kayjay

I have hyper pots- I can have some caffeine but I cannot tolerate licorice. For a few years I wanted nothing to do with coffee. Now it depends on the day. For me it is a real "listen to your body thing". I bought some tea that has some licorice in it. Oops. The second time I drank it I realized that it needed to go into the trash!

It gets better- I'm sorry that you are going through this. I also have hyper pots. I stopped klonopin after several years of taking it. It does get better. If you can ride it out you shouldn't be in danger. It JUST feels very dangerous. As a side note I'm much better off of these types of drugs. I thought they helped me at first but I never want to take them again. They interfere with short term memory and can increase dizziness.

Looney mom- I thought you gave great advice. Not scary at all I think it's comforting to make sure you have a solid diagnosis. Another thought for Charlotte- have you been fitted for compression? It's supposed to make a big difference over non- "custom" compression. I was told to get fitted in 2009. I still haven't. I wear over the counter compression lol! I'm wondering how much better the properly fitted ones are?

Lol yes ... So true. Plus one on the exercise bike. Mayo recommended a recumbent bike and I tolerate it well. I kept having issues on the elliptical... Pots can do that

Charlotte- if you re-read what you posted, "In their studies THEY HAD TO INDUCE autoimmune disease, the salt played an additional role". "Regev also says it is far too early to say people shouldn't eat salt because it leads to autoimmune disease". WOW - scary info being thrown around on this site recently. A mouse study. Again it may be wise to get a urine sodium level before making a salt decision. Correlational research again. You can correlate anything peeps. Shoe size and intellect, number of pets and number of speeding tickets, windspeed and the pimples on a monkeys butt. It usually means nothing . . Eat salt, don't eat salt, chew on pillow stuffing, lick door knobs, don't lick door knobs- lets not jump to conclusions and scare people ;D I totally get where you're coming from. I essentially "cured" my ibs by eliminating gluten. I kinda want everyone with an ibs diagnosis to try gluten free. Ps. Salt tabs are proported to be hard on the stomach. I've never used them personally. You may tolerate sea salt better if you choose to try that again. You know your body best- good luck! Sorry about any typos etc. I really should get on an actual laptop with a normal sized screen

Is this abstract based on animal studies where the animals had no kidneys? I appreciate you sharing this. I'm sure none of us would go against our doctors suggestion baised on this "information". These two doctors (same "study") is repeated in various publications are not neurologists. They seem to be theorizing that Bp control is a brain action- not kidney. Maybe I'm really stupid and missing something here but my Bp issues are dysautonomia related so I've always assumed it's a "brain" thing. I'm having trouble making sense but the BU team are not pots researchers. I can't find information on how many patients they are even talking about. ( human or animal). Everything that I can find seems to be linked to renal failure patients or animals that have had their kidneys removed. I personally wouldn't be comfortable using this "evidence" to make a decision AMA. It's interesting but irrelevant. Thankfully my kidneys have not been removed and are healthy I'm done with the whole salt conversation. High salt- low salt... Whatever works for you. I'm great with my mayo clinic doctor's recommendations. I just wouldn't want someone to lower their salt levels without checking with their doctors ... especially based on anything posted here. Best wishes... And please pass the salt shaker .

Something that is interesting to me is that " salt is not all the same". It's very much like sugar is some ways. Not all sugars are the same. I don't consider the "salt" in processed and fast foods to be healthy. I do keep a grinder of sea salt on my kitchen table though.

Thanks Alex!

I do not "salt load". I try to keep my water drinking down to a reasonable amount. I drink electrolyte drinks, v8, and I salt my food. I actually don't love salt and have to remember to add it to my meals. I do not retain water but when my rings are super loose I know to up my salt. I can't stick to a certain amount of salt each day because my need for it changes based on how much I sweat and how I'm feeling. I'm sorry I can't answer you very well. Some days I have LOTS and some days not so much. I generally don't eat any unhealthy foods (excluding sports drinks and occasionally potato chips ). I'm gluten free, and was raised on a healthy natural unprocessed diet. Poor diet (or excess salt) was not a factor for me getting sick. I was the kid who got the " perfect school attendance award", never broke a bone, never had a cavity, and had the energy to play any sport I wanted. Makes me thankful to my mom who was very strict about what I could eat. I got way off topic- sorry- but I think where I'm going is that most of my salt comes from foods naturally or I add sea salt.

I driven and flown. It's a long trip either way. I wore compression on the plane and wasn't traveling alone. I don't have oxygen issues- I just feel short of breath. It's a huge commitment and I'm not cured- but I have peace of mind. I was properly diagnosed.

