sue1234

Wow, rereading this thread, and we still don't have but minimal new information 5 years later. And, still no new treatments. Does anyone know a good POTS doctor that focuses on the autoimmune component and actually does something about it???

Firewatcher, so agree with your assessment of the medical system. When POTS hit, I was 46 years old. At that time, the doctors I went to seemed to want to get to the bottom of my health problem. As the years went by, especially now into my mid 50s, they seem to not want to delve deeply. As I mentioned, I quit going to any POTS doctors. This year I just started with a functional medicine MD, and hoping with time to make strides in the root of my issues. It may be a dead end, but I am trying that route. Looneymom, how is Tyler now? I haven't caught up with your story in years!

Hey Firewatcher! I can attest that perimenopause makes everything worse. My POTS, which began 11 years ago, began while in the throes of perimenopause. In the middle of that 11 years, I finally reached menopause. I didn't notice any change in my hyper-symptoms at that time, but I can say a few years later, my lightheadedness is less. BUT, I've been couch-ridden for so long now, I am just soooooo unconditioned that I can't exercise for more than 3-5 minutes without being real short of breath. I cannot do the recumbent bike because of a hip replacement in 2016, and it causes the angle of hip movement uncomfortable. Honestly, when I joined here and read up as much as I could, I became hopeful that the POTS medical commnunity would come along with answers and help. I have not gone to a doctor for POTS in 2 years now. No one has helped in the past. I saw multiple cardiologists, multiple neurologist, etc. Some were "specialists" in dysautonomia, but they were not able to get me functioning. I am so let down with the medical community.

I'm not familiar with this, but would love for you to continue posting on any findings your doctor has, as in treatments and if they work. I love it when a doctor thinks outside the box!

Wow! Glad you found THE doctor that put it all together! I sure do remember you. Can I ask why he thought of Adrenal Hyperplasia? I honestly thought, reading your story, when he said something was up with your adrenals, that the next sentence was going to say he thought it could be a pheochromocytoma! I have a slightly enlarged adrenal per CT scan, and a nodule on the other, and every couple of years a doctor tests me for a pheo and Cushing's disease. So, I am curious about the work-up he did for Adrenal Hyperplasia!

Here I am 5 years later, and still addicted to black tea. Once again, feeling low for the first half of the day, and thinking about how I drink tea every morning. I drink about 40 ounces, in two 20 oz. servings a couple of hours apart. Then, water the rest of the day. Once again, I read an article about the nitric oxide properties of tea, and how it causes vasodilation. I think I read a long time ago that it lowers cortisol, too. SO, maybe I'm creating my awful days by just drinking my teas! I am going to switch to coffee beginning tomorrow, and I'll see if I notice any improvement in a month. I NEED to feel better. I have declined so much this year in my daily energy, that I feel like I can't even do my usual small amount of things that I normally do while pretty much housebound. I mostly sit in my chair, and I need to be able to cook and do things around the house. Not so much because they need to be done anyway, but because I NEED to feel like I can do some things in my limited life!

How promising!

I've taken it yesterday and today, so far. I was prescribed 60 mg. once a day. I took 15 mg. x 2 yesterday, just to make sure I had no weird reaction. Today, I took 30 mg. this morning, and 15 mg. this afternoon. So far, nothing different that I can tell on any front. Possibly it makes me a tiny bit tired, but that could just be me going through a phase not related to the medicine. I usually have side effects to EVERYTHING, so this is kind of strange to notice nothing. Because I am a constipated type, I was hoping it would speed the bowels up, even a little, but no difference yet.

Thanks, Looneymom. I will keep all those benefits in mind when I try it in the future. I will be starting Mestinon this weekend.

Thanks! I saw my doctor this morning and I am going to try Mestinon in a couple of weeks. I'm hoping it works long term.

I am going to my internal medicine doctor tomorrow, who is also a functional medicine doctor. She manages my thyroid meds for me, because they end up making my TSH look low and hyper, but my free Ts in the normal range. She gets that that is my "normal", whereas any other doctor thinks I'm hyper and wants to lower my thyroid dosage. I've tried that before and become so sluggish. Anyway, she is kind of open to trying things, even though I haven't tried anything in over a year. I've come to the conclusion that I think my POTS is most likely autoimmune based. I was wanting to try LDN to see if that would help that aspect. The only thing is I read it can cause insomnia, which I have chronically, so take a low dose of Xanax at bedtime to help. Does anyone of you have experience being on both Xanax and LDN? Also, I would like to see if Mestinon would help mainly my sluggish g.i. system. I stay so bloated, I cannot stand it anymore. It is like blowing up a balloon and then placing it inside my abdomen. Which, is kind of what happens. Apparently I make a lot of gas, but it rarely comes out. I wouldn't mind the bloating except it pushes up onto my rib cage and diaphragm, causing me to be short of breath and tachy sometimes. When I do have a few days where whatever is allowing me to pass gas, I feel so much better(one of the very few benefits of staying home most of the time alone!). I just need something that will allow things to move on through on a consistent basis. So, any advice on which to ask to try first? I may eventually try both at some point. I'm thinking of trying the LDN first, and maybe that will alleviate whatever is gripping my intestinal system and keeping it from working.

