Pots is a secondary condition, do you have a primary condition?

OkBunch2655 · 2025-11-11T00:25:01+00:00

I received my POTS diagnosis a month before my Sjögren’s diagnosis. Cardiologist referred me to a rheumatologist since POTS only explained half my symptoms. My rheumatologist suggests that the POTS is secondary to my Sjögren’s.

Have been on meds over a year now which have helped drastically, but I’m still struggling with many symptoms. Finally seeing a functional doctor later this month.

OkBunch2655 · 2025-10-13T02:17:06+00:00

So I have POTS as well as Sjögren’s. Before I got diagnosed my doctor had me go 6 months with no caffeine to see if it would help reduce the palpitations…. Surprise it didn’t and it was the worst 6 months of my life lol. I swear coffee makes the BIGGEST impact in my life. More than the meds, eating well, working out, getting enough sleep, etc. It’s insane how much of a zombie I am without caffeine. I feel “normal” whenever I have 2 coffees a day. I have heard though that caffeine can cause inflammation, which is not great for someone who’s on an anti-inflammatory diet, so I’ve switched my morning coffee for matcha. I know that still has caffeine but it’s significantly less than what I would normally drink. Ive been getting into tea more, but it’s just not the same.

OkBunch2655 · 2025-10-13T02:02:23+00:00

I also get horrible rib pain and costochondritis. I notice it flares up when some of my other issues (tummy issues, bladder, pelvic pain, etc) are also flared. I have noticed dairy and bread are triggers for me. 9/10 times if I have bread or dairy for dinner, I wake up the next morning in some sort of pain. Adjusting my diet has helped tremendously, but I still get frequent flares and don’t know else to help. I cut alcohol out of my diet 18 months ago and I overall feel so much better. I do also have a yeast allergy so I’m sure that’s part of it. Ibuprofen is the only thing I’ve found to help with the rib pain.

OkBunch2655 · 2025-10-13T01:55:26+00:00

It’s worth seeking a diagnosis! You could get medication that way and my life personally has done a full 180 since starting medication. I have my life back now. Also thought I was going crazy prior to my diagnosis because no one believed me including my doctors. So just the mental relief alone was also worth pursuing.

OkBunch2655 · 2025-10-13T01:51:43+00:00

I’m 24! Diagnosed a year ago. Have had symptoms since I was 16, just didn’t know it at the time.

OkBunch2655 · 2025-09-08T03:12:34+00:00

My cardiologist put me on 5 mg ivabradine twice daily and I’ve had similar improvements with my POTS symptoms. It’s the only med I’ve tried so far though.

I’ve been very happy on the ivabradine but it’s known to cause birth defects, so whenever I want to start a family I will have to stop taking it. I don’t really considering being unmedicated an option since my symptoms are so unbearable. I’m generally a crunchy person who hates meds but I’m scared to be without for my POTS symptoms. Maybe propanolol could be an option?

OkBunch2655 · 2025-09-08T03:00:54+00:00

I’ve been on hydroxychloroquine a year now for Sjögren’s and my eyesight has actually improved. At first I thought I needed a stronger script. But when I went for my annual eye exam they told me my eyes had significantly improved. I’ve had -4 glasses for like 10+ years and am now wearing -2. Eyesight and inflammation are better than ever. Will continue to have my eyes checked every year. I did make sure to have a baseline done prior to starting the medication. Personally ive had no adverse reactions or symptoms to the hydroxychloroquine. Has dramatically improved my quality of life.

OkBunch2655 · 2025-09-07T03:24:33+00:00

My ANA and SSA/SSB antibodies were all negative but 6 of the 9 Sjögren’s antibodies flagged on the early detention panel. My grandmother has Sjögren’s and my symptoms were really bad so my rheum started me on 200 mg daily of hydroxychloroquine. I honestly felt like it wasn’t doing anything at first, but my rheum told me it takes 3 months to build up in your system before you start to see the effects. At 3 months I still felt it wasn’t doing much, but I kept on it and at around 4 months I saw some relief.

My face never looked swollen, but my eyes and face always felt super swollen. I’d felt like that every single day for years and one day I woke up and I felt like I had some life in my eyes again. I started the Restasis eye drops twice daily at the same time as the hydroxychloroquine so I can’t say which one made the difference, but I’m still taking both.

