Started Ldn

[looneymom]

My son started this medication a week ago for chronic pain. He has noticed some small changes. This medication is used to treat several conditions related to autoimmune illnesses. The first article is by a pain management doctor that treats POTS patients in RI. He has also written other others besides this one. I have found several articles and websites on LDN. I will post what information I have and maybe this will help someone else. This medication works gradually and so far my son has not had any side effects. What we have noticed so far is that blood pressures are better and not having to give as much salt. After a shower his headache pain levels do not go up to the 9/10 levels. They stay down at the 6 level. Major improvement in this area. I have seen him smiling and laughing so much more the last several days.The reason for trying this medication is to see if we can get rid of his severe scalp pain. He has many symptoms of Chronic Regional Pain Syndrome and many POT patients have this also. Here are a few articles to start with and I will gradually add more. Don't want to over load you a bunch of information.

http://www.lowdosenaltrexone.org/

http://www.ldnresearchtrust.org/sites/default/files/LDN_Mechanism_Of_Action_Pradeep_Chopra_MD.pdf

[looneymom]

Here are some other research article pertain to LDN

.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3661907/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

[looneymom]

This is Tyler's 3rd week on LDN. He is making progress with this medication. Some of his hypersensitive skin problems are much less. He can be touched on his arms and legs without pain. When he washed his hair last week, his vocal tics did not start but the scalp pain is still on going. His energy levels and stamina have improved. Some exercises that he was having to do on the floor because tremors would start, he can now do sitting upright without tremors. I have been trying to wean Tyler down on his Zoloft and he would always stay sick to his stomach and not be able to eat for several days. This did not happen the last time I lowered his Zoloft. I have also been able to lower his extended release clonidine medication and he is still staying asleep and sleeping through the night. He can also do legs slides on the floor with a 1lb pound weight now. See lots of of small but positive changes.Since school has started this week, Tyler is riding a stationary bike 10 minutes and sitting on a bench without a back 15 minutes 3 days a week (M-W-F). On Tuesday and Thursdays, he is doing exercises to build core and leg muscles. I am his physical therpist because he cannot be out in public places until we get through this next Flu season. Tyler is happy, smiling, and laughing more. His last Plasma Exchange Treatment was July 27th and if he continues to progress like he is doing now, his port will be removed the last of September.

If you are interested in learning more about LDN, there is a book called The Promise of Low Dose Naltrexone Therapy. I found the book online and was able to read it.

If you are dealing with CRPS, LDN might be helpful. However, LDN helps with much more than CRPS. Recently, I found another good powerpoint presention about CRPS and other treatments that are helpful. CRPS could be underlying cause of POTS. Another supplement, that Tyler may be trying in the future is PeaPure. It is also mentioned in this powerpoint presentation.

http://www.rsds.org/OLD/web/content/pdfsall/CRPS.update.on.treatment.2014.Lafayette.pdf

[looneymom]

BTW I also forgot to tell you that Tyler's blood pressures are staying up in a better range and not falling out like they use to. They stay between. 110/75 to 118/70 throughout the day. He is still taking the same amount of mididrine 30mg 3times a day and takes in 3-4 grams of salt per day. His blood pressures are more stable and I give him the salt now to keep them from falling below the 110/75. Since he is able to exercise, our doctor is keeping a close eye on blood pressures. He is still not able to bear weight on legs and leg marches in chair cause tremors.

. If the LDN cannot get the headache pain levels down in a few more months, then we are going to consider adding the PeaPure. LDN and PeaPure can be used together. Pain management doctors use this combination together. I have been trying to find an article about PeaPure without a link to order it. However, I have not found that good link yet.

BTW LDN is not used to raise blood pressures. It modulates the immune system. If your POTS could be caused by an immune related conditon, then LDN could possibly help stablize the blood pressures.

[corina]

Thanks for letting us know Rachel and great to hear Tyler is doing better!

[Katybug]

Great information! And, even better news about Tyler ' s progress! It's o good to hear! He has been such a trooper through all this!

[Nymph]

My doctor just prescribed this on a trial basis for me. I am trying Adderal first. Thanks for the information! I hope that it continues to help Tyler.

[sideofsalt]

That's encouraging news and I'm so happy to hear he is doing better! LDN has appeared on the periphery of some of my research for hypothyroidism. It is interesting to hear about it in a dysautonomia context.