POTSie78

Thank you for the all the information. I'm not sure what SFN is but the dermatologist at Mayo diagnosed me with ETR rosacea, spongiatic dermatitis, hyperkeratosis, Scalp pruritis/foliculitis and some disorder with my all my nail beds.

For the past year and a half I've been treated for dysautonomia/POTS by my electrophysiologist who diagnosed me after doing a TTT and ruling out other cardiac issues. Recently I went to Mayo and went through several tests. They had me withold my medications for 2 days and did their autonomic reflex screen, exercise tolerance test and some bloodwork. Everything is coming back normal now except I have exaggerated heart rate reaction to exercise, severe dyspnea, my aerobic capacity is below normal and now I have 5 different skin diagnosis?? My paraneoplastic panel and tryptase levels are normal. I was not able to complete the 24 hour bp monitor because of faulty equipment. I am quite confused by these results and still waiting to hear what Mayo says is wrong with me. Has anyone else experienced something like this?

My mother has it. Its caused by sarcoidosis in her case. It also affects the roof of her mouth.

Sorry I don't have much information regarding success but I am currently being seen by the Mayo clinic in FL. I've had one appointment so far and will be going back next week for a bunch of tests. The doctor seems to be more interested in my fatigue than anything but is putting me through their autonomic reflex and cancer screening. I have already been diagnosed with POTS by my electrophysiologist so I am hoping to get a little more detailed information about whats actually going on with my body. The dr is nice and asked what specialists i would like to see in addition to him and he set that up. The only problem I've seen so far is that when reading their version of my medical history its not accurate but thats fixable. I have to say I've been very lucky to have 2 really great cardiologists (EP and an Invterventionalist) but I am hopeful Mayo can dig a little deeper into my situation. I will keep you updated as I spend more time there.

My diagnosis of dysautonomia came after I had stroke like symptoms in 2020 and spent 3 days in the hospital. I had kaleidoscope vision, slurred speech and weakness. After my vision returned I then had a headache set in. After getting out of the hospital I was sent to an ophthalmologist who diagnosed me with occular migraines that can occur without pain. I was told by the ophthalmologist that these are neurological. I was also told by my PCP that there is recent research that migraines could be TIAs that don't leave permanent marks like usual TIAs. So to me it sounds like there's various causes. I was also sent to a cardiologist who then sent me to an electrophysiologist that diagnosed me with dysautonomia and then eventually said that I have POTS. My EP has been treating me with propranolol and Gatorade. I also take amitryptiline, topirimate, Singulair, loratidine, aspirin and crestor. I also take imatrex and 800 mg ibuprofen to break my migraines. My symptoms are not well controlled so my EP implanted a loop recorder becausw i have an arrhythmia and my PCP has me wear compression socks. I also went to a specialist at Mayo last month but he's not sure I have POTS because he did a poor man's ttt and didn't see the response you usually get with POTS. However I was being treated for it at the time and have to go back for a hole bunch of their tests off all my meds. I have bp and hr thats all over the place, presyncope, severe sleep apnea, lots of gi issues and now skin problems and trouble walking. From 5th grade and all the way through high school I actually lost consciousness several times. I have 20+ years of migraines and gi issues since birth. I don't have much for answers but I am hoping to soon and will keep you posted.

I'm sorry you are going through all this. Unfortunately its very common to be dismissed by a doctor. The neurologist i was seeing disagreed with my electrophysiologist that diagnosed me with POTS through several tests.. He said I couldn't have dysautonomia because I am not diabetic. He talked about doing an MRI of my lower spine because I was born with spina bifida but he said he didn't want to open that can of worms. Ugh! So I am now seeing a different neurologist that specializes in dysautonomia and is putting me through more specific autonomic tests. Don't quit advocating for yourself. You know when something isn't right ith your body.

I was told to wear them all the time except when sleeping.. I too get muscle aches but I don't know if its normal. I assume it is since the garments limit my movements somewhat and it goes away if I stop wearing them for a while.

