looneymom
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Posts posted by looneymom
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Hi Sarah,
Glad the Botox is helping. I wish Tyler could do it but since Botox is a live virus. It's a no, no for him.
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Here are a couple more research articles on Nemanda.
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I may have found the cause of my son's headache. The connection I am finding has to do with CamKinese, Glutamate, and NMDAR receptors. Through research, I have learned that High CamKinese levels can do so much damage. It helps regulate the NMDAR receptors and these help regulate the glutamate in the brain. Through testing, I already know that Tyler has high levels of both of these things. Tyler's doctor did check him for NMDAR NR1 antibody subsets but it came back negative. However, plasma exchange will effect the test results so he may be positive. If you have a daily headache, you might want to see if your doctor will check the glutamate in the neurotransmitters test. Tyler was very high and so was his Norephrinphrine. Excessisve glutamate can cause pain. So i started researching and came up with some interesting articles that coud explain why Tyler's has the high glutamate levels.
However, Tyler's headache levels have dropped down some due to a medication called Nemanda. Our doctor has called in the higher dosage due to a study I found. Allodiynia is a form of CRPS. Tyler acutally mets the criteria for this diagnosis. So I wanted to share the study and some of the other articles that influence glutamate levels in the brain. Tyler has been checked for celiac antibodies and this test was negative. He was on a dairy free and gluten free diet for 6 weeks and this did not make a difference. I am also using NAC and Magneium to help supress Tylers glutamate and NMDAR receptors. Here are the articles. Maybe these will help someone else.
http://www.rsds.org/pdfsall/Sinis_Birbaumer_Gustin.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318689/
http://pharmrev.aspetjournals.org/content/63/1/35.full
http://toxsci.oxfordjournals.org/content/68/1/9.full
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Thought this article might be worth sharing. Many things help regulate our nervous system.
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Good for you! Hope you are able to get a Red Blood Cell Count Magnesium Test. Your body cannot absorb D without magnesium. Epsom foot soaks or baths are a great way to get magnesium in your body.
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I do lots of research. When I find something that I think might be useful, I dig even harder to find research that supports my cause. Our cardiologist likes to see research from well know medical researchers and hospitals. Vanderbilt research ranks high with Tyler's cardiologist and so does Dr. Grubbs research.
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Be careful of any of the over the counter medications. Some will raise blood pressures and some lower. A humidifer is wonderful if you need something to help with a head cold.
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I add 2 cups of epsom salt, 1 cup of baking soda and 1/2 tablespoon of Himalayan to a large container of warm water. Tyler soaks his feet for 30 minutes. This mixture can also be added to bath water for a relaxing soak.
This last week on treatment days, Tyler was able to sleep through the night. He is also taking 800 mg of magnesium with B6 (p5p) in divided dosages throughout the day. B6 helps with magnesium absorption.
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Tyler is now sleeping through most nights. His shaking, tossing,and turning has stopped totally at night. If he does wake up, he is able to fall back to sleep very quickly. His headache pain level has also dropped down. His headache/ scalp pain is not gone yet but I'm hoping we are headed in the right direction. Tyler does the foot soaks every night instead of just 3 nights a week. After he started doing this, he started sleeping through nights on days that he does not have PEX treatment.
The PEX treatment does affect mineral and iron levels in the body. However, since he started doing the foot soaks every night, he only wakes up once during the night on the days that he has PEX treatment. The best part is that he is able to fall back to sleep very quickly. He says when he wakes up, he still feels very sleepy and is able to turn over and fall back to sleep.
I have learned a great deal about magnesium from a certain blog. I do not use any of the supplements on this blog because they are expensive. However, there is so much information on how a magnesium defiency can affect the body that I thought it might help someone else on the forum.
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Just from seeing my son go through everything in the past 4 years, I can honestly say that high stress levels( from anything) and infections/viruses affects POTS. So if you are better off that's really good to hear. Do your best to stay well and not stress your body out. If you do not have anything underlying condition causing your POTS then you have a better chance of recovery.
