looneymom
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Posts posted by looneymom
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Ks 42
Have you had magnesium levels checked lately? Epsom salt baths are wonderful before bedtime and this is an easy way to get this in.
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Don't know if this would helpful but you may need more potassium. Ask your doctor to check your potassium levels. My son has low blood pressures and summer time is the worse for him. I have to alternate water and G2. However, the Vitamin B water that is orange flavored is somewhat higher in potassium and has vitamins in it which might be helpful. It a little more expensive but it is very helpful when he is traveling. My son also takes thermotabs which is a buffered salt tablet that contains some potassium. My son takes 3 tablets 3-5 times a day. Three tablets is a little over one gram of salt. He always takes 3 tablets with his midodrine and the other dosages are midmorning and midafternoon. He takes Midodrine three times daily. The vitamin B water, I buy at Walmart. I don't know anything about the Cleveland Clinic but wish you the best and hope you get some more answers.
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I am so glad this was posted. I have a son that suffers from a hoarse voice but he also has some other symptoms that are unusual. I ran across this article and wanted to share it. This is an unusual connection to Spasmodic Dysphonia but it may be helpful to someone else that has a hoarse voice. I have asked my son's doctor it he could try the medication that you mentioned. His hoarse voice comes and goes and he had vocal cord dysfunction when he was younger. He knows the breathing exercises to stop the vocal cord dysfunction and has not had any problems with this condition. However, the hoarse voice is with him everyday.
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Ks 42
My son takes the extended release clonidine an hour before betime only. He takes .3mg. He started with .1 but had to go up to .3 to fall asleep and stay asleep. He cannot take it during the day time yet. However, that may be another option for him once he is able to stand up and start walking again. He has had testing for the brain neurotransmitters and his norephrinphrine levels are high. Our doctor thinks that hyperpots could be a problem but my son is not able to stand up for the correct testing to be done.
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My son had problems getting to sleep and then staying asleep through the night. He would wake up almost every hour on the hour and be drenched in sweat. His doctor started him on Extended release clonidine. He falls asleep and stays asleep through the night. No more sweating issues either.
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This week has been so exciting for this momma bear. Tyler was able to do ankle flexes wthout causing extra tremors. He was also able to use his feet to to pedal on the floor pedal exerciser. This did not cause tremors in his legs, ankles, or feet afterwards. This is major progress for him. He has not been able to pedal for over 2 1/2 years. He is excited about trying his reclined stationary bike next week.
He is doing one treatment of pex a week and I have been trying to wean him off some other medications to see if those medications were helping or hurting him. His cardiologist also wanted to know what was helping because he felt like this would provide other clues to Tyler's medical condition. I tried to wean Tyler off of the Namenda but that was a no go. His headache pain level was at a 6/10 but jumped all the way back up to a 9/10. Namenda helps regulate NMDAR receptors and this receptors release glutamate. Tyler's past neurotransmitters testing has shown high glutamate levels. High glutamate can cause headache and neurological problems.
The next medication I was told to wean him off was Zoloft. So I really did some research and was concerned about side affects of coming off this medication. Starting cutting down on this medication this week. So far so good. Our doctor is pleased but concerned. Tyler has had problems with low serotinon in the past, and high dopamine levels in the past. Hope everyone has a good weekend and stays out of the flood waters.
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The twitching is a symptom of POTS. When my son was walking it would start while he was walking. Our cardiologist called them orthostatic tremors. If you get on the POTS facebook group, this symptom is mentioned in many post. However, it seems to be more common with teenagers that have POTS. From what I have read it is a symptom that comes and goes.
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It's been awhile since I posted about Tyler. He is finally going down to one treatment of Pex per week. His doctor kept him on 2 treatments a week for the months of December 2013 - April 2014. He is gaining strength. When he first started Pex in August last year, he could not sit on a bench without back support. He is now able to do this for several minutes. Since February of this year, Tyler has been able to start doing core exercises and is beginning to gain strength. He is also able to do these without having tremors start. He is still not able to stand stand up and walk but he is able to balance on his knees in an upright position without having tremors. His body allowed him to start doing this a couple of weeks ago. His progress is slow but steady.
