Maiysa

That was an interesting article Naomi. Thanks for posting. I noticed they studied a lot of people with EBV. It sounds like this is a very common virus. I never had a cold sore or anything or mono and my numbers were very high for EBV. I had one doctor tell me in the early 2000 that it is the disease of the year and it will fade out. He said it means nothing. I guess I don't know one way or the other, but it seems to be a topic of testing in the study posted by Naomi. Although this drug for chronic fatigue sounds promising, the side affects were pretty harsh and most people on here are already having heart problems. Any type of chemo therapy wipes out your good cells, I would want this one to be on the market for a while. In the meantime, I would rather deal with the fatigue. Although, I wish it would go away. I can't imagine why some POTS patients would not have CFS while other would. Jangle, I know you struggle, so that's so good to hear you don't have CFS. I don't have POTS, but when my blood pressure is fluctuating I get so tired, the doctor read my HR and BP and said, just from standing, it's like you're running a marathon, no wonder you're tired. If only it was a marathon. And even when my blood pressure isn't fluctuating, I'm still very very tired. But I've never been diagnosed with CFS, but I think I have "IAST", short for "I'm Always Soooooooooo Tired." But I've also had constant anemia for the past five years. Anyhow, thanks for the great articles girls!

That's such great news. Hard to find the autonomic labs in the west or southwest. Just in case and I know it's a far drive, but Mayo in Scottsdale also has an autonomic lab through the neuro department. But good to know there are options.

Hello Heissovereign, I just wanted to tell you that for a few years I had a POTS situation from a lung infection but now my HR goes very high when I stand up, sometimes my blood pressure goes up and only occasionally down, but this is mostly during a flare up like a period, or a fever, or blood sugar issues, too hot, etc. Triggers also bring on orthostatic intolerance which is mostly hypo, or low during flare ups and I faint a lot. I went to Mayo and was diagnosed with autonomic neuropathy by a test called QSart. If you can get a chance to do that test, it would be nice to rule out some types of dysautonomia. It's a hard machine to find, but they are out there. I think most of the major dysautonomia hospitals have them and both Mayo clinics do as well. Good luck to you and good health!! Let me know if you have any questions about Qsart testing.

Thank you Potsmama and Katybug. Potsmama, I can't remember, did you find a doctor or are you waiting on an appointment? Katybug, did they put you on some meds for the possible MCAD? If so do you notice a difference. I know you're having all sorts of tests right now. When will you know something?

Thank you Puppylove and Anaphylaxing!

I've literally been sick since December 27th with flushing and nausea, my blood pressure stayed at 146/92 for days and HR of 116 for several nights which ended up being from my period and then a 2 week upper respiratory virus followed and then of course the anemia set in which makes the dysautonomia somewhat of a nightmare and then a few weeks later, another period. I pray for them to go away. Anyhow, I lived. Wahoo! And thanks to some of the girls sending me to the mast cell blog and posting there, I found a doctor in the southwest to at least be able to rule out mast cell activation disorder. Not sure I have it, but my tryptase was 11 which my local doc told me it was nothing to worry about, but my girls here said to have it looked at-so I'm going to do it. So happy to find someone local. IT's a miracle. I usually have to go somewhere else. Of course I have a 4 month wait, haha.... but they have me seeing a hematologist first and that's in March. So that's only a month away, so it's good. Okay, good health to all. Maiysa

Hey Katybug, Well it sounds like this doctor is trying to figure it out, but it sounds slightly confusing. But glad you are getting some help. I wanted to tell you that if you have to take any of those medications for your situation remember there is help out there. I have been dealing with this for a year now since my son has stage four Crohn's disease. It's sad but true, but he is doing so much better on the medication. He has tried a few. WE were actually paying $800 a month for his medication and that's after the insurance only paid half. It was a stressful mess, but now he has his medication covered but I had to fill out a lot of paperwork. Please let me know if you need some help. My son takes Humira and I have every phone number available. But so glad you are getting a second opinion. Good health to you!

I was very athletic. It's what I miss the most besides travel. I did a little bit of stunt work in the day, but the fibromyalgia got too bad. But when I got sick I was bike riding excessively! I also lifted weights 2-3 times weekly, took yoga classes, pilates, hiking was my hobby, and I loved to play basketball and softball with my two boys. I was even doing flips and round offs at age 42 just to be funny at get togethers. haha. But of course that is all gone. But I was able to ride my bike for a short time this winter. Waiting for this flare up to go away to do it again. It gave me so much hope. I have orthostatic intolerance, so I can't over do it or I will black out. But I have been able to ride the stationary bike for just a few minutes a day once or twice during my flare up. IT just makes me feel like I'm doing something. And I think it is making me stronger.

