MomtoGiuliana

I agree that I would talk frankly with your therapist. I saw a psychiatrist before my POTS diagnosis at the insistence of my PCP who was convinced my only issue was severe anxiety and depression. She evaluated me and wrote back to him that my symptoms could not possibly be caused by depression and anxiety (and furthermore she did not believe I had anxiety or depression that required treatment--she felt I needed a diagnosis and proper medical treatment). So I think such a specialist can be helpful in convincing a questioning PCP that there are separate issues--if they are truly working together.

Welcome to the forum. Very sorry that you are struggling with severe fatigue and medication issues. You may be interested in these past topics: https://www.dinet.org/forums/topic/23655-need-help-with-justifying-adderall-to-insurance/ https://www.dinet.org/forums/topic/23147-adderall-ritalin/ You can also do a search for keywords within the forum to find past discussions.

Many women with POTS and other forms of dysautonomia have children. Keep in mind that while not entirely predictable, for the majority, symptoms improve over time--and also can be improved with medication. Some women (I think I have read as many as a third or more) actually feel better during pregnancy bc of increased blood volume. As has been mentioned, these conditions are not necessarily inherited. I am the only person in my family to have any indication of symptoms. (I do think some people have mild undiagnosed dysautonomia--I think it is underdiagnosed). I developed POTS WITH pregnancy. Looking back I had mild and unexplained symptoms prior to pregnancy. So pregnancy was very hard and the year that followed was even harder. However, I recovered greatly after that and other than some episodes of relapse I have been well. Even when I was unwell and unable to do much physically, I was able to provide love and care to my child and even breastfeed (just a lot of sitting and lying down that first year). In fact I believe that my child reads and speaks at a high level bc in that first year we had so much one on one communication and close contact--talking, reading, singing, face to face. Ideally you want to be under the care of your specialist and a high risk ob/gyn. Not bc the pregnancy itself is necessarily high risk but bc they would know the most about the use of medications during pregnancy, if needed. As others have said, making sure you have support for the first year or years is important bc it is hard to know how well you will be and a young child takes a lot of energy on less sleep/rest.

Has your B12 level been tested? Low B12 triggered POTS, for me.

From what I remember, it is not necessary to taper off Prozac like it is for other SSRIs. I do remember tapering off over a period of a week or two.

I improved to such a great extent I decided to come off the Prozac to see how I would do. Overall I did not have worsening symptoms off the Prozac. It's really hard to know if the Prozac actually helped or if I was just going to improve anyway.

I've had two major episodes of POTS in my life that were severe and disabling--first one seemed to be brought on by pregnancy, which lasted about a year, 2nd by low B12, some 15 years later. However prior to and between these episodes, I experienced symptoms off and on. I've never been back to 100% after the first episode, although a whole lot better. I still have issues with tachycardia off and on, as well as other symptoms.

I get symptoms lying down as well. I don't think this is unusual in POTS. I also had tachycardia at night that would wake me up when I was early in my diagnosis. I still get it at times, and my hr can often remain high even when I am asleep (eg in the 80s bpm). I did not realize this until I started wearing a fitbit regularly to bed. My hr during the day when seated is typically in the 60s. For me lying down or standing seems to trigger symptoms (standing moreso--obviously, I guess).

I think there are various methods from what I understand. I saw a therapist for awhile--17 yrs ago--who used biofeedback and did a few sessions with me. I think he normally used it with people dealing with anxiety/stress--he did not profess to be a POTS expert--I was seeing him mainly for helping me cope with POTS at the time, emotionally/mentally. From what I remember the machine measured my heartrate and by watching my heartrate visualized on a computer screen I would use breath technique to lower it--basically it is a training device to assist a user to be more aware of aspects of their body and to learn what you can do (eg breathing differently) to affect physiology. I think biofeedback machines can also measure body temperature, brain waves and other functions. I have heard of it being used for POTS treatment. Not sure if there are many studies supporting it. My POTS specialist did not feel it would be useful for treating POTS. IMO it may be helpful for people with anxiety. I think it may be helpful for some forms of hypertension. If either of these are an aspect of POTS, biofeedback might be helpful for improving symptoms. I personally have my doubts that biofeedback would be a terribly useful tool otherwise for POTS. But I have to say that I have found breathing techniques helpful at times when I feel stressed about or fearful of symptoms, and anxiety is compounding my symptoms.

Yes. I had severe POTS during pregnancy and post partum which eventually pretty much resolved to mild symptoms--my child is now 16. However last year I suddenly developed severe POTS for a 2nd time. My B12 was found to be low. After several months of supplementation my symptoms resolved again to mild symptoms. There are published articles that link low B12 to autonomic dysfunction (I think the one study I remember found that teens with autonomic dysfunction improved with B12 treatment). There has also been a published article linking low Vit D to autonomic dysfunction. Many patients with POTS have borderline low potassium, from what I have seen here on the forum. I have it at times. Hopefully resolving these imbalances you mention will bring about improvement in symptoms for you.

