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Everything posted by bellgirl

  1. @rje11 I had a wonderful neurologist in Birmingham, Dr. Riser; he worked with me some, but usually took care of MS patients, and didn't know enough about Dysautonomia, but he was my favorite Doctor and was willing to learn. He let me talk until I was done asking questions and adding what I had learned with him, however, and was very empathetic. I also went to Dr. Phillips at the Dysautonomia-MVP center in Birmingham mvpctr.com, and she was great knowing what meds I needed to keep me stable; she did my first echo, stress test, EKG and TTT. She diagnosed me with Dysautonomia/MVP/POTS, and dealt with one issue at a time with medication for 7 years. In Huntsville I found a cardiologist, Dr. Kiessling who has diagnosed others with POTS, so I went to her, and she is great giving me a echocardiogram and reading it before I left the office, which is great for me. My PCP is wonderful, too, and will write all my prescriptions, too, so I have no need to go back to Birmingham, anymore. I just don't do well traveling. I need to medicate to travel, and didn't feel the need to go back. You may need a neurologist who is familiar with POTS. I've heard that Dr. Hitchcock, and Dr. White in Huntsville and Dr. Kazamel at UAB are good neurologists for Dysautonomia, although I'm okay right now with the meds I'm on, so until I need something more, I will stay with my Rheumatologist, Dr. Phillips, Tim Byrum NP, Dr. Strickland my PCP, and Cardiologist Dr. Kiessling.
  2. I have Autonomic Vertigo. There is nothing wrong with any of the vestibular testing that was done. I had at least 4 tests. My doctor specifically did a thesis on Autonomic Vertigo, and no matter what medication I am on, I still have it. I'm not as nauseated, dizzy, misjudging curbs, as I did when I was first diagnosed, but I do take zofran on long trips, and that does help. It hits when I least expect it, and yes, it's like fainting without passing out, to relate to what you are talking about. I broke my foot last year, falling backwards off a retaining wall. I did a 180 degree in the air, and thankfully didn't land on my head on the cement, but the brunt of my fall was on my left foot!! I couldn't right myself and would have fallen about 3-4 feet on my head. Sometimes I think I can do all the things I used to do, but I really can't.
  3. Yes, I get the "ify" part; to top it off I only had 5 days of the Doxy, so I'm not convinced I'm rid of it either. My Western Blot was done in 2011 before my bulls-eye, and then I had it done again, but it was way after, as well. Mind you, I've had other tic bites that were inflamed, too, that I was also treated for Lyme with antibiotics. Now the CDC does more thorough testing, which I never had done, but kind of wish I had done it, back when I had the bulls-eye. My Western Blot was done in Birmingham at reputable labs, but I'm still skeptical, because my results were just on the border, and this was two years after my bulls-eye rash, so I'm not really sure that there aren't some beasties floating around in there still. I still suffer with a lot of achiness, especially when the weather changes.
  4. What testing did they do for Lyme, Issie? Because I live in the woods and not only found tics on me, but had the bulls-eye rash once. I even have pictures of it!! I was treated right away with doxicycline, though, as a preventative, but I still become fatigued and am limited to a degree, but not as bad as I used to be. I'm also older, too, so sometimes that could be why I'm not as energetic as I used to be before all of this!!
  5. They are medical doctors. I went to Dr. Phillips, and liked her, but since she was about a 2 hour drive both ways for me, I now have a cardiologist in Huntsville, who also has diagnosed POTS. They can recommend nutritionists, and other physicians, but I go to a homeopathic doctor, who is also a medical doctor here in Huntsville, Dr. Calvert, through his business Renue. He uses metabolic code to figure out where you need to be with supplementation and all the supplements are American made. I'm on aged garlic, and high doses of niacin for my high cholesterol. I take a lot of supplements, antioxidants, vitamins and minerals, etc. I also take a natural vegan energy drink before going to the gym. I also watch my diet. I just recently took an advanced probiotic, with prebiotics, too, and it really helped my GI tract. My hematologist ordered it for me, as I went to him for anemia and my iron binding capacity was also abnormal, but now all is well on that front. It was prescription strength probiotics. I'm also on bio-identical hormones, too, so I'm feeling so much better. I've decreased my doctor base to 5 instead of 8, so I'm happy about that. If I need a neurologist, I'll find one in Huntsville, too. But right now I'm good.😃
  6. The doctor's at the Dysautonomia-MVP Center are Dr. Susan Phillips and another woman Dr. Paula Moore, too; Dr. Watkins, the cardiologist is no longer there. He had to retire due to medical issues.
