katcanny Posted February 16, 2017 Report Share Posted February 16, 2017 Hello to all the lovely members! Just after some experiences people have had with midrodine? I finally saw my POTS specialist today and he put he straight on it would be even wait the 4 weeks for paperwork to come through I had to travel to go and get it from a special pharmacy. So I am excited and hesitant to try this but I really need something to help with this dizziness! My blood pressure is all over the place down, up, normal lol! It's very frustrating so this is the first try to get at leasty dizziness under control! Any hints or tips no medical advice! For taking this med ? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 16, 2017 Report Share Posted February 16, 2017 I'm curious, you say your bp is all over the place, Does that include high? I was under the impression that medicine is to increase bp, i dont know why is why I'm asking though lol Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 16, 2017 Author Report Share Posted February 16, 2017 It is to try and stop my dizziness so I'm guessing that my blood pressure is dropping the more or longer I'm upright they did my bp laying 5 times and then standing 5 times continuously so I'm guessing that's why? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 16, 2017 Report Share Posted February 16, 2017 Hi Cat. I'm glad you finally got something to try so that they can start working on your symptoms. My experience with that med was horrible, but it works for some people. It gave me headaches so bad that I ended up in bed, curled up in a ball, holding my head with my hands. I couldn't watch tv, eat, talk to anybody or be around lights. I couldn't even think straight to realize it was the med that was causing it. I was like that for a week before I figured it out. Then 8 years later I forgot it was that particular med that did it to me, and I did it again! It is a med you have to try before they can progress you to other things or insurance won't pay. I don't want to discourage you. That med works fine and has helped a lot of people. I just didn't want you to lay there like me thinking that your blinding headache was something else if that happens to you. And I certainly don't recommend doing it twice! I'll keep my fingers crossed for you. Kim Quote Link to comment Share on other sites More sharing options...
Jan Posted February 16, 2017 Report Share Posted February 16, 2017 My experience with midrodine was similar to Kim. After a few days, I ended up in ER getting a shot of Demoral the head ache was so bad. I wish I had stopped taking it sooner. Be prepared for a tightness and tingling in the scalp. That is normal but even if you know it's coming, it can be really shocking. Literally shocking in that if felt like electrodes on my head. I hope those who have had positive results post on here because some people swear by it. I have been on Florinef now for years and it seems to keep me at a pretty even BP reading day and night. Quote Link to comment Share on other sites More sharing options...
corina Posted February 16, 2017 Report Share Posted February 16, 2017 I had the tingling in my scalp. Other than that there were no side effects. Unfortunately it didn't do much for me. I hope you will have good results trying this med! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted February 16, 2017 Report Share Posted February 16, 2017 Hi I have been on midodrine for almost a year , my BP was very low 80/40 and I was diagnoised with vaso depressor syncope and POTS. I had to tritate up to 7.5 mg before I really saw the benefits to a point it made a difference and I really saw an improvement in the severity of symptons . Midodrine has raised my BP during the day and has stopped the dizziness and generally has improved my quality of life along with other lifestyle changes. It hasn't helped the tachycardia that much my resting heart rate is about 58 to 63 and when up and about HR is about 100 -125 but apart from making me feel fatigued the pounding heart doesn't bother me , think I have had it for so long it doesn't cause me any concern just can be annoying! I still have presyncope and syncope attacks but where they were a daily occurrence before midodrine bad ones happen perhaps once a month now, unless I push myself too hard or I am not mindful of my triggers! I have not had any side effects at all unlike florinef which not only made me feel ghastly made me put on weight which I am still struggling to get rid of! I wish you luck on this med I hope it works as well for you as it has me ! It's has not been a miracle cure for me but I am on the whole more functional on a daily basis. I may also add that it has been a very slow improvement and it has not helped my vision or muscle and joint pain at all . But I am happy for any reduction of sympton severity ! Best wishes! Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 16, 2017 Author Report Share Posted February 16, 2017 So I am on both now the midrodine and florinef so I have taken my first tablet 30 minutes ago and I just have goosebumps on and off but I get them quite often anyway, so thinking I may just be paranoid a little I hate trying new medication! My scalp is tingly but that is sort of normal for me too! Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 17, 2017 Report Share Posted February 17, 2017 I have panic attacks when i take new medications, ironically I have xanax that i was recently prescribed a few weeks ago that im still to anxious to try, how ironic haha. Good luck on your new meds. I hope you feel better! Quote Link to comment Share on other sites More sharing options...
TaraMc9 Posted February 17, 2017 Report Share Posted February 17, 2017 I can't function without my Midodrine. My bp is all over the place too, so my doctor just has me track it & adjust my dose up & down. I had some scalp tingling for the first few weeks, but it went away. I've been on 10mg 3x/day for about 15 years with no problems. The other thing that I would suggest is that if it doesn't work for you, try a different generic. Most people do well on the Mylan Midodrine, but it didn't work at all for me. I switched to a different brand of generic & it worked great. Good luck!! Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 17, 2017 Author Report Share Posted February 17, 2017 So update on the midrodine! I have goosebumps sweating and head tingles feels so weird and a pushing feeling behind one eye but that goes away after about 30 minutes! Can't tell if it's helping my dizziness because it has made me quite tired but I know I can't lay down so I'm sitting upright nearly falling asleep ? can't win! Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 17, 2017 Author Report Share Posted February 17, 2017 Lol midodrine auto correct keeps making me spell it wrong! Quote Link to comment Share on other sites More sharing options...