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I did more research on this amino acid because this makes Tyler sleepy during the day if he takes it. However, I could not figure out why it would not help at night. I finally upped his dosage until he fell asleep but would still wake up and toss and turn. For the last 5 days, however,Tyler has slept through the night after I made more changes. I added a slow release iron tablet mid-morning with B vitamins and Magnesium. I mix up 12 ounces of orange G2 gatoraide and add 1/8 tsp of Himalayan Pink Salt. He drinks this twice a day and drinks water (64 OUNCES OR MORE) off and on during the day. On S- M-W-F he does a foot soak in 2 cups of Epson Salt, 1 cup of baking soda, and 1 tsp of Himalayan Pink Salt. Here is an article that discusses why GABA may not work for you.
http://www.balancingbrainchemistry.co.uk/33/GABA-Deficient-Anxiety.html
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Talk to your doctor first. Our doctor let us try a few with Tyler but not what you have mentioned.It made symptoms worse for him and lowered his blood pressure.
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I was able to find some at a local health food store and decided to try it with Tyler. Just wondering if anyone else has used it and if you have seen any improvement with POTS symptoms. Here are a few articles that I have come across that discuss benefits and how it can be used.
http://empoweredsustenance.com/himalayan-salt-benefits/
http://draxe.com/10-benefits-celtic-sea-salt-himalayan-salt/
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Tyler's cardiologist manages all of his medications. It's best if you can find one doctor to manage it all.
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When all this started in the beginning Tyler had an iron and vitamin D deficiency according to MAYO. Tyler started taking supplements then but when he had the virues and infections it seemed to set him back even further.This seems to be a cycle with him because at the time Tyler was able to walk and stand for those 3 short months, the doctor had these levels checked and they were in a veryhigh range. He was also taking 1000mg of magnesium. The doctor did the blood serum test and levels were high, so he told us to cut the magneisum in half. Just wish I had know about the Red Blood Cell Count magnesium test.
I as wish I had thought about having the doctor check these levels after Tyler had the flu last year. Our doctor suspects now that Tyler was building up the stores for iron and D but when he got the double round of flu, his body used it all up again. We are dealing with a faulty immune system and possible mineral deficiencies that are making his POTS condition worse. Running this new test should help answer these questions. Tyler's last D count was 16 in November. Will be sure to post when I get the test results.
BTW anyone can get a Red Blood Cell Count magnesium test done without a doctor's order. Here is the information in case anyone is interested. From looking at this test site, it looks as if you can order other testing without a doctor's order.
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Tyler is having some more testing. If you have a vitamin D deficincy, you may have a magnesium deficiency. Tyler's sleep issues have gotten much worse. He tosses and turns constantly at night. His muscles jerk and twitch. He might fall asleep only to wake up hour later. So I began doing some research on vitamin D and came up with some interesting articles. I shared them with our doctor and he ordered the Red Blood Cell Essential Minerals test this last week for Tyler. Tyler is also getting ready to go down to 2 treatments of PEX this coming week. BTW long term pex can also cause mineral defiencies and restless leg syndrome. Our doctor was not aware of this and this is the reason why he chose to run this test. Tyler was having sleep issues before he ever started the PEX treament. The PEX may have just zapped more of his minerals. Tyler can be retested for the bad antibodies after the PEX has been stopped for 6 months. He will start doing 2 a week treatments this next week for 8 weeks and then go down to one treatment a week for 8 weeks, Eventually he will continue to wean off and then we can retest after 3-6 months off pex. So he has a long treatment plan to continue but this is the safest way to get these bad antibodies out of his body. If he does have minerial deficiencies then these will have to be corrected with supplements. His POTS is a complicated case but I am so thankful to have a doctor that will think out of the box and will look at research articles. The last 2 are abstracts but if you have a condition that is going to require one term pex treatment, you might want to bring this to your doctors attention. PEX is not used to treat a POTS condition but in Tyler's case it's being used because the autoimmune antibodies cause heart damage and heart failure. Our cardiologist is also having to be my son's immunologist and neurologist. Hope everyone is staying warm and maybe this information will help someone else.
