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About Trach

  • Birthday 12/01/1963

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    Reading and volunteering

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  1. I have mixed emotions about Dr. Suleman. While I believe he is a caring doctor and I especially liked his support staff, I must have seen him during the height of his expansion. I received a POTS/NCS diagnosis, but had difficulty with physical therapy when I kept having migraines. Although Dr. Suleman said he would contact my neurologist in Houston, he never called after repeated attempts by me and my neuro. So I was the one who figured out midodrine and florinef were the cause of two hospital visits. Then I ended up diagnosing myself with EDS one year after I had made three 3 trips to Suleman's office for joint/arm/leg pain. I scored 9/9 on on Beighton's test when Dr. Dhar examined me. However, I saw Dr. Suleman right after his new office was opening. Since then he has diagnosed numerous patients with EDS and many people have been pleased with him. So, I believed I caught him during a bad time. He does have an extensive testing facility and is very knowledgable about autonomic dysfunction. His physical therapist and other staff members were great. Dr. Suleman was just stretched too thin at the time.
  2. Thank- you for your replies. The on call docs decided to defer the issue to infectious disease. The mom is using the ear thermometer that the hospital used to use until a few years ago and the same one her PCP still uses. The docs did acknowledge her daughter was hot to the touch, had chills, and was flushing. Mom is not comfortable putting a central line back in until the fever is gone (looks like MRSA). The problem is there isn't a fever under the hospital method, but there clearly is a fever when taken by ear and by observation. I cannot find any articles that support which method to use for dysautonomia patients. Hopefully infectious disease docs will clearly observe the patient and see she is in distress. Thanks again for the advice!
  3. Dear All, One of our members has a daughter with dysautonomia and EDS. Her daughter is very ill and recently had a central line put in for TPN. The line got infected. We need your help. The children's hospital has been very good at addressing the infection. Line is out. Except the mom has always had to take her daughter's temp with an ear thermometer. A mouth thermometer rarely shows a temp. Her daughter is now showing a large spike again by the ear thermometer but the hospital refuses to go by the ear thermometer. The hospital insists on using the oral thermometer. Oral is 97 ear is 103. Can anyone help with articles supporting ear thermometer? Thanks, Trish
  4. Although Midodrine was a miracle drug for me at first, the headaches became unbearable. I was eventually hospitalized to bust the migraine. I tried midodrine again two years later so that I could go shopping. I will never try that again! I had the same problem with florinef. I do not have Mast Cell, but I seem to be sensitive to medicines that can cause headaches.
  5. My vitamin D level was 10 so my doctor prescribed 50,000 units once a week for 8 weeks. I am now on my ninth week and will switch to 2,000 units daily this week. Honestly, the 2,000 daily vitamin makes me somewhat nauseas, whereas the 50,000 unit pill did not bother me. Go figure! Although I still have NCS, my tachycardia is gone!
  6. Hi Kayla, I am so sorry you are in the hospital. It sounds miserable. Someone needs to check me on this issue, but it was my understanding under the patient's bill of rights, your doctors are required to consult a doctor at your request. There is no reason why your doctors cannot speak to your specialist, even if she practices at another hospital. I have been in the same position several times when a specialist from another hospital was consulted. Ditto for other friends too in other states. If you talk to your doctors again and they refuse, I would request to speak to a patient advocate. You have a gastro specialist who understands your condition. There is no reason for these doctors to "reinvent the wheel". Feel better soon! Trish
  7. I know how frustrating it can be. My boss, the owner of our company, did not believe his employees should take sick days. So my became very difficult when either my daughter or I was sick. I was able to complete some of my work from home, but the owner of the company wanted me available at any time for his questions or impromptu meetings. Just remember to keep all of your communication with your employer positive and professional. I know that is difficult given the circumstances, but you do not want to give them any reason to state why your arrangement from home isn't working. I know it is a hassle, but the more organized you are for your lawyer, the more likely he/she will be able to determine if you have a case and if you have damages. I hope everything will work out well for you. Stress is the last thing you need. Trish
