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About goawaypots!

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  1. I have elevated cortisol levels as well. I was told by my specialist that it was not an unusual finding in pots patients and was probably caused by pots. It concerned me but the specialist did not seem concerned at all. Good luck, hopefully the additional midnight cortisol level might help provide more answers.
  2. CHRISTYD: I have tired the electronic route too. I have not had any better luck with that route. I have not emailed the doctor directly (I have a feeling this would not go over well with my doctor) but their office does have a way you can email through your chart which I have tried in the past. Bigskyfam: I agree it's very unprofessional. I have never even called and requested that the physician call me. A call back from the nurse with information is all I have ever needed. At this particular office the nurse checks with the physician on test results questions etc and then the nurse calls the patient back. I can not even get my phone call returned now when I call for something simple like trying to schedule a future appointment. As far as I know I have not ever done anything to upset anyone at the office to where they would want to purposely ignore me. I have copies of all of my records from my appointments and the physician has always stated in his notes that I am a very pleasant patient. SarahA33: This particular doctor is specialist and unfortunately the office is not even located in the same state that I live in. If it was I would go by the office. As far as I know the doctors at this practice are not accessible via an after hours number. I did not receive a call back today either. Maybe tomorrow, hopefully tomorrow?... This has become a pattern. When I first starting seeing this physician I never had problems and calls were always returned promptly. However, lately this has become a trend. I am not an unreasonable person and I know they are busy but it's not fair to do this to patients. I think the physician is an excellent doctor and his nurse seems very nice the few times I have actually been able to talk to her but the lack of return calls is so frustrating. I'm not trying to be a pest to them but from a patient prospective it is so frustrating when your call don't get returned or don't get returned in a timely manner. When it gets to the point where the patient ends up in tears out of frustration it has gone to far. Thanks for all the suggestions everyone
  3. Does anyone have any suggestions as to what to do if your physicians office is not returning your phone calls? Let me preface this by saying that I do not call excessively and usually when I call I am calling because the physician has specifically asked me to call back about test results etc. I am always very pleasant and polite when I call and I always thank the staff for their time. I am not in a situation where I can change specialists due to my insurance. I feel like the lack of communication is starting to have a negative impact on my care at this point. Not to mention that it stresses me out when I have to sit around for weeks on end waiting for a call back which only makes my pots worse. I have been to the point of tears recently due to the frustration surrounding this. At a loss as to what to do.... Does anyone have any suggestions or has anyone else encountered this if so how did you handle it?
  4. I have not tried an SSRI or SNRI but Adderall and Provigil helped me with the symptoms you listed above and were recommended by my pots doctor. The Adderall also has an added benefit of increasing blood pressure if you have low blood pressure. I hope you find something that helps.
  5. Katybug- I will send you a PM to get his information. looneymom- thaks for the suggestions. I agree with you it should not be so hard to get help. My pots condition is severe, so severe that my local doctors freak out and tell me to call the specialist that diagnosed it. They say it is way out of their league! I was told recently that my heart rate is so high that they are concerned I could end up with heart failure if someone can't get the condition under better control. DKD- I have done exactly as you suggested. I have contacted the diagnosing doctors office and explained the situation and explained that my local doctors have asked me to call them back for recommendations as my condition is currently out of control. The problem is I can't even get the specialists office to call me back. The nurse takes the information and says she will call back after she talks to the doctor but then she never calls back. It's so frustrating!! This is stressing me out and making my potsy heart rate even higher
  6. I was diagnosed 2 years ago with a pretty severe case of POTS. I have struggled over the last 2 years with follow up care as I have not been able to find any local doctors who are familiar with pots or who are comfortable treating my extremely high heart rate. They all tell me to call the doctor who diagnosed the condition for management. I get the impression from the pots specialist that diagnosed me that he is not interested in providing follow-up care. He seems to diagnose but not follow-up which is creating a great deal of frustration on my end as my pots is currently out of control. I am looking for a specialist that is willing to provide follow-up care to patients with pots. I do not need a diagnosis as I have already been diagnosed. Has anyone found a pots specialist that will provide periodic follow-up care? I am desperate to get my condition under better control! I am willing to go anywhere at this point to get help as I am desperate
  7. Thanks for the input. It's good to hear what has worked well for others. Sarah, the beta blocker that I take is propranolol. However, I can only tolerate a very small dose. I seem to be very sensitive to beta blockers for some reason. Chaos, 200 mg of propranolol would probably kill me. I am impressed you could tolerate a dose that high. I don't think I would ever be able to tolerate anything close to that dose. I currently only take 5 mg twice a day but it is amazing how much this very small dose reduces my standing heart rate.
  8. What has worked well for you when it comes to medications for migraine prevention? I am already on a beta blocker but it does not help my migraines. Many of my POTS symptoms have improved but I'm still struggling with migraines (having 2-3 per week). Has anyone tried botox? I know seizure medication are sometime used but I would like to avoid seizure meds if possible due to the fatigue that many of the seizure meds can cause. Any info would be greatly appreciated.
  9. Who do you typically follow up with for your care? I was diagnosed by a POTS specialist a few years ago but I get the impression they prefer local follow up after the diagnosis is made. I have tried to continue care with local physicians but I have not been able to find physicians that are familiar with POTS or who are comfortable treating POTS. My heart rate continues to be elevated even after being on multiple medications for the last few years. Essentially I feel that I am left without anyone to manage my care which is very frustrating. I feel like my outcomes would be better if I truly had someone managing this condition on an ongoing basis. Any advice or recommendations that others have found helpful for follow up care would be greatly appreciated
  10. “Many patients with POTS present with multiple chronic symptoms that are not directly related to orthostatic stress, and only a small subgroup of patients with POTS have a defined autonomic disorder.” All of the articles that I have read in the past have always stated that POTS is an autonomic disorder. However, according to this Dr. very few of us actually have an autonomic disorder? It’s is very disappointing that this was published by Mayo Clinic. It seems to almost go against information they have published in the past on POTS. There have been studies done in the past that showed POTS was not a psychological disorder. It almost seems like they are reclassifying POTS as a psychological disorder. I wonder if it is possible to provide feedback on the article? Has anyone ever seen the POTS specialist that wrote this article?
  11. Friedbrain, I was referring to a short course (less than 5 days) of high dose IV medrol. I have tried a short course of oral steroids in the past but it did not help. My pots has flared up really bad over the last couple of months and nothing is helping my flare. I'm not sure if my pots is autoimmune related or not but as far as I know I do not have any other type of autoimmune issues. It sounds like IV steroids are not something that is routinely recommended for Pots patients. I will just have to weigh the risks and benefits.Thanks everyone for all the information.
  12. Diamondcut, the hope is this would improve my pots symptoms. There are two possible theories behind this. 1) In some cases pots can be caused from an autoimmune condition and steroids can help "calm" the immune system down. 2) High dose steroids can cause water and fluid retention in the body. Pots patients can be chronically dehydrated and have low blood volume. Steroids can help with this. It appears as though my doctor has seen some success with this in some of his patients. However, every case of pots is different and I think it is pretty rare to have a doctor recommend this. Steroids are not without risk hence the reason I am doing some research to see if anyone else has had success with this. At this point I am willing to try almost anything that might help.
  13. Has anyone tried IV steroids rather than oral steroids for a pots flare? Oral steroids did not work for me so a short course of high dose IV steroids has been recommended instead. Has anyone tried or had success with this?
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