mwise

Hi Redoctor, I was not able to tolerate the Florinef that is why I was put on Midodrine & Mestinon. I have seen alot of folks here on just Florinef or Florinef & Midodrine or just Midodrine &/or nothing. It seems we all tolerate the medications differently I did not see much change with my heart rate from being on the Midodrine and Mestinon. It runs anywhere from 80s-100s. The medications are definitely helping to keep my blood pressure up during the day. Upon rising in the morning and standing for 3 minutes, my blood pressure is around 60/40. Once on the medications, it goes up to around 90s/70s. I find when I take sitting or lying, it is around 120s/80s. I try to take my blood pressure same time in the morning with the same arm without my medications and during day I pick around 11am to take it again using the same arm. I am a nurse for 30+years and taking your blood pressure and heart rate to get consistent & accurate readings/findings should be done using the same arm/wrist and same time of day each day. Changes in these can occur from medications, activity, eating, drinking, using different arms, taking it at different times, etc... You just may have to do some medication adjustments-Good luck

Hi PetuniasMom, I am a nurse for 30+ years and have Orthostatic Hypotension Dysautonomia-Autonomic Neuropathy. I was diagnosed from having an abnormal Tilt Table Test and QSART Test along with some abnormal labs. I am taking both Midodrine 5mg 3xday & Mestinon 60mg 3xday. I take the Midodrine in-between the Mestinon. I take it 7am-12pm-5pm and adjust the times based upon what I am doing for the day. If I know I am going to be out later in the evening, I may take them later & spread the dosage time farther apart. You should always take the blood pressure in the same arm & same time daily. Blood pressure can vary with activity such as walking, time of day, which arm is used, eating, drinking, etc...I would recommend you give her the medication as prescribed. Midodrine does not stay in the system. It usually peaks in 2-21/2 hours. That is when I get the side effects itchy head, urinary frequency, goose bumps & skin crawling. The benefits of being able to walk and do activities out way the side effects. Hope this helps

Hi 718Mom, I was unable to tolerate Florinef. I do take Midodrine 5mg 3xday along with Mestinon 60mg 3xday. I take the Midodrine in-between the Mestinon. I spread the Midodrine dosage out 7am-12pm-5pm and adjust the times depending on what I am doing for the day. I feel it peeking with itchy head, goose bumps, skin crawling & urinary frequency about 2-21/2 hours into the dose. The benefits of walking and being able to do things out way the side effects. Prior to taking Midodrine & Mestinon, I was bed, couch & chair bound. Early mornings I am weak upon rising with a low blood pressure-60/40 before I take the Midodrine, Mid mornings & afternoons are my best times on the medications. By the end of day-after 7pm, I am ready to rest. I pretty much hit the couch by 8pm. Like I said, I adjust the Medications if I plan to be out later in the evening. I would suggest taking a lower dose of Midodrine 2.5mg or 1.25mg. They are scorable/able to cut and usually have 1line on them to score/cut in half. Good Luck

Hi Redoctor, I take Midodrine 5mg 3xday along with Mestinon 60mg 3xday. I take the Midodrine in-between the Mestinon. I spread the Midodrine dosage out 7am-12pm-5pm and adjust the times depending on what I am doing for the day. I feel it peeking with itchy head, goose bumps, skin crawling & urinary frequency about 2-21/2 hours into the dose. The benefits of walking and being able to do things out way the side effects. I have seen no change-constriction in my veins. Prior to taking Midodrine & Mestinon, I was bed, couch & chair bound. Early mornings I am weak upon rising with a low blood pressure before I take the Midodrine, Mid mornings & afternoons are my best times on the medications. By the end of day-after 7pm, I am ready to rest. I pretty much hit the couch by 8pm. Like I said, I adjust the Medications if I plan to be out later in the evening. Hope this helps

