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Everything posted by looneymom

  1. I fixed the link. So everyone should be able to see it. There are other articles online that explain how Inositol works in the body. It's also know B8 and was not in Tyler B complex vitamin. It acts as messenger in the brain that regulates dopamine, serotinon, and norephrinphrine levels in the body. Had I know about this supplement earlier, I would have rather used it instead of using Zoloft and the ER Clonidine. It has helped with several symptoms that popped up after I took away the Clonidine. It most likely saved us a trip to the hospital. I'm thankful that I was able to recognize the symptoms but had no idea the symptoms would come on so quickly. The research about mental health and neurotransmitters not in balance is correct. I would have never believed it until I saw it happen over night in Tyler. Here is one more article about the anti-basal gangla antibodies. The researchers have found that patients that had these antibodies in childhood and had relaspes later in life. They believe the relaspes are related to dopamine hypersensitivity of chronically damage basal ganglia neurones. If this be true, then staying on the medications that help regulate these neurotransmitters maybe the ony way of avoiding a relaspe. Here is the link to that article. http://jnnp.bmj.com/content/75/10/1478.full.pdf
  2. Tyler started walking with a walker last week and Today he walked in the house without using it. He has made tremendous progress. He is exercising 4 days a week and using arm and ankle weights. However, we have discovered that Tyler cannot come off his Extended Release Clonidine. We tried taking him off of it this last week and his blood pressures were high. So high that he had to skip his Midodrine dosage at night. He also stopped sleeping through the night but the worse part was some extreme OCD symptoms that he had never had before decided to show up. So the clonidine must be keeping norephrinphrne levels and dopamine levels down. We just thought it was helping with sleep but evidently it's doing much more than that. So Tyler may be HyperPots or he may have damaged dopamine receptors from the autoimmune antibodies that were caused by strep and mycoplasma infections. Here is some research about how dopamine receptors can be damaged by other illnesses. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3949352/ To help calm the OCD symptoms down, I have been giving Tyler Inositol about every 4 hours during the day since last Friday. The symptoms are much better and the Inositol does not interfere with his other medications.Here is a study about Inositol and OCD. EDIT Let's try this again and see if this New link will work. http://www.ncbi.nlm.nih.gov/pubmed/9169302
  3. Hi Tara My son does not have AAG but had testing that showed high levels of basal ganglia antibodies. These antibodies are caused by strep infections. My son's POTS condition kept getting worse. To clear the body of any autoimmune antibodies, usually IVIG or Plasma exchange is used. My son tried ivig first but it made his symptoms worse and could not see any improvement. IVIG is used to boost the immune system but Plasma exchange will remove the bad and good antibodies. My son had to have many plasma exchange treatments to get his autoimmune antibodies out. After a year of treatment, he has made much progress. If you have AAG, Plasma exchange or IVIG will help that condition. Another medication you might want to look into is Low Dose Naltrexone. It helps modulate the immune system and helps with chronic pain. This medication is used to treat many other autoimmune diseases. If you have autoimmune antibodies, you will need some type of treatment to get them out, or something to boost your immune system to fight off the invasion. The stronger chemo drugs are used if cancer is involved. IVIG and Plasma Exchange are a much better alternative than chemo drugs. Wish I could be of more help. My son was never tried on Mestion. If autoimmune antibodies are involved with your POTS condition, the quicker your doctor can figure this out, the quicker you can start treatment. My son's POTS condition just kept getting worse but stablized after several months of treatment. Hang in there and keep searching for your underlying cause. It does sound like you have a doctor that's willing to do that.
