abbriggs

No, I have not had any testing done. Mine started with my pregnancy with my daughter. Every time I would have a contraction my neck would feel like someone was choking me. Dr. Levine in dallas told me that it was my muscles contracting in my neck. Mine is really bad with I first start falling asleep at night or after a big meal. I would love to know what it is. I will have it for 6 months and then I will go away as quickly as it came on.

No, I have not had any testing done. Mine started with my pregnancy with my daughter. Every time I would have a contraction my neck would feel like someone was choking me. Dr. Levine in dallas told me that it was my muscles contracting in my neck. Mine is really bad with I first start falling asleep at night or after a big meal. I would love to know what it is. I will have it for 6 months and then I will go away as quickly as it came on.

I thing the reason that a lot of us low Vit D is because most of us spend most of out time inside. We are not getting a lot of sun. I take 2000 iu every day.

Mine feels like someone is choking me. It makes my ears clog up and my head gets horrible pressure. It is one of the symptoms that bothers me the most!!!

It helps in the aspect that if I am having PVC's and PAC's all day I am out of breath and constantly tired. It has gotten rid of that. But I still get easily fatigued. I am also taking high doses of Vit C and I think that is helping as well.

Just wondering if anyone has tried Taurine for their Palpitations? I took magnesium for the longest time thinking that it was helping. It did for a while but, my bowels could not tolerate it for long. On some days I would have 1000's a day. I saw an anti-aging dr. who told me to try taurine for the palps. This amino acid had been a god send. My palps have been reduced to almost none!. I would urge everyone who has palpitations to give it a try. I have had no side effects. The palps are just gone! I take it in the morning when I get up and at night. I was told to take it 3 times a day, but 2 worked for me. Mandi

what medication do you take to lower your heart rate? Thanks, Mandi

My Blood pressure numbers are always close together with the bottom being high. What does this mean? Thanks, Mandi

I would do exactly what you are describing with SVT. Every movement, turning over in bed, just the slightest movement and my heart would pound. It was completely different than what I experience with pots. I had ablation to fix my SVT and it really helped. It did nothing for my pots tachy because it comes from the sinus node and my sinus node was not ablated. I am also certain that my SVT was hormonal. I would get it at the same time every month and it would last for a few night. Mine always happened when I was laying down in the middle of the night!

My tremor started about a year ago. I have had POTS for about 3 years with the pregnancy of my daughter. My tremor started with a pots flare and has not gone away. It gets better with beta blockers. What is this B1 cream you are talking about? As for the stomach. My stomach really started feeling better when I started taking asadophalus (not sure of the spelling). But i take it every night and morning, along with a bunch of other supplements.

I have always taken beta blockers to help control some of my symptoms. But, with me my BP and Pulse are HIGH when I am up right and LOW when i am laying. Beta Blockers always made my BP drop in the 70/30 range while laying and HR in the 30's. Because of this I stopped taking them. It was not until I stopped taking beta blockers that my tremor showed up. It is quite unnerving and only getting worse. Does Benadryl work in the same manner as Beta Blockers? It has always made me so sleepy. Thanks

My Tremors started when I was coming off my BB. A lot of the time they feel like my blood sugar is low and I am very very hungry. But that is not the case. If I have to get up in the middle of the night the internal tremor is horrible. It is so strong it feels as if I should be able to hear it.

I have had POTS for about 3 year now. My tremor did not start until about a year ago. The first time I noticed it seemed to be an internal tremor that you could not see on the outside. Now I have both internal and external tremors. Just wondering if you have internal tremors. Thanks, Mandi

I have low cortisol levels as well. I did not know that there was a correlation with POTS and Cortisol. I had different types of Tach. Sinus node and SVT. I had ablation to fix SVT and it really helped. Just make sure that she has a good EP and from what my EP has said you should never had your Sinus Node ablated because it will make POTS worse. I also know that my symptoms are worse with hormones. My Progestrone was low and when they put me on it, it made my symptoms so much worse. So I am wondering if I am very sensitive to Progestrone. I am seeing a dr. who specializes in Progestrone sensitivities in two weeks. I was put on Paxil 6 months ago which has really seemed to help me other than the weight gain. I take and pick up my son from school and stay home with my 1 year old and my husband can actually travel with work again. I go through spells. I am almost back to normal for 6 months then relapse for 6 months. So I do believe that there is hope. Tell her to try to stay positive. I know how hard that it. Tell her to look for the light at the end of he tunnel. No matter how far away it is. It IS there.

I take a prescription of Zinc Acetate 50 mg 3 times a day. Copper and Zinc fight for absorption in the bowls. There are a few other medications that you can take but the side effects are horrible. I also take 10 mg. of Paxil. Which has helped me to gain 40 pounds. But my Dr. does not want me to stop taking it until my copper is back to normal. I do have elevated levels of Mercury, Lead and Aluminum in my Urine. I have also been told that I have Chronic Fatigue. But I am not tired all of the time. Isn't chronic fatigue when you are tired all of the time. It just come on all of the sudden then goes away. Does this happen to anyone else. Most of the time i have shortness of breath. I also had an ablation on my heart for SVT. This seemed to help me. I still have sinus node tachacardia

Suzi, My copper level has always been low in my urine, but not in my blood. It was not until I started taking medication to get the copper out of my system that I started having it in my urine. There are a few different ways to test for copper. Urine, Free copper (which is free flowing in your blood, not bound to anything) and Total copper which is free copper and copper that is bound to the protein that helps get it our of your body. I do not make enough of that protein (ceruloplasm) to help the copper get out of my system. So I take medication to get rid of it. I have good and bad days. Copper also interferes with hormones. And we know that hormones make POTS worse.

