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Everything posted by babettess

  1. Rich, I'm from MD. I called JH to try to get an appt and they don't treat Dysautonomia. They referred me to Dr Ramesh Khurana in Columbia. MD. He has his own autonomic lab and does all his own testing. You can find his info on the DINET list of drs. I highly recommend him. Its my understanding that Dr Rowe is not taking new patients. Babette
  2. Mandy, I would think if you have been on the Lexapro ffor 4 weeks and are just now starting with the nausea that it could be a virus and not a side effect. I love my Lexapro and couldn't live as well as I do without it. Maybe you could call the prescribing doctor and see what he or she says. Hang in there and best wishes that you and your family feel better soon. Babette
  3. I have a Standard Poodle as my Service Dog. She is 2 and I have owner trained her. She alerts me when my heart rate is up which reminds me to slow down. She reminds me when I should go to bed. A few of her trained tasks include helping me when my balance is messed up because of the dizziness, getting my husband if I need him, and picking up things I drop. One of the really helpful things she is trained to do is to lay on top of me when my body is trembling. I have spells where I shake uncontrollably and my husband would wrap me in blankets and put heating pads on me to try to stop the shakes. Now I can have my dog provide the weight and heat. Service Dogs are not for everyone, but can be very helpful. I am much more independent with her by my side.
  4. If I eat anything dairy, by the next day my PoTS flares up.
  5. You have a very special girl! She's been through quite a lot in her 17 years. May God richly bless her and your family and may her health continue to improve. Mdcountrygirl
  6. Zoloft did make me feel worse when I tried it with fatigue and nausea. I take Lexapro now and it has helped me tremendously. Mdcountrygirl
  7. He's my doctor, too! He's great but will be the first to tell you that he can't cure you but will certainly try to help you feel better. He works alone so he even actually administers all his own tests himself. I loved that he saw my results as they were happening and not just on a sheet of paper. Good luck! Don't be discouraged tomorrow as he spends a great deal of time on your history. Treatment probably won't start tomorrow.
  8. You sent me a PM months ago and I just read it. Sorry! You asked if I knew of any doctors in Maryland. Yes, I go to Dr Ramesh Khurana in Colombia, MD. He is on the DINET list of doctors. Are you near Columbia? I travel 4 hours each way to see him. Hope this helps.


  9. I should add that I didn't see Dr Shields or any of the neurologists so I have no opinion on them. I saw a cardiologist.
  10. I went to CC and would suggest you see Dr. Grubb. (Hopefully I said that politely enough.) Babette
  11. Very interesting! I'm another with white bangs. Doesn't go to well with the rest of my almost black hair. I've always called my bangs my "skunk steak" because if I didn't color my hair I would look like a skunk. I do have Cherokee Indian ancestry and a very pronounced widow's peak. I also seem to have symptoms suggesting MCAD. My brother has the variations in skin color mentioned in piebaldism but no problems connected to MCAD. Also I have EDS and PoTS and he doesn't. Just thought I'd mention that. Babette
  12. I can take this, but it usually causes my stomach to hurt. An annoying side effect, but not bad enough for me to not take it. It does come in a liquid form which is what I get when I'm prescribed it. Maybe call your pharmacist and see if you can cut the pills in half so they will be easier to swallow. Hope you fell better quickly! Babette
  13. Julie, My 19 year old just talked to me tonight about how her life is so different than she wants it to be. She said, "I'm young. I should be happy and having fun at this time in my life." Actually all she can do is make it to college and then recover by sleeping. It is so hard to watch our children struggle to just make it through the day when their peers are able to do so much more. I reminded my daughter that her brain and personality are worth much more than what her body can do. Big hugs to you and Mac. Babette
  14. Lissy, I currently am taking Lexapro and it has helped my adrenaline surges so much. I started taking it in July 2010. When I started it, I took the liquid version and started out at .5 mg. I slowly increased my dosage up to 5 mg a day. This works for me. I still have the adrenaline surges but their intensity is greatly decreased. My NP wants me to go to 10mg a day to see if that will help even more, but I'm a little reluctant to increase my doseage. I am very sensitive to meds so I try to take the least amount possible. Just FYI- My husband takes 30 mg of Lexapro or anxiety. Hope you find something that helps! Babette
