kayjay

Mayo would not agree with that. Dr. grubb may have been talking about mast cell. Sweating excessively, high blood pressure and high catecholamines are hallmarks of hyper. You really need a proper blood test.

My blood pressure numbers almost aways go up when I stand.

It's an adrenal gland tumor that causes many of the same symptoms as hyper pots. It's pretty rare but fixable. I've not heard of anyone being tested for hyper pots during a tilt table test. Its done separately. Most pots patients do not have hyper pots.

I like miso soup and V8. nunn is enjoyable and convient IMO.

Generally speaking, the "hypers" I know tend to have at least episodes of high blood pressure. The adrenal glands over react and the resulting "fight or flight" hormones cause a raise in blood pressure.

My diagnoses include hyperadenergic Pots and Orthostatic intolerance. from Mayo clinic. My blood pressure is normal while seated but raises as a compensatory response. Hope that is helpful. Has a pheochromacytoma been ruled out?

Yes. My adrenals dump "fight or flight" hormones to counteract the fall in blood pressure. We are a bit less common but the adrenalin will give you high Bp readings. I have hyper pots. The good news for you is that a beta blocker may be very helpful.

Mold made me very sick. I'm allergic and allergies are an immune issue. Absolutely a trigger.

Does this coincide with episodes of higher BP? Could it be related to lack of sleep? I think I can relate to what you are saying. I'm a happy person by nature and rarely get angry. Adrenal surges make me feel very irritable.

I'm going to plus one on Kim's comments. I'm struggling with terrible dry eye. I have 2 humidifiers running in my bedroom all night. I use ointment at night and drops during the day. They must be free of perservatives or my eyes will actually get worse. I'm probably not going to tests for Sjogrens just because I don't care about anything that doesn't have a specific treatment.

Actually, I'm going to suggest that the postulating in this thread could be dangerous. A hyper pots person with high blood pressure absolutely should follow the advice of their doctor. Threads like this scare me. Nothing will send me to the ER faster than low serum sodium. Please please take the advice of your cardiologists. If you have any concerns a nephrologist can explain how salt works.

It's not so simple- let me start by saying a high salt diet is good for my blood pressure. You can have high blood pressure and be essentially dehydrated. A low salt diet can actually cause high blood pressure as it stresses the kidneys. This topic comes up a lot. Granted most POTS people have low blood pressure so in theory the idea that increasing salt will increase blood pressure seems logical. It's not how our bodies work however. I believe confusion exists because people with edema and certain heart conditions are often put on low salt/ low fat diets. Forgive my abrupt post- I'm not on very often and this caught my eye. Nothing has given me more problems than electrolyte imbalances. It's pretty easy to get a 24 hour sodium urine test or a plasma test if you are concerned you are taking in too much salt. The idea that high salt = high blood pressure isn't true. Salt will help keep you hydrated however. I haven't met a potsy yet that hasn't been encouraged to keep salt levels up. I was diagnosed at Mayo clinic and all 4 visits over the past 5 years have included conversations about salt.

It takes time to adjust to a beta. It made me worse in the short term but absolutely helped with my hyper pots. It's certainly not a quick fix. Your body will adjust to the fatigue. I had more episodes of low Bp when I started the beta blocker. You are supposed to start with a low dose and adjust slowly. You also shouldn't suddenly stop taking it. If you decided to stop definitely check with your doctor and ask how to do it safely. Nadolol does more than help with heart rate. It helped with my "fight or flight" surges, sweating, chest pain, and shortness of breath. If I am remembering correctly it took a few months for me to completely adjust to the medication. I hope it helps you. I can't speak to the stockings. I think they are helpful but uncomfortable.

I'm also on nadolol. I have taken 40 mgs but for some time now I've only been taking 10-20 mgs per day. I don't bother splitting the dose anymore because it is a long acting beta. I recomend a pill cutter. If you need to adjust the dose. Over time I think nadolol has been the most helpful medication.

I don't have color issues but I do have vision issues. Mostly I'm having trouble with light. I do get auras with migraines sometimes. It's scary but I do have lots of eye issues. So far they have been temporary.

