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looneymom

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Posts posted by looneymom

  1. Do you have classes every day? If so, you might not to do exercise on those days because the activity that you are forcing your body to do. You may need to increase water and salt or try G2 on those days to see if it makes a difference. My son was finally able to start an exercise program this last year but when school got started, he had to back off doing exercise every day.

    His fatigue levels were high and he was not able to stay focused on school work. His body had to get use to the extra stress of school work and to try to maintain a level of exercise that would benefit him. Before school started , he was use to doing exercise everyday. However, this routin took it's toll pretty quickly and the first week of school was rough. The following week I backed him down to 3 days of exercise. He had to do exercise m-W-F and rest on the weekends for several weeks and then he was finall able to do M and T, rest on Wednesday, and exercise on T and F and no exercise on the weekend. It is important to stay as active as you can but not to over do it. Try to drink 2 liters of fluids every day and more on very warm days. It might help to alternate water and G2. My son always had problems getting in enough salt, so he takes 3 thermo tabs about every 3 hours. If you are burning a lot calories on days you have classes, salty snacks might be helpful. Do try the compression socks or hose. My son likes the compression socks that come almost to his knees.

  2. If you think a medication is not helping, I would ask the doctor if you could wean your daughter off the medication and see if you notice anything better or worse. If something gets worse, you will have your answer if the medication is helping. Or if the doctor thinks she is on too many medication, what would his suggestion be.

  3. Happy that you are going to be able to see a specialist but praying for a different diagnosis. My son had a lot of strange symptoms in the beginning. In fact when he went to the hospital the first time, he had a stiff neck and his joints were stiff. He spent 10 days in the hospital and they ran any and every test available. However, the only thing that showed up positive was the tilt table test. I don't know anything about MSA but I will look it up. Rember to take one day at a time and take care of yourself. Praying for a different diagnosis and for your family.

  4. Hello,

    I have a son that is 15 and I sure hope he outgrows POTS. He has had quite a journey so far. However, not long after his diagnosis, when he was 11, he had a nasty virus and totally went down on me. His muscles turned to jello. He could sit up and 24 hours later after this virus hit, he was down for the count. All of his muscles were affected and I had to rent a body lift because he was 5'10" and weighed 180lbs. He could not use any muscles to support himself in sitting, standing, or walking. His cardiologist was able to get him into a neurologist and she did a spinal tap and checked his levels of Amino Acids, serotinon, and dopamine levels. Some of his amino acids were way too low and so was his serotinon. So my son was started on an amino acid supplement from the GNC store. One month later, he was able to sit up on his own, stand, and walk on his own. Later on he started drinking a protein shake that was loaded with amino acids and it's also a GNC product. Amino acids and protein play a big role in muscle strength, nerve signaling, and balancing neurotransmitters. My son still takes the amino acid supplement every day. Those were dark days for us. Since being on the amino acid supplement, he has never experienced this jello muscle situation. Eventually, our cardiologist did figure out the underying cause for my son's POTS. He had autoimmune neuro antibodies in the brain that caused problems with the autonomic nervous system, and other severe neuroloical problems. These antibodies were caused by infections like strep, and mycoplasma pneumonia. My son has been through plasma exchange treatment and is doing much better. His POTS is not gone but he is much more functional. A good exercise that helps build the core muscles in the back is sitting up on a therapy ball. My son has week core muscles too. He started sitting on the ball 30 seconds a day for seven days a week. He raised it 30 seonds every week and he could sit on the ball and watch his favorite tv show. My son uses the 75 inch ball because he is 6' 1". He is sitting up for 17 minutes now and has started raising the time up a minute every since the beginning of January. Getting testing for amino acids and the testing that Sarah suggested would probably be helpful. My son does have problems with dopamine and norephrinphrine levels. He needs to go through the testing that Sarah has mentioned but he cannot stand up for a long peroid of time yet. Wishing you the best and hope you find some answers soon.

