Back From Mayo

[Guest tearose]

Well, I returned this past weekend and finally have been able to think about all those tests and look at all my notes...

I had an excellent work up and my expectations were exceeded. I was treated with respect and feel like my heart, mind, soul, body, spirit...all got an incredible workout!!! No regrets. I feel fortunate to have been able to get the funds from family to go and be so "selfish" and take care of tweaking me!

I had mostly news that showed no real major differences. I didn't go immediately to 155bpm on the ttt but I still got to 135bpm and had symptoms. ( I think these tests can vary too, but I am not a doctor) I still have POTS, hyperadrenergic, but the adaptations I have made with supplements, compression, careful exercise and hydration have helped. I use a seat cane too.

The pain and numbness in my face and chest and arm are problems connected to a bunch of nerves in the "stellate ganglia" I also have a funky rib cage that presses on the thoractic area and I have some funky lymphedema too so before we blame this numbness on my hard working heart, I will start some PT next week to see if I feel any better.

The heart showed some PSVT's and I kinda feel, "so what" about it. I know how to manage this and it usually only happens if I don't sit down or if I've been too active without recuperating...naturally, I was given no opportunity to wear compression or sit down during some of these tests so I feel they captured some of my rougher times.

I do not have good sleep efficiency and very unfortunately, the sleep center is not yet able to understand or interpret why awakenings happen in POTS people. I am not on any meds that would effect sleep. I am going to try to NOT wrap my lymphedema arm at bedtime for a month and see how I feel. I will take care of my arm during the day... one more "maintenance" job I have to cram into my daytime!

Anyway, I do have a grade 2 rectocele and grade 2 cystocele which is hopefully going to respond to kegel exercises.

It was good to get validation for the symptoms that my local doctors did not know how to understand.

I feel a renewed confidence in my own understanding of my body. I am relieved to understand that I am not having cognitive decline, I do have poor sleep which makes daytime thinking and memory challenged.

So, I first had POTS symptoms in 1991 and things have been steady since then.

I am physically disabled because of my challenges and I am finally able to state this and start looking to make some new goals.

I will work on better sleep. I will look for part time work that is manageable. I'll keep counting my blessings.

Thank you for your support!

best regards, tearose

[Dizzy Dame]

Tearose, I'm so glad the visit went well!

I know those big workups can be extremely emotionally, mentally & physically draining. It sounds like you're stable, though, which is a blessing. Hopefully within the next few years, more will be understood about POTS and sleep problems, I know so many of us have a heck of a time getting to and staying asleep.

Anyway, welcome home

[persephone]

Thanks for this Tea- you are an inspiration

[Rachel]

Tearose,

Thank you so much for sharing your experience at Mayo with all of us. That is wonderful to hear that your time there exceeded your expectations!

Congratulations on making it safely through your two weeks of tweeking.

Rachel

[P SUDIK]

Hi T, so glad you are back safe and sound, and that things went well for you. I have been thinking about you since you left. Welcome home, HUGs, Pat

[Eli6596]

Hi

I am so glad to hear that you had a productive trip. If you are like me, it is sooo draining to travel and then undergo so many tests. I always enjoy reading your posts.

Which doctors did you see at Mayo? I saw Dr. Low but it has been years since I returned due to the time, hassle physically and cost. My cognition is not what it used to be either. A good night's sleep is hard to get for me too. Sleep seems to be the key to a good POTS day and good for cognition for me too. So much more research needs to be done.

I get the feeling that you might have felt hesitant to use the word disability? I have felt the same way even though I clearly know that I am physically limited. When I am in my routine life, I deal with the limitations pretty well except during a cold or flu. When I travel to a meeting out of state like I did last weekend, it becomes glaringly obvious that I have big, big limitations. There is nothing like a huge airport to make me feel inadequate physically and so dependent on others!

I hope the "tweaking" makes you feel so much better physically. For me that usually makes me feel better emotionally too.

Karyn

[Guest tearose]

Thanks for the feedback pals!

Karyn-My main physician is a neurologist Dr. Fealey. I can not say enough about his thoroughness in diagnosis, professionalism, and willingness to patiently explain and discuss my ANS, heart and health issues. He truly left no stone unturned!!! I also was seen by Urology, Gynecology, Sleep Center, Lymphedema Clinic, Nuclear Radiology, Cardiology, EP Cardiology, and the ANS lab...I was busy for a full two weeks between tests and doctors and follow ups.

