janiedelite

You've probably already done this, but can you take some antinausea meds (sometimes benadryl even works for me) and try drinking some broth or other salty liquids? It sounds like you might be dehydrated.

Good thread! For me, one of my worst triggers for POTS flares is emotional stress, especially anxiety. Last year, when my POTS symptoms kept worsening and I went to over 40 Drs appointments in one year, I was doing my best to stay calm but I couldn't help but be anxious somewhat over my increasingly disabling symptoms! I went to Mayo a couple months ago, and implementing all their suggestions has helped, but I think it was also hugely helpful to finally be evaluated by docs who were able to tell me I wasn't dying, they knew what I had, and how to help me. Since I've been back from Mayo, my POTS symptoms are not as debilitating because I finally was able to get peace of mind and stop the adrenaline-producing cycle!

I've been under some stress lately with my mom's worsening health, and my anxiety over her health triggers worse symptoms than even over-exercising for me. And unfortunately, since our disorder involves the sympathetic nervous system, my body will overreact to normal anxiety triggers and send me into a vicious cycle of worse POTS, anxiety, etc. My lying norepinephrine (adrenaline) level is 250 and standing is 1089 and that's just doing daily activity without feeling anxious! What I'm trying to say is that I am normally a very calm person, but having POTS makes staying calm/peaceful all the more challenging. Just like we have to be more aware of cues from our bodies when they are stressed, we have to be more aware of our state of mind too.

My PCP recently suggested I try some meditation or yoga. She said she recommends it for patients who have essential hypertension that no meds can treat, just to try to calm their sympathetic nervous system. First, I was a little offended thinking she was telling me my problems were mostly in my head, but she reassured me that practicing relaxation would help reduce my abnormal physical responses to normal stress. I also practice daily prayer and scripture reading. Whatever I can do to maintain peace of mind.

Don't worry... be happy! (it's my new POTS treatment)

Janie

I'm sorry, Nina! I remember giving morphine to patients and it commonly causes a histamine release even in folks who aren't "allergic." It would give them mild hives and vasodilate them too. Any drug that's derived from morphine can have the same effect (oxycodone, hydrocodone, etc.). But I would have thought that with that much benadryl (holy cow!) you wouldn't have this problem!

If I take more than 1/2 a vicodin for nighttime pain, I'll lie awake for 3-4 hours. My mom has this side effect too, and she has neuropathy like me. Wierd because most people are snowed on opioids. I either have to decide if I want to be awake because of pain or awake because of drugs.

I hope you find a solution!

Janie

I'm so sorry... our furry friends are so important and comforting to us.

Thank you, Maxine. I was kind of hoping you would reply to this post, although I didn't expect it because I know you've been through so much lately. But you can personally relate to what my family is going through.

I don't know about you, but it seems like negative emotional stress takes much more of a toll on my body than even physiscal stress. I was pretty stressed on Tuesday and Wednesday this week, processing what we learned at the doc's appt. Yesterday I was tired, but today I'm wiped. I went for a short trip to the store and almost had to leave because of nausea and tremors. My hubby understands, though, and is very sympathetic. And I'm thankful I don't have to work. In the past, emotional stress sometimes put me in bed for weeks and my neuropathy pain worsens too. I hope that doesn't happen, and I wish I had more to give to my mom in the form of energy. Yesterday I went to her house (just a mile down the road) and we watched The Apprentice together. That was fun.

I'll take your advice and stay within my limits, especially during days like this when I'm already drained. My mom can still drive herself places most days, cook and clean, so I don't do a whole lot for her except go to appointments with her and give medical advice sometimes or make phonecalls for her. Stress makes her symptoms much worse also, so we are a pair!

Thank you so much for sharing your experience and advice. It is greatly appreciated.

Take care, Janie

Sorry, I don't have advice about cutting back your hours, but I wanted to suggest you have a long-term disability policy in place! Your employer might already pay for it in your benefits package, but if not then you should sign up asap! With my policy, they looked back at my work hours for the 6 months prior to the date I quit work and decided that for the last 3 months I worked I called out sick so much or left early they were able to reduce the waiting period for payment by that 3 months! Also, make sure you sign up for the maximum benefit available (many plans just pay 50% of your pre-disability income, but you can upgrade to 66% for very little out-of-pocket.)

