Kitsakatsa

Wow. Holy Cow! That sounds like a rollercoaster! The only thing that I know is that the GI is regulated in part by the Vagus nerve and the whole thing ties into the hypothalamus. What a puzzle. I hope you are feeling better soon. I've never heard of pots attacking the GI tract, but it is possible (of course, if they said it) because it is all about auto regulation. I don't have much to help you with. I was thinking that maybe your stomach was upset from pain meds, but it sounds like there are some hormones off kilter. Maybe your body will adjust? I hope that the past episode will be isolated and not occur every month. Otherwise, have you thought about medical menopause? I take Aviane so that the endometriosis and the whole thing will stay away. I'm sure you might be considering something in light of your experience.

So sorry this is happening to you.

Kits

I am on day 16 of a very bad illness. It moved from sore throat to bronchitis and now lung infection. I've been through 4 rounds of antibiotics, all overlapping. My doctor said that while most people would shed the bug in the bronchitis stage, a pots patient would not be able to shake it and it would make them very, very sick. He gave me the next rounds of antibx and stuff to knock me out for a week.

My question. Has anyone had this and how long did it take to get better? I have to go back to work Monday, or I'll lose 25% of my income. I've missed 2 weeks of work...

I feel really, really bad. Almost like day 1 of pots. I'm trying not to panic. Sometimes I start shaking and then the tears roll. I'm just so worried that I will feel this lousy forever.

Has anyone been through this? I'm having a hard time with thermoregulation and I don't know how many days of sweating shivering I can handle. I hope that someone has some insight for me.

Injection from the doctor. It started at 1/wk for 6 weeks, now just once a month. I think it helps alot.

Kits

I would search around for an eye doctor with a sub-specialty in neurology. Some major medical schools have this emphasis. I just out of the luck of the draw landed a doctor with this sub-specialty. Before, I didn't even know that it existed. When I go in, he does extra tests that are designed for those with dysautonomia. Also, he knows what to look for. The funniest part is that he treats me like I am a supreme princess sent from some UFO somewhere. He spends double time with me, I get my own area when the drops are in and he watches me walk around (like this is the Miss Pots pagent?) like I am some amazing thing *, or at least so he can see how I can balance. Anyway, I think it is a great benefit than to just have some yahoo who doesn't know what to look for. We can use all the help we can get!

*I mean, I know I'm hot, but come on....!

Can you move in with your family? I would ask my daughter what she is feeling. Maybe her feelings are yours but 10 fold. You have some benefit to staying, but some drawbacks. I would base everything on your daughter and how she is feeling. She is not only dealing with that drama, but worrying about you being sick. She is 11. She can do chores. Maybe she would rather do those than deal with the drama. If you are wanting to run away, what is the effect on her. I think its time for a heart to heart while he is away. If you are strong enough to emotionally deal with pots- you are strong enough to make some tough decisions.

Best of prayers,

Kits

I think there must be alot that they cannot explain to us- things that are part of our reality. One thing that sounds a little like your walking thing (exertion) is that when I start a sentence outloud or start singing, everything grows dim and the world moves to the left in my vision. I've never brought it up to the doc. I mentioned it to my mom a while ago and she thought I should mention it. I don't know though. I don't think anyone could do anything about it. I thought it was just my own wierd little thing until I read your post.

I can't say that I've had a nap in the last 4 years, but I once took a picture of my legs when I was painting the house in shorts. I had been standing for about 10 minutes- well beyond what I should have been doing and looked down to find not just purple, but black legs. It didn't resemble a burn so much as crime victim. The picture turned out just wild. I don't ever see this because I have a suit on most days. I was totally shocked. I guess I just go and do and always feel crummy and I forget about the real physiological process behind this illness. It would have been a really good show-and-tell, but unfortunately I was alone at the time. I guess compression hose are supposed to help, but that's if you can put up with them!

I had it long before pots. From what I understand, it is always underlying and can come back with stress, or stress to the region. I got it from working in a burn unit. I had horrible pain and my physiatrist wrote for iontophoresis. Basically, there is some sort of anti-inflam med in a disc. The disc goes on your chest and the lead over it. I had about 7 leads. It looks alot like an EKG test. Then, they turn this thing on and it sends vibration waves? into your chest with the medicine. This isn't alternative medicine, it sounds wierd- but its a routine thing they use for a variety of conditions. Anyway, it helped me alot and the whole thing was over within 3 months. I have to say though, while I was fighting that- I was pale and felt horrible. I amazed that you are faced with pots and that at the same time. yowza!

Kits

Right, Cat, you do get by. I think that is the most important thing to remember. Its a big struggle, but somehow it all works out and 5 pm rolls around!

