Clb75

I've had severe pots for about 4 years now, and have been housebound this whole time. Dizziness is my worst symptom, I don't have much upright time before it starts and I have to lay back down. It interrupts everything and I'm unable to drive because of it too. If I do leave the house I try to plan as much as possible. I'm the opposite of a lot of people in that I'm best in the mornings but fade and get worse as the day goes on. So I plan activities or doc appointments in the mornings. I have enough time in between to lay down and rest, conserve energy and not feel dizzy if I have to do something else after. If I'm going to a new place, like a doc's office, I call ahead and see how far is the walk from the lot to the office, where are the bathrooms and what is the seating like. I can't sit upright in a chair for very long because of the dizziness so knowing what type of seating they have is important. 

I've also found trying to find a new way of doing old things has been helpful.

I have a young child and like you said, I can't go anywhere or be very active with her. Instead I focus on the things I can do, which are passive things while laying on the couch such as reading, coloring, puzzles etc. Driving has been a huge challenge so I hired a caregiver who drives me to appointments, helps with errands etc. If she's not available I've even taken uber when in a bind.

as far as pushing through symptoms, for me it's a fine line between doing enough so you're not worse but not too much so that you're in bed the next day or two recuperating. Exercising on a recumbent bike helps me a lot, if I don't do it then I'm dizzy immediately when upright. I started doing some treadmill work. It's very slow, but I'm now up to 30 minutes one day a week. If I do it more, I end up in bed for the next day. But, the fact I'm able to do it at all is something I never thought would be possible so I'll take it. 

Hopefully you can find something to help manage your symptoms a little better.

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Will you continue with 2kg for each infusion? They had me on 2kg for my first infusion where you get it  over 5 days. The next one and every one since I'm on 1kg for only one day a month. It works to keep the CIDP from progressing, but the numbness has never gone away totally. I notice some improvements after my infusion then I can feel it start to wear off and the numbness increases a bit. 

Are you tolerating it ok? Something that was helpful for me was to drink about 6 glasses of water a day 2 days before the infusion, as much as you can during the infusion and into the next day. You may already be doing a lot of fluids if you have pots. I found this helps a lot with the headaches. Also, keeping the infusion rate slow can help too. I'm at 120, it takes all day but if I go over it causes problems! Hope it helps you.

This is very interesting, thanks for posting the link. I have CIDP, which causes large and small fiber damage. I noticed blood pooling in my feet after I first became sick, and my doctors kept telling me it's not related to neuropathy. I became sick with POTS a few years later, and was told by my neuro that autonomic issues are not common with CIDP, though my cardio said there is a subset of POTS  called neuropathic pots. Small fiber damage to the nerves that are connected to the blood vessels makes sense. 

I've been on ivig for almost 5 years. I've always maintained that it did nothing to prevent the onset of pots nor has it done anything to help improve my symptoms now that I have it. However, I am on only 1 kg/g per body weight. The people above were treated with 2kg. I wonder if that would make a difference in pots symptoms or at least the blood pooling? Very interesting to think about!

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I know, I couldn't believe it either! I bought it from Amazon, not sure if it's in the regular stores just yet.

I try to combine higher sodium foods in different combinations to add on the sodium. I try to eat healthy too because of my other autoimmune issues, lots of fruits and veggies, so I know it's difficult to get a lot of sodium that way. Some of my go to foods are: 

cereals, bread, tortillas

cheese, pickles

tomato: salsa or marinara sauce

canned foods, like garbanzo or black beans; soups

deli meat or gardenburgers

sauces like Asian style pad Thai or soy sauce, poppy seed vinaigrette 

So I will do something like a stir fry with fresh veggies and a sauce, or black beans,tortillas, cheese and salsa. A turkey sandwich with the bread, meat, cheese and pickles adds up to almost 1000mg of sodium. Packaged foods and frozen foods also have a lot of sodium. I also just found organic Gatorade which I'm pretty excited about. It has the sodium but cuts out all of the food dyes etc. 

I went to Vanderbilt and had a great experience there. The Autonomic clinic will only see you for a onetime consultation to get a diagnosis, and won't follow you for regular day to day care unfortunately. If you're looking for a second opinion on treatment options, it may be helpful but you would still need a local doctor to carry out the recommendations.

They also have a balance disorders clinic where they do testing for inner ear troubles, dizziness, falls etc. Im not sure if they follow you for care or send the recommendations to the referring doctor. 

There seems to be a lot of different causes of POTS, but I'm not sure about medication withdrawal. What does your doctor think? 

Hello,

I've never been on Norvasc so can't really speak to that, but I've been on the medicine merry go round trying to get symptoms and side effects under control. I always think of that whack a mole game at a carnival where you get one down, then another pops up. My BP is very labile...without florinef I'm 90/60 but with it it can go up to 150/90 then even higher like 180 or so if I'm under a little stress. If I drop the dose, I start passing out again. 

Testing can't hurt to rule out other causes. Can you get a second opinion from another cardiologist? 

Honeypots, I'm not sure if they see teenagers or not. They have a webpage with a lot of info, maybe it's listed there somewhere.

