lgtaylor100

I made and appointment with Dr. Tullo in West Orange, New Jersey who is on the DINET list of physicians. If anyone has any experience with him, please private message me. Thanks, Lynne

As a newbie I haven't been given a good answer to this question by doctors? What have you been told causes the fatigue in POTS. Is it low blood volume to the brain. What helps?

There was a short post in 2009 about Savella. Has anyone has any experience with this medication since then? My PCP has prescribed it. Lynne

I had my cortisol tested and it was high. Not really making sense for my very low energy level. My PCP is going to have it retested. Any thoughts on this?

Hi everyone - Does anyone know of a good POTS specialist near Philadelphia? I was diagnosed at a major teaching hospital in Philadelphia and put on a beta blocker. It helped to lower my heart rate but my major presenting symptom was fatigue. The doctor there thinks the fatigue is unrelated to the POTS and thinks it is something autoimmune. He says that fatigue is not part of POTS. I know from reading the forum that is not true. I have had labs for autoimmune disorders, had one positive ANA, but follow up ANAs have been negative. I also had a positive test for autoimmune hepatitis but my primary wants to redo it. He thinks it is a false result. I am symptomatic for Sjogren's but labs have been negative. I have CNS symptoms and cervical stenosis. I would appreciate it if anyone has a good recommendation. It is unrealistic for me to travel to Toledo, Mayo, or Vanderbilt.

Hi Everyone- I'm a newbie and am trying to understand why symptoms are worse in the morning and sometimes better late in the evening. Does anyone have an understanding of this. I go to bed each night thinking I'm getting better only to wake up in the morning feeling awful. Also, my symptoms are generally becoming worse over time. Symptoms started last June and it seems like they are progressively becoming worse. What does that mean ? Lynne

Hi Susan = Good to hear from you. I also have fibromyalgia and possibly Sjogren's syndrome. The labs keep coming up negative yet I have all of the symptoms. Is the physical therapy helping the cervical stenosis? I also have an appointment with a neurosurgeon in a few weeks. I have not been prescribed Midrodine because my blood pressure is not low, but my heart rate is high upon standing. I was diagnosed with a TTT; heart rate immediately went from 70 to 100 and increased to 130 during the test. Thanks for replying, Lynne

J- I'm from Pennsylvania, not Iowa Lynne

Hi Jana- I stopped working in September when my symptoms became disabling. I had worked as licensed counselor for which i trained in my fifties so it was particularly difficult to leave this career. I envy that you can nap in the daytime, Even though I am exhausted I can't sleep until about 11 at night. I am a poor sleeper and wake up several times at night. I wake up at about 6:30 and do very little all day due to exhaustion and muscle weakness. This has been really horrible for me. I don't know how to get back to living a somewhat productive life. I particularly miss spending time with my grandchildren. I see them but much less frequently than before. I was perfectly healthy a year ago and have not been able to identify the cause for the POTS. Thanks for your reply, lynne

I am a sixty two year old woman who was diagnosed with POTS last month at Jefferson University in Philadelphia. I notice that most of the other members are much younger. Are there other members who are close to my age. What has been the experience for others in this age group. I suffer from horrible fatigue in addition to postural tachycardia. I am currently taking atenolol which is helping with the tachycardia but i believe the fatigue is worse. I have also recently been diagnosed with cervical stenosis.

I am a sixty two year old woman who was diagnosed with POTS last month at Jefferson University in Philadelphia. I notice that most of the other members are much younger. Are there other members who are close to my age. What has been the experience for others in this age group. I suffer from horrible fatigue in addition to postural tachycardia. I am currently taking atenolol which is helping with the tachycardia but i believe the fatigue is worse. I have also recently been diagnosed with cervical stenosis.