peppermint patty

I haven't been diagnosed with POTS, but I have been diagnosed with NCS. My pulse jumps from 50 to 70, but my bp spikes quickly. Just a few minutes ago while lying down, 97/63 to 133/87. When this happens I feel very sick to my stomach and I am in a cold sweat. I am still trying to figure out what is going on with me----do I have POTS or something else. I am on a beta blocker.

I am diagnosed with NCS and just this Sunday I had severe vertigo. It lasted for a few hours where I couldn't move my head off the pillow. This has only happened once before when I was feeling horrible back in January. I don't understand why we get it either...maybe the whole dysautonomia thing. Hope you are feeling better-----Pat

When I started taking Florinef, I felt wonderful---full of energy; but after being on it a month, I took my regular pill in the morning and had a severe allergic reaction. I had to go to the hospital. To my dismay, I can no longer take it.

Dear Looking4answers, You sound a lot like me. I have been diagnosed with NCS and I too have severe high blood pressure spikes. The doctors put me on metoprolol XL 25 mg twice a day. Since I have been on the medication, symptoms have improved, but have definitely not disappeared. It is extremely scary and very hard to live with, but I try to take each day as it comes----some days good and some days not so good (lately more not so good). My blood pressure usually runs 90/60 and heart rate is 50. I have been unable to work since January and it has been one year since this whole thing started. Believe me you are not alone and this is why I love this website! The people on this website are amazing----they always keep me company and lift my spirits---So always remember we are here for you, Peppermint Patty

I have been on florinef for a week now. It seems to give me more energy, but then it also seems to give me headaches and at times severe stomach pain. I was hoping that when my body adjusts that the latter will disappear. Ok, here is a strange question---since I started florinef, I have noticed a small cyst on each of my feet (same exact place). Could it be a side effect or just a strange coincidence. (Tomorrow, I am calling the dr.)

I am currently taking a beta blocker twice a day, but as of yesterday my doctor is taking me off of it. I am hoping that after I am off of it, my severe fatigue will stop.---Pat

I am so happy you posted this question. Yesterday, I was just prescribed florinef. I will be starting it in one week after I am weaned off of my beta blocker. I am always so hesitant about beginning new medications. ---Pat

I can tell you about my experience. This doesn't mean it will happen to everyone. My experience was horrific. I was on Keppra to stop seizures that I wasn't experiencing for one month. The dosages were high (1000 mg to 2000) and changed every week. It caused severe panic attacks that included shaking, uncontrollable crying, overwhelming emotions and other severe medical symptoms. At times, I thought I was dying. With my last attack, my family called the physician and the physician told me to take another Keppra. This landed me in the local hospital and from there they sent me to the teaching hospital that told me I did not have seizures. They took me off the medicine and my severe side effects ceased. After this experience, I am very hesitant about taking any medications. I am glad you are getting a second opinion. If you have any other questions, just ask----talk to you soon, Pat

Just make sure you get a second opinion before you do anything. I was first diagnosed with epilepsy before being diagnosed with NCS. I was on seizure medication for a month before I went to a teaching hospital and they told me I didn't have epilepsy. The doctors there said that EEGs can be interpreted slightly differently, because of the sensitivity of the test. ---Pat

Hi Maggie! I am 49 and just was diagnosed with NCS this year (June). I am still trying to adjust to this illness. Some days are a lot better than others---currently not a good day. Nice to meet you, Pat

I thought it was my imagination, but lately more than not items just slip from my hands.

Sorry to jump in again , I DO want to hear Pat's experience too. BUT, my son has NCS (not POTS) and he is not fine between episodes. He is also DXed with chronic fatigue syndrome (huge overlap with NCS) and has major dysmotility GI issues. I have recently been diagnosed with NCS and I definitely am not fine between episodes. I am chronically fatigued (not officially diagnosed). After work I usually come home and collapse. I don't do a thing on the weekend, except rest to get ready for the next week. Actually, I am contacting my doctor tomorrow, because the fatigue is constant. I want to thank everyone for sharing and helping.-----Pat

Good morning, My doctor put me on sectral (200mg morning and 200mg night). My blood pressure is the opposite. It seems to drop when I stand up (ex. 86/48). I really like Dr. Becker. She was the only doctor who took my symptoms seriously. I forgot my PC was also on my side, but he was totally perplexed. He continually ran tests and sent me to specialists. Other doctors said that my symptoms where too obscure to diagnose. Crazy huh? Hope you have a good day, Pat

Hi Rene, After seeing all types of doctors, it was my cardiologist who diagnosed me with NCS on the first visit. She was the only doctor who listened to me and knew right away what I had. At that time, I was so excited that I finally had a diagnosis. Her name is Dr. Becker and she is located in Montgomery county, PA (Blue Bell to be exact). She treated me with beta blockers and my quality of life greatly improved. I actually moved from being horizontal all the time to functioning. Hope this helps, Pat

I just want to thank everyone for your kindness and support. I am still trying to adjust to all of this and I am finding it difficult. I recently went back to work (teacher) and I wonder how long I can keep the pace. It is very difficult to keep drinking during the day. I guess I need a lot of patience with myself-------Pat

