iheartcats

Hi Meg,

I am in cardiac rehab.

I do exercises for my quads, biceps, abd, add, and spinal muscles. It helps me have more strenghts in my legs when I stand. As you know I have been bedridden and in a wheelchair for 7 years so I have to rebuild my muscles. I am starting from scratch. I do everything on the floor to avoid fainting.

That's quite a schedule. How is the Rehab going? I hope it's helping you - starting from scratch can't be easy.

Hello -

I've used up almost all my time off work for medical reasons - and there are six months to go in the year. I should be eligible for FMLA in October so...fingers crossed.

I was seeing two specialists who are familiar/treat POTS but have recently asked the specialist I have a good relationship with if he could handle my 'primary POTS care' and the other specialist could be used for an emergency (such as an extreme downturn, etc.). He is fine with this. He is an electrophysiologist who understands and treats patients with POTS. The other specialist is very good with POTS, but I feel I've done all I can with her at this point (tests, treatment options, etc).

I seem to be on a Midodrine dosage that helps a bit, I know I have to push myself even though I get extreme fatigue sometimes, I know I have to drink lots of water and G2 and eat salt...

So if one is doing what they can and symptoms are within a 'normal range' of what one is used to - how often do you/should you go to a specialist? My specialist said every three months was ok if I am comfortable with that - of course, if something gets worse to call - but with POTS there isn't a lot of immediate things that a visit is going to do. It's not going to make you 'better' once you are doing what you can.

This is hard for me because usually you have an illness, go to the doctor, get better. But POTS just is ongoing and I've never had to deal with something like this. It's hard to admit there's nothing the doctor can really do to 'make you any better' - you reach a plateau sometimes and hope things are GOING to get better.

He has secured me an appointment with Doctor Grubb next spring...and he'll take his input and we'll continue working on my treatment.

I also hope to do some cardiac rehab after FMLA kicks in...but again, this will just be part of treatment.

This is somewhat of a rambling post, I apologize, but I have been stressing over this (which isn't good for POTS either!). I can't afford to go to the other specialist monthly to simply discuss how I feel and have my blood pressure taken. And my electrophysiologist doesn't think that's necessary - only if I get worse. And of course any 'normal' sickness would go through my PCP.

POTS is hard for me because it's not curable. And you can't get to 100 percent. Maybe not even 80 percent. You just maintain.

My doctor initially prescribed my Midodrine to be taken every 8 hours, including a dose at bedtime. The reasoning behind this was that I had to get up several times a night to go to the loo and would often collapse in the bathroom. I took it that way for several months and didn't seem to come to any harm from it.

Flop

Yes - it seemed not to really bother me so I'm glad. One less thing to worry about amongst all else.

Thank you everyone!

Hi,

I would not worry unless you felt very poorly/unusual. You didn't list any BP's that qualify for hypertension, so likely especially on a somewhat small dose it isn't going to do anything negative.

For the most part I do not think most of us have to worry about the supine hypertension associated with midodrine. It sounds like your dr. wasn't worried, so unless you start feeling unusual it is not likely going to be a problem. Even if you got hypertensive for a short period it is not likely to cause much harm in most people.

I guess just listen to your body, but don't worry too much, it normally is not an issue.

Thanks - this made me feel much better!

My doctor has told me to take 5MG of Midodrine an hour before I get up in the AM - that it usually doesn't bother POTS patients lying down (the people who tested with high BP were all Parkinson's Patients).

I've been doing this without issue, but today I accidentally overslept...by 2 additional hours! I guess I was really more exhausted than I thought.

I got up and took my BP lying on the couch...and it was 120/80 (higher than usual) than varied between 115/120 and 75/82.

I feel ok...I'm just nervous that I was lying down for 3 hours instead of the 1 she recommended after taking it in the AM.

If it did any harm would I have any signs? Or was taking my BP lying on the couch the best way to check?

I am now up to 5mg right when I get up and 2.5mg at lunch.

I think I could handle 5mg/5mg (as the 5/2.5 combo actually seems to be helping).

But I have to wait until my appointment at the end of the month.

I have not noticed any elevated blood pressure on the 7.5 so am thrilled about that.

Any other Midodrine stories are appreciated!

