Bad, bad day

[danelle]

Hi all, I need to vent a little and get some advice. Today has been horrible for me I went to work and was there only an hour when I had a spell. I was sitting at the desk and I felt like someone had hit me on the head with a ballbat or hammer. I could feel myself going out. I put my head between my knees and was able to compose myself after several minutes. When I was able to get up, I went into an empty pt's room and checked my BP. It was 130/72 which is high for me(normally 90's/50's60's). My heart was pounding but my HR was only 78!! I continued to feel somewhat disoriented even though I could function(somewhat). I tried eating something and sitting for a while but still was extremely dizzy and weak beyond words. To make a long story short, I ended up leaving work-had my son come and pick me up because I couldn't drive

I came home and took a 3 hour nap!!! I do feel some better, but continue with the dizziness and weakness.

This is the 3rd time I have had to leave work in the past month and I have had to call in and cut my hours back to near nothing. I am now working 4-8hours/wk and it is not paying the bills

I have had POTS for 17 yrs but recently dx. I just wonder is something else is going on as well. I have had every test known to man and they all turn out ok. I just find it hard to believe that this thing can cause so much turmoil. ...

The only meds I am on now are atenolol and clonazepam. Dr Grubb wants me to try Midodrine and Florinef(but not at the same time) Being the nurse that I am, I have read about all the side effects to these meds and boy are they scart

I am ready to give in to this thing and check on disability. I can't keep playing with my job because I am going to lose it. I can't function well at home much less at work

I do drink tons of water and gatorade as well as the salt thing.

Now I am afraid to drive because what if this sensation hits me while driving??? I could go on and on but I won't, thanks for listening

Does anyone know if you have to have tried every means of tx before you can apply for or receive disability and how long it takes to get it???My family can't make it long without my income. Somebody please help--I feel like I am going to lose it, I am getting EXTREMELY depressed

[futurehope]

Money or no money, I wound up feeling like you did on the job and it was IMPOSSIBLE to continue. My husband did all the driving and then sometimes I would tell him he had to drive me home. HE finally told me to resign. I would worry whether or not I would survive the day and it all got me in a state of anxiety on top of everything else. Trying to continue behaving as if nothing was wrong so I could keep my job, etc. etc.. Anyway, I feel like I had no choice. I applied for disability in June, 2003. I am now at the point when they schedule an ALJ hearing. I hope I get it. If I don't, what am I supposed to do? If I cannot work, I cannot work. Besides, not only was I going to keel over, but I was going to have a nervous breakdown on top of it because I couldn't cope with feeling so bad so often. Nobody in their right mind can sustain a job feeling that poorly that often. Would you expect somebody else to keep working if they felt like you do?

Only you know what you're going through and only you can make a decision.

Anyway, I certainly wish you the very best. I totally understand where you're coming from. Life isn't fair sometimes, but you can't blame yourself. You mean well and you've tried. Don't beat yourself up for having something wrong with you.

[danelle]

Futurehope,

Thanks a million for responding to me.! I sure need some support right now. I know exactly what you are saying, exactly. I just feel like such a failure as a wife, mother, nurse, etc etc etc. I really don't know what we will do without my income but right now I honestly can't do much of anything. Even typing is making me all shaky This thing makes me angry and sad and helpless all at the same time. And no, I definately wouldn't expect someone else to work under these physical conditions. I guess we are just too hard on ourselves.

I sure hope you can get your disability too !! Would you mind sharing with me what you tried before you decided to file for disability(as far as meds and treatment go) and what steps you have to take to get started with it??

Good luck I will be praying for you and keep us updated on how things go!!!

[MightyMouse]

Danelle, in addition to the fluids you're taking you, you could probably use support hose and see if that helps stabilize things for you.

I've found that as I get older, my symptoms have increased. I didn't have major side effects with midodrine--just the skin crawlies/goose bumps. I did GREAT on florinef for many years and then took a break from it for some testing. When I tried to restart, it shot my bp way too high. Go figure couldn't begin to hypothesize about why.

It took me a long time to come to grips with the fact that I needed medication in order to function. Midodrine might be the easier one to start with because if you *do* have a bad reaction, it's only in your bloodstream for about 4 hours.

