janiedelite

For those of you who had questions about how to get a wheelchair, it's best to call your health insurance and ask how they would cover it under your durable medical equipment policy. I pay 20% of my medical equipment, but my health insurance rep said that they only cover wheelchairs if your doc says you need them 100% of the time. Sounds like other people have more lenient coverage.

I just got one off craigslist for $35. It's a little squeaky and pretty heavy but it allows me to go on longer shopping trips where they don't have the electric carts available.

And I'm like Mkoven, I can go for a walk where I'm constantly moving and do pretty well. But a shopping trip or anything where I'm stopping and standing makes me feel awful so I use a wheelchair or electric cart for those trips.

I've been in total face/neck/chest flush mode at my POTS docs office and he'll just give me a smile and say, "Wow, the adrenaline's flowing today". For what reason, who knows. Temp change, standing too long, too many carbs, etc., etc. Trying to figure out exacly the cause (when even my docs couldn't) used to drive me mad. Now I just try to deal with it the best I can (and it's gotten much better over time).

I think mine is related to adrenaline. With my flushing (my cheeks get bright red but my whole head, neck and chest are pink), my hands and feet get cold and pale and sweaty. I know my norepinephrine levels are high with orthostatic stress, and it seems the more my sympathetic nervous system kicks in the more I flush.

Hi Erika,

Wow! You've been through a lot. I'm glad you got a POTS diagnosis. Beta blockers do slow your heartrate, but your heartrate isn't usually the reason for the fatigue you feel as the day goes on. The tachycardia is a compensatory response to try to get blood up to your brain. Your purple feet are a sign of venous pooling, so maybe you need to work on treating the venous pooling/hypovolemia? Have you tried compression hose? Most people on this website wear them and I have to wear them as soon as I'm out of bed. Also, be sure to stay hydrated. Some of us have a high sodium diet to help retain fluids. It might be a good idea to invest in a home BP cuff or heartrate monitor.

I've also developed worsening reflux, abdominal pain and constipation since getting POTS. My small intestines don't push food through normally anymore.

I understand about the breathing issues too. I've explained it as a dull ache over my chest that can become sharp in the heart area, but it also feels like I'm breathing against resistance (like breathing through a straw).

I have a local neurologist who specializes in treating small fiber neuropathy (the cause of my POTS), but there are no neurologists in the Pacific northwest who know about dysautonomias. So I had to go to Mayo where I had a thorough workup. He prescribed lots of fluids (3+ liters a day), high sodium diet (4+gms a day), exercise when able, avoid stress, waist-high compression hose, and some meds. It's just kind of trial-and-error to find the right balance for each of us.

You mentioned having constant pain. YES! My skin burns as a result of the neuropathy, but my arms and legs ache from the blood pooling. My head/neck/upper back hurt when I'm up for very long as a result of lack of bloodflow. That's called "coathanger pain."

There's no way I can work right now, either. I'm an RN and used to work 12-hour shifts, up to 20 hours at a time when I was on-call. Being upright, stress, even talking worsens my symptoms. But by being careful to not overdo things, stay hydrated, rest/exercise (I walk 1/2 a mile twice a day), etc. has allowed me to keep my symptom flare-ups to a few hours or days. I'd be in bed for weeks before I knew what to do.

I'm sorry you've been saddled with this disease, but keep trying different treatments. Last year, I thought life as I knew it was over because I could hardly get out of bed from the fatigue, nausea and pain. Now, I'm learning how to adapt to a new "normal" and can do things like cook, houseclean, and even some driving.

Take care, Janie

Thanks for posting this, Jennifer! It was interesting how they correlated lack of sleep with increased sympathetic activity. It just validates how we feel on days when we get less sleep!

Thanks again, Janie

Yeah, my sleep doc said I could take benadryl if I wanted, and even pain meds if I need to.

Florinef makes you retain salt, which attracts water. That's how it boosts your blood volume. Florinef made my BP too high, so I'm supplementing on my own with salt and fluids instead.

I had intermittent cloudy urine while I was on florinef. I don't know if it was the florinef or not. My doc did a urinalysis which showed no infection or other problems. Never figured it out!

My BP went too high and I've been off florinef for a couple months. No more cloudy urine.

Like Tearose, I was diagnosed with POTS by my local EP cardio. But he didn't know what to do with me and stopped returning my calls. So I went to the Mayo Clinic in Rochester where I had a full workup and they found that the cause of my POTS was small fiber neuropathy.

