StayAtHomeMom

Symptoms vary in intensity by person and even by month. Meds help the roller coaster ride. 3 years ago when I started I couldn't drive I was so dizzy. Now I function OK as long as I don't overdo it and I am aware I have limitations. I work full time and raise a family. My house is usually a mess because I don't have the energy to clean but it does get better.

After my diagnosis I looked back and I think about the little things. I remember being lightheaded when I would stand up (doc said dehydration), loving salt on everything (my mom said I oversalted everything I cook), high heart rate (98 sitting was normal, blamed on smoking), 12 hours of sleep has been the norm for me since I was a teenager (am 32 now), exercise was very exhausting, panic attacks/ anxiety started at 17. You know just the little things. My children are growing up and my 15 year old is showing symptoms. And it started with little things. He would complain of itchy legs when doing dishes, chronic headaches, dizziness on standing. He is tall for his age (5'10") and I am hoping it is just the growth spurts. Every six months he grow a few inches, then stops for six months. I hope he grows out of it. He manages without meds at this point because the pediatric cardiologist said dehydration. I may have to get his diagnosis soon because his symptoms are starting to interfere with his life. My family has no history of POTS. Autoimmune and cancer runs high but not POTS or symptoms similar.

I have read the same. But assume it is right unless your symptoms line up perfectly.

Maybe lyme's? Has that been checked?

Number 10 is an interesting observation. I may have to check that one out. Never noticed. All your symptoms seem to center around adrenaline. Have you been tested for hyperPOTS? And with a good lawyer I can't imagine disability would be totally denied. There has been comparisons that POTS is like have heart failure. (Don't remember the exact quote but I have seen it many times in my research). In fact there was a recent article on CNN (I think) that talks about an Eagle's player's wife has POTS and the comparison was in that article. My POTS doesn't seem to be as severe as some. My major symptoms are more in line with classic POTS and cycle. I manage OK with meds and avoiding triggers. I found a job working for a small business in the office that works with me weird days. But my job is definitely one in a million. Good luck!!

Has your rash ever resurfaced or did you get pictures? If so I would try a dermatologist. They are more useful then I gave them credit for. I have a "sun allergy" rash that shows up every year. Happen to see my dermatologist while I had it (had acne issues until I was 30) and she did a biopsy and an ANA "because some autoimmune can manifest as a rash". She diagnosed it a polymorphic light eruption (" harmless" rash that shows up usually after not getting sun for a while then getting too much). Sometimes help comes from an unexpected source. My sister in law started her path to MS due to an eye doctor that saw something weird with the nerves in her eyes.

I would push down the autoimmune line if I were you. Autoimmune can cause funky rashes that come and go. Look up Hashimoto's. My aunt's only complaining symptom was a rash (that I know of) and she tested positive for Hashi's. It is a simple blood test and if you get proper treatment it can easily be under control and you feel better. Hashi's is a crazy thyroid autoimmune. It is more common than Grave's. I have read vitamin d deficiency is common in autoimmune but I also had a doc that said most people have low vitamin d. I don't know which is the case. Autoimmune runs heavy on my mom's side though. She has RA, aunt has Hashi's and another aunt has Sjogren's and Lupus. There seems to be underlying similarities but not enough to say yes you have autoimmune because you have this.

Mine was sudden onset. I have not been able to breath right since (3 years this month) I have other symptoms that come and go. Why doesn't your neurologist think you have autonomic dysfunction?

Not autoimmune: have been tested multiple times. Blood work comes up mostly normal (low vitamin d) and tried to get an endo to check plasma catecholomines but he declined saying it changes by position (duh!) And tested my cortisol. That was normal. Normal EEG. no significant nerve damage. Negative MS brain MRI. I have a little bit of carpal tunnel developing but he said it barely showed. I am kinda of at a dead end and I am taking a break from doctors. The only thing we have found in 3 years of testing is low vitamin d, fatty liver, large kidney stone (in my kidney), start of carpal tunnel, and a cyst in one of my front sinuses. I will get in the mood again with some fresh ideas to try and all the tests come back normal. No doctor can give me a satisfactory answer to why my body is messing up. Best I get is it is your autonomic dysfunction from my neurologist and worst I have no idea. I function OK though. My new cardiologist made the comment she was surprised at how well I function because the few other POTS patients she has do not function as well as me. I am hoping to find some new ideas to test for on here. But it seems to be the same ideas to underlying cause. Maybe I will get lucky and stumble on it though.

I think we all want it to be something you can fix. I know I hope mine is something that can be fixed. Keep searching. Never give up.

I found an office job that works with me and my awful days. That helps me get up and go. I take meds (metoperlol and midodrine) that help when I feel bad. And bought a Garmin HR to live monitor. If my HR is not way high I push through it. If it is too high I lay down. I think avoiding triggers helps too. I think finding them is hard and it different for everyone but once you find them you learn to avoid.

According to my Allergist they only affect the nasal passages. In theory I am not sure but she swears it doesn't travel through the blood. If your insurance will pay for it I would ask for Qnasal. It is kinda of like using an inhaler for your nose but I thought it opened my passages better than Flonase. My insurance wouldn't pay for it though so I was only able to use the samples for a few weeks.

I don't have either and I am sorry I can't respond to your question. I have a question for you. What symptoms do you have for your EDS and what did you go through for your diagnosis? I am curious because I suspect I may have it (it is the only common thing left) but not sure if I should go through the hoops.

