Clb75

I have a port, and they use a needle to access it. It’s only one stick but it may still bother you. Plus it requires surgery to get it placed. It may be a solution if you need a lot of blood drawn on a regular basis, but if it’s on an infrequent basis, surgery to place it then again to remove it may be a lot to go through. 

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Welcome, glad you found the site.

I remember you were trying to get to the doctor but had insurance issues. Were you able to go? If not, you really need a diagnosis and good treatment plan. Pots will not likely go away on its own, and it’s possible with the right treatment that some of your symptoms could improve. The ER will not diagnose you with Pots, they are there to treat any life threatening problems. Pots is annoying but not fatal. If you really think you have Pots, you need a tilt table test from an electrophysiologist (cardiologist) or a neurologist who specializes in autonomic disorders.  You can keep track of your heart rate, lying, sitting and standing and record the numbers. This is data to give to the doctor and can help show a pattern of symptoms. 

As far as the health anxiety, it sounds like you’re in a big loop of having symptoms that cause worry, then going to the ER to make sure you’re ok. This is not going to change anything unfortunately. Getting a treatment plan tailored to your symptoms is the only way you will know if any improvement is possible. Even though your symptoms are bothering you, it sounds like you’re able to make it through a day at work which points to a milder case if it is Pots. Hopefully improvements will be possible for you.

Some people benefit from ssri’s...not sure what they prescribed you at the hospital but if it’s an Ssri, that may be helpful too. 

Are you taking any vitamins? An overdose of vitamins can cause skin color changes and confusion. 

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Welcome new members as of 10/23/17. We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic that you’re interested in. 

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I had a doctor tell me that shortness of breath happens because blood is not getting to the upper parts of our bodies, including the brain and lungs. 

I went through the disability process a few years ago. I would definitely stay on top of the lawyer because there is a time limit for appealing after your denial. They can close the case if it’s not done on time. I think it’s a good idea to ask your retired doctor if they would fill out the papers since they saw you last and are most familiar with your case. It will help to have an appointment scheduled with a new doctor because you need to show you are receiving consistent care. 

There are some law firms that specialize in disability cases but operate more like a factory, they get your information, send forms out etc but won’t let you talk to or meet with the actual lawyer. I went with one who met with me in person. He did a quick screening over the phone to see if he thought he could help me, then met with me from there. If you’re not getting calls back, I would keep searching. I wouldn’t try to go through the process without legal help because it’s too complicated. 

It’s a stressful process, I hope you find the support you need.

Nathalie,

I’m not sure if your doctor is familiar with this, but florinef is a different type of steroid than conventional ones. They are classed as a mineralcorticoid instead of a glucocorticoid, and don’t cause many of the side effects seen in traditional long term steroid use. Maybe this would change their mind about needing to wean you off.

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Does your university or public transportation system have a paratransit system for people with disabilities? If so, they may be able to pick you up directly and shuttle you to your classes. In the town I live in, the paratransit will pick you up at your home, school, work etc. as long as it's a certain distance from their regular route. 

I was able to go from 2 pills a a day to one because my BP was getting too high, but once I tried cutting down from one pill to half a pill a day, I started passing out again.    I don't think I could do without it. I forgot how long it takes to build up in your system, I think it's pretty short, like a week or two. I think after a month would be enough time to get an accurate idea of where things are at. If you're that symptomatic once cutting back, hopefully that would be enough for your doctor to recognize you're doing better at a higher dose. 

I have a lot of those symptoms too. It's funny, usually when reading a description about pots, they mainly focus on the tachycardia part and skip over the rest. I always tell people pots is so much more, if it were just the heart rate, the beta blocker keeps it in check, so that's the least of my worries. Dizziness when upright is my worse symptom, but I get all of the others you mentioned too. I never had migraines before I got sick, now I have visual ones, and regular ones too if I eat certain foods. 

I went to Vandy several years ago and had a great experience. They really are experts in this area so they are very thorough. The autonomic clinic website has a list of different conditions that you can click on. It gives a description of the condition, symptoms, treatments etc. I read through it before my appointment and felt better because I could rule out some of the more serious ones based on my symptoms. 

Hi p8d,

I receive a magazine called IG Living, which is devoted to IVIG and all the things that come with it. I just got their current issue and there's an article about transitioning IVIG to Medicare. I have a hard copy, but you can go  to IG living.com and access it online. I thought it might be helpful to you and maybe answer some of your questions.

I've had a few since having pots. I don't remember any issues with odors. The only concern I had really was anesthesia. Like Mountain girl said, I also had the kind without epinephrine. It does wear off quicker than regular anesthesia, so I had to ask for a little more during the procedure to get me through it. 

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Dr. Satish Raj used to be at Vanderbilt but now is at the university of Calgary. Not sure how close that is to where you are but thought I'd mention it in case you're looking for a doctor.

I had to go through several beta blockers before I found one that worked, maybe you could try a different one to see if you feel better. A lot of people also use midodrine and florinef to help raise their BP too. 

I use sea salt because it has more sodium than the table salt I already had at home. I've used pink salt on occasion too. Some say they are healthier because they have more minerals included in the salt  compared to what regular table salt has. 

Welcome to the forum. That's a definite concern, maybe you could call the office and ask? You could also try keeping a log of vitals, symptoms etc over the next month so you have data to present if you're having a good day and your symptoms aren't as severe. 

Yes I'm on Medicare and blue cross blue shield secondary. It covers 80%, then bcbs picks up the rest. I get it at an outpatient infusion center affiliated with a hospital, plus it's an FDA approved treatment for CIDP. I know there are rules about coverage...they cover outpatient but not home infusions, and the ivig has to be an FDA approved treatment for the diagnosis you have. It can be tricky to figure out, you can try calling an infusion center and speak with the billing department to see how they handle things.