Pistol

When women have worseining POTS symptoms during their period it is usually related to hormonal fluctuations, not blood loss. I am peri-menopausal right now and have worse POTS issues and during menopause testosterone levels are elevated in women, so I do not see a relation there.

@voxel - when they do the catecholamines they take them after 30 min of rest and then after 30 minutes of being upright. I was not particularly symptomatic that day but they were still elevated. Yes - my renin etc were all normal, just norepinephrine and dopamine were elevated. In my case with BOTH rest and being active.

@jeff_jefferson2 - I am glad your cardiologist takes your symptoms serious and is willing to test you. Most of us are not in that capable of hands! - Elevated HR upon exercise is normal and expected, desired actually! A healthy individual will try to achieve a certain HR through exercise for cardio-vascular health. The concern comes in when the HR goes up to extreme levels WITHOUT exercise - simply from the act of standing/talking/coughing/walking - even sitting, and WITHOUT any recognized arrhythmia. --- Good luck with your testing!!!!

I had all the mentioned tests done to rule out pheo. Even if they are normal - if your doc suspects hyperadrenergic based on YOUR SYMPTOMS then he might order a blood test for catecholamines. I had that done after the pheo work-up was negative and my catecholamines were elevated, confirming hyperadrenergic POTS ( based on both labs AND symptoms, as well as TTT). If all your tests come back normal you may be a lucky one and not have dysautonomia! - To be sure - and if you question your tests - you should ask for referral to a major autonomic dysfunction center. Once they receive your test results they will be able to tell if they feel you have dysautonomia or not.

@Mikayla - have they checked your Vit D and Vit B12 levels? And your ferritin? All these are commonly depleted in POTS and also cause the symptoms you experience. I was deficient in all 3 and since supplementing them my fatigue ahs improved and I have enough energy to be more active which in return improved my sleep cycle.

@darcyjohnson - exercise is essential in the treatment of POTS, but you have to start slow and increase to your tolerance. If you are not good with standing than start with supine and sitting exercises and slowly increase the time you can stand.

@Lainy - on this site go to the information tab, there are several excellent sites listed, including one for family of dysautonomia patients.

Until I was properly treated with medication yes - I had tachycardia everytime I stood up. Random episodes of tachycardia I guess could potentially be dysautonomia but not POTS. It could be IST or other tachycardias that can be detected with halter monitor.

Dear @Lainy - when you need to find a new cardiologist call ahead of time and ask for someone who is familiar with POTS. When I needed to find a local cardiologist I called the university hospital in my state and askes for a list of physicians that see dysautonomia patients. The list was small but I found a good one. Don't let them brush you off - just keep looking!

Yes - viruses exaggerate POTS. Extremely so. But please know that the fatigue, dizziness and malaise that comes along with a viral infection is normal, it happens to anybody. The tachycardia and palpitations are expected, even syncope is not uncommon. The best thing to do is wait it out, drink lots of fluids - chicken broth has a lot of electrolytes and salt - and keep your fever down. And even if you are not dehydrated - IV fluids are extremely helpful in a case like that. Get better soon!!!!

@Mikayla - welcome to the forum! I am so sorry that you are dealing with all this seemingly on your own. I can tell you that the fatigue and depression are very common for dysautonomia. .I suffered badly from them. I improved when I started not only heart meds but also SSRI ( it is prescribed for POTS but helps with depression ) and Ritalin ( helps with energy and brain fog ). Wit your low BP and fainting you probably could benefit by a vaso-constricting medicine like midodrine. A beta blocker often gets prescribed for the tachycardia. Are you currently using compression stockings? They really work. Once you start an some meds and are able to be more active you will feel less depressed and less fatigued. What are you taking so far?

@voxel - do you think ALL of your symptoms were caused by gluten intolerance? That would be wonderful news! - I know that POTS causes GI distress but what if GI distress causes POTS? And if you get better after changing your diet? --- I myself am not gluten intolerant ( tested and confirmed ) but it may help some other dysautonomia patients.