I'm not encouraging you to quit your job or anything, but you never know what the future holds especially with dysautonomia. I'm sorry you're having to make these decisions!

Take care, Janie

You can have your doctor give you a "poor man's tilt test" in his office. Just lay flat quietly for a few minutes and have him take your BP and pulse. Then stand and have him take your BP and pulse every couple minutes. If your heartrate increases by 30 beats or more on standing, you have POTS. If your BP numbers drop more than 10-20 points, you probably have orthostatic hypotension. When I my doc told me I probably had autonomic dysfunction, I bought an electric BP cuff at Walmart and did this myself at home and brought the numbers in to her. I did it at the same time for 3 days in a row so she could see how consistently abnormal my numbers were.

I'm relying to this post a little late, but as I read through all the other replies I realized I can relate. I took the CFS quiz someone posted and easily could have CFS. My first POTS day occurred in 10/06 while I was working as a nurse. I remember feeling so acutely exhausted and could hardly think. I even told the charge nurse that if I didn't start feeling better, I'd need to go home (and I never went home early!). Then a few hours later, I was doing my routine nursing duties and the room went gray and I got all clammy. I grabbed a chair and put myself on a heart monitor and the rate was 160! That began the unending series of tests...

I've had constant mild fatigue since then, but last summer when my small fiber neuropathy pain really kicked in, I would have these wierd distinct episodes of overwhelming fatigue. I noticed that I'd have a mild fever during these times sometimes too. First the episodes lasted a few hours, and I'd be fine for a week. Then it lasted a day, and I'd be fine a few days. Then it lasted a few days with less time in between feeling better. Now, a year later, I have this fatigue every day with a few hours every month or two of increased energy.

I described these episodes to my local neurologist and he didn't know what to make of it. My PCP says it's just related to my autonomic dysfunction. I think I probably have an autoimmune component to my POTS, which has probably caused my small fiber neuropathy, even though my ANA and ACHR are negative so far. But I did go on a 12-day course of prednisone last summer and didn't notice any difference in my symptoms.

I do meet all the criteria for fibromyalgia also, but I've had such a hard time getting a doctor to diagnose my POTS/neuropathy that I haven't mentioned this to my docs. Same with CFS. It just seems that the specialists I saw were sometimes so sceptical of my symptoms already, and then if I had those diagnoses on my chart I know that some of them would just further discount the validity of my illness. I'm a nurse, and I know that CFS and fibromyalgia are REAL and debilitating, but I've also met docs who say they don't believe any diagnosis that ends with "Syndrome." I don't see these docs anymore, of course. Dr. Fealey at Mayo told me it sounded like I had fibro and CFS, but he understood why I avoided having those labels place on me until we discovered the root of my illness (in my case, small fiber neuropathy, probably post-viral).

I started seeing a therapist last summer, mostly to help coping with the onslaught of symptoms and the toll they were taking on my life. We came to the conclusion that I didn't need antidepressants or meds, but emotional support through this illness. Since I returned from Mayo with a diagnosis and a plan, I saw her one last time and she commended me on my positive attitude throughout this ordeal, even though I shed many tears in and out of her office over this disease.

Shimoda has a good point. My mom has carcinoid syndrome which affects males 3:1 over females, and she participates in an online and local support group. There are maybe 25% males at these groups. I think women are more willing to reach out.

Don't feel stupid. My hubby was on Tramadol 50mg twice a day after a car accident and he tried to wean over a month but could hardly function, and he doesn't have POTS! He went back to the prescribing doc who put him on Nortryptyline and felt better within just a few days. He was weaned off the nortryptyline a couple months later. Good luck!

How do I find out what Kind of POTS I have?

Hi Michele, I went to the "physicians list" area on the DINET homepage and these are the recommended docs in New York:

New York

Julian M. Stewart

Dept. of Pediatrics

Munger Pavilion

New York Medical College

Valhalla, NY 10595

914-594-4370

Treats Children

Information on Dr. Stewart's current research study is available on our website at: http://www.dinet.org/studies.htm

Svetlana Blitshteyn, MD

6507 Transit Road Unit C

East Amherst, NY 14051

716-531-4598

Dr. Blitshteyn specializes in autonomic disorders, headache medicine and general neurology. She is highly recommended.