I was under the microscope! I have such a clearer understanding of my body now and I am so relieved to know my cognitive fuzzyness is due to poor sleep, GERD, possible pain from sleeping on my lymphedema arm, and not to a neurodegenerative problem!

As far as the term and acceptance of disability...I accepted the term and limitations a couple of years ago...when I finally came to terms that I wasn't getting any better. This time, I finally accepted the fact that I do not have to find a job "below" my cognitive ability just because I have physical limitations. I feel more empowered now to look for work that will be rewarding and not feel apologetic about making my accommodations/ needs made clear from the start. It took me years to even see this! I hesitated to ask for accommodations until now...how silly was that!

About the whole trip and appointments and travel...it was hard. I think that is why I hadn't been back to Mayo for four years. I went alone and did whatever they requested...the consults the testing and resting...it was about taking selfish time to face my health problems and to try and find better healthier ways to manage them. I made it clear that I wanted to do as much as possible without drugs or meds or surgery and I am delighted to say my Mayo experience exceeded my expectations. Now I think I need a month to recuperate!

Actually, I am already trying ways to address the sleep issues AND, I have started to look for a job again.

thank you for letting me share!

best regards, tearose

[DancingLight]

Tearose,

I know you had so much riding on your Mayo trip and I am incredibly THRILLED that it EXCEEDED your expectations. How often can we say that about such doctors visits? (Although, I have NOTHING to complain about in this department either).

I'm sorry I didn't get to check in when you posted from Oz...I meant to! Just got, well, sidetracked and ran out of energy points (love that phrase and I learned it from YOU!)....I was amazed you were even able to post while going through all of that.

I am really just tickled that you got the information that you wanted and that every part of the trip--emotionally, physically, financially, and spiritually--was worth it.

Thank you for updating us...I've been watching for an update from you.

The only part of your post that really struck me was that you called it 'selfish' to go to Mayo? Why? Must I remind you of the importance of healing ourselves in Judaism as part of healing the world as a whole? Also, I would hate to think that being sick or needing medical care or being disabled makes us in any way selfish. You would not think your beloved sons selfish to do the same, and travel for the medical care they need. I hope this does not sound harsh, that is not my intent--I just really found it striking that you would even say that about yourself! People on this board love and cherish you, and the last thing they would say about you is that you are selfish.

Anyways, I am sure it is a relief to be home and done with all of the testing. That is quite a work up you have had! Whew! Sounds like they checked every inch of your body!

Welcome home,

Emily

P.S. What sort of job would you like to do? Can you remind me what your degrees are in and what you worked in before the world changed for you?

[Guest tearose]

Good to hear from you Emily, it doesn't matter when you write, I know how busy living life you are!

Oh! I did mean "selfish" but in a good way!!! Is there another word for this? The way we talk about if we don't take care of ourself how can we be there for others. I think it sometimes is hard to put ourselves first in such a way. For me, with two in college and not having been able to work a job, I worry about our finances. I would have rather taken a little fun time my husband but I just knew I HAD to do this for me and I had to do it soon. I don't know another word for this. Thank you Emily, I didn't know it sounded harsher than I meant, I promise, I have no "guilt" over the trip!

I have an Associates Degree, a Bachelors Degree and a Masters Degree. My "work" skill/ gift is program design and implementation. I am open to try different fields however most of my work has been with non-profit organizations. I am trying to adapt my skills and focus on the accommodations. (needing to sit down and not carry and not overdo)! I'll let you know as things develop. Right now I'm open to new things and so I am interviewing at a little gift shop in town and a garden center next week. It is frustrating to know that in my field at full time levels I would make $40/hour and since I am looking for part time, I will be lucky to make $12/hr!!! We always have to make compromises it seems! Hey, it is a start!

I wrote a children's story a few years ago so I will also try to work on getting this published in the next couple of years. Maybe this will be the work that returns the funds that covers "retirement" and the "golden ages"...always hopeful...

best regards, tearose

[Eli6596]

Wow, you REALLY did get quite the workup! I am glad you don't feel guilty-selfish. Fine tuning our health to the best that it can be ends up helping others too. If we have better health, our families benefit. If you are able to rejoin the workforce, others outside your family will benefit from your contributions. So, in the long run, improving your health is not really self centered.