Hi Brynne, Welcome to the best forum and loving support family. I like you and others felt the same way about using a Wheelchair and a Rollator Walker (Walker with a Seat). It is so worth using them and being able to have some normalcy in life. When I can't just walk short distances or know I am going to be out for long periods such as going to my twin 16 yr old daughters' school activities, I use the Wheelchair. I use the Rollator Walker around the house, at work and at the mall. Yes, I go to the mall with my daughters and their friends-they actually find the Rollator Walker Cool and think I am sooo cute pushing my Walker. People are very accommodating, helpful and not judgemental. You can also decorate your Wheelchair & Walker to look pretty rad. I say discuss it with your dad and see if you can get a prescription from a doctor for both as some insurances will pay for them. You shared that you are feeling sicker than ever. What treatment modalities has your doctor prescribed for you? Any salt loading, support hose, vitamins, etc... Are you taking any medication for your dysautonomia? This is the best place for a lot of love and support. A great big HUG to you

Naomi, A great big HUG is sent to you. I feel your pain and frustration. We have all been there and there are days I am still there, but with this great Dinet family-I get through the days. Just take each day one second at a time and try to find something good in it. That is what I do no matter how I feel-which is up & down every waking moment of the day. Hang in there, we all love you

Sending a great big HUG to you Lieze! We all have the tendency to feel sorry and get angry at our selves when things are going badly. That is human nature and ok to feel this way. I probably do it once a day or more. LOL:P I have said the same thing about wanting to die in front of my children especially when I was bed bound and extremely symptomatic. I felt horrible and regretted saying it because my daughters were begging me not to die and please live. They didn't care if i was bed bound just wanted their mother around for them. I decided right than & there I would take a different approach, a positive attitude toward my illness. I would try to set a goal whether eating one more bit of food, drinking one more sip of fluids for hydrating, sitting up one more minute,etc...and enjoy each second of the day. I also made a promise that I would share how I was feeling with them everyday. If I was feeling bad-i would tell them-mommy is having a bad time and asked them to help make me feel better. We actually made it a fun time to feel better. So hang in there and let your son make you feel better. That unconditional love has a way of healing.

Does your tablets have a line or two on them? If they do, they are scoreable-can be cut in half and/or fourths. My Midodrine has one line so it can be cut in half. They are 2.5mg tablets and can be cut in half to 1.25mg. I am actually on 5mg 3xday and space them 7am-12p (noon)-5pm and adjust accordingly with when I get up in the morning and if I am going to be out late in the evening. I do experience the goose bumps, parathesis, urinary frequency and itchy head especially about 2-2 &1/2 hours into the dose. The benefits of being able to walk, work & enjoy some what of a normal life out way the side effects. Good luck

Hugs to all of you who have had to have leave a job you all loved and shame on the employer who can't see the value in us who struggle with a disease that we all don't want to have other than a normal life. I also was on short term disability-off of work for about 3 months and was fortunate to return to work full time. I also worked about a year before I literally crashed and burned very symptomatic. I can say at first, it was difficult being back to work at a full time pace. I do have a desk job, but like many of you, the work load is immense and I am in middle management and get pressure from both ways. I pray allot and pace myself. I believe that God knows how much we can take and when he says I have had enough, than I will do what has to be done. So don't be too hard on yourself for leaving a job or returning to work because I believe you will know when the timing is right to get back to work or not-maybe do something else. Kudos to the DINET family-best support system in the world-Love to you all for keeping me on the straight & narrow path.

Hi Redoctor, Did the Cardiologist do a tilt table test? I am in agreement with the others-this will diagnose Orthostatic Hypotension which is a significant drop in Bp (20-30) from lying/sitting to standing for 3 minutes. I can go from 130/80 lying/sitting to 70/50 standing for 3 minutes, which I just experienced last week at my Neurologist's office. I had a positive tilt table test along with an abnormal QSART which gave me my diagnosis. I am on both Mestinon & Midodrine for it. I wasn't able to tolerate Florinef-like you I had terrible headaches along with extreme fatigue & weakness, high anxiety levels, my bp didn't go up & my heart rate was racing all the time. I would see if you can't get the Cardiologist to order a tilt table test or make a referral to a Neuorologist or someone who specializes in Dysautonomia. I live in Ohio and would recommend Dr. Shields (My Neurologist) at the Cleveland Clinic and/or Dr. Blair Grubb (Beth his NP)-Toledo Medical Center. Hope this helps.

