StayAtHomeMom

I notice the difference in about 30 minutes. Especially when I feel awful. I noticed the tingling is less when I am more active. At first I didn't notice the difference (never had BP issues) but over time when I didn't take it I would notice I didn't take it or I would notice when it was wearing off. At this point I take 5mg when I wake up for the day. And on a day I know I am going to be active I take a second dose after 5 hours. I almost never have to take the 3rd dose my doctor says I can have. If I try to be active without it fatigue sets in and I can barely function. With it I can work most days and my life is a little more normal. As long as I take it slow

I am curious, have they checked you for the adrenal secreting tumor? Pheocyrtoma I think. Sorry I can't remember the name this morning. I haven't had my jolt of caffeine.

Good luck. I am not sure if you have side effects from it. I get the tingles (mostly in my scalp). Even after a year I still get it most of the time for up to an hour while it is in my system. The first time it happened it really freaked me out but generally speaking it is a nuisance more than anything. Just wanted to warn you. My doctor doesn't seem concerned but if it happens to you make sure you let your doctor know.

With doctor's permission it is possible. I take up to 5mg up to 3 times a day. Doc let's me adjust as needed.

I would try whoever is our POTS specialist. You said you have tried medications. Do you currently take anything at all that could lower it and have you tried midodrine?

First of all venting is good for you. Especially on here where we have all been in similar shoes. Second I have a question. You said you have had GI issues. And you do the paleo diet. Does the paleo diet allow carbs? I ask because I recently started keto (to lose my extra weight) and I noticed my GI issues have calmed down greatly. I still feel full easy but no nausea, diarrhea has eased (until I eat too many stover's sugar free chocolates ), bowel movement have regulated, and I don't think I have had heartburn once. I found it to be an interesting side effect of my diet and was wondering if other diets have helps as well. Not sure if it is the low carbs that help or something else.

I agree. It's like I forget how bad I feel without meds

I could see long term use causing an issue but not so sure about short term use.

I took a burst of steroids (doc thought it may help my breathing). When I came off my body hurt so bad I was shocked. It dulled back into the background after a few weeks but I never realized how bad it really was until I didn't have it. And honestly NSAIDs have never really touched the pain unless it was through the roof. I was 29 at the time. I tried a second burst after my diagnosis. It was not as high and I felt no difference. I have recurring rashes bad this year. My symptoms point to an autoimmune but I can't find a blood abnormality to prove it. My allergist said don't worry about it. It doesn't matter what kind they treat them all the same. But I have to know the answer. And different treatments for different autoimmunes in my research. I am planning on a rheumatologist appt after my son gets tested to rule out or in hEDS. My boys and I are apparently very flexible (thought it was normal the everyone can reach all the parts of their back) and I suspect my mom is hyperflexible as well (hard to tell now she has RA). I hope for the autoimmune because I would love to get rid of my POTS. But my research shows there no help if it is hEDS.

New diets can be hard but sometimes it has unexpected results. I started the keto diet about a month ago. I am losing weight and inches (very excited) but also my bowel movements have straightened themselves out. I am very excited that my bathroom trips are less erratic. I am glad that they found one thing to help you out. Sometimes just getting rid of a symptom or two can make the rest more bareable. Hope you heal quickly

I have not been diagnosed with an underlying cause yet. But in my research it shows if you treat the underlying cause POTS should resolve or at least lessen. I am hoping to find my underlying cause this year. I suspect my oldest son has POTS and after he gets tested (in Dec) hopefully it will provide some clues. Autoimmune runs heavy in my family but my ANA keeps coming up negative so I suspect my underlying cause is something not treatable. I hope it will be though

In theory sedatives could. I see a lot of people with hyperPOTS take clonadine (sorry for the spelling). Personally a strong jolt of caffeine in the morning helps my brain. But even then my brain isn't what it used to be either. Some days are better than others though. Some one mentioned wanting to try Ritalin and I have heard of some people swearing by that. I don't feel like the benefits I could gain would outweigh the probable side effects I would get so I just stick to what I have been doing. I am better than I was 3 years ago and that is what is important to me now.

For me, I remember being like 12 and would get black spots when I would stand. Mom brought me to the doc and she dismissed it as dehydration. And then when I was 15 they taught me how to take my own pulse in health class. It was 98 after sitting in class for over 45 minutes. I dismissed it as being a smoker. (I started young). Now my oldest son is 15 and he has symptoms and signs. He gets tested in December so we shall see if it is possibly genetic.