  8. Anna, I definitely will. My doctor told me the stress echo will have the effect on my heart as if I were standing.
  9. I recently had a cardiac evaluation for a potential new procedure for POTS (stellate ganglion nerve block) Unfortunately, it looks like my plans for the nerve block have been put on hold, because my EKG was abnormal when I stood up during my stress test (the rest of the test was normal). My cardiologist said the abnormal part could either be something wrong with the electrodes when I stood up or that EDS Hypermobility has affected the blood vessels in my heart. I am scheduled to have a dobutamine stress test to evaluate the blood vessels in my heart. Does anyone know about this problem? I have always felt something tight in my chest when I stood up, but I thought it was related to POTS. Any advice would be greatly appreciated. Thanks, Trish
  10. Anoj, I am really sorry to hear what you are going through. In my pre POTS life , I worked in the business world. The one thing I learned is if there is any possibly of pending litigation, write everything down. If you haven't already done so, briefly summarize all the conversations you have had with employees and managers at your company that could be relevant to your employment, the date, and anyone else who participated in the discussion. Make sure you have all of your email correspondence for your lawyer along with a employment summary (Ie. Date hired, short term disability dates, etc). Also, any previous employment reviews would help. As McBlond said, the laws vary significantly from state to state, so your lawyer will provide you with advice. It is up to you to provide the evidence. (that is unless you do sue and your company is required to provide documentation). Good luck! Trish
  11. Hi Katie, I have EDS and very fibrous breasts. My ob/gyn told me fibrous breast can be genetic (it does seem to run in my family). I was also told caffeine can make the condition worse. Since I love my morning coffee, I have chosen to have fibrous breasts! (I have gone off of caffeine previously to see if it would reduce any of my symptoms. There were no changes, so I happily resumed my morning coffee.) I have also had cyst biopsy which was negative. I will always need an ultrasound. Regarding stretchy skin, I totally agree with Nowwhat". If you want to see examples of "stretchy skin", you can google image ehlers danlos hypermobility. Please realize you will see extreme examples, but there are also pictures of the more moderate cases meeting the criteria. I thought I was "normal" until I used the images from an exam and compared myself to a friend who is not hyper mobile. However, like Nowwhat said, only a experienced doctor can truly evaluate you. I hope you find answers soon! Trish
  12. Ken, Maybe this article will help: http://www.ncbi.nlm.nih.gov/books/NBK1279/ Trish
  13. I have not been able to tolerate any type of hormone. I ended up in the hospital with vicious headaches when I first took the pill and years later when I was given Premarin. My headaches and POTS symptoms are significantly worse during my period. However, my daughters have been able to tolerate birth control to lessen the frequency of headache/POTS symptoms.
  14. The first round lasted around three weeks. I am on my 5th week so far on the second round. Regarding the sub occipital that was ablated, I had that procedure over a year ago and it is still working. So once the second occipital block wears off I plan on having the nerve ablated too. (I cannot begin to explain the overwhelming relief to wake up and not feel the " ice pick in my eye" pain I used to feel on a daily basis). Maiysa - As I understand, there are different drugs that some docs prefer to uses for the blocks. Your experience sounds awful. Do you think it was an allergic reaction? Please feel free to PM me anytime. Although I have had nerve blocks by both a board certified pain management doc/anesthesiologist and by a neurologist who specializes in pain management, my daughter's pediatric neurologist (who I admire greatly) recommends only using a neurologist (preferably a headache specialist) for headache nerve blocks. Trish
  15. Diamond, I forgot to mention I opted for the nerve block instead of botox. My older daughter had tried botox a few years ago for her headaches and did not get any relief. I have discoved that most medicines and/or treatments work similarily on my two daughters and me. So I opted for the blocks instead of botox. The three of us had all had nerve blocks this year by different doctors. Other than being hospitalized for iv DHE with Toradol and iv nausea meds, the blocks are the only way for us to get rid of a headache. Also, Migranol and Cambia help us sometimes. We also take Effexor for preventative.
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