I am glad that you will let prospective employers know of the need for accomodations. When I was searching for a new job four years ago, I was very upfront about what I can do and what I cannot do. I made it clear that I do not have a degenerative disease. By being up front before being hired, we make sure that we WEED OUT the people who would not value us, and probably give us heartache due to our illness. We don't need THEM. Out of dozens of prospective jobs, I only found three that would accept me in the area of the U.S. that I want to work. I was hired by a group with whom I was totally upfront. Since my hire nearly four years ago, they have continued to be understanding. They have been open to my ideas of small additional accomodations as well. For example, my nurse and exam rooms are located so that I don't have to walk too far from my desk. I have never had to fight with anyone about health related issues at my office.

I hope you will have an understanding employer too. They do exist but we have to dig for them.

Karyn

[DancingLight]

Thank you for clarifying Tea!

I wouldn't say it sounded 'harsh'--I just wondered if you really viewed it that way. But, now I see what you meant. Then, after I wrote the email...late last night, I was psychoanalyzing MYSELF (look out! ) and realized that maybe what struck me was that I would never want people to see me as selfish b/c I am sick and trying to get better. I want so much to be functioning and not dependent on my family to FOR everything b/c it drains them. So to me, in some ways, seeking out answers, although also draining, means MAYBE taking that burden off of my family someday if I can get healthier. So, I think it was about ME and not so much about you. Lesson learned on both ends, eh?

Later alligator!

Emily

[MomtoGiuliana]

Hi Tearose

Glad to hear you got a good idea of where you are physically--and have reassurance that you do not have something progressive going on. Did the doctors ultimately recommend any changes in treatment that you want to follow?

Good luck in your next job search!

Katherine

[Guest tearose]

Hi Katherine, I was meaning to ask you how you manage working. Any suggestions as I try once again to become employed?

As for the doctor's suggestions... they were rather pleased that I was using my seat cane, compression and had the formula for electrolyte supplementation and protein supplements...oh, also, I am not deconditioned, depressed or otherwise mentally impaired. They were very interested I think, because I have documented symptoms dating back to 1991 (Mayo dx lymphedema but POTS not understood or dx then) and my first TTT was at Columbia Presbyterian in 1998 where POTS was first spoken of...anyway, I am living proof that not all those with POTS get better and in fact still go through periods of remission and relapse. They are most concerned with my PSVT's now showing to pop up and take off and they don't want me to have to suffer repercussions of any damage from these. I had to reassure my neurologist and the EP cardiologist that I do not intend to go without compression garments nor do I stand still and let the SVT or PSVT even happen. Right now I feel like I can manage to avoid these. I always get "snow" or a "norepinepherine dump" before the heart takes off. The EP thinks maybe "someday" it may become to hard to manage and I will revisit the EP study suggestion. Right now, I think there are many things I can try to do to avoid that path. I'm working on getting restorative sleep first!

thank you for your interest,

best regards, tearose

[Guest tearose]

Oh, Karyn, I meant to ask what job you have done for four years? Do you have any suggestions for finding the right fit and balance in an accommodating job? Did you have to take part time? Did you have to take a salary cut? What are the maximum hours you can manage and still have energy to take care of the dinner and laundry?

any suggestions are welcome!!

tearose

[DancingLight]

Tea,

Karyn is a neurologist....

Em

[Guest tearose]

Oh gosh Emily, I think I knew that once...

Karyn is a neurologist. I forgot!

I'm still curious how everyone manages not to burn out!

Do you working people work part time and/ or have help with house chores?

I just can't figure how to do both?

best regards, tearose

[deucykub]

Hi, tearose:

Welcome back home from Mayo! I really enjoyed reading your posts during your time there. It sounds like an amazing and informative experience. It must be such a relief to know more about what is causing some of your symptoms and health issues from all the detailed testing and analysis. What an adventure!

