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Posts: 12
Reply with quote  #1 
I currently take dilaudid in pill form to control my pain when I'm not in the hospital, but my pain management doctor wants me to consider doing a trial with a pain medicine pump.  I'm trying to do my research on a targeted drug delivery pain medicine pumps (by Medtronic) and I wonder if anyone here has used one before specifically for their CVS pain and how did it work for you?  What was your experience?

My CVS pain is in my epigastric area and it starts out as a progresses to a knot that just keeps getting pulled tighter and tighter as the nausea worsens and vomiting becomes more frequent...until I'm hunched over/curled up in a ball (this phase is known as "turtle mode" according to my husband).

If your pain is anything like mine and you've used a pump or know stories of someone who has, please share with me what you know.


Posts: 166
Reply with quote  #2 
 I know that pain, check out some of my posts. I am pretty sure I posted one time about this one.
Providing we're talking about the same thing, mine starts out with a small pain in the middle of my chest and spreads up and down, mine is also off to the left side just enough to make me think it is my heart.
Starts slow and then quickly the pain get so bad I have passed out! the first time I was sure I was having a heart attack. I started getting cold from my feet up, I told the person I was with "I think I am having a heart attack, it started getting dark and I said good bye. next thing I knew there were EMT's all over me and off I went to the ER.
I have been using the same medicine but I can't take pills when it's happening so I use Dailaudid suppositories. this med was hard to get for a while, they said at the ER there is a nation wide shortage that now seems to be over. I tried using morphine but it's not as helpful.
I never heard of the pump you're talking about, what is it? funny you are one of the first people who has talked about getting the same pain I get. (that I remember) getting old.

Posts: 52
Reply with quote  #3 
Hi Missy,

I'm very curious as well to learn about the pain pump you're describing.   We (my partner is 20+ years into a CVS diagnosis) MAY have had some recent progress. I've been hesitant to write about until we know if he's just finally ended an 18 month cycle or whether we're finally crossing a line of healing, but here goes.
We spoke last summer with Dr. V..  He had been consistently sick - no longer episodic but chronic/coalescing - for several months at that time.  When we described the pain, she said PAIN as the primary factor leading to vomiting vs. nausea/vomiting as the primary factor resulting in pain (he has no nausea ever) was likely a sign of either an opiate problem, which luckily was not our issue, or Abdominal Migraine.  It was a brief conversation but we continued pursuing the migraine route head on, noting that we had actually been successful in eliminating his head migraines several months earlier when we removed gluten and processed foods from our diet.  But though the headaches stopped, the endless extraordinary pain and vomiting continued.  

So we continued approaching this from several different angles.

I From a migraine perspective
  1. We saw a new neurologist who turned out to be an absolute waste of time  (seemed to think that this was a 20 year rebound from NSAIDs despite the fact that he hadn't had ANY for months at a time without improvement and couldn't understand that the migraine was in his stomach not his head.)  But we did become very conscious about using the NSAIDs, avoiding them whenever possible.
  2. We applied the Threshold Theory.  We are on a completely anti-inflammatory diet, no sugar, no processed foods, etc and did an Ayurvedic assessment to guide us (which we follow but not strictly) on our food choices.  This ancient medicine practice believes all stems from the gut and makes a lot of sense to us.  He skipped with a practitioner in India, I did a 10 min assessment in a book.  Luckily we have the same primary dosha (constitution?) , which makes things easier in terms of cooking.   The key is that he doesn't have any one specific food allergy, but inflammatory foods when combined with other sources of inflammation:  stress, allergies, a cold, etc. make him cross the threshold.  
  3. We learned about sleep disturbances being migraine triggers.  His vomiting was always the most profound upon waking, to the point that he dreaded the pain anticipated for the next morning.  So somehow I read about nighttime breathing/REM sleep and I convinced my partner to go to the ENT.  The ENT found he had entirely obstructed nasal passages and removed large polyps.  We've been doing the saline washes at home.  The change in sleep quality was supreme. 

