H. Potsland, Oregon

Thank you @Muon. The movement from waving girl on the lower left corner triggered my symptoms. Ugh. Anyone else? FYI: if you click on she goes away and a page about her opens.

It can be free here, too. It just depends upon the type of insurance you have. Over here, we have the freedom to choose whatever doctor we'd like to go to. There are usually 3 tiers of our health insurance level. Doctors have to sign up to be with various healthcare insurance companies. Doctors in Tier 1 level of our health insurance plan are the least expensive and in some plans they are free or practically free. If we want to see a specific doctor who is not in our plan, we have to make the decision as to if we really want to have a big bill to pay, or not. If we don't like a doctor, we can ask to be referred to a different one. If we have specific doctors we choose specifically to see, then we are referred to those doctors. That is what I will be doing as I determine which neurologists, electrophysiologists, cardiologists, etcetera are POTS doctors. In the UK do you have the ability to search the web for information about specific doctors and what their specialties are? Do doctors have a bio listed on a website for the practice or hospital that they work for? I have come across various research papers on various medical topics that were conducted in the UK and they list the names of the UK medical students. Over here most doctors have both and most doctors state the specific types of medical cases they treat. That is of course not always the case, as I have discovered about a doctor that someone mentioned here. If people didn't say on this site that she treats POTs, I would never know by the information that I found for her thus far. Maybe I just haven't searched hard enough yet. I'm searching on things like dysautonomia+oregon, pots+oregon, autonomic+oregon, or change it to "near me" or the next state north, Washington. Maybe you could find out which medical schools teach dysautonomia and autonomic dysfunction, find out which professors teach those subjects, track down their email and/or call them to see if they can help you?

What is exercise intolerance like for you? It seems to be different for everyone. I have worked out my entire life since I was in high school, which is when I started lifting weights. I have continued to lift weights my entire life to various degrees. I have always done a large assortment of physical activities. Over the last year+ due to the increase in my symptoms, my physical fitness level has decreased, especially a lot this year. I also had a surgery in December 2018 and one again in 2019. I did not bounce back from either surgery as I'd expected, so this did not help me regain my physical fitness levels post surgery. Last year at the gym (back when I remembered that I have an Apple Watch ) I noticed that my heart felt like it was beating too strongly sometimes after I'd lift a set of weights. My heart rate would of course be high. At the time I thought it was far too high for me to just be standing still doing shoulder pressed, biceps curls, or whatever. My HR went over 120. I remember I asked some doctor about it, but they said it was fine. Then during the time that I wore the Holter Monitor and did the treadmill running test, I also mentioned my HR in the weight room. I was again told it was fine. Then last summer I had to run as fast as my ability after a new dog that I had acquired shortly before hand who was about to go under the fence and into my neighbor's cow pasture, and I thought my heart was going to beat out of my chest. I also could not catch my breath. There were actually two occasions that that new dog took off exploring the property and getting into the neighbor's cow pasture. Both times I was astonished at how fast and hard my heart was beating, and how impossible it was to catch my breathe. Before that, I had had some had times of completely different exercise intolerance. When it was at it's worst was when my thyroid levels were much too low, so I believe there was a relationship there. What would happen is that I'd go to the gym lift weights as normal, and then my muscles could not recover normally as they'd used to. In less than 24 hours I have very sore and stiff muscles. My muscles would also get very warm. They would be so sore I had difficulty walking. It would take 3-5 days for the muscle stiffness and pain to go away. As for cardio ability, I have always had very good stamina and cardio ability. I've run some 5K's and a 10K in my life, but I would not call myself a runner. On the treadmill stress test last year I had to get my HR up to I am pretty sure it was 150, and then hold it there for a minute or so. This was on a treadmill that slowly went up to a steep incline and the pace was fast. At that time I had no difficulty running and recovering at all. The running after the dog actually occurred both times a few months after the treadmill test. This was also after the one and only giant fainting and hearing loss migraine. It was as if that specific event was the start of my symptoms that now really do seem to be H.POTS. I drink coffee. I always have. I'm not sure what caffeine intolerance would be like? I have reduced my coffee intake since the ER on Tuesday when I saw how scary high my BP was. I cannot tell much of a difference. The last drink that I had was once glass of wine January of last year. I 1-2 glasses of red wine 0-2 times per month. I have always been a light weight and sensitive to alcohol. It frequently gave me a terrible headache the next day. I started taking migraine preventative medications last summer, so I knew I could not mix them with alcohol. What was alcohol intolerance like for you?

