Blackout! Feeling Rough

[flop]

Hi,

feeling a bit down in the dumps at the moment.

I started on Bisoprolol nearly 2years ago and from that day didn't have any more true syncope / full blackouts.

That was until Friday last week when bang down I went without warning. I fell from my bedroom into the ensuite shower room and cracked my head on something (probably the toilet!). I seem to be getting more and more POTSy at the moment with my orthostatic tolerance down to about 2minutes - was over an hour recently. I had a chest infection in December that I just couldn't seem to shift and have had 6 courses of antibiotics for my chest as well as nebulisers for the asthma.

I'm sure that the infection and the POTS flare are related and I'm hoping that it will settle again soon.

My symptoms are making work really difficult as I am on my feet a lot and am supposed to work 56 hours a week. After having to take nearly a month off I have gone back to work and have managed to get my hours reduced a bit but am really struggling. I'm worried about work as I am coming to the end of a 2year contract in August and am currently waiting to hear if I have got an interview for a follow on job.

I know that a lot of you would love to be able to contemplate going to work and just can't so I am being selfish whining about this. Think I need a hug!

Flop

[AJVDK]

Flop,

I hope things start looking up for you soon. Heres a ((((((Hug)))))) From IOWA. Have you talked to a doctor about the POTS acting up more? Do they have any ideas?

Hope thinks start looking up for you soon!

[pat57]

(((((((((((FLOP)))))))))

(((((((((((((AJVDK))))))))))))

SHE NEEDS ONE TOO!

[masumeh]

Hi flop,

Sorry you're feeling down. Regressing can be so emotionally trying. Maybe your meds aren't working well for you as they used to. Did you talk to your doctor about this? Perhaps you should try a new med.

In the mean time, try to keep smiling! After all, two years with no fainting is a big blessing, and a great relief. I've been fainting for five years now, total of over 1,000 xs, and even on meds after diagnosis I still faint about once a week or more. Actually, I don't mind it. I mean, I know it alarms others, and it can be embarassing in public, but it's doesn't top my list of most hated symptoms. Of course, I'm highly aware of it, and the warning signs are always under calculation in the back of my mind. Be really careful when you first wake up....take your time sitting on the edge of the bed, gathering your wits (and blood), before you stand up to go to the bathroom. Maybe periodic fainting is more dangerous than consistent fainting, since you might not really predict it or prepare for it.

Hope you get that lung infection kicked, so you can start feeling better soon!

[bttrflyamby1981]

Don't feel bad about venting.....it's affecting you and that's all that matters. (((HUGS)))

I do wonder how you do it though. I hope you feel better soon!

[lthomas521]

Working 56 hours a week? That's suicidal. No wonder you're having a flare!

[flop]

Hi guys,

thanks for the hugs and support, it means a lot to know that there are other people out there who understand what I feel like. I've cheered up quite a bit so I think the venting and hugs have helped!

Crazy work hours - I know my hours seem excessive but it is what the job entails. I have always been on 56 hr weeks (on average) since starting work in 2003 so carrying on with the work hours after I developed POTS was considered normal. My cardio knows about my job and encourages me to keep working full time - I'm one of those people who always has to push myself. If I sit back and relax I actually feel much worse and my ability to cope with the POTS and even just activities of daily living decreases dramatically - it's as though my body goes on strike on me!

I have managed to get my hours cut to 44/week and switched departments to a less busy job where I can sit down more (orthostatic tolerance is down to about 2-3mins at the moment from over 3 hours standing time on meds last spring.

I saw my cardiologist yesterday and he has given me a script for Midodrine to add to the cocktail of pills that I am already on. He agrees that the worst of the flare is related to my chest infection but the POTS had started playing up before I got the infection. Because Midodrine isn't licenced in the UK they have to get it from Germany and the patient information leaflet is in German! I want to find out more about how to take it and doses before I start taking it. He also said that I should qualify for a disabled parking badge - that would make my life much easier, getting from the staff carpark to my office is 1780 steps (and that is if I use the lift - can't manage stairs at the moment) and takes ages and is exhausting!

I think that the blackout was just a huge psychological blow. I used to have blackouts about 5 times per day until the day I started the betablocker. I had got very dependent on thinking that so long as I take the betablocker that I won't blackout so long as I listen to my body and don't push it too hard. To have a blackout creep up with no warning is very worrying.

Thank you again and ((((((((HUGS)))))))) to all those out there in need of a hug!

