Connie

Hello, What do you drink for all your fluids? Are you drinking things with a high sugar content? In addition it sounds like you might need to use a mouthwash like ACT that has fluoride. ACT helps to strengthen teeth. ACT measures the amount they want you to use. You use it once a day. I use it right before bed because you cannot have anything to eat or drink for 30 minutes. I would also ask for fluoride twice a year when you have your teeth cleaned. There are some studies recommending that you chew sugar free gum to help prevent tooth decay. (I saw an interview with one of the dental professors from the UNC Dental School talk about these studies.) But I know of people who chew sugar free gum with a lot of tooth decay. Your dentist should be able to make some recommendations. I hope this helps. Hope for All

Sam, Have you tried the Nuvigil? Some insurance companies will pay for it. It might be worth a try to see if it helps at all. They are used to treat the same thing - narcolepsy. Hope

Hi everybody, I keep reading about some of us that are experiencing food sensitivities. I just want to share a couple of books that talk about all the foods that are bad for you. The first book is Anticancer by David Servan-Schreiber, MD, PhD. When he was diagnosed with brain cancer, he begin looking into what we eat and what the foods are actually doing to our bodies. A link to his website is below: http://www.anticancerbook.com/ He also has a blog with discussion as a sidebar. The other book is "Eat to Live" by Joel Fuhrman, MD. I am starting to read "Eat to Live" now. Just some information I found concerning food sensitivities. Hope for All

Julie, How did your doctor appointment go yesterday? Hope

Bev Ray, My son is 14 and weighs about 140. He takes 200 mg of Topamax twice a day to help with his migraines. He had to have the amount adjusted this year. He takes Topamax to help with his migraines and he has POTS. He still has headaches daily but if he misses a dose of his Topamax, he can definitely tell. His headaches are more severe. He takes Tylenol but just recently told me it doesn't help. He has tried prescription medication to help but the one he tried makes them worse. Topamax seems to help him but he still has headaches daily. Hope

My son almost always crashes after taking baths and/or showers. He puts off both as long as he can. In addition he also has the severe headaches and pain in his joints and some muscle pain. I think the two problems he hates the most are the severe fatigue and not being able to think and remember. He was a straight A student with an occasional B (maybe two B's ever) until POTS. Now he can't remember anything. This time of the year seem to be worse for him. He tries to take shower before bed time so he can crash for the day. That unfortunately is the best we have come up with to deal with the crash. And by the evening sometimes he is so tired he cannot take the shower or bath but at least he does not ruin a good day with the crash. Try not to give up. Try to remember better days are coming. I hope both of you are better soon. Merry Christmas and Happy New Year to everyone.

Did you have an MRI yet to check for MS?

I called in December and my son had an appointment in February. I was told he children get appointments quicker. My son was 13 at the time.

When I took my son to see Dr. Grubb, he recommended reading Anti Cancer if we wanted to change our diet. link from author: http://www.anticancerbook.com/ A friend of mine recommended Eat to Live by Joel Fuhrman, MD. Both books talk about a major change to the way you live. Merry Christmas everyone and Happy New Year.

Mack's Mom told me she uses Tumeric to give her energy. You can get it at GNC. We did not try it because I am trying to have my son checked for mast cell disorder. He had a couple of bad reactions and he is scared to try it right now. You might give it a try.