I'd be really hesitant about the epinephrine, especially since they're not monitoring your vitals.  I've never had a lip biopsy, but I was under local anesthesia when I had my port put in a few years ago. They used topical lidocaine which was ok because it didn't go directly into the bloodstream. They told me the epi was mixed in with the lidocaine. I also avoid the anesthesia with epi in it at the dentist. Maybe you can talk with the ENT to see if they have an alternative anesthesia without the epi? I'm sure they've had others who can't tolerate it so hopefully they'll have something else on hand. 

Also, Vanderbilt is just a one time visit to do testing and get a diagnosis. They give you a treatment plan from there for your regular doctor to implement. So you wouldn't have to travel to Nashville every time you need to see a doctor. I agree that a visit there would be very helpful, they are top notch specialists when it comes to diagnosing  autonomic disorders. I found it's helpful to have an official diagnosis from them so you have medical records to show other docs who are less familiar with autonomic issues. 

I was diagnosed with NCS and Pots, and fainted a lot at the beginning. Once I started taking Florinef and increasing fluids and salt, it got better. I tried to lower my  florinef dose several months ago and passed out again, so I know it's definitely helping. Hopefully you'll find something that works. 

Before you make an appointment with someone, you can call their office and see if they work with autonomic disorders. You may also want to try some of the doctors affiliated with the major hospital system there. Good luck, I hope you find someone.

What kind of cardiologist did you see? An electrophysiologist is the type that typically specializes in POTS, or you could try a neurologist that deals with autonomic disorders. If Nashville is too far, could you make it to Atlanta?  There may be more doctors there to work with.  

I went to Vandy and had a great experience. I'm not sure where in GA you are, but it's about a 3 1/2 -4 hour drive to Nashville from Atlanta. The only thing is that they don't schedule you with different specialists while there like they would at Mayo. Given all the different things you have going on, I wonder if Mayo might be a better fit. I don't know much about EDS but a lot of your symptoms sound like what people with EDS describe. POTS is very common with EDS. Also, just another thought, have you looked into Sjögren's syndrome when you were tested for autoimmune diseases? The lack of tears/dry eyes made me think of that. 

I know it's frustrating at the beginning when you know something is wrong but you're not getting answers. Something I've learned from being sick is that you really have to advocate for yourself and keep pushing for answers. Hang in there, and hopefully you'll find some answers soon!

A lot of your symptoms seem consistent with pots. It's very common for people to be misdiagnosed as having anxiety when it's really dysautonomia. The day I went to the ER for my "pots attack", they said it was a panic attack until the ekg and some labs came back pointing to a cardiac issue. They referred me to a cardiologist fortunately.

One of the main differences between anxiety and pots is that it's positional. Pots symptoms get better when lying down and worse when upright while anxiety will remain consistent despite the position you're in. Also, as you pointed out, pots patients may have physical symptoms that mimic anxiety but will lack the cognitive piece of it. They will not have the fears, worries and ruminations that an anxious person will have. Plus, an anxious person's tone of voice, facial expression etc will usually be loud, pressured and worried at the same time they are having the physical symptoms.

Beta blockers can be tough! I went through three before I landed on one I felt was helping. You may want to call your doctor to see if you should hold the propanolol for a day or two before your appointment so it won't mask any symptoms or affect any testing they may do. Also, it may be helpful to keep track of your vitals sitting and standing a week prior to your appointment, and show it to your doctor as evidence that things change when you're upright. Hope it goes well!

Hello, welcome to the site. Hopefully you'll find some information here that can be helpful to you. I'm sorry you weren't able to find any specific names of doctors. Generally cardiologists that specialize in electrophysiology or neurologists that treat autonomic disorders would be the best place to start. Do you have a primary care doctor? Maybe they can help refer you to a specialist as well. 

Hello,

How long are you planning to be in the States? My guess is that most specialists will be booked far in advance, making it hard to get an appointment while here. You could try calling the office before you leave to see if there are any cancellations or if they can work you in, considering you are from overseas. 

Hi Nan,

I know it's really frustrating when people don't understand our symptoms or how impacts you on a daily basis. Have you tried presenting factual information like research articles, info from doctors, books on dysautonomia etc? Maybe if it came from an objective source it might sink in a little better. The Vanderbilt autonomic clinic's website has some good info, and I once read a book I ordered from Amazon that gave a great overview of pots and all of the symptoms. 

Also, learning how to do things differently to pace yourself through the day can be helpful too. I have a young child and cooking is out of the question. I started making her meals in a crock pot so I wouldn't have to cook much. I never used one prior to being sick but it has really helped. I also have a routine I follow to get what little housework I can do get done. If I do too much it makes me worse so by breaking it into smaller tasks and limiting how much I do each day it really helps. You mentioned confusion...I've had brain fog moments where I've left clothes in the washing machine for three days or forget to turn off appliances or even entire conversations! I write everything on a post it, set medication and other reminders on my cell phone, and have a special spot in the kitchen where I put bills, important papers etc, so I can see them immediately and not forget to take care of them. 

In my case, they were able to work me in quickly because I was already a patient in a different department. The testing was helpful as were the recommendations on meds, fluids, exercise and high sodium foods. I know that the research side is different than going as a regular patient. You will likely get in much quicker but I think they only do whatever treatment the research calls for rather than getting a full autonomic work up.