janiedelite

Last, how on earth do you ever get used to drinking so much water?! My doctor told me to drink 100 oz a day, and that just seems impossible to me. I don't know if that amount was scaled for someone my size (I'm very short/small) or if that's how much he tells all his NCS patients to drink. On a good day I can get up to 60 oz but even then I feel like I'm going to pop! Does it get easier? Are there any tricks?

For me, I just have to carry some liquid with me wherever I go. I keep a G2 by my bed at night so I can drink it when I first wake up because it contains sodium. I do feel really waterlogged at times, and I've only been forcing so much liquids for the last few days based on my doctor's recommendation last week. But my heartrate is much improved and I'm able to do more around the house ! I don't know if your doc wants you to take in a lot of salt, but salt helps us to retain fluids. I like salty fat-free chips or a cup of chicken broth (which has over a gram of sodium).

When my abdomen is too tender I like to wear my 20-30 mm thigh-high compression hose.

My pooling pain doesn't sound nearly as painful as yours, but when I went to a store that sells compression garments I asked about compression for my hands and arms. Unfortunately, it's really expensive ($250 for each glove because they're custom-made, and $90 for each sleeve).

I'm sorry you're hurting so much. I hope you can find some relief!

Hi Thankful,

How did your PT adapt the exercises for laying down? Maybe if I start that way I could work my way to standing. Has anyone completly reversed their pots with exercise? I am starting to see this is for improvement, definatly not a cure. I do have a heart rate watch, and found interestingly enough that my heart rate goes down just a bit when I do a fast clip walk. But then goes up real high when I stop and stand still. It also goes up progressivly climbing steps. I would think if I were just unfit it would go up no matter the activity. But what do I know. Thank you for the help. I will try to adapt my exercises somehow for laying down for now.

Suzy

My PT knew which muscles groups in my hips and legs needed to be strengthened and assigned the appropriate exercises while adapting them to the lying down position. Dr. Fealey really emphasized that part of my POTS is probably due to deconditioning, but most days I have such a rise in BP with any exertion and he said to stop as soon as I have symptoms of hypertension, which takes maybe 5 leg lifts unfortunately. So he also recommended that when I'm laying down that my head/torso is elevated and that we even elevate the head of the bed. He said that should help with strengthening the smooth muscle lining my blood vessels in my legs. We'll see how it goes... I'm pretty deconditioned, and have had worsening POTS symptoms over the past 2 years. It would be great if implementing his suggestions will give me some more activity tolerance and prevent my frequent flares.

I'll keep you in prayer that you can get some answers and effective treatment. You've certainly had such a long road.

Yes, we can and often do go over our target rate and run high for short spurts. As long as it isn't prolonged or causing constant pain, we are allowed to "work through" these. I usually just sit down. It is the cumulative result of running at high rates that makes me get wiped out.

I agree and this sounds like the advice Dr. Fealey gave me also, that I should do whatever activity/exercise my body will let me do without getting hypertensive. I can tell when I'm hypertensive because of the chest pain and shortness of breath that accompany it. Sometimes my heartrate is rather normal (90's while being up) but I go by how my body feels because of my tendency for hypertension. I'm so glad I have a BP/HR monitor. It makes me connect how I feel with the numbers so I can know when I need to take it easy.

Not all POTS patients have hypertension, but I think it's a good idea still to listen to your body.

You bet! Thanks for reading!

I thought of another question . When I was having my autonomic tests they had a beat-to-beat BP cuff on my finger. One of my complaints has been that on most days I have increased chest pain, tightness, and shortness of breath while talking. So I could watch my BP on the monitor during the tests and when I'm at rest it's normal (120's/70-80's), but I was chatting with the tech and noticed that it went to 150-160's/90's while I was saying a sentence. When I stopped it took about 20 seconds but returned to normal. As soon as I started talking again, same rise in BP. I know my catecholamines were high, so is this just another symptom of my overactive sympathetic nervous system? Has anyone else noticed this?

Some days I don't even answer the phone any talking makes me feel so badly.

I was just thinking about when Dr. Fealey said he believes I have the kind of POTS that occured primarily as a result of damage to the small nerves in my skin and blood vessels. I asked him if since I had norepinephrine over 1000 when standing if that categorized me as hyperadrenergic and he said "you could say that." So I've been reading on hyperadrenergic POTS and it seems that these patients' increase in heartrate and BP is due to primarily a defect in the adrenal response, and not so much an adrenal response to venous pooling. Do hyperadrenergic POTS patients have peripheral nerve damage which leads to venous pooling, which leads to an adrenal response to maintain perfustion??? I'm a little confused. Thanks

Yeesh! I hope you're doing alright. Personally, I'm already dreading summer even though it's over 4 months away.