Ernie -

I think 2.5 may be a bit low - it's not doing much...it's helping a tiny bit, I think, but I can't be 100% sure as I've been hot all day. My doctor is out of town all week but said I could upgrade to 5mg twice a day after one week (and I have a BP Monitor that's fairly accurate and since it has a short half life, if it does increase my BP, just don't take it again).

Everyone -

Do all of you take it one hour before getting out of bed? I have a hard time doing that with work. I'm lucky to be able to take it 30 minutes getting out of bed. The doctor said go for an hour, but what if you take it and 'slowly' get up and get ready?

Monitors -

I like the sound of the wrist one...

My doctor has prescribed 2.5mg in the AM before I get up and 2.5mg at lunch. She has said if that's not enough we will consider 2.5mg three times a day or 5mg twice a day.

I stayed at the office and my blood pressure didn't change much the first and second hour after taking it, so apparently that side effect can be ruled out (is this something to worry about in the future...or is this something that should've happened on my first dosage if it was going to shoot up)?

Well - my heart rate seems lower. I've taken it a few times (as did they) and it didn't go to over 100 on standing like it often does.

But my doctor wants me to monitor myself for the next few weeks to see if it is improving my POTS. I'll know if I feel better, obviously, but any other suggestions? Does anyone use a Polar or other type Heart Monitor?

Any other things I should look forward to or watch for with Midodrine?

I used Claritin for years and it was ok, but now take Allegra and it works much better and does not make me drowsy.

In the spring and fall, I also use 'Nasacort.' I tried Flonase but had side effects. Nasacort works really well, though.

I've been taking Ambien for about 2 years. I take 1/2 or 1/4 of a pill and only do it occasionally. A vial of 30 pills lasts me more than a year, so my doc and I aren't too worried about addiction. But it is essential to get me through the stressful periods and the time around my menstrual cycle when I can't seem to sleep for the life of me.

So you only take 2.5 or 5 milligrams? I take a 10mg about 4-6 times/month and it does not seem to worsen my symptoms. It helps me sleep, readjust my schedule (which seems to move off course very easily...), and sleep during stressful times so I can function at my job.

Sometimes I worry about long-term effects, but then I have to work so I can't 'not' sleep...at least not for 2 days in a row. I know everyone has a bad night now and then...but too many of those plus POTS are not good.

Ambien ruined a year of my life. I liked it, it made it easy to fall asleep, and I just thought I was (separately) getting worse on a bunch of symptoms. Finally I realized it was mostly Ambien. You aren't supposed to take it for more than a couple weeks (but docs always thought it was benign). Personally I don't do well with benzos either.

Would you mind elaborating on how it effected you? I don't notice any increased symptoms after I take it, but I only take it a few times a month.

I'm still waiting to do this...but they think it will help...

I tried a few and found that Seasonique works best (but my is it expensive).

The 'placebo' week every 3 months actually has a tiny dose of estrogen and all this seems to be helpful.

If I was back to the monthly pack I couldn't stand it - my symptoms get so bad during that time.

Good luck!

I get by on a desk job too - and feel exactly like you do. I don't really have the option to work 30-hours/week (although I agree...I think that would be ideal...or a 4-day/32-hour work-week so that extra day could go to my 'chores' and 'life stuff.') But I've actually found it hard to find a job that's not either part-time (15-20 hours/week) or full-time (40ish hours/week).

I count my blessings in that I usually work 40-44 hours/week at a full-time gig. I have friends who have 40 hour jobs that have to put in 50-55 hours for and I couldn't do that.

It's sometimes difficult, and sometimes I think I push myself too much (with work + home stuff)..but I manage. I think you're body starts adjusting and you somehow get by.

It is very interesting how medicines work so differently with POTS. Ambien actually can make me have a 'better next day' and since it doesn't bother, the doctor isn't concerned about me taking a few pills a month.

Now Tylenol PM makes me feel pretty crappy the next day, so I don't take that. Doctor said she'd rather have me on Ambien and functioning the next day than Tylenol PM and drowsy/hungover feeling.

I guess I just hope someday I won't have to take this stuff. I tried no caffeine for a month (ahhh!) and didn't notice a difference. I've never got a 'big boost' from caffeine, so maybe it doesn't affect me as much as some people.

