tgleiker

Hi, I had a series of blood tests sent off to the Mayo Clinic to test for autoimmune- I think it's called the neoplastic array with AAG. Hope that helps.

I have had similar symptoms but not all the ones you have listed. When I had a consult for POTS at Stanford they said there is a form of POTS that is connected to all the symptoms you listed. Have you been tested for the autoimmune form? I am on Mestinon and it helps with many of the symptoms associated although they have not been able to confirm that I actually have the autoimmune form.

Hi, All

I finally got into an appt at Stanford on Tuesday at their Autonomic Clinic and unfortunately it seems as though there aren't too many options as far as medications for me since I also have OH and taking Midodrine at the lowest dose brought my BP high enough and it didn't help. I couldn't take a higher dose because then it would bring my BP too high. I tried Propranolol at the lowest dose and it didn't really help my tachy and brought my BP too low, therefor couldn't increase the dose.

Dr. Miglis at Stanford believes my POTS since it started five days after I got my gallbladder removed, is caused by a festering small fiber neuropathy that was sent over the top/triggered by the surgery, but that doesn't make too much sense since the neuropathy I have didn't start until a couple months into it. Or, that it is caused by what he says is autoimmune form of POTs which probably seems more likely due to the sudden onset for me.

He put me on Mestinon to try which is used for the autoimmune form and it is the only med that is seeming to help somewhat so far. He also ordered a skin biopsy and a Paraneoplastic Blood Panel with AAG to help determine if it's one or the other that is in fact causing my symptoms in POTS.

Do any of you take Mestinon or have any knowledge of this potential form of POTS and what it means exactly being possibly linked to Paraneoplastic Syndrome or Autoimmune Autonomic Ganglionapthy? From what I've read so far it seems like it is linked to cancer and the possible treatment is iv immunoglobulins like a form of chemo.

Is this similar to what others have been tested for? I have fears around knowing whether my issues are stemming from this, and also around the alternative of not finding the answers for a cause to what I'm experiencing that all of a sudden changed my life.

~Tara

I'm unable to be upright for longer than 10-15 minutes at a time, even sitting, so getting out in the field is very difficult. I have been able to find a little bit of work to do online from home though. But, since I can't drive and be out of the house without reclining or feet up for the most part, working otherwise is very challenging.

Interesting- I also have a hiatial hernia and know someone else that does too...

From what my Neuro said regarding differential diagnosis is when there is a drop and also a drop in BP it could mean that you are having a Vasovagal response rather than POTs. There are differential diagnoses as such, but I know that they were checking me for that because my HR had dropped at one point, but then most of the time now it is sustained for a period of time hence the POTs diagnosis.

Thanks so much, Nymph! It feels as though I have an autoimmune disease, but all my ANA and inflammatory marker tests (which I find strange since I have noted inflammation in my body) have been normal so they don't think I do. And, yes, I was just dx with POTs a few weeks ago and Orthostatic Hypotension a month ago. These symptoms started after I had my gallbladder removed at the end of April. Most of my other symptoms started 6-7 months ago.

Luckily my husband got a little bit of a better paying job during all this which helps and we have qualified for some public assistance- my baby has some challenging issues as well so it helps a lot for his really expensive formula that is now being taken care of, etc, but I still made much more. Also, I am self-employed so unable to get SDI. If it seems like I won't be better for a while I am going to try to apply for SSI. I am doing what I can and having some luck with some online stuff so hopefully things will work out.

Thank you!

I was just dx'd a couple of weeks ago and before the beginning of May was able to work and drive all over the place. I am a Professional Counselor and have worked as a Program Director for in home behavioral therapy for kids with Autism. I had to stop with the company I was contracting with because I have no longer been able to drive due to not being able to even sit upright for a period of time or be in the field because it requires time on the feet and activity with the people I supervised and the kids they worked with. So...now, I have been applying to every online job possible and have started teaching online, doing some online tutoring, and some odd and end online jobs. I was the main income provider so my family has taken a huge hit, and I am not able to make even close to as much as I used to, but I am taking what I can get. These posts do give me hope that some day I will be able to work in the field again.

Gettingcloser09: Hi! I think we're in similar situations, although my Neuro at Kaiser doesn't know much so I am being referred to the Autonomic Center at Stanford. Where do you live? Let me know how it goes at UCSF. I'm interested in the different approaches btwn Kaiser and UCSF.

Yes, I have dx POTs as well, so I have both. My resting pulse on tilt table was about 77 and then during the upright went from 99 to 148.

I asked my Neuro that and he said that he wasn't sure lowering my HR was going to help with my symptoms but maybe if my BP went up a little bit more it might help...?

Hi, I was just dx'd with POTs two weeks ago and my neuro doc (before getting into Stanford) started me on trying 2.5mg Midodrine 2/day and it's not working too much in helping my symptoms. It is increasing my BP too much so I can't take an increased dose. So, my neuro recommended for now to try going off Midodrine for 5 days to see if I want to be on it or not and then start on 20mg Propranolol 2/day. I have Orthostatic Hypotension, but the extra salt and Nuun tablet intake alone is raising my BP enough to help that. Has anyone had a similar experience?

