Christine

Hello,

I too had a spinal tap because they thought I had MS. It was helpful because they were able to rule out a ton of diseases.

Good luck,

Christine

Hello,

I had a tilt test and a drug added to it via an IV. My doctor wanted to see my response as if I just got done running or something physical. Let me tell you it was awful. My heart was jumping out of my body and I could not even complete the test. They began to stand me up and my body reacted so badly they had to stop the test.

I hope you feel better soon,

Christine

Hi,

I have Hyperadrenergic POTS. I had a test done for this at the Cleveland Clinic. When this happens to me I can tell you it is different from my other symptoms of POTS. I get really emotional and I usually cry, I have trouble standing, I usually feel I am going to get sick. It almost feels like I drank too much alcohol. If I do not lay down, I will pass out. It is the worse feeling I have ever had. This response is differnt from my everyday symptoms. My everyday symptoms are not as urgent. When I become hyperadrenergic I feel like there is nothing I can do. This is when I want to go to the hospital and check in.

Christine

Hello,

I too have been told I am hyperadrenergic. Usually it happens when I put too much strain on my body. Either physically or I am just stressed out. My heart rate increases and my blood pressure drops. I get dizzy and nauseated. I feel like my heart is jumping out of my body. I have body twitches the whole nine yards.

When I have a bad attack, it will take days to go away. I have learned to try and control it and listen to my body. When this happens or I know that I have a chance of this happening, I change my rountine. For example, one of our good friends daughter died after Christmas last year. My husband and I are her Godparents. I knew with all of the emotions, family, funeral etc.. I my body would be shot after the funeral. I was on my feet for hours at a time. I did make it through the 3 days of sadness but they my body gave out and let me tell you I was in so much pain and I became really sick.

Good Luck,

Christine

Thanks for everyone who has responded. Now, I don't feel like I am crazy. Sometimes I wonder!!!

Take Care,

Christine

I notice a decline in my body temp. when I am not feeling well. I was just wondering if anyone else has noticed this. I might contact my doctor. Even when I am feeling hot, my temp is low.

Thanks,

Christine

I hope you continue to feel better. I have my good and bad days too. Sometimes it takes all of my energy just to get out of bed. Good luck at the doctors.

Christine

Hello,

I have POTS and I was wondering if anyone else has a low body temp.? When I become symptomatic my body temp. drops. I will welcome any advice.

Thanks,

Christine

I use a pill box and I also set my watch. Now, it is just out of habit.

Best of Luck,

Christine

Now, that might make sense. Not having enough oxygen to my brain. Maybe that is why I feel like I had too much to drink.

Christine

Hello,

Thanks for writing back. It makes me feel a little better knowing that I am not alone on this one. I guess I was wondering what could be causing this type of symptom???? Any ideas?

Thanks,

Christine

Goodluck, Lukky. I understand completely about doctors in one ear out another. Their ego does tend to get bruised when you actually know something they do not.

Take Care,

Christine

Hello,

Sometimes, I feel as if I am drunk. (No, I haven't been drinking Ha-ha.) I am not currently taking any medication because we are trying to have a baby. I know it may sound strange but that is the only way I can describe how I feel. I get very very happy and ofcourse my balance is completely off. My vision becomes very odd and things in the environment seem to be popping out at me. Colors seem to be more bright and it feels like I am on top of the world. When this happens to me, I try not to drive and do anything that I would have to concentrate on. I have to know if anyone else with POTS experienced something like this?

Thanks,

Christine

In my case I feel like I live on a constant roller coaster. Sometimes I am great and I just loose my balance a little and other times I am on bedrest. I do know that I my body does give off symptoms and I have learned to listen to my body. I also learned that my body tends to cycle.

I agree about doctors in general. I have had my share of doctors who think that I had a mental health issue. I am so happy that I have found out that I have POTS because I now know that I am not crazy and the doctors were wrong. It is a very good feeling to know this. I always have pleasure in knowing that I know my body better than they did. I have been dealing with POTS for over 11 years and now I finally feel as if I understand.

Best luck to everyone!

Christine

Hello,

Via my doctors, I am not allowed to take any over the counter meds or any other prescription meds unless approved by them. I am only allowed to take tylenol and on rare occasions advil or motrin. They told me that the meds would increase my symptoms and many tend to drop a person's blood pressure.

Christine

Hello,

Best of luck finding your new job. I hope it works out well for you. You can look online or call an disability attorney. Look under the disability act. I found out a lot of information when I was asking for a transfer from my job. My job became too stressful on my body. I worked with severe Mutiple Handicaped teenagers that I had to restrain on a daily basis. Well, let's just say that my body would shut down for days sometimes weeks at a time.

I would research the infomation first then when you talk to your future employer you can have you facts in order and believe me they will want to make arrangements for you. Depending on where you live etc.. I know you don't have to explain your disability but you have to prove you have one. They don't need to know every detail but there is a protocol for this type of converage. They will be a lot of paperwork and time you will have to invest in this. But it will be worth it. I had to bring a letter from my doctor stating my limitations. Also, I had to go back to my neorologist because my doctor at the Cleveland Clinic does not write letters. I was told to seek services from a disability attorney. I would take the time and research this because in the end it will help you and really once you have all of your information together, it you decide to every switch jobs it won't be a lot of work. I have worked with people with disablities for at least 14 years and I know there are laws out there to protect you. It will take sometime for you to find them out. Also, you doctor will have to be involved.