Does anyone else have trouble keeping doctor appointments? I had scheduled a doctor appointment with a new cardiologist for my 14 year old son. Today was the second appointment we had to miss because it could did not have the energy to get ready to go. I told them I would call back when he gets better. This year has been worse than ever as far as fatigue and energy levels are concerned. Usually he is better in the summer and gets worse this time of year. This year he did not improve very much at all over the summer. He is having horrible brain fog. He cannot remember anything. He was having horrible chest pain; we went to the hospital on Sunday, December 5. The doctor told us he is pretty sure it is related to POTS. I guess we are lucky this is only the second time we had to go to hospital in 6 years. Today his back was hurting. I think he must have pulled a muscle. He wanted me to put Icy Hot on it to see if it would help. After I put Icy Hot on it, he kept complaining it is getting too hot. After about 5 minutes I checked his back because it said it was starting to itch. Sure enough he was having a reaction to the Icy Hot. Extremely red, looked like he had been burned and was about to blister up. I was it off with soap and cool water after about 5 -10 minutes rinsing the skin with cool water the redness starting going away. Anyone have this type of reaction with Icy Hot? I was finally able to get an appointment with Dr. Patricia Lugar at Duke for her to evaluate him for mast cell disorder. His appointment is the beginning of June. Well enough for now. I am wondering if other people have the same problem keeping Dr. appointments. It is so hard to try to stay upbeat and have a positive attitude for him. He is starting to repeat what the cardiologist told us several years ago. It will get a lot worse before it gets better. It is to the point now he feels like he is guinea pig because we try a new medicine just about every appointment. I keep telling him maybe we can find the right combination for him soon. Is everybody ready for the holidays? Thank you everyone for being here on the forum for us, you are an immense help to me and my mental health. I am so thankful to have found other people who know what I mean when I talk about all the medical struggles with my son.

Julie, I saw you referred them to Dr. Patricia Lugar at Duke. I called about a month ago and they told me she does not see pediatric patients - my son is 14. He is having more problems with hurting in his chest, itching especially when he is stressed. So we have an apppointment with his cardiologist at Duke on Monday. I am hoping his cardiologist can either recommend someone else or call Dr. Lugar to see if she will make an exception. I understand the frustration at finding a doctor. We need someone to see in NC that has the time to help us find a medical combination that will help my son. He is still unable to process information and retrive information. Take for instance when trying to complete school work, he can not remember information he already knew and he becomes so frustrated he gives up. Not only that trying to recall information takes so much energy he is out of it for at least a couple of days. All we can do is keep looking and asking questions. Hope

Debra, My son is 14 and has POTS with hypermobility and migraines. One of the hardest things to me has been watching him stay in bed and do what I call ?vegetate.? I was always trying to be the cheerleader and pushing him to get up, move around, go walk, do schoolwork. Finally I asked one of his home bound teachers that he really liked and he had been with us a couple of years, how do I motivate him to do schoolwork? (I thought the teacher would have more experience with motivating people.) He looked me in the eyes and said ?This is not a motivation problem. He is highly motivated.? I like you, have listened to the doctors but finally came to realize my son cannot get up every day. My son did great drinking his fluids for two years but is now going through a period he is having trouble drinking enough. A couple of my son?s major problems are extreme fatigue and brain fog. We are ?trying? to home school this year to take the pressure off of him about school. (That was a major issue for us with me being the cheerleader. His doctor finally told me ?When he starts getting better, he will catch up quickly.? 0 I know it is very frustrating and I tried so hard to have him do everything his autonomic doctors told him. I finally realized he will when he feels like it. I still encouraged him and try to think of things he would love to do occasionally. For instance we used to go to the movies and eat dinner after the movie but that has become too much for him. This is one of the hardest things I deal with as a mom. But then I think if this is hard for me, it must be harder for him. He used to love being outside. He was hardly ever indoors. I hope things get better for you and your daughter. Are you working with the doctor to adjust her medications if need be? Is she trying to go to school? Good luck. It sounds like you are doing your best. POTS likes to test our patience. This forum has helped me immensely. I finally found people who are going through the same things that I am. They understand. I hope you find as much comfort from this forum that I have. Hope

My son has the sensory overload too. He is 14 with POTS and hyper-mobility. He has headaches everyday with migraines often. At first when he complained about lights, noise etc; I was thinking more along the line of migraines but then we started having issues going shopping, going to any store for like 15 - 20 minutes, going out to eat. After becoming over-stimulated, he is extremely cranky almost like two year old and becomes very angry at almost anything. We have learned to listen to his body. For instance if he is tired we do not even try going out. Since we have started being aware of how he is feeling we have not experienced as many episodes of him becoming over-stimulated. But one thing for sure it is not easy on anyone when they become over-stimulated because you never know what will trigger their outburst. Good luck figuring out how to make life easier on your daughter.

