I have been on Midodrine for a few weeks. My dose was increased from 5mg three times a day to 10 mg three times a day about 10 days ago. I was a little more fatigued last week than I had been, and I also had a few spells where I had the beginning of a dizzy spell, but was able to stop it, or it just stopped itself (I had a summer of dizzy spells as a kid, so I am familiar with how they feel as they are coming on). I went to a store Saturday with my daughter, and became extremely lightheaded, and tried to work through it, but finally had to sit down on some patio furniture. Fortunately my husband had dropped us off and was close by running errands, because I had to have him come back to get us. Sitting didn’t help, but I was able to use the shopping cart to make it through checkout and outside. I didn’t pass out, but it felt like it was close. I haven’t had that bad of a spell in about a month, and was a little discouraged, because I thought the medicine, compression stockings, salt, and 4 liters of fluid a day were helping some. I still have rocking when I walk/jog, and feel lightheaded in any upright position, but I have been able to tolerate it.
I am not sure if this is due to the change in my medication, the wonderful Georgia heat/humidity, or just a minor set-back. Someone at work, possibly two someones, has the Coxsackie virus (hand, foot, mouth virus), and there has been a couple/flu, so I am guessing I could be affected by that also.
So, my question is...what kind of experiences/side effects have other people had with Midodrine?
Are there any medications that you have had success with? I am going to try licorice root to see if it will help. I have a follow up with my GP in a week, so hopefully she will have some ideas to help the lightheadedness. I am not very patient, so this has been a rough five months for me.
No, I just have pretty much learned to live with the symptoms I get with my orthostatic intolerance. But there are others on the forum who have found things that help and I hope they will respond to you as well!
My neurologist prescribed Midodrine, 5mg, 3x per day.... I took the first dose in the morning (maybe around 9 a.m.) and didn't experience any effects at all. The second dose was taken around 1 p.m. By 4:30 p.m. I was in the ambulance on my way to the ER~ :) Within an hour of taken the 2nd dose, I started getting strange, stabbing chest pains (much different than the chest pains I'm "used to"~), a "shooting" type pain in my left arm, dry mouth, my tongue felt thick, my throat and chest felt tight. My thoughts were in slllooowww motion & I physically couldn't talk right. My heart rate was about 120 & BP about 80/50. My skin was clammy & my skin and my lips were the same color which was a very pale shade of... well... pale. My mom & husband said my eyes were glassy & my eyelids were very heavy. The after-hours doc told my mom to get me to the ER asap because it sounded like a heart attack. I don't remember much until about 20 minutes into the 30 minute ambulance trip. I was "conscious" according to the medics but I don't recall any of it. The ER doc, although extremely thorough & super-concerned, was also self-admittingly, completely oblivious when it came to dysautonomia & midodrine. The tests didn't show any heart damage & my vitals were only slightly abnormal by that time so I was released. I was "alert & oriented" but I was absolutely, totally exhausted. My entire body, inside & out, from brain function to muscle movement, was completely depleted. I slept for approximately 16 hours. For the next 2 weeks, I felt the same exhaustion through my whole body. Ever since that incident (which occurred about 1 year ago- July, 2011), I've felt like my thought processes weren't quite right. Until I had gotten dysautonomia, I was a bright, multi-tasking over-achiever. The illness had definitely diminished my multi-tasking skills & limited most of my ambitions- But after the Midodrine incident, I've experienced a definitive decrease in maintaining focus, finding the right words, remembering common-place 'items' (like my social security number) and a particularly troubling problem with my immediate short-term memory (i.e. I can look at a number on a piece of paper & then look at a computer screen to type the number. I'll only be able to remember, say, the first 2 numbers- I used to be able to remember a 10 digit number if I had to!) The ER hadn't done any "brain" related tests nor have I had to have any MRI's or CAT scans since that incident. I've often times wondered if the drug caused something like a mini-stroke or something similar since it carries that warning about increased stroke risk.
My advice- stay away from Midodrine if at all possible!! The FDA even conducted an investigation on the drug & considered removing it from the market. I believe that the investigation has been settled at this time but the fact that they investigated in the 1st place is cause for concern in my mind. I'm not sure of all your symptoms, illnesses/complications, allergies, medications, etc, but here are a few things that have "sometimes" helped me (in my case, all of my symptoms including syncope, presyncope and the related dizziness/lightheadedness, can appear or disappear within a matter of minutes- That being said, these suggestions may help on one day & be completely ineffective the next~) As I'm sure you are well aware, every person & every dysautonomia is different so you should definitely ask a doc before you try any of these just to be safe~ :)
- First, try to evaluate what is actually causing your symptom at the time it's happening. For instance, if you're standing up and get lightheaded, try to remain standing while you take your blood pressure as you're experiencing the symptom (if this can be done safely, of course.) The same goes if you have a chest pain or feel like your heart's racing. Also, try to focus on any "other" symptoms that might be present that you might be overlooking. Using this method, I actually found that the assumption of Low BP being the reason I pass out, was only partially correct. I found 3 different reasons- Tachycardia OR Hypotension OR Blood Pooling~ By identifying any additional factors or symptoms & becoming familiar with them, you may be able to head-off or at least, shorten the time of an episode.