I had a liver biopsy done which came back negative. So they don't think that I have Wilson's. i just have a lot of the symptoms. Tremor, Autonomic Disfunction. I was just wondering if anyone else had a tremor and or high copper.

I have been reading the forums for a while now, but this is my first post. I kinda wanted to give an overview of everything that I have been through and see if anyone else can relate. Completely normal pregnancy and gave birth to my son in Feb of 2003 at age 25. 2 years later pregnant again and very sick this time. I had a 2nd trimester miscarriage. I felt better immediantly. Almost a year later I got pregnant and again and had another miscarriage. Much earlier this time. About 3 weeks later I started feeling horrible. Every time I would stand up my heart would pound and everything would start to go black. I had my husband take me to the emergency room where they could see that every time I stood up my pulse would sky rocket and my BP would drop. I told them that this is how I felt when I was pregnant and they said you just had a miscarriage there is no way you could be pregnant and told me I was having Anxiety and pumped me full of Xanax which relaxed me but, did not do anything for my heart rate. 3 days later still feeling horrible I took a home pregnancy test which came back positive. This was pretty much the begining of everything changing for me. I pretty much spent the first 20 weeks of my pregnancy in Bed. Everytime I moved my heart would race. I would just stretch in bed and my heart would race. I had hyperemesis (severe morining sickness) and was put in the hospital 7 different times to be rehydrated. They thought that I was just severely dehydrated and that was what was making my heart race. I had never been so miserable in my life. Finally at about 22 weeks I got better. I had about 2 months of feeling good. At about 30 weeks I got put on bed rest for my BP. This time it was getting to high. Everytime I would have any type of contraction not only would I feel the squeezing of my abdoman I would also feel it in my throat. It would feel like someone was choking me. This was almost unbarable. I went in for my 36 week apt and my BP was 160/130 and I had my daughter by c-section 2 hours later. After having her my BP did not go down, so a lot of the next few days is very fuzzy. They tried all kinds of medications to get it to come down. I just really remember that I felt like someone was choking me and heart pounding in my throat. They finally got it to around normal when I was laying down but every time I got up my pulse would go into the 200 and my BP would sky rocket again. They did an echo and said that my heart was pumping like I had lost a lot of blood during surgery so they gave me lost of fluids and I started to feel better. They sent me home after about a week and I was pretty much on bed rest again. I called my cardiologist and told him that every time I got up my BP and pulse would skyrocket and he had me come in to see him and he immediately put me back in the hospital. I was told that I had POTS and was put on Beta Blockers (Toporal 100 mg). After about a week I could actually get up and function simi-normally. I would get very dizzy alot and very sweaty. Was told this was just something I would have to deal with. After a while my BP and Pulse would be normal when I was up but when I would lay down my BP would be about 75/35 and my Pulse in the 30's. This was actually very uncomfortable. I would feel like I was just putt putting along. It was about this time that my apt with Dr. Ben Levine in Dallas finally came around and I went to see him. He gave me a diagnosis of Secondary POTS due to deconditioning (bed rest). He helped me start coming off the beta blockers very slowly and recommended that I start a vigirous exercise program. It was during this time of coming off the beta blocker that I started feeling a strange sensation. I woke up early one morning with this internal vibrating sensation. It was one of the most disturbing feeling I had ever had. Like holding a weed eater. After about an hour it went away. This lasted during the night and morning for about the next week. Then went away. Every seemed normal for the next few months. I got the flu in January but seemed to recover fine. Then one weekend in April (08) I suddenly started having what seemed like panic attacks for no reason. I had them for two days and then that went away. Some of my POTS symptoms started coming back. Heart racing after eating, having to sit before I got up then I got a numb spot in my leg, a tremor in my right hand, choking feeling and the weird vibrating sensation was back. To go along with this was a tiredness that I had never experienced before. I would be fine then all of the sudden I would need to sit down. My body feels like jello. It takes energy to blink and breath. I can hardly move and after I sit for about 40 minutes I am fine. So because of all of this i went to see a neurologist who did a spinal tab, muscle biopsy all came back fine and did some blood work. He checked for high levels of copper in my blood. This came back positive. My Free Copper in my blood was 570 and it was supposed to be less than 20. It is now almost a year later and we are still trying to get the copper to come down my last test showed a level of 210. Slowly but surely it is coming down. High Copper can cause Autonomic Symptoms. Sorry this is so long i just wanted to tell all of my story and see if anyone else has high copper or a tremor. It has been a long 2 1/2 years and I am hopeful that we are on a path of figuring this all out. Thanks for reading Mandi