Hi, my PT wanted me to do squats, too, but they left me gasping for air with increased chest pain. When Dr. Fealey evaluated me, he had me do 5 squats and measured my BP and pulse in response. He said the legs use a lot of blood supply so for those of us with pooling, squats make us more symptomatic. My PT adapted my exercises so that I can do them on the floor, mostly supine. I still work the muscle groups that improve OI but it doesn't make me so symptomatic. Although it seems that most days I still get the chest pain and BP spikes even with supine exercises, and Dr. Fealey says I should stop at that point.

Maybe if you explain how our leg muscles use so much blood volume, your health care provider can adapt your exercise plan???

I'm so glad that Sara was able to enjoy her special day!

Congratulations!

Enjoy the "trying to get pregnant part" it ends too soon! You should feel better once you get over the first trimester's fatigue, let us know when you succeed!

Ha! You bet!

Well, I guess you guys aren't getting rid of me yet . My abdominal CT didn't show any tumors and my 5-HIAA is still normal, so no carcinoid syndrome! Dr. Fealey said I don't have any underlying illness, but I do have hyperadrenergic POTS. He said that the good news is that the autonomic tests that check for "central" dysautonomia were normal (I think that means that I don't have nerve damage anywhere besides the small nerves in my skin or blood vessels). He also suspects that my symptoms were post-viral, probably as a result of having mono June of 2006, and that I should get better in a few years...

My small bowel xray today actually showed normal motility and no obstruction, whereas last week's motility study showed severe small bowel dysmotility. I notice that stress makes my nausea worse. We know that I have an overactive sympathetic nervous system because of my high catecholamines, and he said the sympathetic NS constricts blood flow to the intestines which is probably causing my nausea/vomitting during a flare.

I didn't want to have a horrible underlying illness like lupus or cancer, but there is so little help available to help our POTS symptoms. He told me to wear my compression hose, down fluids and salt, maintain muscle tone, raise the head of my bed, the usual. He said I could try Nadilol for the sympathetic overdrive, mestinon and pyridostygmine for the pooling, or topical amytriptiline or ketamine for the skin pain. But he also encouraged me by saying that it should be fine for me to try to get pregnant . We were both glad to hear that! It would definitely be daunting to raise a child while having POTS, and he said I'd be at higher risk for pregnancy induced hypertension. But there's been so much taken away from us over the past few years, it would be such a blessing to have a child. We'll see.....

My urinary methylhistamine level was normal as well as tryptase. He said that if I don't see improvement that I should return to see him in 6-12 months.

It was so worth going to Mayo, and having confidence that even though I feel like I'm going to die, I'm really not ! Janie

I finished with my small bowel xray at 11am, and we went right to Dr. Fealey's waiting room. We waited several hours but they said he will see me at 3:00!!!

Hey this is fresh in my mind since I'm still at Mayo and did these tests just last week! Wasn't the sweat test horrible??? I had to do a 3-hour EMG (where they put needles in your muscles) and I still prefer that to the sweat test. I was really cold at the time of the sweat test and it took them over 1 and 1/2 hours to heat me to 100.4 degrees. I drank a liter of water right after the test (I turned all purple), but due to being off antinausea meds, antihistamines, and advil I spent the next night vomitting with a migraine. I was so sick my hubby wanted to take me to the ER, but I got him to just call the on-call neurologist instead who told me to take tylenol (I couldn't take anything else without messing up other testing).

My TTT showed a 40-50 beat increase in my pulse and diastolic hypertension. My valsalva test (where you blow in the tube) showed phase 4 overshoot (my BP was over 200/100). My QSART was normal. And I sweated normally. Basically my neurologist said I have hyperadrenergic POTS but that my autonomic nervous system seems to be functioning fine.

I recently posted under the topic "appt with Dr. Fealey at Mayo Rochester" about all the other tests I've done and what they've shown.

Take care, Janie

thankful,

If you don't know this, it is important...When you are from out-of-town you should go up to the appointment desk and explain your situation and asked to be moved up to an earlier time. They usually can see you much sooner, you just need to request it!!

good luck,

tearose

Thanks, my hubby told them but they said it didn't make a difference. They said that we could wait for an opening in the waiting area. We've asked twice to be bumped up. janie

Well I just talked with my hubby and he says even if we stayed and waited to follow-up with Dr. Fealey, if he were going to refer us to another specialty we would just have to wait again however many days or weeks. I think that if we can't see him by friday we will fly home and follow up with him on the phone on 2/18. We can always fly back again if he thinks I'd benefit from more workups under a different specialty.

