futurehope

I can relate. I take after my father who had most of his hair when he died, and I look ridiculous because my hair is thinning. It is so depressing, worse than POTS sometimes, because it DOES make you look older and sickly. What I do is take 60mg of biotin once in the AM and once in the PM. This doesn't make the hair grow back but I feel like I'm doing something good. Make sure you're getting enough protein in your diet. I went to a very good stylist to give me a shorter style and good color. The shortness keeps me from pulling more hair out and the nice color is a distraction from seeing what is going on. Your iron levels and your thyroid levels need to be checked. Also, beta blockers and some other meds can cause hair loss. Autoimmune conditions can cause hair loss. If you have poor absorption in your gut from small intestine bacterial overgrowth, or you have Crohn's or anything that affects absorption of nutrients, your hair will be affected. If you have recently been through trauma, such as a bad POTS spell, or surgery or illness, this can cause hair loss temporarily until you recover. If you can afford it, you can go to a dermatologist who will biopsy your scalp to see if there is anything abnormal showing under a microscope. And in my uneducated opinion, I'm convinced it is a combination of the above. POTS must be doing something to the hair follicles in my case. I feel for you. Hair means a lot and it has been a major adjustment for me so I understand.

I suspect the change in the BI (bioelectric impedence) had to do with your hydration. On another subject, I find it interesting that you refer to "flares" and the opposite, which I suppose can be called "good days". I do not have "flares". In my case, whatever doesn't work properly always doesn't work properly. POTS for me is a chronic disturbance in the functioning of my body without "remissions" or "flares". I enjoy my life, though, and have become used to my malfunctioning body since I've been this way so long now. I sort of know what I can do and what I can't do and what may happen as a result. Yes, some days seem better than others but I cannot really identify a "flare". I'm in a permanent flare because I cannot adjust to gravity. Just a sidelight on the terminology used to describe us. Sorry to derail the thread. Carry on.

Thanks for the ideas. I'd rather use natural stuff anyway. Everything can be rather expensive and only used once in a while.

Yep, I'm off to put the ice on. Can't wait till this additional stress is gone. Maybe another day or two and I'll be fine.

I'm doing both an antihistamine cream and the cortisol cream which is prescription strength. I cannot believe how little effect the prescription cortisol is having. Usually, that does the trick fairly quickly with me. I really need to take 2 benedryls now but I do not want to ruin my day by feeling so weird from the pills. I think I'll try to hold off until bedtime. The itchiness is mingled with a burning sensation. Other than having poison ivy, this is the worst reaction I've ever had and I don't think my husband or anyone else got anything like this. My immune system is messed up, I think.

I think I have about 4 bug bites near my right elbow. I say bug bites because it happened rather quickly, unlike a delayed poison ivy reaction. Also, they look like bites, not like blisters. I am amazed at my allergic response. The rear part of my arm looked last night red like I burned myself. The skin felt very itchy and too tender to touch. The bites looked like ugly big bumps. I looked like I had leprosy back there. I know it's an allergic reaction because I took 2 benadryls before I went to bed (out of necessity so the itchiness would not affect my sleep for a second night in a row) and two more 6 hours later and the skin looks less red today. I cannot believe the severity of my reaction to bites. Does anyone have some insight on this? Does it mean my immune system is overreactive? I would stay on the 2 benedryls every six hours except it's doing a number on my POTS - I'm dizzier and sickish feeling from the medicine, but my body obviously needs something to stop the allergic reaction. Anyone have similar problems? It makes me wonder if my faulty immune system is what's causing my POTS?

I live in Baltimore. I would not subject myself to that much radiation so I didn't have one done.

This conversation reminded me that on the rare occasions that I get to go to a botanical garden or "Sea World" or something of that nature, I rent their scooters for a day. It's usually $15. Whatever it costs, it allows me to be somewhat comfortable and less stressed about standing. I am usually holding an umbrella to shield me from the sun, as a well as carrying a squirt bottle with water to keep me cool. Very worth it.

You are so blessed to have found out the cause of many of your problems. Bravo for finding the correct doctor.

Ah, yes. the old "standing there and having a conversation".....most normal people can do this with no problem. I can relate. I've been in your shoes. I sometimes say, would you mind if we sit? I can't stand for too long. Or, if I hardly know the person, I keep the chit-chat from going on too long. You survived another encounter with the "normal" world. Congratulations! Oh, the machinations we go through to get through a day! Only another POTsy can relate. How far is the store? Where are there open parking spaces? How far do I have to walk? How am I feeling? Have I been vertical too long? My brain has stopped. I can't think. I can't wait to sit (or lie) down. Hope I remember what I'm doing, etc. etc.