  15. Thanks everyone. I didn't have as bad of a day as I expected. Thank goodness. I have rested all day and the feelings didn't return. Just the typical palpitations, tachycardia, chest pain, tinnitus, presycope- you all know what typical is for us. The icy feeling was so strange. I can't imagine what was going on in my body to feel that way. Have a good evening everyone! Babette
  16. Thanks. I do have hyper pots so my bp could have been up. I took my atenolol early and went back to sleep and woke up at normal time and the strange feelings were gone. I never feel good when I first wake up and it is especially bad when I get woke up in the middle of the night. I set my alarm for 20 minutes early so I can try to get awake before I have to actually get out of bed. Today when I got woke up I got right up and my body sure didn't like it. The cold sensation was so strange but as you described it. Our bodies are so unique. Have a good day! Babette
  17. Thanks, Lieze. This was definitely weird and different than most of my issues. The icy feeling was really strange. Hope u have a great day. Babette
  18. Hi all, I just had the weirdest episode and need your input. Hubby woke me up in the middle of the night(for me)as he had to ask a question before he left for work. I got up and suddenly was very nauseated, my vision was going black, heart rate increased and my hands and the back of my head got icy cold. The icy feeling is brand new. The other symptoms I haven't had in a cluster like that and that bad for a long time. Any ideas? I felt really good for me when I went to bed so am surprised by this. Thanks, Babette
  19. I tried it years ago but it did not change my heart rate. I did not have side effects from it and I am especially sensitive to medicine. I hope it helps if tried. Babette
  20. Yeah, my nailbeds and lips were quite pink, although I completely felt starved for oxygen.
  21. Lieze, I used to get all these feelings pretty frequently. My PoTS specialist said they were from too much adrenaline, but often confused with panic attacks. I would check my O2 sats while I felt like I couldn't breathe and they were normal. I also had a peak flow meter I used and it was normal too. I started taking Lexapro about 7 months ago and these episodes have decreased dramatically. If I remember right, don't you have Lexapro sitting in a drawer that you are too scared to take? Again, that sounds just like me. Just thinking about taking medicine could throw me into one of those spells. I finally decided I owed it to myself to try the Lexapro. My dr ordered liquid so I could start out with the tiniest dose. The first night I took it all I did was put a drop on my tongue. Then every few days I would increase the dose a tiny bit more. I am up to 5 mg a day. I have truly noticed a difference in the adrenaline surges/panic attacks or whatever they were. I am very glad I decided to give the Lexapro a try. It was very scary when I first started taking it but I figured by taking such small doses and increasing the dose so slowly that if I had a reaction it wouldn't be too severe. Of course I had benadryl beside me every time I took a dose just in case of an allergic reaction and I made sure I had someone with me who knew I had taken medicine so they could keep an eye on me. I never had any problems with it like I've had with other meds. I just wanted to share my experience. I hope you feel better soon. Oh and I have low blood sugar, too. I eat small meals all day long to help with it. Hang in there and take care of yourself. Babette
  22. I have taken Atenolol for over 20 years and Lexapro for 7 months. I have not gained any weight and have very thick hair. We all react so differently to meds. I'm am typically very sensitive to meds but these two are my wonder drugs. I take rather small doses of each, though. (25 mg a day Atenolol and 5mg a day Lexapro.) Sorry I'm not much help. I second who ever ask have you had your thyoid checked recently. Babette
  23. I get the full body shakes, too. Especially when I'm cold or over-stimulated by noise. Warm blankets or heating pads and pressure on me help. Usually I know I need to get an IV if I get them. My counselor witnessed an episode and said it wasn't a panic attack. I have no idea what causes these shakes either. Babette
  24. The pump that is used to administer the numbing medicine is standard at my dentist's office so it doesn't cost more there. It works by pumping the medicine into your gum very slowly (much slower than the denist can do with a syringe). Since switching to the dentist with this pump, I have had much better pain control and less adrenaline surges. By the way, he works at our local health department and treats me so much better than any other independent dentist I've been to. He adjusts my seat to where I am less likely to have symptoms even if it means he has to stand to perform the work. He also read the entire packet of paperwork I gave him on Pots and Ehlers-Danlos before he ever started working on me. Babette
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