looneymom
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Everything posted by looneymom
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Here is an article on leg exercises that might be helpful to someone thats been bedbound or just wanting to maintain leg muscles. Tyler is able to do all of these except marches in a chair. He is still riding his stationary bike and sitting on the bench. He could not any of this a year ago. The LDN has been a good medication for him. Tyler has not seen any major changes in pain yet but seeing improvements in other areas, However, LDN takes awhile to fully regulate the immune system and we feel like it's worth the wait to see what will happen in the next 6 months. Tyler is getting his Port out next week. His doctor does think that the Basal Gangla Antibodies are gone since his tremors have started to ease up, he's able to exercise, and his blood pressures are staying up much better. Tyler symptoms did not increase when he had the flu last March. This was another clue that let his doctor know that the Plasma exchange was doing it's job. He seems to think that improvement is going to come gradually and not to stress the body out during this recovery period. Our goal is to keep Tyler well this next year to give his immune system to rebuild itself back up. If he gets sick, I must have the doctor order a test for strep throat with a culture and if a cough is involved, Mycoplasma Pneumomia has to be checked. Research indicates that once these antibodies are out and the patient is able stay well long enough to rebuild up the immune system, that the body should be able to fight off infections and not allow the antibodies to build up in the body again. Just though you guys might enjoy an update. Progress is slow and steady but this mama bear is hoping the worst is behind us. Here is the article on leg exercises. Remember to start slow with exercises. Tyler started with a set of 5. He is up to doing 2 sets of 10 with these exercises. He uses a basketball to squeeze between the knee exercise. He started out with a nerf ball but decided he needed something with more resistance. Happy exercising. http://www.livestrong.com/article/537011-leg-strengthing-exercises-after-being-bedridden/
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Gabepentin/neurotin And Neurological Side Effects?
looneymom replied to p8d's topic in Dysautonomia Discussion
Sorry you are having troubles with this medication. My son was put on the medication due to pain issues. However, through research I learned that this medication raises dopamine leves. This medication caused neurological problems for him. Two years ago, I found out that my son had high dopamine receptor levels. This medication was given to him a year before I found out he had this problem. My son has never been put back on this medication. It does mess with neurotransmitter levels. Some people handle this medication just fine and do not have any side effects from it. -
Crps Could Be Caused By A Headache
looneymom replied to looneymom's topic in Dysautonomia Discussion
One more new article to add. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596443/ -
Insomnia Medication & Hypo Symptoms Management Advise Please
looneymom replied to Mikey69's topic in Dysautonomia Discussion
I don't know if this would help with sleep but my son takes extended release clonidine at night. It is used for patients that have the hyperpots condition. It helps my son fall asleep and stay asleep through the night. This medication was prescribed by a neurologist. Hope you are sleeping better since you have started eating smaller meals. BTW this medication also lowers blood pressures. -
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.
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Update On Daughter's Neurology Visit For Chronic Vertigo
looneymom replied to DizzyGirls's topic in Dysautonomia Discussion
Wow! You had a really good appointment and sounds like you found a doctor that cares. So happy for you guys and hope the new medication helps. -
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
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Crps Could Be Caused By A Headache
looneymom replied to looneymom's topic in Dysautonomia Discussion
Here is another article about Systemtic Complications of CRPS. This is a good article to email or take to your doctor. The PDF is free to download. http://www.scirp.org/journal/PaperInformation.aspx?paperID=22695 -
Welcome to the forum. It's tough when you feel like you are not getting any better. I watched my son keep going down hill after he got his diagnosis. I would suggest you keep a diary and watch for a patterns. Many things can make POTS worse. Just don't give up. Lots of information on the forum about things that can make POTS worse. Start with the basic things like salt, fluid intake, and exercise.
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Finally a research article that validates another symptom. Tyler has all the symptoms and CRPS is a clinical diagnosis. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3979276/ Here is another article that discusses other treatment options and symptoms of CRPS. Adults seem to have more options than children but LDN is mentioned in the article. http://utahvalleypainrelief.com/wp-content/uploads/2013/12/CRPS-review-article-1.pdf
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Insomnia Medication & Hypo Symptoms Management Advise Please
looneymom replied to Mikey69's topic in Dysautonomia Discussion
Hi Mike Have you tried any protein shakes? GNC store sells different kinds and they are gluten free. They can be mixed with water or milk. They would be filling and you would have a way of counting calories. My son likes the GNC Pro Performance Amplified Wheybolic Extreme 60 Chocolate but it comes in different flavors. 60 grams of protein per serving and 2 grams of sugar per serving. For more information on this product go online. GNC has all of their products online. -
When my son had this so bad his doctor put him on Zoloft and L-Methylfolate. Low B vitamins can cause brain fog problems expecially if your body has a hard time absorbing them. You might need to get these checked by a doctor and see if he could help interpete the 23 and Me testing. This test lets you know what type of B vitamins your body needs. Right now my son is starting to wean off of the Zoloft. He is not have any trouble with brain fog but I am going to continue to keep him on the supplement. . Another medication he is on is Namenda. Namenda does help with brain fog and memory problems. This is a medication used for Alzhemimer's disease and is a prescription. However, my son is using this medication to help with headache and scalp pain. It has helped some in this area but I suspect it may also be helping with brain fog and memory. This medication is not a SSRI but regulates the NMDAR receptors which in return regulates glutamate in the brain. My son has high levels of glutamate and high levels of glutamate can be toxic to the body. He did try a gluten and dairy free diet for awhile but it had no effect on this condition because the condition is cause by overactive NMDAR receptors in the brain. This brain fog is horrible to deal with and I feel sorry for anyone that has to deal with it. A neurologist should be able to help you but a good functional medical doctor would be able to assist you with some more natural supplements. Wishing you the best with this situation.