Hi Lieze, I was hoping that the Stonyfield products & smoothies would have been an answer for you:( So if I am understanding, it is the ingredients found in corn that affects you? Have you tried process of elimination with each ingredient? I know this could be difficult, but maybe worth a try? I can empathize with you because I am still working on finding foods that I can eat without being symptomatic. I do take Domperidone 20mg (I get it from Canada) before meals & at bedtime to help with nausea & digestion/motility. That may be another option for you. Unfortunately, you can't get it in the US because the FDA pulled it, but my Cleveland GI doctors send a prescription to Canada so I can get it. It really calmed my stomach down. They tried me on both Reglan and Erythromycin, which neither worked. But the Domperidone was the magic fix. Will keep praying for you to find the right foods and drinks to work for you:)

Reen & Rizz, I like the cauterization idea. My eye doctor did mention it, but doesn't want to go that route yet for me. He thinks I will have problems down the road with it. I wish he would reconsider because I am seeing no benefit from the Restasis. I don't like crying all the time LOL. I am going to keep on him about it. Thanks

Hi Lieze, Have you tried Stonyfield Products & Smoothies? I drink these and just checked the bottle and I see no corn in them. They are USDA approved & Organic. I know Giant Eagle & Trader Joes carry them. I could not tolerate Ensure at all. I drink these with no problem. Without these smoothies, I would have needed a peg tube placed with tube feedings. They helped prevent me from going that route. I have to eat Organic foods too. I have Gastroparesis & Diverticulitis and am on a low fat /low fiber diet. I have done like you read labels and process of elimination with foods. As for going out to restaurants, I call ahead to see what they have that I may be able to eat. I ask where their meat comes from-Organic or not, etc...One restaurant that is very accommodating is Red Lobster. I actually brought my own fat free sour cream and I can't believe its butter and they heated the butter for me to have with a Lobster Tail. I had steamed broccoli with a plain baked potato that I was able to put my own butter & sour cream on it. I also had them substitute saltine crackers for their biscuits. I had them make me a fruit smoothie to have to drink. Like you, I have worked with a Dietician, get products from a local health food store and buy on-line. Good luck and hopefully you will find a balance soon.

I am with the others who have plugs-Go for them. They are great. I had a plug in my left eye which worked well until I lost part of it and had the rest removed. The eye doctor re-attempted to replace my plug, even adjusted size and unfortunately was unable to do so. I now use Restasis, which doesn't work hardly at all. I would love to be able to have the plug back in because it worked so well. I say Go for it.

Ok you Youngins, Us Seniors also have this problem too-LOL. Just learn to order a drink or have it in your hand before anyone gives you a chance to know what you are really drinking. Substitute with non-alcoholic beer, a plain coke, a virgin bloody Mary-get lots of sodium, etc. Don't hesitate to tell them you are on medication-usually that puts an end to it. One other suggestion is try to find a drink by process of elimination that may agree with you and not cause any symptoms. I drink a watered down glass of wine (Pinot Noir) -1 glass on holidays & occasion, sip it for a very long time and it seems to passify everyone. Hope this helps.

I salt load with drinks and anything salty all day long and yes I do salt load the latest around 9-930pm at night. The rest of the time I just load with plain water throughout the night to keep my blood pressure up. I also salt load before I bathe in the morning along with taking vitamins and Midodrine. I find this works best for me to get going for the day.

I take Midodrine 5mg 3xday spacing it between 4-5 hours apart with Mestinon 60mg 3xday in between. I have taken Midodrine at later times even after 6pm if I know I am going to be up late or out at a movie to help sustain me upright. I know when Midodrine is peaking about 21/2hours in to the dose with itchy head, goose bumps, skin crawling and urinary frequency. I also know when it is wearing off and have never experienced any cumulative effects. I take it even if I am lying down, but awake. I didn't see any difference and still have the same side effects. Without Midodrine, I could hardly walk and did very little activities when just on Mestinon. I pretty much stayed at home and was couch bound. When Midodrine was added, I began to be able to walk longer distances without a rollator walker or a wheelchair, started to do more little chores around the house, actually grocery shop (pick down times at stores) and returned to work. I do have a desk job, but have to walk some distance to restrooms and other areas in the office. I do salt load through out the day and wear support stockings along with taking vitamins and supplements. I would do what ever works best for your son. Good luck.

