Jump to content

Anyone react to taking midodrine?


Recommended Posts

I started midodrine and to be honest didn't feel any different. While I was on them I woke up with my left side of body going numb and this happened twice again. Before this happens I feel like my bloods being cut off, pin and needles then the numb. The other day I just started having spasms in body and left side of face. I stopped taking them after that and haven't happened again since (stopped about 2 days after taking them). 

Just wondering if anyone else has had a bad experience from them? I know the pots doctor is going to say no way its midodrine they don't cause crazy symptoms like that. 

Link to comment
Share on other sites

Midodrine triggered migraines in me. It is supposed to make your vessels contract, right? So I can see it constricting blood flow causing numbness. Over constriction is what caused my migraines. It took 48 hours to go away as well. 

Link to comment
Share on other sites

@Nin - Midodrine is mostly used for POTS types that suffer from dilated blood vessels. I have problems with the vessels constricting and cutting off blood flow, causing seizures like yours. I was put on Midodrine early on in my illness and it did not help me, actually it made me feel worse. When I began to see my autonomic specialist he told me it was the wrong med for my type of POTS. I was started - in addition to many other POTS meds - on a calcium channel blocker, which dilates vessels, and that has greatly improved my HR, BP and circulation. 

Link to comment
Share on other sites

I had a different but very concerning experience with Midodrine. For the first two weeks on a low dose twice a day, it seemed to be working really well. Then I got a sudden blood pressure spike, and not realizing it was caused by Midodrine, took my second dose. The next few hours were scary. My autonomic specialist took me off it. Years later I dried it again using microdosing, but it still spiked my BP. It is a medication to take with careful monitoring.

Link to comment
Share on other sites

2 hours ago, Sushi said:

I had a different but very concerning experience with Midodrine. For the first two weeks on a low dose twice a day, it seemed to be working really well. Then I got a sudden blood pressure spike, and not realizing it was caused by Midodrine, took my second dose. The next few hours were scary. My autonomic specialist took me off it. Years later I dried it again using microdosing, but it still spiked my BP. It is a medication to take with careful monitoring.

Midodrine is a last resort drug to try from what i have read. I know my care team won't prescribe it for the reasons stated and then some. We did consider northera but the team backed out of that as well.

Link to comment
Share on other sites

9 hours ago, Pistol said:

@Nin - Midodrine is mostly used for POTS types that suffer from dilated blood vessels. I have problems with the vessels constricting and cutting off blood flow, causing seizures like yours. I was put on Midodrine early on in my illness and it did not help me, actually it made me feel worse. When I began to see my autonomic specialist he told me it was the wrong med for my type of POTS. I was started - in addition to many other POTS meds - on a calcium channel blocker, which dilates vessels, and that has greatly improved my HR, BP and circulation. 

I have low blood pressure so I thought I would need a constriction type med am I wrong? Before I have seizures my blood pressure does go up so maybe being on something that would take it up more is not for me because of what happens before a seizure. 

Link to comment
Share on other sites

Just now, Nin said:

I have low blood pressure so I thought I would need a constriction type med am I wrong? Before I have seizures my blood pressure does go up so maybe being on something that would take it up more is not for me because of what happens before a seizure. 

Is there anything else they can try for me? I've tried salt tablets, Fludrocortisone. They won't offer iv fluids in the UK. I feel like they're going to say we can't help anymore. I know they're going to also think Midodrine should have worked for me and can't get terrible side effects just the normal ones like headache, dizziness etc

