Deb

Hi Laila, I don't have the exact symptoms as you, but as soon as I wake up each morning I start trembling. It happens when I first go to bed and during the night some, too. I also get the sweating. I don't know if it's anxiety or what. My heart rate seems to be pretty stable, now. I don't think my BP is though. I'd like to get a monitor to see if it goes up and down during the day as I suspect it does. I take a .5 tab of Lorazapam and my midodrine with a large glass of water before I get out of bed. I wait at least 15 minutes for the midodrine to start working so that my BP isn't too low. The Lorazapam works for the trembling, but not completely. I tremble slightly off and on for most of the morning. I tried not taking the Lorazapam, but I trembled all over all day. It was horrible. I couldn't do anything for more than a few minutes. So I went back to taking the Lorazapam. I'm also taking Zoloft. I'm hoping that when it reaches the peak dose in my body that I won't have to take the Lorazapam any more. If indeed the trembling is caused by anxiety. If it's something else, I guess the Zoloft won't change it. Good luck with your new doctor. Let us know what he/she thinks the trembling is caused by.

Debbie, all I can think of is - You go girl!!!! I had to do the same thing. I decided I wanted my life back and I wanted it on MY terms, not others. So I do what I can when I can. My husband completly understands and backs me up, most of the time. He only disagreed with me when I said it was time for me to start driving again. I know when enough is enough, and I politely say, I need to sit down, and I sit down. No apologies. I do try to avoid being in a situation that puts me in a postition where I can't sit or rest somewhere. The worst is going shopping with someone other than my husband. I did that once, and believe me, it won't happen again for a long time. It is hard to deal with sometimes because I used to go hiking, and was very active. Now I find joy is doing the grocery shopping alone. Ahhh, there's better days ahead for us, I know it.

Hi Nina, I have the allergies and asthma, too. I've been on the 250/50 Advair inhaler for a year now, and I can honestly say that my asthma has never been better. My chest never feels tight anymore. I did have bronchitis this past December. The first time in a long time. I believe I caught it in the waiting room in the ER. I lived on my albuterol inhaler, and I did take a short three day course of prednisone. The cough and chest tightness lasted awhile, but I was able to stop using the albuterol after about a week. I also used a cool mist humidifier. It seems to help with the breathing. I also used warm towels on my chest. I was completely cleared up a month later. Hope you feel better, soon. Deb P.S. I am not POTS medicine free, but I hope to be one day.

I belong to Webscape, too. When I registered, I didn't have to pose as a medical professional. I listed myself as a medical employee, I think. I work in a Medical Center so I am a medical employee. I have found many interesting articles there. I read the one that Nina posted. It's really encouraging for those with constipation IBS.

Wow! I firmly believe that what goes around, comes around, but I'm referring to the good things! You must be a very good person, too! Hope the SSRI situation improves!

I wish I could help you sort it out, but I can't sort out myself. I've started to write what symptoms I have and what could be causes them so that when I see my doctor next, I have a plan. I cry almost everytime I see the neurologist. I can't figure out why, but I think it may be that I want him to tell me that all of these swings and emotions and panic attacks are really symptoms of POTS and we'll increase or decrease something to make it go away. But what really happens is he says that the POTS is under control and the other symptoms are due to anxiety disorder. Okay, anxiety is a symptom of POTS, so now I see a psychiatrist to help with that part, but when will I stop having anxiety problems?Will it ever go away? Yes, I'm melodramatic too. I get teased about that. Sometimes I'm told to chill out. You know what, if I could "chill out" I would have!!!! I can't stop my reactions. Afterwards I can redirect them somewhat, but the initial reaction is almost always overblown. Ahhg! I don't think I helped you at all. I wish I had more answers.

Ahhh, but is there a specialist for IBS-D? I'm going to be seeing an IBS specialist at UVA Medical Center. I can't stand this anymore. Deb

Oh Paige, I'm so sorry you had such a bad day. It can be so hard to pull up out of it. For the short term it sometimes helps to think about the good things that you do contribute like being a mother to your baby and a companion to your husband, and then think how terrible it would be for them if you were not there for them. You'll have better days again. This is temporary. I didn't know what was wrong with me when I started crying over every little thing, and thinking that nothing gave me pleasure, and wondering why I was even alive. Then I thought about my kids and husband and parents and then good thoughts started to come back. But I really had to work on it. I chose to think positive. It took me months to realize that I really needed something to help me with that. I started taking Lorazapam twice a day for the first few weeks while I was also started on Zoloft. Now I only take the Lorazapam once a day. When I get to the recommended dosage of Zoloft, I probably won't need the Lorazapam any more. I did an experiment and did without the Lorazapam, and what a difference there was. I was a basket case again. Starting Zoloft caused me to be more symptomatic, and each time the dosage is increased, I feel worse for a few days. But, in the long run, I think it's going to be worth it. I feel so much better. Hang in there. Keep writing and sharing. Everyone understands what you are going through.