Just finished my third 24-hour urine test (this is retesting my sodium level because it was so low the first time). I'm starting my fourth and final jug now, this time for 5-HIAA (which detects the serotonin released by midgut carcinoid tumors).

I'm so desperate and, like many of you, will do anything in order to get to the bottom of my illness. Janie

Your POTS symptoms are just like mine. Almost exactly. I am curious, did he give you a treatment plan?

Mine is electrolytes as needed, hydration, coffee ( which is another topic),compression. and hr monitor and seat cane as needed. Basically all behavior modification.

Thanks, Tearose. I don't have a treatment plan yet. If my intestines are slow from a neuroendocrine tumor, then we'll treat for that, probably surgically. If they are slow from nerve or muscle damage, I'll see a GI doc and try prokinetics. He doesn't know how to treat my vasoconstriction caused by high catecholamines (manifested by pernio/frostbite) and simultaneous vasodilation (manifested by hot, burning pink skin). He said that any drug used to dilate or constrict doesn't select which vessels it dilates or constricts. I told him that my problem is that whatever this is, it is getting worse. Just waiting in his waiting area one of my big toes kept aching and turning white and my hubby kept having to warm my feet. Yet, my thighs, torso, and face and almost constantly flushed and warm with this burning feeling. I'm waiting to get my urinary methylhistamine results still.

It looks like my neurological system is probably just fine and Dr. Fealey said that he was ordering the necessary GI or endocrine tests, but he was actually asking me what scans to order in order to detect carcinoid tumors. Which is just fine; I've been learning about carcinoid syndrome for years now in order to help my mom. He ordered an abdominal CT with and without contrast, but some carcinoid tumors can only be found with exploratory surgery.

He suggested staying hydrated and wearing compression hose, but for me the compression hose are starting to exacerbate my hypertension and related symptoms (chest pain, pounding headaches, bouncing vision, etc.). He also told me that I should not eat a lot of salt since I have such labile blood pressure (running from normal range to very high).

He wanted to follow-up with us after this second round of tests but unfortunately he's leaving next tuesday on vacation and they can't schedule me til 2/18! We finish with my barium swallow (to check what's blocking my intestines) Friday at noonish and are going to try to camp our in his waiting area with the hopes that he can squeeze us in.

What should we do if we can't see him til 2/18??? Staying for an extra week and a half would be so costly and if they want me to stay for more tests that will mean more money and hubby's time off from work. I could stay by myself if the hotel staff can help wheel me down the long halls to Mayo. Yeesh...

Still, I've learned more about what could be wrong over the last 2 weeks than I have over the last 40 appointments with local docs and specialists. If there is any hope for an answer, then I'll be happy to stay. I also have an appointment in early march with the endocrinologist who diagnosed my mom's carcinoid syndrome. She's pretty good.

I just wonder if staying here will be worth all the expense and get me the answers I need. Any thoughts anyone????? Thanks, Janie

Okay, I posted earlier about the abnormal EMG results but Dr. Fealey said that the EMG was essentially normal. Otherwise, TTT showed tachycardia and hypertension, valsalva showed phase 4 hypertension, catecholamines standing were over 1000 (I guess that's really high), urine sodium was really low, small bowel has very slow motility (explains the nausea), and abnormal heat sensation on my skin. So he said I have hyperadrenergic POTS, small bowel dysmotility, small fiber neuropathy. He doesn't know why my small bowel is so slow if all the other autonomic tests are normal. He added a few more labs, abdominal CT, MRI of brain, and a small bowel follow through. It sounds like I have POTS, but he explained that POTS is just a collection of disorders that cause postural tachycardia. He doesn't know why my blood vessels are behaving the way they are (arterial constriction/pernio and venous dilation). He wants to do more tests to further rule out carcinoid syndrome (the cancer my mom has).

I'm happy with these results because there is nothing really life-threatening, and since my symptoms are progressive I was concerned about a progressive neurological disorder and there's not much that can be done about them! Is it crazy to be happy that I might have cancer? In my mind it's at least something that has a treatment...

Dr. Fealey was originally going to send us home with strict instructions to get all of these tests done there asap but we asked him if we could just stay at Mayo since it takes so long to get in to the doctors to order the tests, schedule the tests, and he wants them done a certain way.

Hope you all are doing well.

Thank you for posting about your wonderful doctor. As with Persephone, my GP is much like the neurologist you described. I also think that most of the doctors who gave me insensitive, ignorant or faulty advice just didn't know how to deal with my complex array of symptoms. I will send them all notes after I finish with my consults at Mayo in order to encourage them not to give up no matter how daunting the patient's illness seems. I'm a nurse, and recognize that doctors are human and prone to fear in these situations. Hopefully I can let them know that there is hope for helping even the sickest and most complicated patients so that the next medical mystery who walks into their clinic leaves with a little more hope than I did.

