Christy_D

My son did it daily for 5 consecutive days when he did it in April and didn't get relief until the third day. Maybe try a daily routine for several days in a row?

My son had extremely bad chest pains, over a year ago, and we took him to the Urgent Care. The doctor gave him a shot of prednisone and it stopped within 1/2 hour.

My son had his done at home. They sent a nurse to get it started and she checked in on day 3 to make sure everything was fine. At the end of the 5th bag on day 5, I took out the line as she had instructed me how to do and he was done. He did not get relief until the third bag which was day 3, so he did not get immediate relief.

Wow, Issie. Very interesting stuff. My son has had many tick bites in the past and mosquitos for that matter. Definitely keep us all posted. Christy

Wow, my son has been drinking it for years. During soccer games or after hot summer baseball games, Gatorade was the drink of choice. No more!

Like POTS it can wax and wane, everyone is different, and some people seem to get much better. The list of medications to try is very lengthy. Some people find the right medication and feel better, but Dr Afrin said there are some that don't find relief with medication. So far, my son hasn't found any relief but we have a long way to go with trial and error on meds. It is just so time consuming, weaning up ..trying a med for 30 days..then weaning back down before going on to the next med.

I believe it was brought up in a previous post some months back. One of the other members with MCAS I think originally posted the link. It is a written lecture, not a video, but it is easy pretty to get through. It looks like a powerpoint presentation. The lecture starts on about page 5.

Bebe, Dr Afrin told us my sons POTS was a symptom of his MCAS. So the MCAS is the primary illness and the POTS is secondary. MCAS isn't all about allergies. The mast cells behave badly and 'dump' their chemicals..ie histamine,PGD2, heparin.etc..over 200 receptors that can't all be tested at this point. His Heparin levels were 8.5 times to high and PGD2 2.5 times to high. We haven't found any known triggers and some people never do. His histamine level was on the very high end of normal, but he was on doxepin at the time of testing so that may have skued the test. Dr Afrin has a really good lecture on the internet with slides that is very easy to follow. http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdf Christy

So, if it is a young woman thing...What is it that my 17 year old son has? He also has also been told to drink more water, eat more salt and exercise. Kinda of hard when you are as nauseated as he is. Sorry your doctor appointment was a disappointment.

Ashley, My son has MCAS and is a patient of Dr Afrins. You can try Zantac/Zyrtec or Claritan/Pepcid. The Claritan is 10 mg twice a day and the Pepcid is 40 mg twice a day. For Zyrtec, it is also 10 mg twice a day and I believe the Zantac is 150 mg twice a day. So, from what I can tell, it is a double dose of the H1 and a quadruple dose of H2. Christy

My son, before being diagnosed, was itchy frequently. Once he started on Doxepin in 2009, he rarely gets itchy any more. But, that could be from his mast cell issue..not sure. Christy

Welcome to the forum Jen. My son(17) is in the same boat. His sleep cycle has been messed up on and off for the last couple of years. He did a sleep study and they found he has restless leg syndrome. No meds really help him either. Even on a very high dose of doxepin (175 mg-as one doctor said..enough to take down an elephant) doesn't knock him out. He is still on 100 mg doxepin, for his POTS and MCAS issues. He goes from no sleep for a period of time to sleeping constantly. It is great that at least you live in Cleveland where some of the good specialists are located. We traveled to Cleveland 5 times from Oct 2009 to August 2010 before finding a local doctor. This is a great forum and the people on here are so helpful. Christy

My son's started with abdominal pain/cramping. First diagnosis was abdominal migraine. He was in the 5th grade when symptoms started, got a correct diagnosis of POTS at the end of 8th grade. He is now a senior in high school.

My son was prescribed it for nausea, unfortunately it wasn't helpful. It also gave him an amnesia effect, he didn't remember things he did right after taking it. I'm glad you are getting some relief with it.

We can relate. Even though nausea is my son's worst symptom, we don't have a GI doctor. They ran out of ideas, so the neurologist and hematologist are working on it. Don't let it get you down, my son just figures it is one less appointment he has to go to.

