Christy_D

At one point my son was taking 6 per day (per doctors order) but he is now down to 2 per day.

Just an FYI= if a doctor prescribes you EMEND for your nausea, prepare for your insurance company to deny it. We were given a prescription for Emend from the mast cell doctor to try for the nausea. The doctor said it works differently than the other anti nausea meds. The cost was $4600 for 60 pills(30 day supply). CRAZY! Needless to say, the insurance company said NO.

I wonder what the prognosis is when you throw MCAS in with the POTS. My son only continues to get worse year after year, now 17. We were hopeful he would outgrow the POTS, but now that we have added MCAS in I'm not sure this is going to just go away. His POTS was not post viral, it was just a slow progression of symptoms and severity.

My son's main symptom is nausea. The doctors have told me it is one of the hardest symptoms to treat because it can be caused by many things. It can be neurological or gastrointestinal. We are still on our search for something to alleviate or reduce his nausea. My son eats through it though. He will eat laying down,etc.. I know he doesn't get enough fluids as well. He did the IV Saline and it helped a little, but was a major pain to try to maintain as a treatment.

Issie, Can you take a lower dose that you tolerated? Perhaps a little or some is better than none. Christy

I was able to get my son in quickly by emailing a doctor directly and letting him know what issues he was having and how long it had been going on. The doctor gave me his schedulers phone number and told her to get us in as quickly as possible. We had a two month wait by doing that. Just food for thought. Christy

The appointment went well this morning. We are stopping the gastrocrom since it didn't help. He gave us 4 new prescriptions to try one at a time. The first two are focusing on the nausea, Emend and Marinol, if Emend doesn't help. He also gave us a script for Singulair because it seems to help with MCAS. If that doesn't help we will move on to ketotifen(sp?). It is a mast cell stablizer that we will have to get at a compounding pharmacy. It doesn't have FDA approval in US. We were early to our appt. and got taken right away and Dr Afrin was able to spend more time with us. I'll keep you all posted on the outcome of each medication. Christy

Arrgh...I typed a post and it disappeared before I posted it. My son takes 10 mg claritan and 40 mg pepcid, both two times per day. Neither seem to be helping or hurting. He also takes doxepin which antihistamine in it. He has also been on full dose of gastrocrom for a month now and no help there either. We see Dr Afrin in the morning and I'm sure some of this may change.

Post messed up. see next post.

We have been told to give my son 4 to 6 thermotabs per day. This was recommended by his first POTS doctor in Cleveland and again by his current local POTS doc. They are pretty inexpensive.

Tigerbomb, The doctors we have seen that are knowledgeable about POTS and MCAS were found on the internet and this forum. We have ended up having to travel great distances to see some of these doctors, but after the horrible treatment my son got from doctors who weren't in the know it is well worth it. I didn't even know there was a local doctor for us until someone on this forum mentioned they were seeing a doctor in St Louis(which is where we live). So this is a very informative forum. We have traveled to Cleveland, the Mayo in Minnesota for POTS and Charleston, SC for the MCAS. fyi-There is a list of doctors on this website. Christy

My son's bp also goes up along with the heart rate. He has also never fainted. It sounds like your ttt proved POTS because of the jump in the heart rate. I would find someone more well versed in dysautonomia.

Hi Tigerbomb, My son has experienced most of your symptoms at one time or another. Like Ophelialit mentioned, people often start with whatever doctor their symptoms are at the time. We started with a GI, eventually got the correct diagnosis from a cardiologist but have been treated by a neurologist. I just make sure the doctor has knowledge of dysautonomia or else it is a very frustrating appointment. We are currently also seeing a hematologist since my son has also now been diagnosed with MCAS to go along with his POTS. My son has never fainted either. Christy

My son took it for 5 days as a migraine preventative when he was in the 7th grade. He was an emotional wreck on it. He was crying before school on the fifth day(and he is not a crier) and was crying over something petty after school. The doctor told us to stop it immediately. He has not had any problems with any other medication, but nortriptyline made him so emotional. At one point, once his migraines stopped, they thought he might still be having 'silent' migraines (no pain but all the side effects..nausea,etc.). They haven't given up entirely on that diagnosis, but no medications have helped.

No, no change yet. We go back to see Dr Afrin in 2 weeks. I'm guessing there will be yet another medicine change. Dr Afrin said it could be a long process and there is a long list of medications to try. Patience is definitely required.