Nina

[futurehope]

Danelle, At the point that I filed, I really had not tried anything since the doctor had not suggested anything (except maybe salt, water, support hose). Regardless of what my doctor was or was not trying for me, I could not go on. It became ridiculous. What good was I to anybody if I was an invalid in a hospital or mental institution? Since then, I've tried midodrine (gave me headache), florinef (gave me heartburn), support hose (doesn't really do anything except make my legs feel cold), timolol (made me feel bad). Currently, I'm on a quest to find out what is causing my POTS and the variety of other symptoms I have. I have been pushing my neurologist to help me with this. I'm in the "ruling out" phase. Right now, I'm working with an endocrinologist to see if my adrenals are "low". This is something I've just learned: Addison's disease means your adrenals basically don't work at all, but some people don't have Addison's, but they DO have adrenals that are below normal in output. My endo is treating 2 POTS patients with cortisol and they are much better - not 100 percent - but functioning and have a lot more energy. The cosyntropin (ACTH) stimulation test does NOT test for this. That just tests for Addison's. I asked for the "next" test: insulin stimulation. That test will tell if I have poor adrenal output. I sure FEEL like I have poor adrenal output when I look at some of my symptoms. I'm determined to look into this. Most doctors, when they see that your adrenals do respond and that you don't have Addison's, well, they just stop there. Anyway, I'm not stopping. I want to keep plugging away until I know as much as I can to help myself. In the meantime, I try not to be too hard on myself with what I can and can't do. I ask myself how I would treat someone ELSE in my shoes?

[Merrill]

Hi Danelle -- How are you feeling tonight? I hope you're on the mend after that horrific day you had. How terribly scary! You did exactly what I would have done if I had been hit like that... get the heck out of work and take a good long nap! Whatever feels good and right when you get sick, you should do! (I had a similar-but-not-as-bad spell over the weekend ... after resting and drinking gatorade, I found that the only thing that made me feel any better was to get up and eat some protein [grilled chicken])

I know you're a nurse, but I don't know much about your work environment. It's my guess that you're under a fair amount of stress--I imagine that working in a health profession and dealing with the public would be enormously challenging. But are your colleagues supportive? Are they kind? Do they know what you're up against sometimes--and are they compassionate in response? (Or do you feel like you're off on your own, unable to share? This would be very bad...) I'm hoping that you work in a place that represents something more than a paycheck--or that the work you do provides some kind of payment you put in your soul, not in your bank.

All that's to say, I'm a firm believer in work and in staying connected as much as you can to a kind of work--and to a kind of place--that can be sustaining for you. That may ultimately mean finding a different workplace or a different type of work; it may also mean cutting back your hours even more than they are right now until your symptoms normalize and you figure out why there's been a change in your physical health. If you can work one hour a week, then do only that until you're ready to do more.

Nina/MightyMouse makes a good point about the meds. It's true that there are known POSSIBLE side effects... but a couple reminders: 1st) you won't know how you'll react unless you try and 2nd) even if you experience side effects right away, you have to stick it out for a few weeks--many people seem to report that those side effects go away! That may happen for you too--and you just may feel better. The fact that you're in the care of one of the leading POTS docs--and that you've been experiencing an increase in symptoms--makes me think it might be time to give him a call and even to try midodrine under his supervision ... or florinef.

I hope you'll take this letter in the loving spirit with which it is written. I haven't any advice to offer as to how to go about getting disability, except that people have successfully done so after long battles, which I've read about on this Forum and on NDRF.org. Most of all, I hope that you get better soon--keep telling yourself that you will, that this will pass! (It just has to, doncha know! )

All the best,

Merrill

[ethansmom]

You can vent here anytime you'd like- we all do our share of that sometimes Reading your post brought back memories for me, that's for sure- I tried so hard to work at first, but it came to the point where my employer basically told me I needed to make up my mind- come to work or leave- so I had no choice but to leave after a two week spell where I couldn't get out of bed. They were kind enough to cooperate with the unemployment office, and I was able to get full compensation for 9 months, which was a godsend. I got pregnant during that time and my unemployment ran out just before Ethan was born, so it was a tough time for a while- but we ended up moving to a less expensive area and it all worked out. I haven't been doing as well for the past year, not well enough to hold down a full time job for sure- so I've been selling on e-Bay and I was working for a while at my doctors office until they shut down...so we've managed to make ends meet. Since you have experience in the health care field, have you considered working from home doing something like medical transcription? If that's not feasible, then don't feel bad at all about applying for disability- it's supposed to be there for times like this. I hope you feel better!

