as being forced to hang upside down constantly and significant loss of vision. I dismissed the balance and eyesight as just being clumsy and the eyesight as genetic. The headaches and the intense pain I began to suffer with...well there was just no dismissing them. I saw ELEVEN doctors who just kept promising pain relief with epidurals...I just felt worse but I kept going. Rheumatologists, Physical Therapists, Orthopedists you name them I saw them...they passed me around like rolls at Sunday dinner.
At a routine eye exam my eye doctor flipped out because he saw papiedema around my optic nerve and thought it was a brain tumor....off we flew to Memphis to meet with a very rude neurologist...who had me in tears within the first five minutes...not because I had a brain tumor...because he was downright MEAN!
He suspected a condition called Pseudotumorcerebri...your brain stops regulating the pressure or the amount of fluid your brain is floating in. He performed a spinal tap right there in the exam room...my opening pressure was 582....normal folks run between 60-110.

Everything changed that day in 1999. I acquired a NEW neurologist, neuro-ophthalmologist, neurosurgeon, neuro-ophthalmic surgeon and an Annapolis graduate military GP. Notice there is no pain specialist listed... Well I diligently tried. After the PTC diagnosis I had 54 spinal taps to lower the spinal pressure until I had a Ventricular Peritoneal shunt placement in 2008. I had two VAD implants as well as an optic nerve fennestration in which they take your eyeball out clip the nerve and put it back in. I have DONE everything the Drs have asked of me..every pill, no matter how sick it made me, every surgery...the only meds I cannot take are ie. Celebrex,Advil,Ultram ect.. I vomit blood from those.

My headaches can only be described as if someone held you at gunpoint forcing you to hang upside down. After all the spinal punctures my back is forever ruined..their words not mine. Pain scale of 8-9 in lower back, hips and thigh muscles. I have significantly diminished vision, zero depth perception, altered balance...therefore I fall quite frequently.
Diagnosed dysthymia more accurately Major Depressive Disorder. Severe panic and social anxiety from PTSD after being drugged and raped.
I attempted to go to our local Pain Management Clinic. I brought every CT,MRI, X-ray and my full chart so that whomever I saw would know that, I had followed every Dr.s instruction to the letter. When the DO walked in(I swear he didn't look old enough to shave) he glanced at my chart, and said you are not a candidate to help as your Dr.s have recommended against the use of epidural injections and he walked out. I started crying and could not stop...I was so tired of hurting. I haven't driven in years so my 62 year old Mama drove me to my GP where he took me in his office and I said I just couldn't do it anymore. I never in 12 years asked him for pain meds but I had given up. So he prescribed Nucynta.

These are my meds:
Prevacid 80mg for esophageal ulcers
Zonegran 200mg for migraines
Skull and Neck injections of Botox every three months for migraines
Prozac 40mg SSRI
Wellbutrin 150mg SSRI
Zanaflex 20mg for muscle spasms
Estradiol injection once monthly HRT
Phenergan 50mg prn
Xanax 3mg daily
Lyrica 600 mg daily
Ambien 10mg @ bedtime
Nucynta 75mg 1 tab up to 4 times a day

Two things have happened in the last month that are really scaring me.
One... My GP of 12 years had an incredible opportunity for his youngest daughter to attend the Univ of Georgia and he couldn't turn it down...so he's gone. Now I have NO ONE who really KNOWS me and that I trust with supervising my meds.
Two... The Nucynta has stopped being as effective as it was when we first started it almost two years ago. I'm terrified to ask this new Dr.because I don't KNOW him at all...and I definately don't want to be LABLED DRUG SEEKING!!

If anyone has ANY suggestions PLEASE PLEASE reply.
I BELIEVE with all my heart that GOD did not put us on this earth to be miserable.
 
I have been reading your posts and talking to the doctors that I work with, I work in a ER and I am a EMT.  There are some things I find strange.  The fact you have had over 50 LP's and your neuro or neuro surgeon has been OK with either doing them or continuing to do them before suggesting you get a VP shunt which does drain the extra CSF off so your headaches should be better, but like I was thinking and the doctors were saying as well they had a hard time believing your doctors were OK with that many LP's.  I have PTC with intercranial hypertension as well and my next step is a VP shunt but I have several other issues that my doctors want me to go on disability for, but I am still fighting it. 2nd the barometer that checks for you opening pressure doesn't go as high as you said your readings are, and then looking over your meds.  The main med that someone with PTC is on is Diamox and I dont see that you are taking that nor do I see a med like what I take Inderal to control the IH, also you said Zanaflex 20mg's, smhair I too take Zanafkex it comes in either 2 mg's or 4 mg's, so are you saying you take 5 of these a day??  I am bringing up these questions because your doctor is not doing you justice if they have you on that much Zanaflex, how do you function on that amount?  And the fact they were OK with all those lumbar punctures???  THAT is what blows my mind.  Your talking about pain mgmt when narcotics usually make a PTC headache a rebound effect.  If all of the above is correct you need to find a new docor (neuro) and NOW, cause none of this makes sense.  Wha state are you in, maybe I could help you find a new doc and a doc that will RX meds that are not narcotic in nature so you could see if you stoped having rebound headaches, or maybe he needs to make sure the shunt is working properly because you headaches should be better@@ Jang in there
 
Pink

 

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 4994
   Posted 7/1/2012 10:34 PM (GMT -6)   
I locked this thread as it is over two years old, and were not even addressing the original poster here at this point.

Jenn…the member you are referring to has started a new thread as was suggested by Straydog. You may find it on the 2nd page or so and respond to the member there. I think you have some very valid questions, and I would be interested in her responce.
 
  If you have trouble finding the post, send me an email, and I will hot link it for you.

Thanks!

SE wink
Moderator Chronic Pain Forum

Weekly Quote!

"If you trust Google more than your doctor then maybe it's time to switch doctors"

Post Edited (Screaming Eagle) : 7/2/2012 7:50:58 AM (GMT-6)

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