-Triggers: Over-exertion, anxiety, stress, heat and/or humidity (not just the weather- hot tubs, bathes, showers), excess sugar, bright lights, making fast movements (i.e. turning your head too quick), environmental fast movements (i.e. the scenery while driving), flashing lights (i.e. emergency vehicles, signs, TV, computer, etc.), heights, body position (i.e. standing, sitting, laying down, arms over your head, etc.) All of these can either provoke an episode or make a bad situation worse. However, these represent only a small % of the possible triggers. Do your best to stay vigilant as it may take time to reveal any hidden prompts~
- Caffeine - If you're not sensitive to it, caffeine, being a stimulant, can help with fatigue, bradycardia (slow heart rate) and occasionally, can help raise BP.(Of note, it can also lower blood sugar in some people.) Since stomach complications can often accompany dysautonomia, try to choose something that won't irritate your belly. (Coffee might be too harsh if you have a sensitive tummy~) I've found a few varieties of Sugar-free Energy Drinks to be effective. If you do choose energy drinks, make sure you check for ingredients that might be personally unacceptable to you. The one I like has a few B vitamins as well as so it helps a bit more than others with fatigue~
- Small Meals, Often - Smaller meals reduce the amount of blood needed for digestion in your abdomen which, in turn, can reduce tiredness & light-headedness after meals. In addition, if you're constantly and regularly "re-fueling", you prevent your body from entering 'starvation mode' which means your body should naturally store less fat from your food. You'll want to be sure you don't eat "more" throughout the day, than is normal for you- just "more often". (For instance, if you were a 'calorie counter' and normally ate 1500 calories in 3 meals per day- You would divide the 1500 calories over 5 or 6 meals, rather than 3~) Assuming you choose nutritious foods and assuming that you don't suffer from diabetes or related insulin-unstability, this method of eating offers a second benefit whereas it can help your body maintain a more consistent blood-sugar level. Glucose (blood sugar) is the only fuel that our brains use- Since glucose can't be "stored" by our brains, it depends on our blood to provide the required "fuel". Consistent blood sugar levels can result in more consistency in energy level and mood, as well as reducing your risk for diabetes, nerve damage, heart disease, etc. I always envision this concept like a gas line- If the "car" (brain) has a constant supply of "fuel" (glucose), it'll keep running normally- But if there are "air bubbles" (fluctuating blood sugar levels) in the line, the "car" (brain) may hesitate, stall or even refuse to start all together! (Not good when your brain won't start!! :)
- Ibuprofen - I take 800 mg of Ibuprofen, 30 minutes before my largest meal of the day (for me- this is normally my dinner). For me, this aids in both, reducing digestive issues and also, blood pooling in my abdomen. This is effective due to the short-term blood thinning properties of the drug. Thin blood, naturally moves more easily through your vascular system. When the blood is called to your abdomen to help with digestion after a meal, thinner blood is less likely to become "stuck" there- in turn, reducing digestive problems & postprandial hypotension~
I hope I was able to help you in some way & wish you the best of luck!! Please!! Feel free to respond or ask any questions, etc as I'm more than willing to share my own experiences or any information I have if it might help~ :)
Have you discussed your 800 mg of ibuprofen 30 minutes prior to eating your largest meal every day with your physician? This sounds like a dangerous practice to me. Not only with long term use can you increase your risk of things like a heart attack with ibuprofen, but it also is supposed to be taken with food, not prior to eating. You are increasing your risk for ulcerations and stomach irritation taking it 30 minutes prior to eating.
If your doctor is having you do this, I hope he/she is not having you do it for weeks on end due to the risks involved with ibuprofen and is also prescribing medication to try to protect your stomach lining. Sucralfate or Cytotec are a couple of medications prescribed by doctors to try to protect the stomach while taking prescribed high doses of ibuprofen and if one has GERD, medication for that a doctor would want a person to be faithfully taking as well.
Enterice coated over the counter fish oil or flaxseed oil capsules, generally taken with food, have mild anti-coagulant properties, though they don't, to my knowledge, raise your blood pressure like ibuprofen typically does. Also, ibuprofen is something to avoid if you have kidney disease.