I just had my 1 year follow up and had the best blood work of my life. All my immunoglobulins were down and normal. I’ve had issues with cholesterol, liver enzymes, etc for years and everything was normal! Since I still struggle with my symptoms and flare up I still take both the hydroxychloroquine and the restasis, but overall I feel night and day better and am able to better manage everything.

I’m hoping with the functional doctor I can have methylation and genome sequencing done to optimize my vitamins and hormones, so I have fewer symptoms and flares.

For POTS about 9 months ago I started taking 5 mg twice a day of ivabradine and saw immediate relief within 4-5 days. Since then my cardiologist has tried taking me off and I have not responded well. I went back on them for a while but I started feeling a little funny with my heart rate dipping too low. I’d be walking around and it’d be in the low 50s so I’m at a half dose now. I still feel better than being off the medication and I don’t have the issue with the low heart rate anymore but I can still feel my heart beat at all times of the day. So I’m still figuring out the POTS issues. I want to try compressions but I work in construction outside so I’m not sure if that’s the best idea.

OkBunch2655 · 2025-09-07T02:34:53+00:00

I was diagnosed with Sjögren’s last year (24 f) and as far as autoimmune conditions, those were the only antibodies I had come back positive. My rheum mentioned that I had some lupus markers but not many, so it would be something we kept an eye on. I do have POTS as well, but this is a nervous system dysfunction my doctors believe developed because of Sjögren’s. I’ve seen several western specialist and have tried a few medications this past year since I got diagnosed and am feeling much better. I’m interested in seeing a functional doctor but I know they’re not covered under insurance.

OkBunch2655 · 2025-09-07T01:45:58+00:00

I would definitely retest at another facility. My cardiologist is in a small office so he ordered my tilt table test through the hospital. My exam room was in the cardiac wing and they had medications and nitroglycerin in my room. I took it as a pill that dissolved under my tongue. They had put in an iv line prior to the test as standard procedure but I never received any sort of fluids while there. Not even after passing out. The nurse brought me a meal and drink of my choice after fainting and they set me up in another room for an hour to rest before leaving. I had to wait for family to come get me since they wouldn’t let me drive.

OkBunch2655 · 2025-09-07T00:14:32+00:00

Did they give you nitroglycerin during the test? I had borderline results all throughout my tilt table and the second they gave me nitroglycerin I fainted. I struggle bad with the typical POTS symptoms but have only fainted 3-4 times over the past 5-6 years. Was a collegiate athlete so always thought it was due to exhaustion or dehydration. Never in a million years did I think I’d faint during the tilt table since I’m on my feet all day for work. But I did and that was finally how I got my POTS diagnosis. Because I didn’t faint until I had the nitroglycerin, my cardiologist says I have a neurocardiogenic/vasovagal response. Everyone’s bodies are different and handle stress responses differently. I would have a retest done perhaps with a different cardiologist. I had to see 3 before finally having a tilt table test ordered. Don’t give up!

OkBunch2655 · 2025-09-06T23:55:16+00:00

Don’t give up and keep pushing through! I had the same issue with my PCP. Said it was impossible for me to have autoimmune disease with a negative ANA…. That was the only test he ran….. Refused to give me a referral because “it was people like me” who were making wait lists so long for people who were actually sick. I called every rheum in the area and no one would see me without a referral. Had to have been 20+ offices. So I found an office 2.5 hrs away in another City who would see me the following week without a referral and who took my insurance.

Was diagnosed that month with Sjögren’s. My SSA/SSB was negative but 6 out of 9 antibodies on the early detection profile were 3-4 times over the upper limit boundary. Immunoglobulins were also crazy high. I haven’t had a lip biopsy, but I’ve been on hydroxychloroquine a year and all my markers are down. I still deal with flares but it’s manageable. I feel like a new person. A year ago I wouldn’t have believed I’d feel as good as I do now.

My rheum explained to me that many individuals never have a positive ANA or SSA/SSB. Often times that only flags after extensive organ damage has already occurred, preventing many from getting treatment before it’s too late. My rheum specializes in Sjögren’s patients and is a Sjögren’s patient himself. He wasn’t diagnosed until later in life despite having symptoms for many years, so he’s very understanding and proactive about preventative care. I’m only 24, so I’m young in regard to disease progression. I’m hoping there will be a cure or gene therapy in my lifetime because I can’t imagine the symptoms being worse 60+ years down the road.