I was trying the generic form (methylphenidate) and it worked okay, just like Mestinon works okay. I didn't have the 2 together though. Dr. Low replaced the Methyl with the Mestinon. The side effect that was hard to tolerate was irritability. I felt like I just wanted to go off- POTS didn't seem to get better or worse after it.

I had MAC (awake anesthesia) to get my port-a-cath in. Piece of cake. For General, I agree that you should visit with your Anesthesiologist before the surgery. Also, I would ask your surgeon who the best one to handle this is and request that Anesthesiologist. I work in an OR and people with special conditions do it all the time. Surgeons love it because they get the best outcomes for their patients and get to work with their favorite Anesthesiologist for the day. You would request the Anes through the OR front office directly.

I could only work 3 hours per day at first. I could only be upright for that long. Then after a month, my boss requested that I slowly build up to more I really didn't feel like I could and it was a BIG constant struggle. Very slowly I returned to a normal schedule. What I do agree with is that I believe that building up slowly has helped me recover. I think forcing myself has helped my system to do more. I mentally had to do that- I was going crazy laying in bed. What I don't agree with is that Pots patients for the most part can be expected to function in a job for 8+ hours a day, 5 days a week. I work 40+ hours a week now and I feel that although I can do it, it is not healthy for me and I have constant setbacks because of it. At least in my experience, a healthy schedule (if you can do it) would be 20-30 hours per week and that includes school work. There are some places where that type of schedule yields health insurance and that is ideal. I feel my limit at 5-6 hours per day- then I start to get fuzzy and want to online shop for clothes.

So, to quit rambling- my experience has been that it is important to push against your boundaries, but not to the point of setbacks. You may find that you can work longer hours at a seated job than you could at a standing, moving job.

As for school- online classes are fabulous! I would not count school out all together. There are lots of options. I completed my MBA online while having Pots. It is all about timing and what is right for you. I can't say these things are in anyone's control- but there might be some solutions that will work for you.

Kits

Do you live in Utah? (Jet Blue home reservations)

If I were you, I would try medical transcription again. Although, if you can't tolerate 4 hours a day- I think that disability is your best shot. You could go to school (online) and possibly live off of the low cost student med insurance and free student clinics. Financial aid and grants would pay your rent and groceries. If you live close to a school, they sometimes offer student jobs for supplemental income.

Have you thought about doing research online (pubmed, etc) for legal firms? Sometimes they need someone to pull up relevant literature and research on medical conditions. I don't know of any companies, but a lawyer once mentioned to me that he was always trying to get his assistants to do it, but they didn't know how to wade through the content. If you have some medical background- you could probably start with a $30 business license, a pub-med license (free at colleges and Universities, even some hospital education rooms), and a pack of business cards. We should probably all start up this business together!!!!

If I think of anything else, I'll post.

Just be sure that when you get refills, you don't get "Epidrin". I even asked Target pharmacy why Midodrine turned into Epidrin and they said it was a generic form. Yeah, if you are taking "Midrin", which is much different than "Midodrine". We traced it back to the MD office 3 months ago- the girl didn't know how to spell the drug, so she just picked a word that sounded similar. Neat. I was on the wrong drug for 3 months. Keep an eye out!

Your body has 2 types of bladder sphincters (tightened tubual exits). One is the internal one, and one is the external one. The internal one opens and that tells you that you need to starting thinking about the bathroom some time in the near future. The external one is the final release valve that is the point of no return. For people with nervous system damage, the internal sphincter is often too loose and without any muscle tone. This is because it is controlled by factors of the Vagus nerve. So, those of us with POTS find ourselves with 0.01 seconds to find a bathroom and get there. There simply is not a good notification system. This is similar to new moms etc. Also, we tend to drink water in spurts (lots of water....no water...lots of water) depending on signals that we are receiving from our blood pressure and autonomic system. So, it follows the logic that when sleeping- you will have little to no control. Add to this the meds that many of us are taking and some of the sedative properties of those meds. It is beyond our control- literally.

I have determined that the hottest chics in the world wear depends (me, included!). "Hey baby, take me anywhere...Disneyland...Airport...I am completely contained!!!"

Are you on Clonidine or anything like it? I had these when my dose was boosted. I can't remember the name for it, but it is a sleep phenomenon thing. My extremeties were vibrating and there was a low humming sound in my head. I also had hallucinations and during these few minutes there was a distinct taste in my mouth. During one incident, I could feel things hitting me. There is an actual medical word for all this. It was pretty frightening at the time- If this is the same thing, I don't blame you for being alarmed (I thought I was having a heart block or something). According to my doc, it is a harmless side effect with Clonidine although bothersome enough that many people will stop taking it.

