Clb75

Jesse, Do you have any more information about this northera and pots study, or any links to the research? Dr. Raj is no longer at Vanderbilt, was he a part of this study or just discussing it? Thanks!

I went about a year and a half ago and saw Dr. Raj, though he has since left and gone to an autonomic clinic in Canada. I had the testing done on one day then went back two days later for the results. I spent about an hour talking about the results and recommendations which was nice because there was plenty of time to talk about my concerns etc. They sent a packet of info before the appointment with instructions like which meds to hold and not to eat before the test. It also explained which tests are done. They gave me a copy of the results to take with me along with a summary of recommendations. Good luck!

Rich, I have CIDP along with POTS and have been getting IVIG for about 3 1/2 years now. In my case, it has helped with the progression of CIDP but the nerve damage that's already there is irreversible. I had an onset on POTS about a year or so after CIDP, so it didn't help prevent the onset of it or with the severity of symptoms. Some tips that have helped me tolerate IVIG is to drink lots of water before. I start two days before the infusion, only water not Gatorade etc., then continue the day of the infusion and the morning after. Keeping the infusion rate low also helps prevent headaches that are a common side effect. My infusion takes about 6 hours but if I speed it up, my head hurts. I also get saline after I'm done with the IVIG. Most places give Benadryl and Tylenol before the infusion starts. I always feel groggy afterwards and have to go home and go to bed for the rest of the day. It may take several infusions before you notice anything. Good luck, I hope it helps.

I called the number on the Northera site to get more information about a month ago. They told me your doctor has to complete their paperwork,then they will work with your insurance to see if or for how much they will approve it for. If not then they have an assistance program to help cover the costs. They ship it to you from their own specialty pharmacy once they have the costs figured out.

Thanks Rich. He was basing this on older studies that showed effectiveness in treating syncope spells and thought it might help level things out with POTS. the same thing happened to me last year when I tried lexapro. I hate being a guinea pig but was hoping something different might help improve things. My BP was running high all last week and now I've had to stop florinef and midodrine all together. I'm going to start back on a lower dose and work my way up again as my BP is starting to fall back down. My whole system has been affected and it's frustrating to have to start all over. I forgot how much worse I felt without those two meds in my system.

Good luck Sarah, I hope you see some improvements!

Thanks for the well wishes:)

Thanks for your replies Rich and Sarah. My doctor said it was used off label more for neurocardiogenic syncope and can bring some improvement so he wanted to try it for pots too and see if it might help. I had my first dose yesterday and ended up in the ER last night with hypertension, even though it's not supposed to elevate your blood pressure. I guess I know the answer now, no more for me.

Has anyone tried this for POTS? I have a severe case per my cardio, and have been housebound for over a year. He found some reports that this has been used with POTS and NCS though it's not a first line therapy. I was curious to hear from others about any experiences or knowledge you may have. Thanks!

I'm sorry this happened to you, unfortunately it's very common for people with rare or undiagnosed illnesses to get this. A lot of people get diagnosed with anxiety before dysautonomia is even considered. Somatic disorders do exist but are rare and hard to diagnose. you have to rule out all physical health conditions and test results and most people have not had a full work up across the board to do that. Somatic disorders tend to have an inconsistent pattern of symptoms compared to someone with a physical basis for their illness, and also wouldn't have abnormal test results. You appear to have several illnesses that can explain your symptoms and I'm guessing you have test or labs that confirm it too. The doctor should have known better. Maybe he was trying to say that the autonomic system also controls mood symptoms like depression and anxiety but it obviously controls other physical functions as well. Serotonin and norepinephrine contribute to depression, anxiety, poor sleep, appetite changes etc. However, if someone is having a panic attack solely based on anxiety, the symptoms will be consistent, and not only appear when upright then go away when lying back down. Salt, compression socks etc also won't alleviate panic attacks. Depression is very common and You are being responsible by trying to get help for yourself. He clearly didn't take the time to fully understand your symptoms and how they are different from the presentation of a true mental health symptom or diagnosis. Hopefully you can find someone else who will listen better and be helpful to you.

I use a brand called gamunex-c and they have a couple of programs. One covers part of the copay as long as you don't get the infusion at an outpatient medical center, which may apply in your case. I can't use that program, but the one I'm on gives you a certificate every four months after one year of infusions, as long as they are billed through private insurance. If you lose coverage you can trade in a certificate for a free infusion. I understand how frustrating insurance is, I had to stop working and carried the insurance for my family too. It's a shame you have to lose your insurance just when you need it most.

I live in Tennessee and was just approved for social security disability. It was definitely a process though. I had a lawyer from the beginning and was told TN has a high denial rate, somewhere around 70%. He helped me fill out the application online and I had copies of all of my medical records to forward on to SS. They contract with the dept. of human services here. They were the ones who denied me at first, saying that I could still stand and walk! The appeal went to the federal level, but I'm not sure where. They approved me but I don't know why or what changed. I do have another autoimmune disease in addition to Pots, so I guess they look at everything. Also, my lawyer had my doctors fill out a functional capacity form detailing my limits and difficulties with day to day tasks so I think that helped too.