Yes you should notice a difference with stimulants immediately. Maybe she could try a different stimulant like Adderall, Concerta, and or Vyvanse. Different people react differently to each medication. My older son is ADHD and started a on Ritalin when he was younger and it worked great but then after a few years the doctor switch him to something that would last longer than 4 hours. The thing about Ritalin is that the when you take it, it starts working slowly and gets better like you are going uphill with a sudden drop when the medication effects wear off. My younger son has POTS and has not noticed an improvement taking stimulants either in paying attention or with the brain fog. His brain fog seems to be worse. The only thing my younger son noticed about most of the stimulants is he is even more wiped out after taking them. Some people with autonomic problems have good luck with stimulants maybe a different one would work better. Mack's mom suggested my son try turmeric. It is natural and you get this at at stores like GNC. Mack's mom said they use turmeric in CFS patients to help with energy and the help with brain fog is an added bonus. It helped her with energy and cognitive function liked brain fog. After thinking about it, I am nervous only because my son had a couple of really severe reactions to what we think have been spices. I am still weighing the options of trying it for him. Good luck finding something that helps your daughter this has been a big struggle for us. I hope you find something soon. Hope

Lenna, I found that Dyna Kids has a big article that lists a lot of symptoms to help deal with educators. I printed this article out every year and presented the article to my sons teachers. A lot of people have trouble understanding the illness because it is "invisible to the eye" and they look ok to most people. I even had one homebound teacher tell me "the perception is that he is lazy" - this was even with the articles. I hear colleges are more difficult to convenience. Good luck. The website link is http://www.dynakids.org/schools.jsp and again the article lists a lot of information to help with schools. Hope

Julie, Thanks again for the information. I am almost in tears to find there are other things to check to help him. I kept reading everything I could find but not finding answers until I found this site. I had the feeling there were other issues other than POTS. Since we have started back trying to do school assignments he has passed out twice in two weeks. He had not passed out since end of grade test last May. School does him in, even in small doses. I feel like PotsMom, my son even made the same comments to me "School is not worth it. You do not know how I feel." My son loved school and was in the top of his classes. Another reason why the school here cannot understand his medical problems. Last year he passed three end of grade test without any instruction or even opening class books the last 5 months of school. But just like PotsMom even trying to complete work in small doses does not work. He loved school and misses it. Also like PotsMom, he watches educational program and seems to learn from those but has huge problems with recall and memory. We live in NC. His cardiologist is at Duke but the last 3-4 appointments we had to cancel because he was too ill to go. Also I feel like he "too busy" with heart patient and patient that are critically ill to have time for us. I have waited 3 - 6 weeks for return phone calls and never received answers at times. I would like to find someone who we could work with who understands and has time to work through all of his problems. I am thankful the cardiologist was able to give us the original diagnoses and then later did the tilt table test for us. At the time we saw him, in fact the same day - we saw our regular Pediatric GI Specialist, Pediatric Neurologist, and Infectious Disease Physician - all of whom told me to "make him go to school" and we needed to see a psychologist to help us with "our problems." In fact a primary physician we were seeing was looking at me for Munchausen Disease. I am a single mom with a full time job and I would "want" to create all this problems - get real. I am very thankful for the cardiologist diagnosis but I would greatly appreciate any names of doctors you could provide for me to find more answers. Our primary doctor would be more than willing to have test ran, work with another doctor anything to help us manage my sons condition. Our doctor has been wonderful trying different medication, etc. I am calling this afternoon to see if I can find turmeric. How much do we start taking? Thanks again Julie for all your help and support. I can't imagine how hard it is for you to deal with your health issues and your son's health issues and have time to try to help all of us. Thank you so much. I would greatly appreciate any suggestions. Hope

I do not know about PotsMom but I do know my son has a terrible time trying to learn. I was hoping doing Homeschool would take some pressure off of him but after 25 - 30 minutes he will start shaking all over and getting very frustrated saying he had enough. That is very frustrating for both of us because he is very intelligent and I keep trying to help find a way he can learn without putting too much pressure on him. But hardly anyone understand why he can not go to school or at least do home school. My primary care physician has advised me to try not to worry too much about him learning now because when he gets better "he will catch up." I guess we all are very fortunate most POTS patients are very intelligent.

