In Place Of Midodrine

[db2504]

Hi everyone. I hope the suffering is not too bad with the summer heat. Has anyone been prescribed any thing rlse other then midodrine for dizziness? It is sffecting my daughter's bladder, so she needs to take something else.

[heissovereign]

I started Northera in November 2014, it has helped a bit. I started slow on 100mg tid and titrated to 300mg tid in six months.

[JenLR]

I was just prescribed Northera, and am starting it next week. It's a vasoconstrictor like midodrine, but it works in a completely different way. It's extremely expensive, but hopefully your insurance plan will cover it!

Heissovereign - my doctor wants me to titrate up every 2 days, until I'm at 1600mgs a day. I don't think there is anyway I can do it that quickly! Has it helped any with fatigue?

[ramakentesh]

Phenylephrine and dihydroergotamine are other options

[jesse1919]

Any more info about Phenylephrine? It doesn't seem to be a standard med for POTS/ OI but it seems logical since it's an "alpha 1 agonist" similar to midodrine. Why is it usually only used a a decongestant? There's very little info about using it for vasoconstriction deliberately. I found this:

http://www.cortjohnson.org/blog/2015/02/03/standing-clear-drug-stops-orthostatic-intolerance-mecfs-next-steps/

It says:

They injected phenylephrine in the study but found that taking it nasally or orally had little effect.

So maybe try a higher dose?

Vanderbilt is doing a some study on Northera for POTS and initial results showed it does not work well, according to Dr. Raj at the Dysautonomia International conference.

[Clb75]

Jesse,

Do you have any more information about this northera and pots study, or any links to the research? Dr. Raj is no longer at Vanderbilt, was he a part of this study or just discussing it?

Thanks!

[imapumpkin]

i take licorice root extract tablets i buy at whole foods or other health food stores. definitely notice a boost in my bp. tried midodrine and it gave me a kidney infection. never again.

[cctalk]

I am now on Midodrine and Mestinon but for a little bit the Midodrine was affecting my bladder as well. And I already had had a diagnosis of "overactive bladder" before culmination of things and an actual diagnosis, so I just wanted to ask you how long she has been on Midodrine and what dose. I would say for about the first 2-3 weeks I was retaining urine and it was difficult for me to go/urgency, etc. But because I had had those problems off and on for about a year now I waited to see if it would subside and it did. Eventually the midodrine has now actually helped me get rid of fluid I retain normally. But if Midodrine really doesn't work at all, I actually really like Mestinon so far. It is really new to me but it is probably the most well tolerated drug I have tried so far. So you may want to ask about that one!

[ramakentesh]

Phenylephrine is used for POTS/OI in Australia. I am told it is less bioactive than midodrine and requires a larger dose as a consequence. I took it for a while and it worked well but the half life was tiny (2-3 hours on a good day). It also has central effects which seemed to help me but not every body.

Increasing norepinephrine synthesis in POTS may or may not work very well. In australia they refuse to include POTS patients in the Northera study out of concern it may worsen tachycardia.

[ramakentesh]

Some other docs are now trialling Northera for POTS. But Id tend to think Dr Raj is right on this (as always).

[ramakentesh]

Dihydroergotamine has the added bonus of activating serotonin receptors only in the veins therefore bypassing and avoiding the adrenergic system completely (although some studies do suggest that it activates alpha 1 receptors like midodrine and phenylephrine)

You may or not be aware but the best med for my POTS in terms of improvement of symptoms and reliability of action is Pseudoephedrine but obviously high tachy POTSies should avoid.