When I read your post, I thought of my own symptoms and story. This past March I was standing inside a classroom ( I am a teacher) and my head began to feel very strange. I forgot to mention the week leading up to this I had severe headaches everyday. I thought I should get something to drink at my desk and then I sat down. That was the last thing I remembered until I woke up in an ambulance. They said I had a seizure, but whean the hospital ran all their tests everything showed up fine. Since I have no previous history (and I am 49) of passing out --- home I went. My family dr. sent me to a neurologist who did an EEG. A couple of days after the EEG, while I was sitting on the sofa, my head began to feel very strange again. I needed to lay down, but then my I felt nausea and was in a cold sweat. I thought I was having a heart attack. I went to the hospital and again they ran tests. I was at that time mis-diagnosed with epilepsy and prescribed a high dosage of Keppra (an anti-seizure medicine). The symptoms continued and became worse. Keppra exasperated all my symptoms and added severe crying. I couldn't stand and was constantly fatigued. I went to hospital after hospital looking for help. I went to one hospital and they said I did not have epilepsy, I was having panic attacks (even though I did not feel panicked). My family dr. knowing me for many years did not agree with that diagnosis. He kept testing me and then sent me to several doctors. Finally when I went to the cardiologist and I described all my syptoms, she said I had just took a page out of a medical textbook under the diagnosis for NCS---neurocardiagenic syncope (except you usually do not get it at my age). This was just a month ago. She put me on a beta blocker 400 mg. a day. She told me to keep hydrated and drink lots of gatorade. Also I must increase my salt intake. Things have definitely improved for me. I am now able to function most of the time. There are days like today when I get the wierd head feeling and need to lay down. At times I feel very disoriented and extremely fatigued. My heart checks out fine. Headaches have almost entirely disappeared (due to the beta blockers I am told). The point to all of this is that I think you should keep searching until you feel secure with your diagnosis. Just watch your wife carefully on the Keppra. It is a very powerful drug. Let me know how it is going ---- Pat

It is kind of weird that my doctor really didn't say a thing about driving. She just acted like NCS was something I could just cope with. She didn't seem to understand my extreme fatigue at times. I really appreciate your information. Again thank you for your help.

Thank you for this information. Being new to all of this I am not really sure of how it all works. The doctor gave me a some info, but not I feel I coud use more. She said to drink lots of gatorade and increase salt, plus I am on a beta blocker. Before the incident I had been sitting for over an hour watching a movie, because I needed to rest for work tomorrow. Then all of a sudden it hit. The information about driving has me concerned, because I drive over an hour to and from work. I am hoping that because I have a stick shift the movement will stop it. Do you think this will help? I am so happy I found this forum.

Lately, I notice that apart from feeling bad when sitting, I have the reaction of feeling "exhausted" as well. It's all part of the fact that my body does not work right. I also feel extremely fatigued. It is nice to know I am not alone.

Hi everyone, I am new to the forum and I was diagnosed with NCS late this June. I was told that my bp would drop when standing still. Today I was sitting on the sofa and I could feel it drop. I had to lay down because my bp was 92/51. Has anyone else ever had it drop while sitting? Thank you for your input, Pat

Hi Dustin, I am new to this forum too. I was diagnosed with NCS late June of this year. Before I was correctly diagnosed, I had been diagnosed with a seizure disorder and put on Keppra. During this time, I experienced severe tremors, strange sensations in my head and body, and uncontrollable crying. The crying was so severe and it would happen at different times during the day. Before the crying started there was always a strange sensation in my head. As soon as they realized I didn't have a seizure disorder and they took me off the Keppra, the symptoms slowly stopped. I still get internal tremors, but no more tears. I would check the side effects from your medications. I hope things get better, Pat

Hi Jenny! This is my first post. I am recently new to the group. When I read your post, I thought of my own symptoms and story. This past March I was standing inside a classroom ( I am a teacher) and my head began to feel very strange. I forgot to mention the week leading up to this I had severe headaches everyday. I thought I should get something to drink at my desk and then I sat down. That was the last thing I remembered until I woke up in an ambulance. They said I had a seizure, but whean the hospital ran all their tests everything showed up fine. Since I have no previous history (and I am 49) of passing out --- home I went. My family dr. sent me to a neurologist who did an EEG. A couple of days after the EEG, while I was sitting on the sofa, my head began to feel very strange again. I needed to lay down, but then my I felt nausea and was in a cold sweat. I thought I was having a heart attack. I went to the hospital and again they ran tests. I was at that time mis-diagnosed with epilepsy and prescribed a high dosage of Keppra (an anti-seizure medicine). The symptoms continued and became worse. I couldn't stand and was constantly fatigued. I went to hospital after hospital looking for help. I went to one hospital and they said I did not have epilepsy, I was having panic attacks (even though I did not feel panicked). My family dr. knowing me for many years did not agree with that diagnosis. He kept testing me and then sent me to several doctors. Finally when I went to the cardiologist and I described all my syptoms, she said I had just took a page out of a medical textbook under the diagnosis for NCS---neurocardiagenic syncope (except you usually do not get it at my age). This was just a month ago. She put me on a beta blocker 400 mg. a day. She told me to keep hydrated and drink lots of gatorade. Also I must increase my salt intake. Things have definitely improved for me. I am now able to function most of the time. There are days like today when I get the wierd head feeling and need to lay down. At times I feel very disoriented and extremely fatigued. My heart checks out fine. Headaches have almost entirely disappeared (due to the beta blockers I am told). The point to all of this is that I think you should keep searching until you feel secure with your diagnosis. Also MSG makes me very ill---severe headaches and nausea. Let me know how it is going ---- Pat