jpjd59

SeattleRain:

I notice that the cardiologist had you take many tests. Did they perform a tilt table test to confirm POTS?

Jangle:

I don't know which Mayo you are trying to get in to but I know when we took our daughter to the Mayo I was told that if you go to the Arizona Mayo between May and September it is easier to get in to. Apparently the Mayo in Minnesota is easier to get in to during the winter months.

We took our daughter to the Mayo in Arizona last December and it was approx. a 4 month wait at that time.

FYI: we found that the Mayo had great testing facilities but you still need to find a doctor back home to help with follow up unless you plan on travelling back and forth frequently to the Mayo.

Pam

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.

ChristyD:

Hope your son's appointment with Dr Afrin goes well today!!!

Pam

Wow! This doctor sounds great!!!! So nice to have a doctor that doesn't dismiss you just because they are not sure how to treat you.

Yes! My daughter experiences trouble breathing on a daily basis. I'm so tired of the first thing every doctor mentions is anxiety. True, when she can't breathe she gets anxious but that is not the cause of it. She can be having a perfectly normal conversation and have it start. So far, no doctor has been able to figure it out. She has other symptoms of a mast cell issue (although no tests prove this) so we are thinking this might have something to do with it.

I am so sorry to hear that you are experiencing this.

My daughter's very first symptom was waking up with extreme vertigo. Finally diagnosed with POTS a few months later. Since the initial bout of vertigo, she gets motion sickness any time when riding in a car (she never had any kind of motion sickness before).

Pam

My daughter's blood pressure was normal during her TTT and she didn't pass out, but her heart rate did go up 40 points upon standing. Her cardiologist said this was a positive TTT for POTS. You might want to make an appointment with a specialist who deals specifically with POTS to see what they say.

^{First of all let me say that I am so sorry that you are going through this. I have a 23 year old daughter who is in your same situation. She was living on her own and going to school. She became sick with POTS and had to move home and take a leave of absence from school.}

^{Since I am speaking from the caregiver's perspective, I can tell you that you are not a burden!!!! As a mother it is so hard to see your child go through something like this and we would do anything possible to make you feel better or make your life easier in any way. As caregivers we feel so helpless because there is really very little we can do.}

^{I hope you start feeling better soon.}

^Pam

I'm so sorry to hear that you are going through this.

I wouldn't stress over the tilt table test. My daughter had the TTT 15 months ago and she said it wasn't really that bad. (We were sure she had POTS but we also had the fear that it wouldn't show anything and we would be back at square one). Well, it did show that she has POTS.

She was a vibrant, active 23 year old one day and the next day she was having chest pains, vertigo, etc. (this happened 2 weeks after a viral illness so the doctors suspect that is what triggered it).

I think there is definitely something to this. Not only B12 but others as well (B1, Vitamin D, etc.).

Just wondering if any of you "potsies" with mast cell issues have found out that they have a kit D816V gene mutation?

Pam

My daughter had some testing done that showed a high serum copper level and a low B1 serum level. We are going to a specialist to see what this means (looking up symptoms for a B1 deficiency sure could explain a lot of her worst symptoms).

Pam

Michelle:

Congratulations! I'm glad you were able to enjoy your wedding day with minimal symptoms.

Pam

BMB = bone marrow biopsy

Christine:

Welcome! I have found tremendous support and information from this forum. I hope you will too. The best information is to follow your instincts. If you feel a doctor is not supportive then keep searching until you find one that is.

I hope you feel better soon.

Pam

My daughter has this problem periodically when she is having a bad "flare". She will get a headache on one side of her head and she said that it hurts to touch or even move a piece of her hair. We have no idea what causes this. I guess it is just one of the many "mystery symptoms" that have yet to be explained.

I did not start this thread to state that people should not get vaccines. That is just what the "syndrome" focuses on - however it also stated that it can be caused by trauma to the body or a virus (which was my daughter's case).

Pam

Thanks for the info. I also would be curious to see if the groggy feeling goes away after being on it for awhile. I read somewhere that LDN is supposed to help reset the immune system. Did the doctor mention anything like that to you?

Issie:

I agree that sometimes we have to have people/doctors that think "out of the box". We've exhausted pretty much every other avenue that we have tried so at this point we NEED a doctor who will think"out of the box". We're so tired of having doctors say to come back every month to see them (this process has been going on for 14 months and my daughter is just getting worse).

I really feel frustrated and helpless at this point!!!

Pam

ChristyD:

Yes - that's exactly what caught my attention (since my daughter has been diagnosed with POTS and they think some kind of mast cell issue is going on although tryptase,etc. have all come back normal).

I just happened to run across the article in my many hours of research on the computer. I was trying to find out what could possibly be going on with my daughter that the doctors could be missing. I have taken the article to two of my daughter's doctors and both have never heard of this syndrome.

All of the symptoms seem to fit what my daughter is experiencing yet the medical community seems to be unaware of this syndrome (if it truly is a real syndrome).

I would love to know if anyone knows anything about it.

Pam

I am curious as to anyone has heard of this syndrome (apparently POTS is one of the many symptoms). I can't find much informaion about it on the internet.

It suggests taking low dose naltrexone. Has anyone tried this drug and, if so, did it help?

Pam

We just had my daughter's serum copper level checked again and it was even more elevated than the previous test. When I was researching what this could be I came across something called "Phillips-Offit Wakefield Syndrome". Has anyone ever heard of this? (I am not sure if this is even a valid syndrome since I can't find much info about it). It says that POTS is one of the features of this syndrome along with many other symptoms that my daughter has.

Misstraci:

I know the feeling! We keep hoping that at least one test will come back "abnormal" so the doctors will take it seriously. We think that my daughter is suffering from a mast cell disorder. She also had a normal tryptase test but people have said that it can still be a mast cell disorder, evern with a normal tryptase. So we will keep pushing until we find an answer.

Wishing you all the best,

Pam

Christy:

My daughter tried Gastrocrom because they suspect she has a mast cell issue. Unfortunately, she was unable to tolerate it (she threw it up within a few hours of taking it). And she took 1/2 of the dose that the doctor wanted her to because she has been so sensitive to meds (maybe she should have started with even less than that). I have heard that it helps a lot of people though. Hopefully your son will be one of the ones that it helps!!!

I know you have been a "warrior mom" trying to find help for your son. He is truly lucky to have such a great mom!!!

Pam

Just curious - my daughter just had a blood test result come back with a slightly elevated copper level. We have been thinking that along with POTS that she has a mast cell issue (although all of those tests, tryptase, histamine, etc. have come back normal).

Along with POTS symptoms, she has also been experiencing hives, skin burning and itching, difficulty breathing, and the feeling that her throat is closing up.

I'm just wondering if the elevated copper level could have something to do with her symptoms.