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Everything posted by mwise

  1. It may be time to revisit what medications you are taking. You may need to add medication to increase your blood pressure and a motility drug/nausea drug for your nausea. Another alternative is to see another physician, who also specializes in what you have for a 2nd opinion. I would also suggest if you can tolerate power drinks and shakes/smoothies for calories as easier on your digestive system especially the high protein shakes.
  2. Focus on the good days with her illness to be intimate. I agree with TCP. Try using also fore play for intimacy such as cuddling, hand holding, kissing, finding the right position, lubrication, what ever works between the two of you.
  3. Stay hydrated, go with wet hair, cooling neck wraps, cotton light clothing, park close, asked to be seated in an area for handicapped persons which should be close to the floor. Also check with the school to place you where there may be air conditioning on. I also use a cooling vest which helps. I just attended my daughter's college graduation in a gymnasium, which my daughter had special seating for me. Every little bit helps on that special day
  4. Saline IVs do help. I haven't had it by Subq though, only into my veins. I do feel better after saline IVs. I mostly hydrate by fluids orally especially Gatorade and electrolyte water. I would recommend tracking her intake of fluids daily and try to increase a little everyday. That is how I built up my intake of fluids. I take Domperidone for my Gastroparesis. It is the only thing that helps me to eat and sustain weight. Like mentioned, it is not approved in the USA. I get it from Canada from my PCP prescription sent to a pharmacy there, who ships to me back in the USA here. There was nothing else that worked.
  5. Looking to purchase a cooling vest. Any suggestions are welcome about how well they work in hot weather and the type to purchase.
  6. I am on Midodrine, which I haven't experienced any fatigue. I am on a pretty aggressive dose d/t poor Orthostatic Hypotension Dysautonomia (OHD). I also take Florinef and Mestinon. I also do a lot of homeopathic remedies. I found Vitamin B helps combat fatigue for me. It is very true what works for one person may not work for another. It has been trial and error to find the right combination to control the symptoms. I worked with my Neurologist at Cleveland Clinic, GI specialist, Dietician, Endocrinologist and a good homeopathic health specialist over the course of 6 years and continue to do so. It is definitely a work in progress. Good luck.
  7. I take Domperidone for my Gastroparesis. It is the only thing that works for me. I follow a low fat diet, eat small meals and take Domperidone 4x a day. The unfortunate thing is I have to get it from Canada as it is not approved in the USA. I actually take Mestinon 3x day for my Orthostatic Hypotension Dysautonomia. It helps a little to keep me upright, but it is actually Midodrine that keeps me walking.
  8. I too have gastroparesis, take Domperidone, Tums, 6 small meals that are low fat/fat free, drink smoothies when I can't tolerate meals. I also take a probiotic once a day. It is a work in progress to keep weight on, but as the Dietitian at Cleveland Clinic said you need to make it a 24 hour process to figure what will work for you. I too at one point was looking at a tube feed, but made it a goal to work to eat even if it were a few bites and liquids daily to eating 6 small meals a day. I even manage to eat out now and than with family and friends. Everyone's treatments are different and you have to try different things until you find what works for you. Good luck.
  9. I can't travel to the Southern States as the atmosphere changes in flight and by car are felt as I travel to the Southern States. It affects me terribly. I get fatigued, blood pressure drops, heart goes up and I actually have fallen/fainted. My medications don't seem to work at all. I found that out when I visited with my friends in South Carolina. Even though, they had central air, didn't matter, I was bed bound most of the time. I was also using a wheel chair when out the whole time. I will never again go south. I tried it twice to no avail. I am fine traveling where there is low humidity like the western states. I am fine on the east coast and of course where I leave in NEO. I do struggle with hot to cold changes quickly, but nothing like when I was down in South Carolina. I would suggest finding out the weather conditions and gage your travels from that. Just saying. Good luck.
  10. I feel best when the weather gradually goes up and stays between 68 to 70 degrees. Also a full moon doesn't help either. I live in NEO and right now our weather goes from cold to hot every few days which is causing my blood pressure to stay low causing me to want to faint unless I am sitting or laying down. The only thing that helps is I put air on and do a lot of sitting and laying down. The cool air helps.
  11. Try BrightLife Direct for compression stockings. They have good prices. Google them. They have all brands, sizes and good customer service. Good luck.
  12. I see Dr. Robert Shields, Neurologist for OHD at the Cleveland Clinic and just love him. I would recommend you see him. He is very compassionate and knowledgeable. You are welcome to pm me.
  13. Congratulations! What beautiful pictures and glad you had a wonderful time. Much happiness and a great life wished to you all.
  14. I am with everyone else. I am always lagging behind, but I am thankful I am able to walk. lol I do stop and smell the flowers and enjoy things in life since being diagnosed. I don't take anything for granted and live in the moment. Hugs to all of you here for sharing and getting me through each day.