Thanks so much Issie- You were sweet to take the time to share I am so surprised that the jump was made from Fast food to salt! I don't eat fast food (or feed it to my children)... But not because of the salt. My pots is most likely autoimmune and I have a niece who was diagnosed with type 1 and ra before the age of 3. Salt was not an issue- maybe a genetic tendency for autoimmune though

I'm sad to say that I have zero information to give. I just wanted you to know that a few months ago I was in the car with my husband and son. I suddenly felt as if I was going to die. As soon as my son was out of earshot I called my mom and told her that I might need to go into the er later. My heart rate was about 40. I layed down for an hour or two and was ok. I do have episodes of bradycardia- but it's rare for my hr to go below 50 unless I'm sleeping. Usually when I feel panic my hr is closer to 150-200 sitting. I'm so sorry you went though this. Thankfully in my case the low hr with bad symptoms has only happened a few times. I have no idea why it happened to me, but I know it is horrible.

Can you contest the decision? I realize it's so hard to advocate for yourself but I hope you will. I've had to fight with my insurance co. It's unpleasant but worth a phone call? Good luck!

Please please please read the original work! It looks like all of subjects were hypertensive renal failure patients. I'm not saying anyone should salt or not salt... But assuming that additional salt will raise your adrenalin is an *** ... ump tion! I'm hyper pots. As in hyper diagnosed by a top endocrinologist at Johns Hopkins with a pheo. I dump so much adrenalin (cause I have hyper pots) that I will test positive for pheo. I spent a week at NIH while dr Pacek looked for my non existent pheo. I'm so sorry to repeating myself! I'm so worried that a new person will read this salt stuff and hurt themselves. Yes...very low salt kills! Anyway I'm hyper...did I mention that I have HYPER pots . Lol. Mayo clinic Rochester told me to increase my salt. I did and still do, and it helps. Please get a 24 hour urine sodium check before you increase or decrease salt.

I can't see what Rama posted ( It makes sense to me to have a urine sodium check. I've always been a healthy eater and a never ate much in the way of salt. Particularly processed foods. I actually don't like sweets much and growing up desert was fruit. It's unnatural for me to salt my foods. Something for some of to keep in mind is that we often are thirsty (or it's a syptom for me). Even if your blood volume is normal, drinking copious amounts of plain water can be a bad idea. I'm supposed to only drink 50% plain water. I feel best when I drink pedialyte- which I think tastes nasty btw. A 24 hour urine is a good idea to see if you need to tweak your salt .

I've taken Lexapro, and Cymbalta. I wouldn't be afraid to try either one with your doctor's ok. Neither worked for me potswise but Cymbalta was helpful for fibro pain. I'm sorry that I can't be helpful about any others. My only suggestion would be is to consider taking a small dose at first. You can always increase as needed. For many drugs I require a smaller dose. My neuro told me that this is typical for pots patients.

Hi Alex - I just wanted to let you know if it is the study from those 2 docs from Boston- they are referring to patients with high Bp and water retention. Your advice to check with a doctor is spot on. I can't find any actual evidence that high salt increases adrenalin in either "normal" people or " pots people. I'm a hyper potsy and mayo told me to salt. If you are retaining water the salt may be a no. But there is no evidence that that increasing salt will increase adrenalin. Hope this helps someone.

Is this the doctor that you told your father had a pheo? You might want to get your medical records and see what info is in there. As you know it's not uncommon for doctors to think potsies have a pheo. I was misdiagnosed with one myself. If your records say falsey that your have a family member who had a adrenal tumor it may be a real problem for you in the future. Even if you switch doctors, they will still look for a tumor based on family history.As for the salt- I'm sorry you felt so poorly this morning. It's pretty easy to do a 24 hour urine to check sodium / potassium levels. Momtogiuliana gave excellent advice. Electrolytes need to be kept in balance. You could try drinking v8, or pedialyte which contain potassium and salt. Hope you are feeling better!

My doggie- love your Corinthians siggy. One of my favorite passages. Plus + on Mayo being my best medical experience. I left with a definitive and accurate diagnosis, a treatment plan, and more hope than I had experienced for 10 years.

I was there for a full 5 days of appointments the first time. The second time I went I believe I was there for 2 (or three) days. I went for the third time in February and was there for one day.

It took me 3 months to get into mayo. One nice thing is that you are not a lab rat. I spent a week NIH- my roommate had a pituitary tumor. After reading your post I think it makes sense that we were together. I would not go back to NIH period. It's a different outlook. I'm very leery of research oriented medical care at this point.

I'm also in pa- I am a mayo clinic fan. I have never been to Vanderbilt but I've been to Hopkins many times. If I needed a neurosurgeon I'd go back to Hopkins in a heartbeat. Otherwise I'd do to mayo clinic. Very interdisciplinary- which I needed.

Thanks Alex - my allergies make my pots worse so I was considering one just for my over all health. I tend to be a shallow breather too.

It's a device that holds sea salt and you inhale the "vapors" over it. I use a salt sinus rinse for my allergies and it works great.

Have you ever used one? Opinions please.?