"She also said that MRI are dangerous because of the radiation and that echocardiogramm will not show much more than ECG.", and "we will not give you referral for the MRI or echo, because she says that I don't see the need for that, unless your face is not pale and your lips are not blue.". She is obviously not very educated in the medical profession, is she? I would say, "NEXT!", and not waste another fraction of an ounce of thought or effort in her direction. She is not fit to be diagnosing or treating any patients for any type of issue with her form of logic. (I am obviously not from the UK. I hope it's okay that I commented. ).

Hi Viktor. Thank you. I will look into the two dizziness medications. My nausea usually accompanies my dizziness, which accompanies these other symptoms that seem to be related to increased BP and HR, particularly when I stand up. I have now had non-stop dizziness and nausea for over two months, which is also when the hot weather started. Before that I had short episodes of both. I don't have anxiety. Stress: normal amounts. I am a calm and even-keeled person. I live in the country, have animals, have a very healthy lifestyle and lead a peaceful existence. So far there is nothing that makes my nausea go away.

Which type of anemia are your referring to? There are 8. GI disturbances are common with POTS. I am currently trying to find a doctor and to see if I have H.POTS. I've had GI disturbances since I was around age 20. My GI disturbances have run the gamut. I also have thyroid disease which effects every aspect of the metabolism, including the digestive tract. I have hypothyroidism caused by an autoimmune disease. Hypothyroidism slows everything down and is known for causing low stomach acid. I am all too familiar with have all sorts of GI issues! Unfortunately all of the GI doctors that I saw early on did not listen to my symptoms and were very confused about treatment. The last one that I saw was not able to discuss the thyroid's influence on digestion and/or autoimmune disease because he said he didn't know anything about either. Plus, he did not listen at all to my symptoms and how I tried to make the thyroid/metabolism connection. Not listening to my symptoms, not knowing about my disease and how it effects the GI tract, he prescribed the wrong medication: a PPI. That incorrect prescription, coupled with the fact that he did not understand how the thyroid and it's relationship with the GI tract made that visit the first and last time I ever saw that doctor. I knew he was totally wrong. I did not fill the prescription. Instead, I went to work increasing my stomach acid and then my symptoms went away. When you mention PPI, I assume you are meaning the same medication, a proton pump inhibitor? PPI's decrease stomach acid and they don't increase electrolytes. You already had symptoms of low stomach acid: gas, bloating, stomach irritation. Stomach acid is needed to absorb nutrients, minerals and vitamins, specifically B12. It is needed to digest food and pass it through the digestive tract. Night cramps and eye twitches can be caused by B12 deficiency. B12 is needed to make healthy red blood cells and if you are deficient in B12, then yes, your hemoglobin can become too low. It sounds like the PPI for 6 months may have decreased your stomach acid when it wasn't needed, which then decreased your ability to absorb B12, which then possibly caused B12 deficiency anemia, which then caused reduction in your hemoglobin. Do you already take B12 supplements? You may want to get your stomach acid production back to normal and not deficient, plus maybe take methyl-B12. Iron deficiency anemia can also cause reduced hemoglobin. Low stomach acid also can cause reduced ability to absorb iron. It is possible that you could have both B12 deficiency anemia and iron deficiency anemia. If you had both would probably have more irregular blood work than a reduction in hemoglobin. Do you test your B-12 and iron panel regularly? Both would be very helpful in this situation. For electrolytes, your levels included and tested whith a standard and routine blood test called a Comprehensive Metabolic Panel. It includes sodium, potassium, chloride and calcium. Do you supplement electrolytes?

