davecom

Thanks for the pointer in that direction since I think it is one I should definitely explore - I do think the extreme intolerance to cold and breathing symptoms sound extremely similar to what a lot of MCAS sufferers go through. I tested negative for Lyme back during my November hospitalization. I understand that tests are sometimes negative at the onset. I just found out that my primary care doctor is not only very supportive, but will also work with a POTS specialist that we consult by phone with next week long distance to help me locally. He got the POTS diagnosis down from Boston. He has agreed to order the 24 hour urine N-methyl-histamine which should give us a little insight into whether there is MCAS right? He also agreed to order us the 24 hour urine sodium and 24 hour urine metanepherine. This should give us some results, even if all normal, to bring to the specialist and move forward with. I continue to have an awful day. I had my worst walking/standing heart rate on midodrine since the hospital. I could only do 2.5 minutes of very uncomfortable walking, and my heart rate was hovering around 140. What a change from the two walks yesterday (10 minutes and 5 minutes at the 90-110 range). Interestingly, my blood pressure is actually way up today too. My PCP also suggested that the 15 tid dose of midodrine maybe a bit extreme. I am going to probably cut down back to 12.5 tid as I did yesterday and as I discussed with the electro-cardiologist today. What a good journal this will be if I actually get better!

I saw a new electro-cardiologist today referred by Boston. The half hour drive was excrutiating for me. I had terrible trouble breathing and chest pain this morning. I am currently wearing the 24 hour holter he ordered and I am going to do a stress test in a couple weeks. He suggested I could try 200 mg of ibuprofen 3x a day for the chest pains. I am hesitant because of all of the gastrointestinal issues and because the last time I took it preceded the nose bleed and one of the many terrible nights. He is going to try to make a call to a POTS specialist who also understands congenital heart defects about 2 hours away for me. Boston has suggested to the visiting nurse I go up to 20 mg of midodrine 3x a day, but the guy today said I could decrease to 12.5 mg 3x a day based on how low my resting heart rate has been getting while on it. Physical therapy will hopefully be coming today or tomorrow. Little victories like the walking yesterday are important but overall it still seems like each day I am struggling more and more in the mornings... After the terrible trouble getting to and from the appointment, I had another near collapse after going to the bathroom. I was also very dizzy this morning, even when sitting in a wheel chair. This was after 15 mg of midodrine. So cold.

Thank you very much!

Anecdotally, reading around the forums, I have noticed that many people who are on clonidine have gotten at least partially better. I am intrigued about its use in hyper-adrenergenic POTS. I tried doing a forum search and a Google Scholar search but I could find no placebo controlled (or even small non-controlled) trials of it with POTS patients. Does anyone have a link to one or more information?

Katy, thanks for the suggestion. We're trying to make it now so that I will never be home alone for more than a couple hours between PT, visiting nurse, and home care worker. Everyday is such a struggle with your heart going crazy up and down. I slept 4 hours last night. Woke up with my heart racing, managed to fall asleep again for a half hour a couple hours later and then in my dream I fainted and then I woke up in real life unable to breathe. I had a lot of pain in my chest and trouble breathing this morning. This morning a couple hours after my first dose of midodrine I tried to stand up and do some exercises but my heart rate was in the 140s and I couldn't handle even a minute of standing. Going to the bathroom was again a huge struggle At 3:30, 1.5 hours after my second dose of midodrine, I managed to walk for 10 minutes in the house, my longest period yet. My heart rate initially went to 130, but settled back down to betwee 92 and 112 for the majority of the walk. I was pretty pleased with this, although of course I finished out of breath, with my heart racing when I stopped, and tons of chest pain. I know this was largely the result of midodrine and not any real progress I guess... The visiting nurse service came for the first time today for 40 minutes. My nurse seemed really nice although he had never seen POTS/dysautonomia before. There is hope I will be approved for in house PT starting tomorrow and maybe at home care. I have an appointment with a new cardiologist around here tomorrow. It's early in the morning, and I'm concerned about the trip given how weak I am and how much trouble I have even sitting up in the car + this will be before I have much midodrine in my system. I am increasingly of the sense that midodrine is not the right drug for me (at least on its own) to properly control my fluctuations in heart rate. I am still most worried about the chest pain and difficulty breathing even while surpine.

The original video is gone. Does anyone have a link?

