Godsgal

Hi....I would not travel that far to see him only. I just saw him a few weeks ago. I liked him, nice guy, personally reviewed my 2 inch thick stack of records, page by page. That I did consider to be impressive. Good bedside manner. He did a lot of extensive testing on me which was beneficial b/c I had not had it done yet. But to travel to him alone I definitely wouldn't do it. At the end of our appt. he just stared at me and smiled like I was a medical anomaly. And literally said nothing. Didn't love that. BUT, he tested me for every single antibody known to mankind (what the other doc there told me) so I was satisfied with that. The POTS doc there was great....Dr. Vankatachalam. LOVED HIM> HIGHLY RECOMMEND. I have seen reviews on the autonomic doctor at Mayo Rochester. Perhaps that would be a better trip for you. But I agree with the other writer.....the Mayo is exhausting and expensive. It was worth it for me to go but I came from South Florida to get there so not that bad of a trip for me. I too have two little ones and want to be a better mom for them. I loved Dr. Wang in Rheumatology. He helped me out a lot as well. I would highly recommend the Mayo Clinic as a whole. I just wonder if Rochester may be better for you to travel to but I'm not sure. Haven't heard about that. I will say that Dr. Cheshire is a very smart doctor. He is the head of the neurology department there and is very knowledgeable about research, POTS, etc. If you decided to go there, make appts. with the other specialists for the same week so you don't have to go on standby. I was overall pleased with my week spent there.

What a wonderful husband you are for researching all this for your wife. I was very sick and bedridden with dysautonomia nearly feeling like I was going to die. I would get temperature fluctuations as well but nothing near what your wife is having. I would get flushing, tachycardia, strange neurological symptoms, the works. When I didn't know what triggered these things, my life was really bad. If she truly has some autonomic dysfunction, then 1) get her to that Mayo clinic autonomic specialist asap-----I went to Mayo in Jacksonville and it was a great experience for me. With a medical condition such as this, it can be so draining seeing a billion doctors all over the place who don't work together and don't know the condition. Seeing some experts all in the same place and knocking it out in a week or so was really helpful for me. 2) research for her and teach her the things that can trigger it. The main home page of this site shows under the pots section things to avoid and what helps. Simple things to try for her are compression hose, avoiding heat...definitely no hot showers or baths, find out what is triggering her flushing. Mine was being triggered by heat, smells, hair sprays/gels for my hair, foods, etc. I avoid those things and it has made my life a lot better. I'm sure they have done a ton of testing on her but did they test for carcinoid syndrome, pheochromocytoma, mastocytosis....surely they did if you had every infectious disease dr. working on her but it's always good to make sure. You don't mention a tilt table test. Did she get one of those? If you visited the autonomic specialist in Mayo, they could do autonomic testing on her which would include that. My husband and I have 2 young children. A 3 year old and my youngest was just born last March. It has been quite a struggle for our family, our marriage, but we love each other and do the best we can for our kids. We have held onto our faith in God and stuck it out and tried to stay positive. One day at a time. I want you to know that there is hope and a lot of my doctors have told me that if it is dysautonomia and it comes on suddenly and at a young age, there is a good prognosis. God be with your family! Take care and keep searching for answers!

They did an EKG....it was okay. He needs to get an ultrasound of his heart done. How did you find out your kids were having high heart rates? It is very scary......

So my 4 year old come May 10th has some symptoms that greatly concern me. Last night, he came into my room with 103.5 temp and I felt his chest. Heart was pounding like mine!!! I took his pulse and it was in the 160's. Called the pediatrician and he said it should only be 120-130 with a fever. Took him to the ER....cardiac monitor showed his HR in the 170's when he was crying. His fever had calmed down after waiting there forever and his HR was still 140's-150's. After 6 hours, he fell asleep and finally his HR was in the normal range. ER doc said to follow up with his doc/cardiologist and prescribed zithromax (which I'm also concerned about causing high hr). I have seen lots of symptoms in him for several years that concerned me but now that I have my diagnosis I'm MUCH more concerned. He wakes up from his nap sometimes completely drenched in sweat, looks delirious, low body temp, and that has happened for several years now most days when he wakes up from his nap. Lately, he has complained that when he is active, like riding his bike, he says he can't do it anymore. I can feel his heart pounding in his chest. He walks on his toes still. Sweats quite a bit in the heat. I know what a pounding heart feels like and it's miserable. Lately I notice him getting this quite a bit. Please someone help me, encourage me, anything. I don't want my kids to suffer with this craziness like I have. I cry as I type because the thought kills me. What thoughts does everyone have for my son? And has anyone else seen anything in their children?

Milk and eggs are allowed on the diet. It's just being cognizant of what you're eating and avoiding the stuff high in histamine. Like spinach....I used to eat spinach salads. Now I use romaine instead. Hope everybody has a great day today! Praying for everybody's wellness!!

