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Dinah Fay
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/18/2010 9:59 PM (GMT -6)   
Hello Everyone,
 
I have been a peeper for sometime now and thought it was time I posted and introduced myself.  I have been a pain patient for about 10 years now.  I suffer from fibromyalgia, muscle spasms, neuropathy, and generalized epilepsy.  After taking narcotics and muscle relaxers for over 4 years, my neurolgist referred my to pain management for a medtronic pump.  Overall I am doing quite well, but there are always a few bumps in the road.  It is nice to find a site where you can ask questions and share concerns.
 
I have a combination of DIlaudid and Baclofen in my pump.  When I have flair ups, I take additional oral Dilaudid (4mg) up to 4 times a day and Baclofen (10mg) u to 4 time a day.  If my flare up last several days and I take the Dilaudid and Baclofen around the clock, I have started havinf auditory hallucinations.  I hear things.  I sounds like a loud dull thud.  Like someone it hitting a large tree with a 2 x 4.  I hear this noice about every 5 minutes or so.  I was wondering if anyone else has every experienced a side effect like this?   It is horrible, but I really need both meds.  My PM has offerred to change my meds, but I would hate to end up with something that does not work.  I trailed many drugs before I found this combination.  It has been a mircle for me.
 
Sorry this was so long.
 
Dinah Fay

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 11/19/2010 12:29 AM (GMT -6)   
Hi Dinah and welcome to the forums. I'm sorry it's pain that's brought you here, but you'll find lots of great information from people who truly understand what you're going through.

I am on several medications and often have auditory hallucinations - mostly I hear music playing. For me, it's mostly annoying because I'm hyper-sensitive to repetitious noise. I would confess within 20 seconds of the Chinese Water Torture (slow, constant drip)!!

Do your hallucinations happen ONLY when you take the Dilaudid and Baclofen around the clock, or at other times as well? Does the sound cause you pain in any way, or is it just annoying because it's loud? It might be worth asking your doctor to change up the Baclofen to something else...leave the Dilaudid alone. Maybe you try that for a week (ask for samples the drug companies may have left behind) and see what happens, until you find a combo that offers you relief without added sound effects.

I hope you can find a solution quickly. Praying for things to change for the better!

Hugs,
Pam
DX: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain, Surgical Adhesions, IBS, IC-PBS, Carpal Tunnel (both wrists), FAI, Diabetes (just diagnosed), Reynauds, Opthalmic Migraines, Drug Related Hot Flashes, Hard Start for IV's, Unable to vomit due to surgery.

Meds: Oxycontin, Tramacet, Cymbalta, Cesamet, Flexeril, Clonidine + Vitamin D + Multi daily

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 11/19/2010 12:30 AM (GMT -6)   
Hi Dinah!

And welcome to the Chronic Pain forum!!

I too have fibromyalgia along with those wonderful muscle spasms on the side, plus several other delightful disorders to deal with. Like most of us with fibro, it's rarely 'just' fibro alone. I'm sorry you're suffering so much right now but I'm also glad you found us and that you have some medication that is working.

My first question is.. are you or your doctors sure these auditory problems are from the meds?

And have you seen an audiologist or neurologist for testing? Just a couple of ideas to throw into the mix. I sure can see why you don't want to change your meds but those sounds must be about to make you question your sanity some days. It would make me frantic and frightened if I were to experience it.

Don't worry about the length of your post...actually it's very concise, well thought out and to the point. Plus, it's just hard to put pain and discomfort into words some times.

Please keep us posted on anything you learn about this...it causes and treatment.

Warm Hugs,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums

“If you want to live a happy life, tie it to a goal, not to people or things.” Albert Einstein

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 11/19/2010 2:00 AM (GMT -6)   
I was doing some research and hallucinations are a potential side effect of the baclofen. It is listed as rare while taking it and slightly more common if the medication is stopped quickly. I found this while looking through the For Professionals listings for this med.

I would say, based on what I read in various online drug guides and what you said that there is a liklihood that when you are taking the Baclofen around the clock that your body is not tolerating that high of a dose and causing the auditory hallucinations. This is just a laymen's theory mind you but it is probably something you should run past your doctor. It is also possible, depending on exactly when the auditory problems start, ie while taking the oral meds or soon after stopping the extra doses, that the stopping of the oral doses could be to blame.

Exactly when the problems start and stop would seem to be very critical to this issue and letting your doctor know exactly when things happen should help him figure out what needs to be done.

I would talk to your doctor about either limiting, eliminating and/or replacing the oral Baclofen with something else. Leave it in your pump but use something else for the breakthrough.

I hope this gets figured out for you soon and that you can enjoy good pain control without the problems.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 11/19/2010 8:58 AM (GMT -6)   
Hi Dinah Fay,

I am sorry that another person felt the need to seek us out....but I am glad you found us! Welcome to the family! I do not have much experience with this....but I do have bad tinnitus in one ear and that is enough to drive me crazy! I am really glad that you have found meds that help your pain, however! I hope you find a way to get this taken care of! In the meantime....look forward to getting to know you and take care of you!

Beckey
Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus and Possible RA

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16031
   Posted 11/19/2010 9:20 AM (GMT -6)   
Hi Dinah and I too would like to welcome you to Healing Well's chronic pain forum. I am sorry that you have to be here but very glad that you have found the forum and decided to join in. It is always nice to know that you are not alone with your suffering, CP sure tends to make it that way for many of us.

I do not know or have any experience with the type of problem you are experiencing this noise. That really has to be so annoying. I am like the others does it cause you any type of pain and does this happen all of the time or what. I too have a Medtronics pump, mine was put in June of 05. I now have a great dr that knows about pumps and the medications used in them and she has been a life saver for me. We are still this late in the game tweaking my dosage can you believe that!! It has been a very long process is all I can say. When it is time to change my pump out I will not be having another Medtronics put in. She will be having one made by Codman put in and they do not run off of batteries, instead they are powered by a gas and you never have to replace them like the Medtronics pump. I really like that idea.

What does your dr think is causing you to have this problem or have you spoke to him about it yet? It will be interesting to see what he thinks the cause is here.Anyway, I wanted to pop on and welcome you aboard. Please keep us posted on how you are coming along.
Moderator Chronic Pain Forum

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9661
   Posted 11/19/2010 9:29 AM (GMT -6)   
I agree with the others that you need to talk this over more with your doctor, maybe a slightly lower dosage
of one of the medicines might help. It does seems like sometimes we go thru trials and errors
trying to get that one perfect medicine to work, hopefully you'll be able to work thru this with
your doctor. Usually with the pumps (from what I've learned) is that it does have far fewer side
effects as it by passes the stomach. So maybe trying a new med might not be so bad, but it's
your body just think it over, I don't intend to try to push you that way and no one here will either
these are just suggestions.
Hope you can get a low pain day soon.
(((((((((((((((((((((((((((((((((((((((Dinah Fay))))))))))))))))))))))))))))))))))))))))
Lots of healing Hugz and keep us posted as to how your doing...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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