  4. Here is some of the lastest research on POTS in ME/CFS patients. Researcher stated that strep could cause the receptors found in POTS. The researcher discusses Dr. Kem's and Dr. Cunningham's research on POTS. Pretty sure this is Tyler's cause of POTS. https://youtu.be/a6NqOYdBRrg
  5. Tyler's scalp pain is gone. He can wash his hair in the shower and his vocal tics do not start. He can do high leg marches and finally do leg lifts when laying on his back. I thought I would never see him do this exercise without tremors. I am hunting down new exercises every few weeks because he is able to do ankle weights with the orginal exercises he started doing back in May. He is able to do a set of 20 with many of them. He can do bridges and some exercise can be done sitting upright instead of doing them laying down on the floor. He has graduated to the upright position with some exercises and beginning to add weights to those exercises.Having to monitor exercises with a pulse ox meter for fear of over doing it and sending his into a crash. Strength is coming and exercises are not causing tremors to start. Tyler is having some lower back pain when riding his bike and sitting up on the bench without a back. This pain eases up and is gone about 20 minutes later after exercising. I am having him do some stretching exercises and some exercises that help with lower back pain. However, this pain is the same type of pain he experienced the last time he was doing the bench exercise. My thinking is this pain is related to weak lower back muscles. I say this because Tyler is just now able to do exercises that would strengthen low back muscles. So I kinda think that doing the bench was like putting the Cart before the HORSE maybe? Tyler was limited in what exercises he could do in the beginning because so many exercises would just cause tremors to start. He is not going to stop riding the bike or doing the bench. However, he is not going to go up on time for a few weeks, so he can concentrate on building up some lower back strength with some other exercises. These exercises should also help with pain issues. Tyler is not discouraged by the pain and is excited about his progress. He realizes he is getting stronger but I am really having to watch for signs of over doing the exercise with him. So scared I will go overboard with exerises and send him into a POTS crash. As far as medications, he is still on the Midodrine and thermotabs to help keep blood pressures up. None of those medciations have been lowered. It will be interesting to see if the LDN will help that situation. He has been able to lower his dosage of Zoloft and extended release clonidine.
  6. Hi TCP I was going to suggest some floor exercises but you do have to be careful with POTS and EDS. So I'll throw out some ideas. What about leg marches while sitting in a chair or arm raises. Both will also pump up the circulation and you could add weights as needed. Would isometric exercises be too much? With these exercises, you just squeeze the muscle and then relax the muscle. Just be sure to start slow and don't do any more than 1 set of 3 or 5 with any certain type of exercise. It might be a little bit of trial and error to find exercises that will not over tax your system but it will be worth the effort. Not sure where you should begin with exercise level but I hunted online for exercises that a bedbound or stroke patient could do. My son had to start at this level because of his tremors. He did get sore from the exercise and he could only do exercises one day a week. He can now do exercises twice a week but it took several weeks before that happened. My suggestion is to start slow and easy. You don't want to set yourself up for a major POTS/EDS crash.
  7. It's time for a Happy Post. I wanted to let this news out of the bag last week. Tyler has been on LDN for 9 weeks. This last week, his headache started dropping down again. He dropped from a 6 out of 10 pain level to a 3 and then to 0. I was too afraid to post because when he takes a shower and washes his hair, his headache usually get worse and his vocal tic starts up because of stimulation to his scalp. After shower and hair wash this weekend, his headache is still gone and his vocal tics did not start up while washing his hair. However, he still does have some scalp pain but it is much less. Tyler was started on the LDN because of his hypersensitivie skin issues, headache and severe scalp pain. However, I have noticed some other benefits of this medication. I don't know if I can give LDN all the credit but I feel like it's the main reason for my son's headache to be gone. Tyler has also been kept on another medication called Namenda. He started this medication in November 2014. His headache was at an 8 out of 10 pain level and did not drop down to the 6/10 pain level until June of this year. Namnda helps regulate NMDAR receptors which in return regulate Gluatmate receptors in the brain. My son has had the testing to verify the high glutamate levels. Through research I found an article from a pain management doctor that has used Namenda and LDN together. The patient had chronic pain issues and was able to wean off the Namenda and go to a lower dosage of LDN. Here is the article on LDN and Namenda. http://rsdadvisory.com/rsd-complex-regional-pain-syndrome-a-case-report-03032010-nancy-sajben-md/
  8. My son took this medication a few years ago to help contol a vocal tic. However, it stopped working for him and he was switched to ER Intuniv. He was taking a small dosage but he did not have any trouble getting off of it. It did not seem to help with any POTS symptoms and it did not make POTS symptoms any worse.
  9. Tyler did a modified leg march today. I had to figure this out because he cannot march with his legs while sitting in a chair. However, he can lay down on his back, slide his leg up until knee is bent and then lift his leg off the floor. No tremors. Finally seeing some more brain and nerve signals connecting. Tyler had tremors before he started Zoloft, but I had no idea that a side effect of this medication is tremors. Keep learning something new everyday. Hope everyone is having a good day.