Hello! Can someone please explain? While in the emergency room earlier this week, the ER doctor tested, "Metanephrines Plasma Free Fractioned". This is not the correct test, is it? It only tested Normetanephrine Free. My value was 0.20 (standard range <0.90) and Metanephrine Free. My value was <0.20 (standard range <0.50). I was laying down when the blood was drawn. This does not tell me anything I need to know in regards to POTS, does it? On Monday (day before my Tuesday trip to the emergency room), I told my PCP about a "cata-something test" that tests three levels that help to confirm or rule out adrenal tumors or adrenal problems as the cause of high BP and HR upon standing. She ordered me a 24 hour Catecholamines Fractionated Free Urine Test. I am pretty sure that this is not the correct test, either? Or, do I take this test, but also do the stimulation blood test? From what I am gathering is that this test is trying to catch a change in norepinephrine, ephinephrine, and dopamine when going from horizontal to standing, in order to rule out or confirm Hyper POTS. So the test needs to be controlled and done twice? First before laying down, and then lay down for 30 minutes, stand up and draw blood for a second test? I also asked for her to re-test my ACTH, which just a few months ago had increased from the previous level of 13 in 2019 to 25. This is still mid-range, but for some reason it had increased. Not sure if this test is relevant or not, or if my results sound abnormal or normal. If anyone could clarify the exact tests that I need and exactly how they are to be conducted, that would be very helpful.