Hi @Pistol. Thank you for your encouragement. 🙂 When I mentioned coping maybe that wasn't the right word. What I meant is that people like yourself have perservered through the ups and downs trying to get answers and a treatment plan that helps. Right now all I do is take is propranolol, medicine for migraines, increased my fluid and salt and wear compression socks. My symptoms are still uncontrolled but I know there are other things to try with some positive outcomes. I look at you for example being able to control your autonomic seizures and getting iv fluids to help combat symptoms. That is very encouraging to me that more can be done for me once we know more about my specific dysautonomia. Right now My doctors won't give me iv fluids unless I go to the emergency room first and I don't want to do that every few days...ugh. when I set up my appointment with Mayo I had expectations for treatment since I was already diagnosed but now I have to go through all their testing. I am hopeful that their testing will be more precise and will give me more detailed information so my doctors can do their best at treating this.

I'm sorry you're going through so much. I understand the frustration this causes on top of not feeling good. I see 2 neurologists, 2 cardiologists, a gastroenterologist and a PCP. My 2 cardiologists are in agreement that I have POTS based on TTT and numerous other tests. 1 neurologist doesn't believe you can have dysautonomia without being diabetic and the other neurologist doesn't treat anything but my sleep apnea. My PCP left the area so I had to start over with new one. Its been very frustrating because my treatment has been very conservative so I started going to the Mayo clinic. I had my first appointment with them recently and found out I have to redo some of my tests and have some new ones. I feel like I'm back to square one but I am trying to stay positive since Mayo is a good place. Its been hard to be patient waiting for answers and seeing multiple doctors and all the expense and time that goes with it. I keep hearing the words of my cardiologist ..."we call it the million dollar workup. what you have is hard to diagnose and hard to treat." That turned out to be so true but I see others who found the right treatment and can cope with this. I want to be one too so I will keep pushing forward. And thanks to sites like this one, it reminds me better days are out there.

I'm in the same boat. My bp used to run low to normal until my dysautonomia diagnosis. I was started on propanolol and other meds for migraines and nerve pain. I was also given midodrine in the beginning but was then told not to take it because my bp generally started creeping up after increasing my salt and water. The other day at the dr my bp was 140/110. My distolic is now typically 90 and above but then it I still have times where systolic and distolic drops low. When they check my labs my sodium is barely in the normal range but my cholesterol is high so they started me on crestor. To my understanding they haven't specifically addressed my bp because it is labile. So far they haven't been able to control my hr and now I'm having more issues with high bp. I would suspect I am getting too much sodium except that dosent show in the labs. Sorry I can't be of more help other than that I'm going through it too.

My hr continually jumps around sitting or standing. I'm typically in tachycardia but sometimes I go into bradycardia and then back to tachycardia. The only relief I get is to lay down or for a short time after I take propanolol it will shrink the range some but still changes 40-50 bpm. I have an arrhythmia they found using a bardy monitor so they implanted loop recorder. They've also done 2 echos, 2 stress tests and a carotid ultrasound. The only thing they've found so far is PVC, PAC, ST, SA, some thickening of the heart muscle, thickening of one carotid, no plaque, trace tricuspid valve leak and mild mitral valve regurgitation. The last time I saw my new PCP she asked me why my hr was jumping around so much. I said apparently this is what dysautonomia looks like. It does make me anxious to know this is happening and that my drs haven't been able to control it yet. It's very uncomfortable and at times its scary because of how it makes me feel.

Yay! That's great news!

I'm very happy you are able to get some help! 🙂 I was not certain which way it was so I had to look it up trying to prepare myself should that be the road I'm forced to go down as well. I'm newly diagnosed and at the point where I am on FMLA and applied for short term disability since I have exhausted my paid time off. I am hoping Mayo can help me before i loose my job.

@MTRJ75 SSI has limited assets. SSDI requires work credits. Hope this helps.