  7. Yes, Issie; there is the mvpctr.com Dysautonomia-MVP Center in Vestavia Hills, Alabama; I went there for 7 years, but once I found a Cardiologist who diagnosed POTS in Huntsville, where I live, I left. They diagnose, and manage medications for Dysautonomia, and have good recommendations for other doctors in and around UAB for other issues; I hear there is a neurologist at UAB, who is an autonomic specialist, who is taking appointments, but there is a long waiting list. His name is Dr. Kazamel. One girl, who just made an appointment is going to see him in May. Vanderbilt also has autonomic specialists, too! I hope this helps. Coming from Arizona, where some of the best doctors are there from Mayo, Vanderbilt and Mayo work together!! I hope you are doing well!!💙
  8. My husband has taken down every flourescent light from our home. I can't stand to drive at night either. I hate to go anywhere with flourescents, which seems to be everywhere you go, anymore. I wear sunglasses everywhere or I suffer the consequences. I've always had one pupil that is more dilated than the other. I also have issues with vertigo, double vision and blurred vision before being treated. My vision actually has improved, because I spend most of my days on the computer, and don't need correction for close up vision without my contacts. I also take a medication to increase my fluid retention, so that I have a higher blood plasma, and it's even improved my symptoms! I was diagnosed with cataracts about 6 months ago, though!
  9. Clonidine helps with blood pressure spikes. Most people are only on it for emergencies for high blood pressure, but I'm on it daily. It keeps me stable, but I'm also on Losartan and Bystolic is my beta blocker. I've had high blood pressure for almost 18 years, 15 of those years I've been on medication. I had what I believe was a slight stroke on my right side, because I wasn't on medication. Strokes run in my family, so I can't fool around. I'm not saying this to scare anyone, but so you will be informed.
  10. I'm now taking clonidine .1mg daily, so my Losartan dose has been decreased to 50mg. because of it. They work well together for me anyway. I'm no longer taking the HCT. I'm on Florinef for retaining more fluid, because of fluid and electrolyte balance. I also take Flexeril fairly regularly at night for muscle spasms, but I also have Fibromyalgia.
  11. I haven't been well enough until now to last through a whole conference before this, Jesse, so I'm excited to attend for the first time! Hope to meet you there!!
  12. If anyone is interested in going to the Dysautonomia International Convention in Washington DC from July 17-20th, It's $200 until June the 1st, then $250 there after to attend. I'm going, my sister lives there, so I have more than one reason for going. I've met two other people that are going on line, that I will finally meet in person. I'm very excited about it, since medical research is what I do as a retired RN. I hope some of you will go as well!!
  13. This is such a small study, but interesting; I'm not the least bit excited though, because that means we have an organic brain disease, which I'm assuming can't be reversed?? Yes, POTS is real; we know that already, but now we have neurotic personality traits, too, and if it is degenerative, that's upsetting to me, also. From what I have read, there are Lewy bodies in the spines of post mortem POTS patients. Now they are talking about being able to determine a Lewy body disease in Multiple Systems Atrophy, as compared to Pure Autonomic Failure in live patients in their MRI's of the brain or PET scans? They said nothing of the corpus challosum. I'd be curious to know, since mine is small, but I don't have any mental deficit. I'd be interested to know if they do any further studies. Thanks for sharing...
  14. It happens to me all the time. Singing in the choir at church does help me tremendously with my tidal volume, however I do have sleep apnea, too. It expands my lungs, so that I don't feel as if my chest is in a vice!! Love your idea of the Hallelujah chorus, Sunshinegirl!! I sang the whole Messiah in choir years ago! It was so awesome!! One night I woke up and couldn't breathe properly for a half hour, even with my Cpap, though. I also had a dream of being in a cold horse arena and not being able to breath; sure enough, I woke up NOT being able to breathe. I want to purchase a pulse oximeter, so the next time this happens, I am ready. I should have taken my B/P and pulse, but I was too busy trying to breathe!! Deep breathing does help with this...going to the beach is even better!! I have a peace that passes all understanding there. I just came back from a trip to Panama City, Florida for my mom's 85th birthday. It was wonderful, especially at sunset!