Lexi24 Posted February 17, 2017 Report Share Posted February 17, 2017 I've been on midodrine for 8 years. It's a miracle drug for me! I have hypotension that drops even lower with position changes. Most of my side effects went away after a few months - my body just needed time to adjust. I still get restless legs and goosebumps occasionally. I'd say give it some time and keep track of your BP when you're experiencing symptoms. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted February 17, 2017 Report Share Posted February 17, 2017 I've been on midodrine several years. Only have side effects when first starting, restarting, or increasing the dose. Hope yours go away soon! Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 17, 2017 Author Report Share Posted February 17, 2017 thank you everybody for taking the time to tell me your experiences on this med! I survived my first day.. now on to the second I have woken with a slight headache but my bp was normal I just think I stressed a lot yesterday! Thank you for the tips I will definitely keep taking it and fingers crossed these side effects lessen and I start to benefit from this med! I will keep everyone posted! And please anyone else with any experiences please post I love hearing what members have to say ❤️ Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted February 18, 2017 Report Share Posted February 18, 2017 you sound like you're off to a good start and an improvement, that's awesome! Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 18, 2017 Author Report Share Posted February 18, 2017 Thanks for all the well wishes this support from people who understand is so important and makes this a lot less of a lonely and scary process! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 18, 2017 Report Share Posted February 18, 2017 Ah new Meds.... Who hasn't been there done that? Glad you are handling the speed bumps with the Midodrine. Keep us posted. 3 cheers for you!!! Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 18, 2017 Author Report Share Posted February 18, 2017 So I have had a headache since last night and woke up with it again I'm not sure if it's the midodrine causing it or if I'm just adjusting and have a headache because of it? I am still in bed and I'm not sure if I should take it today or skip it, I'm not sure if I'm allowed to skip it I didn't ask! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 18, 2017 Report Share Posted February 18, 2017 Oh, no! I don't know if you can skip or not. I can tell you that when my headaches started, it took 36-48 of no meds to make it go away. It doesn't necessarily mean that is what is happening to you though. I hope we haven't told you our stories and made you so apprehensive that we (I) caused the headache. Can you call the doctor and ask what you should do? Can you stay on it and make it until Monday when they should be open? Maybe a pharmacist can advise you as to the risks of stopping or skipping doses if your doctor isn't available. I feel for you. These things seem to happen most often on the weekends when help isn't as readily available. Keep us posted. Kim Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 19, 2017 Author Report Share Posted February 19, 2017 Thanks Kim, as ive been up and took my meds it is easing slightly, I've had worst headaches so trying to get through not thinking about it too much and I'm due for more panadol in 10 minutes. I'll see my gp tomorrow if it doesn't go away ! my blood pressure drops once the meds have worn off maybe that's why I'm getting the headaches? Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 21, 2017 Author Report Share Posted February 21, 2017 Update on the midodrine! So after 4 days on this drug was feeling out of it and noticed since I had to buy a blood pressure machine to take notes for my specialist that my blood pressure dropped even more while taking it! This morning I woke up with a rash over my chest, neck and face that look like pimples on a 14 year old girl going through puberty and shortness of breath with dizziness so I didn't take my midodrine this morning and went straight to my gp! He was no help had no idea of this drug and told me to speak to my specialist.. I rang my specialist who I have only met once he said I may have had a reaction and to stop the midodrine for a week and start again! My heart rate was 54-60 just watching tv last night I think I had a bad reaction and I don't want to try it again in a week! Anyone else had similar reaction to this drug? And if so what is the next drug you had to try for low blood pressure? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 21, 2017 Report Share Posted February 21, 2017 They have me on a beta blocker to slow my heart rate. They say for me, once my heart gets going too fast, it causes my BP to drop. I don't know if this is the case for you. Did they do a blood draw and check norepinephrine levels in you? It is usually done after standing for 10 minutes, often as part of a tilt table test. My next med was Northera, but it isn't an option for everyone. It increases norepinephrine - at least, that is my understanding. I'm not a medical person. My doctor said that everyone can't take it because it can be dangerous to put too much norepinephrine in your body. They gave me a serious conversation about monitoring my BP and tracking symptoms before putting me on it. It honestly made me think twice about going on it, but I did. I'm glad I did and it made a huge difference for almost a year. I have recently gone back off of it and will be seeing my cardiologists soon. I guess it is possible your reaction to the med could be incidental and not because of it, but it is HIGHLY suspect. If it goes away and then comes back, that is a pretty good test. My doctors do that to me too. Sorry things aren't going smoothly with Midodrine. Relax for a week and don't think about it, then try it again. Nothing about this disease is for sissies. Keep us posted. Kim Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted February 21, 2017 Report Share Posted February 21, 2017 Oh, no - sorry to hear about the midodrine reaction! Treatment of our conditions includes so much trial and error, and like Kim mentioned it's quite difficult. Have you tried Florinef yet? It basically works by helping your kidneys to retain sodium and therefore increases blood volume. http://www.dinet.org/content/information-resources/pots/pots-what-helps-r100/ Hope your feeling better today Quote Link to comment Share on other sites More sharing options...
katcanny Posted February 21, 2017 Author Report Share Posted February 21, 2017 Thank for the kind words Kim and Sarah! I haven't had a tilt table test I had the poor mans test done throughout hospital for 5 days consistently. So I haven't had any blood tests like that done? Other than my electrolytes because I am on florinef and I am on the maximum amount. I can handle that med it only gave me side effects for the first dose so I'm glad for that but nothing is doing much for me bp. I went to ER to get checked yesterday for my reaction because I didn't want it to become worst during the night and the doc there even had to look up midodrine and he said I am one of the lucky 1 in 5 people that get the rare side effects! Lucky me! Lol! And then he sent me home! So I am still feeling pretty crappy both physically and emotionally I am worn out so is my partner and mum and son. I need something to help otherwise I am going to lose my job and possibly my partner as this has been a very hard adjustment for us. Is there any home remedies that have worked for people I am willing to try anything and everything at this point! Quote Link to comment Share on other sites More sharing options...
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