mwise

Hi Rach, I get alot of urinary frequencey-the urge to go along with going alot. I have never had any burning or pain from Midodrine. I take Midodrine 7.5mg 3xday & as needed. I have been on it since February 2011. I definitely get the itchy scalp, goose bumps, feel cold, hair standing on end along with parathesia but the benefits of being able to walk, work and do little things out weigh the side effects. My co-workers & I laugh when we see me itching my head because we know my medication is working. I too could not take Florinef, but I do take Mestinon 60mg 3xday in-between the Midodrine. It really was the Midodrine which has helped the most. Good luck

Potsgirl, You will appreciate this-my primary doctor happens to be my cousin. LOL. He actually called me when he had received information from Dr. Shields about me having Dysautonomia and ask me all about it because he never had anyone with it and that was the 1st time he had heard of it. Trust me, he now knows because I and Dr. Shields educated him well.

I have Autonomic Neuropathy from an abnormal QSART and neural exam, which is idiopathic in nature. Dr. Shields did a battery of tests with the outcome idiopathic. We are focusing on treating the symptoms. That is good enough for me. I have Orthostatic Hypotension Dysautonomia.from a failed TTT. My blood pressure upon standing would drop to 60/40 and sometimes lower causing me to drop to the floor constantly. With the help of Mestinon, Midodrine and homeopathic treatments as listed in my header, my last blood pressure was 110/70 upon standing. I was so excited because I have never had a standing blood pressure above 100. My primary care doctor was shocked to find out what I had as he never heard of Dysautonomia. Dr. Shields and the internet is educating him on it, but I am being managed by Dr. Shields, who I like very much.

It will be a year that I got diagnosed, but I feel symptoms started after I had my gall bladder out in 2005. Prior to that I lived a pretty normal uneventful life. Since I got diagnosed which I was at my worst, I have gotten better, but continue with good and bad days, but compared to when I got diagnosed, I am better. I just pray for us all to have some normalcy in our lives with this disease and hope for a cure someday.

You can freeze milk. I freeze it all the time. I also freeze lunch meat, cheeses and just about anything pre-cooked. Sometimes, they are a little soggy once thawed but usually tasty & edible. I also make a list and time my shopping visits with my best times in the morning. I also choose stores that have electric carts to drive/ride in case I start feeling tired: Wal-Mart, Giant Eagle. There are stores that do deliver. There are still some drive through stores around. I use them when I am feeling weak. It is worth the extra few miles vs having to get out of the car & walk. I also ask friends and family when they are going to the store and they will pick up things for me. I am sure with the kids you can get creative and make it a play date out too. Glad to hear you are having good days.

Hi Steve, I am also on both Mestinon & Midodrine prescribed by Dr. Shields at Cleveland Clinic. I was put on the Mestinon 1st at 30mg 3xday and increased to 60mg 3xday. The Midodrine 5mg 3xday was added about 2 weeks later and I have been on both since February 2011. I had the Midodrine adjusted to 7.5mg 3xday & as needed. I have good days and not so good days, but I am working a full time desk job and doing little things around the house. I take each day as it comes. Sounds like your doctor wants to help you and that is good. RubyTuesday thank you for sharing your treatment plan from Dr. Blair Grubb. I have considered going to see him since I do live in Ohio and only 3 hours from Toledo, but I have a pretty good treatment plan from Dr. Shields who I like allot. I am open to suggestions.

Hi jnew, Welcome to the best forum for support, love and allot of good information to help you deal with Dysautonomia. I am in my mid 50s too and have good days along with not so good days. I do follow with Dr. Shields at the Cleveland Clinic. He is a Neurologist and quite knowledgeable. He works with on a treatment plan specific to you. He listens and will even suggest things that work from his other patients. I have heard very good things about Dr. Blair Grubb and Beverly, NP.and you may want to follow up with them in Toledo. PM me if you would like to talk personally. Again welcome and a great big hug to you.

Hi Steve, Sorry about the side effects. Have you tried taking it with food? I take Mestinon 60mg 3xday with food which has helped me. I also take Prilosec 40mg daily which helps too. I really didn't have much side effects on it. Hope the side effects subside and you continue to feel better.

I agree with Naomi to let your symptoms subside. Midodrine is excreted in urine so it should be out of your system pretty quickly. I also agree with others once subsided, you may want to take a little at a time. I also heard about Magnesium helping along with take B complex vitamins. This helped me with less fatigue especially in the morning. Being a single parent with young children is very stressful which is also not helping your symptoms. You are welcome to contact me just to talk. Just PM. I will be praying for you and your children. I am married parent of teenage daughters and it isn't easy coping with disease at any age whether married, single, widowed or divorced and having a family to provide for on top of it. Don't hesitate to PM me to talk. Hugs sent out to you.

I had plugs in my left eye for dry eye and I loved having it in. It really did help and I didn't even know it was there. I wish I could still have it, but for some reason, I can no longer have plugs. Tried Restasis and it sure didn't work. I would take a plug any day. I just live with dry eye now. Try the temporary ones-I did at first and liked them which was the reason I opted for a permit one which finally fell out after about 2 years. I had it replaced over about a 5 year period until I could no longer have them. Like I said I wish I could have a plug again. Good luck.

I had no side effects with cipro and have taken it on several occasions. Good luck.

The weakness/falling to floor, gi issues and buzzing/fullness in head. For me it 2 varies on the day, but these are the worst.