I'm so glad someone asked this question. I have autonomic neuropathy and I always thought it was just part of the gastroparesis. I really freaks me out when it happens. So silly, but true. I notice that if I'm having acid reflux it can make it worse. There is also information on the internet that this is also associated with this phenomenon of not being able to swallow correctly. Happy Sunday to All!

Thank you for the information JoeJack. I'm aware of what Choline is. I would be nervous about adding anything although my body already makes it because my body has an unidentified autoimmune situation which causes me to react to many things, even if they are naturally occuring. I took 1/8 of a teaspoon of magnesium and it sent me to the ER. The first time I took levothyroxine my body over reacted to it. Also, a dab of plain simple progesterone, which was made as natural as possibly, sent me to the ER. My own hair on my head showed up as a border line allergy. Even though all of these are naturally occurring, my body goes into some type of autonomic reaction. So, I have to be extra careful. These episodes are ridiculous and I can't believe this is my life now, but it is what it is. But thank you for the information anyhow.

Hi Endure! I read your post. Sorry about your issues. Your reactions are very very similar. I too have severe reactions to any type of medications. I actually had these severe drug reactions when in the hospital as a young girl in my 20's after surgery or other small procedures and if they gave me valium, morphine or anything like that my blood pressure would go high and then I would feel as if I was burning up and then my blood pressure would drop low and my heart rate went too low also. It was scary! At one point they told me that I was very close to death. It caused awful seizures on top of it sometimes. Anyhow, this didn't happen again until over a decade later. I developed a severe lung infection that lasted 2 years-it damaged my central nervous system and now this happens several times a year. And just simple medication like Pepto Bismol or even Gas X, does exactly what you described. The small episodes are so uncomfortable and I feel an anxiety that I've never felt before and my heart rate and blood pressure go like a yo-yo. If I start to burn up and black out, my family puts me in a cold tub.(not full of water, no one wants to drown, but they pour ice cold water over my back and it helps to bring the blood pressure back up) Doctor laughed when I told him my families emergency procedure and said, it must be causing the blood vessels to constrict bringing the blood pressure and oxygen back into my brain. I actually have turned blue on occasion. Anyhow, I even took some magnesium and ended up in the ER a few months back, it caused terrible anxiety. It over stimulated my immune system something terribly. So not even sure I would be able to take what JoeJack recommended but will check into it. Prior to the lung infection I never had any sensitivity to alcohol, but now just one teaspoon will make me black out instantly and then I get so sick and nauseated with blood pressure issues. So my delicious warm red wines are no longer a part of my life, but I like a good sparkling grape juice. lol Just giving you some support. I'm fascinated to see what you find out. Sounds like we have the same reactions. Let me know if you find and answer and I will do the same. Good health to you!

Hi Potsyturvy, Sorry to hear about your sweat issue. I had the Qtest and the doc said usually even a person with dysautonomia sweats a little bit, but I had zero. I tested positive for autonomic neuropathy. But I got a flu bug last September or October and it sent my issues into a tail spin. I could not stop sweating for weeks even after the bug was gone. Even if someone knocked at the door it would send my system into floods of sweat from just being slightly startled. It was bizarre. Anyhow, the immunologist talked to me about a surgery where they could go in through my ribs to shave something off to shut off my fight or flight. Yikes. I was told my fight or flight was stuck in the "on" position. But luckily after a few months it stopped. I was told by Mayo Clinic that this is possible to have bouts of this abnormal sweating, even though I don't sweat when I should. They said it's part of the autonomic dysfunction. I wonder if Qtests can ever have false negatives. I was told there is no false positives. But maybe this is also part of the MCAS situation too. I don't know sometimes, they are so much a like. Okay, hope you find some answers soon and feel better.

Jangle, I forgot to mention, I have autonomic neuropathy and hypo orthostatic intolerance and on occasion hyper orthostatic intolerance. I was a very social girl and outgoing, and even was an actor in theatre and lil bits of camera work for a while and nothing..nothing made me nervous. But now if I get too excited good or bad, I pass out but mostly I get so woozy that I feel very drunk for about 5-15 minutes and can't really carry on a conversation. But lying down always helps and cold water. IT's very embarrassing. And now when I meet new people I get even more nervous because just a tiny tiny amount of positive excitement will make me woozy. I met my sisters in laws for the first time a few months back and we were having dinner and I was laughing so hard and I passed out and they had to take me outside to lay me on the bench. I hate it. What a terrible first impression. I was told it is a vagal response. The hospital called it mal vagal, although I can't find anything on it. But sometimes I don't come to and then I start losing oxygen to my brain, they call that a non spinal injury dysreflexia episode. But I don't think anyone knows for sure. Dysreflexia only happens in difficult situations such as medication, flu, fever, traveling...etc. So you are right, it is a vagal dysfunction from what I was told. Although I don't know anything about the enzyme. You must be researching your little heart out.