Flop

[SunsetParadise49]

((((hugs))))

[masumeh]

Flop,

If you're starting Midodrine, you can find information online in English. ProAmatine (the brand name in the US) has a website with info. Also, make sure you are prepared for a rough week or so, if you can choose when you start it. If your body is responsive, you might feel horrible for the first week, until side effects taper off. Did your doctor tell you about the side-effects? It feels like extreme goose bumps. For me, 10 minutes after the first pill, the bumps started. An hour later, I felt like my hair was flying and even like there were goose bumps on my teeth! This was funny at first, but after a few days, I felt like I was going to go crazy. It also made me manic, hyper, and it was impossible to sleep, (that went on for about 72 hours and ended in a total crash). It all calmed down, but some of the good effects also died down a lot, and I started to faint again. I'm more sound sensitive on ProAm, but less dizzy, so it's a trade off. I cope with the sound issue by wearing ear plugs. Since I wear a scarf that covers my hair, ears, and neck for Islamic tradition, no one can see the plugs and it works well for me in malls, airports, and other noisey places.

Is it easily availible from your German source? If not, you can also order it online with globaldrugs.com or other sources. For us in the US, that's much cheaper, and it's a very expensive drug (for my dose of 10mg/4xsdaily, it's about $5,000 a year w/out insurance, but about $1,500 a year from the online/non-US sources).

I hope it works for you! It might help with your infection too. One great benefit I've experienced is that I don't get sick, as if it has fixed my immune system somehow. I used to get sick frequently, at least once a month. Now, I don't even get the flu when it goes around everyone else in my house.

Good luck!

-masumeh

[flop]

Thank you Masumeh,

I will google for ProAmatine and hopefully get some more information. My Mum did a German degree many years ago and has tried her best to translate the leaflet for me but it doesn't make much sense - I think it is a bit too technical for her German vocabulary and grammar!

My cardiologist has prescribed 2.5mg three times per day. Some of the info I found on line said not to take it after 6pm - what do others do? I asked my cardiologist and he said take it every 8hours, the pharmacist at the hospital just told me to follow the doctors instructions! As I got up at lunchtime today I have only taken 2 doses and will skip the evening one. I got a slight head rush but otherwise didn't really notice much effect from the Midodrine. Those of you who have described sudden effects did you start on larger doses?

I am lucky that my local hospital pharmacy source the Midodrine from Germany for the patients. In the UK we have the NHS (national health system) it has many problems and getting referals and investigations is quite difficult but meds are "covered". We pay a fixed fee for a prescription (about $12) no matter what the actual cost of the drug is. I have a prepay certificate that covers me for all my prescriptions for the whole year for one payment. (I am so glad that we don't need private health insurance here yet).

If anyone has any more tips on Midodrine please let me know!

Thanks,

Flop

[Sunfish]

hi flop -

honestly taking it every 8 hours doesn't make a lot of sense in relationship to midodrine/proamatine's half-life. it only stays in the body about 4-5 hours, so generally people take it every 4-5 hours while awake. generally you can feel it entering & leaving your system; for me i take it every 4.5 hours as that seems to be best for me. obviously you shouldn't make a change without talking with your doctor, but you might want to ask him/her about this. if you print out the prescribing info and show it to your doctor it might help as it sounds like s/he isn't too familiar with it. that said, some people take it "as needed", wherein that could obviously be further than 4-5 hours apart.

in terms of the "not after 6" directive, this is related to the general directive that one shouldn't lay down with midodrine in one's system. thus it's working under the presumption that 10pm is everyone's bedtime and the med is in your system for about 4 hours. as such, if you go to bed at 9, the last dose would be at 5; if you go to bed at 11, the last dose would be at 7. but in reality this "rule" of not lying down with midodrine on board isn't necessarily applicable to everyone. it's something that probably should be discussed with one's doctor in relation to what your BP does while on the med and while lying down. personally i can lay down even with a lot of midodrine in my system. i don't take it before bed, but i can never sit or stand for the entire 4 hours of a dose; even when i could, i was able to lay down for a nap or a rest while on midodrine or if my timing didn't work out right but i needed another dose to safely get myself TO bed, i could take midodrine even if i would be going to sleep in much less than 4 hours. others, however, have to be cautious to the point of not being able to nap when taking the med.

in terms of side effects, i take doses up to 15 mg every 4 hours and have never really been bothered by side effects as some have, so this is different for everyone i suppose. i did initially have the weird scalp-tingling sensation, but it was simply weird...not really bothersome. i've had this a bit every time i've increased a dose but it's always gone away for me within a week or so.

i hope this helps,

melissa

[flop]

Thanks Melissa,

from the reading I've done so far it seems that the not taking midodrine before lying down is to prevent supine hypertension? My BP is actually "fairly low" when I lie down (about 105/65).

I couldn't get hold of my cardiologist but talked to another dr that uses midodrine in his elderly patients. He said that as I get up such a lot at night to use the bathroom (high fluid intake = high urine output) that I should have midodrine on board at night to prevent syncope when I get up.

I wonder if I would be better taking it 4 times a day so that it lasts better?