  5. Annaliese

    I don't don't know if he has a genetic IgA deiciency. His is considered low. On his test it was 42 and the normal range is 60 and up. To be considered deficient, it would need to be below 10. However, this might be something I need to look at later on, if he does not continue to make progress. He has been to an immunlogist and had all that testing. The autoimmune antibodies were found through a test called the Cunningham Panel. These antibodies have even been found in adults. Did you by any chance have trouble with infections like strep, ear, sinus, or pneumonia? If so, I would be happy to post an article that talks about these antibodies found in adults. Keep asking questions and digging through research. Find a doctor that's willing to dig through the research with you.

  6. He was getting worse anyways but the IVIG sped other things up.. I think because he had the low IgA and the hospital pharmacy would only use one brand of IVIG was part of the problem. You can get some forms of IVIG with very low formulas of IgA but our cardiologist could not order another brand. It was the only brand the hospital would order and Tyler had to have a very slow infusion. He would have to stay overnight just to get the dosage the doctor wanted him to have. After the third infusion, I told the doctor we were not seeing any improvement and things were worse for Tyler.

  7. My son tried IVIG for 3 months but after each treatment his symptoms kept getting worse.. His doctor was able to get plasma exchange for him since his testing was positive for autoimmune antibodies.. He did this treatment for year and his symptoms have improved. His POTS symptoms are not totally gone. My son was totally recliner and wheelchair bound before this treatment. The autoimmune antibodies that were found in his brain were making POTS and neurological problems much worse. He stopped the plasma exchange in July 2015. In June 2015, he was finally able to ride a stationary bike without his legs shaking. He has gradually been able to increase his biking and do more physical therapy exercises. In November 2015, he finally was able to stand up by himself and a week later started walking. His blood pressures are more stable and instead of taking 30mg of midodrine 3 times a day, he is down to 20 mg 3 times a day. His POTS condition was part of an underlying autoimmune condition. He is 75% percent better. He still has a ways to go but without plsama exchange, he would have never gotten this far. He needed the plasma exchange to remove the autoimmune antibodies that was making his POTS condition worse.

  8. Kris

    Not all doctors know about Low Dose Naltrexone. If you are interested in trying this medication, I would recommend that you call your local compounding pharamcy and find out what doctors will prescribe it. It will regulate your immune system. There is an article online in PDF form called Low Dose Naltrexone for Normalizing Immune System written by Bernard Bihari MD. He was the first doctor to discover the benefits of this medication and use it with patients that had different autoimmune diseases.

  9. Yes. But this was trial and error for for my son. My son wanted medications to alleviate symptoms. The biggest deal for my son was sorting out symptoms and figuring out what they were related. Not all of his symptoms belonged to POTS. Some of his past testing has been very helpful in figuring this out. So instead of just listing the symptoms that were bad, I listed a few test that were helpful to us. The post is a little long but hope it helps.

    The 23 and Me testing was helpful because it helped his doctor figure out that he had needed the methyl B vitamins. My son takes a prescription form of L-Methylfolate (Deplin) which is very helpful for brain fog and cellular energy. If pain levels were not overwhelming, he could concentrate on school work.

    Other symptoms that my son suffered from happened because of antibodies that built up in the brain that were caused by strep, mycoplasama, and other virues. The only way to get these antibodies out of the system is to boost the immune system with IVIG or remove the antibodies through Plasma Exchange. Ten months before my sons POTS diagnosis, he had Mycoplasma pneumonia and a few weeks later his headache and scalp pain started. To keep the infections at bay, my son takes minocycline and penicillin daily.

