friday
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Posts posted by friday
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They keep telling me not to worry about it but on the days that my BP and HR fluctuate are the days when I feel the worst.
P.S. this is interesting. I will have to chart myself and see if that is true in my case.
Susan
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I'm not on any meds and sometimes my HR and BP are all over the place. My resting HR can be anywhere from 50 to 85 and my BP can be 80/50 or 140/90 within a small time frame. They keep telling me not to worry about it but on the days that my BP and HR fluctuate are the days when I feel the worst.
BTW, my BP is always much lower when I lie down.
That's the thing. They always think if it's in or around the normal level it's fine. Like our only concern is whether it's life threatening. Sometimes I think maybe the fluctuations themselves aren't normal and I would like to know if that's effecting the way I feel. Like maybe if they were more level I might not get those days when I suddenly get exhausted out of the blue or about a hundered other things like that. I think what they fail to understand is this effects the quality of life, and I feel the more I understand what's going on, the more I can help myself. Unfortunately most doctors don't seem to like the educated patient.
Susan
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Florinef can be very effective in raising your blood pressure. It helps your body retain salt and water.
Yeah, I remember hearing about Florinef. i'll have to ask the doc about that.
Thanks
Susan
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Friday
That's great that you have resolved the most troubling symptoms with your doctor's help. As far as your current symptoms--do you think it could still be effect of the mestinon (don't know how long it takes to clear the system)? Unfortunately, too, this is all too common with POTS--wide fluctuations in hr and bp. There are days that I cut back on my beta blocker a bit b/c I notice my hr is not too high, or I can just tell my bp is low. Other days I use the full amount prescribed. I talked to my dr about this and he said that is fine to do. He also told me (which I think I mentioned before) that he has seen this phenomenon you are describing--hr actually going down when standing, in POTS patients, after having the condition for awhile. He didn't explain how it would be treated or if it would need to be, necessarily. Anyway, these are questions for your doctor.
As far as things besides salt to raise bp--there are medications available. Some people find that support hose helps. Some people use licorice root to raise bp. It would be a good idea to talk to your doctor before self-medicating, tho!
Take care,
Katherine
Thanks for the help. I think the Mestinon should be out of my system because my doctor told me it would take 12 hours. I felt better after that time, although it lingered into the next day a bit. I am still actually on the mestinon because when I was taking it at a lower dose it had helped me to feel better. It's just that my dose was raised a bit and I was getting too much, and an overdose can cause those symptoms. I will have to ask if that might be causing the fluctuations. Like I said the fluctuations don't seem to be making things better or worse, it's just that I'm not sure how to deal with them, as far as medication and just knowing what to expect.
Susan
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I recently was here asking about some horrible symptoms I was having. I found out they were related to an overdose of Mestinon. One of the things that was weird is that my heart rate was so low, 57 when standing, and I didn't even need to take my Beta Blocker. Also instead of it rising when I stood , it would drop, and the blood pressure that would normally drop, went up. anyway, I stopped the Mestinon and the heart rate went back up.
Since then I have been monitoring my BP and heart rate. I have noticed that although the heart rate wasn't low anymore it was still doing the opposite of what it used to do. The heart rate would go down upon standing and the bp goes up. Also the BP has been low when lying down like 85/54 and like that. Sometimes even when standing. I dont really understand this and don't know if it means anyting. I haven't even needed the Beta Blocker.
However, today I woke and my heart rate was 87 lying down. I got up and took it and it went up to 137. The BP went down just a little.
Now it's gone back to about 75 the bP is normal and it really doesn't change much upon standing.I'm just confused by all of this changing. Does this make sence to anyone?I haven't really noticed a worsening or lessoning of symptoms, but I just wonder what's going on. I also don't know whether or not to take the BB. I hadn't been taking it for a few days and then like I said, the heart rate was high this morning. I'm not sure if you have to take it steady or if you can use it on a " as needed" basis. any help appreciated.
Also I'm taking 5 salt tablets a day + on my food. My sodium level has gone up within normal limits but the BP is still low. I'm wondering if there's anything else that will raise the BP?
