Problems With Midodrine?

[koenig12]

Background: I like most in here, was in the shape of my life, enjoying my early 30's and all of a sudden this weird illness hitme. I went from Dr. to Dr. and they tried everything from Thyroid tests to Adrenal tests and of course kept calling it anxiety. I went to a CFS clinic at Harborview in Seattle and my new family doc sent me for a TTT and I passed out after 7 minutes (iv of saline only no adrenaline). He then sent me to this website and gave me a prescription of Midodrine. That night I felt weird... Had a major headache and felt like I was on fire. for the next week, I felt like my heart was going to explode and my head hurt so bad, I could even drive. I quit taking and today is the 1st day off of it. My chest still aches a bit, but no head problems or anything. I have severe leg tingles and feel completely fatigued, but better than when I was on the Midodrine.

Anyone else have problems with it? Are there other meds instead? I called my Dr. but just left messages.

He had me on 5mg (1/2 in am and 1/2 in afternoon) and was going to increase it from there....

thanks!

Brian

[Ernie]

Hi,

Welcome aboard.

There are plenty of medication you can take.

Take a look at this link.

Treatments (what helps)

http://www.dinet.org/what_helps.htm

What to Avoid (what makes things worse)

http://www.dinet.org/what_to_avoid.htm

There are many more that are not listed but this is a start.

[mrsdavidson8605]

There are several meds out there. Just don't want to give you false hope that taking a pill will "fix" you immediately. There are a lot of us who have been battleing medications for a long time and their side effects. I was on Midodrine for about a week but couldn't take it anymore. I had SEVERE tingling down my head and neck. Felt like something was crawling on me. There are other meds out there. Don't give up!

[belayergirl]

I too have problems with the creepy crawly feeling on my head. Midodrine is hard for me to take if I know I will be napping at all; anytime I lay I start to feel my head pulse and my heart pound. I have reserved taking Midodrine only when I absolutely need it. Have you tried other meds (florinef) or things like pedialyte and thermotabs?

Nicole

[koenig12]

Interestingly enough, early on in my search for answers, I came across a dr. whom prescribed flurinef (sp?) and it helped get me to a functioning stage. He was an MD who practices primarily naturalpathic remedies. Another metabolism doctor talked me into not returning to see him, but in hindsight he was right on. He had me taking Vit. B12 shots and the flourinef. I'll discuss it with my current doc.

Thanks for the info guys!

[flop]

Hi Brian,

welcome to the forum. Sounds like you had a similar battle to many of us in getting a doctor to actually work out what the problem is. Sorry you didn't get on with the Midodrine, it doesn't suit everyone. Personally it doesn't give me any side-effects at all, but I'm not sure that it does me any good either!

Dysautonomia meds are very much trial and error - what suits one person can make another feel dreadful. don't be dishartened that one med didn't work, perhaps trying the florinef again is a good idea. Most people find that drinking lots of water and taking a high salt diet / salt tablets can help to boost blood volume and keeps your blood pressure up a bit. Pretzels and salted popcorn (no butter) are good low-fat high salt snacks.

Flop

[mkoven]

I have all kinds of strange drug reactions, but seem to tolerate low-dose midodrine pretty well. I have a hard time getting the dose right-- too much and I feel agitated, too little and it doesn't do much. Right now, I do 3.75mgs every 3 hrs. My main side effect is chills and tingling scalp--but not a problem.

When my bp drops too much, I get chest pain. When the midodrine kicks in, the chest pain stops in my case.

But I totally agree that we are all pretty different.