mwise

Count me in with loading on fluids-a 1/2 liter of water, a cup of coffee, medications and support hose 30-40mmhg. Best by mid-morning, slower by afternoon and exhausted by evening.

I am an INTJ. Fits me pretty close. Thank you for sharing.

Adding my 2 cents, I agree with everyone here. Keeping the line of communication open is the most important and finding what works best for you and your daughter to discuss what is going on with you. I do know that you may have to have the discussion on-going and reinforce it as needed. I know just this morning, my daughter who is 16 1/2 asked me what I was looking at in the bathroom cause I was bent over leaning toward the floor. I explained I wasn't looking at anything and was bent over cause I was feeling faint and was going to ease myself to the floor to sit. She looked at me strange and just said, "Oh ok." It made me realize I need to sit back down with both my daughters and remind them when they think I am doing something odd, different or strange like bending over and sitting on the floor in the bathroom that it is because of my illness and this is normal for me. I know like most kids, they want a normal mom to do things with them. I admit I hide allot of my symptoms and try real hard to be normal, but than this morning reminded me I am not normal and I need to let them know I am different but yet ok. I also believe letting them know you love them whether a hug, kiss or telling them to have a good day lets them know you are there for them. Hugs & love to you & daughter and everyone here.

Thankful gave you great advice. A headset works well too in place of ear plugs-it helps muffle sounds too. If you are cold, layer your clothes. I would add that you may want to contact the colesium to see what handicap accessible accommedations are already in place such as exit routes, elevators, wheel chairs, bathrooms available, etc...I would also pack a lunch if possible and if aloud drinks, bring what ever you eat or drink normally. I would also ask them about start, intermission and end times so you don't have to get caught up in the crowds of people. I know most places have handicap parking or even Valet parking so you don't have to walk far. Being prepared ahead of time so you can relax and enjoy the concert. Good luck and have fun .

Kudos to you, Alyssa! Unfortunately, there will always be persons that are ignorant of how a person is because it is human nature. The old saying to remind us all, "Don't judge a book by it's cover." It is sad that many don't live by the saying, but we can't let them get to us. Just enjoy being much safer out and about. How clever you are with the helmet . Hugs and congrats to you.

My symptoms waxed and waned like chaos. I have better days than bad days. I just take each day as it comes. I still have bad mornings, but once I get hydrated and take my meds, i am functional and enjoy the day. By some evenings, I am tired and just rest while other evenings, I do take extra Midodrine and go out with friends who understand what I have to places where I can sit & relax. Like I said just take each moment of the day as it comes and make the best of it whether feeling good or bad. I pray everyday for a cure for all of us.

I think the life alert system may be a monthly fee through a center. They send someone out to hook up the transmitter and give you either a pendant or wrist band to sense the transmitter. I have heard they do monthly checks to make sure the system is working properly and that you are ok. Hope this helps.

How precious your sons are!!!! What a blessing to even make sits for you!!!! How special!!!! Hugs & love to all of you. Enjoy those walks.

It was a God send for me. I couldn't take Florinef and Mestinon did little, but when I was put on Midodrine, it got me walking again, got me back to work and having some life again after being bed, chair and couch bound. I had to have it adjusted up and take it even when I am laying down. I live with the side effects, but the benefits of walking, working and having some life out weigh the side effects. I still have days even taking it, I am still fatigued, experience low bp, elevated heart rate, etc...but have good days the out weigh the bad days. I can tell when it is going out of my system and depend on it to keep me walking & upright. Without it, I am bed, chair and couch bound dropping all over the place. I am sorry it doesn't work for everyone and I am thankful it has worked for me. I do pray every day they find a cure for us all.

I agree with Lieze ear plugs help even head phones help too. I am both light and noise sensitive use low lighting, wear sunglasses and/or my tinted eye glasses along with keeping sounds low key.

I agree with thankful. I would check with your doctor before weaning off any medications. I also believe that Medications are for symptom control and can cure illness. I know right now the medications I am taking are controlling my symptoms, keeping me walking and helping me have some normal life. Good luck

I agree with Angelika with how nice they were taking their time and ordering a battery of tests to try to find the underlying cause of my dysautonomia. I was actually diagnosed at the Cleveland Clinic by a TTT and QSART with Orthostatic Hypotension Dysautonomia, Autonomic Neuropathy. To date, it is idiopathic in nature and the symptoms are being treated with Mestinon & Midodrine. I see Dr. Robert Shields at the Cleveland Clinic in Cleveland, Ohio. I like him very much. You can PM if you have questions. Good Luck.