I have an autoimmune disorder that causes large fiber neuropathy and have used Ivig for almost three years now. I get numbness and weakness if I don't use it. I definitely notice a difference with it and have done ok so far. I developed Pots after the onset of this first disease so in my case it didn't do anything to prevent the onset of symptoms, nor has it improved any of my Pots symptoms. If your doctor thinks it may be helpful I would give it a try to see if it helps bring any relief. I would check your insurance though because you're right that it's very expensive and it's only approved to treat certain diagnoses. Also if you do it, something that's helped me not get headaches, which are a common side effect, is to drink 6-8 glasses of water, (straight water no gatorade etc) two days before the infusion, during the infusion and even a glass or two the next morning. I also get a bag of saline after the Ivig is done which helps too. Good luck, I hope it helps.

Good luck, hope it all goes well!

Hi Sarah, Yes, I had it placed about two weeks ago. I was nervous about the anesthesia part, but everything went smoothly. I'm still a little sore but doing ok. The surgery itself didn't take that long, I spent more time checking in and getting ready than the actual procedure itself. I had an infusion about a week after it was placed and it worked great. They put a numbing spray on it since I was still sore from the surgery but said I probably wouldn't need it next time. The infusion worked the same as usual and I didn't notice any differences. Everything is working well so far.

I was just denied after my initial application and am working with my lawyer on an appeal. It's very stressful and disappointing but please don't give up just yet. Perhaps you can find a lawyer who is not from a large chain that can give you more personalized attention and help you. Having records and current findings documented can help support your case, and my lawyer had my doctors fill out a functional capacity form to document all of my limitations too. Good luck!

I'm getting a port placed on Thursday. I get regular IVIG infusions and the low blood volume from POTS has made it difficult to find a good vein to stick. My doctor referred me to an interventional radiologist to do the the surgery. They are part of the hospital system where I receive my infusions. Good luck!

There's SNRI's like Effexor that work on serotonin and norepinephrine, and older classes of antidepressants like tricyclics (elavil) and Maoi' s. These are not as clean as ssri's and have more side effects plus sedation. Maoi' s also interact with a lot of food so you have to be careful about that too. Unfortunately most of them have some type of side effect so hopefully you'll find one that works for you.

You may have some rights under the ADA, for instance you can get "reasonable accommodations" to help cover time off for medical appointments or be able to adjust your schedule. Maybe you can check into your state dept of labor to see if they have any other resources that may apply too.

I just read a study that reported that the table salt found in processed foods is thought to contribute to autoimmune diseases because it stimulates the immune system in a negative way. Himalayan salt or sea salt is not believed to do this because it's not processed and still retains the minerals found naturally with the salt. I have tried Himalayan but now use sea salt because it is a little higher in sodium content. I'm also trying to eat as organic as possible now too.

Have you thought about Lupus or other autoimmune diseases? A high ANA can sometimes be associated with inflammation and an autoimmune process. Lupus can have a lot of different symptoms including neuropathy and heart problems.

I have it too. It gets worse if I'm standing in place or after a shower. I read an article awhile ago from Dr. Raj talking about this. It didn't say a lot about it, but he said that it's still not entirely understood but that it's likely from a lack of blood flow under the skin not from blood pooling per se.

Educate! Stay calm and direct even though you feel like screaming on the inside. It's infuriating when you are invalidated for everything you go through and even more so when dealing with a close minded doctor who doesn't listen and won't admit what they don't know. Doctors respond to research articles though so the more you have it might help get your point across. Vanderbilt's autonomic dysfunction site has an overview of Pots and also something about is Pots psychological or not. They of course say no it is not. Maybe a printout of that site could help too. A few months back I posted about having to go to the ER after a dose of Lexapro. When I went back to my cardio to tell him, I asked if Pots made you more sensitive to meds (which I've read about from a lot of people). He told me no, that I was probably getting depressed then offered me Paxil! Depression will not send you to the ER for excessive presyncope and hypertension! They try to turn it around on the patient when they don't have any more answers or symptoms fall outside of the box. If you talk to the psych consult perhaps you can explain and educate them as well. They can't diagnose a somatization disorder unless everything physical has been ruled out and you have documented physical causes for your symptoms. I'm sorry things are so tough right now but it sounds like you have great support.

I have CIDP (autoimmune based polyneuropathy) and was approved for IVIG because it's an FDA approved treatment. Pots is not one of the FDA approved illnesses for IVIG, and even though it's suspected to have an autoimmune component there still is not enough research on it yet. You could try a doctor to doctor review or appeal with your insurance but would have to show that all other treatments have not shown enough improvement and that IVIG would be expected to help. I will say that I had IVIG for 2 1/2 years before suddenly getting sick with POTS in December. While it helps the CIDP symptoms, It did nothing to prevent the onset of, nor has it helped improve my POTS symptoms.

I tried these at the beginning and for me they caused a lot of stomach bloating and constipation! I had to drink a lot of water to overcome this, then I was so full from fluids that I didn't have much of an appetite when it was time to eat. One thing that's helped me is to add 1/4 teaspoon of sea salt to Gatorade ( you can't taste the added salt) which is about 250mg less than a salt tablet.