jpjd59

This happened to my daughter about a month ago when she was getting a saline infusion. She had a saline infusion the week before and it went fine. This time they didn't even get a chance to get the saline going in. Just the needle going in caused this kind of reaction. The doctor had no clue why.

Hi jpjd, do you know what causes this to happen? I haven't run across it in any of my POTS research so far Lei: In my daughter's case we believe it is an autoimmune issue. Her POTS symptoms started after a viral illness. Since then she has also been diagnosed with CFS;ME so we are now dealing with an infectious disease specialist who is trying her on an anti-viral med to see if he can get the virus that he believes is causing the issue to be suppressed so that her immune system can take over. Hopefully we will see improvement within 3-6 months! Pam

My daughter used to have a thick head of hair but as soon as she developed the POTS symptoms her hair started falling out like crazy! I know it is not the worst symptom but still it's an upsetting one.

My daughter has a lot of different strange sensations within her head and neck area but not the sensation that you are referring to. Her symptoms are mostly pain, pressure (feels like her brain is swelling) and "electrical shcck" sensations. We have no idea what is causing this. Sorry I'm not much help!

Boymommy3: My daughter gets the same kind of skin burning sensation and electrical shock sensation. I don't know what causes it. The skin burning sensation she has had pretty much since she developed POTS. The electrical shock sensation has been a new development over the last 6 months. Sorry I don't have an answer for you (I wish I did!!!!) Pam

The best advice that I can give you is to get records from EVERY doctor that you see. Even if you think you are only going to see the doctor one time. Every doctor has their own system of getting records. Most doctors will give you a copy of your blood tests, etc. at your appointment if you ask them but they usually will not give you their notes that they put in your medical file. You usually have to request those from the clinic/hospital that you saw the doctor at. Good luck! Pam

Jen: Don' feel ashamed about asking for a handicap placard. We asked our daughter's doctor for one and he was very supportive about it.

Children are very adaptable. To your daughter, it is normal for mom to work and dad to stay home. Now days, it is not uncommon for there to be parents with different work schedules or different roles than the "norm".

My daughter's symptoms started 2 weeks after a viral illness. The doctors say that the virus (1) damaged her immune system and/or (2) is still smoldering somewhere in her body.

If you are looking for a doctor in the Bay Area who specializes in POTS I know that Stanford Hospital has a neurologist (his name is Safwan Jaradeh) that has POTS as his speciality. We have been to see him and he seems very knowledgeable. Good luck! Pam

Did your symptoms occur after an illness? If so, you might want to see an infectious disease/immunologist doctor who knows about cfs/dfids.

Yes, shortness of breath/trouble with breathing is probably my daughter's worse symptom. She said she can handle pain, tachycardia, etc. but the breathing thing is really scary. So far the doctors have not been able to figure out why.

I have a 24 year old daughter who has POTS and we live in Northern California. There is a POTS specialist now at Stanford (Dr. Safwan Jaradeh) (and apparently now they have their own autonomic clinic). Also, Stanford has a mast cell specialist (Dr. Gotlib), etc. in case other specialties are needed. As far as affordable housing in California, good luck! You could look online for areas that might be affordable to you. We love the San Francisco Bay Area but it does tend to be expensive.

Puppylove: I'm so sorry to hear about your reaction to the IV form of phenergan. I hope you are feeling better and get answers from Children's Hospital soon. Pam

Brenda: If at your meeting tomorrow the administration at the school does not cooperate I would go to the superintendent or school board (I am not sure of the process in your state) and demand an answer. I am sure that the school's attitude also adds to your daughter's stress, which is not helpful to her either. Good luck at your meeting!

Abby: My daughter was told by several doctors that it was just "anxiety" until we finally found a team of doctors that we are working with that seem to understand. My daughter also had a doctor do a poor man's tilt table test and he brushed her off too. It wasn't until she went to a cardiologist who did a tilt table test that the POTS was confirmed. Did the doctor say what your heart rate was when he did the poor man's ttt? Pam

My daughter's insurance covered most of the costs of her cardiac rehab for her POTS.

I know the symptoms can be unbearable but my best advice is to not give up and have someone that can be your advocate (your husband perhaps). The more research that you (or your advocate) can do, the better. My daughter has had POTS for 19 months now (appeared suddenly after a viral illness). We have been to countless doctors. Her symptoms are so severe that she is housebound. I believe we finally may be on the right track now (hopefully within a few months we will know if the meds she is on are helping) Good luck!

I have not heard of gluten withdrawal but who knows, anything is possible. My daughter went gluten free for 4 months - no improvement but no worsening either.

David: Welcome to the forum! My daughter is also 24 years old and has POTS (she was diagnosed at 22). She was feeling perfectly fine and then one day she came down with a virus which lasted about a week. Two weeks later the POTS symptoms started. It's been quite an experience trying to get a diagnosis and treatment plan. So far we have not found anything that has helped but she is just starting a new treatment and we are hoping to see improvement (if we see improvement I'll let you know). Pam

Welcome to the forum! I'm sure you will find a lot of useful information here, as well as support from fellow potsies. Pam

Issie: So glad to hear the good news!!! Please keep us posted. Pam

I believe some people have POTS and the cause is not known. Try thinking back to when you first had symptoms. Was there an event that could have triggered it? In my daughter's case, they believe a virus was the cause. This is helping us in her treatment because it gave us an idea of which way to turn and it gave the doctor's clues on what was happening in your body.

Your doctor should be able to best advise you. I know in my daughter's case both her PCP and infectious disease specialist told her NOT to get the flu shot (but the people around her should).

I think this is a problem that many struggle with. Even as a caregiver I find myself thinking that my daughter has to have something else going on rather than "just POTS". Since she was diagnosed with POTS right after a viral illness we are convinced that this is the problem. Still struggling for answers though.