Hi Jennifer, My heart goes out to you. As some of the others have shared, you may need to work with the right combination of medications and treatments. My BP was like yours when I so called crashed and burned at work by passing out, hittting the floor, coming to after a few minutes and being taking to a hospital in Cleveland, Ohio where I was diagnosed with Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy) by a TTT, QSART Test and a few abnormal labs in Dec. 2010. My BP during my hospitalization would drop upon standing like yours to 50 or 40/20-0 with symptoms of being ready to faint-lightheadedness, fullness in head, shortness of breath, weakness in legs & body to dropping right in bed. As long as I was lying down or sitting, I was fine with a low BP of around 100-90/70-60, but if I stood up-BP dropped to almost nothing to passing out. I also lost 30lbs in 10 months before I crashed & burned. The 1st medication they tried was just Florinef, but the side effects were horrible for me. I was taken off of it. I like you survived on Yogurt Smoothies and a bite here & there of food. I was also diagnosed with Gastroparesis and put on a low fat/fiber diet. I was started on Domperidone 10mg-now on 20mg before meals & at bedtime to help with nausea & motility. I like you spent my day crawling back & forth to the bathroom and on bedrest. It took almost 21/2 months before I began to turn the corner and was actually able to walk again short distances thanks to Mestinon and Midodrine & a combination of other medications along with homeopathic treatments of vitamins, etc...I have had a few adjustments with dosage of Midodrine, but have some normalcy of life. I am back working full time even though I do have a desk job, I do go out shopping but time my shopping excursions usually with someone just to be safe. The summer was a struggle because of the heat. I tolerate cooler temperatures much better, except if it is too cold. I have good & bad days and adjust accordingly. I just take each day as they come and make the best of them. I am hoping something I shared may help work for you and get you back on the right track. PM me if you want to talk further. Good luck and I hope they find something that will work for you.

I also can tell when my blood pressure is low-fullness and buzzing in head n ears, feel nauseated with a stomach ache, sensitivity to light and sounds, etc. I automatically sit or lay down because if I don't I will drop to the floor. I wish we all could find a cure.

I am with you all. Having this illness during this time of year is added stress to the holidays. For me, the real reason for the season is Jesus Christ. Forget about the hustle and bustle going on and just do the best you can and focus on yourself to get or stay as well as can be. Hugs & love to all with Dysautonomia and any other non-curable disease.

You need to count all fluids whether water, tea, coffee, pop, power drinks, juices, etc...even fluids in cans as part of your intake. You will be surprised at how much you are taking in. I drink more than 3 liters of fluid a day and continue to hydrate during the night. I do use a water bottle as a measurement. It is 16 fluid oz and calculate from it. I do small sips which it doesn't make me feel nauseated or bloated. The worst for me is when I bolus in the morning to get my blood pressure up. Yes, I go to the bathroom alot and know every bathroom in town and on my way to work. I time my stops. Lol. It was hard at first, but in time your body will adjust to the increase in fluid intake. I can actually tell when I don't drink enough because my blood pressure remains low and I am symptomatic from the low blood pressure feeling faint. Good luck and keep at it.

Congrats Lieze! It is so wonderful to hear you feel functional. It makes you feel like you have some of your life back. Just to let you know, there are grocery stores like Giant Eagle that also have scooters to use. I called around all the local stores where I live in Ohio including the mall and found there are alot of stores and the mall that have scooters. It is great to know they are so accomodating. I highly recommend getting the parking plague. It makes a huge difference being able to park close to the store especially when I am feeling extremely tired and weak from shopping. Good luck & hugs to you.

When I first started Midodrine 5mg 3xday, I experienced similar symptoms with the side effects as you all felt, but this leveled off after 3 weeks. For me, it was well worth it, because without the Midodrine, I could barely walk and was predominately chair, couch & bed bound. Once on Midodrine along with Mestinon, I was able to walk again, returned to work full time and have some type of life. I would suggest that if you continue to experience little change after 3-4 weeks, I would give your doctor a call. Good luck.

I wasn't diagnosed til later on with Dysautonomia, but I will tell you I have Endometreosis and had identical twin daughters at the age of 40 without fertility drugs or any treatment. As with others on here, having children are a big responsibilty and you need to know what you are capable of handling including having a good support system. I am so blessed to have them especially with having Dysautonomia because they are such a joy, help and give alot of unconditional love to me. A Hug & Good luck with what ever you decide to do

I wish I could tell you I had a good experience but I can't. I have had 3 treatments and was supposed to have 5. They only gave me 3 and stopped it because of all side effects i experienced. I would never have it again. Enough said. Sorry.

I am home in bed with a terrible cold, sore throat, headache, cough & runny nose. This is my real 1st cold I had since I got sick and really nervous about having it. I tried OTC-Theraflu and Nyquil with horrible side effects. I am just taking Ibuprofen and 1000mg of Vitamin C along with my normal medications now. I have a call out to my Neurologist to see if he has anything to recommend. I am open to try something else to get rid of this cold. Any suggestions are welcome.

I was worried about general anesthesia for a recent D&C I had. I explained to the Anesthesiologist my disease and how I have reacted in the past with general anesthesia. He opted for a TIVA Infusion (Total Intervenous Anesthesia-A profolol infusion). The best anesthesia experience I had. I would recommend it in place of general anesthesia any day. Good luck.

Welcome to the best forum and support system. There is so much great information here. It has helped me with knowing how to deal and treat this non-curable disease. I couldn't do it without this forum. Again welcome and hugs to you.

I agree with the others with fluids, salt loading and getting up early. I also adjust my meds to make it help. Sorry you are feeling nauseated. Hopefully, you will find something to eat that doesn't nauseate you. The most important is to hydrate. Good luck.

I feel that way after a BM-sorry to be gross. My mornings are tough especially when I haven't taken my meds and hydrated well. Anytime I eat too much fat or don't hydrate well, I feel faint. This disease is no fun and hard to control. I wish we had a magic wand to wave to make us well.