Midodrine - Medication for POTS

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Re: Midodrine - Medication for POTS

Postby ClareM » Tue Jun 24, 2008 5:16 pm

Hannah, I'm very sorry I didn't see or reply to this sooner. Have you rung the autonomic nurse yet? If so, was she able to help?

I didn't have any problems on my starting dose of midodrine but, when it was increased, I found that my heart rate wouldn't rise sufficiently in response to activity so I felt rubbish. I didn't notice any real problems whilst lying down but, when I had my BP checked it was lower whilst lying down than it was while standing which wasn't what I'd expected on midodrine. I had to have my dose reduced almost to the starting dose because of the problems it gave me with emptying my bladder & headaches, etc. and didn't feel too bad. However, when I started taking my betablocker too I again had the problem of my heart rate refusing to rise when I needed it to and felt utterly dreadful. It took a lot of willpower to stick it out until things evened out a bit after a couple of weeks.

I know my experience isn't exactly the same as yours but I just think maybe the combination of midodrine & betablocker can take a little while for the body to adjust to. I also think that for people like you & I, whose bodies are used to us having a high heart rate, it is too much to cope with when our heart rate goes down to what might be normal or just below normal for most people but is WAY below normal for us.

I hope that you're feeling better now & that the midodrine is helping now.

I think my biggest problem with the midodrine/betablocker combination is that when each dose of midodrine starts to wear off as it approaches 4 hours since I took it, the betablocker effect is still active so I have the blood pressure & heart rate lowering effect of the betablocker without the blood pressure raising effect of the midodrine (until the next dose kicks in) and that's when I feel really bad.

Love,

Clare
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Re: Midodrine - Medication for POTS

Postby hannah » Tue Jun 24, 2008 8:02 pm

Thanks Claire :) It is nice to know that you've 'been here' too.

:oops: confession that I kept forgetting to call the nurse.

I had by bloodpressure checked at local surgery today. Like yours mine rose when standing - and there was me thinking that lying was where it would be highest! I wonder whether that isn't a partial explanation for the other night.
I'm still feeling intermittently moderately pants, but that could just be coincidence.Or not.

I am finding it a little wierd with the different lengths of time they are affective for. But I'm doing OK. My body seems to be adjusting.

The local nurse told me to call the auto nurse to check whether doses need adjusting, so I will put it in my diary for Thursday. (My ingrained attitude of 'but it is nothing really, I don't wan't to make a fuss' really gets in the way sometimes :( )

Hannah
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Re: Midodrine - Medication for POTS

Postby ClareM » Fri Jun 27, 2008 3:52 pm

Hannah, I'm glad your body seems to be adjusting to the midodrine.

Did you contact the autonomic nurse yesterday? I'm sure she wouldn't feel that you were making a fuss. As you know, most GPs & pharmacists have never prescribed midodrine before so I'm sure everyone would prefer that you contact the autonomic nurse rather than be on a dose that doesn't suit you.

When I saw Prof. M earlier this month he said it might be worth me taking an extra dose of midodrine per day but I'm hoping I don't have to because my current dose already makes my difficulty emptying my bladder much worse & I'd prefer not to have to self-catheterise more than the 3 times a day that I'm already doing. :S

Love,

Clare
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Re: Midodrine - Medication for POTS

Postby hannah » Sat Aug 15, 2009 12:51 pm

I have now slightly increased my midodrine and take a minimal ammount of propranolol - with a view to phasing prop out completely.

I have been on my current regime for over a week. v slightly less propranolol (1 tab of minimum dose per day) and increasing the midodrine (I am still only taking half the recommended dose of mido) really improved how I feel - loads of people commented that 'it's like having the old hannah back' :D
all great.....only......

The past couple of days I've been getting intermittent feeling out of breath. and tis getting worse. Last night was moderately bad, today every time I get up and do anything I feel like there's a cow on my chest. This definitely isn't my standard high heart rate - cos my pulse isn't even up to 90bpm, nor is it very slow... just 'healthy'.

However, I can't get my BP monitor to take my blood pressure. It gives error messages :(

Does anyone have suggestions?

H
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Re: Midodrine - Medication for POTS

Postby Eloise » Sat Aug 15, 2009 10:55 pm

Well it could be the midodrine - but just as likely it could be withdrawal from the stepping down of the propranolol.