II.  From the Mayo Clinic in MN, thinking there had been some progress since he was at the Jacksonville Mayo back in 1999.   It was disappointing; they told him he'd already seen the best doctors and there was nothing more they could do for him.  The doctor also scrapped the mitochondrial support supplements recommended by Dr. Boles (CoQ10, L-Carnitine, Vit. B Complex) which I thought was pretty shocking.  However, they suggested a few pain management techniques, and I'm curious to know how they may complement your recommended device.  I'll mention them here:  
  1. They injected lidocaine directly into his belly.  This did nothing compared to the pain of his attack so wasn't a good solution for him, however, perhaps it could help others.  
  2. They suggested he try Capaisin cream, the trick being that it needs to be applied regularly for 6-8 weeks in order to numb the receptors that could be causing the pain.  We tried this upon arriving back home but had a reaction (rash developed) to the first brand we tried so we will try another.  So we don't know how much it could help or not.  We also don't know if the rash was due to an interaction w #3 being used in days before or after.  They gave no discouragement of using the two methods interchangeably but it might be a one or the other option. 
  3. They set him up with a little electronic zapper, like the ones people use on their muscles for sports medicine.  He criss- crosses the nodes over the pain above his belly button and this has helped, though relief is not immediate and it will not abort a full episode. We think it also can cause skin irritation.  However, this is a helpful new tool in our toolkit.    
I don't know about long term health consequences of desensitizing nerves and muscles and worry about all of these methods effecting nerve and muscle function when we're older.  However, with the option being bed or hospital bound, my hope is that once the downward pain spiral is reversed, we will need these tools less and less....fingers crossed!

He has the mitochondrial tests that tie him to migraine, done 20 years back in Jacksonville.  However, the recent Mayo was unfortunately unable to coordinate his geneticist appointment while he was there, so we are now struggling to find someone back in Florida who will see him.  So unknown as of now if this could lead to more help.

III  From the very general perspective of a healthy gut, and namely the very damaging effects of antacids and antibiotics. Because of how sick CVSers can be, likely they've had more doses of these meds over their lives.  Though I don't have CVS, this part applies to almost everyone.  
  1. Antacids are terrible for you.  I had no idea how bad they were.   I believe most people think taking some Tums. Zantac, Prilosec, etc or any of the proton inhibitors are helpful and not extraordinarily damaging to how your body was meant to function.      For reflux we make an apple cider vinegar spritzer - and at this point I can't count on two hands the people who I have randomly had tell me this works for them as well.   I can best summarize as follows. a) The stomach needs stomach acid to digest food.  In fact, we've observed if my partner has an antacid before eating, everything comes right back up, it does not get digested.   b) the stomach requires high acid levels to kill bacteria, it should be so acidic nothing much can survive in there.  When the acid levels are dropped, bad bacteria can work their way into this part of the digestive tract, which can cause all sorts of problems  c) the valve that keeps the stomach acid in the stomach (and not in the throat where nerves exist and one can feel heartburn, etc.)  does not function appropriately (close tightly) when stomach acid levels are dropped. i.e. antacids can cause stomach acid to leave the stomach and enter nerve-ridden places where one can feel the burn.
  2. Almost everyone likely has some damage to their gut lining due to the western diet and medicinal approach.  Natural collagen (home made jello) and bone broth are easy ways to help your body heal this, reducing all sorts of related ills.  
  3. Pre and Probiotics - chances are we're all a bit out of whack between antibiotics and antacids we've taken over our lives.
  4. Detoxing.   We do our best to make sure we are regular (yes, in pooping) and drinking a ton of water.  We've tried a number of things for this, but sprinkling some chia or flax seeds onto things seems to be the best easy way.  This is important particularly for the CVSers who have to take medicine.  Medicine, no matter how helpful, does add more toxins to the system and does have side effects.  
IV From learning more about the Effects of the Meds and Pain
  1. To reiterate, I had no idea how bad NSAIDs and antacids can be for the body.   They are cheap and easily purchased and come with few warnings.  In fact, I've learned they can be worse for the body than more powerful prescription meds.  We've scrapped the NSAIDs almost completely and swapped antacids for the apple cider vinegar spritzers (we mix with fizzy water). 
  2. Pain medicines can lower the pain threshold.  
  3. Pain and being calm are related.  This is of course why so many of the anti-anxiety meds are effective, anxiety exacerbates pain.  
  4. Many doctors clueless to CVS over the years have suggested scrapping all meds due to the above effects. This is the worst outcome of all, it ruins trust and does not stop episodes.   
V  From doing intensive research into the HPA axis.  While this was not conclusive, it was the most descriptive of what we were experiencing and gave us leads to the other paths.  

So our current approach, which has not totally eliminated episodes but has returned our MORNINGs to us, a huge return of energy, and more hope (always good!) can be summarized as follows:
  1. ENT check ups.  The nasal surgery and allowing better breathing during sleep has made a big difference.  
  2. The anti-inflammatory diet, anti-allergy home continues
  3. Full-on-gut repair to heal from years of antacids, etc continues
  4. Lot of water and detoxing always
  5. Being very conscious of the side effects of the NSAIDs
  6. The sports medicine pain zapper 
All this to say, we continue to look to fill out the toolkit and are wary about how long this pause in the cycle will last.  So please do share more about this Medtronic pump!  Is there a particular medicine that goes into it?  

Thanks again,
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