    His headache and scalp seemed to be his worse symptoms. Through research I learned that the scalp pain was most likely a nerve problem because all the nerve roots are in the scalp. Tyler tried all the medications possible to get relief from the headache and scalp. The first medication that brought some relief from the headache was Extended Release Namenda. This medication regulates NMDAR receptors. When these receptors are not working right, the glutamate neurotransmitter levels go sky high. These levels were cofirmed to be high through a neurortransmitter level test. I have always been suspecious that Tyler might have had NMDAR encephalites but it would have taken a spinal tap to confirm that diagnosis. However, if that was part of the problem, the plasma exchange would have taken care of that problem. In addition to the extended release Namenda, adding Low Dose Naltrexone this last July was a major turning point for Tyler. After being on this medication for 10 weeks, his headache and scalp are totally gone. LDN does help with nerve signaling and his tremors are much less. Tyler was also able to stand and start walking the month of November. I'm sure that LDN also had a part in this because many MS patients that have not been able to stand for years, regain the ability to do this after started on LDN.

    Another important test that Tyler had run was the Neurotransmitter test. He has had 2 of these. One was done 3 months before the POTS diagnosis and the other 2 years after the diagnosis. In addition to these test, he also had a spinal tap to check for amino acid defiences. Amino acids are the building blocks for neurotransmitters. He was deficient in the amino acids to build serotinon. So this would explain why Tyler needed the Zoloft to help keep and recycle his serotinon. His neurotransmitters test showed low levels of GABA and Serotinon and high levels of Norephrinphrine and dopamine levels. High Norephrinphrine levels and dopamine levels can also cause sleep problems. To solve the sleep issues, my son takes extended release clonidine at night. Otherwise, it would take him a couple of hours to fall asleep and then he would wake up every hour on the hour. Extended Release Clonidine has been the answer to sleeping throught the night. A sleep deprived body cannot heal itself. Sleep is a must for every POTS patient.

    Tyler does take Midodrine. However, 4 months ago, he was able to drop down to 20 mg 3 times a day instead of being at 30mg 3 times a day. The Low Dose Naltrexone was the last medication added and it took care of the headache and severe scalp pain. His leg tremors when he is sitting in his recliner are much less. However, I thought the Low Dose Naltrexone was helping more with sleep and I weaned Tyler off of his ER Clonidine with the doctors approval. A week later, Tyler was back to sleepless nights and other symptoms that we have never seen before. He was quickly put back up on his normal dose but it took a month to get his normal sleep pattern back. All of the OCD symptoms are gone except one, but it's much less. ER Clonidne is regulating sleep, norephrinphrine, and dopamine levels. If dopamine levels get to high, then depression and anxiety can set in. One way to counter act this is with a high protein diet and taking supplements of GABA and L-Tryptophan. A book called The Mood Cure by Julia Ross goes into detail about diet and supplements that help balance dopamine, serotinon, and GABA levels. Tyler's doctor wants him to try weaning off the Zoloft, when this last symptom goes away and continue with the L-Trypyophan.

    As you can tell, Tyler is on several medications but all of them are necessary to be on. In the last 8 months, I have actually tried (with doctors approval) to wean him off of ER Namenda, Zoloft, and ER Clonidine. Whenever, I did this his symptoms got worse. All of these medications are used to regulate neurotransmitters. So having a neurotransmitter levels checked might be helpful because they affect the autonomic nervous system. This testing can be ordered online and it's the same testing that my son had done. Tyler is 75% better but has lost too much core strenght to be back to his prepots level. However, if he continues to improve with exercise, my guess is that he will be there in another year.

  10. Sorry Kris

    Hope you can come off of it soon. Tyler's doctor tried him on a low dosage 2 years ago and it was horrible. Symptoms were so much worse. I have heard of the other medication but don't know anything about it. Have you tried the Low Dose Naltrexone? It helps with RA, fibromyalgia and symptoms of other autoimmune disease. It does not suppress your immune system. Tyler is on this and all his chroinc pain and headache is gone. I went on it a few months ago for pain issues and found out that I had fibromyalgia with a high ANA. It's help me with pain issues. Don't know if LDN would help but thought I would mention it to you. BTW the LDN has not lower or affected Tyler blood pressures. In fact his blood pressures seem to be more stable since he started this medication.