Sorry to take so long to reply. My son is on Topamax, Sertraline, Fexofenadine, Fludrocortisone, Prevacid, Melatonin, vitamin D, and calcium. We have tried Rozerem for his sleep. Makes him too groggy and sluggish. We have tried Adderall, Dextroamphetamine, Strattera and Ritalin for the brain fog and to give him energy but they made him feel worse except for the Strattera which did not help. The other three made him jittery and feel as if his heart was racing. After the medication wore off he would be exhausted - more so than normal. We tried Clondine and Midodrine. The Midodrine made him feel as if he was freezing, he stayed under two blankets and shook all day. His hands and feet felt ice cold. We also have tried several things for stomach cramps and upset stomach. He goes through periods if he tries to push himself of hours of upset stomach for several days. At one point it went on for months. His main problem are headaches and fatigue like most other people. In addition is the brain fog and not being able to access information. If we try to do school work, his head starts hurting and he feels wiped out. He becomes extremely frustrated when he knows he should remember something but can not access the information. When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea. Any suggestions would be appreciated. Hey Hope- I have a few thoughts. I re-read your initial post. One thing sticks out that isn't being addressed with his current med regimen: the itchy skin following a shower. That is a classic sign of excessive histamine release which causes autonomic (and a whole host of other) symptoms. Does he have any other skin issues? Weird rashes, hives, flushing, dermatographism (marks left after lightly scratching the skin)? I would encourage you to check out The Mastocytosis Society Website www.tmsforacure.org Click on:" What is Mastocytosis or Mast Cell-Related Disorder" Check out the host of symptoms, etc & see if you think that may help explain some of your son's issues. There is a subset of us (myself included) who experience autonomic dysfunction, a mast cell disorder & a connective tissue disorder.... If you think symptoms fit, adding an H-1 (antihistamine like zyrtec, claratin, allegra) and an H-2 (like zantac or ranitidine) may bring signifiant relief to all symptoms. Strangely, the doxepin (old-fashioned antidepressant) that Christy describes is another option in folks with suspected mast cell disorders to calm down histamine release. Taken at night, it also helps with sleep and increases the appetite. Atarax is another PM option to consider. Cyproheptadine (an antihistamine) does similar stuff as the other two. This was recommended by my son's ped at Johns Hopkins in a liquid form taken just before bed. It was too sedating for Mack, but so is zyrtec As far as a sleep study- GREAT IDEA. I agree with Reen- look for another doc that specializes in child sleep studies. I'm sure it will reveal a wealth of info. Getting the sleep issue resolved will help so much with daytime energy, etc. That being said hypersomnia & insomnia seem to be hallmarks for many of us One other thought: his stomach issues aren't really being directly addressed. Many with autonomic issues suffer with slowed motility and subsequent excessive acid. The acid issue (GERD) and "D" are also classic with mast cell disorders. My son finds great relief with Nexium, ranitidine, and a GI prokinetic taken twice a day- prevents the nausea & vomiting and helps him to eat. Last thought- turmeric. It's natural- Yay!- and brings many tremendous relief from the cognitive fog issues. I took it for several weeks and had MUCH better energy and cognition. It was as if a fog had lifted. Alas, I developed an allergy to it, Grrrrrr, and had to stop. It is being used with CFS patients for increased energy- the cognitive clarity is just a side bonus Really LAST thought , my son also has bradycardia, very slowed cognitive speed processing, and no energy. CONCERTA has been a wonder drug for him in a low dose, 27mg (he weighs 165.) I see that you've experimented with lots of stimulant meds. Maybe consider giving this one a try. Mack also tried a host of others before settling on this one. He swears by it & actually supplements with a thermos of coffee that he brings to school. He says it helps him think. You are not alone. So many here have children with similar issues. Keep posting and sharing. I've learned so much from other parents in the trenches. Hugs- Julei Julie, Thanks for all the great information. I will go to The Mastocytosis Society Website and check it out. Yes his cardiologist did mention a possible histamine problem but never addressed it or even recommended it be addressed. for time to time he had what we thought were allergic reactions to something - twice so bad we went to Dr and he had shots to alleviate his symptoms. One time we were out of town and it became so bad we had to call 911 and they meet us on the side of the road. His skin looked like he had been dipped in boiling oil, his lips were swollen and his ears were so swollen they were sticking way out. He had severe stomach cramps and nausea. They gave him two shots of epinephrine before we reached the hospital and the hospital kept him over night. I remember they kept asking me if we were sure he was having a allergic reaction to something and I kept telling I did not know for sure what the problem was. We could not figure it out. Since that time we have Epipins and he has not another reaction that bad since. If he feels like a reaction is starting he takes two benadryl tablets and that usually helps. He does take allergra/fexofenodine twice a day for allergies. As for his stomach - I did forget he takes Prevacid and that helps him but sometimes he mentions excessive acid. There are days when he feels so bad I can not get him to eat very much. Either nothing sounds good or he is too tired. I will try to go out tomorrow and find some turmeric. That sounds very promising. Brain fog is a huge problem. We tried school work again today with science after 25 - 30 minutes he was shaking all over and getting very frustrated saying he had enough. That is very frustrating for both of us because he is very intelligent and I keep trying to help find a way he can learn without putting too much pressure on him. But hardly anyone understand why he can not go to school or at least do home school. But by the time we start he becomes so washed out. Hopefully the turmeric will help. He weighs 145 pounds - how much turmeric do you take? I am going to talk to our primary care physician and see if we can schedule a sleep study. We found out about the bradycardia when we had the tilt table test done. His pulse dropped to 37 and then 40 -42. After having the halter test, the cardiologist said this was an additional problem and would account for him being so fatigued but could not recommend anything else except a stimulant for energy. He did mention a pace maker but did not think it would help. Thanks for the suggestions. I am so glad I found the Forum. It is so great to be able to chat with people that have the same problems because so many people health care providers included do not understand. Hope