Dear @peachychou123 - if I were you I would do what the docs tell you or you will never get ahead. Yes - if you read ANY med's possible side effects you could get scared but they do not apply to everyone. Do no think that they all will happen to you. I would take the Cipro AS DIRECTED by your doctor, it should help for your elevated temp and may also help for diarrhea if it is bacterial ( my husband has taken cipro for both urinary symptoms as well as diarrhea and had NO side effects ). I have POTS and have no problems with antibiotics. Usually it is the infection that makes POTS worse, not the antibiotic. If you continue to feel so ill you really should go back to your doc - obviously you are not getting better ( and no taking your medicine does not help either! ). Please take care of yourself. I also get anxious about taking new meds but I also take them b/c I know what will happen if I don't - I will get worse. And usually I tolerate most meds just fine. Be brave! --- Also I would like to comment on your beta blocker: you said you stopped it because you are ill. I am not sure how often or how long you have been taking your betablocker but once you start it you cannot just stop - that could be the reason for your tachycardia!!!!! You have to wean off them slowly! And you have to do it under supervision by a doctor. Please - if you do not want to take your medication that is your decision but you truly should inform your doctor of that so he can warn you about possible complications from stopping. You also can check with your pharmacist if stopping your medication is causing your current symptoms. I had to stop my BB once for 3 days for a TTT and I was VERY symptomatic with tachycardia and restlessness etc from it - I KNOW what it can do to you when you stop suddenly!

@p8d - you can be very proud of yourself! I share many symptoms with you and also need to schedule my week around appointments or visits or certain things that need to be done - I understand the need to schedule rest days! So I totally respect how hard you have worked to be able to do what you can do now - that a girl!!!!!

@p8d - wow!!! I am impressed that you have been able to work yourself up to treadmill! I would so totally pass out! I do exercises as often as I can tolerate but my abilities change from day to day so I do whatever exercise I tolerate on any given day ( but I usually do not go without any exercise ). When I have a VERY good day I might exchange exercise for chores: mopping the floor and washing windows are my go-to "exercise".

@Pippie - I also am familiar with your symptoms. When my ANS acts up then I get diarrhea, heartburn, nausea, abdominal pain … it is directly related to the dysautonomia as per my specialist and my gastroenterologist. --- I am curious about some other symptoms you have: you mention low back pain and lower leg pain. Does this occur when your GI issues act up? I see you had a CT scan of the abdomen but have they done a MRI? I get back pain into my legs and diarrhea as well as urinary incontinence at times and my docs ordered MRI to rule out spinal causes. Especially if you feel faint when all these symptoms occur your doc may be willing to order an MRI of the lower spine to rule out herniated disc or other spinal causes.

Welcome to the forum, Jeff! Usually POTS causes tachycardia upon standing ( which is orthostatic intolerance ) but you CAN get it other times as well. In order to be diagnosed with POTS it has to go up within/for 10 minutes of standing. However - many of us ALSO get random episodes of tachycardia during the day. If your tachycardia is not specifically triggered by standing then there might be something else causing it, including ( but not limited to ) arrhythmia. If you suspect POTS you should ask your doc for a TTT. To determine the type of tachycardia you should have a halter monitor over several days or even weeks, depending on your docs opinion.

@peachychou123 - have you tried drinking Gatorade first thing upon waking up?

@voxel, @jklass44 - the meds I take work on a day to day basis and I am usually well controlled. But when I'm in a flare the BP goes up and even extra BB does nothing. Once I got IV BB to bring it down and it worked only for 2 hours before it came back up. jklass - have you tried calcium channel blocker for your BP? If you have excessive vaso-constriction this helps for that.