He still has a daily headache but his pain levels dropped down again this last week. Tyler was put back on Minocycline this month but another supplement he was on has been raised to a new level. According to new research this supplement can help ease neuropathy pain. Our doctor thinks the combination is most likely helping Tyler because he is being weaned off the Namenda. The Namenda had very little affect on his headache or scalp pain.
Tyler has very little fatigue during the day time and is sleeping through the night. He did get the flu in February and none of his symptoms flared like they did in the past. He stayed at his base line and was able to continue doing his core exercises without problems. He is able to stay focused and complete his daily school work without having to take naps. He passed all of his end of year state test examines and scored advanced in reading.
I am nervous about him going down to one treatment but if he goes down hill, our doctor will bump him back up to 2 treatments a week. If he stays stable, it is a good sign that the treatment has supressed his body enough and the anti neuro antibodies caused by past infections are out of his body. The pex seems to have stablized his immune system but still have several months of treatment before he is totally off the pex. He will be doing one treatment a week until the end of June and if all goes well, he will start going every 2 weeks.
He is still on his Midodrine but is taking less. However, his blood pressues still fall down about every 5 hours but he is due for his next dosage of Midodrine. However, I don't always have to give him a gram of salt with the Midodrine because his top number is at 110 or above. Some days he is only getting one or two grams of salt besides salting his food. If improvement contiues, he will be able to drop down on the Midodrine some more.
Here is the article on the supplement that may be helping Tyler with his neuropathy pain. I have done more research on this supplement and it helps cancer patients with this type of pain.
http://www.sciencedirect.com/science/article/pii/S2213231714000214
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Hi and welcome aboard. Have you tried compression socks or hose? Sometimes that helps, if the medications don't. Lots of good information on the forum and hope you feel better soon.
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My son has POTS and the basal gangla antibodies associated with strep infections. His POTS was diagnosied first after having Mycoplasma pneumonia infection. After the POTS diagnosis, my son kept adding more and more symptoms after the following infections: sinus, sore throats that were negtive on rapid strep test, flu, and ear infections. Strep infections can cause autoimmune antibodies according to molecular mimericy. This happens when the strep infection does not get cleared from the body. These antibodies have also been found in patients that have Sydenhams Chorea or PANDAS. My son has the dignosis of POTS with autoniomic antineuroal antibodies because the antibodies can damage or cause heart failure. He is under the care of a cardiologist and is recieving treatment.
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Here are some newer articles you might want to look at on Namenda.
http://www.healthcentral.com/migraine/medications-193210-5.html
http://www.goodrx.com/blog/namenda-study-migraine-headaches/
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Hi Karen
My son has also been diagnosied with a Daily Persistant Headache. He also has severe scalp pain and hair washing and hair cuts are unbearable. Our doctor started him on a prescritption of Extended Release Namenda 7mg 3 times a day in January of this year. There is at least one research study, maybe 2 on this medication being used as medication to treat this kind of headache.This medication was not intended to be used to treat headaces. It is used to treat Alztimers disease but some studies have been done with its use to treat headaches. The research study indicated pain had decreased after 6 months use. I will see if I can go back and find the studies. Maybe this would be another option for you to look at. Since my son has started using it, his headache pain has come down a little. So he will be staying on it for awhile to see if it will help.
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Hi Karen
Welcome and thank you for sharing the video. I don't know anything about the treatment you are asking but what does TPN stand for. I am wondering if this treatment would help my son. You have been on a long journey and I wish the best for you and your daughter. My son has POTS and with autoimmune antibodies and being treated with plasma exchange. He has been sick since he was 10 and is wheelchair bound since his illness took a worse turn. He will be turning 15 soon and dreams about driving. Like your daughter, he wants his normal life back also. So glad that you have found specialists to help with your daughter's health condition. Wishing you the best and hope this treatment will help your daughter.
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If I am understanding this test, her heart rate went from 78 to 113. That's a difference of 32 points. Under the old criteria, it would be POTS. My son qualiified under the old criteria and also had very low blood pressures. If you have not tried compression socks, adding salts, and fluids then I would probably call the doctor to see if this could be your first option before trying medications. However, if your daughter cannot retain the fluids to keep salt levels up, the florinef is a good medication to help with this problem.
