khaarina

I don't know if it is the same thing but for the past 6 or so years I have occasionally had a very sharp pinching feeling in my right shoulder. Through trial and error I eventually figured out that it will go away when my husband just barely presses the right side of my upper spine on a specific spot. I feel a little click, as if it is shifted back into place and the shoulder pain disappears. I have had two spine MRIs since I have been sick and nothing showed up as far as I know so I have no idea what the cause is.

I tried Zyrtec and Claritin (generics). Both were fine, but Claritin is cheaper.

P.S. I am also taking 25mg Benadryl before bed. It is the only thing that helps me sleep. I suspect it has something to do with it being and antihistamine in addition to being a sedative.

I'm taking Claritin and it helps some with the skin stuff. I still get flushing a lot, and minor rashes sometimes, but it helps. I also had a lot of sinus problems and it practically eliminated that. It is hard to say that it has helped with the heart rate and blood pressure spikes because my symptoms change so much from day to day (and hour to hour!). I cut it in half and take half in the morning and half in the evening. If I forget to take it I start to sneeze within a few hours. A built in timer, I guess lol. If your docs says go for it, I would give it a try. I haven't heard of antihistamines negatively affecting people with POTS. It is frustrating to have to keep taking new pills and treating symptoms without truly knowing why they occur, but it is a huge relief to see some of those symptoms go away.

I also have had a hard time giving up hot showers. I not only get symptomatic in the shower, but I also lose my balance and fall a lot. It is super dangerous and I have come out with some major bruises. The hotter the water, the worse it gets. So frustrating!

Yep, sometimes my HR goes into the 130's after eating. It always gets higher after eating, how high depends on what I am eating and what kind of day I am having. Watch out for restaurants. Being out and upright with feet down can really add to the problem, especially since eating out usually means eating heavy, greasy, or otherwise unheathy food.

It is probably your menstrual cycle. My symptoms are always worse during my period. My primary doc put me on birth control pills to help balance my hormones. This helped some but I still get worse during my period. A couple of days ago I woke up and I was so dizzy I could barely get out of bed without nearly vomiting, then I started my period the next night. I am positive it is related.

I wouldn't expect it to help with emergencies because it can take anywhere from 20 minutes to an hour to start working, in my experience. It is, however, a drug that I wouldn't want to live without. Before Midodrine I was sick all the time, even lying down. Now I have a semblance of normalcy as long as I am resting and keeping cool. Starting with half is a good idea. Try not to worry too much. You can always monitor your heart rate and blood pressure while it is in effect and if you don't like it, it will leave your system within about 3 hours.

I've heard conflicting information on caffeine. I don't mean to suggest that you go against your doc's orders, but you may want to look into it more. My cardiologist told me to stay away from caffeine but I have found that while too much caffeine does make me fee bad, a little caffeine makes me feel better. I believe it is because it is a vasodilator. The extreme fatigue I get is pretty crazy. It washes over me suddenly and I feel like a rag doll, can hardly keep my head up. I drink a cup or two of tea and it helps. Getting cold helps a little too. I don't like to be cold, but when I am really wiped out I will lie down in front of the fan or take a cold shower and it gets my blood flowing better.

A swollen thyroid can also cause swallowing problems. Another possible cause for these symptoms could be acid reflux. If acid is constantly getting up in the throat it can cause similar problems. Anyway both are typically easy to diagnose and treat so it is very much worth looking into.

Have you had your thyroid checked? If your thyroid is swollen it can cause voice changes. It happened to me before I got diagnosed with Hashimoto's Hypothyroidism. It resolved a few months after I started treatment for it.

What did you tell the judge when he asked why you think you can't work?

Yeah, it lasts about 3 hours. You will know when it kicks in (tingling scalp, goosebumps) and you will probably be able to tell when it wears off. For me, Midodrine isn't enough to compete with my standing/sitting symptoms, but it helped me feel better in general and that means a lot to me. I started at 2.5mg 3/day, now I am taking 5mg as needed (usually 2-3/day) It gets my blood flowing and reduces my heart rate. It has significantly improved my quality of life, I hope it does for you as well. You may want to keep and eye on your heart rate at first. Midodrine can cause it to go down a lot when you first start taking it. Also be sure to avoid lying down while you are on it (or at least monitor your bp if you do lie down) because it can significantly increase your blood pressure while lying down. This didn't happen to me until I went up to 5mg, but it could potentially happen at any dose.

I also have had reoccurring unexplained pains in my left arm for the past two years, since I got got sick with POTS. Have you been able to figure out what that is? Can you describe yours? Mine is like a getting a shot in the muscle. I used to get birth control shots every few months and if feels just like that. They even did an x-ray on my arm because it had gone on so long, but nothing came of it. I skimmed through your past posts and it looks like you have a lot of the same symptoms I do. Itching, high bp spikes, nausea, sweating, etc. I did really bad on Fludro. It made me feel really swollen all over and icky. Doesn't mean it will do that to you, but keep an eye on that one. A couple of your symptoms sound like GERD to me (I'm no doctor though). Before I realized I had indigestion problems I had a feeling that something was stuck in my throat or that my throat was swollen, and I also had a lot of nausea, vomiting, hiccups, choking while swallowing drinks, and a fluttery feeling in the middle of my chest (not heart palps, though I had those too). Have you had any other indigestion related symptoms? If you do have GERD, getting treatment for it can help you differentiate the heart stuff from the indigestion stuff. Sometimes they are very hard to tell apart when you have both.