Welcome to the forum. My 17 year old son, a senior, also has POTS and attends cyber school. Migraines was one of his first symptoms in the 7th grade but after taking Topamax they stopped. He had to stop taking topamax from all the side effects, but thank goodness the migraines didn't start back up. Fludrocortisone also greatly helped his dizziness, we just can't find anything for the nausea. Christy

My son used to take florinef with other meds. He took it for 2.5 years and it kept him from being dizzy, but his other symptoms were still there. He is rarely dizzy now so they took him off the florinef. So, it did work very well to keep the dizziness at bay, for him. Christy

A couple of doctors told us my son had anxiety, didn't want to attend school or was depressed. I didn't buy into it, he was a mellow kid with lots and lots of friends. One doctor spoke to him for 10 minutes and diagnosed him with depression since he was no longer playing soccer or baseball. I tried to explain that he could no longer play due to the illness but the doctor wouldn't listen. It was wonderful when we saw Dr Gisela Chelimsky(in Cleveland at the time) and the first words out of her mouth were " this is not in your head" and gave him a hug. She has been my favorite doctor of all, out of all the doctors who we have seen. She said she has to tell all her patients that because most of them have been diagnosed with mental disorders before getting a correct diagnosis.

Nausea keep my son bedridden. If we could get that to go away he could also return to school.

While my son is the only one diagnosed with POTS and MCAS, my daughter had a TTT a week ago(still waiting to hear results). I had minor symptoms from teens through very early 20's and my mother had a lot of symptoms but no diagnosis since we were both very functional. Migraines and hyper mobility run in the family. Also, my mother didn't sweat and my son has issues with that as well. If my son wasn't so severe we probably still wouldn't know that all the 'quirks' were related.

My son's symptoms started with GI issues. He would have occassional abdominal pain, stomach aches and vomiting(started in 5th grade). The GI dr couldn't find anything wrong. The symptoms became more frequent and new symptoms kept starting. Many symptoms have come and gone, but the GI symptoms have always been a constant. We haven't found anything for the nausea yet...zofran, ativan, every over the counter med, supplements, etc... the list is very long. If he could get rid of the nausea he could be a functioning person who was able to leave the house.

In the past four years, we have taken my son to the ER twice. The first time his temperature was 93 degrees and he was so nauseated that if he just turned his head he would throw up. They kept him overnight to stablize his temp and gave him an IV with Ativan that took the edge off the nausea. Now when his temperature drops, we just wrap him in blankets since that's all they could do for him. The second trip was when we were on vacation. He was having severe chest pain that was radiating into his back. It was the worst pain he had ever experienced in his life. He had gotten sunburned and stung by a jelly fish a couple of days before the episode. The doctor said it was probably to much for his system to handle. They gave him a shot of prednisone and it all calmed down within 30 minutes. So the two trips we have made were both beneficial. They didn't think we were wasting their time.

Emailing doctors has been my best way to find the ones willing to help my son. I email them with a brief history and ask if they are willing to help. Two doctors, via email, referred me to other doctors that could help. All the doctors currently treating my son have been found via email. I googled simple terms like 'hematologists St Louis', or neurologists etc.. It provided me with a long list that I could then google those doctors and read about them. You can usually find their email address somewhere on line as well. The doctor we saw at the Mayo Clinic had an article he had written about POTS and his email address was on it, so I emailed him. They have all responded back to me fairly quickly. I got a lot of doctors turning me down and some willing to ask their colleagues if they could help us.

Naomi, the same happened for my son. When the medical doctors kept telling us it was anxiety or depression we saw a psychologist who researched everything my son was saying. She told us we didn't need her either, that it was a physical issue and to see a cardiologist. She thought it was some type of O.I.

MCAS is mast cell activation syndrome. The mast cells are 'behaving badly'. My son's heparin and PGD2 levels are too high and his histamine is on the high end of normal(which would probably have shone to be higher if not on doxepin). The mast cell can dump or degranulate too quickly. Dr Afrin, a mast cell specialist, told me POTS is a symptoms of MCAS. The symptom that led me to look into MCAS was itching. My son would get itchy when he was too hot or warm. When I would scratch his back, it left red welts. Many of they symptoms from MCAS and POTS overlap. I am horrible at explaining this, maybe Issie can chime in. We spent 3 years trying to treat POTS before we got the MCAS diagnosis. It could take awhile to find the right medication or mix of medications to help, the list is very lengthy. This is not the best article, but it does list the symptoms: http://www.ehow.com/...n-syndrome.html