Hey Hope- I have a few thoughts. I re-read your initial post. One thing sticks out that isn't being addressed with his current med regimen: the itchy skin following a shower. That is a classic sign of excessive histamine release which causes autonomic (and a whole host of other) symptoms. Does he have any other skin issues? Weird rashes, hives, flushing, dermatographism (marks left after lightly scratching the skin)? I would encourage you to check out The Mastocytosis Society Website www.tmsforacure.org Click on:" What is Mastocytosis or Mast Cell-Related Disorder" Check out the host of symptoms, etc & see if you think that may help explain some of your son's issues. There is a subset of us (myself included) who experience autonomic dysfunction, a mast cell disorder & a connective tissue disorder.... If you think symptoms fit, adding an H-1 (antihistamine like zyrtec, claratin, allegra) and an H-2 (like zantac or ranitidine) may bring signifiant relief to all symptoms. Strangely, the doxepin (old-fashioned antidepressant) that Christy describes is another option in folks with suspected mast cell disorders to calm down histamine release. Taken at night, it also helps with sleep and increases the appetite. Atarax is another PM option to consider. Cyproheptadine (an antihistamine) does similar stuff as the other two. This was recommended by my son's ped at Johns Hopkins in a liquid form taken just before bed. It was too sedating for Mack, but so is zyrtec As far as a sleep study- GREAT IDEA. I agree with Reen- look for another doc that specializes in child sleep studies. I'm sure it will reveal a wealth of info. Getting the sleep issue resolved will help so much with daytime energy, etc. That being said hypersomnia & insomnia seem to be hallmarks for many of us One other thought: his stomach issues aren't really being directly addressed. Many with autonomic issues suffer with slowed motility and subsequent excessive acid. The acid issue (GERD) and "D" are also classic with mast cell disorders. My son finds great relief with Nexium, ranitidine, and a GI prokinetic taken twice a day- prevents the nausea & vomiting and helps him to eat. Last thought- turmeric. It's natural- Yay!- and brings many tremendous relief from the cognitive fog issues. I took it for several weeks and had MUCH better energy and cognition. It was as if a fog had lifted. Alas, I developed an allergy to it, Grrrrrr, and had to stop. It is being used with CFS patients for increased energy- the cognitive clarity is just a side bonus Really LAST thought , my son also has bradycardia, very slowed cognitive speed processing, and no energy. CONCERTA has been a wonder drug for him in a low dose, 27mg (he weighs 165.) I see that you've experimented with lots of stimulant meds. Maybe consider giving this one a try. Mack also tried a host of others before settling on this one. He swears by it & actually supplements with a thermos of coffee that he brings to school. He says it helps him think. You are not alone. So many here have children with similar issues. Keep posting and sharing. I've learned so much from other parents in the trenches. Hugs- Julei