Well I've gone almost a week now with my coffee trial. I've been having coffee in the morning, 1 to 2 cups, and the sleepiness/fatigue I was experiencing each morning around 9 or 930 hasn't happened, except for today. But I was wired up last night and couldn't get to sleep at my normal time, so I think that's to be expected. I believe the coffee is working because I think my blood pressure is droping around that time. I'm now taking my Midodine (to increase my BP) at 5 am, 1030 am, and 4 pm. It seems to help keep me alert in the afternoon. And, I think I am sleeping better, overall. I used to get really strong heart beats when I laid down at night, but those are much less now. I think I needed to give the Midodrine more time to leave my system. I changed the times that I was taking the med. because I read that BP usually increases during the day, so I think it might have been too high in the evenings.

Hey there Lem123, I believe you spelled the medication wrong in your message, correct in the title. I looked it up, too and its used for Benign Prostatic Hyperplasia. Flomax is also called Tamsulosin and is used "to reduce urinary obstruction and relieve associated manifestations in hypertensive or normotensive patients with symptomatic benign prostatic hyperplasia (BPH, benign prostatic hypertrophy). Tamsulosin relieves mild to moderate obstructive manifestations (e.g., hesitancy, terminal dribbling of urine, interrupted or weak stream, impaired size and force of stream, sensation of incomplete bladder emptying or straining) and improves urinary flow rates in a substantial proportion of patients...." This came from Medscape. If I had your problem, my daughter had it, I would take the medicine.

Hi Steph, I was probably low in potassium when I had the episodes, but I don't know for sure. It's hard for me to keep it at a normal level. I eat all the right foods AND take supplements, but I also suffer from GI problems. The supplements frequently just zoom through my system completely undigested. They are yellow and very visible (I don't want to sound too gross!). Anyway, I haven't had any muscle testing. I was tested for epilepsy, which was negative. All of my doctors think that it was a combination of a reaction to Paxil that was exacerbated by too much Midodrine. The Paxil caused my anxiety to be MUCH worse so basically what I had was a panic attack that was made worse by high blood pressure. I have POTS and one of my symtoms is low blood pressure. The Midodrine helps that by raising my blood pressure so that I don't faint. The Docs cut the dosage in half. A couple of weeks after I was weaned off of the Paxil, I stopped having the seizures. I am on Zoloft now, and I feel much better. However, I still shake and tremble a few hours almost everyday. The other medicine I take is Florinef. It's for the high heart rate. I was bed-ridden with the tacycardia before I started taking the Florinef. It took a couple of weeks to work, but when it did, I was like a new person. I was still far from what I had been, but a lot of my strength and stamina came back after about three months. I wish I could help you with the brain fog. I seem to have it less when I eat smaller amounts and more frequently. It was an accident that I discovered this. I started it to help my GI problems, and then it dawned on me that I didn't have the brain fog as often. I only had it once today, and only for a couple of minutes. It actually was one of the scarier times. I was reading an article on my monitor and making notes when it hit me, and I could not focus at all for several seconds, and then when I could see, I didn't understand the words. I've also had it happen when I was in my car going somewhere, and then I couldn't remember how to get there. The brain fog that I've been having is different then it has been. It used to be kind of like being in a fog, hence the word I suppose, but now it's more like a state of confusion. It feels the same way when it starts, like my head is sort of floating and yet it also feels heavy. And time feels like it is slowing down, and noises seem far away. But now I get confused. I haven't talked to my Doctor about this, so I don't know if this is normal or not. My sweet brother said it's old age!