Mount Sinai School of Medicine

Autonomic Disorders Research and Treatment Program

Department of Neurology, Box 1052

Mount Sinai Medical Center

One Gustave L. Levy Place

New York, NY 10029

212-241-7315

Autonomic Laboratory

Treats adults

Dr. Kiril Kiprovski

Department of Neurosciences

Hospital for Joint Diseases

301 E. 17th Street

New York, NY 10003

212-598-2375

POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Orthostatic Hypotension

Autonomic Laboratory

Treats adults

Dr. Ludmilla Bronfin

650 First Avenue., 7th Floor

New York, New York 10016

212-532-6298

POTS & NCS

Treats adults

Dr. Max Hilz

New York University

Department of Neurology

550 First Ave.

New York, NY 10016

212-686-7500 ext. 7755

POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Familial Dysautonomia, Diabetic Autonomic Neuropathy

Autonomic Laboratory

Will treat children

Lindsey Lee Lair, MD

35 East 35 St. Suite 202

New York, NY 10016

917-991-1992

Comments:

Dr. Lindsey Lee Lair completed her fellowship in autonomic and peripheral nervous system disorders.

The Syncope Center at Columbia Presbyterian Medical Center

Harkness Pavilion, Room 342

180 Fort Washington Avenue

New York, NY 10032

212-305-9940

Treats adults

Louis H. Weimer

Neurological Institute of New York

710 W. 168th Street

New York, NY 10032

212-305-1330

Orthostatic Intolerance (POTS), PAF/ Secondary Autonomic Failure, Multiple System Atrophy

Autonomic Laboratory

Treats adults

Dr. Weimer primarily performs testing. The Neurological Institute of New York has a large movement disorders group experienced with MSA, and there is also a syncope center that treats NCS (See: The Syncope Center at Columbia Presbyterian Medical Center). POTS/OI patients are considered on a case to case basis.

You are very lucky to have all these docs to choose from! There is no one in my state or within 500 miles of me on the list. I went to Mayo, Rochester and it was worth it. I found out I have small fiber neuropathy, probably triggered when I had mono in '06, which caused my POTS. I saw over 9 specialists after my POTS worsened til I found a neurologist who was willing to send me to Mayo. Sometimes you have to see multiple docs until you find one who looks at you and says "Oh I've seen this before!" Then, they should be able to figure out what triggered your POTS and come up with a treatment plan (maybe not a cure, but will improve your quality of life). Keep trying!

Thank you, Carinara.

This forum has been my lifeline over the last year, since my POTS symptoms have become debilitating. Since coming back from Mayo a couple months ago, I strictly followed the doc's suggestion and drink 3-4 liters a day, take in 4+ gms sodium, wear waist-high compression, sleep with head of bed up, exercise whenever able, avoid stress, etc. Now I can clean the house, cook, and for the first time in over 2 years I sat for 2 hours in a salon and got highlights in my hair! I know it's such a material thing, but I haven't even felt well enough to get a hair cut and grew my hair out long so I wouldn't have to maintain it. I didn't have the energy to spend time fixing my hair, and I just laid down all day anyway. But my hubby loves my new look, and even if I still spend most of my time at home I feel a little more presentable.

My mom has carcinoid syndrome (she's had it for 22 years and has tumors in her liver, lung, and maybe her colon and has had 2 surgeries to remove other tumors). She's on 75mg of octreotide a month through a pump. Just like POTS, it is terribly hard to find a doc who really knows about carcinoid syndrome. But we have "trained" a local oncologist in her disease and once a year we fly from Oregon to New Orleans to see another oncologist who has a clinic devoted to carcinoid patients. Our local doc is willing to take direction from him.

Until the last month, I didn't think I'd be well enough to go with her to her appointment in New Orleans, but thankfully I went and did fine! Yay! Wearing compression hose in nearly 100% humidity wasn't too fun, and the heat took its toll, but my seat cane helped a ton and I took it everywhere. I'm glad that I went because she has about as much brain fog as I do (so together we might make a whole brain ). My dad went too but he can't hear much, and he gets stressed out talking about her illness much. I'm glad I can go and help her remember what the doc says, and can help advocate for her.