  10. Tyler is doing well since he had his port out. No backsliding. He is maintaining. The day of his port surgery and the day after (last Monday and Tuesday) were his rest days from exercise. The week before he exercised 3 days on, one day off and three days on. We planned this in advace so he would not have to take off anymore than 2 days off of exercise. He was able to continue with his exercise program W-Th-F after his surgery. He took this last weekend off and started back up with his exercise program again this week without any problems. This is so different and so exciting to see him be able to maintain an exercise program. Tyler has also been able to drop down on his dosage of extended release clonidine. He is only taking .1mg. The LDN seems to be helping with sleep issues and I never thought I would ever be weaning him off the Clonidine. However his doctor wants me to hold him at this dosage for a while and start lowering down his zoloft dosage in another week. If Zoloft is causing his tremors, I will be glad to get rid of it also.
  11. You might want to have iron levels checked. This does not sound like depression. It sound like you are trying to live your life to it's fullest. Good for you!! However, maybe you are over doing it a tad and thats why you are feeling more tired. However with low iron, your energy level will not keep up with you. If you are more active on the weekend, don't forget extra fluids and salty snacks.
  12. Has her Vitamin D or iron levels been checked? Low vitamin D/ iron levels can cause severe leg pain and other pain issues. My son has the hypersensitive skin issues that you have described and other chronic pain issues. You may need to check out the symptoms of Chronic Regional Pain Syndrome. My son has all the symptoms but has not been officially diagnosed. However, his cardiologist has put him on a medication called Low Dose Naltrexone and he is no longer feels pain when being touched on his legs or arms. This medication is used to treat CRPS and other autoimmune immune conditions that can cause nerve pain. If you do a search on the forum for LDN, you will find other articles explaining this medication. Hope your daughter gets to feeling better soon.
  13. My son has a daily persistance headache. At one time, it was a 9-10 pain level. He has tried the medication, your daughter has been on and many other medications for migraines. He did not get any relief either and sometimes they made his headache worse. The only medication that has given him some relief is Extended Release Namenda. This medication is not for treatment of headaches. However, there are research studies that is has been used to help treat headaches and chronic regional pain syndrome. My's son's POTS is autoimmune related and neuropsychic medications made his headaches worse. Please be careful with these medications and starting with the lowest dosage is a smart way to figure out if it's going to make something worse. His doctor and I learned by trial and error very quickly. It sounds like you already know that your daugher is sensitive to medications. Start low and go slow with any medications if you find out that your daughter does have POTS. If you can get your daughter in to see Dr. Raj, you will be in good hands. The quicker you can get your daughter to a specialist, the quicker you can rule out POTS. If she does have POTS, this doctor will be able to get her started on a good treatment plan.
  14. My son does exercises on floor or in a chair. He uses a recumbent bike. Ankle weights for leg exercises. You can use the free hand weights for arm raises. A physical therapist could evaluate and give you a home program to help get you started. The key is finding the right amount of exercise to start with and not over do it.
  15. The Tilt Table Test will be looking for the change in the heart rate. My son's base heart rate was 104 and went all the way up to 154 at the end of 10 minutes. He almost passed out. His blood pressure dropped to 79/61 at the 8 minute mark. If she can swim everyday or other day, that's great exercise for her to be able to do. Swimming will work her muscles and she is not having to fight against gravity to keep the muscles in shape. A specialist will do more testing. The worse thing to do is to stop doing exercising. Some exercise is better than none, even if it is done every other day. From reading some research, I learned that a POTS patient should always try to exercise every other day and never take a break from exercise for more than 2 days. If a POTS patient does not start back doing exercise on the 3rd day, their body may start to lose what they have gained. I wish I could remember where I read this from but deconditoning seems to sneak back in quickly because the patient feels so bad. I Just do your best to encourage her to swim every other day. I would encourage the swimming and wait for the testing until you know for sure what is going on. Swimming will work all of her muscles. However, the biking or walking upright will help keep the core and posture muscles strong. An exercise buddy might be helpful and provide the extra encouragment she needs. Stay strong mom and get her to a specialist asap.