Anyway, its probably good to talk to a provider about it- but I wonder if its your medication. Did you recently start, stop or increase anything?

Kits

Florinef is not a picnic, but the side effects, for me, is not as severe as POTS is. I am on a full metal dose (0.4/day) and without it I am in bed.

I'm pretty much willing to put up with anything if the nausea will just go away (even to a small extent).

The memory of the anniversary can indeed be haunting. I have a bunch of landmarks and the day of onset and a few other memoral days have the tone of being jipped. Then the anniversaries come around of my "Angel day" when a physician took me under his wing after I had been competely bed bound and malnourished for 3 months. I'm at the 4 year mark and so I'm now trying to make new anniversaries. Like, I am at the 4year mark, but I am also at the 4 month mark of being abe to push myself into exercise. It's ALL part of healing, mourning the past that I might have had and making plans for the future. I have lots of dark days, but even more small little miracle blessings. When you reconcile the two, you grow.

I could only eat Carbs really until I started to eat Jenny Craig food. It has been the first time in 4 years that I can eat a balanced diet. I feel better now and since I am just me- it helps me to save my energy for building muscle instead of cooking. I've had severe muscle wasting and was in a cardiac rehab program for a while. Because of the G'paresis, food has been a real issue for me. I guess the Jenny Craig food is really low in fat and higher starchy. Plus, its balanced, so I don't have to force down the veggies which has also been a big issue.

It just came to me and was like total heavenly inspiration that the pre-pack meals would help me get better. So far, its a dream come true. I guess you can't ask for better. The goal is to find your individual helpers.

Kits.

Wow! This is sooo individual. I never would have thought. I credit coffee for saving my job. I need it after lunch for the BP drop and the cog clouding. It turns my day around and without it, I would have to go home.

It does increase the nausea, but I have to pick and choose which I need to tolerate and just get through. Coffee helps me keep my daily POTS drama a secret from my co-workers and corporate counterparts!

Provigil 1.5 hours before your alarm (most clocks now have 2 alarms) For me, it just pops me awake naturally.

and

I haven't tried this, but Verilux (maker of SAD lamps) makes a gentle daylight alarmclock lamp. It looks great. It wouldn't work so much in the summer, but it would be interesting. Another cheaper idea would just be lamps on timers.

Can you set your alarm clock to play music instead of the harsh tones?

The reality is- it adds harder to the hard. I am someone who is overweight anyway and then you add all this on to it. I'm trying to lose weight to find a mate and have children before its too late. I don't think I have to go into the rigors of exercise and a high sodium diet with you guys. It is mission impossible.

Unfortnately, it took the illness for me to realize that endless school and endless fast food did not lead me where I wanted to be.

I am finding it hard to believe that a spouse can be found under such conditions. I just can't compete and most times I've lost my interest anyway. Don't get me wrong- I'm not a hag or anything but compared with the kinds of girls that can rock-climb and wear just about anything in this state- I wouldn't even call me!

That said, at least if love can be found while one is ill- you can be assured that it would be a far more profound love than ever was born under perfect circumstances on a perfect day. Love on a perfect day is easy, but true love in the middle of IV poles and no makeup is the kind of love that would last forever.

So, that is what keeps me going to the exercise classes, online clothing shopping and tan-a-colada!

Not in my experience. Better is from Medical Supply that requires an RX. Best is custom made from a company like Praxair.

There's finally a line for low blood pressure. (Maybe it was there all along). It's pretty good, although doesn't mention POTS.

Here's the link: http://www.mayoclinic.com/health/low-blood...0590/DSECTION=1

Here's the link if you would like to subscribe (free online newsletter) to Housecall: http://www.mayoclinic.com/health/housecall/HouseCall

Kits

I agree with the cats part. My two cats Search and Destroy keep me going and always seem to know when I need a cat (or two) on my lap.

My best recent discovery is "Cuddle Duds" ClimateSmart long johns. The ClimateSmart kind are made of very thin, silky fabric and wick moisture away so that you stay comfortable, warm and not too hot all day long. I exercise in them and they are PERFECT to wear as unders underneath the medical stockings because they keep your legs and bottom from chafing. I would literally have big welts, now completely gone and I can wear my stockings everyday.

They have several varieties, softies, etc. I've not tried those kind because I'm so in love with these that I cannot not order them. I have had them for 1 weekend and it has been by far the most comfortable weekend ever.

They are available @ JCPenney and Amazon, but if you order from essential apparel on Amazon- don't expect them to reach for 3 weeks or so- big problem in my book!