[morgan617]

danelle, i was a nurse for 30 years and the medical profession is so intolerant of illness, it amazes me! i finally said this is enough, but nursing is all i know. but i was so afraid of hurting someone i had to quit. i was very fortunate, i got disability on my first try, so it does happen. it is a 7 month procedure whether you are accepted or not, and i wasn't allowed to make any income while we waited. only you and your doctor know if it's time. it was actually my doctor that said enough, you can't work anymore. if your doctor is very thorough and takes great notes, it helps alot. i don't know if it made a difference, but i had 6 jobs in one year trying to find one i could do. it just didn't work anymore. it was very difficult as i have worked since i was 14. only six weeks off for babies and a surgery. nursing is horrible on the body and very stressful which are not a good combo for our problems. i hope you are feeling better now and can make some big decisions. by the way, i haven't driven in over a year except once for an emergency. good luck! morgan

[goldicedance]

Dear Danelle,

I join my fellow POTers in their advice and support. Hang in there, babe, as they say.

I agree with Merrill (who incidentally wrote a wonderful message of support that I could never hope to duplicate) that you need to try the medications. Like Nina, I would say that Midodrine would be a first line attack given its short life span in your body. Also, as others have said, doses should start out small and then increase depending upon your symptoms and your reactions to the meds.

At the beginning stages of POTS, life can be pretty scary. There are other meds that can also help with POTS--for example, neurontin, celexa/zoloft, clonidine, phenobarbitol, ritalin, octreotide, etc.

You will find that there will be good days and bad days as well as good months and bad months.

It is important, as I am sure you know from your nursing experience, to consult with various specialists. When I first developed tachycardia (back in 1994 before POTS was really on the radar screen), my internist sent me to an endocrinologist for a series of tests to rule out such things as a pheocrysitoma (spelling way off), as well as other endocrine disorders. The number of 24-hour urine collection studies were endless. She also thinks that Lyme disease was a particular trigger and put me on iv antibiotics. After several bad flare ups with hospital stays, the endoctrinologist was able to rule out Cushings/Addisons disease.

I also have high blood pressure so that meds like Florinef and Midodrine make it more problematic. Florinef gave me horrendous migraines and midodrine gave me the chills and itches (which you can live with as long as it helps with the real POTS symptoms. I also was taking beta blockers to smooth out the sinus tach, help with PVS and PACs and help with the blood pressure. My EP said that given that my blood pressure was lower at night when I was in a supine position that the spikes during the day were not a real cause of concern.

Keeping as active as you can also helps. Even though you sometimes feel that you would feel the best staying in bed all the time, that is probably going to worsen how you eventually feel. This type of deconditioning does not apply just to POTS people, as I am sure you know. However, with POTS, the deconditioning accelerates and pretty soon you are on a downward spiral.

The road ahead can be long and winding but keep the faith! Eventually, I hope, you will find doctors who can help you. Don't settle for less than the best. Change doctors if you have to. Worse thing is for them to tell you it is "in your head." That is always the quick and dirty response.

We're with you all the way! Good luck!

[danelle]

Thanks to all of you who responded!! And I always take what all of you say lovingly so don't worry about it. I know I need to try the meds and I am ready to do so. I just need to wait until either I'm at work again or someone will be home with me most of the day. You all are right, I won't know until I try-It's just the fear taking over right now. The whole thing is scary.

As for work, my coworkers are very supportive even though they don't know anything about POTS other than what I have told them so they are very supportive but I don't think they quite get the gist of how debilitating it can become.

I went to bed early last night but I tossed and turned. For right now, I feel somewhat better but still weak and shaky This thing is just so unpredicatble-one minute you are feeling descent and the next you are crashing..

Thanks for everyone's concerns-it means so much to me. I am still pretty depressed today though. It just keeps getting worse. I'm sorry if I missed anyones questions. I will look back and check and reply if I did. Thanks again, you all are great and I don't know how I made it this far without you guys!!