Unfortunately, my mom is just too thin. We spent about an hour with the dietician, who also specializes in carcinoid syndrome, and got some good tips but even she admits that she will have to look for more treatment options for my mom. There is an area on her CT scan that looks like an intusucception caused by a new tumor, so now she has to work within her insurance limits and get a colonoscopy (and have an IV octreotide drip during the procedure, so it may need to be done inpatient), and maybe more surgery... Other than that, the rest of her tumors are very stable.

I'm thankful for every day I have with my mom. And I know that someday she will be in heaven and will eat everything and have no pain! It's hard because I am an RN, and I second-guess myself wondering what else we should be doing. But POTS has certainly taught me my limits, emotionally and physically.

Carcinoid syndrome is the slowest-growing cancer there is, which gives most of these patients a longer life expectancy but not always a great quality of life.

Carcinoid syndrome symptoms are flushing (especially of the face), diarrhea, and many of the symptoms are similar to POTS (OI, nausea, abdoomina pain, etc). The average time of misdiagnosis for carcinoid patients is 7-8 years. For my mom it was 9 years and by the time they figured out what she had she had multiple lymph metastases and liver mets too. If any of your symptoms are suggestive of carcinoid syndrome, get a urine 5-HIAA, and a Chromogranin A. These are two lab values that are fairly standard. Other diagnosics would be chest, abdominal and pelvic CT's with and without contrast, gastrin level, pancreastatin, serotonin, and neurokinin-A. Spread the word! Any other questions: www.carcinoid.org

I took my seat cane with me this week on a flight across country. It went through security fine! I used a wheelchair most of the time in the airport, and my dad sat on my cane while we were waiting for flights. He's close to the weight limit (and I have the 3-legged cane) and it held up fine. Do remember to sit facing the handle, though.

Suzy, I totally understand how frustrating it is to hardly be able to do anything except lay down, and when you're laying down all you see is a messy house. Laundry is especially tough! But I got the coolest present last year for my birthday... a rolling laundry cart! It's just my hubby and I, and he knows how hard it is for me to pick stuff up off the floor. Most of his dirty stuff actually does end up in the cart! We have hardwood floors, so I just lean on my cart and roll away! Now if I could just figure out a way to clean those cobwebs off the ceiling......

Janie

That's great, Ernie! Keep us posted.

That's great! You've been so sick and I'm glad you have some hope. I hope you are able to start getting stronger. It has helped my symptoms somewhat to work on getting my lower body stronger. I hope the meds help your heartrate and your pain! Lyrica helped my pain tons, I just wish it didn't make me so constipated. But my mom takes it without any problems except being "fuzzy headed." Would we know the difference though with all our brain fog???

HI Maxine,

I don't have joint hypermobility, and Mayo said small fiber neuropathy was the cause of my POTS. I've never had any other joint injury (other than TMJ from another accident), so my surgeon is certain the accident caused the hip damage.

I do have an attorney to try to get SSDI, but she was assigned to me by my long-term disability insurer. That's a whole other ball of wax... In the meantime, my LTD is still paying! They started paying because my hip injury kept me from my nursing job, but POTS and small fiber neuropathy kicked in in full gear last year and now they base my disability on POTS. I've read your posts on getting SSDI, and I appreciate all the info you shared! I've followed your suggestions so far... we don't even have a hearing date set yet and Oregon is the second-most backlogged state for SSDI hearings. If I have to fight anyone for disability payments, it will be my LTD insurer although they've been okay so far.

It's tough because the lady who hit us was 87 at the time of the accident. She owns a low-end house, and has a few retirement funds. We would have to get a pretty high ruling against her in order to make it worthwhile, which would be hard because it would be a "healthy-looking" 35-year-old suing a now 90-year-old who has Parkinson's. And my hip is nearly healed and my surgeon says I won't develop arthritis. I don't know how high of a ruling we'd get, also because the trial would be held in a more rural county where rulings haven't been very high in the past. So I do agree with my attorney that we should just pursue my underinsured policy.