Sorry to take so long to reply. My son is on Topamax, Sertraline, Fexofenadine, Fludrocortisone, Prevacid, Melatonin, vitamin D, and calcium. We have tried Rozerem for his sleep. Makes him too groggy and sluggish. We have tried Adderall, Dextroamphetamine, Strattera and Ritalin for the brain fog and to give him energy but they made him feel worse except for the Strattera which did not help. The other three made him jittery and feel as if his heart was racing. After the medication wore off he would be exhausted - more so than normal. We tried Clondine and Midodrine. The Midodrine made him feel as if he was freezing, he stayed under two blankets and shook all day. His hands and feet felt ice cold. We also have tried several things for stomach cramps and upset stomach. He goes through periods if he tries to push himself of hours of upset stomach for several days. At one point it went on for months. His main problem are headaches and fatigue like most other people. In addition is the brain fog and not being able to access information. If we try to do school work, his head starts hurting and he feels wiped out. He becomes extremely frustrated when he knows he should remember something but can not access the information. When I asked the cardiologist about having a sleep study done - he commented that it is unheard of for children to have sleep apnea. Any suggestions would be appreciated.

My son tried several different stimulants including Ritalin, Adderall, and Dextroamphetamine but all of them made him feel worse. He had even less energy than when he doesn't take them or he is so jittery and his heart would race. I hope you find something to help your brain fog.

My son is 14 and has POTS. We first noticed problems when he was around 9 years old. He was first diagnosed with cyclic vomiting syndrome and then also IBS. It took several more years to obtain the diagnosis of POTS with hypermobility. My son has progressively gotten worse. 5th and 6th grade went to school until February. 7th grade went to school the first nine weeks and then was registered for the homebound school program. 8th grade went to school about one week before he was put on the homebound school program. Even being on the homebound program he was unable to complete any schoolwork after December due to memory loss and energy level. With his memory loss he has trouble accessing the information he has learned - brain fog. This year after several discussions we decided to home school. Hopefully less stress for everyone. Even though he always loved school and is very bright, he keeps saying he is so tired and cannot think. When he tries to complete schoolwork or even sometimes read, the task seem to deplete even more energy. I am hopeful some of you have experience with these symptoms. He has trouble sleeping and even when he sleeps ok he says he only has about an hour of a little energy. I have trouble getting him to take a shower because it makes his symptoms worse and his skin itches so bad. He very seldom goes out. He always says he doesn't feel like it. When we are able to go out he is even worse for a few days sometimes even a week even if we just go to movies. A lot of POTS doctors say stay active do not stay in bed but how do you accomplish this if they constantly do not feel like moving around and if I push he starts falling or passing out. Does anyone have any experience with how to best handles these issues? My son also has horrible headaches almost daily, stomach issues sometimes in the bathroom for 4-6 hours off and on during the day, extreme fatigue, problems with low pulse at times low being 40ish and a host of other symptoms. I am trying to stay optimistic but it is getting harder and we definitely do not want to deal with social services and school issues. Sorry to write so much but I am hoping someone has experience with these issues and can offer suggestions. Hope for all.