Suthrngal Posted July 8, 2013 Report Share Posted July 8, 2013 Wondering how many have been diagnosed at Mayo or else where with this Central Sentization. The doctor that I saw at Mayo MN last week heard my symptoms and immediately said you have central sensitization he said that it is a mixture of multiple chemical sensitivities, fibromyalgia, POTS, myofascial syndrome, ibs etc. He said is it it is an over activity of the nerves and it can be treated with medications like Lyrica, amitriptyline, neurotin and something else. I want to make sure that this is not a garbage can diagnosis.....ie we don't know what it is so we'll call it Central Sensitization. Has anybody else been diagnosed with this? Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 8, 2013 Report Share Posted July 8, 2013 My son has not been diagnosed with this but has problems in this area. He was diagnosed by MAYO in December 2011 with POTS. All of the medications you have listed, he has tried and nothing helped. Neurotin made his condition worse. Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted July 8, 2013 Author Report Share Posted July 8, 2013 Neurotin was prescribed to him for which symptom? So sorry for his struggles. Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 8, 2013 Report Share Posted July 8, 2013 Interesting, I was prescribed neurotin but it did nothing. Thank god it did not make me worse. Sorry it did this to your son, Looneymumblue Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 8, 2013 Report Share Posted July 8, 2013 Neurotin was prescribed for hypersensitivity and headache. As the dosage was raised, my son just kept getting weaker and was unable to continue to exercise on stationary bike. His story is posted on survivingpots.com. if you would like to read it. At this time, he stills suffers with a headache, has severe scalp pain, and is very sensitive to touch. He has been taken off florinif. Florinif can also cause some of these symptoms. It takes a few weeks to get this out of his body. However, the doctor has asked if I would be willing to try Lyrica again with him. The doctor wonders if the florinif was interfering with the Lyrica. Still thinking about the Lyrica. There were no bad side effects, it just didn't seem to help with any pain. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted July 8, 2013 Report Share Posted July 8, 2013 The following articles on central sensitization may be of interest:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2750819/ Central Sensitization: A Generator of Pain Hypersensitivity by Central Neural Plasticityhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC1820749/Central sensitization: a biopsychosocial explanation for chronic widespread pain in patients with fibromyalgia and chronic fatigue syndromehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3268359/Central sensitization: Implications for the diagnosis and treatment of painBest,Alex Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 9, 2013 Report Share Posted July 9, 2013 Thanks Alex, I've saved the links to read on a 'better day.' I just read a bit of the first link you posted and it sounds relevant to me so far. Deb Quote Link to comment Share on other sites More sharing options...
blueskies Posted July 9, 2013 Report Share Posted July 9, 2013 Hi Looneymum, I know we all respond to meds differently but Lyrica caused no side effects for me but constipation. Colonic inertia is a problem for me so I could not continue on it. Lyrica, which was given to me for migraine, just as the neurontin was didn't seem to make any difference to me but I might not have been on it long enough to see a difference. I tried neurontin twice. First for migraine and then a year and half ago my neurologist gave it to me for my hot buring skin problem. It did nothing for that either. I'd love to know if it worked for anyone? blue Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 9, 2013 Report Share Posted July 9, 2013 My son was on Lyrica for 7 months but didn't have any effect on him. I've thought about trying this again with him but I'm waiting to see if coming off the florinif will bring relief to some symptoms. Right now, I really wonder if the florinif did interfere with any of these medications.He also tried Cymbalta. It made his heart race within about 48 hours.He was on the Neurontin for 6 months before a pain specialist at MAYO decided to up his dosage to see if it would help headache and hypersensitivity. Before I could get him weaned off, my son went totally down. He could not sit up without support. He will not be put on this medication again.I don't want to discourage anyone from trying these medications because for some people they work great. If coming off florinif does not improve his symptoms, my son may try the Lyrica again. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 9, 2013 Report Share Posted July 9, 2013 Axex, thanks for posting the articles. Really good information. Quote Link to comment Share on other sites More sharing options...