That was a good tip about the makup, Lou. I only use a little eye makeup because I have eczema, and I'm sensitive to almost everything. So for those of you who also have trouble with skin products, I'd like to share the brand of facial products I use. It's Origins, which is a product line owned by Este Lauder. They are also all natural without any perfumes (that and preservatives burn my skin). They are very expensive, but a little goes a long way. Plus, it can be removed with water. Since I cannot use any soap products, I usually only wash with water. It's not as gross as it sounds. I use a special cleanser called Aquanil a couple times a week, but it's surprising how clean I can get with just water and a soft washcloth.

Hi Pam, I don't remember how mennengitis is spread, but I read part of an article in a magazine in a Doctor's waiting room recently that scared me. Mennengitis makes you really sick, really fast, and is often fatal. If I was in your situation, I would talk it over with my Doctor. That's my two-cents worth!

I don't remember having dark circles. I usually am very pale when I'm not feeling well. My friends always comment on it. They also comment on when I'm looking good, so I guess it evens out! I do have bags under my eyes that get worse when my allergies are worse, and also when I need more sleep. I've always had the bags. My doctor told me years ago that people with a lot of allergies tend to have bags under their eyes.

I can only answer the first question. I've had the muscle spasms all over my body, and afterwards they ache and hurt terribly. I had severe shaking in the ER for more than an hour one day, and I was a mess. I could barely walk. Most of the pain is gone in two days. Sometimes afterwards, some of my muscles burn, but not usually.

I am basically like Sak. I have to drink a lot in the morning to feel good the rest of the day. I also put 1/2 teas. of salt in one of my glasses of water. But not long after I drink, I have to go. I usually last about an hour between times. When I get the feeling, it's pretty much an urgent feeling. Same when my bowels move. Go figure?

I was on a beta blocker for about a week. It was before I was diagnosed with POTS. It made me feel horrible because it made my blood pressure too low. If you aren't feeling well, I suggest you get your blood pressure checked and also leave a message for your doctor about your symptoms. He/she will probably want to see you. Low blood pressure can be very hard on your body.

Hi Ladybug, I don't think Prozac works differently than Zoloft. They, along with Paxil and Celexa are SSRIs. They are used to treat hypotension and syncope. But, some people do better on one than another. Zoloft is used for depression, panic disorder, post traumatic stress disorder, to name a few. I couldn't take Paxil. It made my seizure episodes MUCH worse. In fact they started while I was on Paxil. I seem to be able to tolerate Zoloft better. Those are the only two I've been given to try. I have noticed that when my dosage is increased (with the Paxil and the Zoloft) that I have several days of shaking and trembling along with some numbness in my fingers and toes and, this sounds weird, I also have sharp pains that hit my right big toe, or my right hip or my right eye. Thankfully it doesn't last long before my body gets used to the increase. I hope you find something that will help you. I'm still trying to connect food with the episodes, but it's hard because I also have diarrhia that I'm trying to find a trigger for, too. Even with all of the things that don't work quite right, when I have a day that I feel good, it's like a present. Good Luck!

I am so sorry April that you are having such troubles trying to get your leave approved. I was in the hospital and terribly sick when I started my paperwork. They didn't doubt my illness and my need to be on leave, but it was the same thing with the paperwork. They needed this and that and it had to be right away. Fortunately my doctors were able to provide what they needed because I was in no shape to do anything about it. Ironically, I had the same trouble trying to go back to work. I had to fight to be allowed back. I had to get all kinds of things to prove that I was fit for duty. Looking back on it, I wish now that I had stayed off longer. I get so tired during the day, and the brain fog is awful. Plus my hands tremble off and on for a few hours every morning, so it's hard to type. Once you get approved, stay off as long as you can. I wish I had.