Rene, I'm so sorry you're having such a hard time! Can you do a gastric/small bowel/colon motility study? That's how they diagnosed my slow small bowel. Many people with POTS have slow stomachs as well. I can usually push through the nausea and fullness, though, and I've managed to maintain my weight. I also have high-grade reflux. (sleeping with the head of my mattress elevated helps for nighttime). But most meals I have to eat either reclined or laying down. It just seems like it's too much work for my body to be upright and digest food at the same time. And I know it's the worst thing for GERD, but laying down for a bit after the meal helps me to digest, too.

Also, since my delayed emptying is related to sympathetic over-activation (from orthostatic stress) I find that it is better if I stay hydrated, wear compression diligently, rest, salt, etc.

Can you take in liquids? When I'm having hard days, I try to drink Carnation instant breakfast because it has calories, vitamins, and is easier to digest. If you're lactose intolerant, I think there are liquid supplements that are soy-based also?

You poor thing. Sounds like your dysautonomia is really out of control, hence the bad shakes too!

Please let us know how you're doing, Janie

Hi guys, sorry I haven't replied to all of your great posts. My hubby and I celebrated our anniversary yesterday! Funny story, though. We went to a movie and I was at the counter, shaking salt onto my popcorn (who else besides POTS people salts movie popcorn?). Well, this tremor makes me drop things sometimes if I don't grip them very firmly. So I'm shaking the salt shaker and it goes flying and I try to grab it and my arm flails toward my drink. My hubby instictively grabs the drink to keep it from flying too, but accidentally squashes it with his hand and sloshes it down my jacket, pants, shoes, and socks! It was blackberry cream italian soda ! I was so sticky, but we still had a fun movie!

Maxine, thanks for the definition of familial tremors. Very interesting!

Sounds like beta blockers work for many of you! My neurologist had suggested that if I find the tremors too annoying we could try BB's.

AJW, I can relate to the orthostatic tremor you described. The adrenaline-induced tremors seem most common with POTS. But I'm thankful for those of you who replied who have tremors at rest also. Very interesting!

I have lots of muscle fasciculations (twitches) during POTS flares while I'm at rest, but I don't think those are the same internal tremors you folks were referring to.

Firewatcher, it was really interesting that your tremors were your first symptom of dysautonomia. I'm glad you were able to find a treatment. It seems that my tremor (while I'm at rest) is the familial tremor Maxine described, but it seems to be worsening along with the POTS so I do wonder if there's a connection. As with most of my crazy symptoms, only time will tell!

Thanks so much, guys! Janie

Wow Suzy, I'm SO happy for you!!!!!! Finally, some answers AND a doc that's on your side! Yay! Janie

Hi Michele, I'm glad you figured out that dysautonomia flares cause your tremors! I do have worse tremors when I'm under orthostatic stress, or any stress for that matter. But my main concern is the tremor that I have all the time, even while I'm resting or when I first wake up in the morning. I just wonder if it's associated somehow with the small fiber neuropathy that's gotten worse along with the tremor.

I don't take anything for the tremor because it's not really associated with any stress as it's always present even when I'm relaxed. And it doesn't impair my function much at this time.

Thanks, Janie

Abbriggs, I don't know about an internal tremor, but my mom and I have these wierd shaking episodes that accompany our very rare migraines. We start shaking uncontrollably from the legs up. Nausea and vomitting also accompanies these migraines. Other than that, my tremor seems to just affect my hands.

Thanks, and I hope you get some anwers! Janie

Hi Casper, I'm so sorry for your sleep difficulties! So many of us can relate. I'm glad you don't have apnea. For me, when my POTS is being controlled I notice that I sleep much better. Far fewer awakenings and a more restful sleep. Frustrating because most people when they're sick tend to sleep more. With POTS, we sleep less. It's kind of a double-edged sword. I hope you can find some relief and rest!

I've so recently been diagnosed and I'm still trying to put all the pieces together! But when I was at Mayo the neurologist noticed I have a fine tremor in my hands. My mom (who's 60) also has this, as well as her mother, and her mother, etc.... My mom and I both have this small fiber neuropathy also, although we don't know of neurological problems in any of the other family members. My mom also has a rare neuroendocrine cancer called carcinoid syndrome. My mom's tremor is slight, my grandma's prevents her from writing, but I guess her mother's affected her entire arms. No Parkinson's from what I hear.