I have also had severe acid reflux at times that my POTS is also flaring. I agree w Pistol that it can be all related; if your autonomic system is out of whack that can cause multiple medical issues. One thing that I remember helped me years ago was deglycerized licorice. Not sure why but it was more effective than any heartburn medication for me. Since this is an herbal supplement I would talk to doctor or pharmacist before using it.

I think basically in the US anyway it is unusual to have a vitamin deficiency. Or anyway that is the general view. There has been controversy over the issue of Vitamin D. Iron can be low for many women and a CBC can assess this which would be part of a periodic exam. It is becoming more recognized I believe that low B12 is not that uncommon. Especially in people over 50. But even younger people who are vegan or vegetarian or develop difficulty absorbing it for one of many reasons including taking certain medications. Probably if someone is experiencing neuropathy most doctors would think to check B12--hopefully.

Because you mention neuropathy I wanted to mention that you may want to have your B12 level tested. I was found to be low in B12, which was causing mild neurological symptoms along with a severe POTS relapse, last year. After 6 months on high dose of B12 the symptoms resolved nearly completely.

Wow, thank you for sharing. Really interesting. Many of us experience exercise intolerance--even after many other severe symptoms improve. This is important research!

Interesting that you mention the grocery store. For the longest time I would get symptomatic when in a grocery store or almost any large store--even before I was diagnosed I would experience feeling unusual when in a large store--and it still happens to me at times. I have avoided places like Target etc for that reason in general. I don't know if it is the lighting or what sets it off. I have felt faint standing in line for longer than 5 minutes at grocery store, but that makes more sense.

I get hand and finger cramps occasionally. It started around the time I was diagnosed with low B12. I see this was determined to be normal for you--hopefully your doctor is well versed on this topic. Low B12 can also cause autonomic dysfunction. In my case I had a full blown relapse of POTS along with other neurological symptoms until I got B12 shots and supplements over a few months. Low B12 is not uncommon.

Wow I cannot imagine the difficulty and pain you have gone through. It's sounds extremely stressful. So glad there was positive resolution legally at least. Resolution with family members may be difficult. Thank you for sharing. It is true that we rarely know anyone's full story and all the stresses and difficulties they face. I am glad you found support here when you needed it, for your symptoms/medical challenges. Sending a virtual hug!

I was also told by my endocrinologist that cortisol levels vary constantly--one reading is not necessarily very valuable from what I understood. I would discuss this concern with a doctor.

I had this problem as well a year ago when I had a POTS relapse. I had never had GI problems prior--it came up fairly suddenly. I also found I had to eat very small amounts and avoid certain foods that seemed to irritate my system more. Yoghurt, bananas I remember seemed easiest to eat and digest. Along with the lack of appetite and feeling full, I had heartburn and pain in my intestines. This went on for weeks and I lost 10 - 12 lbs. I am also thin to begin with. You may need to see a specialist to determine what the problem is and what treatments may help. It may dissipate on it's own depending on the cause. In my case it was finally determined I had low B12. I had B12 shots and started a supplement--after two months I felt nearly back to my normal baseline. IMO low B12 was the culprit in my case.

This is very common--to have worsening POTS symptoms just before and when starting a period. I am sure there is a relationship to hormones. I have heard theories but not sure there is a definite understanding of this.

Could the sugar in the coke have been what dropped your bp? I have to say however that I have noticed more pronounced orthostatic hypotension after drinking coffee. I drink it black typically (and I am not a daily coffee drinker--maybe 1-2 times per week at most). Maybe it is something in coffee other than caffeine??

I am not sure if I fit into the hyper category. However when I am in a POTS flare I have high bp when standing and I get surges like you describe. The thing that helps me the most--which may seem counterintuitive, is extra salt and fluids, and IV fluids if possible. Otherwise, increasing my beta blocker dosage.

DINET maintains a list of physicians here. I see there are two listed as being in Pittsburgh. If you are able to travel there may be others you can consider on this list. https://www.dinet.org/physicians/

Does your hr change from sitting to standing, or do you feel faint or have worse symptoms on standing? Have you had a tilt table test? Can you have your general practitioner check your hr and bp sitting and standing, at least?

I tend to have low potassium. It is more likely when I am in a POTS flare. I am not really sure of the reason for this, my specialist told me slightly low potassium is an issue for some people. It can be exacerbated for some by taking too much salt (he told me) and encouraged me to be careful about over-doing salt intake, although an increase in salt intake is recommended for POTS patients (which is a little confusing). When I was at the ER the very first time for POTS I remember they asked me if I had been vomiting a lot bc my potassium was low. I had not had any intestinal upset at all! There have been past discussions about this on the forum. eg https://www.dinet.org/forums/topic/18019-low-potassium/ If you are taking florinef that can cause your kidneys to excrete potassium so it is important to eat potassium rich foods if on florinef. But if you are like me, you may need to make sure you are eating potassium rich foods regardless. Fruits and juices are particularly rich in potassium and can provide a quick infusion of potassium.