  15. Be careful Becia, and thanks ArtLuvr! Still very hoarse!
  16. I'm sick...I can't even talk, let alone sing, but I sang in the choir at church yesterday, and the day before at a funeral; today I'm mute! Lol I'm taking zicam! I think it's the weather changing so much! Snow and ice one week, hot and rainy the next! Is it Spring yet?
  17. She sounds like she has similar issues as my self. I had increased B/P and heart rate before medications and diagnosis 3 and a half years ago. They never considered putting me on midodrine, because it increases B/P. Clonidine, however, stopped adrenaline surges with me and decrease my B/P. I've never been on a SSRI, or SSNI, because it stops seritonin, which is needed for sleep and digestion, and I have trouble with both of those. I'm on a very small dose of the Fludrocortisone, because it can cause increased B/P, but it has been a lifesaver for me, in that, it has balanced the fluid and electrolytes in my body, which I've needed desperately, because of chronic dehydration and hypovolemia. It caused me to gain about 5 pounds, which was helpful for me, since I was loosing weight rapidly. If she has only tried one beta blocker, she should consider other options. I'm on Bystolic, and since the half life of the medication is 12 hours it lasts longer. Everyone is different, and all doctors have different approaches, but if they are Autonomic Specialists, I'm surprised they haven't tried her on other medications by now. I live 2 hours away from my doctors and I can call the nurse at anytime with any questions I may have regarding my health or medications and she will talk to the doctor about them. You should have that line of communication open.
  18. I've had a heart scan and exercise EKG with contrast, and my heart rate was irregular, but no blockage. My Echocardiogram showed regurgitation of my Mitral Valve was a third of my blood from the ventricle without a Beta Blocker, and there was thickening with some tricuspid regurgitation, as well, so that was significant. I'm glad that I was able to tolerate Bystolic, because it improved my heart function, so hopefully, I won't have to have valve surgery down the road. I just try not to think about it. Last night I had shortness of breath for about a half hour. I have sleep apnea, too, but this was with my Cpap; it was significant air hunger. They liken it to COPD, which is probably what this felt like. I have a lot of trouble with this in the winter because of vasoconstriction of my blood vessels. I believe I am hyperadenergenic, ( yo yoing B/P), but was diagnosed with Pure Autonomic Failure. I never seem to be symptomatic except for the first time of testing, during my testing, even though for the scan, I held my beta blocker for 3 days; I'm so used to arrhythmias, that most of the time, I don't even feel them anymore; three days wasn't long enough to be off the medication, but it did detected irregularity. If I have a heart rate over 120 resting, I'm symptomatic, but exercising I could go over 200, and sometimes not notice it, which is ridiculous. I never go above 190 anymore, usually 160-180 exercising with the beta blocker. That is still high for someone my age. I'm 58. I was on blood pressure medication, but no beta blocker when I was first evaluated, so my blood pressure did not fluctuate as it would have otherwise. However with my tilt table testing my HR rose 43 beats in 10 minutes. If it's over 30 it is considered POTS. That was when I was first diagnosed, 3 and a half years ago.
  19. If you have no abnormal EKG or Echocardiogram, you eat healthy and have low cholesterol, you shouldn't worry about this...I have this all the time, too, and I'm as healthy as anyone with dysautonomia is, although I have a mitral valve prolapse, which is probably why I've always been thin, and so does my brother. I figure there isn't much that can be done about it, so I've decided that I will enjoy life the best I can, pray about everything, and leave the rest to God!! Now that I'm on treatment, see my meds below, I'm so much better!! Hydrating yourself is imperative!! That will help immensely. Are you on a beta blocker? That can sometimes make that feeling worse. Do you exercise? That is also very important for cardiac return, (having blood pushed back to your heart) !!