Yes- I take provigil. I've tried nuvigil 2 times but had bad reactions- could have been a coincidence but I'm not willing to take it again. 100mgs of Provigil.

So glad you are seeing improvement. It seems wise for you to hold off as long as you can. Having a 3 year old niece with diabetes and RA was eye opening to me. No one in my family took medication. I'm not sure of any of us ever had a cavity or a broken bone. Without medication my niece would be dead! Dead at the age of 3. Now she is in middle school. If you get sick enough you change your mind about medication. Hopefully that will never happen. Sadly medication that is strong enough to help can be strong enough to harm. I get the hesitation but I'm thankful for my medication. I'm a better wife, mother, friend, sister- etc because of medication. Best wishes- and consider a b-12 check. If you are deficient apparently shots are life changing.

Also- I have weaned off many meds. Something that helps now may not be necessary forever. As for b-12 if you can get your vitamin levels checked it may be worthwhile. I'm a huge believer in a healthy diet- just how I was raised. If you a missing something in your diet or not absorbing nutrients you can feel crummy for sure.

Wow- I just realized how my perspective has changed over my lifetime. In my 20's I probably would have been proud of the fact I didn't take medication. I wouldn't expect someone not wear their eye glasses if they have a vision problem. I am a former "natural is best" thinker, but medication exists to help. It's not a sign of weakness or not "fighting" hard enough. Sometimes taking medication is the smart thing to do. Medications can save/prolong life. Side effects are something to be considered- but it would be outright FOOLISH for me not to take medications. My quality of life has improved. I respectfully disagree with the suggestion that medication categorically interferes with healing. The opposite has been true for me. To the OP- most likely I will take medication for the rest of my life however I am a cautious consumer with everything that I put into my mouth or onto my skin.

I do get the vaccine. I've never had a problem with it. I started getting it on my doctor's recommendation. I haven't had flu the since I've gotten the vaccine. Before I was diagnosed I had the flu 3 times and "walking" pneumonia twice. I've always had jobs where I worked with groups of people and I have children. IMO nothing is worse than pots + a fever.

Yes! My only advice is to avoid Chilblains. They do heal but it is pretty uncomfortable. I haven't had them for a few years. I prefer being barefoot but ive learned the hard way- when the temp falls I wear sheepskin boots around my house. I have heat packs I highly recommend socks like smartwool. Right now I'm wearing smartwool socks and winter boots in my living room. Also I have to be careful with handling frozen food. Also a steroid cream can help them heal faster but long term it's not a good option. They thin the skin over time. My doctor prescribed me a small dose calcium channel blocker. I'm too chicken to take it though. Vitamin D deficiencies seem to make them worse.

I didn't lose weight on a gluten free diet. My teen is also gluten free as well. Neither of us are trying to lose weight though. We eat carbs, protien and fat. If I drop weight (which has happened to me before) I increase the amount of cheese and nuts I eat. Milk shakes are not out of the question either. With growing children keeping up caloric intake is important. Remember to that a lot of gluten food (breads and cereals) are vitamin enriched. Most gluten free foods are not. Vitiamin supplimentation is often recommended for those going gluten free. So yes- you can gain weight on the gluten free diet. I'm not trying to lose or gain and I've been able to stay pretty steady gluten free. We eat rice and potatoes instead of pasta and use gluten free bread.

This has come up before. I don't take salt tabs, but I do know that FOR ME . Mayo was very clear on limiting my free water and increasing my salt consumption. I will say that it's pretty easy to get your soduim levels checked. Mine are consistantly low. If I forget to use enough salt I end up in the ER.

My blood sugar and a1c are great. I've been on nadolol since 2009. I was diagnosed with hypoglycemia in college though a glucose tolerance test. I do eat frequently- but low blood sugar for me doesn't seem to be linked to the beta.

Also gluten free- "presumed" celiac but no scope. I can tell you that I was told I had IBS- gluten free has almost eliminated ibs syptoms. I have dysautonomia related gi issues at time but I have been able to correct nutritional deficiencies. For me a gluten free diet has been one of the best decisions I've ever made. I'm excited for you because changing what you eat is very doable!