Hi, I was definitely more emotional after the tilt test and it took me a few days just to recover from it. It was not easy to go through. It got better for me and I hope it does for you too.

Thanks Katie. That gives me hope for the future!

Tara

Thanks so much ladies. These are great tips. At this point it is hard because I can't sit upright for longer than 20 minutes so have been figuring out how to modify things to be able to do them in that time or reclining.

Are you able to drive? I haven't driven because I'm afraid of getting dizzy. We figured it out that I can probably drive a few minutes in our neighborhood and then stop and recline my seat and pause before I do what I need to for a few minutes and then do the same again before coming home, but I am scared to drive on the highway to get anywhere else as it's not that easy if I were to need to pull over.

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I got an MRI last night because of my migraines and oh my, that was crazy and really messed with me. The loudness and intensity of the vibration was hard crazy.

I really appreciate this forum already so much. It is something that is very hard to describe and explain to friends, and even my husband, but he is super supportive, but I am slowly trying...It helps to know there are others in a similar boat- thank you!

Hi, All

I am new to this forum, but I am soo thankful it is here! I have had some different chronic illnesses and health challenges throughout my life, but just since about December my whole life feels like it has been turned upside down...

It started with chronic nausea, night sweats, abdominal pain and discomfort-- in February I got bronchitis, laryngitis, and pneumonia and was out of commission for about two weeks, but other than that I was driving every where in the East Bay (I live in Oakland, California) for work, taking care of my household including my husband and 3 boys who live at home (8, 3, and 1) until the end of April.

One night in the beginning of March I was talking to a friend outside of church and I felt as if a baby had kicked me and then felt a bulged spot on my right side and had some pain but knew I wasn't pregnant. I had a doc appt the next morning for something else so asked her about it then. My doc checked me over and I had several tests over the next month (ultrasound, liver biopsy, hida scan, etc). I was told I had severe fatty liver disease (non-alcoholic) that had happened in the course of two years, as well as a low functioning gallbladder. Docs thought that my gallbladder issues were probably causing a lot of my abdominal pain and my chronic nausea so recommended I get it out. I had it removed on April 27th and I seemed to be recovering just fine which was amazing to me coz I've always had problems with things, but then five days later on May 3rd I all of a sudden got severe abdominal pain and ended up going to ER that night coz they wanted to rule out complications from surgery. CT scan came back fine, and the only issue was that my liver enzymes were really high- higher than they should have been post-surgery, but they didn't do anything about it. BUT, what they didn't investigate was the presyncope episode I had while in triage. I was sitting there and all of a sudden the nurse asked my husband if I looked pale and he said yes. I noticed I was extremely nauseas (totally sick to my stomach and quesy), dizzy and lightheaded, I was soaked in sweat, and I did not feel well at all... The nurse checked my pulse and barely detected it and my BP was like 50/30. He rushed me to get an EKG, but when they got my into the bed, I was fine. We brushed it off as a fluke because I had never experienced it before...

But, that was the start of it all-- since that time my life is completely different. I can't stand or walk for more than 5-15 minutes depending on the time and can't sit upright for longer than about 20 minutes before I start to get presyncope again... My life stopped dead in its tracks. My faith and my family are the only things keeping me going. Since then I have had more symptoms develop especially in the last 5-6 weeks-- a chronic low-grade fever every day, polyneuropathy in my feet and now starting in my hands too, migraine headaches weekly that last 2-3 days, some blurry vision at times, fatigue, reduced sweating, etc. It's been pretty awful....

I have gone through so many tests it's crazy, as I'm sure you all know and the last person I was finally referred to after I was diagnosed with Orthostatic Hypotension was my neurologist. He determined that I likely had POTs when he realized that my HR was increasing upon standing. I was diagnosed two weeks ago today by TTT (man which I'm glad I got a fast dx because it seems like for so many it can take years and I thought mine was long). Luckily my BP hadn't dropped because of the increased salt my neuro had already started me on so I didn't pass out, but I started shaking and feeling horrible at the end of it. My HR went from 77 to 148. My neuro doesn't know much about POTs so I am being referred to the Autonomic Center at Stanford, but won't be able to see someone there until September:(

So, that is about me, but how do you all cope- day-to-day? Do any of you have kids? How do you approach it with them? It has totally affected my kids and my husband already for sure...How do you take care of things daily?

For electrolyte/salt increase I got these great NUUN tablets that you put in water -- they work pretty well and they taste pretty good rather than just salt tablets, and my neuro has started me on Midodrine but it doesn't really seem to be helping-- I love baths so I usually take them rather than showers, I bought a regular size reclining seat that I take with me to go to church and outdoor places, I cook dinner in 5-10 minute increments lying down inbetween, and lie with my kids on the floor to play with them. But, I can't really take care of my 1 year old for too long at a time because he needs a lot of up and down.

What do you all do to modify things? Is it similar for you in not being able to sit upright as well for a period of time? Do you drive? How do you do things like getting a haircut? Any tips for making life a bit easier with all this?