kayjay

We've had align and cultrelle - I didn't notice an improvement until udo's choice ( refrigerate or freeze) I actually had a yogurt maker as well- dairy can be hard for some though. I'm sorry to say that store bought yogurt tastes better anyway

Also - are you sure that salt "flushes out potassium"? I thought it was the other way around. Potassium can lower blood pressure and make pots worse.

@Hanice I can't speak about salt tabs because I've never used them. I remember your post about increasing your salt by eating processed food (I think it was Cheetos). I may have the wrong snack food- and if I do my apologies. I personally use natural sea salt.

My apologies to the OP- I'm on my phone at a ball game and had you confused with a "hyper" diagnosis. I'm not sure if you are or not- regardless a sodium increase is a common recommendation for pots patients.

I've been on several and have had one of my children on them. Definitely go for a refrigerated brand. I think you have to find what works for you. I get mine at whole foods- I think it's Udi I'm not home but I'll double check when I get home.

Hanice- many of us have been advised to increase our sodium. It does not "damage your kidneys". Low sodium actually can be very dangerous. If Mayo clinic tells me to increase my sodium intake- my response will be "by how much?"

Salt has been huge for me. I don't take the tabs though. It's not true that a high salt diet =high blood pressure. You can have high blood pressure problems if you have edema. Salt lowers my blood pressure. A good nephrologist can explain the connection between salt and blood pressure. Like you I am hyper pots- as per mayo clinic. I salt my food and drink salty drinks. Hopefully you can work towards that as the salt tabs can be hard on your stomach. I have a more than one sea salt grinder in my kitchen. I do know the last time I went into the er- my sodium was low. I can't get lazy about it. Give yourself time and suddenly you will realize that you aren't looking for a bathroom every 30 min. Consider monitoring your "free water" intake. I can easily drink too much water. Even if your salt intake is high, too much water will lead to low blood sodium. Mayo told me to limit plain water to 50% of what I drink. The difference is huge.

Absolutely check with your doctor. I also would look into celiac disease and gluten intolerance- as well as accompanying nutritional deficits. In some ways pots is a diagnosis of exclusion -meaning doctors can't necessarily find a "disease" so we are labeled by our symptoms (a syndome- not a disease). I have POTS because I don't have MS, Parkinson's, dehydration, adrenal gland tumors, severe anemia etc. (hopefully this makes sense) It certainly could be pots, but it also could be something else entirely. Best wishes- I hope you get some answers and are feeling better soon.

I also went to mayo clinic (Rochester). When I do what they told me to do-I do better. Nadolol took some adjustment but I think it's been a great medication. Compression and salt are important as well. My gi issues have resolved but I took myself completely off of gluten, I take a specific probiotic that helps me. If I can give you some advice (sorry I know you didn't ask) it would to be patient. I do sometimes forget to follow their advice. I don't have to take salt tabs but I do have to keep my sodium up. Dr. Fealey recommended V8 in the morning and keeping my water drinking in check. I'm always thirsty and drink too much water. When I limit my water and increase Gatorade, V8, and pedialyte (which I still don't know how to spell). To encourage you, I am much better than I was when I was diagnosed. At that time I couldn't sleep without waking up in a puddle of sweat, to use the bathroom, and often in panic. I still take sleep meds, but last night I didn't wake up at all. Usually these days I'm only up once or twice. I have gotten rammy and messed myself up. I read here about Wellbutrin for example (apparently dr. Grubb uses it) and got a pa at my ob/GYN's office to let me try it. It was pretty horrible. I'd like to be a hare- but in terms of my recovery I'm a tortoise. Obviously we are not the same but it's seems like my nervous system heals very slowly.

It's not uncommon for me to have hr's in the 40's if I get up an move around it bumps right back up. I have had episodes where my hr plummeted and my blood pressure got very high. I felt a horrible sense of "doom" the first time it happened I just made myself go to bed. The second time I went to the er. I had low sodium which may or may not have been irrelevant. Nowadays I'm much more careful about keeping up my salt intake.

This is a symptom that is much better for me. I don't take them now and they aren't for everyone, but I think Klonopin was helpful. I have problems with smells in general. Laundry soaps, candles, unwashed hair, BO, cow manure, cooking smells. If there is a scent you can tolerate, I would consider having that smell on a scarf or the crook of your elbow. Last year I went to a baseball game with my family, the smells were almost unbearable. I had my good smelling scarf with a comforting scent. I made me feel less ill from the sausage sandwiches that were being consumed in the row ahead. Life smells are everywhere so I need to have something with me that I like the scent of if that makes sense. I often wish I couldn't smell at all I also have no problem at this point with wearing earplugs. My husband gets me little foam earplugs. We went to an outdoor concert this summer and I'm pretty sure I was the only one with earplugs. It really helped. I would absolutely wear them to church. As for the overload, I have a very quiet life and feel like I get a break at home.