I aready take quite a few medicines. I was wondering if anyone on here takes a statin drug and is okay with it? Thanks in advance.

Not being a psychologist or a psychiatrist, take my comments with a grain of salt. Yes, I absolutely believe medications can alter mood. When my mother began beta blockers, she became depressed enough to need hospitalization. They switched her medication. Irritability is also a manifestation of mood. I would guess that a medication can cause this. I know for me that taking raniditine (Zantac) for GERD makes me irritable. I'm am aware of that effect on me, but I do continue to take it because after many years of trial and error with meds, it definitely helps me. The only way to know for sure is to stop a med and see if you are less irritable. You must speak to your doctor before doing this, but tell him why you want to experiment. Also, IMO, having a decreased blood flow to the brain when upright can contribute to irritability, not to mention feeling poorly much of the time.

Jump, I'm glad you're psych diagnosis helped. My friend who has several health issues including a psych diagnosis said that it was her psychiatrist that had her pursue her physical ailments because the psychiatrist knew something else was wrong. We, as POTS patients, have to be cautious with unknowledgeable physicians who cannot easily explain our symptoms and feel that they have to attribute the symptoms to a psych disgnosis. That's why I wrote this thread.

Not being a medical professional, I'm going to ask some questions that may or may not be relevant. How do they know the "flow" or "amount" of oxygen to give someone without studies to show their oxygen saturation and the oxygen required? I thought that using or giving too much oxygen is not good either, so I'm back to my original question ....how much? Were you tested? Don't you have a meter or valve that is adjusted to deliver a certain flow of oxygen? Were you given a limit as to "how long" you can use the oxygen (how many minutes/hours) without measuring your blood's oxygen saturation? I thought this was all very precise when prescribing supplemental oxygen? Was it a pulmonologist who wrote you a prescription for oxygen? Are you being followed up and how frequently? What's the capacity of your oxygen tank and how frequently can you ask for a refill? Is this a covered prescription and if so how was it written? Sorry for all the questions. I am happy for you that your life is more normal. With your prior experiences, I'm sure the doctors wanted to help improve the quality of your life. And I'm glad they were willing to give oxygen a try. But I thought there is a precise amount that should be delivered for a specified time? Thanks in advance for any response you may give.

For the record, I saw my neuro yesterday and asked his opinions about what we all said here about psych diagnoses and POTS. BTW, he is a very knowledgable POTS doctor. He said: It is not uncommon that POTS patients are told they have a psych diagnosis. (I'm assuming this is prior to getting a more accurate POTS diagnosis.) He, himself, would never assume a diagnosis of depression by looking at the patient or hearing their symptoms. He said he would ask the patient, "Are you feeling sad? Do you cry easily? Are you feeling hopeless?" etc. He said it is not good medicine to assume a psych diagnosis without asking the patient....with one caveat.....some people are so depressed that they are laying in bed, doing nothing and not talking. Those symptoms can constitute severe depression. Those people cannot be expected to respond. But moderately depressed people will respond positively to the above questions if somewhat depressed. He doesn't even ask the questions about mental health unless something appears to warrant it. He is very aware of the fatigue level and difficulty in functioning of POTS patients and realizes it. As a sidelight to another thread, I asked about low flow, medium flow, high flow POTS and what he thought I had. His answer: We don't have the equipment/studies to measure whether you're a constricter or pooler. He mentioned a researcher that I cannot remember who was working on this and using his own measuring equipment to determine whether blood was pooling or not in our limbs. He said this researcher has died and he does not know of others pursuing this. He will not answer a question without a scientific proof or answer. I notice this. He won't even guess. He will not respond without proof and studies to back up assertions.

Yep! I was stupid enough to stay on it for 4 months. I had to walk around with a cane as I was totally insecure and felt that my dizziness would cause me to fall. That drug did more harm than good. I would not be surprised to find that in the future someone will realize that some medicines and/or immunization injections harmed people and contributed to their declining health. One other post mentions how if you have a defective gene, some drugs (metabolized by that gene) should not be taken. We are our own best advocates at this point.