It's a little dated, but I think it explains the subtypes and general testing/treatment/symptoms better than any other I have seen. Many of you probably have a different favorite that maybe you sent to others to explain your condition, please share. I am going to show this one to my primary care doctor to coordinate my treatment: http://www.changingstates.co.uk/tutorials/02-PG-Cert-Dip/Behavioural%20Essay%20Papers/Aversion%20Therapy/Cardiovascular/Postural%20Tachycardia%20Syndrome%20%28POTS%29%20%28printer-friendly%29.pdf

Thanks for all of the replies! I am carefully considering all of the avenues you've presented and I've seen them before in my research as well. Unfortunately they all point towards getting to the right specialists (checking for EDS, having the MRI re-examined for Chairi, blood volume check, autonomic neuropathy) and that is such a challenge in my current situation. The most uplifting post I read was by lemons2lemonade about how she got better by ignoring most of her symptoms and pushing through to do more and more exercise each day. That is basically the strategy that I was advised of in Boston along with high dose midodrine and following up with my psychologist. I am currently mostly worried about my resting and lying heart rate being way up since I've been out of the hospital. In the hospital it was always 50s through 70s. I woke up several times last night as I did the night before with my heart racing. I only got a few hours of sleep hence. I checked my pulse each time and it was over 100 and I was having trouble going back to sleep. It seems even sitting down today I am hovering around 90 (except an hour after taking each midodrine dose which brings it down to the 70s). I am trying not to check too much though. Nobody was home this morning and I had to go to the bathroom before I took midodrine. I barely made it back and I thought my heart was going to explode or I was going to pass out. I had the spasms in the center of my chest when I got back with my heart still racing and I swear as I feel my pulse it stops for a second in the middle of it rushing so fast and then continues... but I'm supposed to not believe this is heart related... I've decided (or it has mostly been decided for me) to return my leased my car, cancel my business phone line, and defer my student loans. Probably good ideas. I really wish there was a monitored facility I could be in since I feel like things are so bad and my parents need to go back to work. It seems the only place we can think of is a mental institution. I keep trying to explain to everyone that the symptoms I feel are real, but they think some of them are real and the rest is anxiety. I have been rejected from all rehab facilities and nursing homes.

Hi Bebe127! Thanks for the link to prettyill.com and the encouragement - I am intrigued by Dr. Diana's videos! I wasn't clear from her POTS going away video how she actually thinks she cured her POTS. Her magnesium defficiency video is interesting too. I was on the low normal side and did feel better with some supplementation before I ended up in the ER, so I will start that up again. I was also interested by the fact in the video about her POTS going away she mentioned having a narrow jugular vein and I have the same thing confirmed by multiple MRIs... hmmm. Reading over my story I realize I forgot a few things just to add to the picture for others who end up following my story: - My feet sweat profusely and so does the rest of my body sometimes since this illness started (I read this rules out some POTS subtypes in a Mayo paper which cause one to lose the ability to sweat in extremities - I think it was autoimmune neuropathy... I think I probably have hyperadrenergenic POTS, since my blood pressure doesn't fall dramatically when standing, but I am really determined to get my norepinephrine levels checked when standing to confirm) - I have a complete intolerance to cold to the point where in the shower temperature changes cause me to feel I can't breathe even now when doing a sitting shower, although a very hot environment is also problematic for me. - I had all thyroid hormones tested and they were normal - Cortisol was rechecked in the morning in Boston and was normal - I had an MRCP done of the pancreas, liver in February and it was normal - I feel like food is always regurgitating back up my esophagus and I do have some trouble swallowing. I throw up in my mouth a little bit sometimes. My grandmother has Arnold-Chiari Malformation Type 1, but the radiologist on my brain MRI didn't mention anything about it on mine, so I presume I don't have that.

Thanks for the reply Angel! I had also spent about a month of my research thinking this maybe spinal fluid related and high intracranial pressure. The neurologist dismissed it - you need a spinal tap I guess to really find out although he did refer me to an eye doctor to check my optic nerve/blood vessels behind the eye for high pressure - it was a normal examination. I forgot to mention the neurologist also did an MRI of the cervical spine. It showed two bulging discs and one herniated disc. My neck also started clicking around the same time all of this started and my job had me hunched over a laptop the whole day. That combined with the chiropractor experience kind of preceding the symptoms getting worse had me thinking this was neck related in some way. I saw a spine doctor as a follow up. He looked at the MRI and said my overall damage was actually pretty normal for someone my age if not better than average. My cord itself was not compressed at all. He sent me to a physical therapist who showed me some neck exercises that actually seemed to help with the pressure, but a couple days later I ended up in that first March ER. I've stopped doing the exercises but they did seem to help with the pressure. I will ask someone to help me find the sheet later today and scan it in so others can see the exercises. I look forward to hearing more about your story and tests!

