db2504

The Hughes Syndrome

Has anyone been diagnosed with lupus anticoagulant as a cause of their POTS

Thank you very much for your replies and concern.  My daughter does not seem to be struggling with the pollen. She actually hasnt tried Motrin, so we will give it a try. She doesnt really tolerate meds very well which is making it very hard to get any relief. She also has a swollen lymph node in her armpit. She will be getting an ultrasound for this, but we are thinking it could be part of the POTS. 

Hi everyone,  Hope you are feeling okay. I was wondering is anyone having a really hard time with their symptoms right now?  I was wondering if it could be the change in seasons. My daughter is really suffering especially with body pain and very frequent adrenaline rushes. Does anyone have severe muscle pain and if so what do you take to help with the pain. Tylenol is not cutting it. 

Thank you all for your replies. Is there anything medicine way that helps and does it accompany adrenaline rushes. 

Is there anyone that experiences nightly adrenaline rushes and swelling and redness of their extremities?   Computer work and thinking seem to make it worse. Help!!!  Any suggestions would be appreciated. 

My daughter gets the same way. She is very irritable and angry. She can feel the anger starting but can't stop the feeling.  It makes her really upset and sad because she used to be a very sweet person.  

We r seeing my daughter's neurologist on Wednesday and wondering what type of doctor is needed to diagnose EDS? For anyone who has it, is there a lot of pain associated with the hypermobility type? Do you have skin elasticity and scarring. My daughter does have the hypermobility issues but not sure about the elasticity. How were you all diagnosed?

Thank you for your replys. The reason I mentioned this was because I just found out there were many homes in our development that have water/mold problems and mine is one of them. I thiught i had read something about a correlation with POTS and mold. I will mention this to my daughters doctor bc as of yet we have not found the cause of my daughters POTS.

Hi all, i hope the holiday sesson finds everyone happy and able to bear their pain to celebrate with family and friends. I was wondering if there is anyone or anything documented that has found mold to be a cause or exacerbation of symptoms of POTS?

Sorry to hear ur struggling. Hang in there. My daughter is having the same problems. We never know from day to day how good or bad she is going to feel. It is a very disheartening illness and one I would not wish on my worst enemy. Try to find solace in the things that make you happy in life. Try to push yourself to stay connected to family and friends. Now is when you need them the most. Sending prayers that tomorrow is a better day.

Thank you for the info. I hope your daughters are feeling ok. Thank goodness they have a mom who takes care of them and is an advocate for their health care. God bless you all

Can you tell me how your EDS was diagnosed and by what kind of doctor? Please explain your symptoms.

I live near Philadelphia and could not find an autonomic specialist for my daughter. We drive to Maryland. There is a Dr. Rudnick in Flemington, NJ. I heard he is very good and we are waiting to see him in December for a second opinion. Good luck. I hope this info helps.

Thank you all for responding. We feel they are adrenaline rushes just minus the sweating. I asked her neurologist to check her catecholamines but he said he couldnt bc no one does it correctly.

My daughter thought she was having adrenaline rushes every night and occassionally during the day, but according to her neurologist they may not be. She describes them as a feeling of chills and then the rush starts. She gets very uncomfortable, her heart races, muscle pain, irritable, feeling like she has to keep moving, and like something is taking over her body. She fors not sweat and for this reason her doctor feels it is not an adrenaline rush. He has no idea what she is experiencing. Can anyone relate to what I am describing?

I was wondering if anyone has had any issues with having dental procedures, such as; fillings, root canal, or even cleanings. My daughter is worried about worsening of her symptoms from any of the mentioned procedures. Thank you.

Thank you everyone for your info and kind responses. This forum has been the best thing for me and my daughter. I am so happy I found it and sooo many nice people. Have a feel good day!!!

My daughterhas problems with irritability and adrenaline surges when trying to rread or computer work.

Cortisol was 23.1. ANA 1:160

My daughter's results of her bloodwork came back with high am cortisol and a positive speckled ANA. Anyone have any info on these results?

My dsughter was only having minor symptoms prior to her ttt, but has been steadily going downhill since the test in january. She did faint within a minute but according to many doctors the ttt should not of caused her body to crash. Hope u feel better soon.

My daughter was recently diagnosed with POTS after what wr think she msy have been suffering with for a long time. When she was five she had ureter surgery bc hers were not formed. When she began to play soccer at seven she had exercise intolerance and was diagnosed with asthma. The inhaler never really worked and she would complain of feeling like gumby. The prdiatrician said she was nervous and she was fine. Then she began to have memory and lesrning problems so they said she had ADD. She was prescribed adderall and continued to have issues with memory. Then stomach issues surfaced again being blamed on nerves. Jump ahead to college and shes diagnosed with SVT. Last November 2014 she began to feel weak and dizzy while walking in the mall. She goes to a catdiologist and he does a ttt. She faints within 1 minute and has been in a crash ever since.

Hi issie. Just wondering what is the tumeric. Magnesium. And olive leaf used for

Has anyone taken topamax and had chest pain and racing hesrt from thid medicine?