StayAtHomeMom

If it is safe I would have her do a poor man's tilt table test. Write your data down and bring it to her cardiologist. The cardiologist can order a Tilt Table Test. The TTT will show if she has POTS or another form of dysautonomia. At her age dehydration is a possibility so make sure she is drinking plenty of water. You mentioned a little about her BP but not HR. POTS is defined by an increase of 30 BPM or over 120 when going from laying to standing. If she doesn't have the HR increase it can't be POTS. There are many conditions that can cause dizziness though. Statistically speaking having POTS her age, it is possible to grow out of it. My 15 year old son is exhibiting POTS symptoms. He gets a TTT done at the end of the month. If he has it I hope he grows out of it. I hope she feels better soon.

See if you can reason with them about trying some medications while you do the lifestyle changes. Then after 6 months or so try to wean off them. We are doing that with my hubby for his high BP and high cholesterol. Medication has side effects and if you can treat without it then it would be better. But it seems like most of us need the meds in order to do the lifestyle changes they want.

I wish mine would resolve. 3 1/2 years and counting of not being able to get a deep breath consistently.

Could it just be the incense? I know certain smells bother my allergies.

It is nice they are doing it outside. Even though I smoke, when someone smokes inside it makes me cringe. Have you noticed a difference between e-cigarette smoke and regular cigarette smoke?

Check with your insurance. My insurance does not require a referral. Some doctor's offices may though. Has your hiatal hernia resolved? If not try a good chiropractor. Chiropractors aren't for everyone but the scientific theory behind their practice seems sound. I am having the same issue with my underlying cause. None of my doctors seem to care. They acknowledge there is one, but they are playing the waiting game instead of searching for it. I have plans to go to a "university setting" soon to try to investigate underlying causes. I need to collect all of my records first and I am wanting to wait until my oldest son gets tested before I go. The more data I have the better chance I will have. My POTS specialist is a neurologist. I am actually thinking of seeing a rheumatologist because I have never seen one and maybe they will find my underlying cause. My mom (who has RA) has suggested I see one considering all the joint pain and swelling I get that has all started when I was a teenager. But I get dismissed so easily because I am so young that I haven't wanted to go til I have some solid data to show. It seems like they only try to find an underlying cause is the patient demands it or if the symptoms are just that bad. When my mom told her PCP I had POTS she told her it was no big deal as long as she takes her meds. It feels like a lot of doctors have that attitude towards POTS. I wish some of these doctors could walk in my shoes for a bit. We all feel your frustrations, and hopelessness. Dysautonomia is a crappy diagnosis. My best suggestion is try to find the little joys. And try not to compare yourself from before you got sick. Symptoms usually cycle, so even it is bothering you now, it will not always bother you.

That is interesting. I did find out some medications have gluten in them so if you are serious about being 100% gluten free make sure you check with your pharmacist as well. Always thought it was weird that gluten could be in medications.

I only have POTS and cigarette smoke doesn't bother me. But I am the smoker so that is probably the difference. I would assume that is your MCAS as well. Does it happen when some one is actively smoking or just when you smell the smoke on someone?

Having POTS can be a life changer but it does get better. Even though it doesn't seem like it, your symptoms will ease. Have you seen a GI and had a scope done to make sure nothing is going on with your stomach? Contacting your doctor does not make you a nuisance. They should know if things are bothering you so that they can try to help. That is what they are for. I hope you feel better soon. I would suggest trying to find something that helps you take your mind off what is going on. Read a book, or play a video game. That's what I try to do.

For me it is every time I stand. But the amount varies. It is at least a 20bpm difference though (without meds). I can have episodes of tachycardia while laying down but it is usually after I standing and it is just taking a while to come back down. There are other conditions that cause tachycardia at seemingly random. Tachycardia is a symptom of of many things. The defining symptom of POTS is tachycardia with positional changes.

Did you actually have an elevated SED to check for inflammation? Or just best guess?

Try getting a fitness wearable. Like a fitbit or Garmin (I prefer Garmin they are waterproof). Get the one that does HR monitoring. It isnt perfect as it only checks ever 2 minutes but maybe you can have some raw data for at night. I bought mine shortly after my diagnosis and it helps when I don't feel good or if I am doing something I can do a quick check and reassure myself I am fine. Or tell myself to go lay down

My cycles vary. It could be each day is different, or sometimes I will have dizziness for an extended period of time with my other symptoms cycling. I try not to plan anything that can't be changed easily because my body can vary so much. I feel my POTS is pretty well controlled with my medication combo but I still have additional symptoms that can be bothersome. Good luck at your doctor's appt.

I think the GI issues most of us have are related to dysautonomia in general. There is a dysfunction with our autonomic systems. Your GI symptoms sound spot on like mine though. If you ever figure it out let us know. Good luck.