Susan
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Of the 6 hours that I was connected I slept 2 hours and did not have any REM sleep.
I have to go back for 2 other sleep studies because this one was not conclusive for sleep apnea since I had no REM sleep.
So if you do not have REM sleep they can not tell if you have sleep Apnea? I am wondering because i did a sleep study once and they told me I do not have sleep Apnea. However I only slept for three hours and I did not have any REM sleep what so ever.
Sue
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I was just reading some of the general information about POTS that the site has, and I read this line;
POTS symptoms are sometimes correctable if an underlying cause is discovered.
Has anyone found out any underlying cause for thier POTS, or has anyone's doctor even looked for an underlying cause? This is saying that there is a chance that it can be corrected, and I'm just wondering what cause would it be that can be corrected.
Sue
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Thanks all for the comments.My Bp is in the norm, although it usually runs on the low side. It also usually goes down when I stand at least a little. It seems to be doing the opposite now. Goes higher when I stand. I am measuring the heart rate witht he BP monitor. it seems to go lower when standing like i said, but its running low for me anyway. I can't really stand over a few minutes because this sick feeling comes over me. Also my Blood sugar is having trouble staying up. I'm hypoglycemic so that usually happens around my period but it's been over since last friday so normally it would be better by now. It occured to me that maybe it's the Mestinon I'm on causing this. I looked up side effects and it does mention weakness dizzyness, and fatigue as a side effect of being overmedicated. I'll have to call the doctor and find out what can be causing this. I just didn't realize the past week that I was this sick, that my heart rate and BP were doing this, until I checked this afternoon. Thanks again.
Sue
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I have been feeling really weak and tired lately. I have trouble even typing this. I have been on a beta blocker for some time. I used to monitor my blood pressure with a bp monitor that also tells the heart rate. It used to go up all the time when I stood up. I haven't monitored it much since being on the beta blocker . Anyway, I just recently took it and the heart rate actualy went down instead of up. It was 68 lying down and went to 60 standing up. Which is really wierd for me when I stand up. I took it again later and the same thing happened. I was just wondering if maybe the beta blocker is causing this and that's why I feel wiped out. I'm thinking maybe it is actually too low at times. Does anyone know if a beta blocker might do this to you?
Sue
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In my experience, the relief of symptoms comes much faster. For some people, salt tablets maybe don't help at all at times--whereas the IV does give temporary relief?
I think the risks of taking salt tablets is far lower than the risks (which are not high in most cases) associated with IV therapy.
Katherine
How often do you have IV therapy? Does the insurance give you problmes in paying for it? I'm on Medicaid so I thought they might. They don't like to pay for anything a little out of the ordinary. I'm wondering if it would help me after my period because the symptoms get really bad then and then it takes days before I can get out of bed.
Sue
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I had heard that some people benifit from getting saline IV's when they are really bad. I was wondering what the difference is between this and taking salt tablets.
sue
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I was wondering if anyone here has tried Mestinon to help with POTS syptoms? My doctor has had me on it for a few months but it doesn't seemt o be doing anything. I thought maybe I was feeling a little more energy at first but now I just feel lousy again, and very weak. I haven't been able to do much of anything lately.
sue
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I wish we had a support group here in Central NJ for POTS-Most people never heard of it. . Beth
I'm also in Central Jersey. If anyone wants to start one, I'm in.Unfortunately i can't start one because I'm just not strong enough to run one.
I belong to a CFS group at yahoo, where I've tired to spread the word about POTS. I know a lot of people with CFS also have POTS. The problem I think is nobody makes them aware of it because as you say, nobody's has heard of it. Maybe POTS isn't as rare as they think. If doctors don't know much about it, if anything, the CFSers they are treating might have it and not know it. Just a thought.
Sue
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Thanks for all of the replies.
Actually the confusion of how I got the test done was probably because I have to deal with so many doctors that aren't working together.
The test was for one hour tilted upright. They took my BP and heart rate during, and they did give me and injection and then tilt me up again for a half hour. It really got my heart rate going because I could feel it pounding away in my chest. I asked them about it but they said it was okay and it would go away afterwards which it did.