Good luck,

Christine

Hello,

My doctor told me to increase my salt intake to about 5,000 milligrams a day. The reason for this is to bring up my blood pressure. I have very very low blood pressure because of my POTS. The best way I get enough salt in my diet is by taking salt tablets. I would ask you doctor before you add salt to your diet. It can be dangerous but for me this is part of my treatment.

Good luck,

Christine

Thank you dizzygirl. I will try your suggestions.

Take care,

Christine

Hi Linda,

I hope things go well for you. I had an MRI in that area and they found a pons lesion. Basically, they do nothing but to continue to check to make sure that the lesion does not change or that I don't grow any new ones. Usually, they do not operate in that area because it is too dangerous. When they first found the pons lesion they thought I had MS. Well it turned out to be negative. My doctors conclued that the lesion is somehow related to my POTS. No one knows for sure.

Best of Luck,

Christine

Hello,

Thanks for everyone who responded. It helps me feel better that others have this too. Sometimes I feel like I am going crazy. I feel very lucky to have found this support group.

Before I found out that I had POTS, they thought my gallbladder was the trouble. I went through many tests and they all came out negative. It is so strange how having POTS can cause so many symptoms.

I guess I have two types of nausea. One type of my nausea comes with a headache and I become sensitive to light. The other time is when my BP drops and I almost feel hypoglycemic. I get the shakes, dizzy, nauseated and start to sweat a lot. I will follow this for awhile then I will make an appointment with my doctor.

Thanks again,

Christine

Hello,

Sometimes I have a bad case of nausea. I can find no clear pattern to my nausea. It comes and goes without warning. I was wondering if anyone else might have experienced this. Is nausea a symptom of POTS?

Thanks,

Christine

Hello,

CVS ordered them for me. I would ask you local drug store to order them for you. I only had to wait 2 days.

Christine

Sometimes my fingers and feet go numb. More recently, my lips have starting to become numb too. It feels as if I just went to the dentist. The numbness does go away. I guess if my lips get worse I will go back to my doctor.

Good luck,

Christine

Hi Linda,

I am so sorry to hear about your ER visit. It is amazing how ignorant some doctors can be. I too have periods in which it feels as if I can't empty my bladder. I don't have any advice just that you are not alone.

Take Care,

Christine

Hi, everyone,

I had to give in and go to the ER last night, because I was having POTS episodes every 15 minutes.  I would begin with my blood pressure going up, with the feeling of heat going to my face and fingers running up my spine.  Then, my heart would begin pounding rapidly, then go irregular.  After that, I would start shaking uncontrollably and have to pee really bad.  Then, all of a sudden, it's like the vaso-vagul kicks in and my blood pressure drops, the shaking suddenly stops, but I feel quivery and still have to pee.  After I pee--can I use this word, or should I say urinate?--Anyway, after my trip to the bathroom, where I pee like I've drank a gallon of water, it all starts again.  I did this from 9:15 last night until after 11:00, when we called my family doctor, who said she wanted me checked out, I guess to make sure I wasn't getting dehydrated.

Question one:  Does the above sound familiar to anyone?

Now, onto the hospital visit.  I told my gp that I didn't want to go.  She insisted, so I went.  The ER doctor came in and said he had downloaded my hospital file from the last ten years which showed visits to the ER where they diagnosed anxiety and panic disorder.  I told him that I just got back from Cleveland Clinic, and they found that I have POTS.  One, he didn't know what POTS was, nor did he care.  He didn't even ask about it at first.  He asked if I've been anxious since getting back from Cleveland.  I said no.  Then, he asked me what sleep medication I wanted to be sent home on.  I said none.  He asked why.  I said that my Cleveland doctor told me not to take meds like that because they mask my POTS symptoms, and she doesn't want me to mask them.  I told him I don't have just anxiety, I have POTS.  He burst out with, "Then why do you take Zoloft?"  I told him that Dr. Fouad said that Zoloft is good for the vaso-vagul response to POTS, that it's used for more than depression.  He wouldn't listen to anything I had to say.  He just kept saying that I have a history of anxiety, according to my records, and that's what he's going with.  After he left, the nurse came in, and I told her exactly what I thought of the doctor, then I told her all about POTS.  She listened and became more helpful than the doctor.  Then, my husband asked if the doctor was going to give my diagnosis as anxiety.  She said no, he was going to write depression.  We went off.  Then the doctor came back in.  We said, Do you even know what POTS is?  He hee-hawed around, then said, "Uh, it's some kind of disease."  Anyway, my system calmed down after awhile, surprisingly, then we went home. 

This morning, I called the hospital and registered a formal complaint against the doctor.  I told the woman I spoke with all about POTS, and she looked it up on the internet, downloaded some information, and is going to send my complaint and the POTS information to the hospital's head doctor, with a suggestion that the doctors get some training on POTS.  I also asked if my records with the hospital could be somehow changed or gotten rid of, as I think my past wrong diagnosis will affect my future care.  She said she'd look into it and try to help as much as possible.  I really hope this helps.

One other question.  I had a tall glass of milk yesterday with whey protein--my blood results showed that my protein is low.  I know that dairy really pulls blood away from the heart and stuff to get digestion going, so do you all think that the dairy could have caused my POTS problems last night? 

Do any of you have low protein with POTS?

Thanks.  Any help will be greatly appreciated.

LindaJOy

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