Lol no. I felt like they weren't going to find out what was wrong until I had one. My low point was about 2 years ago when I felt that way. Maybe should have worded that different. 😂

Maybe. I know in the beginning of my issues I had really bad watery eyes. I would lay down and it would look like I was crying they would flow so much. They have eased after about 2 years but they still randomly do when laying down. I have stuffy nose issues too but I have allergies. Started when I was a teenager and have gotten progressively worse over the years. So I am not sure if it is POTS related or not. Maybe try seeing an ophthalmologist or optometrist and see if they see anything in your eyes. My sister in law began her path to her MS diagnosis because of her eyes. There was something weird about her nerves.

Did you get tested for Sjogren's? Common autoimmune that is associated with POTS.

I remember my low point and I swore they weren't going to figure out what was wrong with me until my autopsy. That was 2 years ago. Since then they have found out what is wrong. And my life is better. That being said. Tachycardia in general can cause showers to be exhausting. I think we have all been there. Try a cooler shower or someone with you. I usually make my husband stay in the bathroom at least while I shower. Only shower in the evening. And I bought a Garmin HR to detect my heart rate (it is waterproof). I have learned the biggest trick to managing any long term health problem is to avoid triggers when you can, plenty of rest and water, and having someone to talk to about all of the crazy things your body is doing and how it makes you feel. I hope things get better for you. Good luck!

I think I would run down the CSF leak more. That article I read was about a runny nose. See if you can find a specialist. Maybe an ENT. I agree with a previous post. Your tilt table doesn't lie. But considering your history maybe your POTS can be fixed. Make sure they know about the runny nose and try to find a doctor that will listen to your concerns. Personally I had to do my own research and bring it along with the data I had from my poor man's I did at home for a month before they would stop saying it was all in my head.

Nothing on the muscle but I am curious, did they for sure fix the CSF leak? I remember reading somewhere that that can cause a whole host of issues and I remember thinking the issues sounded familiar. When hers was fixed she was magically cured though. It sounds like you have a long road ahead of you. I wish you luck.

Thanks for the update! I hope you find some answers with your neurologist.

Mine began out of the blue. I went for a short run (really not in shape) and could never get a deep breath after that. That was 3 years ago. Since then I have had weird symptoms kind of cycle. In the beginning I had tingling nose and fingers that would only get better after a cigarette. Stomach issues. Heartburn (no history unless I was pregnant). Dizziness and lightheadedness. Definitely felt worse after eating bread heavy foods. Had anxiety issues as well ( I have a history but this was different). Eventually these subsided or eased and then I would get new symptoms. Everytime I would stand up I would have to pee. I have a strong bladder and used to make fun of my mom for crossing her legs when she sneezed but I spent about six months not thinking it was funny anymore. About a year and a half into not breathing right I came across POTS and how not everyone fainted. I dismissed it in my initial research because I didn't faint. I did a poor man's tilt table and was shocked. Thought maybe something was wrong with my blood pressure machine. So I tried it on my 13 year old son who was about my size and his did the same. So I tried it on my hubby. His was normal response. So then I began finding a doctor that would take me serious and put me on a tilt table. I was diagnosed January 2017 with POTS. In September 2017 I was rediagnosised with POTS and he added autonomic dysfunction. I currently take midodrine and metoperlol ( sorry med spelling sucks). I suspect my oldest son has it who is now 15 but haven't pushed the diagnosis because he functions without meds but I suspect soon I will have to confirm it. No underlying yet. I am currently taking a break from doctors. I am tired of tests coming up normal. I suspect autoimmune because it runs heavy on one side of my family but ANA keeps coming back negative. Some people are OK without knowing underlying but I am not. I need to know for peace of mind and the hope that if I fix the underlying problem my POTS will go away. I suspect I have had it since I was a teenager but I have no proof. Some symptoms I dismissed as just my weird body but after my diagnosis I have wondered. I nowadays I do OK with my medicine as long as I avoid major triggers. Oh and salt and electrolytes help too. Sorry my post is so long.

My sister in law took Reglan for her gasteriparesis and it made her faint. I thought she was just weird and had an unusual reaction. Didn't know it can cause severe reactions with so many people.

Do you know if it all beta blockers or just that one?

You can try a second opinion with another cardiologist. Or search for a POTS specialist. Mine is a neurologist, so be mindful they are not always cardiologists. I would definitely see about getting a copy of all of your test results. Your tilt table sounded interesting and if they recorded the data correctly it may be unnecessary to repeat for a while. If I remember right there is a database on here to search for a specialist. You may have to travel. I travel 3 hours for mine. But it is worth it. IST is only subtly different. When I brought the possibility of POTS to my PCP she thought is could be IST ( I think it may be more common). I learned the hard way about taking meds before a diagnosis. Sometimes when it is not what is wrong the meds can make you feel worse. I would try upping your salt. It sounds like you are drinking enough water. Urine color and output are good indicators of hydration levels. Electrolytes may be helpful as well. The unknown can be scary but believe you will find your answer. Whatever it may be. And keep your spirits up. Good Luck!!

I get GERD symptoms but when they did the scope on me they found nothing. I had a stricture in my esophagus but no damage, no excessive acid, no h. Pylori, nothing. I just figure it is my body getting mad. I take Rolaids with gas relief to help the heartburn, but generally deal with it naturally. I had a bad reaction to the prilosec when they tried it on me. Made my POTS symptoms way worse. Ended up at the ER thinking I was having a heart attack. Took me 3 days to figure out it was the meds. After that experience is when I started refusing to take meds unless they had done a test proving I had something before giving me the meds for it. If it is bothering you I would talk to your doc about meds, and if it really bothers you I would have them scope you and see if they can find anything.