@jklass44 - yes, I am similar to you. I start with just feeling "off", then progress to sleeping difficulties, irritability, palpitations .. then diarrhea and heartburn, nausea … then I wake up in the mornings with chest pain radiating up my left neck and - without fail - when I check my BP is always above 140/90 with those symptoms. If I try to treat it with bed rest I end up not being able to get out of bed without passing out. If I ignore it or exercise I end up having seizures from high BP. There are no meds that help once I get this bad - the only treatment is 16 - 24 hours of IV fluids at 125 ml/hr. This rate seems to re-establish a normal pressure in the circulatory system that stops the faulty ANS signals that either dilate or constrict my blood vessels. This has been proven in my medical record - they gave me IV boluses one after the other in the ER and there was no effect. As soon as they started to run the IV at 125 or even 150 ml/hr my symptoms subsided, BP normalized ( from 150/100 to 100/60 ), palpitations disappeared and I am able to ambulate without any orthostatic symptoms. Even nausea, diarrhea and constant urination go away. I literally go from being a very ill person to someone very well. I always say that I "go into the hospital crawling and come out skipping". The people that witness this change are always amazed b/c I look extremely ill when I get that bad but turn into the best version of myself after the fluids.

Hi @POTS98 - welcome to the forum! I have hyperadrenergic POTS as well and I know that there are so many symptoms to overcome! My HR and BP is mostly controlled with BB and calcium channel blocker ( except for in a flare ) but there are surges - as you describe -, fatigue, brain fog, stomach issues, bladder issues …………… insert a lot more. My specialist always tackled one symptom at a time. Surges: SSRI, Ativan, Flexeril ( for muscle spasms ) and most importantly limited activity. And IV FLUIDS ( the only thing that will bring me back when everything else fails ). Fatigue: Ritalin, Guanfacine, daily exercise. Please ask your doc to check your Vit B12 and Vit D levels: they were extremely low and supplementation of those vitamins has helped a lot. Also: Ferritin. Many of the members on this forum have been diagnosed with these deficiencies and have found great relief of symptoms after rectifying them. Hope this is helpful - best of luck!!!!!!

@Pcola - I have several comments: first of all - do not be apprehensive about the new doc. He does not have to be a cardiologist or neurologist or endocrinologist to see dysautonomia [patients. My sisters go-to is a PCP!! In my case my PCP is MOST important but I do have a cardiologist and a specialist as well. They all work together for my care. The most important thing in a new doc is that he 1) has an interest for and an understanding of dysautonomia, 2) he is willing to listen to you and takes you and your symptoms serious and 3) he has answers as well as treatment ideas. If he does good on those issues tomorrow then you should be OK. ---- I know from my own experience that a UTI is one of the worst triggers - even during or even after treatment. My specialist says the same thing and he sees tons of dysautonomia patients. ----- I know that at night our adrenalin levels are supposed to drop. In my case - hyperPOTS - they some times do not drop and I wake up when normally people go into REM b/c the levels go down. When this happens it causes my levels to actually GO UP ( not only stay up ). This happens whenever something triggers my POTS. It is possible that the UTI has been your trigger ( even before you knew you had one b/c you must have had it for a while before you sought treatment? ---- I hope this is helpful. Best wishes!!!!!

@StayAtHomeMom yes, we suspect ankylosing spondylitis b/c I have lost the curve in my lower back. We might run the blood test for it but that often is false negative. There si no treatment for it anyway. Oh well! When I started with POTS in 2009 I went from a very active healthy person to being very limited, so I sort of aged over night then. The "normal" aging process - or other chronic conditions - do not scare me ay longer.

Since I developed POTS I have been struggling with generalized joint pains. Arhtroscopy showed increased synovial tissue and xrays?MRI show degeneration of spine. Labs are negative for autoimmune or rheumatoid. There is swelling and pain in knees, ankles, elbows and fingers. I am 51 years old. Not sure if it is age or limited mobility or something related to dysautonomia. I take Turmeric and it works really well (I can't take NSAIDS due to stomach problems).

@Sondra - I respond well to carvelidol (BB) and it does not affect my - at times low - BP. BP goes either way but it does not drop too low on it. Also - if your night time episodes cause your HR and BP to increase then I would take the BB at night ( I take it twice a day). Many people benefit from clonidine for these attacks ( although I did not tolerate that but many people do ). Maybe discuss these meds with your cardiologist?