Anoj, you may be right. Maybe having the word fatigue in the title would make some doctors huff, but those would be the doctors who are probably already blowing us off anyway. It is the well-meaning doctors I am concerned about. The doctors like mine who really want to help but just don't see the connections. Those are the doctors who are more likely to connect the dots when they hear a word like fatigue. When I described my overwhelming fatigue to my doctor before I was diagnosed, he brought up chronic fatigue syndrome as an option, but not POTS. Why? Because POTS is postural, as far as he knew at the time, and I was sick no matter what position I was in.

I wholeheartedly believe that if POTS had a more accurate label, my doctor would have recognized it sooner. It took a year and a half of countless tests and specialists before I was diagnosed with POTS, because neither me or my doctor realized that posture played a significant roll in my condition. Yeah, I felt better when I was resting, but doesn't every sick person? It is not always as clear as it seems. Maybe it is too much to ask that all doctors suddenly familiarize themselves with the disorder right now. Obviously that is going to take time. But giving it a title that points doctors to the right diagnosis, that would be huge for those people who are sick every day and still don't know why. They should at least put fatigue in the title, I mean, come on.

Yola, I see you are taking Florinef. Does it help you? I tried it before I got put on Midodrine and Florinef made me feel awful. It increased the pressure in my arms, legs, and head so I to stopped taking it. I have thought about trying it again now that I am on Midodrine because I always feel so dehydrated. P.S. I only pass out if I push myself past my limits during TTT or Poor Man's TTT.

Heck no, I have symptoms all the time. Before I got on meds I was sick all day every day, whether I was standing, sitting, or lying down. Of course standing made my symptoms worse but I didn't know it. Sometimes, before I got diagnosed, I took hot showers to try and calm myself, thinking it might make me feel better, ha. POTS is a misleading title. POTS is so much more than tachy while being upright. I would not be surprised if it gets changed once the medical field becomes more educated about the disorder. Maybe if the title better represented the disorder, it would come up more often in the doctor's office when a person complains of fatigue, insomnia, nerve pain, etc.

Unfortunately, no I can't handle a desk job. I can only sit up (with my legs up) for about 30 minutes before I have to lay down. No one is going to hire me like that. I'm sure the lawyer I spoke with was just weeding out the hard cases, which means he is probably too busy to work on mine anyway. It's just hard because I used to bring in half our income and now with medical expenses and loss of income, I am a financial burden. As if that isn't bad enough, I've got SSI telling me that I am capable of working, despite all I have told them, like they know what it is like to be me. I wish I could find the person who denied me and explain that I want to be well enough to work. I am sick of my house and my bed. If I could work I would be working, not squabbling over what little they have to offer.

After getting denied SSI for the second time I called a lawyer and he blew me off. He said that because I am only 32 and I have a college degree the SS Admin assumes that I should be able to find a job that will work around my health condition. What a bunch of crap. No one is going to hire me if I have to lie down every half an hour, educated or not! I am so sick of dealing with these people.

When I stand up I get hot, shaky, sweaty, dizzy, short of breath, tingling in my hands and feet, ringing in my ears, I forget things and just feel like I can't think properly, my lower arms and legs feel hot and swollen (blood pooling I guess), sometimes my veins get bright blue and bulge in my hands and feet especially, my feet get blotchy looking, sometimes I feel nauseous and get heartburn and hiccups, and I often sneeze and get a runny nose. This all happens within about 4 minutes usually. If I stand long enough I will pass out. Just before that happens I feel pressure in my head and I feel like I can't hear properly, like when water gets in your ears. The symptoms I get while sitting are about the same, but they usually come on more slowly and I am not sure that I would pass out while sitting. If I sit after standing many of my symptoms are relieved temporarily, but not for long. If I sit up after lying down I usually get an overwhelming feeling of fatigue as the other symptoms are coming on. If my arms and legs are down, it is worse.

I think the problem is that many of us look healthy at first glance. People would have to look more closely, and know what to look for, if they wanted to see the changes in my physical appearance, the bulging bright blue veins, the excessive sweating, the unbalanced pupil dilation, the way my weight is distributed differently since my thyroid and other hormones got out of whack, but most people make judgements based upon their first impression, they don't bother to look deeper. Of course we don't actually want to look sick, but I am sure as **** sick of having to prove to people (doctors included) that I really am sick.

The primary who diagnosed my POTS finished his residency and moved on, now I have to find a new one. I have so many concerns: Will he/she be overwhelmed by my massive file and book-long list of symptoms? Will he/she know what POTS is or at least be willing to learn? Will he/she get defensive when I try to explain what I know about my condition? Will he/she take one look at me and decide I am a nutcase? As we all know, most doctors don't know about or understand POTS and they don't have the time to read up on it. Why should they waste their time trying to figure out my condition when it would be easier to just assume I am crazy? I would like to say that doctors are better than that, but I know better. Does anyone have any suggestions for making this run smoothly?

32, 30 when symptoms started

Gatorade doesn't help me. Sometimes I actually feel worse after drinking it. I think it is all the sugar. Water is the best thing for me to drink. I get tired of it, but I have found that straws help encourage me to drink more, I don't know why. It's the kid in me, I guess. So I got one of these: http://www.walmart.com/ip/Set-of-4-XLG-Blue-Green-Polka-Dots-Insulated-Tumbler-Cups-with-Lids-Straws/26513580 It was on sale for $5 at Wal-Mart, and I take with me everywhere.