Link to comment
Share on other sites

I just started midodrine a few days ago.  Very low dose, e.g. 2.5mg two times per day, not to be taken at least 4 hours before bed.  The first thing I noticed was the first labled side effect - itchy scalp.  Not itchy, but tingling.  I have also noticed that I am on the edge of leg spasms, so I am keeping my leg cramp (quinine) pills handy.  I am about to ramp up to 3 times daily.  I am monitoring my BP, and it is up, but not dangerous at all - so far.  As for results, I have managed to spend a couple hours on my feet without crashing.  Not active standing, just putzing at my shop bench on a project a stranded over a year ago.  I'm still ight headed and won't go near my table saw, but I sense an improvment.  I was atypically exhausted after yesterday's shop fun.  The warnings are not to be supine while the drug is "active" (within half-life).  So, I did anyway with my BP cuff at the ready (hey, I'm curious).  And sure enough, my systolc BP jacked to 145 from 115.  Okay, I can work with that - back to my trusty old IKEA POANG.  Another observation that I will call positive is that my legs are tingling.  i don't equate this with pain as much as I do stimulation.  I was diagnosed with adreneric hypotension.  Those little small fiber nerves just weren't getting the message, or, if they were, they were giving me the proverbial finger.  

My gut feeling is that it's going to work once i balance dosing.  What I need to learn is what happens to BP if I get physical, e.g. mowing and weed eating.  I am curious about modulating dosings, e.g. more if planning to be outdoors and active and less if housebound due to weather or ... old and lazy.  I cannot put my legs up on an ottoman or recliner when this drug is active - and I've found myself "restless legging" e.g. flexing calf muscles, twisting feet at ankles etc.  

Wooops, sorry about the long winded ramble.  

Make the best of your holiday.

 

Link to comment
Share on other sites

18 hours ago, Nin said:

is there anything else they can try for me? I've tried salt tablets, Fludrocortisone. They won't offer iv fluids in the UK. I feel like they're going to say we can't help anymore

Do you know, from testing, whether your sympathetic system is in overdrive, or your parasympathetic? It is most commonly the sympathetic but some, like me, are outliers and did well with a medication like strattera which increases norepinephrine in the synapses. A half an hour after each dose orthostatic intolerance was gone. But, I do not have POTS, rather neurally mediated hypotension. It might be a question to ask your doctors.

Link to comment
Share on other sites

2 hours ago, mehaller said:

I just started midodrine a few days ago.  Very low dose, e.g. 2.5mg two times per day, not to be taken at least 4 hours before bed.  The first thing I noticed was the first labled side effect - itchy scalp.  Not itchy, but tingling.  I have also noticed that I am on the edge of leg spasms, so I am keeping my leg cramp (quinine) pills handy.  I am about to ramp up to 3 times daily.  I am monitoring my BP, and it is up, but not dangerous at all - so far.  As for results, I have managed to spend a couple hours on my feet without crashing.  Not active standing, just putzing at my shop bench on a project a stranded over a year ago.  I'm still ight headed and won't go near my table saw, but I sense an improvment.  I was atypically exhausted after yesterday's shop fun.  The warnings are not to be supine while the drug is "active" (within half-life).  So, I did anyway with my BP cuff at the ready (hey, I'm curious).  And sure enough, my systolc BP jacked to 145 from 115.  Okay, I can work with that - back to my trusty old IKEA POANG.  Another observation that I will call positive is that my legs are tingling.  i don't equate this with pain as much as I do stimulation.  I was diagnosed with adreneric hypotension.  Those little small fiber nerves just weren't getting the message, or, if they were, they were giving me the proverbial finger.  

My gut feeling is that it's going to work once i balance dosing.  What I need to learn is what happens to BP if I get physical, e.g. mowing and weed eating.  I am curious about modulating dosings, e.g. more if planning to be outdoors and active and less if housebound due to weather or ... old and lazy.  I cannot put my legs up on an ottoman or recliner when this drug is active - and I've found myself "restless legging" e.g. flexing calf muscles, twisting feet at ankles etc.  

Wooops, sorry about the long winded ramble.  

Make the best of your holiday.

 

Sounds like you are having a good starts far i hope it continues. Be careful in the shop back in January i had an episode and ended up spilling about a half pint of blood. Guess my body wanted to try bloodletting. 

Link to comment
Share on other sites

2 hours ago, mehaller said:

Mike O, where in Wisconsin.  We used to live in River Falls/Hudson.

Closest city you might recognize is Stevens Point. I have a relative that lives in River Falls.

