summer

Just wondering, for those of you who are able to work because of accomodations on the job, what has helped most? Could you tell me what accomodations have been put in place for you? What documentation was required to request these? Thanks. Summer

I agree... no worries. Nineteen hours should be plenty of time to clear your system of the caffeine in a cup of tea. Good luck at your appointment, Michelle! Summer

Mary, I'm sorry that you also had a recent bad experience. I have sent you a PM, so could you check for it in your new messages? Summer

Hi Michelle, I'd be concerned about your BP being that high. Especially the diastolic (the lower number) being above 100. If it goes that high again, maybe you should lie down and recheck it to see that it goes down. Be sure to mention to your doctor that it is going that high. If it goes up and stays up (does not come down with rest), you should have it checked right away at ER. Summer

Hi lolo, I think I would be just the same if I were on my way back to work... Literally, "worried sick"! I'm wondering what it means to be "formally" disabled? Would it take more than a letter from your doctor for that to be the case? I'm also wondering if your doctor is aware that you have limitations, so much so that he will not sign a release stating the contrary, than why does he not state in writing what your limitations are for your employer so that you can request appropriate accomodations? I understand what you mean when you say you don't have the energy for a fight, but it sounds like with this principal, you may be in for a fight one way or another. She doesn't sound like she wants to make it easy for you. I'm preety sure I will soon be up against some of the same challenges you're facing when it's time for me to go back to work. I figure I might as well fight this fight now because I'm not sure I'm going to get much better than this, and I'd love to have a work situation that will work for me. I truely wish you the best of luck in your start to the school year. I really hope things will begin to fall into place for you. Summer

I'm sure I have read that some people with severe orthostatic hypotension wear pressure garments to help them function including abdomenal binders to decrease pooling in the abdomen. Your countermaneuver makes sense, I'm sure it works! Neat discovery!

Good to hear about your wonderful doctor. I have one too who has perservered with me against the opinions of serveral "specialists". What would we do without the good ones??!! How was the drive home? Summer

Maxine, What a horrible way to treat a patient. I'm sooo glad you stood up to him. It amazes me that he would so arrogantly contradict what 5 (or more) other doctors have told you, and then send you off to have a proceedure that could be dangerous for you. I hope this can be taken care of somehow before your son's wedding. I'm sure it's taking some of the fun and excitement out of this special occassion with all this hanging over your head. I'm praying for you, and hoping that doctor will not stand in the way of your getting relief from your pain. Summer

Use of nitro would not be appropriate in this situation, and could be dangerous. Nitro relieves angina by dilating coronary arteries, but in doing so it will dilate all blood vessels and drop BP. Certainly not a drug for most people with POTS. Lolo, sounds like your situation is unique to most of us, and your doctor is treating you for your specific condition and symptoms. I would caution others with POTS that Nitro could be dangerous.

Hi lolo, Probably for most of us with POTS, nitro patches would not be appropriate and would cause severe hypotension. But sounds from your post on another thread that your doctor has good reason to think it is appropriate for you. Sounds like you have found it helpful and that it has not caused you any problems. I have applied many nitro patches for patients over the years as a nurse and our rule was always to apply the patch as long as the BP was greater than 100mmHg systolic. Glad you have found something that helps your chest pain. Summer

Jump, I can really relate to this too. In fact, I've knowingly overdone it at times because I don't want to miss all the fun stuff! I do pay for it, and sometimes I regret it. But at other times, I'm glad I didn't miss out on the memories. I try not to do it too often. Hope you're feeling better. Summer

This is not anxiety, it's just good common sense. If you had some other type of health issue like epilepsy or severe allergies you would take precautions to look after yourself. Knowing our limitations, and avoiding situations that provoke symptoms are the best way to continue to participate in activities with our family and friends. This is certainly not anxiety... it's coping, and I'm surprised that your therapist does not appreciate that.

Good work! I'm working on a similar goal in PT but I'm a long way from it. Your post encourages me to keep at it!