The Mayo doc says my POTS probably came on post-viral (I had mono in 6/06 and first went to the ER with high HR 10/06). But the more I think about this, I'm really questioning if there is a strong genetic component to my small fiber neuropathy (my POTS is secondary to the neuropathy, according to the Mayo doc). The tremors in the ladies of my family usually don't set in til they're in their 50's, but I'm 35 and I noticed in my 20's that my handwriting was very wobbly and I was having to buy fat pens in order to keep control over my writing. My mom's neuropathy didn't set in til her 50's, but she got carcinoid in her 30's. My neuropathy set in during the last couple years. But I had POTS symptoms prior to the burning/itching/numbness from the neuropathy. Maybe the neuropathy was present in 2006 but the pain just hadn't set in yet???

Also, from what I've read post-viral POTS doesn't have a progressive course, and many people get better. My POTS and neuropathy symptoms have slowly worsened over the last few years, though. The last couple months I feel like I've stabilized but I've been very diligent about fluids, salt, compression, stress, etc. My mom's burning skin hasn't really gotten worse with time, though. Maybe now that this has set in it will kind of stabilize?

Just an FYI, my tremors do get worse with orthostatic stress, and I did have elevated norepinephrine levels on standing which can cause tremors. But they are also there when I'm reclining on the couch. I often knock things over, drop things, I can't fill cups very full or I'll shake the liquid out.

P.S. My brother had a neurofibroma removed when he was about 30, so my family just seems to develop crazy neurological conditions around this age! I feel like I've been posting a lot lately, but I either bug you guys about it during the day (and you are all so knowledgeable) or I wait til hubby gets home at night and he goes cross-eyed on me!

Thanks

I'm so thankful I don't have the muscle weakness many of you have talked about. But does anyone have this kind of constant tremor? Small fiber neuropathy?

Lois, thanks for sharing your experience with the Bipap vs CPAP. I'm not looking forward to having to use any device because of my neuropathy constantly causing the skin on my face and scalp to burn. It also burns in my mouth, especially with increased airflow. But I used to work post-anesthesia as a nurse and understand the risks of having a constantly obstructed airway. I'll just do what I've got to do!

Firewatcher, that totally makes sense to try to make myself as symptomatic as possible. Even though I dread how it will make me feel! If I can follow his advice to sleep less, and he sees how really screwed up it makes me, it might help to establish a diagnosis. Ugh! I'm already having more problems with nausea since getting up at 8 yesterday, and today I'm up at 7. It's our anniversary this weekend, though, and I'd really like not to feel horrible. I'm thinking that I might just sleep normally until they schedule me for the sleep study and then I can schedule it out a ways, like a week when I know there's nothing else going on! Then I can really try the "sleep-deprived" thing for the week prior to the study. I'm sure I'll be symptomatic!

AJW, interesting article! That pretty much supports what my sleep doc was saying. Although I noticed toward the end they said this method works if you're healthy otherwise. Oh well! I understand about not wanting to bug your docs for MORE tests, too. I've been complaining to my primary doc for months about this snoring and apnea, but she just wanted to do one thing at a time and get me to Mayo (which I went to last month). Now that that's over, and I have a definitive diagnosis, she's more willing to follow up on other issues like sleep.

Wow Sophia, you describe how we deal with our issues so well. I'm actually in the middle of watching Gilmore Girls, too! I rarely watch intense or scary shows anymore, especially at bedtime, due to the racing thoughts/adrenaline. Due to being diligent about fluids, salt, compression, mild exercise, and stress reduction (all the tips Mayo gave me last month) I've been feeling better in the last few weeks than I have in years! My sleep seems to be much more sound, too, although my hubby still complains of the snoring/apnea stuff.

Mkoven, this doc actually took my sleep apnea seriously but when I described my frequent wakings, lack of deep sleep, vivid dreams, etc. he called it insomnia. I know that these sleep disruptions are more pronounced on my more symptomatic/adrenaline-filled days. But I know what I have to do to treat that... just manage the POTS! If I have apnea that he can treat, then that might help even further with my POTS symptoms too. He also thought it was significant that my dad has had bad obstructive apnea for years.

Thanks everyone!

Unless someone has been chronically ill themselves, it's practically impossible for them to "get it." My good friend is also my physical therapist that I see once a week and she asked how my leg pain was doing after a treatment. I said I think it's better but it's hard to tell because my feet are burning so much today (from my small fiber neuropathy). She said "are they like that ALL the time?" Duh! I've known her for 3 years and she's a medical person. I talk with her on the phone a couple hours a week. She was one of my main supports last year when my pain got so much worse.