  11. My son is able to ride a stationary bike for 25 minutes. His doctor wanted him to go up to the next resistance level. So this is how he wanted him to do this. Bike for 24 minutes at beginning resistance level and raise up the next resistance level on the last minute. He wants my son to ride a total of 25 minutes but gradually increase the resistance a minute every week. My son started on this new plan in December after he saw his cardiologisit. This week, he is riding 20 minutes with beginning resistance and the last 5 minutes with the next level of resistance. When he can do all 25 minutes on level 2 resistance, then he will move up to level 3. My son bikes 3 days a week and does leg and core strengthening exercise 2 days a week. He is just now starting exercise that require standing and adds weight with ankle weights and hand weights. My son is not ready for the gym yet. When he is able to lift over 10lbs with leg and arm weights, he will be ready to go to the gym.

    However, it sounds like you might be ready for the qym to do exercises like leg presses and leg curls. If you can lift more than 10 lbs in ankle or arm weights, then the gym is probably the place to go and work with a trainer.

  12. I think exercise is very individual thing. Tyler is now riding the first 20 minutes on his r bike without resistance and then after that, he raises the resistance number up one and adds a minute each week until he is up to a total of 25 minutes. This week, he will finally be a the 25 minutes with the last 5 minutes at a higher resistance. Next week, he will up the resistance knob when he starts on minute 19 out of 25 minutes. His doctor does not want him to go over 25 minutes but eventually he will be riding the whole time amount of 25 minutes at the next level of resistance. His bike has 8 levels of resistance, so it will be awhile before he gets to the highest level of resistance. He does the bike 3 days a week and then 2 days a week he does strengthening exercises. He does all of his exercising in the morning becuse he wants to be done with it before starting on any school work. With school in the picture, it is hard for him to exercise everyday and his body cannot keep that pace. So he takes a rest day Wednesday and Sundays. In the afternoons, he has started doing some timed walking if the weather cooperates. He still sits up on the bench for 15-20 minutes 3-4 days a week in the afternoon. The hardest part after being down for so long is building up the core strength. However, he is finally able to tolerate sitting up in his wheel chiar for 45 minutes and enjoys taking a quick trip into Walmart for a few items. His doctor is allowing him to go out a little more as long as we go when the crowds are small. Tyler doctor has told us that exercise has to be increased slowly and increase only by 30 seconds to one minute a week if it involves walking or biking.

  13. Have you tried physical therapy? You may need to strengthen some leg and core muscles. If your core muscles are weak you will not be able to stand or walk for a very long time. Talk to your doctor about seeing a physical therapist. If you are not making progress in this area, your PT can determine what walking devices you may need if this is a condition is going to hinder you. How does the mitral condition affect POTS? I don't know anything about this condition. A cardiologist that understands POTS and this symptom should be able to tell you what you need to become more functional.

    My son was so bad that he needed a wheelchair. His doctor wrote the prescription and his physical therapist helped us figure out what type of wheelchair he needed. He needed a powered wheel chair because he could not regain upperbody strength. My son's POTS conition was made worse by an underlying autoimmune condition. My son just starting standing and walking a month ago after being down for almost 3 years. He has been doing core strengthing exercises at home for several months but he is going to be starting some Professional physical therapy soon to see how much further he can progress. Our doctor does not know if he can have a full recovery or it he will outgrow his POTS.

    Keep your chin up and don't get discourage about walking. POTS is a rollarcoaster ride and you really need a good doctor to help you get through this journey. Don't know if doing physical therapy would help you or not but it might be worth mentioning to your doctor.

