jenwic

Odd that you should mention the Tylenol. I have also noticed that it sometimes helps when I'm feeling really tough. I have been having shoulder and neck pain so I have been taking Advil at bedtime to help me sleep. I have found that on the nights that I take it, I don't have the body temp. fluctuations (sweating etc.) and the racing heart in the middle of the night.

I am on Florinef and recently started taking Midodrine. The Florinef helped with my tachy spells in the morning, but not with the racing heart after meals. My dr. decided to try me on Midodrine and see if it helped. So far I cannot tell that it is helping with the meal thing. Maybe it will just take a while. Have any of you found a medicine that specifically helps in this area?

On my Midodrine bottle it says to take it three times a day during daylight hours. I have been taking it at 7:00. 12:00, and 5:00 (every 5 hours). How often do you take it?

I have been thinking the same thing. I don't know if 139/83 is too high but it definitely is high for me! I will call him Mon. Meanwhile, I have stopped taking the Midodrine until then.

Thank you all for your advice. What is EDS?

Okay, so now I have been having shoulder and neck pain in addition to POTS and so I went to a chiropracter today and he told me I have stage 1 scoliosis and my spine in my neck is too straight and also has a curve that goes the wrong way. This is the first chiropracter I have gone to. He says he would like to get me off all my meds (for POTS and asthma) and he believes I would feel much better by getting adjustments and hanging weights off my neck (traction?) Has anyone else heard anything like this?

I am now on my second day of Midodrine and have not felt as good. My blood pressure has been in the 130's (as high as 139/83). My pulse is still good but today I have a strange feeling in my head and a little headache. As for the hot weather, when I was in the hot sun yesterday, the top of my head felt more tingly than when I was inside.

I started taking Midodrine today (5m.g. 3 times a day) and I noticed my blood pressure is slightly higher than normal. I think it is still safe at this reading (varying 119/74 to 128/79). I think it is helping my heart rate and I am excited about that. My h.r. used to run 96-100 sitting down after a meal. Today it was 86 after a meal and 71-78 at other times. It also seems to be helping with postural tachycardia. The side effect I noticed is the goose bumps on the head problem. I can tolerate that if it helps with the tachy. Do you think the b.p. is o.k. at this level? Thanks!

I have asthma too and cannot use Albuterol. I used my son's nebulizer once with Xopenex and my heart raced for 12 hours. I use Pulmicort (2 puffs at night) and when I get a cold I add 2 pufs in the morning. I cannot take Singulair because for some weird reason it makes my heart race too. I'm very sensitive to medications.

It seems that we all have varying degrees of what we are able to tolerate. For me, my husband and I have stopped having intimate relations at night because I get alot of adrenaline rushing through my body and can't sleep for hours afterwards. I offered to "pleasure him" at night without intercourse but he doesn't want me to be left out so we now only are intimate at other times of the day (the later in the day the better). I try to drink a lot of water beforehand. We have layed awake many nights discussing this topic. I used to avoid going to bed until he was asleep but always felt guilty. Now that we openly discussed it things are better. However, I still feel shortchanged sometimes because the desire is still there. Jenny

I can totally relate to all of you! Since I was recently diagnosed after 13 years of suffering without knowing what's wrong and now I'm excited to finally be able to tell people what my diagnosis is. But when I do they get a puzzled look on their faces. Then I launch into the description of what POTS is and I can tell by a couple sentences into it that they are already distracted and thinking about something else. What really bothers me is if I just need to go to a regular doctor or the emergency room for some reason no one knows what POTS is or how to treat me. Shoot, even the dr. that diagnosed me doesn't seem to understand it that well. Sometimes at night I start talking to my husband about my symptoms or feelings and then I hear him snoring!!! I guess he hears about how I feel so much that he tunes me out. It is so frustrating! Jenny

Since I started taking Florinef I have been having this pins and needles in my hands every so often that feels like when your hand falls asleep. I especially notice it when I run water over my hands when I'm washing them. I wondered if it was POTS, the medication, or something else. I have also been having a pain in my neck or shoulder for over a month and so it could be related to that. I'm just trying to sort this out.

I have this feeling often when I'm trying to go to sleep at night. It wakes me up when I'm almost asleep.

Thanks for the reply. I won't give up on it yet then.

I started taking Florinef 3 days ago. So far I don't notice much water retention and my POTS symptoms are just as bad as before. Does it take a while for this med to work or do you think it just isn't going to work for me?

I took one pill last night and one this morning. Last night I couldn't sleep (maybe 1/2 hour of sleep total). My heart rate was up (nausea?). Today I am basically the same. My HR is higher than usual and I feel wired and at times a little queasy. I did feel better for a while today when I had my Sea Band bracelets on ( they are for nausea). Does it take some time to adjust to Florinef? Is nausea or a fast heart rate (potsy feeling) normal with this med?

I have been struggling with these symptoms for 13 years. I have been to tons of dr.'s and had all kinds of testing done. I saw an electrophysiologist in Cincinnati who confirmed what I have thought for 3 years now-POTS. I took my first Florinef pill tonight. I hope it helps! I seem to have a very sensitive body to medications. I thought my heart would explode when waiting to see him today. As I was sitting in the waiting room I got so nervous and I kept having these major adrenaline rushes that triggered PVC's. I feel really wiped out now but happy to finally have a diagnosis after all these years.

Most definately! I can't watch any scary or exciting movies or shows. Even exciting books get my heart rate up.

I have been under a lot of stress lately since my dad was diagnosed with lymphoma and I have been trying to get a diagnosis for myself. When I have a stressful or scary thought I get a wierd feeling in my heart. It is not skipping or adding a beat. It feels like a shot of adrenaline or electric or something shoots straight into my heart. If I get enough of these feelings too close together then I get tachy. Has anyone else experienced this?

Thank you! The last dr. I saw was possibly wanting to do a sinus node modification at some point. I know that that's a no-no. Hopefully this new dr. will know what he is doing. His name is Schloss and he is in Cincinnati.

I went to an electrophysiologist last month and he had a tilt table test done (among other tests). The problem I ran into was that it turns out he is not on my insurance list of dr.'s so I am going to go to a new one. The old dr. sent my test results directly to me to take to the new dr. This is the first time I have seen them. Here is a quote from the tilt table results: Prodedure: "Baseline heart rate and blood pressure were recorded at 116BPM and 120/80. The patient was then subjected to 80 degrees upright tilt table testing for a total of 30 minutes. Upon tilting, the patient's heart rate immediately increased to a maximum of 170 BPM while maintaining normal blood pressure. The patient did feel sick to her stomach. She was returned to the supine position with complete resolution of symptoms" Impression: "Significant orthostatic sinus tachycardia response without significant drop in blood pressure. However, there still remains the possibility that this could be a variant of postural orthostatic tachycardia syndrome. Clinical correlation is advised." What do you think?

I have been having weird temp. variations at night. I have a hard time sleeping because I will wake up cold one time then later on I will wake up hot and sweating. Does this go along with POTS? I don't think it's a fever because it has been going on for over a year.

It helps to know I'm not alone- or crazy

Not every night, but about 50% of the time I will wake up in the middle of the night as if in a startle and my pulse is flying and I feel nauseated. It takes me around half an hour or more to get settled down to go back to sleep. Sometimes I get the same symptoms in the morning, but it's usually in the middle of the night.

Thanks Melissa. Glad I asked!