Can anyone please give me information regarding this drug in terms of actual use?
My son is 13 and tall for his age (6ft) but is slim. Does it have many side effects and if so, what are the main ones?
I have read about it but I know how different a drug can be when its used in practice.
If anyone can post me any useful info from there experiences of either taking it or giving it to their child I'd be really grateful.
Any advice or info for me to bear in mind would be great.
Thank you
Di xx
Hi
I have been on midodrine for 19 months now and it has made an amazing difference to my life.
Yes I have experienced some side effects such as tingling skin, mainly my scalp, but this is annoying at times but it also acts as a warning that my blood pressure is dropping rapidly which means I can do counter moves and be in a safe place.
The only other side effect I have is a loss of appetite but I just have to remind myself to eat regularly even if I do not want too.
Although I am an adult I am a secondary school teacher so would say to you and your son to ensure staff know he has to take medication and the times. As sometimes in a busy school day you do not always have time and the medication is not as effective.
I hope this helps
Nina
Thank you Nina for your kind reply. I was given a prescription from my sons consultant but told not to get the drug until he had his tilt table test performed first.
He had this on Monday 1st Dec and his heart stopped beating for 8 seconds. To say I was horrified and scared is an understatment. It came home to me the fact that I have ensured he is lying flat, and his pulse was slow-ish at 50 beats approx. if he was in a chair at school and left there until first aid help arrived (waiting for a minute or more to say 4minutes) my son would be critical or worse, (I can't put the word it frightens me to contemplate this).
The children's hospital kept him in for the day until the Registrar had spoken to his Consultant in the cardiac hospital 40 miles away. She is seeing him urgently on the 22nd Dec this month. I think I'll be asked to get the prescription and start the drug.
Until then I have kept him off school and we (school and I) are devising a care plan for him. I am off work and my GP is supporting me about my decision to keep my son off school.
I am hoping Midodrine will make a difference to hm as it has done for you and your quality of life. I must add his heart rate dropping is as a result of low blood pressure not a 'true' cardiac event (as PoTS would cause for example).
I am feeling guilty for keeping off school (he is missing school and his friends) and I feel I'm 'over reacting' somewhat.
That said, I have had to manage his symptoms since he was a toddler and was told he had 'febrile convulsions' then as his tests (ECG EEG and bloods scans) were normal I was sent home from numerous A&E visits, despite on going symptoms. (Plus black eyes, broken fingers, head injury concussion etc....)
I was told by my family and friends that I was an 'over anxious mum'. But I knew in my gut feeling that something was wrong. Even school didn't fully believe me until he started fainting in class and the playground.
Sorry this is long!! I'm am both relieved and scared, plus at times angry at how I have been fobbed off and disbelieved for over 11+ years.
Thank you again for your reply, and to anyone reading this any reassurance re my decision to keep my son off school would be appreciated.
I will be meeting with a Dr, school nurse and head of year next week as I've asked for an assistant one to one for him (until meds or whatever treatment his Consultant decides on the 22nd Dec) when he is back in school.
Also general awareness of what to do if he passes out.
Di x x
Hi
No problems at all. After my tilt table test I was signed off work for nearly 6 months which was awful but I was deemed too much of a risk to myself and my students understandably.
After 3 / 4 weeks on the medication I started to get back to normal (well less faints etc) but I understand how frightening it can be.
Have you the Stars information leaflet / advice for schools to hand in. I know my head and staff found that really useful. The one thing that works well to stop the fainting (I had same issue with heart) is counter movements such as squeezing hands into a fist, rising up and down on the balls of your feet. Plus if getting warning of a faint lie down and press feet against a wall as this allows the blood to flow round your body and therefore stops the faint.
I know I wouldn't be back in school or being able to live on my own if it wasn't for the medication as I suffered a number of horrific injuries whilst fainting.
I hope the meeting with school goes well and that your sons gets the right treatment
Nina
Hi Di I've been on it for a long time after finally getting a diagnosis after my tilt table test that was horrible never again!! The main side effects I tend to notice is the creepy crawly feeling across the scalp, may slightly increase headaches but I'm not totally sure its this drug as I'm on pregabalin to for FIBRO. Midoderine is amazing and has helped me gain a bit of sanity back in my life. The drug far out ways the side effects...here is to a better life to all people that suffer...hope this is a help Xx
Hi all,
Well so far so good.
Went to see my sons Consultant just before Christmas. His Consultant was so kind and started him on 2.5mg working upwards to making his symptoms less.