I'm sorry for the disappointment during your interaction with your sister, Jump. It is frustrating when you've put so much effort into communicating your disability and illness. I just don't know if healthy people really have a frame of reference to the extreme modifications we make EVERY DAY in order to live.

Unless they are living it, feeling it, or come home to it every day, healthy people won't get it. They don't have to make constant accomodations for their disabilities, juggle meds or activities, plan simple tasks to the Nth degree... I try not to take it personally, as my hubby (who gets to live with me ) and my mom (who has carcinoid syndrome) DO "get it." And, of course, you guys do too!

We're always here for you!

Yes, thanks for posting. I watched Oprah yesterday and was impressed by how she handled a topic that most people don't want to address. I have constant nerve pain from neuropathy, and I was really touched by how Montel talked about "living well" and happy even though he deals with so much constant pain. So many people only know what it's like to feel sick for a few days, it was nice that she focused on how he deals with his constant illness.

I saw a vascular doc who wanted to put me on a calcium channel blocker for what he thought was Raynauds. Then my EP cardio said that the calcium channel blocker would exacerbate my venous pooling. My left side is more prone to cold problems, while my right side is more prone to pooling and redness.

Yes, Rene, I can relate. One of my first symptoms of small fiber neuropathy was that in slightly cool temps my feet and hands were freezing and would sometimes turn purple on the ends of my toes and I got chilblains. I went to doc after doc and a skin biopsy came back as pernio (frostbite) but I spent most of my days laying on the couch! Then in the summer, my feet and hands began turning red and feeling like they were burning. A dermatologist then diagnosed me with erythromelalgia (a fancy word for red hands and feet!). If I spend too much time upright, exercise, or at night my extremities are red, hot and painful! But if I spend too much time sedentary and it's 70 degrees or below in the house, they get cold and pale or even bluish. I spend much of my days putting on socks and taking them off again!

Strange thing is that around 7-8pm, my feet automatically become warm and red and the socks come off for good. For a year, I haven't been able to sleep with blankets over my feet/hands because the blankets seem to trap heat around my already burning extremities and exacerbate the pain. I can usually ignore the burning at in the daytime but often have to take a mild pain pill at night to sleep through the pain. In the summer, we don't have great air conditioning and by the end of a warm day the burning in my feet and hands has spread inward to my torso and any clothing feels extremely scratchy and hot. I often can't bear to be touched by another person because their warm skin feels super hot to me. Sometimes my whole body looks flushed. My face is also always burning, even my mouth. I spend hot day drinking iced beverages or sucking on popsicles. What helps my hot extremities is rest and elevation, draping cool wet cloths over them and laying in front of a fan. I sometimes cool my feet in a cool water bath when I'm desperate.

I had a skin sensation test at Mayo where they put a metal disk against my foot and make it cold and have me rate the coolness. Then they moved it up my leg to see if I had the same sensations everywhere. Then they put the disk back on my foot and made it mildly warm and increased the temp. Every warm sensation felt hot and painful to me, and in between bursts of warmth the disk would cool back to room temp but my skin still felt like it was being burned. I couldn't tell even when the disk was removed. I looked down at my leg expecting to see a big blistered area but my skin was normal. It's just my nerves that are messed up!

My mom also has small fiber neuropathy with no known cause (although she also has carcinoid syndrome) and a tremor that her mom has. She came down with these things in her 50's, but my case seems to be much worse and I don't know if the tremor is related or not but I've had shaky hands since my 20's. I'm now 35.

The Mayo doc says that my POTS is secondary to the small fiber neuropathy and that it's the small nerves that regulate the diameter of our smallest blood vessels, which is why my feet and hands turn funny colors. I've been diagnosed with perniosis, raynauds, erythromelalgia, purple toe syndrome (loved that one!), but small fiber neuropathy seems to be the cause of all these problems. This is probably more than you wanted to know, and my symptoms seem to be somewhat on the worse side, but small fiber neuropathy can either be a cause or a result of dysautonomia. It might be what's going on with you.

Congratulations, hopefulcase, on your great new job, but mostly on your brave decision to work in spite of your illness!

Just said a little prayer for you...

OK..maybe its a good thing to do the 8 hours only..for some..but not others with co-disorders!!

I have had a sleep disorder..looking for narcolepsy with cataplexy. I have apnea and got the nose mask only..forget what its called. It took awhile to figure how to make it fit tight enough that there was virtually NO sound. BUT it would wake me up when I turned and it started hissing. I just couldn't take that..I gave up..tried again...gave up. I think I will have to try again cuz I have DAYTIME APNEA

Anyone else catch their breath cuz of apnea while awake??