The doctor that I'm seeing for CFS did not order the test. He was satisfied with the results of the blood pressure and heart rate that I got at home and he also did in the office. He didn't officially diagnose me with POTS, but he's been treating me for POTS symptoms because of this. He does know a lot more about POTS than other doctors, and says if I don't feel better from what I'm trying now he knows a good POTS specialist he can send me to. The thing is I have to pay for this out of my pocket. I can't really afford this because I'm living on practically nothing right now, so I've been trying to work with the doctors that my plan covers, but none of the doctors my insurance will pay for knows anything about POTS.
So, at the same time I am working with my GP who doesn't really know anything about POTS and CFS but is trying to treat me based on my problems.I have a fast heart rate, so he sent me to a cardiologist. Actually first I saw a nuerologist who then sent me to a cardiologist. Then the cardiologist sent me for the TTT. Based on his knowlege. I talked to him about POTS and he seemed like he knew about it, but I guess he was just looking for this other disease and didn't really care what I was looking for. The same thing happened with the nuerologist, all he was looking for was MS.
Anyway, I've tried to get my regular GP to get in touch with my CFS specialist but so far they haven't. The thing is the CFS specialist is well known, and some doctors there know his name and say he's the one to go to, yet they haven't taken the time to get in touch with him. I've even given them his cell phone number. I'm getting fed up with it.
So I am being treated for POTS already from the CFS doc, it's just that I don't have the money to see him all of the time and was hoping the TTT might be of some value is, because when I tell the other doctors that I'm working with about POTS they want some rock solid evidence that they approve of and I thought this might help.
Sorry if it's confusing but that's how it is working with these people. Nobody talks to each other and nobody really thinks anything is that serious because it's not life threatening.
I guess the best thing to do is to go back to the CFS specialist and tell him about what happened with the TTT. He is the best one to go to with this. I'll also have to ask him if I have a diagnosis of POTS since I'm being treated for it. Then at least I could be certain of what I have. I just wish my insurance would pay for it. I think I have to go back to my regular GP and tell him he's got to get in touch with the CFS specialist and work with him or I have to get another GP.
Anyway, sorry if this post was rambling but that's what happens when you're trying to deal wtih all of this and you have brain fog.
Thanks for all the help.
Sue
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HI. I haven't been here for a while becasue i've been feeling too lousy to work on the computer too much lately.
Anyway, I finally got the TTT I was waiting for. I don't know about the whole way it was taken though and have some questions.
I've taken a poor man's tilt at my CFS doctors and at home with a blood pressure monitor several times. My BPM always goes up 20 to 30 and my blood pressure usually drops. A lot of times it drops under normal.
Anyway, During this TTT I didn't faint. I didn't have the symptoms I usually have at home or in the office. Although I didn't feel that good it wasn't too upsetting.
The thing is my CFS doc wasn't available for me to aks about the test before i went and I had to ask the cariologist who took the test if i should take my Beta blocker. They said yes. Which confused me because I thought the idea was to see what my normal reaction would be. And they also gave me Saline solution during the whole hour. I had read that some patients get given saline afterwards to help the symptoms go away after the test. So wouldn't that change the effect the test had on me during?
Anyway, I asked the tech if she could tell me something and she did say that the heart rate didn't go above 110. However that means it did rise at least 20bpm and that's with the Beta Blocker. Also she didn't tell me the BP she just said it didnt change much. The thing is they were looking for another disease. They really were only looking to see if i fainted.
So now i don't know what to think. Was this a waist of time? Will I be able to get the results and figure out from that if it's POTS, or will the additions of these other things interfere.
Anyhelp appreciated.
Sorry about the typing. I get sick when i look at the screen too long and can't go back to proofread now.