Bravo to your neuro!

I also agree with Mighty Mouse and Mom to G. My brother, mom and I have all come down with rare neurological disorders in our 30's. Different disoders, but I have to think there is a genetic connection.

I've always been a very happy, positive person. One of my coworkers voted me the person with the highest EQ even (emotional quotient which rates how well people get along with others and themselves). I think maybe having mono in 6/06 and then a car accident in 9/06 might have triggered my illness. I haven't had any control over my symptoms/illness and have tried every avenue to get better (diet changes, accupuncture, counselling, vitamins/herbs, etc).

Yeesh, Ernie! I can't believe it! (I mean, I can believe it but what a shame that you never received the follow-up because abnormal EMG results are scary! )

Thank you Flop. I'll let you know how things go.

Janie

Hi guys,

I wasn't going to post, but my husband and I are pretty anxious about the abnormal EMG I had done Thursday. I have been having twitching in my arms that I mentioned to Dr. Fealey (at Mayo) when I saw him Wednesday. And I have the same tired, draggy, heavy leg feeling that many of us have. I've been having the fasciculations/twitches in my legs more frequently. Last night I just laid there feeling twitches in my legs, abs, back, arms, etc. thinking about what this might mean. I have had MRI's of my neck and lumbar spine and just have a couple areas of minor nerve root compression that I've had for over a year.

When the neurologist did the EMG, it was supposed to take just an hour and involve 3 muscles on my left leg. It ended up taking 3 hours because he kept leaving the exam room and talking with his supervisor. He said that my muscles kept showing nerve conductivity at rest. He did 7 areas on my left leg and one area on my right leg.

I see Dr. Fealey tomorrow and part of me just wants to know what this means, but I'm dreading it too. My TTT was also indicative of POTS, my BP shoots up with minor activity even talking, BP was over 200/100 during the valsalva, sweat test was normal, and I did lot of more tests including labs but I will hear the results tomorrow afternoon. I just keep reading bad things about abnormal EMG results. I know you guys can't diagnose me or anything but had anyone here had abnormal EMG results without nerve compression?

Thanks and I'll post after I meet with Dr. Fealey, Janie

[*]Personally, I never step into a Doctor's office without a support person of some kind.

[*]You may want to take a clip board or pad of paper and take YOUR OWN NOTES as the doctor is talking (can you imagine what your allergy specialist would have done, if you calmly clicked your Bic and nodded your head as he was "lecturing you" and you jotted down some notes in short hand on the pad.)

[*]Remember what your goal is for going in ... You want the tests done for mast cell (or whatever else it is that you want to rule out at that particular visit). You don't care if the Doctor believes you or thinks you are totally insane. Get the tests! And then take the next step.

[*]What is the next step? Coming here, where you are among empowering friends who will give you a hug and help you feel just a tiny bit better at the end of a long day.

I totally second what Earth Mother said! I always have someone with me. I'm a nurse, and have had tons of confidence talking with physicians until they stopped believing what I said about my own body. I think some docs have to have all the answers, and if you don't fit into their picture then they either dismiss your symptoms saying they don't exist or that you're exaggerating.

Today I went to pick up my skin biopsy to take to Mayo tomorrow and the dermatologist said something about my POTS diagnosis like "you're seeing so many different doctors they can't keep up and they're just labeling all your symptoms." Like it was my fault that I was being sent to so many different specialists! I was feeling really run-down already and this almost pushed me into tears, but I put my head down and forced myself to concentrate on anything but what he said. I knew if I gave in to tears, it would wear me out for the rest of the day and I had to pack and clean still. I just needed the biopsy, and left without saying anything. This guy has been patronizing on other occasions, but I just needed him for this biopsy.

Either way, keep believing that there is someone out there who can help you! It will be so worth the battle when you get some answers from a doctor who is willing to see the whole picture of your symptoms. You have to keep fighting for yourself because no one else really knows your story, symptoms, etc. You are your best advocate!

You have been through so much. It must be really hard to keep your chin up and try more doctors, tests, etc. I'm glad your husband is willing to help you through this. Please keep looking for answers and treatment!

For those of you that take an allergy medicine + Zantac, what was your starting dose? .

I take 10mg zyrtec once a day and 150mg zantac twice a day. I have really bad acid reflux and nausea, though, so you can take 75mg twice a day of zantac.

You've posted for awhile now about your nausea and problems eating. I'll certainly pray with you that these docs will know what to do. I'm glad you have more hope now. My husband and I are praying that Mayo will have answers for us next week when I go there, too. Janie