Link to comment
Share on other sites

On 7/3/2022 at 2:12 PM, mehaller said:

I just started midodrine a few days ago.  Very low dose, e.g. 2.5mg two times per day, not to be taken at least 4 hours before bed.  The first thing I noticed was the first labled side effect - itchy scalp.  Not itchy, but tingling.  I have also noticed that I am on the edge of leg spasms, so I am keeping my leg cramp (quinine) pills handy.  I am about to ramp up to 3 times daily.  I am monitoring my BP, and it is up, but not dangerous at all - so far.  As for results, I have managed to spend a couple hours on my feet without crashing.  Not active standing, just putzing at my shop bench on a project a stranded over a year ago.  I'm still ight headed and won't go near my table saw, but I sense an improvment.  I was atypically exhausted after yesterday's shop fun.  The warnings are not to be supine while the drug is "active" (within half-life).  So, I did anyway with my BP cuff at the ready (hey, I'm curious).  And sure enough, my systolc BP jacked to 145 from 115.  Okay, I can work with that - back to my trusty old IKEA POANG.  Another observation that I will call positive is that my legs are tingling.  i don't equate this with pain as much as I do stimulation.  I was diagnosed with adreneric hypotension.  Those little small fiber nerves just weren't getting the message, or, if they were, they were giving me the proverbial finger.  

My gut feeling is that it's going to work once i balance dosing.  What I need to learn is what happens to BP if I get physical, e.g. mowing and weed eating.  I am curious about modulating dosings, e.g. more if planning to be outdoors and active and less if housebound due to weather or ... old and lazy.  I cannot put my legs up on an ottoman or recliner when this drug is active - and I've found myself "restless legging" e.g. flexing calf muscles, twisting feet at ankles etc.  

Wooops, sorry about the long winded ramble.  

Make the best of your holiday.

 

Sounds like its working good for you. 2.5mg didn't do anything for me and only on for 5mg for 5 days so didn't really get to try. If I keep getting these episodes maybe will try again 

Link to comment
Share on other sites

55 minutes ago, Nin said:

Sounds like its working good for you.

Everything backfired yesterday.  I took my second 2.5 a couple hours early - miserable.  Standing BP was 150/110.  I've never had my BP go that high, not even during healthy guy stress tests.  Headaches, more lightheaded than pre-meds.  My heart pounded all night - got two hours of sleep.  I'm wasted.  Oy

Link to comment
Share on other sites

1 hour ago, mehaller said:

Everything backfired yesterday.  I took my second 2.5 a couple hours early - miserable.  Standing BP was 150/110.  I've never had my BP go that high, not even during healthy guy stress tests.  Headaches, more lightheaded than pre-meds.  My heart pounded all night - got two hours of sleep.  I'm wasted.  Oy

Oh no that's terrible! Its weird because my BP is on the low side 95/56 and midodrine wasn't bringing it up so I don't know why I was having these weird twitching, numbness, pin and needles episodes. I was feeling really faint as well. I just keep questioning was it something else causing that and should I go back on them. Maybe my BP was spiking from them in the night when laying down even thou I took them hrs before. Thats a shame for you as they seemed OK at first

Link to comment
Share on other sites

21 hours ago, mehaller said:

Everything backfired yesterday.  I took my second 2.5 a couple hours early - miserable.  Standing BP was 150/110.  I've never had my BP go that high, not even during healthy guy stress tests.  Headaches, more lightheaded than pre-meds.  My heart pounded all night - got two hours of sleep.  I'm wasted.  Oy

That is similar to my experience, (though I didn’t take my dose early) but once I had had that reaction I could never take it again without a BP spike. Understand that you feel wasted! I held the phone for six hours debating whether to call 911.

Link to comment
Share on other sites

Just shoot @mehallerwas hoping the best for you. This drug may not be right for you. The 150 systolic is not the worst in the world but the 110 diastolic IMO is concerning and i don't care what Dr Google says.

I know my care team won't put me on this but i have other issues. While i don't know a lot about the drug what i can tell you it may take a few tries to accumulate to a new drug.

Not sure if you can split the 2.5 mg down and work your way back up but if it was me i would try a rechallenge after a couple of days.