Most doctors assume dysautonomias is because of low blood volume. Some cases are, and some aren't. In theory adding water with the extra salt, to help you retain the water, ups your blood volume. I am not so sure about water/salt treatment. I know I crave salt when I feel bad though (I have POTS) so maybe there is something to the theory. Also (at least in the US) most people don't drink enough water. There is also the misconception that POTS (at least, it may be dysautonomia in general though) is due to deconditioning. Which a lot of people on the forum have seen otherwise. I think there is not enough answers to dysautonomia in general. And our disease is not well known enough for there to be a lot of research being done. So the doctors prescribe simple things that may help. Along with medication. And there are so many differences in symptoms and care for each individual patient. Out of curiosity how much water were you drinking a day before you cut it down?

I, unfortunately, have not been able to get consistent deep breaths for over 3 years. It never goes away, just some days are worse than others. Originally they thought asthma but the meds made me feel worse (turns out they were raising my HR higher). They still don't know why. Have been checked for MS and thankfully I don't have it. As soon as I can get my records together I am going to go to a university about an hour away and see what they can figure out. I suspect autoimmune since it runs so heavily in my family but my ANA keeps coming back negative. My oldest son is showing signs of POTS as well, I have him scheduled to see my specialist at the end of the month. Hopefully if he has it (I kind of hope he doesn't) then they can shed some light on whatever is going on.

I would go to your regular PCP and talk them about getting back on propranolol or do further testing. Just because we have POTS doesn't mean we don't have something else that can suddenly crop up. I hope you feel better soon.

I would like to start with POTS is not a disease by itself. It is a cluster of symptoms. There is always an underlying cause. It may never be found but there is one. Autoimmune is definitely one of them. Have you seen a rheumatologist yet? Considering your age that can rule out somethings and point to others. Also considering you are diagnosed have they done the catacholmine testing yet? Generally it is a 24 urine test. It rules out an adrenaline secreting tumor (can't remember the name of it right off the top of my head). Personally I take one medication that helps my heart and another that helps my other symptoms. It is not perfect and sometimes some of my symptoms are just there, but will cycle away. For instance my breathing issue was much worse last night for no reason I can think of. I just took my meds like usual and woke up this morning with my breathing issue back to "normal" levels. I have days of extreme exhaustion, rest for a few days, and it will go away. It just seems like it is the nature of the beast.

That is interesting. Never heard of someone finding their dysautonomia during a routine checkup. You are definitely lucky. Almost everyone else I have read about had to fight for their diagnosis and usually took a long time. I remember how helpless I felt in the beginning. I thought I was going crazy.

No my midodrine causes tingling scalp and sometimes tingling skin elsewhere. It was freaky at first but I have gotten used to it. It only lasts a little bit and not everytime I take it, but about 90% of the time. It also causes a slight raising of BP. When I am on both my metoprolol and midodrine my BP is normal 120/80. I was very excited when I found this out. Midodrine is a medicine my specialist said I can adjust as needed. There are days I don't take it at all. When I know I will be resting all day. And there are days I can take 3 whole pills a day. When I know I will be on my feet for 15 hours. (My in-laws and my family went to the Ark, I was able to do it because of my midodrine. I was very excited). Sometimes the unexpected doctors help the most. My cardiologist knew nothing about POTS but was willing to learn. When I had my first TTT the technician walked out for a minute and I heard her ask someone in the hallway how long someone with POTS was supposed to be on the tilt table. Apparently not a lot of people in my area have my condition. At least not enough people for the doctors and technicians to know exactly what is going on. That being said. It took me about a year and a half to get my diagnosis. Which is much lower than the average.

It is autoimmune, so basic autoimmune treatments can help. Also PT and chiropractor.

Have they checked for ankylosing spondylitis?

If you have asthma don't let them put you on propranolol. They tried that on me first and it made my breathing issue worse. (It is my main symptom and I am not asthmatic) next was a calcium channel blocker that helped a bit but my metoprolol was my saving grace. I also take midodrine during the day. It helps my non heart related symptoms. A lot of people don't like it because of the tingling sensation. I have been taking it for a year and still get the tingling for about an hour in the middle of my dosing (it lasts 5 hours) but I think it is worth the tingling to get some relief from my symptoms. It can only be taken during the day and you can't lay down with it or it ups your BP to dangerous levels. It is a nice boost to help me during the day though. If I remember right a lot of people with dysautonomias have changes in tolerances to meds. Good luck at your appt on Monday and I hope you got a good cardiologist. My first was an idiot but my second saved my life.

I would definitely try the beta blocker. I take metoprolol and it helps a lot of what you describe. There are many types of beta blockers and low dosages don't mess with your blood pressure much. I take 25mg and it lowers my BP by about 10/5 points. I have normal BP so have it 110/75 is fine. It definitely helps the tachycardia and heart palpitations. I can most certainly tell I am late on a dose because I can feel it. When I am on it I feel more normal. Having a disease or disorder that cause so many things makes it hard if you develop something else. You can keep trying to get the doctors to dig more but honestly most seem to only care about alleviating the symptoms then finding the cause. Good luck and I hope you feel better soon.

Have your potassium checked. I get leg pains and when I have an electrolyte drink with potassium it goes away by the next day. I never had this issue before until I got sick with POTS 3 years ago.