Bren, I agree. My sister is like an angel and is so pure. I imagine it is probably even more so with your own children. Thank for the well wishes.

Bren, I didn't know you have an autistic child and with your condition it must be very difficult. My sister was autistic. I know how difficult it can be. Bless your heart. Sending you a big hug.

Congratulations Tenille!! That is great news!! Every little bit helps and will make you feel more independent to have some of your own. But I know how you feel, I went to the university and had an amazing position in my field when I had to quit. Living on disability was not my dream when I went to college and started making good money. I think a lot of people on here have been successful and have all been in the same boat. And many young people had big plans to be hard working adults. But life has other plans sometimes. I have been turned down for disability since 2007, it will be a happy day when I can get approved, but I know what you're saying. It's sort of bitter sweet.

Jangle so glad to hear you saw doctor who had some insight. I have autonomic dysfunction but am embarrassed to say that I can't remember if they said it was sympathetic or parasympathetic. Will have look at my records. But I also had raynoud's at one time. I think I was over using my hands in my line of work as an aesthetician which involved some massage of hands and feet. Anyhow, since then the Raynaud's has gotten better. I always found if I stuck my hands in cold water it helped so much. I don't know why. But my hands used to burn they got so inflamed. I feel terrible that I don't have an answer for you about specific treatment, but I'm sure someone on here will be able to help you. Just wanted to give you some support. Hope you are having a healthy day.

Glad you got some answers Serbo. Wow, you sound like you have awesome doctors. Good for you. I don't know if I have MCAS, but today I ate some fish and I got flushed and have been very ill with a fever of 100 and am now hacking up terrible stuff from my gland in my throat. I hope it goes away because I can't take any medication....at all. Not even pepto bismol, it sent me to the ER once. So I'm afraid I will be in the same boat as you if this is my issue. I will curious to hear how you are doing. I hope you can feel better soon. Will be thinking of you next week. Glad they are putting you in the hospital to try some meds. That's really good to hear.

And after all my positive talk and hopes of trying something new today, like Tai Chi, it didn't happen. Ah, nuts! I ate some fish and I had some strange reaction and now a fever again and am now bed bound since my blood pressure is all over the place and can't stand up. Also having strange heart rates that are scaring me a bit and causing some anxiety. Somedays I think oh, it's going to fine, but then days like this....sort of crappy, but I'm still hopeful even though it was my second day out of the house since December 27th. Maybe tomorrow will be better. Somedays are just like this. What do ya do? Sorry if I'm whining. And I have to say, hats off to you girls with little ones. I think of you all often and how hard that must be. I have 2 college students at home and that's enough, not sure how I would handle little ones. You girls are always in my thoughts on those tough days. PS It was nice to hear people's stories although they were hard, it's interesting to hear how everyone deals with this and thanks all for sharing.

Good question...Yes, the worst thing. But I'm adjusting.

Whoops sorry, typ error, I meant "they" just rub the ultra sound over the area.

Oh, you are so sweet Naomi, but I should have been a lot smarter and checked those records a long time ago. Anyhow, yes, you should at least ask for an ultra sound. They are so easy and no prep at all. The just rub the ultra sound over the area. Also, you would need to see an endocronologist possibly. Is your TSH okay? Are you having any thyroid symptoms?