There are also other drugs that can help with getting your ANS firing better Pyridostigmine is one of them or helping with elevating your blood volume.

Just don't give up!  

 

Link to comment
Share on other sites

Thanks @MikeO  Haven't tossed in the towel.  Went to Portland the other day for a Stellate Ganglion Block. Didn't happen.  Doc was very conservative and wanted to make sure that he didn't push my parasympathetic response into a permanent state - e.g. go backwards and make it worse - something he thought was a <.5% risk.  He sees my symptoms and paradoxical.  So, we did a ten minute block (as opposed to a four hour anesthetic - full block).  I'll return in a couple weeks for the full block.  Give it a shot - pardon the pun.  

Link to comment
Share on other sites

2 hours ago, mehaller said:

Went to Portland the other day for a Stellate Ganglion Block. Didn't happen.  Doc was very conservative and wanted to make sure that he didn't push my parasympathetic response into a permanent state - e.g. go backwards and make it worse - something he thought was a <.5% risk

Could you explain in more detail? Was he worried about increasing the parasympathetic response or perhaps increasing the sympathetic response? I have assumed that a Stellate Ganglion Block would not be helpful for me as I already have a hyper parasympathetic response, but maybe it my understanding is backward?

Link to comment
Share on other sites

@Sushi  He was concerned that it would switch on a more severe parasympathetic response.   Again, he thought there would be a minute chance of that, but he's conservative.  And thorough.  I don't think I have ever had a doctor interview me for two hours.  So far, the reaction is as was assumed.  So, I go in for the full block in two weeks.

Link to comment
Share on other sites

14 hours ago, mehaller said:

He was concerned that it would switch on a more severe parasympathetic response.

Interesting. So my understanding that SGB is thought to increase the parasympathetic response is correct? In which case, it seems that it would not be a suitable treatment for somebody who already has an a too intense parasympathetic response?

Link to comment
Share on other sites

My understanding is that it is a reboot/reset of the sympathetic NS, which is what is triggering the para response.  My doc and I went over this at length.  He's done a 1000 SGBs, PTSD, trauma, dysautos, and more recently, long COVID folks with dysauto symptoms.  

Link to comment
Share on other sites

6 hours ago, mehaller said:

He's done a 1000 SGBs, PTSD, trauma, dysautos, and more recently, long COVID folks with dysauto symptoms.  

He what now? 

Link to comment
Share on other sites

On 7/9/2022 at 2:40 PM, mehaller said:

Thanks @MikeO  Haven't tossed in the towel.  Went to Portland the other day for a Stellate Ganglion Block. Didn't happen.  Doc was very conservative and wanted to make sure that he didn't push my parasympathetic response into a permanent state - e.g. go backwards and make it worse - something he thought was a <.5% risk.  He sees my symptoms and paradoxical.  So, we did a ten minute block (as opposed to a four hour anesthetic - full block).  I'll return in a couple weeks for the full block.  Give it a shot - pardon the pun.  

Glad to hear you are still trying. I heard about the Stellate Ganglion Block before in fact a couple of folks brought it up in this forum just never heard if they went thru with it or not. Sounds promising. Certainly interested to see how it works out for you. 

Link to comment
Share on other sites

  • 4 weeks later...
On 7/2/2022 at 6:10 AM, Pistol said:

@Nin - Midodrine is mostly used for POTS types that suffer from dilated blood vessels. I have problems with the vessels constricting and cutting off blood flow, causing seizures like yours. I was put on Midodrine early on in my illness and it did not help me, actually it made me feel worse. When I began to see my autonomic specialist he told me it was the wrong med for my type of POTS. I was started - in addition to many other POTS meds - on a calcium channel blocker, which dilates vessels, and that has greatly improved my HR, BP and circulation. 

I've only been diagnosed for about 1-2 months, so I am new to a lot of this, but would you say that if I similarly felt worse (terrible headaches) with midodrine, would it be safe to assume that compression wear wouldn't be beneficial for my phenotype of POTS? We are guessing it is possibly hyperadrenergic but I have lower BP than some others have, without fainting.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...