Sue
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Whoa! I haven't heard anything of this before. I had always wondered about a possible connection because of the fact that both diseases (or syndrome since we're not alowed to call CFS a disease) have problems with compromised immune systems. I would think if there was a link between CFS and AIDES doctors would want to know. Just for the fact that knowing more about AIDES would bring you closer to a cure. But then again since so many doctors aren't excepting of CFS maybe they would want to ignore it. they're good at doing that. (sorry is my bitterness showing?) Anyways, thanks , I will have to print this whole article out and read it later.I'd certaily like to look into this further.
friday
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Do you have any allergies? I don't know about the muscle pain but the rest sounds just like me the past few weeks. Especially the part about the throat not really being sore so much as the glands being swollen or even painful. I have an allergy to mold. The doc says it's probably worse lately because of the dampness causing mold in the fall leaves . I don't know where you live but I thought maybe this was a possibility.
Friday
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I agree that you need a new doctor. Why should you have to "put up with" these symptoms? What kind of attitude is that. I'm sure he wouldn't just put up with it!Like someone said people will think what they think.
I know it's not easy just to change your job, but maybe you might be able to find something where the work is similar, but the pace is not as fast or where you don't have to stand as much.
Friday
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I just asked in another topic how you know you have low blood volume (didn't get the answer yet, so maybe you can help ,me). Is it something that can be tested?
Corina
My doctor wanted to test me for it. I forgot what the test is called though. Anyway, it hasn't been easy finding a place that will do it. He is investigating now to see if he can get a place for me to get it tested.
Friday
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Get mad and let that anger propel you toward research and a willingness to try just about anything so you can prove "them" wrong. I'll say it again: Yes, you CAN get better!
Thanks for your story. In needed to hear that.
Friday
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Hmm I posted here before but it doesn't seem to have gone through. Ok i'll try again. Yes, I was testesd for lyme disease. And I'm pretty sure EBV too. No abnormals results. I've had a high ANA. I was also tested for lupus and don't have that. My sed rate was high. I think. well, I know it was abnormal. It's been a while since I had that done so i'm not sure if it was low or high but it wasn't normal.
I had postive CMV and HSV tests. An alternative doc had that taken. When i saw
my regular doc he acted like that was nothing. I'm set to see an alternative doc soon so i'll ask him about it.
Someone had suggested the Mayo clinic to me, and it sounded great but I have a Medicaid HMO so I didn't think they would pay for that. They don't want to pay for anything. Three regular docs have dropped me this year because they don't get enough from them.
Thanks for the encourangement. I could use that right now.
friday
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Sorry I forgot to mention that that article snippet I just used was from that link that Michelle has posted.
http://en.wikipedia.org/wiki/Norepinephrine
Friday
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Norepinephrine; It is one of the 'stress hormones' and affects parts of the human brain where attention and impulsivity are controlled. This compound affects the fight-or-flight response, activating the sympathetic nervous system to directly increase heart rate, release energy from fat and increase muscle readiness.
SO if your Norepinephrine level is way high, that would increase your heart rate?
Would that be why POTS patients have a high heart rate? And if Norepinephrine was high, is there anything that can be done about it that might help lower the heart rate?
Sorry if this is naive but I have to ask questions to learn. I just keep looking for clues. If I get an abnormal on anything, I want to find out if it contributes to what I'm feeling even in a small way. (
Friday.
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Norepinephrine is not the same as adrenaline (epinephrine). Here is a link regarding norepinephrine:
http://en.wikipedia.org/wiki/Norepinephrine
Michelle
Oh that's right. I got it mixed up with epniphrine. Thanks for the link.
Friday.
changes in heart rate
in Dysautonomia Discussion
Posted
This is what I was talking about in the last post. It's seems like us patients want a better understanding of why this is happening but docotrs are just concerned with normal limits. Although like I said. This doesn't seem normal at all. so why doesn't that matter to them? I could see if you're feeling perfectly fine, but if you're having symptoms that are affecting your life it should matter what's going on. That's how I found out I had POTS to begin with. I kept having low normal blood pressure readings. Then I looked up low blood pressure symptoms, and it was exactly what i felt. So I got a monitor and started recording what my readings were standing sitting and lying, and sure enough they were going below low at different times. I also found my heart rate was raising and that's how I found out about POTS. This just really pis*$#! me off because I have told them for months that I think my symptoms may have to do with the blood pressure and they ignored me.
Susan