Hi...I have two little ones and I am definitely in quite a situation myself although I'm thankful to God I'm getting a little better everyday. In December is when everything changed for me. I was hospitalized for 5 days and had to abruptly stop nursing when he was 8 months old. I had to be hospitalized again in January and was in the ER 4 other times. Watching my kids being left alone in Target after I collapsed....me heading out on the stretcher and them there alone is something I will never forget. I hated being away from them. After those admits I was bedridden for a while and I couldn't do anything with them. I would have people bring them to me and I would hug and kiss them and then they would be taken downstairs. My son will ask me to lay down with him for his nap and I can't b/c I'm on Midodrine. I have a hard time reading books to my son b/c of breathlessness and I can't just run and take him to the park anymore. I feel sometimes I have jipped my youngest. He hasn't gotten what the older one did and I feel bad about that. BUT I try to keep it all in perspective and I pray and fight to get better everyday. I do what I can. My whole family is helping pay for a live in nanny to help with me & the kids. It's a big financial burden for everybody but what am I gonna do? I have to have her here. I feel like some sacrifices now will allow me to get better instead of me pushing to do things I can't do and making myself sicker. Your body needs the rest. Take it and don't feel guilty about it. Just do what you can when you wake up. And I try to bless my family by not telling them how miserable I feel or how my condition is bothering me. I try to keep that for this forum I do the best I can with what I have to work with and I try to do things with the kids that I'm able to do. And I always tell them I love them.

Hi Lieze, You asked for a basic list of what I eat. I will tell you that I stopped losing weight and actually gained 2 pounds. Everyday I eat around the same things: fruit for breakfast...any allowed fruit. I can eat eggs so I have those with veggies cooked in. Fresh cooked chicken, turkey, or beef. All my stuff is cooked in olive oil. And I will put olive oil on my salads with herbs. All commercial salad dressing has vinegar (no-no). I have found that the olive oil, eggs, and avocado I eat everyday has helped stabilize my weight. That plus not vomiting or having diarrhea helps too I also can tolerate rice. I eat honey and rice milk. That's it. I eat nothing out of a box (except rice) and all my produce is fresh. I don't use any seasoning packets or canned stuff. None of that. I just avoid the produce that is high in histamines. I don't eat dairy b/c I'm allergic. It's a tough diet but feeling like my old self and not feeling like I'm going to die in front of my kids is worth it. Hope this helps you. And if you need recipe ideas let me know....I've had to learn how to be creative!

I don't think anyone can be tested for the DAO enzyme and what I read about this issue is that the recommended treatment is doing a histamine free diet and seeing how you react. There is a supplement called histame that supposedly supplements this enzyme but there is little known about whether it works or not. Google histame and I think you can read testimonials about it. I have read that everyone has their own personal allowed histamine threshold, certain people can tolerate more than others. Kind of like being lactose intolerant. Some people can tolerate yogurt and some people can't touch it. Again, an enzyme that digests lactose is lacking. For me, the diet has gotten rid of a lot of triggers for me.....sunlight and lighting. They are a lot better than they used to be. And I don't take histamines. Chemicals like in hairspray or perfumes still bother me so I avoid them. And if an odor triggers mast cell degranulation, then histamines are released. And if you are histamine intolerant, you will have symptoms because the mast cells are releasing histamine and you have no enzyme for it. I'm on a really strict diet and I feel human again, thank God. I would recommend you just do it. Desperate times call for desperate measures. I have to live a long life for my boys. If I never eat chocolate again, so be it.

Before I started eating the histamine free diet, I was so sick and losing so much weight because I couldn't tolerate food. I understand about getting so small but when I started this diet I was able to tolerate more with less digestion issues. One thing that has been great is that my intolerance to sunlight and certain lights has gotten much better since starting to do this diet. Before I restricted my histamines, I couldn't even let sunlight or fluorescent lights touch my skin or I would start flushing, tachycardia, diarrhea. All that stuff is a thing of the past for me now. It's wonderful. http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm This is the link to the diet. The only thing about this is the nuts. I read on another site that nuts and banana are a problem. I followed this diet to a "T" and it has been great. Yes....I still get some strange reactions to strange things sometimes but they are a lot less often and my resting heart rate has dropped a lot as well along with the pesky adrenaline surges. I started losing so much weight I was very concerned about dying too. 4 pounds a week. And that was eating plenty of food! I have been able to maintain my weight and have gained 2 pounds so that is nice. Everyday, I eat fresh fruits, fresh or frozen vegetables, olive oil, only all natural seasonings with a ton of sea salt of course. I eat raw honey, fresh cooked meats, and eggs. That's it. That's all I eat. It's really tough sometimes but everytime I cheat, I suffer.