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Hope everyone is well and stays away from the flu bug. Tyler caught the flu the last of January. It lasted the full 2 weeks and he took Tamaflu medication. About 5 days later, he went through a second round again that lasted a few days longer. He has lost 10lbs but is back to eating and drinking milk. I was really dreading another illness like this with Tyler but the plasma exchange finally proved that it was helping. None of his symptoms got worse and he is functioning at the same level he was before he got sick. So I am very relieved that the plasma exchange is helping his immune system.
Tyler is still doing plasma exchange twice a week. However, he only had 3 treatments the month of February because he was unable to eat or tolerate any milk products. Our doctor wants him to do 2 treatments a week until the end of March and then he will decide if he goes down to 1 a week. However, Tyler's symptoms are not decreasing and this is discouraging. Our doctor does suspect other autoimmune antibodies/receptors are involved but to test for them, Tyler would have to stop plasma exchange for 3 months. At this time, it is to risky to stop treatment since it is helping Tyler.
I have made some post in the past on autoimmune encephalities and the autoimune antibodies found in those illnesses. Our doctor suspects that Tyler has high levels of some of the NMDAR receptor subsets. The subsets can cause different symptoms. A clue to this was Tyler's high brain levels of glutamate. These NMDAR receptors regulate this in the brain. Tyler is not celiac or gluen sensitive according to testing. Some new research has come out on patients that have been found with these receptors. Their first symptom was a movement disorder (tremors) and their illness was caused by a virus, flu, or some type of infection. Tyler's tremors came on very strong after a double round of flu in 2013.
Another article I found ( 2nd article) really gives me hope that Tyler can have a full recovery. Full recovery is 2-4 years after treatment has been started. Plasmapharisis (plasma exchange) is the first line of medication to treat autoimmune antibodies that can cause encephalities type illness. In Tyler case, the antibodies for Dopamine/post strep encephalities have already been found and the next step of treatment would be second line medications which include Rituxmab or cyclophosphamide. I am hoping that we can avoid using these medications. So I have started Tyler on a supplement of serti L-glutathione to see if if will help detoxify his body and lessen his symptoms. L-glutathione is the body's superior antioxident and can only be found in some raw fruits and vegetables. It is destroyed through the cooking process. So I have started juicing oranges for Tyler everyday. For parkinson's patients the research is impressive about IV glutathione. Here are the links to articles. Hope they are helpful to someone else.
http://onlinelibrary.wiley.com/doi/10.1111/dmcn.12321/full
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Weightlifting is good but riding a stationary bike will help with circulation needs. When you pump your legs, you are pumping blood through the veins. However, before my son could do that, he had to work on core muscle strength. His first exercise was to sit on a bench without a back for 30 seconds to one minute daily. My son has had several set backs but since he started his last treatment, he has started gaining some strenght in this area. It is the only exercise he can do without causing his tremors to start up. Currently he can sit up 3 minutes on a bench but has to have a chair in front of him for his arms to rest on. When he sits up in the bench with legs down, his arms will start to pool if they are hanging down. Here's the interesting twist, when he sits of the the floor kriss, cross, he can sit up for 9 minutes and his arms do not pool with blood. Since this is the only exercise he can do without causing tremors to start, he alternates every other days with bench and floor because sitting on the bench with legs down is working on balance issues also.
At one time my son was able to ride a stationary bike up to 15 minutes. However, he cannot do this today. This exercise makes his tremors start. However, when he was to ride a stationary bike, he started by riding just 30 seconds a day. He did this every other day. The next week he rode for a minute every other day. He kept raising it up 30 seconds a week. However, he did get to a point that he could only do so much because his body would not recover from the riding. You have to figure out that out before you get to that point. MAYO recomended that he get up to 30 mintutes 5 times a week. However, my son could not ride every day because his body could not recover. Just be careful and listen to your body. Exercise is important but can cause problems if you over do it.
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Welcome aboard. Hope you feel better soon and find some answers you need.