Is 2.5mg a normal starting dose? I haven't really noticed any effect from it and my BP has hardly changed either. It sounds like it usually works quickly rather than having to wait for the effect to build up like with florinef?

Sorry for all the questions - I want to give this the best shot I can.

Flop

[Guest tearose]

Loads of hugs out to you flop...and all!

I am sorry it has been a rough spell. Those who take meds do say that the adjustment period is sometimes harder than one is ever prepared for! I hope you are able to hang in, without falling on the floor, and find just the right cocktail that helps you.

you are not alone, just be careful as you go through this adjustment period. We don't want you to get hurt.

best regards,

tearose

[flop]

Thanks tearose,

Midodrine is a bit of a last shot at the moment. Unless I get a dramatic benefit from it I am having to seriously consider using a wheelchair at work. My work involves a lot of standing / walking about and making important/complex decisions whilst on the go. Whilst I haven't had syncope a work for a long time I am having them at home now. I am particularly aware of decreased blood flow to my brain at work as my concentration and thinking ability has dramaically decreased which is putting my career on the line.

Does anyone else use a wheelchair to get round this sort of problem? It would be an easier decision if I was constantly blacking out rather than "just" having concentration problems.

Thanks for the worry about injuries too - I'm covered in lumps and bruises at the moment. The worst bruise is actually on my hand from an IV on Monday evening. I was too ill to get home from work on Monday so had to get an IV to boost me - have never had to do that before.

Flop

[Guest tearose]

While you are figuring all this stuff out flop, just get yourself a wheelchair!!!!

You don't want to loose your job and I am sure your boss will want to accommodate you rather than have to "let you go".

Just don't feel bad about getting a request in for one. It may be you only need a wheelchair for a few months. Just do it dear!

It is still early Sunday morning here but I am sure morgan has lots of wisdom on wheelchairs...and ernie is MIA but even got a scooter, I think.

Anyway, do what your gut tells you will help you through this rough time.

If you need it, get it.

It doesn't mean you will always need a wheelchair, you just need one for now.

I'll be bothering you tomorrow to be sure you attended to this!!!

best regards,

tearose

[masumeh]

A quick point on the laying down thing...when I read the Midodrine leaflette, I kept myself from daytime naps out of fear of supine hypertension. But then my cardiologist reassured me that this warning is for patients taking Midodrine for Parkinson's Disease and some other things that don't relate to POTS.

My starting dose was same as current dosage: 10 mg, 4 xs a day (actually, the starter was three times, but when I reported dizziness at the ware off time 8PM, he upped it to a fourth at 8PM). It can be taken as close together as every three hours, according to the ProAmatine website. I generally take mine at 9:00AM, 12:30, 3:30, 7:00PM...I worked out the schedule for myself because it wares off for me at about 2.5 hours after taking the pill. Waring off gaps is usually when I faint.

If 2.5mg isn't working for you, tell your doc and he'll probably up it to 5mg. I think 5mg 3xs a day is the usual dose (usually, it's "upon waking up, 11AM, 3PM"). My 10mg was an aggressive move on my cardio's part, I think. My case was judged to be severe, I guess, and he warned me that I would have a horrible time with side effects, but that this would pass within 7-10 days, and it did. Also I was traveling for treatment; maybe if I was resident he would have had time for gradual increase.

I wrote the side effects down at the time to discuss it with my doc (memory problems, my note book is great support). The note says,

stiff neck; shortness of breath; tearing; weepiness; tenderness in stomach; stiff limbs and fingers; goose bumps; headache; muscle aches (back, arms, legs); pain in chest.

There's a note that says, "*most severe 1hr-1:30minutes after taking pill"

Another part of the note says: "Benefits- no fainting; feel better in head (except for headaches); not as tired, just feel heavy"

There's no build up. You should know the first day if you are responsive or not.

[yogini]

Hi,

I was prescribed midodrine 2.5 mg a few weeks ago. My doctor prescribed it 3 x/day, but told me it was OK for me to skip a dose any time. ( (In reading through the posts on this forum, it seems most people take 10 mg 3x/day.) So I have been taking the midodrine only as needed. I actually started out with 2.5 mg and didn't like the side effects, so I cut it to 1.25 mg. I can feel the midodrine when it starts to take effect and also when it starts to wear off. At first I got really dizzy at these times, but this seems to be getting better. I have noticed that, when I do take it, it gives me more energy and I can also walk faster - my body just wants to walk faster without my even trying, if that makes sense.

My BP is naturally very low (90/60), but I still don't feel comfortable lying down on midodrine. My doctor told me it is better to avoid taking it if you know you're going to be lying down. 2.5 mg is a very low dose, but still probably not worth the risk.

I have had to up my beta blocker in the last couple of months, and I am hoping I can slowly incorporate midodrine more and pare back on the beta blocker, which makes me dizzy and tired. Since the side effects seem to be getting better, I might try to up my dose to 2.5 mg.