The other things is that spasms in the chets seem to happen after exercise and a lot of them are right in the centef of the chest - like right now after walking, that's it's hard to believe the squeezing is not heart related. I just walked for 3 minutes with my heart rate staying in the 95 to 112 range while on midodrine and then had two terrible center of chest squeezing spasms...

Hi everyone, Let me introduce myself. I'm a 25 year old (well 26 in a few days) male from the northeast United States who was diagnosed in the past two weeks with POTS and "maybe some more dysautonomia" based upon my heart rate going from the 70s to 150+ upon going from lying to standing. Below is my full story for anyone bored enough to read. I know it's long, but I would really appreciate any suggestions or directions to go in from experienced dysautonomics (especially those with similar symptoms who have gotten better!). I don't mean medical advice since I know that's not allowed - I just mean places to research, articles to read, doctors to see, etc. 6 months ago I was perfectly healthy... now I struggle to make it to the bathroom or even just to sit here comfortably sometimes. I'm usually weary to put identifying information online, especially health related, but I am so sick now that I really just don't care and am desperate for help/direction pointing... Here's some background: Until 6 months ago I never had recurrent headaches, never had gastrointestinal problems (other than lactose intolerance diagnosed by testing at age 12), and was very very healthy except for some congenital heart defects (sub-aortic stenosis, co-arctation aorta, aortic aneurysm, aortic stent put in) that were corrected as a child/teenager and left me completely asymptomatic throughout my life (even as a child before all of them were corrected). My health was superb. I had finished undergrad and graduate school and was the cofounder of a startup company and engaged living in California. The only medicines I was on were lisinopril 10 mg daily (to keep blood pressure low - it was 130s/70s when I was 18 and high teens/65 by the the time right before this happened), and 81 mg aspirin (to keep stent worry free). It all started in late September. I was under a lot of stress both from work and personal relationships and flying (which I am deathly afraid of but was doing anyway on a weekly basis), and I went for my yearly congenital heart checkup to Boston. Everything was great and all the results were great except for that during the MRI after they injected the contrast (gadolinium) I got nautious and felt I was about to throw up and they had to pull me out. I had never had a reaction to contrast before. Then the doctor called me a few days later to tell my LVEF had fallen a bit on the MRI. I didn't realize at the time that it was really a minor fall (from 58 to 50) and could even just be from dehydration that day or statistical error by the MRI. I got very worried and started doing exercise I had never done before and just generally freakng out about it all day long. I was not allowed to do heavy duty weight lifting but I was doing some fairly light stuff I had never done before and I almost killed myself running a 10 minute mile on the treadmill (When I was in shape and younger I could run a 7 minute (I know not very impressive) which I'm just mentioning to illustrate this means I may have been very out of shape or otherwise sick at the time). In late September/early October I started having terrible GERD out of the blue, having never had it before. I would stop eating at 6 PM and still wake up at 9 AM the next morning drowning in acid. At the same time several things happened: - about a month before this started I hit my head very very hard on the very top and was dazed for an hour and had a headache for the next day - I got a flu shot around October 1st at CVS that seems to have 'hit a nerve' and caused my left arm to be completely immobilized, unable to even lift my laptop, for a week (started a couple days after getting it and went away a week later). - I got food poisoning from a local restaurant and threw up a little - I cold turkey stopped Rogaine. I had been on it for 2 years, using tons of it all over my head but I wondered if this had hurt my LVEF since I read some journal Things continued to get worse with the all day GERD and I was having trouble breathing sometimes, terrible chest pains, and my stool started to change. I also had these sudden shocks of pain in my chest as I was right between being awake and falling asleep. I saw a GP who told me it was GERD and irritable bowel syndrome. Hesitant to go on PPIs, I just took a lot of antacids. I went to a chiropractor since I was often hunched over at work and they did some manuevers on my neck and back that made me very uncomfortable (they had helped me a few times in the past when my back went out (several years inbetween, not a regular thing)). For some reason this chiropractor thought he was qualified to do an EKG and did one. Of course mine is abnormal due to my surgeries and I ended up in the emergency room after stressing out about it so much that I had trouble breathing. They kept me overnight and the only thing they found was my potassium was low (3.0) and some PVCs. They repeated an echo and EKG and everything was