http://www.functionalmedicineuniversity.com/public/882.cfm
http://news.vanderbilt.edu/2013/10/magnesium-impacts-vitamin-d-status/
http://www.biomedcentral.com/content/pdf/1741-7015-11-187.pdf
http://www.biomedcentral.com/content/pdf/1741-7015-11-229.pdf
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Yes this is a low blood pressure. Tyer's has dropped down to 74/56 and he is really dizzy. I give Tyler more fluids (g2) and a salty snack when it hits. He also has the sleepless nights and will toss and turn. If you can check your heart rate during those times it might be helpful information for your doctor.
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Here is an interesting article about NMDAR and pain. I thought some of you might want to read this.
http://rileyanesthesia.org/ftp_folders/staff_folders/green/articles/NMDA.pdf
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Have you tried Transderm Scop and Promethazine together. My son had to use this combination when he started PEX but now he only uses the Promethazine. The Zofran had no effect on him either.
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Tyler has 2 more weeks of 3 a week treatments and then he will go down to 2 treatments a week for 12 weeks.The goal is to get down to one treatment a month and eventully stop. Our doctor said this was going to be a long haul but it's much easier than fighting cancer I think. Some of the supplements that we have tried in the past that did not help with symptoms, may have an affect on Tyler now. The Cam Kinese II can affect so many things in the body when it gets to a high level and when other things are high such a glutamate and norepinephrine levels it causes more problems with neuropathy.Tyler has high levels in both of these and our doctor is trying to figure out why. The norephineprine could mean that he is hyperpots but the high Glutamate has him a little stumped. I am thinking this may be causing Tyler's daily headache and scalp pain. Tyler is not celiac or gluten sensitive and we do not eat out. Tyler tried a gluten free diet for 6 weeks and we did not see any changes at all. He has had food allergy testing done and it is negative. We are waiting on the NMDAR receptor test. This test is a little hard to explain but it has something to do with how glutamate is regulated in the body. This NMDAR receptor has also been found in patients that have Lupus and a movement disorder. So it will be interesting to get the results of this testing back. It will be awhile before Tyler's Cam Kinese levels can be measured again. This cannot be done until he is totally off PEX for 3-6 months. Hope everyone is staying warm and having a good day.
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Another abstract on NMDAR antibodies.
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Thanks katybug. Our doctor is really trying and thinking out of the box with Tyler's condition. We hope the NMDAR antibodies are not present but they can occur and cause a movement disorder without encephalities. These things have been known to show up after flu viruses or bacterial infections. I suspected this after I found a few articles online. Here is an abstract I sent to our doctor. After reading the whole article, he decided that testing was necessary.
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Check into neuropathy. This is a hard one to deal with because this is part of Tyler's condition. Check out the articles under the Trying Nemanda post. I would see if you could get checked for some neuroal autoimmune antibodies. A neurologist that knows about the Cunningham panel might be able to help you. These are also being found in adults. Get your glutamate and norepinephrine levels checked if possible. These can be connected to neuropathy problems. Tyler is also being checked for NMDAR antibodies. These antibodies have been found in patients that have a movement disorder without encephalities. Here is the abstract about the NMDAR antibodies. I can't get to the whole article but it might be something to show to your doctor. NMDAR has POTS symptoms and this was why our doctor decided that we needed to get Tyler checked for it. If your glutamate levels are too high it will miss up your nerve signaling. Tyler has had testing that showed very high glutamate and norepinephrine levels.
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Fall was a short season this year in Oklahoma. It's 27 degrees this morning and snowing. But it's beautiful sight to watch from our picture window.
Daily Persistant Headache And Allodynia
in Dysautonomia Discussion
Posted
This article also discusses Nemanda and some other stronger medications used for allodynia. I thought I had all these articles together in the same place.
http://paindr.com/wp-content/uploads/2012/06/Opioid-Nerve-Pain_Fudin-ZORN.pdf