  14. Just wanted to share this article about Inositol. Tyler is doing very well. He had his best day ever yesterday and it seems that his clonidine is getting back into his system. The symptoms that happened after he was taken off of it, all of them are gone except one. However, yesterday I was also able to back off on his dosage of Inositol. To help control the symptoms, I had to use 14 grams for several days but yesterday things were so much better, he only needed 12 grams. This suppplement has so many benefits but I am having trouble finding research to back up some of the claims. However, this article does share much research and wanted to share it with you. It does seem to help with energy levels and it is found in energy drinks. Still looking for more good research but thought you might want to see this one.

    http://www.lahey.org/Departments_and_Locations/Departments/Executive_Health/Ebsco_Content/Men_s_Health.aspx?chunkiid=21766

  15. Yes Strep can cause major damage. Do not fool around with this. This is what caused my son's autoimmune antibodies and made his POTS condition worse. It may have have actually caused his POTS condition. I think it would be best when your doctor does a strep culture after you are off the antibodies 10 days see if the strep is cleared out of your system. If your doctor does not follow this protical you may want to get to a doctor that will. A strep culture test, Antistreptolysin O Ab test(lets you know if strep antibodies are present now in your body) and the Anti-DNase B strep Antibodies test lets you know if you have had past strep infections within the last year. Strep infections can be dangerous and cause heart damage. Please get to a doctor that can treat the infection and keep the infection out of your body.

    If your body does not get rid of the strep infection this can turn into an autoimmune illnesses. This happened to my son because we could not tell when he was having a strep infection. He would spike fever but rapid strep test was negative. BTW this is a bad test to check for strep. My son had the Anti-Dnase B Strep antibodies test which was very positive. If the the body cannot get rid of strep, the infections go autoimmune and basal ganglia antibodies may appear. Don't mean to scare you but these antibodies do attack the brain and heart. The test my son had to determine if the antibodies were present was the Cunningham Panel. The Cunningham Panel is used to diagnose PANDAS/PANS in young children. However these antibodies do occure in adults and you will not fall under this diagnosis because you are an adult. My son was not diagnose with this either because his symptoms did not happen overnight and he did not meet all the criteria.These autoimmune antibodies are caused by strep. If things get worse for you, you may need to have this test ran. Here is the information on the test and the lab that does the test. Please feel free to pm for more infromation.

  16. Hi Rich

    Sorry to hear that you are having a rough time. Have you looked into the Low Dose Naltrexone? Lots of information online about LDN. However, you might want to look at Inositol Powder. It's also known as B8 and found in energy drinks. I started my son on this medication after he had some severe OCD symptoms show up. The symptoms came on very quickly after he was taken off his extended release clonidine. This supplement seems to have many benefits. Here is an article that mentions several studies about Inositol. I have read a few articles that it helps with Mitro problems but have not seen any studies about it yet. Still looking for more information. Hope you feel better soon.

    http://www.lahey.org/Departments_and_Locations/Departments/Executive_Health/Ebsco_Content/Men_s_Health.aspx?chunkiid=21766

  17. It's so great that you can stand up but if I were you, I would ask your doctor and see what he wants your heart rate to be at when standing up. The reason I say this is because everyone has a different heart range to be in because of height, weight, and gender. If you know what your heart rate is supposed to be, then you can pace yourself a little more. My son has a pulse ox meter that measures heart rate. When we are out, I always have it in my purse or around my neck because comes in a little pouch and can be worn around the neck. I got the pulse ox at walgreens and we are using it more during his exercise routine.

    If you are trying to get yourself to a better place of being able to function through out the day, exercise can help but you need to know your limits. The best advice I can give is start very slow. MAYO only recommended for my son 1 minute a day for bike riding 3-4 days a week. Then increase it, 1 minute a week. My son uses a recumbrent stationary bike. To build up core muscles while standing up, you can do the same thing by standing up or walking for 1 minute 2-3 times a day. After you are finished, you can take your heart rate if you have a pulse ox meter.

  18. TWynnB

    Tyler was on .3 mg of ER clonidine but was weaned down a dosage every 2 months. He was sleeping through nights even at 1mg. With the symptoms that popped up so quickly, I'm thinking he may be HyperPOTS. His doctor has mentioned this to us but Tyler has never been tested.

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