as it had been the month before. I went home and still had the sudden jerks of pain as falling asleep. I called their help number and they said they were probably just hypnic jerks. I finally was willing to try some heavier GERD medicine - I did Zantac and I felt it was causing me palpitations, so then I finally started a PPI (prilosec). They also sent me home with a holter. It came back all normal including a low sleeping heart rate (low 40s) and some normal PVCs. I saw a congential cardiologist and he assured me everything was still fine in that regard and that I was just a little dehydrated and I could eat more bananas for the potassium. I still felt out of breath easily and my stool continued to get weirder and weirder (floating, greasy, yellow, grey) and I started to lose weight. I had changed my diet to be very low acid but I was still eating plenty of food. By the end of October I had lost about 10 lbs. I started having constant abdominal pain behind my last right rib but the acid was much better on prilosec. On October 30th I was walking through the parking lot of a Whole Foods and I started feeling dizzy and off balance. Each day this continued for more of the day and I started feeling a pressure on the top of my head and in the front of my face. It always would be relieved by lying down, and sometimes just by sitting down. I was convinced my main problem was gastrointestinal. Around this same time and I can't remember if it was before or after I started gettind dizzy: - I hit my head again in the same place but not as hard - I tried a deworming medicine (Reese's Pinworm Medicine) becaue I saw small white things in my stool which in retrospect were probably mucous. I had horrible reaction to this and was basically unable to move for a couple days. I finally saw a gastroenterolgist. Standard blood tests, stool test, abdominal ultrasound, were all normal. By the week of Thanksgiving I continued to be sick. I was supposed to see my fiance for Thanksigving but at the last minute my parents convinced me to come back to New York to see doctors, so I did. I started a gluten free diet. In New York, CT Scan of the abdomen without contrast was normal except for "mild thickening of the terminal illeum due to an infectious or inflammatory process". I went for a brain MRI. Then the next morning after not sleeping I felt I couldn't breathe. I got very very upset and just couldn't get breathe in. My hands and feet got super cold. I called 911. They took me into the ER and did an EKG, abdominal ultrasound, blood tests. All were normal except I was very dehydrated (despite drinking a lot of water the day and night before) with a BUN score of 36. They admitted me to the hospital based on the recommendation of my family doctor/gastroenterologist to get to the bottom of the abdominal issues. I was in the hospital for a week. They blood tested me for all the standard gastrointestinal issues as well as doing an endoscopy, colonoscopy, lower GI series, more stool tests, repeat ultrasound of the abdomen. While in the hospital I had more attacks of trouble breathing and super cold hands and feet that nobody could warm up and horrible shaking, chills all over my body. They tried giving me Ativan a few times. An EEG at the hospital was abnormal but I was unable to stay still because of the coldness during it. It made me feel very very slow/mentally uncomfortable and didn't help with any of the symptoms - but it did make me feel very calm! Everything was normal except: I was slightly anemic, I had some trace white blood cells in my stool, our gastroenterologist/family doctor felt he saw some redness in my ileum, some mild gastritis in my stomach, and some mild refux damage in my esophagous. All of the biopsies from the duodenum, illeum, and colon were normal. Pretty mild stuff but the diagnosis was colitis based on the little evidence available. I started PPIs again in the hospital and was put on Lialda 1.2 gms once per day. I went home. I started the Specific Carbohydrate Diet (SCD). After a couple weeks the abdominal pain got much better, but the stool continued to be funky and I continued to lose weight. I went to see a neurologist about the head pain. He repeated the EEG, did a transcranial doppler, got the results back of the MRI, did an MRA, and an MRV. All was normal except for "hypoplasia" of the right jugular vein on the MRV. A follow up MRI of the soft tissue of the neck called it "thombosis of the right jugular vein". I saw a vein doctor who assured me it was not the cause of my problems and was probably from one of my childhood surgeries. Simultaneously in this period (December through January) I went for a second opinion to another gastroenterologist. He did a review of the prior biopsies and an a capsule endoscopy. All was normal. I felt there was a strong correlation between PPIs and the head pressure so I variously tried stopping them and seemed to feel a little better, but the head pressure would still return upon walking. He sent for an advanced blood test for inflammatory bowel disease. It came back all negative except for elevated anti-OMPC antibodies. Basically E. Coli cell wall antibodies. This is the January-February period: I had to stop the SCD diet because I was still losing weight. I went back on a more regular gluten free