For everyone who want to know what meds

[kelly1258]

O.k. Just got back.  Your son sounds similar to my daughter.  A few years ago she stare with severe nausea stomach aches and headaches.  For about 1 year she had every test known to man with no relief.  Then she started getting severe body pains .  Then she started feeling week along with everything.  Everyday we would try to get her to school and she ended up in nurses office. She was unable to go to school. Finally one day she was so bad we took her pulse and it was sky high and blood pressure all over the place.  Ended up in hospital for a while than finally a cardiologist tested her with Tilt table test. She was passed out within 3 minutes.From there she was out of school for 10 months.  She was like partially disabled from everything.  Even on all the meds nothing changed.  We went to toledo ohio to the world famous Dr Grubb.  Well Myself and my husband who is a Dr. researched and researched.  I came across an article saying high doses of antidepressents help the nervous system.  Well Dr. Grubb had her on one but a low dosage.  So we put her at a high adult level with a booster(abilify).  Within 2 days of going from 90 to 120mg and abilify she has been symptom free for 10 months.  She went from barely functioning to totally normal.  No symptoms gastro or other for 10 months.  It is amazing.  It has been great.  Then 4 weeks ago my 12 year old started with severe headaches, nausea and stomach aches.  Which is exactly how my older one started.  We already have started her on the meds.  So here is exactly what my older daughter is on.  

AM- Fludrocortisone .1 mg
       Midodrine  5mg
PM  Abilify 5 mg
       Cymbalta 120 mg

[kelly1258]

Yea we actually went to see him last year with my older daughter,  He is a really good doctor,  Then my husband called him the other day because my younger daughter developed,  He never really labeled the older daughter, but since the little one developed   I suppose more than likely that is the form my girls have which seems to respond the best to antidepressants.

[Lynn63]

I am sorry to hear you guys/loved ones are going through this.  The Hyperadrenergic form of POTS is usually genetic.  Dr. Grubb does have some amazing articles and he seems to know the most about this.  He was to be doing further research as they believe that this form of POTS also has some 'subtypes' itself.  i haven't heard lately but I know his wife had brain cancer so his work schedule had obviously been slowing down.

This is the link to a good article by Dr. Grubb which lists a table of things related to the different forms of POTS.

http://circ.ahajournals.org/cgi/content/full/117/21/2814#TBL1189801

Best of luck to you and please feel free to contact me with any questions.  My daughter has been put on lots of different meds, etc.  What seemed to help her the most was Birth Control Pills and Cymbalta.

Lynn:)

[kelly1258]

My daughter has POTs, dyautonomia.  I think ours is genetic because my younger daughter just started with it.  For us we never had a sub-division label.  The article is by Dr. Grubb.  I'm sure if you research it you can find it.  I left it at the cardio's office.  When I get it back I can let you know.

[supineallthetime]

That is very encouraging.  May I ask what specific autonomic conditions were identified/diagnosed in those patients who respond well to this?  Was it POTS?  Any particular sub-set like "hyperadrenergic", "low-flow/high-flow", post-viral???

[kelly1258]

That is exactly what is going on with my younger daughter.  She is vomiting, nausea and headaches.  We are putting her on Hospital Homebound.  We are starting her on all the meds listed above.  Just Slt and fluids did not work for my older daughter.  If you are still sick you eed to try other things.  That is what we did.  It took a long time but then boom, she was well.

[siembe]

Wow thats amazing. My doctor told me to increase my salt and fluid intake but its been almost a month to no difference. I've lost my interest in school, sport and my social life almost altogether. My symptoms aren't as severe however i used to go to school after vomiting all night and after becoming sick i now sometimes miss 3-4 days of school. I wish you all the best and hope from this story that MY younger sister won't be affected.

[kelly1258]

Good Luck with your son.  There is hope.  I never thought after 2 years we would have relief.  I can't believe we are starting over with my younger daughter also.

[CHRISTYDRAKE]

I am going to bring this info with us to Cleveland.  My son has already tried a couple of antidepressants, but I don't think they were high doses.  He also didn't have it with abilify.  This is very encouraging.

Thanks for sharing this info, and good luck with your younger daughter.  It is a terrible thing to watch your children go through.  Hopefully we can give my son back somewhat of a social life and get him back to school.