I share your dilemma about working and taking care of the home. My home (an apartment) has been terribly neglected since I started getting sick. It seems if I don't save every ounce of energy for working, that part of life bites the dust, so to speak. If I vacuum today, I can't work tomorrow. My husband really tries to help by at least keeping the dishes done and vacuuming. He finally got the hint that I really needed laundry done when I started wearing his clothes! The poor guy just took a car-load full of laundry to the laudromat. (I am so thrilled that I will have clothes again! lol)

I wish I had some tips to offer about balancing the two or even about getting back to work. It's thrilling to hear that you are starting to think about getting back into the workforce, though. What a huge step forward!

You really are an amazing person. Your posts always show such creativity and imagination!

I'll be thinking good thoughts and praying for you as you start to look for some part-time work.

Deucykub

[BuddyLeesWife]

I'm glad you continue to find more answers (and validation).

Quality Sleep has been my focus since my husband began CPAP therapy and started seeing much improvement in his symptoms. This morning I found another article on sleep and the autonomic system. I am wondering if the "sleep micro-arousals" are what my husband was experiencing and if the CPAP has helped resolve them. His sleep study resulted in about 110 apneas and 165 "muscle twitches" - the dr's felt that the muscle twitches also kept him from reaching the restorative sleep stages. These twitches were not noticeable by us (its not as though he was jumping and jerking in bed) so maybe they were similar to the micro-arousals in the article. Whatever the explanation, he says he feels better than he has since 1998 when his symptoms kicked into high gear. Since you mentioned sleep, I thought I would comment once again on our positive experience and include the article abstract. Wishing you Sweet Dreams...........

Genesis of sleep bruxism: Motor and autonomic-cardiac interactions

This is a short review paper presenting hypothesis to explain the mechanism that may be involved in the genesis of sleep bruxism (SB). In humans, SB is a repetitive sleep movement disorder mainly characterized by rhythmic masticatory muscle activity (RMMA) at a frequency of 1Hz and by occasional tooth grinding. Until recently, the mechanism by which RMMA and SB episodes are triggered has been poorly understood. It is reported that during light sleep, most SB episodes are observed in relation to brief cardiac and brain reactivations (3-15s) termed "micro-arousals". We showed that RMMA are secondary to a sequence of events in relation to

sleep micro-arousals

: the heart (increase in autonomic sympathetic activity) and brain are activated in the minutes and seconds, respectively, before the onset of activity in suprahyoid muscles and finally by RMMA in jaw closing masseter or temporalis muscles. In non-human primate study, we have shown that the excitability of cortico-bulbar pathways is depressed during sleep; no rhythmic jaw movements (RJM) are observed following intracortical microstimulation (ICMS) of cortical masticatory area (CMA) during sleep compared to the quiet awake state. The above results suggest that the onset of RMMA and SB episodes during sleep are under the influences of brief and transient activity of the brainstem arousal-reticular ascending system contributing to the increase of activity in autonomic-cardiac and motor modulatory networks.

PMID: 17313939 [PubMed - as supplied by publisher]

[Guest tearose]

BuddyLeesWife, thank you, I thought my micro arousals could be ANS issues and it is frustrating that my pusle ox was so good!!! I thought for sure I was not getting O2! The Mayo sleep center does not know how to interpret our mini-awakenings. I don't snore and I get good O2. So what is it? My sense is that we just don't have the right diagnostic tools sensitive enough to understand and treat yet.

anyone have insights?

tearose

[deucykub]

Hi, tearose:

I completely forgot to post about the sleeping issues. I haven't been formally tested but have had a lot of sleep issues since developing fibromyalgia in 1992. My fibro specialist at the University of Florida prescribed a muscle relaxer to help me with my sleep. We tried Xanaflex first - a very interesting, hallucinogenic ride. After that, um, flight?, he put me on good old generic Flexeril, 10 mgs a night. It helps me immensely! If I miss a dose, my sleep-related pain returns. Perhaps something simple like this might be enough to relax your body and keep it from awakening during sleep.

It might not be related at all, but thought it might be worth mentioning!

I hope you find restorative sleep soon.

Deucykub

[Roselover]

Sleep seems to be an issue for many of us!

I heard from Vanderbilt this week that they have a sleep study underway. I hope to get more info about it this week and will let you all know what they're looking at and doing wiith it.

I read an article recently about sleep in a Fibromyalgia journal. They quoted a doctor at OHSU (Oregon Health Sciences University) where they are doing some of the top research in Fibromyalgia. She has an a amazing regimine of meds that she prescribes. She has the patient alternate them.