diet. I started taking Pepcid for the acid. Weight seemed to stabilize for a while. I got a cold and felt much better in terms of the head pressure. I had an incessant runny nose from it and went on some claritin. I seemed to have esophagous or some kind of chest/neck spasms (even in the center of the chest which is scary) feeling like something is squeezing. Going off Pepcid seemed to help. I saw another gastroenterologist. He did a point stool test that showed massive malaborption of fat and some of starch. Blood tests were all negative except that my gastrin hormone was bizzarely low (<10) for someone with tons of acid, or really just bizarrely low for anyone. A 24 hour stool test for malabsorption was borderline normal but the doctor said to him it was high enough that it still seemed like some fat malaborption is going on. We tried pancreatic enzymes. They made the pain behind the last right rib worse and made the stool even more neon yellow. Also in this period I saw a couple different ENTs. One wanted me to try a surgery the other said none of my problems are sinus related (I had a sinus CT scan and he scoped me). He looked down my throat and said I have chronic esophagitis. Neurologist was out of ideas and said I had post-concussion syndrome. I also spent all of these months doing research on my own, reading article after article. I had of course left my job by then and did some consulting work part time as I could tolerate for a few hours a week. I read about POTS myself and in February did the pulse test. It was normal. I had done some standing blood pressures in December/January. They went up slightly when standing, and I didn't remember seeing anything crazy about pulses when doing them. In early March I started having trouble breathing, even when just sitting down. During a long traffic filled drive to the gastroenterologist in the city I felt I really couldn't breathe, and I got the coldness acommpanied by numbness and could barely walk. He sent us to the emergency room although my vitals were normal. They kept me for 30 hours, did the standard vitals tests. Again found my potassium was a bit below the normal range (3.2), an ENT again said he saw chronic esophagitis and said my thyroid felt slightly large to him. A CT of the chest was normal. I went home. This is 2.5 weeks ago. I started taking Zantac 150 mg twice a day. I saw a very young cardiologist a few days later. He said he felt the coldness in the feet was concerning and thought my toes looked a little blue and were deathly cold. He felt he heard different pulses in my two carotid arteries. That night I again couldn't breathe. We called him up and he said he would admit me to the hospital if I went. I went to the ER. Everything was looking pretty normal until I stood up to pee. Everyone ran into the room and the monitor went crazy. My pulse jumped to the 150s. An ER doc quickly looking through the records said "has anyone ever told you you have atrial afribulation". No I said. They admitted me. I was again in the hospital for a week. I was examined a lot and had a lot of blood tests for rheumatology and pretty standard stuff. It was all negative. My morning cortisol level was very slightly high. No imaging studies were done but EKGs were the same as my old ones. The heart rate on a wireless monitor kept going to the 140s every time I stood up or even when straining on the toilet. Their gastroenterologist started me on liquid carafate and the Rifaximin (Xifaxan) antibiotic 550 mg twice a day. They finally diagnosed POTS based on nothing other than a diagnosis of exclusion and the changes in pulse. A pulmonologist reviewed the chest CT scan from the week before and said a remote possibility was that the stented part of my aorta seemed to maybe be touching my esophagus and trachea. They suggested I try a beta blocker and florinef. They said they had little experience with it. To make a long transport story short we ended up driving me to Boston where my congential cardiologist was and children's hospital where I had been treated my whole life. I barely made the drive - only by lieing backwards in the seat and trying to breathe as calmly as possible. They saw the huge changes in pulse (even going way up just upon sitting up) in the ER. They admitted me and I was there for 9 days (until 2 days ago). I started having increased pain in my chest during this period. They did an echocardiogram and ekgs. My LVEF had actually improved to 61. They said things looks pretty much the same except my heart muscle looked "a bit stiff" but nothing to be too concerned about and nothing overall looked like it could be causing my symptoms other than POTS. There was talk of a stress test and repeat MRI but this never materialized. They did more blood tests (not POTS specific) and checked my urine for heavy metal contamination (negative). They did an upper GI series and said swallowing was pretty normal although there maybe a little turbulance around where the stent was but there was nothing they could do about it since the food went by okay in the end and the only thing you could do is remove the stent. As an aside - this is a world class hospital and world class doctors including my cardiologist who has known me my whole life. I saw their POTS guy who had written a paper and seen some cases. He