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My son has sleep issues and night time sweating problems. The only thing that has helped him fall asleep and stay asleep through the night is extended release clonidine. He takes .3 mg at night. I have tried weaning him down to a lower dosage but his problems of sleep and sweating issues start up again. A neurologist prescribed this medication for him. If you are low in Magnesium, this can cause some sleep issues. If you can take a bath, you might trying soaking in epsom salt before going to bed.
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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/
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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
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So far Tyler has not had any problems on the goat milk. If you google Happy Days Goat Dairy articles, you will find several article written by a dietician on the nutrient value of goat milk.
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Dragon I would say something to your doctor. If you research, you will find other incidents related to this vaccine. I will not give it to either one of my sons.
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If you are dealing with tremors, these articles might be of some help. Tyler is holding his own so far but he still tremors off and on throughout the day. He is not able to do leg marches while sitting in a chair but I am hoping this will eventually come. When you have had antibodies in the body that have messed up the brain transmitters it takes time to retrain the brain for correct movements. Tyler's body has become deconditioned because of these antibodies not because of POTS. So anyone that tells you POTS is caused by decondition is wrong. Tyler had the Cunningham Test that revealed high Basal Gangla Antibody levels. He was never been diagnosied with PANS/PANDAS because he did not fit the NIH criteria. However, these antibodies can cause permanent movement disorders if they have caused damage to the basal gangla . These antibodies have also been found in adults. However, what has caught my attention is specific antibodies cause specific problems. Tyler had the Cunningham test that checks for 5 different antibodies. Tyler's Dopamine 1 and Cam Kinese II levels were high but his other 3 antbodies were in the normal range. However, his Dopamine 2 was the last number on the normal range level. I found a few research articles on how these specific antibodies (Dopamine 1 and 2) can cause movement disorders. So I am concerned if these antibodies have caused a movement disorder and if it will go away. Here are the links to those articles. Time will only tell if Tyler has permanent movement disorder. Tyler has one more plasma exchange treatment next week and then he will go off them for a month to see what happens. http://www.neuroanatomy.wisc.edu/coursebook/motor2.pdf http://www.apiindia.org/pdf/pg_med_2004/chapter_30.pdf http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2929378/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705177/
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Since we have so many new members, I thought this website might be helpful. http://standinguptopots.org/treatment/exercise
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I have the free range chickens and our family has been enjoying the fresh eggs. I started Tyler on the goat milk at a low dosage. So far he has not had any problems and I wil gradually raise the dosage up week by week. My husband, oldest son and I have been drinking the the milk for almost 2 weeks and have not had any problems. I am beginning to cook with it and thinking about making some soap.
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BTW if you want to look at this program you will need to google Rehabilitation Exercises The Cancer Supportive Care.
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I have been looking for some more exercises for Tyler to do and came across this website for cancer patients. There are 3 different stages of exercises.Tyler is already doing some exercises in the first stage and he is riding is a stationary bike. He is riding 5 days a week and doing the exercises M-W-F afternoon. Tyler has skipped his first plasma exchange treatment and is maintaining. Hope everyone is having a good day.
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You might want to read Dr. Carol Deans blog on Magnesium. Magneisum and vitamin C can help with these symptoms. My son has adrenaline rushes. Right now he is having more than normal because I have been lowering his Zoloft dosage every 3 weeks. When neurotransmitters get out of balance, this also seems to make this problem worse for my son. If you can find a neurologist that has an interest in this condition and is willing to run test, you might be able to get the condition under control.
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I agree with you Katybug about the compromised immune system. My husband and I were shown the milk room and the barns. You need to know where and how your milk is being handled. If I see some good results with this choice, I am thinking about buying some milk goats.
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Does anyone drink raw goat or cow milk? If so, are there any symptoms that it seems to help you with. I was wondering if it helped with pain and inflammation. I found a farm near my home and bought a gallon of raw goat milk. I have not given any to Tyler yet but my older son and I have been drinking it. From looking at the research, there seems to be many benefits of drinking raw milk. I am thinking about using it as a supplement with Tyler to see if it would help boost his immune system and help with pain issues. Just wondering if anyone had tried raw milk and had any positive benefits from it.