TypewriterGirl

I don't want to write this as a success story because every time I write it I jinx myself and have a flare.

I was sick and undiagnosed with POTS for years. No one ever knew what to do about it and I thought I was crazy. Last September I had a flu vaccine and from then on went on an awful spiral where I was in the hospital at least once a week for IV fluids, unable to work or drive. I had to stay with my parents for a while since my husband was studying for the bar exam and couldn't take care of me. I couldn't drive, I couldn't walk to the mailbox, and it was awful. I gradually started taking small walks, then longer walks. I became militant about my medication, and I also tried to stop worrying as much, going on these boards. Thinking about having POTS all the time just made me more anxious.

In the past few months I've moved states. I've been able to go out to dinner with friends (no drinking). I can walk my dog. My life is so much slower than it used to be, but I'm so grateful for every day and every step. I hope I'll always feel at least this good, and I definitely still have bad days/weeks, but in comparison to how ill I was last year it's amazing. I hope all of you can find some relief in your symptoms.

Thank you! It's so crazy that a few months ago I was completely housebound and couldn't drive and now I'm looking to accept an amazing position. I know at some point I will have to have accommodations, but didn't want to ruin my chances while at the same time being honest with my employer. Thanks again for the help!

I'm not sure the best way to do this (or at all). I've moved states and just got a call today that I'm pretty assured I'll get a job I interviewed for. My last job I was out of the office for 4 months while sick and working from home. Though I've been doing so much better lately, I do have days where I'm out of commission, and I've been telecommuting and working from home so all is well. My question is, do you disclose having POTS and mentioning you may need to occasionally work from home as needed, or wait to get hired and then talk to them about accommodations? The job is 100% locked up yet, so I'm not sure of the best etiquette, or if it needs to be mentioned. Thanks!

Hello:)

I haven`t been here very much, but I read a lot of posts and get many good advices. I am a young woman (age 28), suffering with heart racing/pounding, dizzinesss/pressure in chest when standing up, muscle fatigue etc. Lots of POTS symptoms and anxiety basically. My heart is fine, its my nervous system that is wrecked:/

My biggest dream is to get pregnant and become a mother, but my health is a big issue for me now. It makes me sad, because I feel like the biggest thing in life is to become a mother, and it feels so unfair that this symptoms and my bad shape, prevents me from achieving it. I can`t think of stopping the betablockers I am taking, even if I feel pretty unwell on them. I have been on them for about 7 years. I am terrified how my body will respond to a pregnancy, but I don`t feel like I can`t wait until its too late to become a mother. I have a good relationship and he wants to become a father as well:) I know that I am very fertile, my period is very regularly. I read here that many of you, despite lots of symptoms, have delievered healthy babies. its good to know. Is it possible my symptoms will improve when pregnant? If I have to stay on a betablocker (atenolol), is that very risky for the baby, and is it absolutely necessary to wean it off when becoming pregnant? (sorry about my bad english- its not my language;)

Hugs, Villen:)

We definitely need to make a trying to get knocked up forum here. Or maybe just a club. With shirts.

You may be sensitive to the fabric.

I can't manage Jobst too long because I get itchy. They are alot less expensive so I only use these for housework.

I absolutely thrive with the JUZO brand. I use the 30-40mm level. I use a girdle/abdominal compression under my pantyhose when I need extra compression.

It was not recommended for me to use midodrine.

Do you use midodrine for heartrate or bp issues?

I am managing well with the compression, added electrolytes when needed and counter maneuvers. I also have a seat cane and a folding seat I can keep in a tote bag for when I am out and about and need to sit down swiftly.

Hi Tearose -

I'm using Midodrine for BP issues. I'm actually trying to get pregnant, but going off of Midodrine completely has started me down a Pothole. My doctor is writing me a prescription for compression hose - I'll have to see if the store near me carried that brand. Thanks!

I'm struggling to go off of Midodrine and my doctor wants me to try compression stockings. I get hot really easily and am a bit scaredy to go with the waist-high hose, so wanted to see what everyone else uses and if it helps.