I agree that the wrong dr can set you back. My cardiologist diagnosed me with POTS which he thinks is related to my spina bifida. The neurologist I was seeing said I couldn't have that because you only get that from being diabetic and refuses to look at my spine..ugh! So I set up an appointment with a POTS specialist at the Mayo clinic. I have a 2 month wait to see him and it's been really hard because I've been really symptomatic. I cant imagine waiting 3.5 months! I've begged my PCP and cardiologist to do something to get me back to work but besides propanolol, increased fluids/electrolytes and compression socks they would admit me to the hospital for fluids. I've had a lifetime of unexplained health issues but I am holding on to the hope that we are close to some kind of solution. I know this site has helped me realize there are better days ahead and that I'm not alone.

I also have narrow pulse pressure and my drs ask if I feel ok? Ummm...no I don't feel ok lol.

My Dr recommended I avoid caffeine and sugar because it is known to trigger symptoms.

thank you all for the encouragement. My Drs seem to think this is related to my spina bifida because I have had numerous issues since birth that no one has been able to put their finger on. I've had a lifetime of GI, kidney and bladder issues. Fainting spells and arrhythmia since 5th grade. Last year my gallbladder quit and now this. My Drs keep running blood tests and MRI of my neck but they never want to look at my lower spine. 4 years ago I was in a car accident and had severe whiplash and concussion and since found herniated and bulging discs in my neck. My PCP just told she could put me in the hospital and treat me with fluids. I would prefer to try that at home.

I am newly diagnosed with POTS and take propanolol and drink electrolytes to try and manage my symptoms. I have labile bp, arrhythmia and GI issues. My Dr also thinks I am hypovolemic. I am going to Mayo in a couple weeks to see their specialist. Is it typical to still feel weak, shaky and nauseous even if my vitals are decent (with decent meaning my pulse comes down to 90-115.) I also started bouts of profuse sweating and the flush I get on my forehead and cheeks started feeling like a painful sunburn. I feel like I am getting sicker and weaker as the days go by and it's really affecting my job. I'm on intermittent FMLA but that will be ending soon. I'm so worried about losing my job. Because of it I have insurance and income to seek treatment. No matter how devastating losing my job would be I feel too sick and weak to force myself to go. I can't even do the grocery shopping anymore, I can barely take care of myself right now and this is putting extra pressure on my husband. I don't know what else I can do to make things better. This is a heavy load to carry and the unknown is so scary. I actually broke down and cried last night. I know you've all experienced these hard times, what did you do to push through it?

I get adrenaline rushes but i feel it through my whole body.

Thank you for the encoragement. I'm in the US and I did have a TTT that showed POTS and probably hypovolemic. I've been on propranolol er and meds for migraines. I also was told to drink Gatorade everyday but my sodium barely in the normal range. I've been switched to the non er propanolol recently because my pulse and bp have not been controlled and now I have an implanted loop recorder for my arrhythmia and chest pain. I also have not been tested for vasoconstriction/dilation nor have I been treated with IV fluids. I found a dysautonomia specialist at the Mayo clinic I will see in a couple weeks but the long wait to get in has been hard. I've missed a lot of work and have exhausted my PTO and am on FMLA to try and protect my job while things are being figured out.

Being newly diagnosed with POTS the more I learn the more I question my diagnosis of pseudo seizures. 6 years ago I collapsed and when I came to I could barely speak and when I did I stuttered. I couldn't get on my feet so I had to crawl to my phone to get help. I went to the er and they checked me for a stroke and then admitted for a few days and gave me anti seizure meds. They then transferred me to another hospital who did a video eeg for a few hours. They couldn't find anything so they gave me that diagnosis.

I mostly just have the slurred speech and completely forgetting what I'm in the middle of doing or saying. I figured out to elevate my legs to keep from fainting. This happens often and is definitely worse when I'm tired or stressed. The latest thing I have noticed is my face turns bright red, I start sweating profusely, I'm short of breath and get super hot if I try to be on my feet at all. This will go on for hours. I feel like I'm getting weaker as the days go by. I am hoping this is just a flare.

I have slurred speech and trouble finding my words that comes and goes. Actually how I finally ended up with a POTS diagnosis after years of unexplained symptoms was started when I went to the ER with signs of having had a stroke. The first time I went to the ER for this I was diagnosed with psuedo seizures.

Thank you so much for the information. I will definitely look into this further.