Try and take things easy and do all the other POTS advice (i.e. fluid, salt) and see how it goes over the next few days as it may settle. BUT if at any point you black out / struggle to breathe then get medical help asap.

Also - it could even be totally seperate to your medication and maybe that you are coming down with something like a chest infection - so keep monitoring yourself and contact someone if you get worse.
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Re: Midodrine - Medication for POTS

Postby hannah » Sun Aug 16, 2009 11:45 am

Thanks Eloise :) I did absolutely nothing yesterday, and am planning a similarly active day today, and have been at the salted peanuts again. Not feeling too bad so far, but then, I've only been out of bed for an hour - and that was only to watch the athletics! I'll keep an eye on myself and if I get worse I'll see a Dr.

H
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Re: Midodrine - Medication for POTS

Postby bree » Sun Jan 22, 2012 4:38 pm

Hi All

Would really like to hear from anyone on midodrine?. I started it last monday and after 2 days of seeing an improvement in my light headness and feeling cold all the time, i had a real turn on it. It started on the wednesday when I had a really bad dizzy spell, which felt much more intense than normal and next morning my lying standing pulse (which is checked first thing in morning now) went from 90-170. I thought it was a bit odd but not too worried. Anyway, Thursday evening about an hour after taking I suddenly came over all exhausted and my legs buckled underneath me. I had the most intense dizziness that seemed to last ages, severe headache and pain around my eyes and my heart was pounding like its never done before and I just felt really strange couldn't even speak. When my friend got around to checking my pulse it was 166 (at which rate it was starting to slow down). It eventually passed though I felt awful/headache for a good 24 hours after. It really scared me as it did not feel like my normal pots episodes.

Tried to speak to NNH but no joy so am going to email. Needless to say I have stopped taking and will keep trying NNH. Has anyone else had a bad experience ? Am gutted as I really felt it was doing some good. Not sure if they can offer me anything else as they were worried about raising my BP too much.

Really appreciate and advice/feedback. Not meaning to scare anyone else who is on it, I know it works well for a lot of peolpe, I always have trouble with reacting to meds.

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Re: Midodrine - Medication for POTS

Postby star gazer » Sun Jan 22, 2012 7:45 pm

Bree sometimes other meds you are taking can also have an impact when taken with midodrine, I was on amiltryptaline (sp) for neuro pain which worked really well but a side affect can be increased hr, so i was told to come off them (slowly) before i could start the midodrine, now nhnn are twitchy about diazepam, Tramadol, co codamol with midodrine as they work against each other?? it was explained by Dr.I. but i can't remember what he said, also if I did not have my pain meds I wouldnt be able to move around so I have carried on NHNN know this, the only symptom i remember having when starting was an itchy scalp!!! it was a low dose start that increased over a couple of weeks. when they increased my dose again in the summer i was unable to tollerate it, had odd symptoms so it was reduced back down, my b.p was always very low but now on the low side of normal, and it was the very low b.p that mad me feel so unwell. My hr does very odd things when i have a virus or bug of some sort. Have you tried phoning the actual autonomic unit and leaving a voice mail?
it might be that they need to adjust your dose. I hope you get an answer soon. and things have settled a bit, are you still taking them and have these episodes continued?
let me know how you get on
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Re: Midodrine - Medication for POTS

Postby bree » Sun Jan 22, 2012 9:19 pm

Hey Stargazer

Hope your ok?. Any news about your dates for Prof Aziz ?. I am now waiting to be referred to him today NNH recommended it. Apparently he is the expert in tummy issues that can be caused by autonomic problems, so I am sure he is worth seeing. I left a message on specialist nurse phone friday and sent email so am sure she will get back to me. I decided to stop taking, it really did not feel like my normal pots. I am on the lowest dose I think 2.5mg. Only thing I can think of is that I was sitting on my bed with feet up when I first started to feel a bit weird and then I went to go to toilet and collapsed. Not sure if sitting on bed raised my bp too much.

