Jacquie802

Thank you for all your replies. I tried to get compression stockings but my insurance would not cover them and they are very expensive...I was on Midodrine as well as florinef at one point, but I got severe headaches which were intolerable (even with pain relievers). Not really sure where to go from here...

I'll have a week or two that are good, then I'll feel horrible for a few weeks. Then it repeats, back to a good week or two. That's the hardest part for me. To feel normal, almost like I could go out there and get a full time job, then the next week I can barely function. I do appreciate those good times, but I know that they aren't going to last. My cardio did say that I'll most likely have some good times then relapse because from what he has seen POTS seems to come in waves for some people...

Hello, I just posted a question, but have a second question. Today I was standing in line for an ice cream (for my mom, or else I wouldn't have waited the 20 minutes for it!!) and I felt really lightheaded and then notice my heart rate was increasing. The thing is, is that I've had these symptoms before and took my bp and it was normal...Does anyone else have that too? Why am I feeling so lightheaded if my bp is "normal?" The palpitations don't start up right away, if that makes any difference...

Hello For a while I was doing very well. However, a few weeks ago until present time, I have been waking up with sweats, palpitations and severe nausea. I feel like I am going to vomit but nothing happens. I can't tell if the nausea is causing the sweats and palpitations or vice versa. I went to my pc for the nausea and was given ranitidine for possible ulcer/acid reflux, but I still get these "attacks" at night...anyone else have this problem? Also, what do you think it could be?

I had aweful palpitations and sweats the second day after taking Prozac's generic.. I'm not sure if that caused it but I stopped taking the Prozac and the symptoms have subsided a little bit...

Hi everyone, If I hold my urine in or just feel the need to urinate I notice that I get palpitations and my heart rate goes up...does anyone else experience this?? What could be causing this??

Was it maybe a side effect of either of the meds?? I have been on both of those meds, but the highest I have been on Midodrine is 10mg, 3 times per day (never had 5mg between the 10mg doses). As for Florinef, it causes headaches for me....I've had IBS problems, but I think it's common with having POTS.

I too take quick showers and always make sure someone (most often my mom) is in the house while I am showering. I get lightheaded and nauseas when I shower.

I previously used a wrist cuff, but my doctor said to invest in an arm cuff because he believes that they are more accurate. I'm not sure which of the two is more accurate or whether they are about the same; with that being said I never got the arm cuff because it's too expensive!

I suffer from memory problems, however an EEG showed sharp spikes in the left temporal lobe in my brain-possible seizure activity. Sometimes, I do have a hard time coming up with the words I want to say. Not sure if it's due to the spikes or POTS?

Hi there, Thank you both for your replies. Currently, I am only on Midodrine, which I cannot take before I go to bed. I was previously on Toprol XL, but had to discontinue that due to significant drops on bp..I appreciate the support, it's hard. For a while I was doing well and was even thinking about looking for part-time employment-now, not so much.

Dani, Waking up is the worst for me lately. I actually feel like I'm going to faint when I wake up in the morning-this is before I even try to sit up . Is there anything you have found that helps??

Tonight has been one of the worst nights. I fell asleep at 730pm and woke up at 915pm. I woke up hot, very pale colored, and severely dizzy. I was unable to move for approx.5 minutes. I swear my blood pressure must be dropping while I'm sleeping. What else can be causing this. I have not been doing good these past few weeks. Guess I'm looking for advice as what to do next.

Hi Julie, Thank you for the reply . Unfortunately, I cannot afford a bp cuff-my neuro wanted me to get a bp cuff that goes on your upper arm; they are soo expensive! Looks like I'll be making a neuro. appointment tomorrow .

**Also, I seem to have been headaches often, especially after waking up feeling cruddy...

Hi there, For the past week or so it seems as though my symptoms have "reared their ugly head." The mornings have always been bad for me, but this past week after I nap or wake up from sleeping overnight I can barely get out of bed. I feel like I am going to pass out, and this is before I even try to sit up. I've talked to my doctors about this, and they have told me that my bp would not be dropping while I'm laying down, however, I can't think of anything to explain this. I have tried to Florinef, salt loading, and presently the Midodrine (2.5mg 3-4 times per day)-the salt loading had no noticeable effects (however, I still try to eat salty foods), the Florinef gave me horrible migraines, and it seems as though the Midodrine is starting to do the same thing. I am at wits end, and unsure where to go from here . Also, once I do try to sit up my heart rate jumps, I start sweating, and the lightheadedness gets a lot worse. Just feeling depressed and helpless lately...Thank you in advance for reading and any advice. Jacquie

Hello there everyone, I've been off the forum for quite some time! I had a lot of personal things going on (living situation, health, etc.), but I am glad to be back. Looks like there are many newbies here! Jacquie

Hi everyone, Has anyone else been in the same boat as me regarding nausea? I have tried multiple meds and for a while the zofran helped (i take 8mg of zofran), however, now after 2 or 3 hours the zofran wears off. At this point I'm getting depressed as the nausea is the worst it has ever been. I'm out of ideas. i go to my GI doc, well I'm supposed to go there today as long as I can make the drive...I guess I'm just looking for some support..and ideas... Jacquie

Hi guys, I've thought about you guys lately and wanted to check in and see how everyone is doing. I haven't been updating as much due to not feeling good. I still have the severe nausea esp. at night and the lightheadedness. I go to my autonomic specialist Thursday, but I'm not sure what they are going to come up with for me. I'm going to catch up on some posts. Welcome to all the newbies! Jacquie

Hi, Thank you both for your replies. I am at BI now since Dr. Novak left Boston Medical. I see Dr. Freeman and he is great so far. I go back next week to have some more blood work done to check my ganglion antibodies, not sure what its called exactly. I do have severe nausea alot so I hope this med wont bother that. Do you know what symptoms Mestinon is supposed to relieve?? Jacquie

Hi, My neuro. has started me on Mestinon 15 mg twice a day, one in the am, then one in the pm. I have to cut the 60mg tablet into 4's. Just wondering if thats a normal starting dose for POTS. Also, any side effects at that dose? Thanks, Jacquie

Hi guys, Thank you all for your replies. I'm not sure the name of the test I got done to check for the antibodies, but I had the test done at Beth Israel Deaconness in Boston, there are alot of teaching hospitals here so maybe that is why they did the test, for further information. I am curious though, if my POTS is autoimmune does that mean it is going to get worse?? Also, what does the Mestinon do to help?? Thanks for the replies in advance!

Hi guys, I got the results of my latest tilt table test today and it was positive. My neuro is going to start me on Mestinon because they found elevated numbers in some blood test, it was something to do with ganglions??? Does anyone know what that's about. My doc said something about it being autoimmune causing my POTS. Im really confused, if anyone has any experience with Mestinon or autoimmune POTS please let me know. I am scared and confused right now. Jacquie

Hi guys, With the hot weather here I haven't been feeling too great at all, so I am sorry for my lack of posts. Just curious for the past few nights I have been waking up around 4am or a bit earlier and I am soooo dizzy, I'm unable to get up to even use the bathroom. Does anyone else have this??? Do you think my BP is dropping too low during the night? Is that even possible?? Thanks in advance for any replies. I hope everyone is doing well, you guys are all in my thoughts. Jacquie

Hi guys, Just wanted to let you know that my insurance approved my RX for Ondansetron to treat my nausea!! I'm really hoping this helps. Jacquie