Midodrine Side Effects

[rach73]

Hi,

sorry I know its another midrodine question!

I started midodrine last week 2.5mg twice a day. Im having the side effect of piloerection (hair standing on end - not literally) which although weird is ok.

My main problem I have developed over the last few days which is having problems urinating and it causing pain. I don't have a urinary tract infection, the pain isn't burning at the urethra etc. I have a lot of UTI's so I know its not that as mine follow a very set pattern of signs and symptoms.

It is listed on the patient information leaflet that came with the drugs as a side effect. Has anyone else had this problem and did this side effect lessen overtime?

I can't use florinef as it gives me awful headaches and I really don't want another drug written off due to side effects. I can't tolerate mestinon either.

Any info would be appreciated.

Rach

[mwise]

Hi Rach,

I get alot of urinary frequencey-the urge to go along with going alot. I have never had any burning or pain from Midodrine. I take Midodrine 7.5mg 3xday & as needed. I have been on it since February 2011. I definitely get the itchy scalp, goose bumps, feel cold, hair standing on end along with parathesia but the benefits of being able to walk, work and do little things out weigh the side effects. My co-workers & I laugh when we see me itching my head because we know my medication is working. I too could not take Florinef, but I do take Mestinon 60mg 3xday in-between the Midodrine. It really was the Midodrine which has helped the most. Good luck

[rach73]

Thanks for replying.

The straining to urinate is only happening when the dose is active and eases off between doses. However my bladder is aching from me having to push so hard!

I urinate frequently one day I got bored and counted how many times I went in 24 hours it was 26 times! So its very painful when I have to go this much. Im going to give it a few more days if I can, but if it gets too bad I'm just going to have to call it quits.

Rach

[Csmith3]

Rach

Yes, I had exactly the same problem with urinary retention. I think the problem is that the drug binds alpha receptors and some of these receptors are at the base of the bladder. Mine developed as time went on and the dose was increased. I got the feeling it was only going to get worse with time rather than better. I mentioned it to my consultant. He didn't seem surprised.

The decision to stop taking midodrine on a regular basis was made for me due to other reasons (my body seemed to get used to the higher blood pressure and my heart rate compensated by going too low). I still take it on an ad hoc basis if my BP is very low and don't get any problems with retention.

Sorry to be the bearer of bad news; I know it is disappointing when midodrine can't be tolerated. It seems to me that it is the only drug that gets close to the root of the problem for those of us with EDS3 and whilst it was working well for me, I felt better than I had in 20 years.

Best wishes

[rubytuesday]

I read that the midodrine can cause itchy scalp (to some probably perceived as hair standing on end). It would make sense that it might affect bladder receptors. My BP is still running low on the Mestinon and Midodrine and I've not noticed retention (hope I don't). What I have noticed is worsening nausea that was present before the 2 meds were introduced, but I think it might be more from the Mestinon as I also get intervals of severe stomach cramping and vomiting now (probably because the stomach is so vascular and it is vasoconstricting which my stomach seems to be rebelling). I'm down to about 93 lbs now and I sure can't afford to lose more weight (plus the vomiting makes the BP drop lower and makes the esophageal irritation worse).

[rach73]

Thanks for your replies.

I had guessed that the problem would probably get worse the more the dose was increased as its issued for people with urinary incontinece as well. Ive decided not to take it today as my bladder needs a break. I will try again in a few days but if it continues I can't take it. Im prone to UTI's and urinary retention is only going to make that worse.

Thanks again

Rach

[targs66]

Will a lower dose work for you?

I tried midodrine last summer, and felt like it really helped with the low BP, but (as usual for me) I could only tolerate about 1/2 or even less of the amount the doctor prescribed. (The problem I had seemed to be a lower heart rate than usual) At a lower dose, I still got some of the benefits of BP support, but didn't have such problems with side effects.

Apologies if that's overly simplistic! I hope you find relief soon.

[rach73]

Thanks for the reply.

I'm taking 2.5mg it hasn't done anything for my BP but then its only been 9 days.

I didn't take it yesterday to give my bladder a break and I could pee no problems. Ive started it again today and no problems so far. So I will just wait and see for a bit.

Rach