Started it last week at only 2.5mg twice a day and he feels a lot better!
So far no side effects.
I'm monitoring his blood pressure and keeping a diary for when he is reviewed again in 3 months time.
I can't thank you all enough for your kind suggestions, thoughts and real experiences. It has made a huge difference to me and reassured me so much.
I'll keep posting on here in case anyone else has experiences similar to mine and my son.
Thank you all again for your help.
Happy new year,
Much love
Di x x
Nothing is better than reading of our members' personal experiences of this drug but STARS does have an information sheet on Midodrine and if you would like to receive this, please email info@stars.org.uk and we will send you a copy.
Dear All,
Thank you so much for your replies.
Firstly Nina, I value your opinion as a professional teacher and your experiences of this condition.
I can plan and sort out my sons education and quality of life. It's a sense of relief to hear that my decision to keep him off school is a right one too! I am 99.9% sure but that niggling 0.1% was still there. I too felt he was at risk being at school and if his heart stopped and I had a phone call.... It was weighing that scenario up against him missing school for a few weeks (he's in year 9) then his life and safety come first.
Daftney, thank you too for sharing your experience of this drug. If a hair/scalp sensation is the worst of it I think we can cope with that, versus what we have to cope with now!!!
STARS, yes I will e-mail you for a fact sheet.
Thank you all for your kindness. This forum and support has helped me so much. I felt as if I was alone until I found this site.
Love Di x x x x
Hello Di,
I have been on Midodrine for about 5 or 6 years. I have also been placed on other medications so am not certain at times which drug causes which side effects. Over the years of self-monitoring though I have figured out which ones are from them. The biggest one I have had is the tingling of the skin- often from the scalp. This is something that I found got better over time (or maybe I became use to it). If I take it right before I fall asleep I become very drowsy after my nap or very spacy. I have found if I take it several hours prior to laying down its okay.
I totally understand being a mom and frightened for your son. As a 20 year old I have been through my share of hardships that come along with these types of conditions. I would suggest looking into ways to help out your son, for example allowing after school "play dates" or seeing if there is some form of video streaming (Skype etc) where he can be streamed into class. Always follow your gut, it's always worth it.
I was personally pulled from this drug at one period and found my condition worsened so I had to be placed back onto it and have increased it and now have had some relief. It is by far a medication worth giving a try, and always remember (with the help of a doctor) if you feel it does not help your sons condition removing the drug is always an option.
I hope this helps a little. Keep going strong, if you have any other questions let me know. And remember this is not a medical opinion but a opinion based off experiences. Best of luck.
Hi there, thank you so much for your kind reply. What you have said is something I hadn't thought of!! I'll ask school re Skype etc.
Thank you also for letting me know about your experiences with Midodrine.
Practical useage means more than just reading information on line etc.
Do you put the feeling 'spacey' down to the Midodrine?
If anyone else reads this, did you/do you experience this feeling too taking the drug?
Thanks for your posting, and yes gut instinct is a life saver and in my sons case, literally.
I shudder to think what could have happened if I had listened to anyone else, including school, family, and the LEA. They are all quiet now we have a diagnosis but no apology as yet.
Have a good christmas and thanks again
Di x x
Hi there . I was using midodrine too, however I started to get some pretty significant side-effects including some already mentioned by other posters here. I certainly suffered with the tingling scalp, and it would often feel as though my eyes were going to pop out their sockets! I started to suffer with some very bad headaches , and my cardiologist changed my medication to fludrocortisone . I've been on fludro for around two years now, and it is fantastic . I still get pre-syncopial symptoms , but that's something I've learnt to live with . Sure, I still pass out now and then , but the difference it has made is considerable .
Thank you salter. I know this is going to be a learning curve in terms of trying medication.
It will be something to consider if Midodrine doesn't work in terms of side effect intolerance.
It sounds like the increase in blood pressure could have made you feel like your eyes were bulging out and it's something I'll watch out for if my son is going to take it.
Thank you for your help with this.
Di x x
I too have been on midodrine for about 3 years. I also get the tingling scalp about half an hour after I take it but it does not last long and is worth it for the regulated BP and not having a syncopal attack. I was diagnosed about 20 years ago again after a tilt test. I know they use it regularly but found it the most scary experience of my life and can recall each moment even now.
I now know that I have had it all my life even though I was only diagnosed in my late 20s and know it has run in my family through my maternal side.Used to pass out more regularly but doctors never really took much notice as low BP is regarded as good! It is so often misdiagnosed.
