looneymom Posted January 12, 2015 Report Share Posted January 12, 2015 I found another article on chronic pain that might be helpful to someone. It is research about how CamKinese can cause this form of pain. Camkinese is needed by the body but if it gets too high it affects other receptors. I sent this research to Tyler's cardiologist and he called the other day. The testing for the NR2 subunits for NMDA receptors is still in research and has not been released yet. Just our luck. I find the research that makes the connection with Tyler's headache/scalp pain and testing is not available. This article also mentions the connection of NMDA receptors to CamKinese levels. The testing to check for CamKinese levels is available. This article does mention the use of another medication that can be used to treat this condition. I was finally able to get a prescription for the extended release Namenda. Namenda helps reduce the activity of NMDA receptors and dopamine receptors. Tyler has trouble with those receptors also.http://www.uic.edu/labs/wanglab/PDF/tfp2.pdf Quote Link to comment Share on other sites More sharing options...
issie Posted January 12, 2015 Report Share Posted January 12, 2015 Interesting! Hope it helps him. Issie Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 20, 2015 Report Share Posted January 20, 2015 Rachel, Have they ever considered Levadopa as well for Tyler? Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 22, 2015 Author Report Share Posted January 22, 2015 Tyler has high dopamine receptors 1 and 2. I have asked about this but the doctor said it could make cardiology problems worse. Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 23, 2015 Report Share Posted January 23, 2015 I need to figure something out. I am miserable. My OI is better than earlier on, but my pain is off the charts now. I am apparently allergic to everything, so I am not sure where to go next. Quote Link to comment Share on other sites More sharing options...
issie Posted January 23, 2015 Report Share Posted January 23, 2015 I need to figure something out. I am miserable. My OI is better than earlier on, but my pain is off the charts now. I am apparently allergic to everything, so I am not sure where to go next.Look into MCAS (mast cell activation syndrome). It may appear that you react to everything. But if you were to have allergy testing you may not show allergic to anything. That doesn't mean that your histamine receptors aren't in overdrive. Addressing MCAS was one of the best things I did. GastroCrom was a HUGE help for me. I tried to go off recently and had to go back on. I think it helps the immune system too. I have to do an H1 (Allegra) and H2 (Zantac) nightly. I use GastroCrom 2 times a day instead of recommended 4 times a day. Issie Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 23, 2015 Author Report Share Posted January 23, 2015 Histamines can be a big problem for some people. I am asking Tyler's doctor to run the blood serum histamine test. I read a post on another forum about a motor tic situation. The parent said her child had no infections but was still having moter tics. She knew through testing that histamine levels were high and decided to give the child DAO. This inhibits histamines in foods. A month later the child was hardly having any motor tics. The parent said it was about 95% improvement. Histamine causes inflammation in the body but I never thought about it in this way. I found a touretts study that was looking into a connection with H3 receptor. Like Issie said this can be part of MCAS but most doctor don't know how to test for it. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 23, 2015 Report Share Posted January 23, 2015 Rachel,Just a suggestion, but my hematologist, Dr. Samaras at the Cleveland Clinic had suggested that obtaining a 24 urine histamine collection would prove to useful also when getting blood samples. This would be interesting to see what his levels are at various times of the day, too. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted January 23, 2015 Report Share Posted January 23, 2015 Gjenson,Sorry to hear you are in so much pain. I know Issie mentioned Gastrocrom has been a big help, I know of a few others who have had life changing results with that medicine who have MCAD. Have you been diagnosed with that though? I also have a friend who wasn't able to afford gastrocrom, because it is very expensive I think, so she takes Gabapentin, (Neurontin).I really hope you find some peace soon. Sarah Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 23, 2015 Report Share Posted January 23, 2015 Thank you guys. Rachel, sorry to have side tracked the thread.Issie, I am looking into it. I do not have the diagnoses. I have not found a doctor for it. I am eager to see a doctor for this.My cardiologist says that I have pericarditis (I am not convinced). Can't take the meds. I made the mistake of taking an aspirin tonight. Big, big mistake. I am still paying for it. I even react to Claritin, and Benadryl of all things. Two vitamins etc. Lately, it has been everything I have tried. Everything.Sarah, I have Neurontin now in a liquid form so I can start very slow. I wanted to get a grip on this apparent mast cell thing so I had a better shot at being successful, but may not have that option soon. I might chance it anyways. Quote Link to comment Share on other sites More sharing options...
issie Posted January 23, 2015 Report Share Posted January 23, 2015 I can't take either of those antihistamines either. Only the two I listed. And I use only 1/2 of the Zantac.The urine test and blood test are only good if you are in a flare. Otherwise, likely, they will show normal. The only thing that will show is mystocytosis. With MCAS there is no rhyme or reason. You never know what will trigger it. Do a search on the forum. There is a lot of info on this.FYI - Tagament can lower DAO. And aspirin can cause a degranulation of mast cells.I tried neurotin, it helps pain but caused depression with me. I believe it doesn't help mast cell issues. There is a bit of an issue in regards to GastroCrom - there is no other alternative. I think there is no other drug like it as an alternative. And it is UNREAL expensive. I had good insurance and no longer do. Trying to find a way to get the pill form and I will mix it in a liquid myself. Is about half the cost that way.Issie Quote Link to comment Share on other sites More sharing options...
Jon6945 Posted February 3, 2015 Report Share Posted February 3, 2015 Namenda can have some real nasty side effects looneymom. Please be careful with this one. In theory it sounds great to deal with blocking NMDA receptors, excitotoxicty, pain, ect but the reality of this med is it only works on very specific problems and often has a lot of side effects that could make the problem worse. It is not at all what it is cracked up to be in most cases. For Tylers sake I hope it helps but please keep in mind it can really have some serious side effects and make things worse. Just keep an eye out for potential adverse reactions. Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 3, 2015 Author Report Share Posted February 3, 2015 So far so good with the Namenda. Before Tyler got the flu, his headache pain levels were at a 6 1/2 out of a 10. When Tyler had the flu his pain levels were at a 10. Yesterday, he was at an 8 but he wants his headache pain to go down like it was before the flu. He has not had PEX treatment for 11 days but starting eating much better yeasterday. So hopefully he can do treatment on Friday and his headache pain levels will come down some more. I wondering if the combination of PEX and Namenda is helping the headache.and other pain symptoms. Its a wait and see waiting game. Quote Link to comment Share on other sites More sharing options...
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