diabeticgonewild Posted July 10, 2013 Report Share Posted July 10, 2013 My son was on Lyrica for 7 months but didn't have any effect on him. I've thought about trying this again with him but I'm waiting to see if coming off the florinif will bring relief to some symptoms. Right now, I really wonder if the florinif did interfere with any of these medications.He also tried Cymbalta. It made his heart race within about 48 hours.He was on the Neurontin for 6 months before a pain specialist at MAYO decided to up his dosage to see if it would help headache and hypersensitivity. Before I could get him weaned off, my son went totally down. He could not sit up without support. He will not be put on this medication again.I don't want to discourage anyone from trying these medications because for some people they work great. If coming off florinif does not improve his symptoms, my son may try the Lyrica again.Looneymom,From an AAG standpoint, up to 20% have central nervous system (usually neuropsychiatric issues such as executive dysfunction, personality change, depression, psychosis and amnestic mild cognitive impairment) involvement (some sort of other disease not due to AAG) and up to 25% have somatic neuropathy. This was from a cohort of 155 patients identified from the Mayo Clinic.While he may have "hypersensitivity" and headaches (likely tension headaches - but might be migranes), this may be a much more complex situation, regardless of the cause. While I am no medical doctor, I am skeptical of all of the reports of central sensitization, as this is only a syndrome.Also, although I have only heard good things about the Mayo Pain Rehabilitation program, I am skeptical of the program. I believe the program is successful through proper referral of those individuals who have a high chance of recovery through stringent rehabilitation. I do not merely have POTS or orthostatic intolerance. I have a disease that adversely affects my entire autonomic nervous system. Quote Link to comment Share on other sites More sharing options...
looneymom Posted July 10, 2013 Report Share Posted July 10, 2013 MAYO would like to have had my son in their program. Just one catch, he had to be able to walk on his own. Since he was diagnosed by them in December of 2011, he has only had one three month period that he could walk by himself (Oct-Dec 2012). He went down again after the flu in January 2013. I'm beginning to think my son my have a disease which adversely affects his autonomic nervous system. Still waiting on AAG test results. Too bad MAYO did not run the AAG test on him when he was seen by them. It was being done in studies at this time. My son was just not old enough for the study. Like you, I have also heard good things about the program. My family and I actually sat through an appointment for the program orientation. They would not take my son because he could not walk. However, not all their school age patients have success with this program. My husband and I have read bits and pieces on other forums, that only about 1/4 are able to go back to school. Quote Link to comment Share on other sites More sharing options...
Beverlyz Posted July 11, 2013 Report Share Posted July 11, 2013 Looneymum- I am also a mom to a son with dysautonomia. My 14 year old has been sick for 2 years since attending a camp run by an occupational therapist - she apparently caused a major disruption in his vestibular system, which triggered autonomic instability. My son and I attending the DYNA kids weekend a few weeks ago and made useful connections with other parents and kids. They DYNA forums have been great - It's been good for my so to see that he is not alone. I am so sorry your son is so ill. My son is going to see Julian Stewart tomorrow, and will get the full round of tests so we are hoping for more information and direction. There are so many treatments out there and so few will help, and the wrong ones can hurt alot! All the best to you. Quote Link to comment Share on other sites More sharing options...
SnowDrifter Posted July 11, 2013 Report Share Posted July 11, 2013 I have CSS.My doctor described it as this: Your brain has 2 modes. Normal, functioning, every day mode. And fight-or-flight mode. Fight or flight mode heightens your senses and lets all signals in from the feeling of your clothes on your skin to the whirr of the fridge in the background, etc. Works great if you are fighting for your life, but having that much info streaming in at once AND it being amplified.... It's very fatiguing. Quote Link to comment Share on other sites More sharing options...
songcanary Posted July 11, 2013 Report Share Posted July 11, 2013 I was diagnosed with this in 2010 at Cleveland Clinic. It's terrible. But it does explain why I jump to the moon if I'm so much as tapped on the back LOL. Quote Link to comment Share on other sites More sharing options...
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