On that premise, I've been trying to find three different sleep meds to help so I can rotate them. Ambien has been good, but as many here have found, it is working less and less. Clonazepam has been great, but I don't want to take a benzo everynight. So the challenge has been to find a third med. Right now I'm trying a combo of Trazadone and Unisom....but it leaves me very very groggy in the morning....

My PCP wants to send me for a sleep study because she feels over her head in trying to prescribe these meds. But I've been afraid that, though the sleep centers are good, they are not familiar with these autonomic causes of sleep disturbance. But I may have to do it anyway.

So as soon as I know anything more about what Vanderbilt is studying, and doing within their study, I'll let you all know.

ON ANOTHER NOTE:

Tearose.... I remember all the compression you use... and I have a seat cane... but could you tell me more about what you called your "formula for electrolyte supplementation and protein supplements"? I am really struggling with nutrition and would love to hear what you're doing in this area. I think I saw in another post (I'm going to go look for it) that someone orders an electrolite mix. I drink a lot of gatorade... but I am sick of the sugar. Thanks!

~Melanie

[Guest tearose]

Buddyleeswife...after re-reading your post I wonder...are you saying that your husband is on a CPAP without having shown snoring or sleep apnea? This is worth me following up because if good sleep is only a CPAP machine away...I'm on it!!!

Did you have to beg for this treatment or was the article enough?

I am going to get the full paper from the library if I can. Do you have the full pubmed paper?

thank you soooo much!!!

respectfully, tearose

Your note crossed mine roselover so this is for you....

I hesitate taking any sleep meds cause I feel so out of it and wonder if I would stop breathing. I know I get brady during night and I don't like the way tylenol slows my breathing! I hope Vandy takes a good look at this and I look forward to what they come up with. I have done two sleep studies now and the mini-arousals are always there. I think the lead from buddyleeswife may have some hope. I will follow up with her on this and let you know what I learn. Do let me/us know what you learn from Vandy. Are they focusing on sleep problems in ANS POTS people in particular?

As for electrolytes...whenever I am feeling lightheaded or like I may have early signs of getting dehydrated, I reach for one or two packets of electrolyte mix and dump them into 6-8 oz of cold water and start sipping. These are called Kayolectrolyte or Liquilyte. Get them in the pharmacy in the pedilayte area. They are small balanced levels of electrolytes meant for children who are dehydrated. They work super in adults because the levels are perfect for a quick electrolyte boost when you don't want to experience water intoxication and need to hydrate fast. I can't tolerate the sweetness in gatorade!! It makes me want to gag!!! As for the protein., since I have periodic spells of gastroparesis, I had started to instinctively use a protein shake mix to get adequate nutrition.

The "whey-protein" mix is from the health food store. I was a matter of high protein and a good balance of sodium and other nutrients. I think it comes down to a balance of taste, nutrition and good digestion.

I can give you specific names if you want more info.

hope this helps...

tearose

[Sunfish]

hi tea -

as you know i've been MIA so largely missed your mayo trip, but knew you were headed that way and am so glad that it was so helpful in so many ways. and i certainly wish you all the best in your quest for the perfect job for both your mind/intellect & body.

in regard to the sleep studies going on at vandy, yes there is research being initiated that is specific to ANS disorders. they contacted me last spring/summer actually (as a former patient) regarding my willingness to fill out extensive surveys/ questionnaires on sleep issues for them which i did. i actually had a rather lengthy phone conversation with dr. raj (one of the vandy ANS docs) this summer. at that point they were doing "written" research with hopes of initiating actual clinical studies in the near future; perhaps that is where they are now. they were interested in my situation as i had actually lready had an abnormal sleep study (have been diagnosed with & treated for sleep apnea); thus they could actually look at my study results. they weren't aware of this though when they contacted me b/c my sleep testing/diagnosis was after my stay at vandy.

but anyway....my situation is now too abnormal to fit any of their protocols for sleep or anything else, but my conversation with dr. raj was very interesting and i can certainly attest to the fact that vandy is pursuing research in the realm of sleep issues & ANS disorders.

hope this helps,

melissa

[Eli6596]

Tearose,

Nearly four years ago, I moved to another state to practice neurology. I stopped taking call. I stopped all hospital work. I only perform outpatient work. For a physician, that is a HUGE amount of work to give up. I make less than half of the money that I would normally make but my health is soooo much more important than money. I did not feel that I could safely take call anymore. Call involved working weekends and driving into the hospital at anytime day or night (3am for example and still work the next day). It disrupted my sleep and was a total nightmare in combinations with POTS.