Sorry to hear about your bad reaction. Other people have mentioned chest pain. I have handled Midodrine better than Pindolol and Fludrocortisone. I felt like I would never get better when I was about a week into taking them. I was sleeping very little, I had tremors that were getting scary, and I experienced motion sickness and nausea. I was so happy when I was told I could taper off of both of them.
I am feeling less fatigued today, and the lightheadedness hasn't been quite as scary. I keep hoping that I have rough patches because my body is trying to heal itself. I have had some symptoms improve or go away all together. My symptoms came out of the blue. I had an eventful year last year. My dad was in the hospital for seven weeks, and then passed away. The week my dad passed away, my mom was diagnosed with Alzheimer dementia. I was laid off, started a new job, my daughter fractured her nose, her eardrums ruptured, and then she split her lip open in a big way. That all happened between February and June. My summer was quiet, but then my daughter was diagnosed with aura visual disturbances, my transmission started showing signs of damage, I bought my first new car and financed for the first time, and then turned forty. There were a few other stressful periods last year I haven’t mentioned. I have no other underlying health issues that the doctors have found, so I am hopeful I can get through this, and then I will plan on not ever having surgery for the rest of my life.
Ibuprofen doesn't do well with my stomach, but I may try coffee with milk when I return to the office on Monday. Fortunately, I am already used to eating small meals throughout the day. I have never been one for eating three big meals a day. I haven’t found a pattern to my symptoms. I did notice that I became very lightheaded when we had someone in a car behind us with really loud music and it was making me vibrate. Once my husband got us away from them, I felt better. I am going to mention it to my GP and Chiropractor next week. I am hoping to find a way to heal my autonomic system, and not just treat the symptoms, which is what I think is approach of many doctors. Not because they don’t care, but because this is not viewed as a life or death illness, and they just don’t know what to do.
Wow, it was a very eventful year with plenty of stress for you... the death of a loved one, the Alzheimer's diagnosis of your mom, all the physically adverse events with your daughter, etc..
I was told about my P.O.T.S. that it generally comes out in the third decade of life.
It might be that the added stress with the blaring car was during a time when you already were having high levels of catecholamines from orthostatic intolerance dysautonomia... the nuts on the frosting so to speak.
If you have tachycardia with dysautonomia, caffeine is something the doctors generally will tell you to stay away from, because it can exacerbate the tachy.
I am a 31 year old female that has lived with my NCS since age 7, I also have Mitral Valve Prolapse. I have been on numerous different medications over the years and it all comes down to the same thing. There is no cure for this condition, its just a matter of control of the symptoms and triggers (provided you know what they are). My EP currently has had me on Midodrine-5mg 3x a day, Zebeta-5mg 2x a day, and flurdicortisone-1mg 1x a day. This cocktail of medications has actually seem to have done the trick better than any of the other treatments that I have had over the years. It has been 6 months since my last episode of lose of consciousness or severe dizziness (Still have a few weak episodes during any dehydration or heat but only feels like I need to slow down). Which is a total 180 degree turn around from the multiple episodes per week I was having. Unfortunately, there is still alot not know about this condition so all those of us that suffer from this condition can do is hope for a best control scenario. Sorry if this doesn't help much, trust me when I say I know how you feel.
Does the Forinef work, in your opinion?
Did it make you gain weigh?
They want to start me on a very low dose and I am scared but I am up to 100mg+ of MIDODRINE per day and the Dr does not like that I have to take that much just to function.
It did help with my dizzinessand regulated my bp but....I felt out if my mind while taking midrorine. I told my husband that at times I felt like I wasn't there like it's werid. Also my scalp tingled so much. My new cardiologist is starting me on flornief... I haven't taking it yet. I'm scared . Also no weight gain on midrodrine.
I struggled with Midodrine since last November. I tried from 2.5mg tid up to 10mg tid. It made me so fatigued, nauseous, etc etc. I started on Mestinon 60mg tid a couple months ago and I am feeling so much better. My daughter (25yrs) has POTS and has started using the Mestinon bid along with her Midodrine. She too has noticed the benefits. It takes about 3 solid weeks before you start to see the benefits so give it a solid trial. We both experienced muscle spasms, muscle weakness and slurred speech. These were scary, but I had already read a blog from a lady that has POTS and blogged about the three week trial and how she discovered the benefits far out weight the side effects. I agree with her. I rarely suffer any side effects now at all and am greatly benefiting from it. I love not being on the Midodrine. It just didn't work well for me. Neither did the fludrocortisone.
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