Eating is definitely a catch-22 for me. If I don't eat, I get low blood sugar issues. If I eat, I also get low blood sugar IF I don't eat every 2 hours. It's "preventative". Because I eat often, I don't eat much at a time. Mornings are just so hard to get through, and a waste of a half-day.

Thanks everyone. I do take in a lot of salty fluids and almost a gallon of fluids daily. Maybe that keeps me from feeling even worse, who knows! Issie, I tried the various allergy meds and such, and always felt worse on them. I have no clue why.

Just a rant, but I am so tired of POTS. I have issues when all I'm doing is sitting in my recliner(not reclining, I never do). I know it is not blood sugar, as I eat often in the morning knowing it can drop on me. It's not the heat, because I'm running the heck out of my central air. If any normal person felt like I do a lot of mornings, they'd be in the emergency room. I just call my husband on my worst days and ask him to call back to check on me in 30 minutes. It always gets better as the hours go by. I feel lightheaded just sitting, my heart rate and blood pressure are slightly jumping around, mostly higher. I feel out of it, weakish. I go through this about 30-50% of my mornings. I am tired of it! Besides having no energy and no focus in the mornings, I then have to have these episodes to deal with while home alone. It just gets old.

That's great! Are you now going to add in things to see what affected you the most? Keep us posted!

I have had tinnitus for about 20 years, and it preceded POTS. Mine is not pulsatile. You might want to read up on SCDS, or Superior Canal Dehiscence. It is a small hole in the bone in the ear. One of its prominent symptoms is hearing your heart beat, along with other bodily noises, in your ear. More than likely you don't have it as it is rare, but who knows. At least you will be aware of one of the possibilities. But, like others said, it could def be related to POTS. But, being in one ear only makes me think not.

Just to update... I am back to my POTsie self. It happened kind of like Katybug described above. I was clear-headed and my old self for about 3 weeks, then started slipping back into my foggy self. I don't know about the physical part, because I am still building my strength up to walk since surgery. To answer your question Yogini, I did lie down often for about the first week after surgery, but after that, I was back to sitting upright in my big recliner(not reclining). It was disappointing to see the clear mind slip away. The variables that could have brought this about are: IV antibiotics--is their some underlying, smoldering, undetectable infection? Blood thinners--I had one blood thinner injection before when I was in the hospital for a 3-day fast checking on blood sugar levels. Come to think of it, I told my husband when I was discharged that my mind was soooo clear. But, I chalked that up to fasting. BUT, I've had two more 3-day fasting tests(no blood thinners for those), and I did not have the mental clarity after those. Outright anemia--caused me to be so tired, but took iron for a month and ate tons of beef, and the tiredness has resolved. So, wondering about the blood thinner. I wonder about "thickened" blood, and if that might be a possibility? Of course, all having to do with altered fluid status and having to spend everyday to stay hydrated. Any thoughts?