I was in a private practice with 4 other neurologists 4 years ago. They said that I broke my contract because I could not perform all of my job functions anymore. They did not care that the reason was medical illness. A few of them made fun of me when I would lie down on a couch between seeing patients. They would roll their eyes. They would tell me what a hardship my inability to perform my usual functions was to THEM.

I am SO happy that they eventually told me to leave. They gave me 6 months to find another job but no severance pay. Getting out of that toxic environment was one of the best things I ever did!

The biggest thing is to find an employer who accepts your illness and VALUES what you CAN do. For me, everything else fell into place. I do work part-time. Part-time as a physician is like a fulltime job in most other circles though. I work 9am to 5 or 6pm usually. I see a new patient in one hour instead of 45 minutes. I see a followup patient in 30 or 20 minutes instead of 15 minutes so that I am not rushed and stressed. I am very lucky that tons of medication allows me to do this despite what Dr. Low calls a severe case of POTS. Working the same schedule everyday is helpful. I make sure that I do not skip meals. I have a recliner that I can lie down in when I have a bad day. From working at my previous job with POTS, I knew what I could do, and hunted for a job that would allow that. When you start working if you are not sure what you are capable of, it might be better to underestimate what you can do when discussing your responsibilities, rather than overestimate. If you do more than they expect, your employer will be happy. If you do less than expected they will be dissatisfied.

If I have to do something at work or home that I know will task my energy, I schedule one day of vacation afterwards to recover. It is better to take scheduled vacation than an unscheduled sick day.

I also watch carefully how much I do outside of work. I lie in bed after work at night, and on the weekends to have energy for a work week. I have no social life whatsoever. It would take too much energy. I say no often when asked to do optional things at my childrens' schools. I find that people at my kids' schools don't really understand that I cannot do everything that they ask. I am learning that I cannot waste my energy on trying to convince them that I am ill. My husband stays at home with the kids (11 and 5 years) which helps a lot. I let him do the laundry. When I grocery shop, I sometimes use a scooter and ask my 11 year old to push the big cart in which to fit the groceries. I just learned of a grocery in town that will deliver groceries. I cannot clean the house without having a huge relapse. I feel guilty to admit it but I do pay someone to clean the house once a month. I look at my energy level in a planned, scientific way. I try to conserve my energy by not wasting it on unimportant things (cleaning, getting upset) so that I can have it for important things (work, children).

Well, the above are my tricks to working. Hope this helps you. The biggest trick has been to find a good combination of pills, and lots of them!!! When I went off my pills for the tilt table test at Mayo I passed out in less than a minute. I know that I would be bedbound without the all the pills. I thank God for what I can do. I know that things could be a lot worse.

I am always interested in learning new ideas from others of how to navigate the world with POTS. I certainly don't have everything figured out. I struggle everyday. I am pushing myself to my limits. ONe little extra activity (going to my daughter's volleyball game on a weeknight) can push me over the edge.

Karyn

[BuddyLeesWife]

Tearose,

My husband was snoring, especially when he would sleep on his back but most the time I was just able to nudge (elbow) him in the back to get him to roll on his side and stop. We pursued the sleep study because even though he appeared to sleep well and enough he continued to be extremely fatigued. He had about 110 apneas, split between apneas and less severe hypoapneas and 165 "muscle twitches" during the 7 hour test.

He noticed a lessening of fatigue after about a week of CPAP use but we began to see real improvements in his other symptoms after a few months use. The drs said that many times CPAP use would resolve the muscle twitches, otherwise they would try different medications. We can only assume that the CPAP has in fact reduced the muscle twitches - I don't think insurance would cover another sleep study to prove if that is really the case.

Regarding the article - timing is everything, I found it yesterday morning, minutes before reading your post and I just had to reply. I really don't know for certain that the CPAP therapy is resonsible for his improvement but he has been struggling for about 8 years and trying different medications and this has been a far more significant improvement than anything we have experienced thus far.