  16. My son has low blood pressure and also takes midodrine. I take his blood pressures after breakfast, mid morning, after lunch, midafternoon. before supper and 8pm. My son always takes 3 thermotabes with a cup of water and his midodrine before he ever gets out of bed in the morning. His doctor wants his blood pressures at 110/70. I have seen him start out with blood pressures of 107/68 and 2 hours later it's 95/54. However, I noticed that my son felt better when his blood pressures were at 115/70. So his doctor and I had a chat because I was constantly giving thermotabs after every blood pressure check. I made the discovery if I gave my son the thermortabs when his blood pressures were 115/70 or below this, his blood pressures would stay up better and I was not having to give him 3 thermotabs after every blood pressure check. I have just made this discovery recently. However, my son has just been able to start exercising in the last few months and exercise helps with blood circulation. My son does salt his food and does drink gatorade. However, he takes thermotabs to help keep his blood pressures up or his blood pressures would stay too low. He has never been able to take in enough salt through his diet to be able to keep his blood pressures up. His blood pressures are more stable right now than ever but his doctor and I feel like the timing of the thermotabs and being able to exercise is the key to keeping blood pressures up. However, my son is not able to walk or stand yet and we don't know what to expect when this happens. So anyone that is able to walk and deals with low blood pressures may be able to help you more. If you have never taken salt tablets, you may want to just start with one to see what happens. Thermotabs are a buffered salt tablet and does not bother my son's stomach. My son could not take plain old salt tablets.
  17. POTS does cause cognitive issues. My son has had some problems in this area. It was scary to see the brain fog. He was a gifted student and it terrified me to see him not be able to remember concepts from day to day. I really thought it was affecting his memory and he was not retaining things. However, in school this last year I saw something totally different. The changes I saw, could be related to his treatment but I will tell you the supplements and medications that were being used and maybe this will help you. In the beginning of his condition, our doctor put him on Zoloft and Deplin (methylfolate). Through testing, we learned that my son had low serotinon levels. Amino Acids are the building blocks for neurotransmiters. My son was low on some of these and was put on a supplement to help balance these. GNC store has several supplements and shakes that contain amino acids. My son could not eat enought to keep his body rebuilding what it needed. My son also takes a medication called ER Namenda. Through reaseach, I found out that it could help with Chronic Regional Pain Syndrome and a chronic headache. I tried to wean my son off this medication because I thought it was not helping at all. My son has a constant daily headache. This medication is also used for Alzheimers disease. Instead of my son's headache staying at a 6 of of 10 pain level scale, it went back up to level 10 when I brought his dosage down to 7mg. So needless to say my son is taking 14mg of ER Namenda 2 times a day. According to research, this medication has been known to lower the pain levels of headaches and CRPS after 6 months. My son has only been on this full dosage since July of this year. However, he has taken this medication since November in 2014 and what I noticed at the end of his 2015 school year his brain fog was gone and he was thinking clearer than ever. His end of the year state testing scores for school all showed up advanced. I suspect this mediction is doing alot for my son. Brain fog and cognitive issues are no fun to deal with. Maybe you can talk to your doctor about some of the medications or supplements I have mentioned in this post. I have had to learn by observation, much patience and having a doctor willing to think out of the box after looking at all the research articles that I send him.
  18. This good news. Thanks for sharing your story! I am hoping my son's story turns out like this. He is 15 and we have finally figured out his underlying cause. So happy for you and your daughter.
