RockiesGirl

Are we talking a 10 minute standing test or the 10 minute stress test???

I have this too It was the only way I was finally diagnosed in the hospital. Doctor came in to check on me. I sat up in bed, my HR went from 69 to over 120. I looked at the machine and said 'Oh, it does that when I sit or stand up.' I thought the Doc was going to dismiss it but he immediately started doing tests. He said I think you have POTS Syndrome but we need to test further etc etc. But it certainly makes one feel out of whack when sitting up.... Don't understand it either

I find that I can drink Red Wine only and in small quantaties. Sometimes it actually makes me feel better for a little while AND it is the only thing besides the bathtub, that warms me up. Usually my hands and lower extremities are ice-cold to the touch, but give a glass of wine and finally they turn semi-warm. I usually sip a glass of water (no ice) along with it. As long as I only have 2 glasses in about 4-5 hour period I am fine...Any more and I'm sunk. Feel Lousy All other alcohol even white wine does not go very well either.... Hmmmmmm, is anyone else like this? I haven't ever tried Brandy???

To be honest I don't really know. Mine is sometimes on my right side, close to my sternum but about 6 inches down from my clavicle. But it is always good to get it checked out if it is really bothering you ;o)

I have this too ;o) Sometimes it is also hard to breath.... Docs say it is because the blood is pooling around my heart in the veins?? But it is nothing to be alarmed about?? It really hurts on occasion

At least I now have an answer for all of this. My ex mother-in-law who passed a few years back said I had some of the most interesting vocabulary she had ever heard. She was an awesome Woman!!! It all became a joke when I was in my twenties. For the life of me, I can't think of a word...a simple word. I can describe the items ie; "go get the thing that pays for stuff" or "can you start the thing that washes the dishes" or "we need to get into the thing that drives us places". Now that I am on my Meds (beta-blocker)sometimes it feels like time passes very quickly. Example: I was at a Lacrosse game the other night & I wasn't too stoked about being there. The room seemed to be smokey but when I asked about it, of course it was just me. Before I know it, the game was over and I was asking about the 3rd an 4th Quarter...but they had already been played And like several others I stop mid-sentance and the topic I was talking about goes away. It comes back usually, but it takes a while ;o) And like everyone else it seems I go into a room and for the life of me, sometimes I can't remember why I am in there.....

It seems to help me too I notice a big difference when the fan is off and sometimes I prefer it that way, but when it is hard to breath for some reason it helps ;o) Just me 2 cents!!!

Does anyone else periodically run a low grade temp? Had one last night again. 100.3. No reason that I can think of. No cough, sore throat, no sinus stuff etc. I once had a low grade fever for almost 7mos. It never was over 101.8. That was 4 years ago and the docs couldn't figure it out. Sure makes me feel like poo. But usually my body temp is low? Just wondering if anyone else experiences this?

You might wanna buy some ear plugs so that everything isn't so loud. It helps me sometimes. Good choice on the seat arrangements too!! Sometimes raising my feet a bit helps so you might wanna consider a big blanket or 2. 1 blanket to prop your feet on and 1 in case you get too cold. Also, do compression hose help you? Keep water with you.... Just some random thoughts, hope they help and you enjoy some date time with your hubby

For as long as I can remember I have referred to this as a 'Charlie Horse in my Neck'. When it presents it is slightly visible and it is palpable. My kids used to think it was 'cool', but it can be very uncomfortable. I've mentioned it to several Docs but I get that blank stare Imagine that....

So sorry to hear now that you have an answer the solution or help is such a hard 'pill' to swallow!! I did not realize..... More prayers and hopefully they can figure out a different avenue ;o)

So happy you finally have it figured out!!! Prayers and encouragement your way

Good Morning Issie; Where can I find Ashwagandha? Sometimes I sleep wonderfully and then other times I can't get to sleep until almost 4 in the morning. Makes for a very long day at work the next day

Would like to know more about this.... Keep us posted please ;o)

Sometimes it is like looking through fog or across a smokey fire pit...others it is like looking through Saran Wrap and still others little black or white stars. Is that what you are seeing??

Glad you have found us I have found this site to the most helpful and informative of all the sites. People respond with kindness and helpful information. I guess we're all in the same boat so it helps. I was just diagnosed in January so I am constantly learning and reading everything I can. Hope your TTT goes well and keep us posted. Take care, Michelle

I get this too. My doctor told me it is because blood is pooling around my heart. I guess the correct messages are not being sent from my nerves and brain to my heart. But sometimes it is really painful. Sorry to hear you all have it too. Hope at some point in time they can figure it out ;o)

Well my BP is normally in the 110/60 range, but under Doctor instructions lately I have been taking it only standing up. Yesterday, I was having a Yuck moment of stomach pain, dizziness, feeling faint and I went over to the machine....it errored 4 times before I finally recvd. a reading of 64/21. No wonder I felt like poo But then I sat down for a wee bit, took my BP 2 hours later and it was 98/79??? Who knows..... Just another crazy day in the ol' POTS world ;o)

Hi there; I had my blood tested at an allergist clinic. I am allergic to wheat. Hence, no wheat...but you can't imagine how many products have wheat in them. It has only been 4 weeks since its ellimination so I'm not quite sure if it is helping yet.

I have posted this several times on other sites as well and it was quite eye opening to see how many of us are Vitamin D deficient. I also have low Blood Calcium and low Magnesium. But my Vitamin D is lowest?? Now how did that come about? I too am on supplements. I have asked about 20 times...do you think this could be part of the problem? Do you think it is all inner-connected. Usually I get a blank stare in return. BUT at least the Meds are helping

I have tons of fillings and all were amalgam but I have had all of them replaced but 2. Also have lost a tooth becuase of breakage now have a titanium rod and dental implant. Like several my mouth has cost as much as a small house ;o) But I guess compared to the Doctor bills.... Hmmmmmm

In the last year I have passed out completely about 11 times. It is scary...the worst was at a Baseball game when everyone was going home and filing out of the arena. As you can imagine, at a public place like that it meant a trip to the emergency room but I do not remember very much of it ;o) I do remember them telling me that my my heart rate was ridiculous but my Blood Pressure was almost non-existant. After a couple bags of fluids with Magnesium I was 'right as rain' again. I know that everyone stresses drink, drink, drink and I too can't stress this enough....it seems to help!!! The meds have helped me too. Hope you feel better and I'm sorry for the scary experience Hopefully you might be able to recognize the 'triggers' but if you are like me, sometimes there is no avoiding hitting the ground Unfortunately

Way to go, all of you!! I am recently diagnosed and I too am convinced that there is an underlying cause, condition, something that just doesn't add up!! Appreciate your Posts and honesty!!! Hope we ALL feel better

I sometimes have the fullness in my throat and difficulty swallowing. I was told this has to with my nerves not communicating with my brain, but I seem to notice it is worse when my heartrate is really fast or BP is up. Used to have ringing in my ears when I took Metatoprol but you should still get it checked out. Do you have a blood pressure cuff(sp) and pulsometor at home?

I was just diagnosed in January of this year, yet I still continue to watch every episode I can of Mystery Diagnosis etc. Hoping I might be able to find some sort of clue. But I guess it is just because I can't understand why my quality of life has diminished and there is no 'fix it' pill or solution. Don't get me wrong, I completely understand that sometimes a person is diagnosed with a disease and there isn't an end in sight, but at least doctors can usually take the patient from A to Z on the reasoning or the problem/disease at hand. With me, they think it has been an underlying problem my whole life, but then why did my symptoms get progressively worse in the last 3&1/2 years?? Logically there must have been a trigger or an underlying cause.