I've been experiencing trembling and shaking episodes that resemble seisures except that I am fully cognizant when they happen, even though I usually can't talk because my head and or my jaw are shaking so much. And they always start on my right side. I had all the tests to rule out epilepsy, etc. so I know my heart and brain and lungs, etc. are okay. Most of the episodes happen at home, but I've had three at work. I was taken to the ER twice by my co-workers because they were scared that I was having a swizure. I also saw my POTS specialist at UVA, my GP, and a psychiatrist. Each of them said it was anxiety. I was so upset by this that I had resolved not to mention the episodes any more and hope that I didn't get any more at work. How silly is that? I really wanted to find another cause for the episodes, so I started searching for everything I could find about POTS symptoms. I have learned a lot about POTS and that each person is different, and yet very similar in their symptoms. And, after reading everything I could find, I have come to realize that POTS has changed my body. It isn't the body I had two years ago. I react differently to things now; more precisely, I overreact to things now. And isn't that what anxiety does to a body? Cause you to overreact? When I have one of the seizure-like episodes, it always starts out with a feeling of lightheadedness and then my heart rate jumps up and I feel like I can't breathe, and then the trembling starts. That is almost classic panic attack symptoms. I resisted this diagnosis vehemetly, as many of you have, because I am such a laid-back, easy-going person. I don't hold grudges or get stressed out so it was hard for me, my husband, friends, and other family members to believe, much less accept, that I had an anxiety problem. But you know what? I do have an anxiety problem, and many, if not most people with POTS do. I have finally accepted that and I think those shaking episodes are panic attacks, just like the doctors said. Some of you have written that you have these episodes, too, and they seem to be triggered by things like foods or over-exertion, but I wasn't able to find a trigger for mine. For me, I think it's anxiety. I am finally starting to feel a little better. I was put on Zoloft about six weeks ago after the psychiatrist diagnosed me with anxiety problems. I started with 25 mg and then went to 50 and then 75, and I just upped it to 100 mg. And you know what? The shaking episodes/panic attacks have lessened up, and I've gotten back to my cheery self again. I'm not so blinded that I believe I am cured or anything so simplistic, but I am so hoping that I'll have a few more good days now. I hope that this helps some of you that have been resisting taking SSRIs. What helps me won't help everyone, but it may help some. That's my hope for you and my reason for sharing this story.

Hi Carla, I have the same thing. I am completely guessing, but I think in my case it has to do with the midodrine wearing off. I take my midodrine at 5 am with a large glass of water while I am still in bed, and then get up at 5:30. Midodrine only lasts about four hours. I start getting sleepy around 9 or 9:30 almost every day. I think my blood pressure goes down and that causes the sleepiness. I can take a walk, but as soon as I sit back down, I start falling asleep. I also feel very heavy, like I'm underwater. This lasts anywhere from 30 minutes to an hour and a half. I was doing some research about POTS a few days ago because I have these periods of brain fog that are really hard to deal with at work. I found an article written by a doctor who specializes in orthostatic hypotension which is my biggest POTS problem. In the article, the doctor suggested drinking coffee at breakfast and lunch to help with the low blood pressure caused by the blood pooling in the gut. So, this morning I had a cup of coffee with breakfast and iced tea with lunch, and it is the first time in a couple of weeks that I didn't get sleepy or have an episode of brain fog. I don't know if the coffee and tea helped the sleepiness or prevented the brain fog, or if I was just having a good day but, I'm going to try it tomorrow and Sunday while I'm off from work to see how I do. I'm not suggesting that you or anyone else try this, but I believe it's something to talk over with your doctor to see what they think.

Sue, Who could contain a smile after reading your happy message?! So glad you had a good time today. I must say I'm a little jealous that you can sleep twelve hours at a strech! Sleep well and take care. Deb

I'd like to know more about the symptoms that Provigil is supposed to help relieve. I have fatigue, too, but I also fall asleep during the day. I just get so tired that I have to put my head down and sleep for a few minutes. Deb

Dawg Tired you have a perfect name. I've found this chain of postings interesting because I didn't connect my terrible sleeping (or lack of) with the POTS. For as long as I can remember I have awakened several times during the night. I usually roll over and go back to sleep. And in the morning I usually felt rested. In the past year or so I've noticed that I haven't been able to sleep in past about six-thirty. I just wake up and that's it unless I had a really restless night and then I can sometimes catch another hour. But I just realized that since my POTS symptoms got worse, I wake up around midnight and then three and then five and stay awake for several minutes. And I still have all the additional times that I wake up for a few seconds at a time. I go to sleep almost right away, I just can't seem to stay asleep. Is this something I'll have to deal with forever? Or is it one of those symptoms that comes and goes? I have to take a short nap almost everyday around nine or nine-thirty because I just can't keep my eyes open. I was hoping this was just part of the healing process after being so sick a few months ago. Any thoughts?

I can't help but think that someday someone will find a correlation between people with allergies and people who contract dysautonomia. I have all sorts of allergies and am super-sensitive to so many things that it just seems to me that getting POTS is somehow related to my over reactions to things. Perhaps in time we'll find out.