Is there something common he is eating before bed? I have noticed since starting my keto diet (due to weight issues) my bowel movements have gotten so much more regular. I don't have celiac or anything GI related but not having the carbs has made such a huge difference it makes me wonder if there is something there.

I have not had major brain fog issues while on it. When I first started I noticed it was like a veil being lifted. That being said I still have some disconnect moments. Like not being able to find a word or name. But even then it is so much better then it used to be.

I am only 3 years in. I have hit the stable spot. That being said I wonder if I haven't actually had it much longer and it just go drastically worse when I hit 30. My oldest son gets tested in December so maybe it will provide some insight into that possibility. I use metoprolol and the beta blocker makes a huge difference. I hope you continue to get good results from that.

It sounds similar to me. I would get another TTT and schedule to see a specialist or a doctor willing to learn. I did a poor man's tilt table every day for a month prior to my diagnosis because the first cardiologist I seen dismissed me without properly checking by TTT. I take a beta blocker that helps with my heart palpitations. I am not sure if PVCs are the same thing. I do occasionally get skipped beats but it happens way less on my Beta Blocker. My heart in general feels better and that in turn I think helps other things my body does. All my cardiac tests were normal so that helps too.

Propranolol caused my breathing symptom to be worse (no asthma). My pulmonologist suggested metoperlol because it is cardiac specific. So I told my cardiologist and he started me on it. I take the 25mg metoperlol tartrate 2X a day with an occasional extra if my heart palpitations are really bad (had to add the occasional one for the past 6 months). I tried the succinate for a month (it is a once a day) but right now I like the more control. My specialist tried to put me back on the propranolol but I refused. He says it would work better but my breathing issue is my 1st and number one issue so I don't want more issues. My hubby was given a list of beta blockers to stop taking before an echo/stress test and there were over 50 of them, so I am sure there are multiples that shouldn't effect your breathing. My metoperlol helps my tachycardia and heart palpitations. When I first started it helped my other symptoms to an extent but my midodrine helps my other symptoms more.

I have never used laughing gas. I get the non-epi injection as well. My dentist said the epi helps the bleeding and it helps the medicine kick in faster. So they adjust for it.

My "flares" are usually during my period, or at least close. I am currently dealing with it now. My symptoms generally get worse and I have to take it easier than usual. But honestly you get used to how your body works after a while. I genuinely can't remember a "flare" that was not from my period besides when my symptoms first started. And nothing was as bad as that first year. I think my POTS is relatively mild compared to most people on this forum though. Vitamin water helps me out a lot during the times it is worse.

When I first got sick I was having right shoulder pain. I couldn't lift that arm to lock my front door without it hurting something fierce. Chiropractic help put it where it needed to be plus cold laser therapy helped me to be able to use it again within a month. I have not had issues with it since (over 3 years). My body is a little odd. I can pull all of my joints out of socket. So body pain is pretty normal for me. It really hurts when the muscle or tendon gets inflamed. Chiropractor has always been able to get it moving so it doesn't hurt as much. If the pain is abnormal for you see an orthopedic so they can do tests to make sure what it is. It is possible you damaged it without knowing. Personally I never have just because it is normal and my chiropractor can usually fix it.

Yes that is how I am. I have always felt better in the morning and worse in the evenings. Originally I hesitated on POTS because it seems to be the other way around for most people. After you eat does your stomach feel bloated like it is pushing into your diaphragm making it harder to breathe?

If you every find the reasoning please post it. I am 3 1/2 years of "air hunger" that is varying intensities and no answer. I have learned to deal with it but the first year and a half was really rough. My shortness of breath doesn't bother me much anymore as long as I don't fight it or do multiple things that involve breathing. Like walking, talking, and smoking at the same time. I can do one, sometimes 2 and mine is tolerable. If it gets really bad and I start hyperventilating from fighting to get a deep breath (I don't feel like I am but my fingers/ nose will go numb) then I just go to sleep. I wake up and it is usually at a better level.

Are you able to get a full satisfying breath? I ask because that sounds like me when I first got sick. See if your regular doctor will refer you to a pulmonologist. Are they giving you inhalers or breathing treatments? Those made me feel worse because they upped my HR. Try to relax and wait to see the pulmonologist before you freak out too much. Your elevated d-dimer may not have been but a few points which is why they aren't worried. If it keeps up keep going back to the ER every few days or so. But relaxing is going to help the most.

Hmm... I know sometimes I feel my heart beating in other places but nothing so specific as you describe. Not sure what direction to point you in. Maybe someone else will. I would keep asking different doctors you see though. Maybe one will have a viable answer.