Hi Sarah4, I have been on both the Mestinon and Midodrine since January 2011. I take the Mestinon 9am 3 pm & 9pm in-between the Midodrine. I feel it helps to keep the balance when I know the Midodrine starts wearing off with my BP staying up along with keeping me from getting tired/fatigued. I take the Midodrine spaced 5 hours apart. I can tell when the Midodrine starts peeking because the side effects with itchy head, etc...kick into over drive. I can also tell after 4 hours when the Midodrine starts to wear off. I think the combination of both sustains me with activities of daily living such as walking, doing little chores, etc...I also have had atrophy of my muscles from inactivity and also feel the Mestinon helped with muscle strenghtening along with taking away nausea and helping with motility to get my bowels moving again. When I was 1st started on Mestinon itself, I saw my BP increase a little along with less tiredness/fatigue, but adding the Midodrine, I seen a significant change in me going from pretty much bed, chair & couch bound to being able to walk and doing little things around the house-running the vacuum cleaner, washing clothes, etc...Do I have days that I don't feel good-fatigued/tired to the point of laying down doing nothing and resting the day on both the medications-yes, but it is usually because I set goals, accomplish them and try to do more activities that I literally exhaust myself. My Neurologists at Cleveland Clinic warned me also that I would have 3-4 days a month that I may not feel good and expect to rest even on the Medications. I ask specifically why and they said you will try to push yourself more than you should and it will catch up with you. And truth be told-I do have those days and learn to rest and take each day as it comes whether good or bad. I do know it was because of the Mestinon, Midodrine, a lot of prayers-I believe in miracles and help from family and friends that I have some quality of life back again.

Great big hug & more to you Lieze! Glad to hear you are getting some help from the parents and you are resting and eating. I am with many of the others-let the kids help too. As for hubby, he does have his issues with being bi-polar (sounds like in maniac phase). I would leave him be and hopefully he will work through this phase himself. Will keep you and all your family in our prayers. A couple of ideas for calories: Try Stonyfield Products-they have smoothies & yogurt and are organic! You can find their products at Giant Eagle and Trader Joes. Actually Trader Joes yogurt brand is made by Stonyfield. I have even seen their Products at Wal Mart-yogurt. I am sure there are other stores that may carry these products. Just ask your local grocery stores to see if they can get it. It is usually found in the dairy section. On-line shopping is great especially looking for organic, gluten and wheat free products. Just google any of those words and wow lots of sites out there. Again, lots of hugs & love to you all. Hang in there and remember we are all here for you:)

Midodrine was the drug for me. Without it, I was bed, wheel chair & couch bound. With it, I can walk and drive. I take Midodrine 5mg 3xday along with Mestinon 60mg 3xday. I do get side effects with the Midodrine; itchy scalp, parathesis-skin crawling, goose bumps, feeling cold and occasional heart pounding for 5 seconds. But the benefits out way the side effects. I also can tell when it starts wearing off. I do take the Mestinon in between the Midodrine. I think they help keep me in balance during the day. Like many have shared, everyone reacts differently to meds. Feel free to email or pm me with questions.