I'm writing this in case I slip back into the POTS-me(which I hope with everything I've got that I won't!) First, I'm not saying I don't have POTS, it's just there is no way to measure it at the moment. 9 days ago I had a total hip replacement surgery. I was born with hip dysplasia, so was glad I made it into my mid-50s before they are needing replaced. I replaced the only one that's been hurting. I had to get cardiac clearance beforehand, due to my POTS, but as I told the surgeon, as long as I'm laying down when you do the surgery, I don't foresee any problems. After the surgery, the surgeon had told my husband he was a little worried about how my body would act, but apparently everything went well. I was in the hospital for about 56 hours, then home. I had minimal IVs while in, meaning they were more at a keep-vein-open rate, because they didn't replace the bags more than every 8 hours or so. Also, I drank water/tea freely, but I admit it wasn't my normal amount, as it was painful to get out of the bed to the commode AND my bladder likes to shut down after surgery, so it takes forever to get a little urine out. During surgery they gave me prophylactic IV antibiotics, and then two more doses afterwards. I was given IV meds for pain and then oral pain meds. I didn't even ask what I had in the hospital. I was discharged home with Norco, anti-nausea meds and Xarelto(blood thinner). I made it through the first few days living on pain meds to help me move. Then I was SUPER tired and weak. I looked up my labwork from the hospital pre-surgery(H&H) was good, then for the next two days after I was outright anemic. I emailed the clinic to ask if I could begin iron so I wouldn't be so tired, and they said yes. So, I began 1xday iron pill. At that time I weaned down to 1/2 the painkillers, and then two days ago, to no painkillers. I am usually a lightweight with meds, usually taking about 1/2 dose of regular people. I was sooooo loopy in the head, like out-of-it, so lethargic and weak and so knew I needed everything out of my system. Yesterday, even though I am still somewhat weak and struggling to maneuver to the bathroom, ect., I said my head feels clear, and I was having thoughts about the usual Easter springtime when my kids were little 20 years or more ago. Today, I feel like my "OLD" self, from 20 years ago. Like, my brain is alert and thinking about all the things I used to do like sew Easter dresses, etc. The "new" me had fallen off into an "automatic" functioning, and then surviving with having POTS for 10 years. As mentioned, I have no clue if my POTS is changed, gone, still here. I can't stand up long enough to really do anything, and then with the slight anemia, I have to build myself back to functioning. So, I won't know for a while if anything physically has changed like my mental has. So, I was thinking. The fluids are not the issue, because I was less-than-normal to now my-normal during this last 9 days. I seriously was wondering if maybe I've had a bacterial infection, maybe in my brain or elsewhere, that the 3 doses of IV antibiotics might have cleared up? Kind of like what you see in kids with PANDAS? I don't know yet what antibiotic I was given, as my return appt. is Monday. Any thoughts on this? I had thyroid surgery 6 years ago, while I had POTS, and did not feel this. I felt good in the hospital, suspecting with the IV fluids, just like this time. I never had IV antibiotics for that. But it didn't hit me a week later with this noticeable change. This is just a rambling story, but the effect is so strong, and I really wonder if it was deep-seated infection somewhere? I have to say, I have have maybe taken a course of oral antibiotics over the last twenty years maybe 4 times, and usually Amoxil, so nothing major. I'm just never sick(that I realize).

That was really good!

I have never tolerated melatonin. I tried it a few times, at varying doses. I can't remember exactly its effects on me, but it did not help me sleep. I really wish it would have!

Because the ERs tend to put you on a lower priority if not life-threatening, why not try an urgent care next time? They would probably give you more individual attention and can do most testing AND give an IV if needed. Plus, way cheaper on your deductible! Just a thought. I don't go to ERs at all anymore. I went twice in 15 years because I had trouble breathing, but nobody knows why. It was from stomach bloating that pressed up into my chest, or that was my "diagnosis" from knowing my issues. It was a waste of time and money, and an embarrassment. I told my husband I will only go if I pass out at home(not normal for me!). I will have to show absolute alarming signs for them to see, even though I may have a ton of symptoms! I can't handle the way they treat me at the ER.

Katybug, I just now saw your post. Sorry! I actually have NO clue why you would urinate more out while increasing your sodium. It goes against the normal pattern and reason for taking it. But, we are all an anomoly, so who knows!

I get constipation in general, where my intestines just stop. The issue with that, for me, is the gas builds up and up, and then it presses up on my diaphragm. I get short of breath and can't get comfortable sitting. Sometimes this lasts for 24 hours, and sometimes, like this week, it lasts for 4-5 days. And, I'm supposed to start my Propranolol! I'm scared it will make all the intestine issues worse which I absolutely could not handle! So, I'm scared to start it. Let us know how it goes for you.

Sounds like the doctors need to widen their circle on what might be possible with this! Good to know on the bloating. I get awful bloating often, and I cannot function when it is at its worst.

Thanks to all for the encouraging words! Lewis, did you have gastroparesis and/or bloating? I have gastritis on many of my scopes, so I guess that is attributable to the gastroparesis. I'm glad it gave you a positive outcome! I am down to this (MALS) and waiting to have autoantibodies checked when they finish the study. After 10 years of researching what is out there contributal to POTS, and this is all the research has come up with!! So, I had the MALS checked, and positive! As I mentioned, it may or may not fix any or all of my issues, but getting some of them fixed would help. I find it odd that of the two things they find could cause POTS, I"m actually positive for one. I find that too coincidental.