was against further autonomic testing and was a big advocate of midodrine and exercise for all POTS patients. They started me on 5 mg of midodrine twice a day and titrated it throughout the week to 15 mg three times a day (45 mg/day). They also started me on physical therapy, encouraged fluid, and their nutritionist got me on a supplement (I had tried 4 before) Elecare that I could finally tolerate. I noticed myself throughout the week that on higher doses of midodrine my resting heart rate actually decreased quite a bit from the 70s to the low 50s, even high 40s sometimes. I mentioned this to the resident my last day and he said I should titrate myself as I see fit as had the original doctor. My heart monitor went off constantly the whole week. They kept changing my leads and telling me it was interference and trouble reading my t-waves since they are very high naturally from my surgery. EKGs at rest they said were normal. I was told not to be concerned about the chest pain since it was non-cardiac since my Echo, EKGs, and physical examination gave no indication of it. One doctor thought I had costochondritis on top of POTS. We did the drive home. I barely made it. I had horrible spasms in my chest (they feel like squeezing) and sometimes in my lower neck. I hope and guess this is esophagitis. When we got here I was so dizzy and cold that I started convulsing, teeth chattering. My parents put blankets on me and a heating pad. I had some water and salty potato chips and couple hours later I felt better (a relative thing when you can't stand up). Then that night I woke up with a terrible headache three times. When I finally got up in the morning at 8 AM, I had a bloody nose (somethig I used to have terrible problems with when I was younger daiy but hadn't had for 3 years). My heart rate was in the 80s just lieing there and I was sweating profusly. I managed to do some walking yesterday for 5 minutes after my second heavy dose of midodrine and my heart rate only went to 110. I woke up last night every 1.5 hours sleeping on the couch. I woke up this morning and my heart rate was crazy ( we got a pulse oxometer) jumping from the 80s to the 110s just lieing there up and down, something it wasn't doing in the hosptal. At the hospital it had always been 50s to 70s lieing down, now it seems it's even uncontrolled lieing down. I feel midodrine is really playing havoc on my system, but I can't function now during the day without it. I spend the whole day sitting down on the couch. I venture to get up for the bathroom and some short physical therapy, although a lot of times I just pee in a urinal. My current symptoms are: - Chest pain, increased by standing up/walking - Head pressure caused by standing up or walking or straining - Dizziness from standing up/walking - Return of some abdominal pain behind the last right rib mitigated by positional changes - Big heart rate changes from positional changes but even now just lieing here - Terribly cold feet - Acid In addition midodrine causes; - Goosebumps all over my body - Increases cold feet - Shrunken genitals, ED (I was actually still having normal very strong erections right until starting midodrine despite all of the other symptoms) - Much lower resting heart rate while on it On a positive note, while in the hospital, I did finally manage to put on a couple pounds (total weight loss was about 20 lbs). I think the supplement has really been helping and I hope to continue to have weight gain at home. There was talk of sending me to a nursing home or acute rehab facility. There is also hope insurance will cover a visiting nurse service and at home physical therapy. I am seeing an electro-cardiologist referred by Boston on Thursday morning. I have appointments with POTS guys in NYC in Mid May. Honestly this has gotten so much worse the last month (and I'm not even sure I was having the heart rate changes a few months ago - in fact I for sure wasn't in October or the halter would have shown it and since my own pulse test was normal in Febrary, I don't think I was then either) that I am very scared. The world class doctors in Boston including my own cardiologist who is world class and I trust looked me in the eye and said that my condition is not heart related, I should not be scared by the chest pain, and that I will probably eventually get better with physical therapy and midodrine. I feel strongly they should have done further autonomic testing while I was there and I am very worried about whether I will make it to next month. Of course there are all the side issues that come with this such as being unemployed, nobody understanding, the impact on my parents, and constant fight to prove to people and doctors that it's not psychological (even with the POTS diagnosis that is still hard amongst doctors). I met two other people with POTS the last week and neither has gotten better. I am VERY scared because of the sudden onset of all of this and especially how bad it has gotten the last month. I wonder a lot about what the trigger event was - the hit on the head, the gastrointestinal illness, the stressfull time combined with these, a virus, etc. I probably will never know. I may continue to post in this thread as I progress or maybe I will use it as a journal if that is okay with the administrators.