Another Midodrine Question

[icesktr189]

I am debating whether or not to start it up again. My bp is all over the place, and sometimes when I feel terrible it can be pretty normal (120/70) I worry that my bp would go to high, but I can definitely tell that I dont have enough blood in my brain.

Sorry about asking so many questions on here, my fiance is leaving in 3 weeks to another state for over a month, and I will be left alone with baby. To say at the least I am freaking out. I will have some help, but not like I do now.

I am going to try a 2.5 mg dose. I just cant stand the scalp stuff and I get the goosebumps everywhere the entire 4 hours. But it will be better than I am now at least.

Right now I have severe fatigue, dizziness, and kinda feel like you do right after you get off a roller coaster, that disoriented feeling all the time now. Oh cant forget those fabulous adrenaline surges that last all day long :]

Does this med help with those and the dizziness? I would LOVE to be able to drive if need be. The florinef was giving me too many migraines, so i cannot take that anymore. Its either this or an SSRI, but the adjustment period takes longer than 3 weeks for me, so im PRAYING that this works.

[Sarah4444]

Midodrine, in combination with the MCAD meds listed below does help me. Not enough, but it's better than nothing. I take 10 mg every four hours (or less) and then 5 mg at 7 PM. I didn't really start to do better though, until I added the anti-histamines, etc.

[tinkerbella]

Hi Dani, I hated the side effects so bad that I stopped that and went to salt tabs and vitamin water and coconut water. I also get infusion twice a week to as I loose most of what I put in me. I hope you have family nearby to come and keep you busy while hubby is away. Beef broth is another quickie to have on board.

Good Luck ~

Bellamia ~

[faint factory]

Midodrine has helped me a lot. I don't get scalp tingling or chills the entire time but kind of in waves, and I'm a freak who kind of likes it because it's nice to know it's working. When I need to study or drive I take it and wait for the tingles to hit before proceeding. I wouldn't be able to drive anymore without it. I just can't focus anymore and like you said, I can tell I don't have enough blood to my brain. I make sure to take it an hour before I need to drive and it helps immensely.

My only real problem with it is that I'd really have to be taking it every couple hours to feel "balanced" all day, but no can do. I take 10 mg three times a day (or many days only twice, depending on whether I need to be useful in the evenings or if I want to lie flat on the couch to watch TV).

It has helped quite a bit with fatigue, but I can definitely tell when I'm reaching the four hour mark.

[ladyt]

Hi..

I have for almost 9 years been on a high dose midodrin. 3tabl 3 times a day (one tabl being 2,5 mg).. When i starded the meds i was very ill. I was not abel to sitt for long at all.

When I stardet midorin it was the first med in a long time that actually helped. But it was no mirecal med either. I was supposed to take an even higher dose, but that made my chest jump out of it self..

The first year i was abel to be moore active again, but that changed to quikly back. And a year and a half later i was mostly in a reclained possiton fighting not to be so..

My cardio had nothing more to offer, and the gps i tryed couldnt help me. So then i stayed on the midodrin.

So last mnth i had a sudden change in things. A sudden rise i bloodpressure. My gp blamed it on the gutron, so i was told to lower the dose or go of it. So i did. I also got a hold on a hartrate watch that works better. So finaly i can se what my hart is up to. I dont feel it when it races etc. I ust feel the side effects..

Then i was told to gett back on the meds again. I started whit 1 tabl 3 times a day. That worked fine. Then i tryed to go up. The tingeling and goosbump never really bother me, the other stuff is so much worse. But the worst was the worsneing of fatugie i got. An hour after taking a larger dose my hart rate often goes down to the 80s but after an hour it whil go even higher. The ups and downs are ust to much...

So i think a bigg part of my fatugie and some of my weird brainpain and even fogg has been cause of the meds..

Meds are suposed to make one better isnt it so..? So for once I am not following doctors orders, i am not going to take a lagrer dose midodrin. maby i am getting older and wiser, or ust more dificult

It seems like finding meds are dificult and somthimes nearly imposible. I hope to find some alternative to next apointment whit a cardio. I know they will whant me back on the higher dose, but it my body. And the short time whit lower hart rathe is not worth the rest. Like to day its over a 10o resting. But i still wouldnt take a higer dose... Cause my barin is better and a better type fatuige.. I think what i have had before is was brain mud, ust somthimes a lilte more on the well cant spell the word, not so thik side..=)

best of luck whit desiding if u are going back on midorin, and how high and how often etc etc..

[mwise]

Midodrine was the drug for me. Without it, I was bed, wheel chair & couch bound. With it, I can walk and drive. I take Midodrine 5mg 3xday along with Mestinon 60mg 3xday. I do get side effects with the Midodrine; itchy scalp, parathesis-skin crawling, goose bumps, feeling cold and occasional heart pounding for 5 seconds. But the benefits out way the side effects. I also can tell when it starts wearing off. I do take the Mestinon in between the Midodrine. I think they help keep me in balance during the day. Like many have shared, everyone reacts differently to meds. Feel free to email or pm me with questions.

[Sarah4444]

mwise, can you tell me what the Mestinon does to improve on the effects of the midodrine for you?

[ladyt]

hi i have seen that some here use mestinon. What does it help whit for us whit dys? For when i look it up it for people whit mg...

[mwise]

Hi Sarah4,

I have been on both the Mestinon and Midodrine since January 2011. I take the Mestinon 9am 3 pm & 9pm in-between the Midodrine. I feel it helps to keep the balance when I know the Midodrine starts wearing off with my BP staying up along with keeping me from getting tired/fatigued. I take the Midodrine spaced 5 hours apart. I can tell when the Midodrine starts peeking because the side effects with itchy head, etc...kick into over drive. I can also tell after 4 hours when the Midodrine starts to wear off. I think the combination of both sustains me with activities of daily living such as walking, doing little chores, etc...I also have had atrophy of my muscles from inactivity and also feel the Mestinon helped with muscle strenghtening along with taking away nausea and helping with motility to get my bowels moving again. When I was 1st started on Mestinon itself, I saw my BP increase a little along with less tiredness/fatigue, but adding the Midodrine, I seen a significant change in me going from pretty much bed, chair & couch bound to being able to walk and doing little things around the house-running the vacuum cleaner, washing clothes, etc...Do I have days that I don't feel good-fatigued/tired to the point of laying down doing nothing and resting the day on both the medications-yes, but it is usually because I set goals, accomplish them and try to do more activities that I literally exhaust myself. My Neurologists at Cleveland Clinic warned me also that I would have 3-4 days a month that I may not feel good and expect to rest even on the Medications. I ask specifically why and they said you will try to push yourself more than you should and it will catch up with you. And truth be told-I do have those days and learn to rest and take each day as it comes whether good or bad. I do know it was because of the Mestinon, Midodrine, a lot of prayers-I believe in miracles and help from family and friends that I have some quality of life back again.

[Sarah4444]

Thanks for that info, mwise.