  15. I was pretty much bed, couch and chair bound without Midodrine. It was the miracle drug for me. Once on it, I was able to walk again and have some normalcy in my life. I returned to work full time. I have the side effects from it, but the benefits of having some life again out weight the side effects. My dose has increased of the past year and a half being on it. I take 10mg 3xday with a 4th dose when I am out late in the evening. When it wears off, I am basically symptomatic. Unforunately for me, I can not stop or wean off of it. It is what keeps me going. I know some haven't been so lucky to have success with it, but for me it was a life saver. Good luck
  16. I agree with all the previous posts and would add that it is my understanding that if you have Gastroparesis than you should be following a diet low in fat content. Fat is hard to digest and will cause both nausea and pain when you eat fatty foods. As others have said, it will be trial and error to find the foods that you can eat. A good book: Calorie Fat & Carbohydrate Counter by the Calorie King Allan Borushek-Dietician helps with identifying how much fat and carbs are in foods including fast foods eaten outside the home. Google Gastroparesis and you will find foods that will work for you. The website www.CalorieKing.com is helpful too. Good luck
  17. Welcome to the best forum for support and a wealth of knowledge to help get your symptoms under control. I have gastroparesis too.I was diagnosed by a GI doctor. I am on a gastroparesis diet thanks to a good nutritionist which is a low fat diet. With gastroparesis, it is hard to digest fats. Eating smaller meals low in fat has helped along with taking Domperidone 20mg 4xtimes a day (before meals and at bedtime). I had taken Reglan and Erthromycin without success. I recommend getting the book Calorie Fat & Carbohydrate Counter by The Calorie King helps with understanding the fat content of foods especially when eating out. The website is www.CalorieKing.com. Many of us have similar symptoms, yet different treatments that work for us. It was trial and error to find what has worked for me. Dinet has been a great help. Good luck and prayers sent to you.
  18. Congrats on your job! I agree with the above suggestions. Here is my suggestions since I have a desk job. Make sure you have a good chair to sit in and do isometrics a few times a day at your desk during the day. Get a small refrigerator or keep a cooler with items to keep you hydrated and prevent nausea. I keep extra medication in my desk. I keep a blanket and sweaters in my office with the change in temperature. I also have a space heater if I get cold even use it in the summer if need be. I also keep the lighting down as the flourescents bother my eyes by having some of them removed. I continue to wear support thigh high hose and keep my rollator walker close by in case I get tired. The most important thing I found is finding someone to bond with at work. I am fortunate to have a great group of staff that understands what I have and helps me throughout the day if I am feeling weak, tired and symptomatic. They are good listeners too . Good Luck and keep us posted.
  19. I know in Ohio, the rules are on-line. You may want to check on-line for your state regs, otherwise i would recommend calling the DMV. I also believe you know what is best for yourself. Good luck.
  20. Welcome to the best informational forum and support system. I am on Midodrine 10mg 3xday & a 4th dose when I am out in the evening. I also take Mestinon 60mg 3xday too. The freezing, feeling cold, head itching, skin crawling, urinary urgency/frequency and headaches are Midodrine side effects. I actually know when it is peaking as these get worse for me, but being able to walk and work out weigh the side effects. I also do homeopathic treatments with Vitamin B, C & D along with a strong multi-vitamin. Look in my signature for my treatments. Some of these may help you. Again, welcome.
  21. I am sorry you are experiencing this. I lost my hair too. I did cut it short (recommended by my beautician) and like songcanary mentioned used one of those supplements for hair from a local health store (they helped me find the right supplement). I also had help from my beautician-bought hair shampoo/conditioner specific for damaged hair. This may sound gross, but I also stopped washing it everyday per my beautician every 2-3 days because it was so brittle and dry. It took a good 6 months to get my hair to being healthy again. I am glad to say, It is staying healthy, but I gave up the length and keep it short. Good luck.
  22. Welcome to the best site and group of many knowledgeable individuals with similar yet diverse backgrounds. Many of us have alot to share with similar symptoms and diagnoses. I would recommend having a repeat TTT. Most of your abnormal results were similar to mine along with an abnormal TTT. I was diagnosed with OHD(Orthostatic Hypotension Dysautonomia) Autonomic Neuropathy-Idiopathic/Auto-immune in nature. Good luck and keep us posted.
  23. I have always told others that if you love what you do, the money will come. I have taken many jobs with lesser pay but gained more satisfaction and less stress with positive results-more happiness and yes at times more money. I agree with tablet that this may be a good fit for you. Good luck and keep us posted on your decision.
  24. Welcome to the forum Greg. I am sorry to hear your symptomatic. Katybug is right, you may want to see someone who specializes in NCS or autonomic dysfunctions. You may also want to try some treatments such as salt loading, keeping hydrated well especially when outdoors with electrolyte drinks (G-series Gatorade), stooping instead of bending over, cooling clothing-vests, support hose/socks, small frequent meals high in protein low in fat, high potency multi-vitamin and Vitamin B which helps with energy and fatigue. There is alot of good treatment information on this site. Have you been checked for Thyroid problems or Vitamin D defeciency which can make you feel more tired? Hope you feel better soon.
  25. Jesse pretty much summed it up. I am taking Midodrine 10mg 4xday with all the side effects, but the benefits of being able to be upright, walk and work makes it all worth while for me. I also take Mestinon too. I couldn't tolerate Florinef. I started on a low dose 3xday and now up to the 10mg 4xday. It has been trial and error for me too. Good luck and I pray everyday for a cure for us all.
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