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Hi and welcome to the forum. Yes, Katy is right about about strep as an autoimmune connection to POTS. My son was diagnosed with POTS when he was 11 but had many strep and mycoplasma pneumonia infections. These autoimmune antibodies can cause POTS symptoms. My son has high Dopamine receptors and high CamKinese levels. Some of the autoimune antibodies can be checked for through testing and are associated with autoimmune encephalities, Lupus, and many other neurological diseases. I don't want to overwhelm you with informtion but you probably need to make sure you do not have an active strep infection. To check for this, you need to have the doctor do a strep culture. Here is an article on Autoimmune encephalities and all the autoimmune antibodies that can cause problems in the body. If these things get to high in the body, it can cause encephalites but these antibodies can also affect the autonomic nervous system and cause POTS symptoms. NMDAR antibodies, Dopamine antibodies and strep antibodies can cause POTS heart symptoms like tachycardia. If you have an active infection, you need to get a handle on it first. Again, don't let this article overwhem you. It is huge and look at the section that deals with Post strep antibodies. Page 53 is where it starts talking about post strep antibodies and other testing needed to determine if there is a problem
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Hi and welcome to the forum. Has your daughter been checked for any yeast or fungal infections. I have read articles that this can sometimes cause the strong odor under the arm but so can puberty. My son was 11 when diagnosed with POTS and he had the strong under arm odor. He did not have any infections but his hormones were really kicking in because he would wake up drenched in sweat. The extended release clonidine helped this problem.
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If it is possible for you to go back for the other appointments, I would try and go. Vanderbilt does so much research and Tyler's cardiologist speaks highly of this place. He would send Tyler there but these doctors will not see anyone under the age of 18. Hope the new medication helps and will get you through until your next appointment.
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So far so good with the Namenda. Before Tyler got the flu, his headache pain levels were at a 6 1/2 out of a 10. When Tyler had the flu his pain levels were at a 10. Yesterday, he was at an 8 but he wants his headache pain to go down like it was before the flu. He has not had PEX treatment for 11 days but starting eating much better yeasterday. So hopefully he can do treatment on Friday and his headache pain levels will come down some more. I wondering if the combination of PEX and Namenda is helping the headache.and other pain symptoms. Its a wait and see waiting game.
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I have asked about this at Tyler's last appointment. It's on hold right now since he has the flu. If you can find a doctor that has an interest in MCAS, they might be willing to run these test. MCAS is new to many doctors and they may not know what testing needs to be ran.
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Welcome aboard! So sorry if you are struggling with your illness but you have found friends that understand what you are going through.
Two Treatments To Go
in Dysautonomia Discussion
Posted
Tyler had a doctors appointment last week. He is making progress with physical therapy exercises. However, he is not able to stand or walk. We are still dealing with daily headache/scalp pain and hypersensitivity that indicate chronic regional pain syndrome. Tyler has been on plasma exchange treatment since last August. By now the basal gangla antibodies that were causing problems should be out of his system. However, there is still the possibility that Tyler's body is still making the antibodies. The only way to figure this out is to see what happens when the treatment is eventually taken away. He has 2 treatments in July two weeks apart. After the last treatment, he will see the doctor 4 weeks later. If he continues to make progress and gain strength with physical therapy exercise, he will no longer need the treatment.
However, if he loses ground, our doctor will rerun some testing and put him back on plasma exchange to keep the bad antibodies down. There is the possibility that some of the symptoms that Tyler is left with is perment damage. However, if he loses the ability to sit up on a bench or riding the stationary bike before either treatment, it is possible that other antibodies are involved in his health condition. Tyler could have tested seronegative for Myasthenia Gravis or other antibody test were ran earlier. Most of this testing is for adults and is not sensitive enough to pick up in children.
Tyler is still on the Namenda and the doctor is raising this medication dosage up. Back in May, we tried to wean Tyler off of this medication because we thought it was not helping. Tyler was taking an extended release tablet 3 times a day. On 2 tablets his headache did not get worse but when we took him down to one, his headache went up to a 10/10 within 48 hours. Needles to say I put him back on the full dosage and 3 days later it was at 7/10. Just this past week it dropped down to a 6/10. Our doctor decided to raise the dosage up starting this week. He is also waiting on approval from the OU medical school board to prescribe Low Dose Naltrexone which should help with the chronic regional pain syndrome. In the mean time, we are hoping the increase in Namenda will help with the pain isues. In research, Namenda has been proven to help with the chronic regional pain syndrome.
Tyler is still on all of his other medications however he is being weaned off Zoloft. This started after seeing his doctor in April. We are lowering his dosage every 3 weeks. So far so good. His moods are stable and no brain fog/memory problems. Tyler is very excited about the possibility of not having to do any more treatments.