[purplefocus]

Danelle,

I too am a nurse. I tried to work after being diagnosed and lasted for 6 months barely. My coworkers were wonderful it was the higher management that didn't understand. At first I got help from other nurses and was able to take frequent breaks but then I started passing out at work and one morning I actually passed out in a patients room. Well needless to say I became a huge risk management problem. Also, I started worrying about putting my patients in danger when I had brain fog, when things I had done for 15 years now wasn't quite clear to me. They asked me to resign so they wouldn't have to terminate me. I opted to take a medical leave in hopes I could return but things haven't gotten better and my doctor encouraged me to file for disability. I did that in March of 2004 and I just sent in my second set of questions and answer forms that the SSDI has asked for. I was severly depressed and my doctor put me on medication for this, it is helping but what has helped most is the fact I am making myself come to terms with I may never be as I was before so I have to develope the new me into a functioning and coping woman. I have 2 children and a husband, my youngest is only 2. You have to find your place with this and try not to get too lost in the depression. If you aren't already on something maybe you should ask for something to just get you thru for awhile at least. Everyone on here is great and you can always find someone here that will try to help you get thru whatever you are experiencing. Sorry about the rambling. I just know where you are and want to help that hurt some.

Paige

[Deb]

Danelle,

There isn't much I can add after all of the great advice you've already been given. I do want to tell you that for me, the midodrine and the florinef basically saved my mental well-being. I was getting so depressed not being able to do anything that I started having thoughts about suicide. Fortunately I had someone to talk to about it. The midodrine works almost immedietly. I can feel it eight minutes after I take it. Nina is right about trying it. It only lasts four hours. So if you can't stand it, it's gone very quickly. Florinef takes longer to start to work. It was a couple of weeks for me, but I've heard that it's not so long for others. If I could only have one of them, I would choose Florinef because it had less side-effects for me. But everyone is different. Midodrine can cause your hair follicles to stand up (all over your body!!!!) which feels like chills and tingling and sometimes a little like your skin is crawling. At first I didn't know what it was. I thought I had another weird symptom of POTS, but it mostly went away after a few weeks. I got used to it. I have become intolerent of the Florinef now. Like most people with POTS, I have severe reactions from medications. The Florinef was effecting my breathing. I felt like I was having an asthma attack, but my inhaler didn't relieve it. I was taken off of it as of yesterday. But it worked great for almost six months for me.

I sure hope you get some relief soon. Keep up posted as to how you are doing.

[sally]

Hi, Just wanted to say we take Midodrine as well and found that it was the miracle drug for our family, (there are 3 of us who take it). It is the only thing that helps us function somewhat normally and able to think more clearly. I just wish I'd had it many years ago. Any side effects this drug gave us, which were very small, is well worth the positive outcome for us. We only noticed the chills in the beginning and haven't had any additional side effects as yet, it was only temporary as well as the drugs life span in the system is 4 hours. I think some people take this medication even before they get out of bed in the morning to help. Also if you are having more of a problem with your blood pressure after eating especially in the AM, (after checking with your doc first) consider your carb intake. After eating large meals or alot of carbs, it can cause in some people with this problem to get more giddy, brain fog, lowered blood pressure even more so due to the extra blood flow to the intestines. I usually do better after eating less carbs in the morning hours and then have what I want later on in the day. Good luck and hang in there.

[Shawila]

Danelle,

I can relate to your feeling of having a bad day, and the concern to be able to function on a Daily basis at work.

Almost two years ago, I became ill. I went on Short Term Disability and eventually that ran out. I had no other choice but to find something I could do that brought in some income.

I was working as an Ophthalmic Assitant for and Opthalmologist at the time. We did a lot of running around, moving, bending, lifting patients, etc... I was having problems with numbness, weakness, loss of muscle coordination, dizziness, Heart Palpitations and sharp increases in my BP. I just couldn't continue.

I was fortunate to have other skills and a Degree in the Computer Science field. I found a job working for the Town as Deputy Town Clerk, part-time (4 hours a day) and 5 days a week. I am also fortunate to have an Employer that really understands my condition, and what happens to me when I am ill.

There have been days that I have had to call in. Thankfully the job I have has a lot of exceptions and a understanding Boss.

It has given me some reassurance that I am still able to do something, one moment at a time even when I don't feel well.

Working in the Health Field is not easy work. A lot of hard work both physically and emotionally. I just couldn't do it anymore.

If you believe you need to apply for disability, go for it. To walk in your shoes, "Is to judge." Only the person themeselves can make that final decision and support is with you no matter what you decide.

I appreciate all of your support here. It is nice to know others feel and can relate to each other with such a baffeling condition.

As much as I hate haveing this, there has to be a positive in it. One thing I can tell you that has changed me, is knowing how important family, friends, and loved ones are in my life today.

With care,

Lori