I'm sorry for how your mom's cancer was handled. Horrible! I hope there wasn't any cover-up, for their sakes.

Thanks for sharing your experience and SSDI advice! Janie

The Mayo doc said that I have it. It's most noticeable on my palms, but if I lift my feet up you can see it on the soles too. If I'm doing really poorly then my torso gets blotchy too.

Mostly heat/activity/stress make it worse, but I've also noticed caffeine will make my skin burn more.

There is no way NOT to be anxious about this legal situation. My guess is they will about 10 days before trial start offering settlement. Then your attorney will earn his/her fee. I worked for a personal injury attorney as a patient advocate. so if you do go to trial, make sure your rest time inclused the reason you are there. Hip, Back Leg..........It all has to come back to that. You could also get a letter from your orthopedist that you need periodic rest....whatever..Godspeed

Miriam

Thanks, Miriam. Sure enough, a few days before we were going to a settlement conference my attorney called and said they'd offered something (not much) and that it would be most beneficial for me to take what they offered and go after my underinsured insurance policy, who hasn't offered anything yet. He said it would be easier that way. That's fine with me! We're very relieved not to have to go to court. Either way, I still have all my records. I could definitely bring a note from my PCP who will back up my POTS limitations and make things more bearable.

Thanks guys, Janie

Prior to POTS, I got frequent headaches (just took ibuprofen and laid down), but no migraines. But in the last year, I've had 3 migraine "episodes." I call them episodes because they build over a few hours but take days to recover from. The head pain is so horrible I think I'm having a stroke or something, I get nauseated and start vomitting, and I get these wierd shakes that start in my lower legs and work their way up through my body. Totally uncontrollable.

Now, my mom has carcinoid syndrome (but she also has small fiber neuropathy like me). I've had to go to the ER with her for a horrible headache before her carcinoid symptoms were under better control (now she uses octreotide at a high dose through an insulin pump). The progression of her migraine was just like mine, horrible head pain, nausea/vomitting later on, and shakes that start in her legs and move up.

Nothing really helps these migraines. My mom got morphine but it just made her not able to stand up. I've taken oxycodone but it does nothing. Advil sometimes helps. And by the way, my mom and I both have orthostatic hypertension although hers is under better control now with her meds and mine is under better control with salt, fluids, rest, exercise and compression.

Great poll! The Mayo doc says my POTS was probably triggered when I had mono at the age of 32 in 6/06. I was fatigued after the mono (of course ) but didn't notice POTS symptoms til 10/06 while I was working as a nurse and felt horrible one day then almost passed out. I put myself on a monitor and my heartrate was 160. Went to the ER... yadayadayada...

During 2006 I noticed more fatigue, especially after meals, accompanied by high heartrates. I also developed mild perniosis (frostbite) that winter that lasted 4-6 weeks, even though I spend most of my time indoors. The next year, the fatigue progressively worsened and the perniosis lasted 4 months and caused chilblains, purple toes, blue feet, and no doc could really help me. That winter, my feet also began to burn and get red and itchy at night.

Then in 6/08, the burning feet returned 24/7 and spread to my hands, face and mouth. It now affects my whole body. I've been officially diagnosed at Mayo with small fiber neuropathy, which the doc there says is what caused my POTS. He says it's probably post-viral. However, my mom and brother came down with rare neurological diseases in their 30's, and my mom also has small fiber neuropathy with no known cause. Personally, I think there are genetics involved.

And, I thought that post-viral POTS cases usually has a more sudden onset? Mine has slowly gotten worse. I was able to work for 6-7 months after the first tachycardia episode in 10/06 but have too much fatigue, brain fog and pain to work anymore. I wonder if the trauma of mono 6/06 and then being in a bad car accident 9/06 triggered something in me that caused POTS?

Firewatcher, I really hope you can go! I bought a seat-cane a few months ago and won't travel without it. Even if I'm up to walking the distance, it's like my security blanket in case I have to stop and stand (like in airport security). It's lightweight and also gives me something to lean on if I get tired while walking.

And obviously, stay extra hydrated on those long flights!

Ami, thank you for continuing to let us know how things are going! You poor thing! I'll keep sending you good thoughts and prayers, Janie