Oh...on the food question, Julie, some histamine rich foods affect me a couple hours later and some affect me pretty soon after eating. And I just rid the last thing from my diet yesterday with a histamine affect....nuts....and my adrenaline surges are amazingly better.

Julie, It's my understanding that mast cells contain histamines.....and that would be why anti-histamines help a person get better. In my research of histamine intolerance, one place noted to avoid massages because that can cause a release of histamines in the body. The body constantly releases histamines and tries to digest them. Foods contain them and some foods can release them from mast cells. As we both know, certain triggers like stress, lights, perfumes, etc. can cause an attack because it is causing mast cells to degranulate and releasing histamines. Well, in this research it shows people that are histamine intolerant do not have a certain enzyme to break down histamines. This enzyme is called DAO....diamine oxidase. Certain foods also have DAO blockers. So if you triggered a degranulation of mast cells by stress, exercise whatever, and you didn't have the enzyme, there comes all the symptoms that a lot of us get.

I want to tell you about something that I am researching that is really fascinating me. I went on a strict histamine free diet a couple of months ago and my symptoms have been markedly better. All my POTS symptoms. All the eczema I had on my hands and knees is completely gone. I no longer get hives, rashes, it's really amazing. The random tachycardia, flushing, breathing issues, adrenaline surges, all this POTS craziness has been SO MUCH better for me. I had all the symptoms of MCAD but when I found out there is no clinical evidence for me to have MCAD I didn't understand why I was getting so much better. And I also didn't understand why certain foods were affecting me so much and giving me so many setbacks. SO....I found something called histamine intolerance on the internet. A lot of the symptoms of histamine intolerance are ones that a lot of us on here suffer-----low blood pressure, blood pressure drops, tachycardia, breathing issues, GI problems. There are a lot of significant ones that sound like a lot of us here. GET THIS.....I learned that histamine intolerant people can have adrenaline surges. When I saw that, I couldn't believe it!!!! Maybe a lot of us on here would feel better if the histamine free diet was started. A lot of foods have high levels of histamines and also a lot of foods can cause them to be released from the body. I know it's changed my entire life for the better!!!! I also know a lot of people on here take antihistamines and feel better. http://www.histamine-intolerance.info/ Here is the site to read about the symptoms. http://www.ajcn.org/content/85/5/1185.full http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm This is one of the links for the diet......I have found on other sites though that nuts have histamines and that bananas release histamine in the body so I avoid those as well. It's a hard diet but I've gotten a big part of my life back.

I would get him the full work up. Ask the doctor about CSF leak since you mentioned he had fractured his neck. Lots of things can cause these symptoms. Seek out every professional you can.....that's what I did until I got answers. I saw immunology, rheumatology, several neurologists, cardiologist, electrophysiologist, endocrinologist. And sometimes our condition is worth going straight to the horses mouth for answers.....like to the mayo clinic, Vanderbilt, some tertiary care place that knows about this condition. It's exhausting but his health is worth it. Carotid artery ultrasound is sometimes done with the really high blood pressure issues. Have them check for Carcinoid syndrome too. Prayers for you and him, Jared

When I was 18, I was told I had lupus and I didn't. All because my ANA was high. All people with lupus have high ANA, but not all people with high ANA have lupus. Hope everything works out for you and you get answers soon.

I got some prescription grade ones that were measured to fit me and they make me feel MUCH better. SO glad I got them. The ones I had before that didn't fit me right and were purchased from a drug store. Those made me miserable.

I just went to Jacksonville Mayo Clinic last week and saw Dr. Venkatachalam and he was AMAZING!!!! He knew POTS like the back of his hand and is familiar with a lot of research and studies regarding it. I loved him and he was incredibly smart about POTS and gave me a lot of hope and suggestions on how to get better with this condition. HIGHLY RECOMMEND HIM If I were you, I would contact the clinic and ask for the secretary of the office and see with EP they recommend. Dr. Kusomoto & Dr. Venkat are both EP's there. Take care

Hello, I have some crazy symptoms too and thankfully they come and go. I get a lot of muscle twitches and other strange things. The head of neurology at Mayo told me that there are some strange neurologic things that happen with this and they can't be explained. He of course has ruled out other causes with me. I will tell you my circulation is really strange and I have done some things that have helped me. 1) prescription grade compressions (work amazing and YES they are worth it!) 2) exercise 3)avoiding heat 4) pumping my heals 5) not standing or sitting for too long 5) stretching. I wish I could give more advice. I just try to follow the do's & do not's to a T and that helps me. Setting off my ANS sends things into overdrive for me so I try to avoid it. I have found there are a lot of crazy things that happen with this illness and I have been striving to get as many answers and rule out as many causes as possible. Try not to worry to much if that's at all possible. I have been thinking about seeing a circulation/vascular specialist. Take care.....