Still waiting more testing for narcolepsy with cateplexy. Of course my symptoms are not the standard ones.. my episodes ALWAYS begin with autonomic symptoms..tachy..high BP/HR..then I get so weak I feel as if I am losing conscious ness..cannot move arms or legs or remain alert ...BUT.. I can HEAR... just cannot MOVE!!

Hence my user name is Whats Wrong With me??

Jan

Hi Sophia, I was totally thinking what you were saying during my appt today... I don't think this doc understands ANS issues. But that's fine because all I really want is a sleep study to make sure I don't have some serious apnea going on. He is supposed to be the best in my area at reading sleep study results. My hubby doubts his sleep schedule suggestions will be helpful for me. At least I can say that I tried... but I'm certainly not going to torture myself either and go into a POTS-hole . Thanks for your input!

Hi Jan, So sorry to hear about your horrible sleep issues and daytime apnea! And paralysis! Yikes! This doc was a neurologist who specializes in sleep disorders, but willingly admitted not knowing much about my orthostatic intolerance. I'll just take what I need from him (a sleep study) and move on!

Thanks guys, Janie

Thanks Suzy and Mkoven! My hubby already uses a CPAP so we'd be a matching pair (if I need one)!

And thanks, Firewatcher! I go to bed at the same time every night (because of my husband's work schedule), at around 10:30pm. It will be hard, but I'm going to try to wake up at 8. Maybe it will help! I know that's more than the doc's recommended "8 hours" of sleep, but I feel so much better when I sleep at least 9 hours. Waking up at 8 will still be earlier than normal for me, and I can see how my POTS does on the less sleep. If I do okay after a week or so, then I'll go really crazy and start waking up at 7....

Firewatcher, I've read some of your other posts about delayed sleep phase disorder, and while it doesn't seem like it's what is wrong with me, I wonder if I'd function better on a different sleep schedule than my husband's. Prior to POTS, I worked second-shift as an RN from 11am to 11:30pm. I did really well going to bed between midnight and 1am and getting up at 9am. Maybe I need to adjust my bedtime. Hmmmm, just a thought.

Suzy, it took my hubby about a week to get used to the machine (my dad, too, who also uses a CPAP). But they both had SEVERE sleep apnea, I mean they'd stop breathing every few minutes. They both felt so much better immediately after using the machines which motivated them to keep wearing them. But my hubby didn't like it at first and ended up pushing it off in the middle of the night for a few nights. He likes his mask which just blows into his nose, not the big mask that goes over the whole nose and mouth.

I know it's common for us folks to have sleep issues. My hubby says I've started snoring about a year ago, but in the last 6 months he hears me stop breathing at night too. I rarely get a restful sleep, seem to wake every couple hours, or stay awake early in the morning. Last night I slept finally for 11 hours straight!!! I feel so good today. I notice that my POTS symptoms are much less noticeable on the days I get 9+ hours solid sleep.

So the sleep doc (who's supposed to be the best in town) is scheduling me a sleep study. But he said that if my problem isn't apnea, that most people with insomnia benefit from maintaining a strict 8-hour sleeping schedule. He suggested that I try getting up 8 hours after going to bed no matter how well I've slept, and that after time my body will "reset" itself. I think this would be true for normal people, but I know on days I have to get up early I feel horrible and even more POT-sy.

Has anyone tried this 8-hour sleep schedule?

I think I'm going to stay with my usual long sleeps until I've had the study and we know what's really underlying my sleep issues. But I was just curious if anyone else has had this suggested to them or if you've tried sticking to an 8-hour sleep schedule?

Hi Suzy,

I completely understand your apprehension. I'm sure most of us have been to doctors that we never want to ever see again. Also, it sounds like not only did he have a bad attitude towards you, but that he's lacking in his ability to effectively treat patients! I don't remember where you live, or if you are in a small town. I live in a large town where there are many specialists to choose from, so if I were in this spot I'd call my primary doc (who's very willing to help me) and ask for her recommendation for a different doctor. If she still wanted me to see Dr. Meanie, I'd explain my past experience.

I remember from your past posts that you've had a very difficult time with your local hospital and physicians, that they mistreated you and accused you of faking sick and stuff. Do you have ANY doctor who is on your side, and will help you get a referral to a different specialist?????

Sounds like you might be finally getting some answers, though!!!!

Janie