  19. I am so sorry this happening to you and your daughter. One of the best things you can do is to her maintain an exercise program that she can tolerate. If she has POTS, she will feel bad and will not want to exercise. If she does not exercise, she can become deconditioned. However, keep this in mind, exercise is good for everyone whether they have POTS or not and it will not change your results of a Tilt Table Test. I have read many stories of people that were very healthy and doing sport activities and POTS hit them like a ton of bricks. Exercise does not have to be done everyday. My son was an active 10 year old boy before POTS got the best of him. It took me 10 months to find a doctor to make the diagnosis of POTS. He was not able to attend school either and had to do a homebound situation. The year after the diagnosis was also rough because our doctor was trying to find medications that would help stablize his heart rates and blood pressures. They were all over the place and he was having viruses and infections about every other month. The additional sickness on top of POTS did not help and caused other problems. These other problems were most likely the underlying cause of his POTS. However before this other problem sent him totally down , he did have a three month period of being able to stand up, walk around, ride a stationary bike, do physical therapy exercises and function as close to normal as possible. This is the exercise program that he could tolerate. He did not exercise on Saturday or Sunday. His core strenght was weak and so was posure. He started out sitting on a bench (without a back) for one minute on days Monday, Tuesday, Thursday, and Friday. He did not exercise on Wednesday. To take his mind of this exercise, he would play on the X-box. He did this exercise in the morning and in the afternoon, he rode a recumbernt stationary bike for 1 minute. The goal of these exercises was to build strength, stamina, and endurance. Every week, he rised the time up to one Minute on each exercise. So by week 5, he was up to 5 minutes sitting up on the bench and five minutes on the bike. Eventually, he started physcial therapy and did it on Tuesdays and Thursdays only. Our physical therapist knew nothing about POTS but she was willing to learn. When he started physical therapy on these days, he did biking and siting on the bench the other 3 days only. In physical therapy, he did exercises that could be done on the floor and sitting up. It was a combination of exercises and his sessions lasted 30 minutes or less. Our physcial therapist was careful to montor blood pressures and heart rates. so she knew when to back off. When my son was able to do this exercise program, we all thought his body was starting to stablize and we had figure out what he needed to be able to function with POTS. However this only last three months before his body went down totally after a double round of flu. After the double round of flu, he added more symptoms that caused his POTS condition to become worse. Eventually through testing, we found the cause and my son has been on a treatment program. After being on treatment for 18 months, my son is now able to start back on the exercise program I just shared with you. He is not able to stand or walk yet but he is gaining strength and stamina. He is having to relearn how to use musles because the autoimmune antibodies interfered with the brain and autonimic nervous system signaling. Please find a doctor to help you figure out what's going with your daughter. I would encourge an exercise program if possible. Salt and extr fluids will help but you may want to back off of that before having a Tilt Table test done. My son has had 2 of these done. A local cardiologist confirmed his POTS and MAYO reconfirmed it 3 months later. Wishing you the best and hope you find some help soon for your daughter.
  20. I found an article about these antibodies being found in adults. Don't let the title fool you because these antibodies are found in dystonia. When you get past the abstract, it mentions other illnesses associated with these antibodies. There is a reference number ( 9 in bright blue) next to this illness (dystonia) . If you go down to the references ( #9), you can read the full PDF. It was a very interesting article. Tyler is excited about getting his port out this next week. Tyler's legs and hip muscles are getting stronger. He was able to do a plank yesterday without tremors. Love seeing these baby steps of strength improvement. Here is the article and be sure to look at reference 9. http://bjp.rcpsych.org/content/200/5/381
  21. If these receptors are being found in other autoimmune illness and POTS is showing up with this illness. I would think POTS would be autoimmune. Just my personal opinion. Not hearing anything on the research at OU. I have asked our doctor about getting Tyler into the study. Our doctor said the researcher does not think anything would show up in the research test because Tyler has been treated with plasma exchange. I think he's wrong because Tyler still has POTS symptoms.
  22. Have you tried thermotabs? They are a buffered salt tablet and easier on the stomach. My son can take 3 of them with a cup of water or G2 when his blood pressures get too low.
  23. My son had low iron and D levels and this can zap your energy levels. So you might want to get those levels checked. You might also want to get B-12 levels checked. Getting out in the sunlight 10-15 minutes a day can help raise energy and mood levels. Exercise is good for you as long as you don't over do it. My son drinks 2 liters of water everyday but he also drinks liquids that contain potassium like G2, the Vitamin Water flavored Fruit Punch, or orange juice so potassium levels are not depleated. Fludrocortisone can lower potassium levels. Hopefully your doctor is monitoring these levels.
  24. This medication made my son's heart race. My son has started on a medication called LDN. It's used for chroninc pain and EDS patients. If you google LDN and EDS, you should be able to find some good articles. This medication does not work instantly but raises endorphines that will help reduce pain levels gradually.
  25. My son was diagnosed with POTS when he was 11. The Tilt Table Test confirmed his POTS condition. He has also had a few spinal taps due to severe headaches but the taps did not bring any relief to the headaches. After one of those taps, he did have to go back in for a patch. If you suspect your daughter may have POTS, getting her to a specialist would be your next step. Before my son was diagnosed with POTS, he complained of back pain and joint pain. Does anyone in the family have EDS or CRPS? These conditions can also affect the POTS patient.
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