Another thought... I usually get my neurologist's suggestions as to specialists "that understand POTS". Babette and I share the same neurologist. He's knowledgeable and I trust that he may have colleagues that understand POTS better than others. As for a PCP, I'm going through some "iffy" signs from a new one I just went to. (I have a post on the subject.) I'm scared that he wants to pin a psych diagnosis on me because I "looked" down......translation, I was feeling exhausted, I was hypothyroid, I was fighting a tooth infection and I had just sat waiting in an office to see him. I called him on it and basically told him he was wrong about his impressions of a psych diagnosis. I will be bringing corroborating evidence for my ANS dysfunction to my second visit next Tuesday. I will monitor his response. I have no patience for doctors who see our symptoms and think there is an "easy" solution. We struggle daily and the last thing we need is a doctor who does not hear us. Use your judgment whatever you decide. You are your own best advocate. We're here for you if you need it. Blessings to you.

I recently took it for tooth and gum related inflammation. Supposedly, I read somewhere, that it can help the POTS symptoms, or maybe I read NSAIDS helps with irritable bowel (I'm forgetting)? I do not take it regularly. I mean I've stopped now. Just be careful. I had a friend at work whose husband was taking NSAIDS regularly and one day he collapsed from a hole in his stomach (the pills caused an ulcer), and it was downhill from there. It's a long dtory, but he became disabled. He had no idea that he was causing an ulcer. Do you have to be on NSAIDS long-term? Hopefully, you eat when you take the pills?

Babette, If it's Dr. K you're talking about, he's oriented towards getting a proper diagnosis via testing. He probably does not want to mention possible diagnoses to you at this point because he doesn't have the empirical evidence to prove anything. I'm sure you had a ttt done already elsewhere, right? Is this your 2nd ttt? If so, you have a right to ask why he's repeating? Hang in there. I'm sure you'll know soon enough what's going on. BTW, he said something more could be going on with you. That does not mean "something else is going on". He may find that your diagnosis of POTS is sufficient explanation for everything.

Wow! I wonder how easy it would be to get tested if we don't go to Mayo? I know I'm sensitive to many things and I also know that if I would try to take oxycodone or something similar, I would feel poisoned----no kidding. I once took a pain killer and thought I'd feel better if someone took a gun and "did me in". It would be quicker and more merciful. I live in fear of ever "needing" pain pills. I'm going to see my neuro tomorrow and I'll ask him if he knows anything about "how" to get tested. I sound like I might have a defective CYP2D6. I checked out the website www.pgxlab.com I wonder if a gene can be "partially" defective?

I have to add to my previous post. Medications can make you tired as well, medicines such as beta blockers and antihistamines.

Hi, do you have dysautonomia? What is your diagnosis, if you don't mind me asking? We always need to be sure that we are healthy enough to exercise, and that there is no heart disease, lung disease or other ailment that would preclude exercise. Now, if you've been checked out for heart disease, lung disease, or as much as can be ruled out, I would discuss with your doctor if he thinks exercise would be harmful to you? As for the doctor who you quoted above as saying "we use up our energy and it's gone forever", I disagree. We use energy every day. Our bodies use the food we eat as fuel. We do not have a storehouse of energy waiting to be used up as we age. We are supposed to be making more fuel/energy every day if our bodies are working properly. I see no reason to think that age alone makes you more fatigued. I've seen a women in her 80's working out in my gym, bless her heart. Anyhow, age is a useful excuse as to why people are tired. Too often, age is used as an excuse when there are other reasons why a person is not well. Unfortunately, in women, heart disease tends to be overlooked as a possibility for fatigue. You need to be checked by a doctor for other causes of fatigue and there are many, POTS being one of them, thyroid disfunction, heart disease, lung disease, anemia, etc. Have a blessed day!

Actually, I used to work with a lady who did not have POTS who told me she was allergic to the sun. She would break out in a rash (if I remember correctly) if she stayed in the sun. Since she loved swimming, she built herself an indoor pool so she could keep swimming no matter what.

I am not endorsing one brand over another. Sedna makes the P5P. I have purchased their allithiamine (boavailable B-1) for a while now. I'm going to ask my neuro about this vitamin next week.

My first encounter with serum ferritin, I think, was a test run by my sleep doctor. I was low. In the past, when treating me for iron deficiency anemia, I think they used the hematocrit test. Luckily, my new Internal Medicine doctor just took my serum ferritin because I told him that my restless leg syndrome is driving me nuts and that the sleep doctor said he wanted it to be over 60 with my RLS diagnosis. If it turns out there is a simple way for you to feel better via supplemental iron, I think that's great! I am getting the impression that, unless it's a sleep doctor, the others are not really "experts" about the ferritin test and therefore do not do it.