I would ask for a carotid artery ultrasound if it didn't get any better. And welcome by the way! I've seen your some of your posts and I'm glad you have found this site. It's a great source of help and encouragement. I'm 29....a young one like you. I think you're 25? Take care.

I'm sitting in the cardiologist department at Mayo and figured I would ask my DINET forum friends about my issue. I have been having some painful heart beats like when my heart is pounding and I can feel it beating. It goes beat, beat, beat, ouch, beat, beat, ouch, ouch. That type thing. Sometimes I'm just sitting and I'll feel just a very brief and sudden sharp pain. Not excruciating but definitely enough to scare me and make me concerned. So I got on the stress test with my cardio back home and I could only walk for 5 1/2 minutes. He said he saw no evidence of blockages during that time but I'm concerned I wasn't on the treadmill long enough. I'm only 29 so doctors are highly skeptical about any blockage in my heart. My regular cardiologist tells me to ignore it. But I'm having a hard time pretending this isn't there. It really is unnerving and scares me. I have had an ultrasound a couple months ago and it only showed a mild leaky valve. I did see on here in the forums someone mention that it can hurt when the heart is squeezing the blood through if there isn't enough blood to be pumped. Not sure if I imagined that up or not. Anyone heard of this? Also, the EP doc here told me some younger women can have something (a vein I think...can't remember what he said) that collapses in the heart momentarily that can cause pain and they can take calcium channel blockers to help. Anyone have this and know what it is???? Any thoughts or comments????

He said it was the caffiene. The doctors I have seen here are very knowledgeable about the latest research and studies.

Hi....I have trouble eating any leftover meats after a couple of days along with canned meat and lunchmeat. They all have histamines in them. So that sets me off and I only eat freshly cooked meat. I was getting pretty small too and I got on a special diet of fresh fruits, fresh veggies, maybe some eggs, raw nuts, raw honey, and a small serving of fresh cooked meat per day. On a side note, I just spoke to an extremely informed doctor at the Mayo Clinic yesterday about POTS. He did say for me to eat small meals with no carbohydrates, and to drink a small cup of coffee WITH the meal. He said not before or after. It has to be with. He said that only works for POTS people that have symptoms after eating and to just be aware of how it makes me feel. Some can tolerate it and some can't but the ones that can get a lot of relief. He said the coffee prevents the rush to the gut for digestion that causes so many POTS symptoms in us.

Hi....I'm currently at the Jacksonville Mayo Clinic and Dr. Pongdee seems extremely knowledgeable about mast cell diseases and other things as well that can cause similar symptoms as MCAD. He is an allergist/immunologist. Don't know which Mayo you went to? I would stick to the allergy/immunology field although I think some hematologists know about it as well. And I would also try to go back to Mayo for exploration of that if you can. Mack's Mom knows a lot about it so email her if she doesn't write a post. I don't know if I have it yet but I can tell you the histamine restricted diet has helped me more than I can write. Every time I cheat, my body punishes me. So I would highly recommend that if you have allergy problems, hives, weird symptoms that match up with MCAD on TMSforacure.org, etc. Doesn't hurt to try.

I would ask for an ultrasound of my neck to check and make sure you don't have a blockage in your carotid artery. I just read someone else's post about this.

Well....I'm at the Mayo Clinic in Jacksonville. Found out my thyroid peroxidase antibody levels are 819!!!! They are supposed to be less than 35. I have no clue what that means. I'm wondering if it's hashimoto's??? I have POTS and dysautonomia. I have some other abnormal labwork....my cardiolipin screening was positive. Anybody know anything about this???

I think I had POTS since after my first pregnancy but it didn't cause me enough problems to even think twice about it. I would exercise and felt great oblivious to signs that I now see was an extremely mild form of POTS. I then moved to the house with the mold at the very end of September 2010 and that's where it all changed for me. I could smell the mold and there was evidence of water damage. My kids started getting sick, runny noses, ear infections, irritability that was not recognizable in my 3 year old. My husband was hospitalized for a sinus infection. I started feeling like I was gonna pass out at the end of doing lots of errands. I was getting hot flashes, night sweats, peeing 15-20 times a night even after avoiding fluids, crazy depression which is very unlike me, burning in my chest, dizziness, headaches. My lungs would burn. I felt like when I was out of the mold it would get better. In the middle of December 2010, on the first day of moving into my new place, I collapsed and couldn't get off the ground for an hour. I figured it was weakness, dehydration, from moving and nursing a baby. The second day I was shopping at Target and I collapsed with slurred speech, dystonia, twitching, and spent 5 days in the hospital. I haven't been the same since. I was bedridden for a while. Now I can't go out in public without my wheelchair. I can't stand in one place for too long. I think I always had it but my really healthy diet and lifestyle kept it at bay. When I moved into the house with mold, my body couldn't fight anymore.