**** Naomi, I have had thyroid issues and know a little bit. For me my thyroid was large which is a sign of a complication of some type of thyroid issue. So small can usually mean nothing since people can have different sized thyroids within a certain range. Usually nodules should be looked at, but most people acquire nodules after a certain age and it can be typical. But always always get a second and even third opinion. I was unfortunately the one who found my own nodules on my CT scan, it was overlooked by two docs. I even told them I was having trouble swallowing. They always felt my neck and said they couldn't feel anything. Also, my TSH was completely normal. But during a CT scan of my lungs it fortunately and accidentally picked up a scan of my thyroid. The CT doc forgot to put the enlarged thyroid and nodules in the summary, so no one ever saw the results. Doctors mostly just look at the summary at the end of the paper work. One and a half years later I went through all of my tests with a fine tooth comb because no one could find out why I was so sick. At the time, two years ago I was 45 years old, 5'6" and weighed 110 pounds. I looked like I wasn't long for this world and I wasn't. I could not stand up without my heart rate going to 200 and my blood pressure was very erratic. I knew someone missed something. That's when I found on that old CT scan from over 1 year ago, that I had 2 enlarged thyroid lobes and a nodule. So I brought it to my primary docs attention and he reluctantly gave me an ultra sound and told me that it was surely nothing. Even after the ultra sound showed abnormal results my primary doc was reluctant to give me an endocronology referral because my TSH was still normal. He insisted what I had going on with my thyroid was normal. Anyhow, I was persistent and got the referral. It took a few months to get to the Endocronologist, and after a 45 minute consultation and feeling around my neck, I was told... don't worry about it! He said, the chance of me having cancer was 5% and if by the end of summer I wanted a biopsy, to do that, but to not give it a second thought because he was 95% sure it was nothing. I went with my gut since it was almost February, and him wanting me to wait 8 months was not an option since I was seriously sick. So I ignored what the endocronologist said and went straight to the diagnostic center to give the radiologist my ultra sound and CT results for a second opinion to the endo doc. I told the radiologist my short version of this story, he left for about 3 minutes and came out and yelled, who is your doctor, I'm calling him right now. He was so angry!! He said you need to fire your doctor, and he needs to quite his job, this is thyroid 101! You have a very enlarged thyroid lobe that can be toxic or an autoimmune disease and your other lobe is calcified which makes your chance of cancer at 85%. He said, I hate to scare you, but you should be scared, your doctors don't know what they are doing. And also he told me that the endocronologist wrote the biopsy for the wrong thyroid lobe. And then he looked and saw that it was on a CT scan over a year ago, he blew up and said, I'm calling your doctor right now. He said, I'm keeping these and you need to go get a referral for a biopsy right now. I went back to my primary doc, again I was met with resistance and he said, and I quote, "I wouldn't listen to some idiot radiologist over an endocronlogist," and he refused to give me a biopsy. I had to call my insurance company to get the referral. After the biopsy I had surgery ASAP. So to sum it up, I had to have 2 surgeries, that's another story. Anyhow, the first surgery was for cancer which unfortunately had spread to my parathyroids and had to be removed also, and the second lobe was exactly what the radiologist thought, it was toxic. So every time my thyroid was secreting thyroxine, it was poisoning me. People couldn't believe the difference in me just a few hours after the last surgery. And I could stand up without my heart rate going through the roof. That was huge. Also, the reason they couldn't feel my thyroid poking out of my throat was because it was actually growing in towards my throat not out, like most lobes and nodules do. Also, abnormal results were only found in a not so typical thyroid test, thyroidglobulin. Anyhow, sorry this is so long, but the moral of this story is, you have to be your own advocate. Go for second and most of all third opinions! As mad as I was at those doctors who kept brushing me off, I'm soooooo grateful for the angry radiologist. Also, the endo doc is no longer an endocronologist here and I never saw him again. But also to relieve your fears Naomi, I think small is better, but you should get a second and third opinion on the nodule, although they can be normal, just double check. And my husband has had nodules for a few years and so far they are normal. ;)Let me know how you come out.

Ana, you are making perfect sense. Thank you so much for clearing that up for me. I was sent several detailed articles on Mast Cell but was so overwhelmed with all the information. But it was very very informative from what I could absorb. So thank you for putting it in laymen's term for me.

HI Doozlygirl, Your episode sound a little bit familiar. I also have autonomic neuropathy and am having similar symptoms like yours. My skin gets blotchy and I get so flushed, but my pupils dilate. Not sure if you have that. But the whole thing is very scary. My blood pressure goes up and down. The girls on this site brought it to my attention about MCAD, so had my tryptase test done and it was 11, with my normal from 1-10, and I was feeling completely fine during the test, so I want to try to take one when I'm having an episode. I contacted the Mast Cell blog and they sent me quite a bit of information, they were also very helpful. But the information was overwhelming and above my head, so, I will just have to try to find a doc to rule Mast Cell out. I was told that my mast cells could be granulating, not sure what it means, but I guess I need to look into it and I hope that's not true. YIkes. But I'm very curious about your doctors theory about dilated blood vessels. I feel that is what is happening to me also. Occasionally my skin itches but I don't get the hives. I did a time ago, but it was during a terrible lung infection. Also, I was able to take a walk today, first time in almost two weeks, but had to stop due to something that my husband and I have come to call "prickly heat", don't know how else to describe it. But from my mid tummy down to my knees I was on fire and started itching. This only happens if I walk too fast. Don't know what it is? When this happens we have to pour cold water on that area to make it stop. It is uncomfortable and sometimes will go into welts. But I don't think it's allergy, I think it is my circulation or something. Okay, hope you get some answers soon and if I do, I will compare notes with you. Good luck and health to you!!