I had an abnormal TTT& QSART and a huge drop in Blood pressure by 50 points upon standing for 3-5 minutes to 60/40 blood pressure that gave me the diagnosis of Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy). I didn't pass out during the TTT. They didn't even have to raise me up only to 45 degrees when I showed a significant drop in Blood pressure without passing out. I was on Florinef too about 10 days when they did the test. I think everyone here will tell you that we all have some similar symptoms and disease processes to get our diagnosis, yet we have differences because we are all different. The key is to find a treatment that can help control your symptoms,get you feeling better and helping you be able to have some quality of life again because we all no there is no cure as of yet for Dysautonomia. Keep working to find the right doctor and treatment to get your answers.

I am taking Domperidone 20mg before meals & a bedtime along with Mestinon 60mg 3xday that seems to help me with the nausea & motility. I also take Omeprazole 40mg daily. Maybe try taking Domperidone and Zofran more around the clock instead. I found going to small meals of a low fat diet (Gastroparesis Diet) really helped with the nausea too. I was extremely nauseated, in pain, doubled over along with feeling full with fatty foods. I hope you find the right medication or treatment that will get this under control. There are alot of good suggestions here.

I am much better than when I was first diagnosed in December 2010, but it has been slow going and up & down. Once we found the right medicaions and treatments, I began to get better, but spent the first couple of months bed, chair & couch bound. I did have a relapse in the summer when the weather was hot and had to have my medication and treatment adjusted. Since the weather is cooler, higher compression stockings, more fluids and Midodrine upped, I am doing better. I do work a full time job (desk job) and do little errands around the house and outside of the house. I take each day as it comes. Some days I feel stronger and other days I spend resting and laying down all day long. I do have God in my life along with a good support system of family, friends and colleagues that help me during both the good & down times. I know I couldn't do it without them all. My doctor told me to just take each day as it comes and that this disease, medications and treatments varies with each individual.

I agree with Potsmomma. They say Dr. Blair Grubb is the best especially with POTS. It is easier to get into his nurse practioner as it may be a 6 month wait to see him personnally. He is at the University of Toledo Medical Center in Toledo, Ohio. I follow at the Cleveland Clinic with Dr. Robert Shields, MD Neurologist. I just love him. He will spend quality time with you. He has helped me alot. I have Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy). My blood pressure drops 40-50 points when standing after 3-5minutes. Dr. Shields will run a battery of tests on you to find the cause. I got my diagnosis pretty quickly from a tilt table test and QSART. Keep us posted.

Sending love and hugs out to you. I agree with the others you need rest and if you have help, let them. When I was at my worst, family and a few close friends made this difference for my children, my husband and myself. It gave me time to rest. Try small frequent meals even if you take a few bites and keep hydrated with smoothies and organic foods. You may need to change some meds or stop all your meds and/or slowly add or delete them. Most importantly keep praying and let God handle it for you-remember the foot prints in the sand-he will carry you through this. You and your family will be in my prayers.

It sounds like you have a virus. You may want to run some kind of spyware software to get rid of it.

It took 8 mths of being symptomatic in 2010 to be diagnosed by a TTT and QSART but I really believe it started after November 2005 when I had my gall bladder out. I never was right after that and had symptoms on & off until 2010 when I got the flu real bad and spiraled down hill after that to passing out in November and being hospitalized. It has been challenging to say the least since. I just take it one day at a time.

Hugs & prayers to you both. Good luck and hopefully you will have good news to share.

I feel your pain. The other day on my way home from work on the Ohio Turnpike, I made a stop in the service plaza to go to the bathroom. Being on Midodrine and keeping hydrated, I need to stay close to the bathroom. I was coming out of the bathroom and headed to go out of the plaza. I always use the handicapped entrance because I am slow to walk and there is a bench just inside the door which I have had to use on several occasions. I hit the button and low & behold a man holding a cell phone came through the door right into my face and yelled at me, "You don't look handicapped." He than flew past me and headed off in another direction. I just stood there, stunned and with tears running down my face. Another gentleman said to me, "How dare he say that to you. Are you are right?" I composed myself and thanked the gentleman for being concerned. I held my head high and walked out to my car that was parked in a handicap spot-I have a placard. It is sad that we a judged by the way we look outwardly yet dying inside. Hugs to you and all for what we endure with this disease.

Hi, Sorry you are having headaches with Midodrine. I started on 5mg 3xday and than increased to 7.5mg 3xday & prn if I am going to be up & out late as it seemed I built up a tolerance to the lower dose. I don't get the headaches, but other side effects like itchy head, goose bumps, urinary frequency & urgency, & parathesia. The benefits of being able to walk and do little things outweigh the side effects. I also take Mestinon 60mg 3xday inbetween the Midodrine. You may need to try something else if it is not working or even add another medication. Good luck with finding what works for you.

Welcome Knit, I wasn't able to take Florinef 0.1mg-too many side effects. I tried for 3 weeks when I was 1st diagnosed and felt I was getting worse instead of better. I was also taking Vitamin supplements: B, C, multivitamin & D. I actually felt better once I stopped the Florinef. I didn't stop the Vitamins. I was put on Mestinon followed by Midodrine which along with other treatments got me back on my feet. I am still taking the Vitamins. It took almost 21/2 months and has been a work in progress. I have good and bad days taking each one at a time. I am thankful to have some quality of life. Good luck, again welcome to the best forum and keep us posted

Hi Pulp, Welcome to the best forum for support, love and lots of knowledge to help you find a diagnosis. I do hope you get the answer you are looking for from the BP/pulse measurement. If you don't, I would press for more tests like a tilt table test, QSART, etc...What state are you in? There are alot of good references of doctors on this forum. Good luck and keep us posted. Hugs to you

Sending much support and many many hugs to you. Hang in there. It is always darkest before the dawn. Let God carry you. PM or email me anytime.