  20. I was always a better friend to guys, because there was less drama, so you can talk to me anytime. I'm old enough to be your mom, and I'm a retired RN, so if you have any questions feel free to ask. I'm sure it is difficult being the man of the family and having to be in a wheel chair, but remember it is for your safety. You would be surprised how much a 7 and 10 year old may understand, if you give them a chance. You could start by telling them that even though you have fallen and pass out, and hurt yourself, that the wheelchair is for your safety, so you won't fall and hit your head, not that you can't walk. That may be scary, especially to a 7 year old. The 10 year old is thinking abstractly already, and is probably wondering if you may die, so you have to explain to them that as long as you are careful, that shouldn't happen. I'm looking at this from my pediatric nursing experience. Your wife seems very empathetic, which is good, but you are right in that she has no idea what it is like to be in your condition or position, and that is truly what this forum should be, a sounding board for someone who understands completely what you are going through. The good thing is that she understands that you are sick and need help. I'm sure it is safe to say that all of us on here have lost many friends, but those weren't the ones you wanted anyway!! My faith in God keeps me grounded, but I sometimes have very difficult days; I was an extremely active person before this, as most of us were before we became sick. Make sure you have some form of exercise, even if it's a struggle, because your calf muscles act as your second heart, so to speak to make your blood return to your heart. It's necessary. Stationery bike or even a recumbent bike to start. That will also help your mental well being, because you have natural endorphins in your body, hormones, that make you feel better psychologically, as well. What medications have you tried? My meds have been a life saver for me!! I'm on a med that holds in fluid and it helps tremendously. I gained 5 pounds of fluid in a day. That's how dehydrated I was at the time. I only weighed 100 pounds. What about meds for tachycardia or your blood pressure? Most of us are on some sort of antidepressant, too. You can PM me, as well. Since I'm a nurse, I've never completely fainted, but know when to sit or lay down, too! My blood pressure seems to compensate in the other direction, which isn't good either. There are many knowledgeable and compassionate people here; you just have to find them. Katybug is one of them!!
  21. E Soskis is right about the slow progression is not usual with MSA, and the prognosis is poor, but if your doctor feels as if your systems are failing, obviously your GI tract should be first priority, you need specialists for each specific problem. Yes, if it is autoimmune, you probably need a rheumatologist, but I agree with Gjensen, that you should probably go back to Mayo, where they first diagnosed you! If it makes you feel any better. I went 7 days once without going, and finally was moving again; I usually have the opposite problem, though. I had my first symptoms when I was in my early 40's, actually 41, and now I am 58. Keep us updated on how you are doing and don't loose heart. I'll be praying for you to find the best doctor for your needs right now!!
  22. Did he call this Multiple Systems Atrophy? Did he call it Shy-Drager? Parkinsonian or Cellebellar? Sounds as if you need another doctor who knows more about this condition. Is your doctor an Autonomic Specialist or Neurologist? How old are you, if you don't mind me asking? All these questions are for you and maybe myself and others, as I was first diagnosed with Pure Autonomic Failure, but went 13 years without a diagnosis, so it's been about 16 and half years for me all total. To be honest, I'm afraid that this will be me in a couple of years...sorry, I really feel for you. I'm a retired RN, and not on here, as much anymore, because I support others on other sites. Please ask your doctor some more questions.
  23. This is great news!! I'm glad it seems to be helping you. I think they gave my dog a half liter in an afternoon, 50 ml/10 pounds/in one site. She had a hump on her back for awhile, but it all absorbed quite well. I just read that they can give medications this way, as well, so that if for some reason someone can't take a med orally, it can be given this way; like when a patient is nauseated, for example. They also call it interstitial infusion, and said 1 ml/minute/site, so it sounds like they are following protocol. Thanks for sharing your update, and I'm glad it is working so well for you! My 3 liters a day orally with Florinef seems to be working pretty well for me, but I'd probably do better with an IV every now and then. When I have a procedure, I always ask for the whole bag of fluids and it works very well for me on the day they do that for me. I almost feel "normal". What's that anyway...
  24. Jon and Goschi, I understand your frustration. It took me 13 years to finally have a diagnosis. I was wrecking my car, because of dizziness and vertigo, and I prayed and God answered. I found an ENT, Dr. Pappas Jr., and he did a thesis on Autonomic Vertigo, which is what I had. I did not know that he had this knowledge before going to my appointment. I had gone to many doctors for years, all the right ones, I might add, to no avail, so I feel your pain!! But Dr. Pappas referred me to The Autonomic Disorder/Mitral Valve Prolapse Center of Alabama, and Dr. Phillips is wonderful. I also have a Primary Care Physician, who is willing to work with me, so that I can be the best that I can be. I'm a retired RN, and I do a lot of research on my own, and even make suggestions. You are your best advocate for your health! It's been 3 1/2 years for me; I'm not cured but I'm the best that I can be. BigSkyFam...Everyday!! Amen.
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