Is it possible that the Verapimil helps your migraines? I think it is a vasodilator. I have a script for a calcium channel blocker that is similar for my reynaulds. I don't plan to take it because of my POTS- maybe if I get desperate. .

Can you encase the mattress? Ours is in a zippered cover. It's for dust mites but it is waterproof. I put my mattress pad on over top. I hope he is better soon! Very scary

What's interesting to be is that I feel like garbage the day after an epson salt soak. It took me a long time to connect the dots. My Bp tanks and I grey out. I'm "hyper" pots and believe that my extra NE is a compensatory action. Very interesting Alex. Thanks so much for sharing and I hope you are well!

The only thing that helps me with this symptom is increasing my salt. I'm not sure if you've had your sodium levels checked but you may want to consider a simple blood test. I really try to limit how much water I drink. My neurologist told me that only 1/2 of my fluids should be plain water.

KareBear- you are not an outsider! I'm glad to have you on here and your doggie is adorable. You also are not alone. My body temp is usually at least 99.6 to 99.9. I have always suspected that it was from the "hyper" action. I get very sweaty and then feel cold. I am on a beta blocker and I think it is helping. One more thought because I was just talking to my mother about this today- sleep is huge! Make sure you talk to your doctor about not sleeping. I used to barely sleep every night and I would wake up in a disgusting puddle of sweat- freezing. I do take medication to sleep.

Alex- I'm sorry that you are suffering. Most people your age are not going to understand what you are going though.I just wanted to encourage you that it's ok to focus on yourself now and worry about "catching up" socially later. We moved to a different state right before I had a major crash which led to my diagnosis. I'm making an effort to be more social because I am feeling better. There may be some kind of chronic illness support group for teens that you could find online? I realized that many people with other conditions understand how I feel. (((hugs)))

I would tan occasionally for the positive health benefits. I have had low d- but the only tanning place near me has stand up booths. I did want to chime in about health risks. I know 3 people who have had melanomia. They all are not people who ever tanned. My college roommate had it on her toe. The other two women had it on their thigh. Something else is going on besides sun exposure. My skin and health in general are better when I've had sun. It decreases my pain and elevates my mood. I'd be more worried about the ingredients in the tanning lotions and in sunblock than the actual "tanning".

I wonder if you had an allergic reaction? I don't have any issues with nutmeg, dill, or parsley.

I should add the the hyper pots diagnosis is properly done with a blood draw. They stick you and have you lay down in a dark quiet room for 1/2 hour. Then they take a blood sample. I was permitted to walk about or sit in the waiting room for a few minutes. (I think it was 10 min). A second sample is taken.

I have hyper pots diagnosed by Mayoclinic in Rochester Minnesota. I believe they estimate about 5-10% of pots patients are hyper. They do not test during a tilt table test. I would imagine that the stress of a tilt table would increase any potsy person's adrenal hormones. For me the thought is the excess "fight or flight" hormones are a compensatory response. I have high and low blood pressures. During my tilt table test my blood pressure spiked and then fell and at some point it stabilized somewhat. My heartrate increase was close to 100bpm. Let's just say I have a "robust" response from my good old adrenals. I think it's unusual to have hyper pots without at least episodic high blood pressure simply because of the the effects norepinephrine has on the body. My blood pressures do not stay high. It is normal for anyone's blood pressure to spike during activity so don't worry too much. Olympic weightlifters for example have extremely high blood pressures when lifting. I hope that you are able to get some good answers.

Long acting beta- I'm not sure that they are a recommended choice for pre-pubescent boys. My understanding is that betas are ideal for hyper pots. Some people take them for high anxiety situations such as public speaking.

I have the raynaulds, gi, dry eyes, trouble swallowing. I also now have negative Ana's. I wonder if you would test positive for "flare" after being in the sun. I don't know what I'm talking about- its just a though. My friend with lupus was diagnosed after a long episode in the sun.

Really sorry that you have lupus. I agree with Rama- many of us have has positive speckled ANA tests but don't have lupus. I had a positive speckled test almost 15 years ago.

It was long coming and I mean long. I'm not sure if it tools months or years for the beta to work. I'm on nadolol but I cut pills. It seems like often we need a small dose. I just wanted to mention that betas made me feel worse for a long time. I'm glad I stuck it out. They aren't a fix but with my high Bp episodes I'm convinced that its a good idea to take them.