They had a list of my meds and didn't seem worried but I did take temazpam the night before and just took my calcium. who knows :S . Hopefully, they can reassure me and I can start again or maybe something else??. It was very frightening at the time as I almost felt like I was having a stroke. The really worrying thing is that I was in another hospital for pain management/rehab and to say they were complacent is an understatement. I hate to complain but I am a nurse and quite sensible so I knew what to look out for and to stop taking tablets for now, others may not know. They only checked my obs once and sent me home for weekend and when I asked to see a dr I was fobbed off. I don't make a fuss about my POTS and when I fainted in there before I was quite happy to just get into bed and actually prefer to be left alone, but this was very different and I really was bit shocked by the behaviour. The night nurse said "oh yeah you don't look right" and then walked off, leaving my curtains closed with a bell that didn't work hello :roll: . Anyway rant over..

I hope that your ok. Will keep you updated.

Best wishes

Bree
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Re: Midodrine - Medication for POTS

Postby star gazer » Sun Jan 22, 2012 11:05 pm

Hi Bree, sounds like a wise move to stop until you know more, sounds like a very frightening episode. Also if that med is not right for you there are at least 3 others I know of that they use for pots. My son will not be prescribed Midodrine because of the bladder emptying implications in men who have a higher percentage needing catheterization.When we go to london tomorrow they will discuss his med options one was fludocortisone and the other a beta blocker but we will wait and see what they say as it will be dependant on the results of his tilt and 24 hour ecg.. I need to email the clinical nurse to see if they can arrange referral to Prof Aziz also need a repeat script, so I will do that when we get home from london.
catch you later
sg xx
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Re: Midodrine - Medication for POTS

Postby bree » Fri Feb 03, 2012 10:37 am

Really confused. NNH want me to start back on midodrine once a day and gradually increase. They say that I need to keep an eye on headaches but they can't explain why it would give me a pounding in the chest or make dizziness worse, really confused as its listed in the rare side effects and it says to stop taking immediately if that happens.

Don't know what to do, very nervous about restarting. They also can't give me an explination for pain in my head and tingling in scalp (even when not midodrine) its the pain that worries me more.

NNH drive me mad sometimes why can't they try me on something else or are they just not believing me :roll:

What to do :roll:
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Re: Midodrine - Medication for POTS

Postby Eloise » Fri Feb 03, 2012 12:06 pm

they are probably wondering whether it was the midodrine or something else or that it was a coincidence, so they want you to start back and to test whether it is. All drug list to stop immediatly if there is an anaphylaxis reaction, and that can happen with any drug - which is a swelling of the airways and unable to breathe - although similar by mentioning chest symptoms this doesn't sound like what you experienced.

They are probably not trying you on something else as there isn't anything else. Midrodrine is very expensive and has to be ordered in specially as not manufactured in this country and is usually only used as the last restort when all the other medicines have failed, so this is NOT a cheap and simple fob off.
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Re: Midodrine - Medication for POTS

Postby bree » Fri Feb 03, 2012 12:46 pm

I know it was not an allergic reaction. It does state if these side effects happen it may be a sign of hypertension and to stop taking and contact a dr. Which is what I did and it tool 2 weeks for somebody to get back to me. Hence the reason I do feel fobbed off, my bp can go very high anyway and there is a long family history of strokes so I am understanably wary am these side effects. I understand these drugs are a last resort and expensive ( a lot of drugs are very expensive). I did not take this drug lightly only as pots is greatly affecting my life and I am nearly unable to work.

There are other drugs at least 3 that I am aware of to treat pots. I understnad the pressure these doctors are under and having worked in nhs, am fully aware oe expense of drugs. As u said its a last resort, hence my undertandable annoyance at having to wait 2 weeks for any sort of reply.
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Re: Midodrine - Medication for POTS

Postby goldengirl » Fri Jan 18, 2013 11:24 pm

Totally in shock. Just been prescribed Midodrine by Prof M and took the private prescription to my GP to ask for it on the NHS. He says it's not available to anyone on the NHS so I have to buy it privately at a wonderful £180 for 126 tablets!!!!

Is this right?! Is Midodrine not available on the NHS?! Ahhhhhh!!!!
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Re: Midodrine - Medication for POTS

Postby bree » Sat Jan 19, 2013 11:21 am

Hi

You should be able to go straight to the chemist with this and not have to pay for it. That is what I did. It is on special licence so only consultants can perscribe. So just take to your chemist. It will probably take a week or 2 to get it in.

If this doesn't work phone prof M secretary.
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