I also have a small PFO that my cardiologist said is too small to fix and have said that it probably doesn't affect my POTS, but may be causing my migraines.

Does anyone have any experience with this? Did you get compression stocking to compensate for the lack of Midodrine? And can you keep up your salt intake? I'm worried about going off of Florinef and Midodrine, and contemplating staying on a small dose of Zoloft. I've also had one doctor advise to be off of medication for 3 months before trying, another said to only be off for a month. Any thoughts?

Here's a link to the episode:

http://www.hulu.com/watch/144904/house-the-choice

I ended up getting the Skechers and am loving them so far. Definitely took some getting used to, but I'm feeling my calves working.

I never thought I'd be able to wear high heels again - I was diagnosed with Meniere's and have lots of balance issues, but have actually been getting around pretty well and have been able to stand a lot longer than before.

Thanks for all the suggestions!

Has anyone else tried these, Shape Ups, or Easy Tones? I've found that wearing heels has helped, and was wondering if any of these shoes will have a similar effect.

Yes! I've definitely gone into the doctor, as they get very large and eventually bruise badly. Mosquitos are the worst. My doctor said he'd never seen a reaction like it.

Just got the results from my Arginine Vasopressin Hormone test - My test results came back as a .6 on a scale of 0.0-4.7. Doesn't this seem a bit on the low side? I can't find anything to see what "low" is. I just had a whole slew of labs done and I'm on the lower side of almost everything, but not low enough to warrant any response one way or another. Anyone else? Bueller?

Yep, I only take a half. Full dose was too much.

I've been on Midodrine for over a month now and besides the head tingling and goosebumps have no problems to report - was very scared to take it at first!

Dr. Ahern in San Diego is a great cardiologist who has a lot of POTS patients.

I see you have a list of sitting to standing BP's and HR's. What are your numbers when you going from lying down to standing, like a TTT? Your BP looks pretty 'normal' and your HR aren't too bad, but mine are very different going from sitting or lying to standing. Could you give us some of those numbers, so we're comparing apples to apples in the case of a TTT?

Sorry you're feeling so yucky. I know I felt so much sicker than my numbers showed for my first year or two. Hang in there!

Cheers,

Jana

During my TTT my laying HR was 75 and went over 200. My BP dropped from 120/84 to 50/32 and dropping. I haven't done a laying to standing test because I started Midodrine and I've just been testing my numbers an hour after I take it. I should definitely test it before I take it and after it wears off. Thanks for the suggestion!

LOL Whatever. To correct both heartrate and blood pressure and to say that you are cured is like to not open your mailbox and think that you have no more bills to pay.

This is such a deficiency to a dynamic process. My doc says that you can never ever heal or simulate a dynamic process and the best anyone can do is figure out how to bolster up a POTS patient, but its purely artificial and doesn't come close to being the actual pure ability.

The first step to becoming more functional is to get that heart rate and blood pressure to its optimum level, the next step is to build tolerance for activity, the next is tolerance for stressors (such as exercise) and the next is to minimize the crash cycle. This is how he explained it to me. So, you may be at the beginning of the journey, but once you can reach the point you are at- you are on your way to a much better life.

Kits

This was really helpful - thank you. I felt like I was taking crazy pills.

From the past few days:

Feb 15, 2010, 8:05 PM, 113/84 mmHg, 122 bpm, stress level: 2, notes:

Standing

Feb 15, 2010, 8:02 PM, 112/69 mmHg, 84 bpm, stress level: 2, notes:

Sitting

Feb 15, 2010, 3:03 PM, 140/89 mmHg, 89 bpm, stress level: 1, notes:

Standing, 2nd midodrine

Feb 15, 2010, 3:01 PM, 120/81 mmHg, 75 bpm, stress level: 1, notes:

Sitting

Feb 15, 2010, 10:13 AM, 111/79 mmHg, 107 bpm, stress level: 1, notes:

Standing

Feb 15, 2010, 10:12 AM, 115/80 mmHg, 82 bpm, stress level: 1, notes:

Sitting midodrine

Feb 14, 2010, 10:13 AM, 118/85 mmHg, 102 bpm, stress level: 1, notes:

Standing

Feb 14, 2010, 10:11 AM, 128/86 mmHg, 87 bpm, stress level: 1, notes:

Sitting, midodrine

Feb 13, 2010, 4:01 PM, 128/80 mmHg, 83 bpm, stress level: 1, notes:

Standing, 2nd midodrine

Feb 13, 2010, 4:00 PM, 112/80 mmHg, 73 bpm, stress level: 1, notes:

Sitting

Feb 13, 2010, 10:11 AM, 118/78 mmHg, 130 bpm, stress level: 1, notes:

Standing, HR 133

Feb 13, 2010, 10:10 AM, 120/74 mmHg, 104 bpm, stress level: 1, notes:

Sitting, midodrine

I've been logging my BP and HR for the past month to send my doctor since he's been playing with my meds. Today I asked him what the next step was and he replied, " Your blood pressure and heart rate are all better?". I'm no longer getting error messages when I take my standing blood pressure but still tired within an hour of being out of the house, haven't been able to go into work in a month and a half, and am still always thirsty. Is this just my new normal?

I've been on it for nearly two weeks and it isn't helping.

I was put on midodrine and it was starting to work but it made my RND flare as I already have issues with my constricted blood vessels (with RND the nerves attack the vessels)

Doc just called (she's wonderful) and asked if I was willing to give it a full month, as it sometimes takes that long. Naturally I said yes.

I don't know what else is out there for me if this doesn't help, thoughts?

Not sure about Beta Blockers, Setraline is as serotonin reuptake inhibitors [sSRIs] to make my brain raise BP and lower HR.

There's definitely other SSRI's out there that you should try - they all work differently on different people. I'm on my 3rd week of Setraline and it's just now lowering my heart rate. Sometimes they take a while to work, and it beats the heck out of having a bad reaction. I'd vote to stick it out and if after a month if doesn't work to try a different SSRI.

I have an appointment in the morning to remove Mirena and go back on the pill for various reasons.

I had to have a Lupus Anticoagulant blood test first (you can't be on BCP with it, only Depo or IUD). Well, my results finally came in and my PCP faxed them to my Rheum today. So I've two messages into my Rheum, I explained my urgent situation, and it's 6:30pm so it's not looking like I'll get a call back. I even talked to the office person who knows my situation.

I've left another message saying I just have to know if it's positive or negative. If I get the IUD removed and it's positive, insurance will not cover another IUD, I won't be able to be on the pill, it will be a mess. I'm really no good without some hormone regulation with POTS.

What can I do? I don't think I can reschedule last minute with the Gyno office, this has been booked for weeks. Advice, please?

What time is your gyno appt? Do you have time to show up at your rheumatologist's office tomorrow beforehand to try to get the results? Otherwise I'd try to reschedule with gyno if possible. Good luck!

Thanks for the thoughts. I sincerely hope it isn't the menopause as I'm only 30 yrs old (family average age at menopause is 57). I was on a combined contraceptive when it was very high last summer, but I have been on it for years, was still taking it in the autumn when my BP went low again and am now off thr pill but having highs again.

No sense or pattern as far as I can see!

Flop

Persephone - I'm still in hospital but can text and sometimes phone, also on MSN via my hotmail address.

(For those that are wondering I have broken my wrist and had it pinned under GA on Friday, now having lots of syncope so not allowed home yet).

Flop - Thanks for the response - Hope you're feeling better! I'm 26, 5'6 and 130 pounds so I'm pretty sure my BP rising is somehow due to the Midodrine since nothing else has changed in my medication regime except starting back on it. Just weird for my BP to rise when I'm so used to it falling when I'm standing.

Hope you break out of the hospital soon!

Hi Flop,

I know this is an old topic, but were you ever able to have this resolved or find out the reason for it?

I'm only taking 5 mg twice a day - once at 8:30 a.m. and once at 1:30 p.m.

Today I tested my blood pressure and it was 123/79 sitting and 129/90 standing. I contacted my doctor to see if this is something I need to watch, since Florinef also raises my blood pressure (I take .05 daily).

Thanks for all of your words of wisdom - hopefully I'll get this figured out.