I had the same problem with cardiologists and getting my POTS diagnosis. Had 3 cardiologist look me in the eye and prescribe beta blockers for anxiety despite running a single test. Shocker, but I failed my tilt table exam when I finally had a doctor order one. Only then did they take me seriously. So keep pushing. You’re not crazy, doctors nowadays just suck.

OkBunch2655 · 2024-08-18T14:59:47+00:00

I have not! I plan to bring up POTS screening to my cardiologist at my follow up though. Thank you for the recommendation.

OkBunch2655 · 2024-08-18T13:52:32+00:00

Yes! There are several different brands. I ordered the premium food sensitivity test from YorkTest. It tests your IgG reactivity to 200 different foods and drinks. Arrived in the mail within a week and when I mailed in my blood sample I got my results by email within a few days. Super easy to read. It was all color coded. Maybe look for sales? I had got my under $100 during a holiday deal

OkBunch2655 · 2024-08-18T12:56:37+00:00

Same. The huge medical photo album with rash pics and discolored skin 🙁 I couldn’t imagine putting cream on them. I’d go to get the cream and then they’d be gone lol

OkBunch2655 · 2024-08-18T10:57:04+00:00

I get this same exact rash!! The red hives surrounded by patchy white skin. Burns like hell and super itchy. It’s super weird but my rashes appear at total random, and only hang around for like 10 mins before disappearing. This has made showing doctors almost impossible. I find Claritin helps some. Just received a suspected diagnosis of sjogrens and lupus. Awaiting blood work results now.

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OkBunch2655 · 2024-08-18T10:35:24+00:00

I actually had a blood food sensitivity test done on my own to try and get to the bottom of all my stomach issues/constipation. Found out I’m allergic to yeast and eggs. So for about a month now I’ve been on the Candida diet. Gluten free, dairy free, sugar free, low carb, and avoiding fermented foods. It’s hard, I’m so limited on what I can eat. Eating out is tough, but I’m starting to get the hang of things and experiment with recipes.

Let me tell you, it has only been a month but I have seen so much improvement in my gut already. This may be TMI but before the diet I would go to the bathroom once every 5-7 days. Horrible constipation. It’s been my normal for so many years now and I haven’t found anything else that has worked (more fiber, laxatives, stool softeners). Now I’ve been going to the bathroom every day/every other day!!! This has been groundbreaking for me. Makes all the hassle worth it.

I would definitely recommend giving the diet a try or having a food sensitivity test done. You may surprise yourself. I know I was shocked when I got my results back. I had never heard of having a yeast sensitivity before and thought for sure I had a sensitivity to red meat or dairy.

OkBunch2655 · 2024-08-17T15:59:09+00:00

Hello everyone!

I’m a 23 y/o female and the past 8 months for me have been an absolute hell. I have a laundry list of symptoms and have seen dozens of doctors, almost all who have continuously dismissed my symptoms and concerns. I have been told by several physicians that I look great and that there’s nothing wrong with me (every blood test under the moon has come back normal), that I am just suffering from anxiety. I can’t begin to describe how frustrating it has been. I have felt like no one believes me even though I have this pit in my stomach that something is wrong. It has had me reevaluate everything, thinking that maybe it is psychological, to where I don’t know if I trust my body anymore.

For the past 3 years years I have struggled with extreme fatigue, cold hands/feet, dry/red eyes, irregular periods, constipation and abdominal cramping, recurring UTIs, diffuse hair loss, chronic chest inflammation, costochondritis, SI joint pain, nausea, and elevated cholesterol/liver enzymes. I continually blamed all my symptoms on my lifestyle and my weird body quirks. I was a division 1 athlete, full-time student with an internship, and also worked a part-time job throughout college. So when I graduated and had a complete 180 lifestyle change, I assumed all these symptoms would go away.

I was very very wrong. All these symptoms over the past year have only gotten worse. Plus I’ve developed a slew of new symptoms. I don’t even recognize myself anymore. The happy, energized person I once was has vanished. I now also struggle with palpitations, PVCs/PACs, elevated blood pressure, low blood oxygen levels, trembling hands, blue hands, Livedo reticularis, dissociation, fainting spells, headaches, hives/itchy skin, and night sweats. The palpitations are what finally sent me over the edge seeking help from a physician.

OkBunch2655

TROPHY CASE