I did not have to pay the fee when I told the doctors staff that I needed a copy of my son's records to give to another doctor. Perhaps they will waive it if you explain they are not for you personally. Once I get the copies, I always make a copy for myself and keep them in an organized 3 ring binder. This way, whenever we see a new doctor I already have all the records and just have to make a copy. I also keep them up to date. I get the doctors notes from every appointment so the binder is current. I also get MRI's on CD's and all test results. It's easier to get them as we go along instead of having to go backwards.

I can relate. My son played select soccer year round and select baseball in the spring and fall. It was a juggling act to make it to soccer practice and a baseball game in the same night. He was a very popular kid with tons of friends. That all came to a stop in the middle of his eighth grade year. At one point, I wished we could slow down and maybe take a summer off. So, be careful what you wish for. We not only slowed down, we came to a complete halt.

Kellysavedbygrace, The great thing about this forum is the wealth of information. If it wasn't for another member(MacksMom- Julie) on here encouraging me to have my son tested for MCAS, I don't think I would have gone that route. I bring some of this information, treatment options,etc.. to my son's doctors and have used some (IV Saline) that our doctor doesn't usually do. This is a great forum, even though some of it completely goes right over my head. Christy

Danielle, Dr Afrin is in Charleston,SC at MUSC. Christy

Issie, Doxepin does make him feel somewhat better. When he was on a very high dose --175mg -- he had a great six weeks(2 years ago) and then it stopped. Right when he started taking it some of his symptoms stopped, ie..licorice legs, itching, feeling hot(wanting to stand in the snow in shorts),etc.. We have weened him off twice and both times he got even worse(even when we didn't think it could get any worse). So, even though he feels horrible, he feels even worse off the doxepin. Thanks for the info though. Christy

My son was told by 2 different doctors that he didn't have a mast cell issue. The tryptase test and a 24 hour urine histamine test. The urine was not refrigerated so that blows that test. We went to see Dr Afrin in SC and he did more extensive tests, looking at heparin and PGD2 levels, as well as histamine. The urine needed to be kept cold from start to finish to be tested properly. So, yes, your tests can come back fine and you still have MCAS. Dr Afrin also said, even if the tests are done properly, and the results come back negative, you still might have a mast cell issue. It is very complicated. Is there any way you can see a mast cell specialist? If not, Dr Afrin was willing to instruct our local doctor on how to have the tests done and which tests to do. We opted to see him directly.

My son has also been told he is complicated(time and time again). So far nothing has helped my son. He is on H1 and H2 blockers, Gastrocrom, and doxepin. He is still feeling very lousy. He didn't feel any better when he started the anti-histamines, but maybe because he is already on a high dose of doxepin(100mg) and that has antihistamine in it. We may have to up his dose of that. His histamine level was 8, the high end of the scale when he was tested and that was with the doxepin in his system for 3 years now. Dr Afrin said it may take awhile to find the right medication, so we are trying to be patient.

My son was diagnosed with gastropareisis in 2009. He was prescribed erythromycin(sp?). I've read others on here that also took that for it. Some said the liquid form worked better for them. That might be something else you might want to check into. He is also severely constipated and is supposed to take a capful of Miralax daily to keep him regular. He doesn't take it as he is supposed to because it can make him cramp. Christy

On our first trip to Cleveland, where my son had his initial testing done, they would not do the TTT because he was still taking his florinef. We hadn't been told to stop taking medications. So we returned two weeks later to have the testing done. He had been on the florinef for 4 or 5 months at that time. He had no side effects stopping it for the 4 or 5 fives before the test and his dosage at that time was .2mg. POTS was confirmed with this test. Last year we were at the Mayo and they didn't care that he was still on his medications and his TTT test results were that he didn't have POTS. The doctor said he didn't have POTS, but was POTSY based on his symptoms(whatever that means). Needless to say, his local neurolgist did a poor man's ttt after that and POTS was still present. So, 1. everyday is different and 2. I believe the florinef can skew the test.

Welcome and sorry you're having such problems. They had my son stop taking fludrocortisone/florinef for 3 or 4 days before his TTT. Did they tell you to stop taking medications prior to testing? Your list of symptoms looks like all the symptoms my son has gone through, nausea still being his worst and daily. This is a very good site to get info and feedback from. Christy