mwise

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.

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.

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

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.

Looking to purchase a cooling vest. Any suggestions are welcome about how well they work in hot weather and the type to purchase.

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.

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.

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.

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.

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.

Try BrightLife Direct for compression stockings. They have good prices. Google them. They have all brands, sizes and good customer service. Good luck.

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.

Congratulations! What beautiful pictures and glad you had a wonderful time. Much happiness and a great life wished to you all.

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.

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