Hello from Portland, Oregon. I am new here. I am a female, 52, athletic, muscular, petite and of normal healthy weight. I hope to learn a lot from all of you! I hope to connect with other people with symptoms like mine, and I would love to connect people from the Pacific Northwest. I am hoping to get directed to doctors who can help me. I would of course love to stay as local as possible, but I will travel to a great doctor if necessary. It appears that I have Hyperadrenergic POTS, or something else with similar symptoms. A month ago I went to an ENT. I'd been having severe dizziness, nausea and pressure in my head. Driving to my appointment, my symptoms increased. My BP at the ENT was 158/85. It has never been recorded that high! I was shocked, but the medical assistant was not concerned. The ENT made no mention of it at all. I actually forgot about it. Driving home, my symptoms again increased. I kept feeling worse, so then decided that I should get a bluetooth BP cuff. It only realized this a week from today that I first started using it and writing down what I was doing when my BP and HR increased. I learned that when I arise from a laying or sitting position, my BP increases a lot, and so does my HR. Laying down for a prolonged period can make my BP have strange low numbers. Earlier this week I went to the Emergency Room due to my symptoms. Upon admittance into the hospital my BP was 172/85. I have never seen it anywhere near this high in my life! I was put in a bed and monitored for about an hour. Just like at home, my BP went down to normal, and so did my pulse. Then they did some BP tests after I stood up. By then my BP seemed to have leveled out and did not go up a whole lot. I had all of these wires hanging off of me, so I do not think I climbed out of that bed as I easily as I would have, so perhaps that is why my BP and HR did not spike. My main symptoms have been over the course of most of my life: - Unexplained dizziness and nausea that does not respond to Odansatron and Meclazine. - Standing up from laying down or sitting, and feeling like I'm going to pass out. - Cluster headaches - Was told that my throbbing head pain is just migraines. - Strange random dizziness/vertigo after drinking a glass of water (has also randomly occurred if I drink a large volume of water from a water bottle with a straw). - Varying degrees of motion sickness if I am a passenger in a car. However, in the last two months I've had episodes of 24/7 dizziness and nausea that is worsened when I am driving a vehicle. - Throbbing in my head, ears and sometimes visual throbbing in my field of vision. - First and only fainting migraine summer 2019. Walked up a long ramp, started fainting. Lost all hearing in both ears. Right ear was last to restore hearing. Then migraine aura, so I knew this was some sort of a freaky migraine. Inability to talk and walk normally. Then the intense pain in my head started. I eventually had to lay down. Terrible vertigo and intense pain while laying down. Then discovered I could not even sit up. Took ambulance to ER. Diagnosed with syncope and migraine. Later wore Holter monitor for a few days. However, I wasn't feeling well, so I mainly sat in a chair the entire time. Results were normal. Did a treadmill stress test. Results were normal. - That fainting migraine was the start of me standing up, having head pressure, losing my balance and then having intermittent hearing loss. My hearing would pulse off, on. Off, on. All with each heart beat. Everything would spin. On a few occasions I'd get migraine aura and have a "silent" migraine. A few of those times had strange low-grade pain and other symptoms. These symptoms went away with Immitrex. These weird episodes only happened about 6 times last year from June through October. They stopped in the cold months, and then they started up again this June. This year I have had about 8 varying degrees of these episodes. Two nights ago, after I first started BP medication and thought I might be feeling better, I had a double attack. I stood up and my hearing started mildly pulsing off/on. I sat back down and let the sensations pass. About 1/2 hour later I stood up and started to walk across the room. This time I experienced complete off/on hearing loss with each heart beat, felt weird head pressure, dizziness, nausea, and then the migraine aura started. I have never before had two such closely occurring episodes like this. I was left defeated and hopeless for a remedy to stop or at least reduce these symptoms. - I feel worse during summer months - I have Raynaud's in my feet and sometimes one ear during the cold and damp months. - I do not sweat very much. This I attribute to having thyroid disease. I have Hashimoto's, hypothyroidism caused by autoimmune problems. - Reading text in a book, on a PC or device can make my head spin. - One time last year I was reading emails on my iPad when I suddenly became very dizzy, nauseated, and odd feeling. I stood up, and then I had a major episode of off/on hearing loss, extreme dizziness and nausea, and then migraine aura. - My right ear has seemed to have intermittent problems for several years. Last year amidst my ear symptoms I had a hearing test. I was told I had the hearing of a 12 year old, whatever that means. They could find nothing wrong. My right ear has intermittent high pitched sounds. Sometimes it briefly and randomly hurts. Sometimes when I blow my nose, my right ear squeaks, then I feel pressure and my hearing is slightly deadened. The ENT I saw a month ago said it was normal. I completely disagree. Why would these symptoms have just started up a few years ago, whereas I did not have these symptoms before? Normal is no symptoms. My sister thinks I could have an adenoid problem (She has opposite blood pressure problems that I do: low. She also have Meniere's, Tinnitus, Pulsatile Tinnitus, hearing loss in her left ear and currently has an external implant, Vertigo, Drop Episodes, Migraines with Brain Stem Aura, and Vestibular Migraines. Oh, and she also has been diagnosed with Binocular Vision. We have very similar, yet quite different issues. I have always wondered if she has autoimmune problems, but she has not had enough or the right tests. She thinks she just has Miniere's, Tinnitus, Vertigo, and Migraines. I think there might be a genetic link between whatever is really going on with each of use because the symptoms are far too similar. I think she might have an autonomic problem and possibly autoimmune problem like I do. - I stand up and can feel pressure in my ears or head. I walk slightly up an incline 400' to my driveway gate, can feel light headed, fatigued, dizzy, nauseated, and my ears can pop. Driving a car and going up and down a minor hill and my ears can pop. Going over bumps my ears can pop and I can feel pressure change in my head. - I am sensitive to barometric changes when they first started changing either way each year. I get worse headaches and other symptoms. Then my symptoms seem to level out for awhile until the next big or consistent barometric weather change. - If I stand up my HR can go from 80 to 120. Sometimes it's 105 upon rising. Then I stand still and I watch my HR continue to increase up to 115 to 120. I have been taking migraine preventative medications that can increase BP. As of a few days I ago, I have discontinued: 10 mg Nortriptyline, 30 mg Duloxetine, reduced my daily T3 thyroid hormone dose a little bit. I am on day 4 of 40 mg Verapamil 3 x day. I started taking 40 mg Zoloft two days ago. I am still taking 10 mg Adderall in the morning because it really helps with my brain fog. Interestingly, I have not noticed a huge increase in my BP or HR in the hours following taking it. It is comforting to see that there are people here who take Adderall or other stimulants despite having H.POTS. With all of this in mind, does it sound as if I might have H.POTS? Are there any doctors that you recommend in Oregon, Washington or Idaho for autonomic dysfunction? Or, do you live in the PNW and you fly are out of state for you doctor? Right now I am trying to get into to see a headache specialist, but I do not know if that practice treats autonomic dysfunction or not. I have also been referred to a cardiologist who did my last echo back in 2015. I also do not know if he treats POTS or not. I see that in Salem there is a doctor named Lara Knudsen, MD who is mentioned on this site and it is said she treats POTS? Does anyone know how long it usually takes to get into see her? I also see that in Medford there is a POTS cardiologist, Amelia Arden, DO. Does anyone here see these doctors and can you provide feedback on them? Questions about medications: 1) What medications help for ear fullness, ear pressure, etc? 2) What medications help for dizziness and nausea? 3) Does anyone take a migraine preventative and what dosage? Thank you for reading this if you've made it this far! Any comments and feedback would be greatly appreciated.