Just wondering if others here are prone to anemia. I have had this tendency since childhood inspite of adequate diet (well...I could do better). Just wondering if there is any connection to POTS or dysautonomia that anyone is aware of. Summer

I'm glad to hear you will have something to fall back on if you really need it, but I can understand your anger. This sounds very unjust. Sounds like you are not the first and you won't be the last to be discriminated against at this hospital. I agree that talking with a lawyer at this point would be a good idea. Your employer should not be allowed to get away with treating people this way. Summer

Hi Mary, I agree. Beta blockers have helped a lot with the tremor but probably not much with the weakness or fatigue. Infact, initially the fatigue was worse, but over a couple of weeks returned to the usual level of fatigue (which is pretty bad). Summer

Sorry to hear things are so stressful right now. I'm a nurse and although I'm off work right now, I do anticipate a challenge if I make requests for accomodation when I am ready to return (probably to a different type of position). I work in Canada and I'm not sure what "per diem" means. It's a term we don't use here. Is this some type of part-time or on-call type of work? Also I'm wondering if you belong to a union. I'm sure I'll be counting on my union to back me up and to see that my rights are protected when I return. If you belong to a union I would contact your union rep first. They will know what you are entitled to under your contract and may have lawyers there who can help if needed. Summer

Sorry to hear this, Pat. You'll be in my thoughts and prayers too. Take care. Summer

That is such good news! Congratulations. I'm sure that will be a huge stress relief, and we can all use that! You must be so glad to have that behind you. All the best, Summer

Tearose - Obviously, you have been where I am. That is so much the way I feel - like eventually, I'll get back to my old self, like I'm too young to be ending my career... but maybe I'm only ending this phase of it. I appreciate your encouragement to look at other possibilities in nursing. Certainly, it is a profession of options. I always said I'd never want a desk job - but that's actually starting to sound pretty good! You're right, maybe I need to start considering some changes and figuring out what is right for me. Thanks so much. Summer

Sara - Glad I'm not the only one here with a fast heart rate. My resting rate rarely goes below 80, and it's not uncommon for it to be 100. That's usually when I'm most symptomatic with POTS - if my resting rate is around 100, then it will probably be 140-150 as soon as I stand up. If my rate is slower (like 80) my heart rate jump is not as much when I stand (might only go up 25-30 beats or so). Actually, I'm sure I read somewhere that most people with POTS have fast resting heart rates, but maybe that's not the case - doesn't seem to be here. Summer

I agree, Melissa. When I restarted a BB after having adjusted to Florinef, I had increased fatigue as well. I titrated slowly up to my dose. After a couple of weeks, I felt better on it than off it, and I know now that it's an important part of my treatment. I am taking Nadolol.

quote name='Tammy' date='Jul 22 2008, 11:12 PM' post='97305'] You might want to give your body a "test" at working. Spend a few days in a row doing activities that you'd be required of at work, taking only the breaks you'd be allowed to at work... you can't just sit down and rest at work when your body says it needs to, so if you can go a week with working in the house, shopping, lifting things, etc. without resting and continue to feel well, then going back to work might be a possibility for you. Tammy - I know you are absolutely right, but the thought of trying that, even here at home, is totally overwelming! I guess that kind of indicates I am not ready. Also, although I could replicate the physical demands of my job at home, I could not include the stress of dealing with emergency situations, cranky doctors, etc. that are part of my work everyday. After improving so much, I can't stand the thought of relapsing back to that place of illness. Melissa - I'm glad that you mentioned pain, because I hadn't been thinking about that. I also have a lot of pain (back, neck, shoulders, headache) with prolonged standing. I just haven't had to stand that long recently. Pat - Glad to hear you were able to improve you work situation to support your health. Working nights is very tough even for those without health issues. Joe - I can so relate to the difficulty with multitasking and recurrent brainfog. Also, I can feel "good" (the new "good") in the morning, and rotten by 10. Days can vary so much. It's hard to know what I'm able to do on a consistant basis. Tough decisions! Sara - Sounds like you've worked hard to make a job situation that works for you and allows you to study as well. Great job sorting it all out!

Hi Richard, I also believe I have hyperadrenergic POTS. Before eventually seeing an ANS specialist, my GP started me on metoprolol because of my tachycardia. I was unaware at the time that my BP was also dropping when I stood. The beta blocker did drop it more, and I was unable to continue it. Then he tried clonidine. It also dropped my BP. Since being properly diagnosed, I was started on a combination of Florinef and a beta blocker. That was the key (along with lots of fluid and salt). I could not take the BB without the Florinef to keep my BP up. The combination has really helped. Summer

Yes, I'm sure that your job is also physically and cognitively demanding. Sounds like you've decided to give it a try. Hope it goes well for you. All the best!