I am on both Mestinon 60mg 3xday along with Midodrine 5mg 3xday. I was started 1st on Florinef alone and had horrible reactions and was taken off of it. Next, I was started on Mestinon which slowly/slightly increased my blood pressure but really relieved my nausea, feeling bloated and helped with my constipation. About 21/2 weeks later, my Cleveland Clinic Neurologist added Midodrine along with the Mestinon which made a world of difference within 2 weeks of being on both for me. I went from being bed, wheel chair & couch bound to being able to walk with a Rollator Walker to walking mostly without the Walker now longer distances, returned to work (I do have a desk job) and doing little chores around the house. I had no side effects from the Mestinon, but do have side effects from the Midodrine-itchy head, skin crawls, goose bumps, feeling cold, parathesia n now & than heart pounds for about 5 seconds. The benefits out way the side effects. I hope the combination will work for you as well as it has for me. Feel free to email or pm me with questions:)

I was diagnosed with Autonomic Neuropathy by Cleveland Clinic Neuro doctors from a QSART, Tilt-Table and Gastric Tests. The following Tests will help with the diagnosis of Autonomic Neuropathy (straight from Mayo Clinic): Breathing tests. These tests measure how your heart rate and blood pressure respond to breathing exercises such as the Valsalva maneuver, in which you exhale forcibly.<LI>Tilt-table test. This test monitors how your blood pressure and heart rate respond to changes in posture and position, simulating what occurs when you stand up after lying down. You lie flat on a table, which is then tilted to raise the upper part of your body. Normally, your body compensates for the drop in blood pressure that occurs when you stand up by narrowing your blood vessels and increasing your heart rate. This response may be slowed or abnormal if you have autonomic neuropathy.<LI>Gastrointestinal tests. Gastric-emptying tests are the most common tests to check for slowed movement of food through your system, delayed emptying of the stomach and other abnormalities. The testing can take various forms. One test may measure the rate at which food leaves your stomach, while another checks how well your stomach muscles relax after you eat. These tests are usually done by a doctor who specializes in digestive disorders (gastroenterologist).<LI>Quantitative sudomotor axon reflex test (QSART). This test evaluates how the nerves that regulate your sweat glands respond to stimulation. A small electrical current passes through four capsules placed on your forearm, foot and leg, while a computer analyzes how your nerves and sweat glands react. You may feel warmth or a tingling sensation during the test.<LI>Thermoregulatory sweat test. During this test, you're coated with a powder that changes color when you sweat. You then enter a chamber with slowly increasing temperature, which will eventually make you perspire. Digital photos document the results. Your sweat pattern may help confirm a diagnosis of autonomic neuropathy or other causes for decreased or increased sweating.<LI>Urinalysis and bladder function (urodynamic) tests. If you have bladder or urinary symptoms, a series of urine tests can evaluate bladder function.<LI>Ultrasound. If you have bladder symptoms, your doctor may do an ultrasound, in which high-frequency sound waves create an image of the bladder and other parts of the urinary tract. Hope this helps.

Try Stonyfield Products-Organic Yogurt Smoothies and Products. You can buy them at Giant Eagle, Trader Joes and I am sure there may be other stores in your area that carry them. They don't have any corn and low in fat content. You can also try a local health store that may carry Organic Products.

I was not able to take Florinef. I do take Midodrine 5mg 3xday along with Mestinon 60mg 3xday. I do experience the side effects with Midodrine: itchy head, goose bumps, and skin crawling along with racing/pounding heart for about 15-30 seconds and feeling cold, but the benefits of being able to walk and work again out way the side effects. I was 1st placed on Florinef-alone and became weaker, more fatigued, had chest discomfort and very anxious. I went off of it and was started on Mestinon 60mg 3xday with some improvement. It wasn't until I started on the Midodrine 5mg 3xday along with the Mestinon that I saw improvement with stamina and being able to walk without being short of breath in a bout a weeks time. I have continued to gain stamina and endurance the longer on them both. Good luck and keep us posted.

I take Midodrine 5mg 3xday along with Mestinon 60mg 3xday. My blood pressure fluctuates from 90s/70s to 140s/100s through out the day. Without the Midodrine and Mestinon, I was basically bed, chair & couch bound. Being on it, I am able to work-I do have a desk job and able to walk again with & without my rollator walker & wheelchair. I have some quality of life back. I don't stand for extended periods of time, because my neurologist told me not too. I can tell when I stand to long and my pressure starts to drop. Very in tune with my body & symptoms. I am just glad to be able to walk again. I am in agreement with others, I wouldn't just self dose, I would ask the doctors to prescribe a recommended dose. Good luck.