Like you, my POTS had been in check for a while and I suddenly started having stronger symptoms due to some unexpected stress -- among other things, I also work long hours at my job. Now that the stress has been alleviated, I am hoping that things will even out in another month or two. I hope the same for you! Let us know how things work out with the midodrine.

-Rita

[flop]

Thank you tearose,

I'm not sure if I should be nervous of you now - I guess you are too far away to do any lasting damage to me? (tongue in cheek!)

I've started a separate thread about wheelchairs as my poor fogged up brain doesn't cope too well with thinking about more than one thing at once.

I've now been on the midodrine for 2 days and can honestly say that I haven't noticed any benefits or side-effects either. I took a double dose this afternoon (5mg - naughty I know, just wanted to see what would happen) and still can't tell any difference. I'll go and measure my BP in a minute to see if the numbers have changed at all. I'll keep you all updated if there is any news.

Keep standing (or trying to),

Flop

[becky]

Hi Flop,

i know how you are feeling at the moment - i had three months without passing out then got an infection in my jaw under my wisdom tooth and BANG i hit the deck in the doctors reception area! apparently i made a really loud bang, the nurse ran out and said, "is that Rebecca again?". Anyway been having horrid chest pain and breathing difficulties so after four appointments they are finally refering me to a cardio. I'm trying to stay medication free but finding it increasingly difficult as like you my orthostatic tolerance seems to have gone through the floor. i find that i'm swaying! My doctor agrees that the infection has probably been what has started my pots symptoms again. It really gets you down doesn't it? i find it really hard to get perspective on it. I definitely applaud you on working, i'm going for interveiws at the moment and that is really tiring me out! Do you still drive? I'm not allowed, have to have 6 months free, so having fun on the buses in bradford and leeds - applying for my disabled travel pass. Anyway - i'm sorry this is so long, i've completely forgotten what i was going to write and what i was answering, sorry, bloody brain fog.

Big Hugs anyway,

Becks x x x

[Guest tearose]

Okay flop, I won't bother you about the wheelchair since you convinced me you are not shy about asking for help if you need it!

best regards,

tearose

[Guest dionna]

i didn't read all the post but i did want to tell you that i am happy for you that you have been able to work. of course i am jealous... lol... but seriously... i hope that you get to feeling better and i wish you great luck with your job and interview! i think it is awesome that you did so well without full syncope for that length of time... again i am jealous... at most i can go about a few weeks. lol.

i hope that you get to feeling a lot better really soon!!! i know it is hard no matter what level of symptoms you are experiencing!!!

dionna

[flop]

Tearose - please don't feel offended, honestly I'm greatful for any advice and encouragement. I'm better at talking about things than actually doing them.

Becky - sorry to hear that you've had an infection and flare too. If only we could keep from getting infections? I seem to catch everything going arround from colds and stomach bugs to my latest pneumonia. It usually results in people saying "there's always something wrong with you" which usually seems to mean that they think I am a hypochondriac!

Dionna - thank you for being jealous - it reminds me how lucky I am compared with others on this site.

I guess that I have just been so fortunate to have such a long time of being relatively well. I am currently no where near as ill as I was a few years ago but am having a harder time dealing with this psychologically second time arround. I had got used to my limitations and could modify things (or get other people to do things for me like cooking and laundry) to enable me to continue working.

My GP (PCP) has always said that there are hurdles placed in front of me and I climb over them, then that the hurdles get higher and higher and I keep on climbing over them. Perhaps I have reached the point where the obstacles are just too high to climb/drag myself over?

Flop

[Guest dionna]

think of the hurdles as only being just an inch higher when lifting weights i think, it is just a pound or two heavier or when i am about to pass out... it is just one more step and you will be to the chair or bed lol.

you are strong and i know you will make it over these "hurdles". i have faith in you! best of luck to you!!!

dionna

[Guest tearose]

flop,

I'm glad to hear you feel you have thing under control!

It is when someone feels they don't deserve an accomodation, like a wheelchair, that we gently encourage each other!

tearose

[flop]

Dionna - I wish I could even dream of lifting weights! I struggle to carry more than half a bag of groceries from the car to the front door. Carrying things seems to really exacerbate my POTS symptoms - I can loose my vision after only about 10 paces when carrying things.

Tearose - I think that I deserve a wheelchair and it would be very helpful, I just don't think that my doctors or employer would approve. Work may say that it would be a dangerous environment to have me use a chair in - I don't want to become a health and safety hazard to other people. However if I have a blackout at work I would really be a hazard. Last time that I was actually blacking out at work I got sacked so I am very conscious of playing the game right with my employer and saying the right things - I could be building a rod for my own back by investigating this option.

Argh decisions, decisions!

Flop