For the person who posted about sleep apnea - 1. How did you guess/find out you had it? Are there signs? 2. Why is Ambien bad to use with it?

My doctor is suggesting this, too - so I'll just thank you for posting this!

You take it before bed? I'm not on it yet, but I've read about it and it says you can't lay down after taking it. Is that true?

Also - I see some of you say it lowers you BP. I thought it would raise it.

I'm apprehensive about going on medication (obviously) but am going to have to. It's interesting to see how it effects people so differently.

Hello,

I've had insomnia on and off as a kid - then it got better in college - then worsened again. A few years ago I was given Ambien and take them 'as needed' which probably averages about 4 times/month now.

I know some people take them continuously for years with no issues...but I also know they aren't recommended for long term use.

My doctor feels ok with me taking them on a limited basis (30 pills easily last me 5 - 6 months) because when I go without decent sleep my POTS symptoms get really bad and my work and life suffer. The 'benefit' of Ambien a few times a month outweighs the 'negative' of suffering with constant poor sleep. My sleep schedule gets thrown out of whack easily and Ambien can help fix this. Or if I have a stressful day/time Ambien helps me sleep when otherwise I'd lie there until 4am.

I wondered if anyone else takes Ambien or other sleep-meds as needed and has this helped or hurt you in the long run?

Is there another medicine I should look into that's safer?

Oh that really is awful. I've worked for years trying not to let what others say/do effect me as much. I used to take things a lot more personally...and this was before POTS.

I am sure this coworker was just taking their bad day/month/whatever out on someone and it no way reflects on you. Just try to think when others act rude or aggressive it's something wrong with THEM and it is not YOU.

Now, obviously, a change what happen overnight. But overtime this has really helped me and knowing it could affect the ANS system - it's even more crucial for us.

Ernie's result makes a lot of sense....I never thought to explain it that way.

But I know what you're going through, if that helps. I haven't even tried to explain it to most coworkers, who knows what they think is going on with my life (I actually blurted "It's Not Cancer" to this one guy who was being a bit nosey)!

I think your significant other is trying his best - deep down I think certain men do worry and just don't know how to express it so 'sucking it up' is a way around those emotions. At least that's what I tell myself!

Oh thank you so much. I'm so much less hesitant about trying this now (and my doctor will be relieved - I think I'm driving him nuts with my resistance).

You don't know how much I appreciate your answers!

Hi Jen,

Midodrine works right away and only lasts in your body for 4 hrs. There are some other POTS drugs that take a few weeks to kick in, but midodrine is not one of these. I started out with 1.25 mg (half of the smallest dose). If you're worried about work, just try it over the weekend and you should be fine by Monday either way. I've taken midodrine with birth control and it wasn't a problem. Have you tried compression stockings?

I want to try them so bad, but don't have a prescription yet...Doctor wants to try meds first as they think stockings will be too hot for summer...is that true?

Just wanted to say Congratulations. It's good to hear positive news sometimes!

My doctor wants me to try Midodrine and go from there...I've been reluctant because I can't go on FMLA from work until later this year so I've just been 'coping' with fluids/salt and just getting by (not fun).

From all I've read it seems like people have various reactions to medicine and you really need time off to stabilize and find what works for you.

Are any of you working/unable to take time off and using medication to help? Did you have to suffer through or did you get lucky and find a right dose/combo?

Any horror stories of Midodrine? Can it be taken with BCP or will it be dangerous? I cannot imagine having to go off BCP because that time of the month makes my symptoms unbearable in addition to giving me migraines.

Thank you!

Well... I won't know much of anything for more than a week.

I have to take in a list of 'limitations' from my doctor (not sure what this is?)...is anyone familiar with this? I know I have to have air conditioning at work and can't stand for hours on end. And we have air conditioning and I don't have to stand for hours. What else are they looking for? I don't want to back myself into a corner and out of a job.

I'm not eligible for FMLA for about five months. At this time I can:

1. Present the treatment plan and see if they accept or not.

2. Try to 'suck it up' and forgo treatment until FMLA kicks in and my job is legally protected.

My doctor thinks I can try some medicine (but I'm worried about a bad reaction) and needing time off even for that. When I get a flu or something I'm out for days...before POTS I 'rebounded' better. So that's part of my problem. I'm using up my vacation and sick time rapidly.

Thanks for your input.