Through the brilliant work of STARS I found a consultant who understood and diagnosed midrodrine and have not looked back. As others have said speak to STARS, get their leaflets for the school and your family so they know it is a real illness not you being overprotective - they can help your son too. You are not alone.
Midodrine has allowed me to live a normal busy life without the fear of passing out or feeling dreadful although I get bouts when I am overworking and tired but nothing like I was without it. I would not be without it or the support of STARS.
Hi welsh pins,
Thanks for your comments. I'm amazed at how many kind people have offered their experiences to support me and reassure my son and I.
The tilt table test is horrid but a ' necessary evil' to induce symptoms s you can be treated.
I was fortunate they didn't give my son the under the tongue drug to help induce symptoms.
I did say to the cardiac tech she wouldn't need it and I was right.
I think he wil be put on this as the cardiac Consultant from Glenfield Hospital Leicester gave me a prescription but asked me NOT to get the drug until she had reviewed his result from the tilt table test.
In view of his heart stopping for 7-8 seconds, and the hospital keeping him in all day with vital signs at 15 minute intervals etc, then a discussion from the registrar with the Consultant . We have an urgent appt ( urgent for an out patient basis that is) for the 22nd December this year.
So I'm unsure if it will be just Midodrine (she has put 5MG to start) or anything else as yet?
Has everyone who answered on here, did you start on 2.5MG or 5MG or more?
Does the dose you take stay the same and did you have a lot of trial and error with the dosage to be taking the correct amount to control your symptoms?
Another question.... Sorry!! How do I know I have the best Consultant in this subject? Is there a list held at STaRS I can look at and if necessary, send my son to them?
I think the Dr we have is good as she was confident, works at a Regional Cardiac Centre with a good reputation for patient care and she came across to me as good with teenagers, as she included my son in the consultation.
I am in the East Midlands so I can travel anywhere for the best Dr in terms of clinical expertise in this area of medicine. It's my 'baby' at the end of the day, his life is precious and I feel its been luck so far that has kept him from more serious injury and thankfully he was flat when he fell.
My worry is he will have an episode in a chair or fall upright against a wall.
Then his heart could stop and no one will do anything until a first aid person arrives.
Schools have a 'hands off' policy because of insurance etc which is why I'm so concerned.
Sorry I've rambled on. I'm worried sick, and it's all come out on here.
Thank you for reading this and again, any comments will help, even reassuring ones along with experience of this condition and medication.
Thank you
Di x x x x
I too have been on midodrine for about 3 years. I also get the tingling scalp about half an hour after I take it but it does not last long and is worth it for the regulated BP and not having a syncopal attack. I was diagnosed about 20 years ago again after a tilt test. I know they use it regularly but found it the most scary experience of my life and can recall each moment even now.
I now know that I have had it all my life even though I was only diagnosed in my late 20s and know it has run in my family through my maternal side.Used to pass out more regularly but doctors never really took much notice as low BP is regarded as good! It is so often misdiagnosed.
Through the brilliant work of STARS I found a consultant who understood and diagnosed midrodrine and have not looked back. As others have said speak to STARS, get their leaflets for the school and your family so they know it is a real illness not you being overprotective - they can help your son too. You are not alone.
Midodrine has allowed me to live a normal busy life without the fear of passing out or feeling dreadful although I get bouts when I am overworking and tired but nothing like I was without it. I would not be without it or the support of STARS.
For me I had some minor chest discomfort and shortness of breath for the first week at 5 mg. then it went away. I'm at 10 mg. three times a day with no side effects. My build is similar to your sons, although I am 15 years older. I will still have some chills or goose bumps from it, but it's not that bad. I just wear a sweatshirt more than i used to.
My daughter takes midodrine initially she took fludrocortisone which didn't work she just increased weight.
She was purely on midodrine for 2 years but still had blackouts some very bad ones my daughter is now 22. After getting a second opinion or should I say forcing the hospital to give one, she had 2 positive tilt table tests. She has low BP & tachycardia POTS it's an awful thing to live with if the medication isn't right. She is under Adam Fitzpatrick in Manchester top consultant in his field.
After messing around her medication she's now on midodrine & propanalol which for the last 10 weeks has worked perfect 30mg of midodrine & 20mg propanalol 4 times a day.
She's worse if poorly as it affects her system but she's had 2 bads colds & ear infection in the past month & no blackouts which was amazing.
As long as the meds work my stress and worry level as mum stay away.
Without doubt the medication combination is key to staying upright with no blackout from sitting to standing position. If anybody meds any info please contact me.
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