mrsdavidson8605

I just feel like if I can get my heart to not race AS MUCH, maybe I could funcion better. But I've tried so many beta blockers and all they do is drop my bp so low I can't get out of bed. Any other suggestions??? I haven't been on ANY medication in months, just bc nothing seems to help....

Thanks for letting me know kansasgirl8605, I am sorry too that you have to suffer with this. It is so horrible, I dread the spring and summer because it's hard to escape the heat. I am the same way with the blanket I can't really fall asleep unless I have it over me I flip them off then the fan makes me cold on some parts of my body and then I flip them back on to get warm but then I get hot in different parts it's a weird feeling definitely enough to drive ya crazy!

I know exactly what you mean. The last week has been you know what for me to try to get to sleep and stay asleep. I woke up this morning and my whole body was so sore my husband couldn't even give me a hug goodbye when he left for work... ugh relief would be nice..

I would be very careful with Norpace. I was prescribed that by a cardiologist but it wasn't working so I stopped taking it (my own choice). Then, when I went to the mayo and my new PCP, they were both SHOCKED that I had been taking Norpace, saying it was really only for people with cardiac failure. That scared me a little!!! Just make sure the benefits out weight the risks. If it's not working or you don't feel comfortable, don't take it!

Exercise has definitely helped me. I do pilates and walk every day (I probably should push myself more but at least I get this in!). Exercise for you at this point may be 2 minutes of floor exercises/day. I have read that recumbent bicycle exercise is great for POTS patients--if you have access to one. Anything you can do to strengthen your legs and torso especially can help by reducing blood pooling. But you may have to start very small and with exercises that allow you to be lying and sitting initially.

Thanks for the advice. As of right now, there's no way I could even do the recumbent bicycle. I'm thinking swimming would be my best option, but even that may only be 10 minutes at a time.... gotta start slow I guess

Thank you I appreciate the advice! I've got to just try it and see what happens. It's just scary for me. I'm definately NOT going alone. I think i'll have my husband or my mom go to the gym with me until I feel safe doing it alone....

I get flushed sometimes in the middle of the night, and it wakes me up and i'm unable to sleep the rest of the night. I try to sleep with the fan on (I have to have a blanket on or I can't sleep). very rarely, it will happen during the day... sorry this is going on for you. I feel your pain!

Thanks. I think i'm going to try swimming first. I think, for me, that would be easiest on my body. (At least I think that is true, I could be wrong). It's so strange that so many of us were athlelets/in good shape before we got POTS. I played 4 years of college volleyball and ran 2 miles a day. Now I can't even walk up and down my basement stairs. Thanks for sharing with me....

Yes, Mine was 3 days. I have had seizures from lack of 02, so naturally Epilepsy was looked for.

I have pics...it was quite a fashion statement!

Wow, pcis huh? No way! I wouldn't be caught dead with a pic of myself looking like this!! lol I'm so tired bc I was only allowed to sleep 5 hours last night. 2 More hours to go before I get rid of this stupid thing!

Okay, I have heard over and over that exercise can help POTS. But I just don't get how I am supposed to exercise when I feel SO BAD. Anyone else in my shoes? It seems like there is such a wide degree of symptoms, and severity of symptoms, that sometimes I feel so alone. I have been thinking about getting a YMCA membership to swim (even if I just went once a week) but then I think about how everytime I get out of my chair, my heart races so fast I can't stand to even be up for more than a couple of minutes. That's how bad it is. It's even hard for me to type right now (just so weak and feeling "wierd").. ANYWAY I know this is redundant but just wondering how many of you out there try to exercise and see any benefit for it?... I've tried so much medication wise that this is about a last resort before going to Toledo.... thanks

I had one 2005, but it was inpatient. The worst part was the neurologist (sorry, but true) but I spent 3-4 days with the guiness book of dandruff stuff coming off my head, no matter how much I washed it. Be prepared sweetie...morgan

Really? wow I was wondering about this stuff coming out of my hair. that's going to stink! oh well... it's not like I go anywhere! thanks for the warning

Well I started Florinef a week ago Monday and started the 2000mg/meal sodium plan my doctor suggested (I have a great document that lists high sodium foods with their sodium content if anyone is interested--just let me know). After "reading up" on the medication on this site, I called and asked my doctor if I could start at .05mg instead of .1mg he had initially prescribed. Well the first couple of days I felt really weird but by Thursday, it was like the sun came out after a year and a half of overcast and stormy skies! My eyebrows became "unknit," and I actually had some expression and life in my face (this was the first thing my wife noticed) instead of the usual "dazed, confussed and pained" look I normally walked around with. Amazingly, other than a massive pre-syncopal spell upon standing up at the end of a church service on Sunday (www.lifechurch.tv for anyone interested), I have had one week of clear headed, non-fatiqued, snap in my step living. But I am always in a "waiting" mode for the roof to cave in again!!! The doctor wanted me to increase to .1mg after a week at .05 and I tried, but after two days of 150/100 blood pressure, I dropped back to .05mg for now. I see him next week, and I am going to see if he'll just let me stay at this level as long as I'm feeling good... knock on wood!!!

I'm so glad Florinef works for you. It doesn't work for a lot of us.. me included. I was just too "revved up" on it and I gained like 20 lbs. It's such a hit and miss game with POTS. Glad to hear you have some relief!!!!!

In 1995, after a "weird" situation while driving in a car (looking back it was very similar to some of the "woozy" episodes I have now), I had a 24 hour eeg. I had much more hair then, but I did look a bit weird. The funny thing is, I had a 24 hour halter monitor on at the same time... so I was wired from head to waist with all sorts of electrodes!!

The hassle I had was getting the "goop" off of my head and out of my hair after the electrodes were removed.

The eeg came back "negative"... but since the neurologist couldn't explain the event in any other way, he labeled me with "epilepsy" and put me on a couple mind numbing, personality stealing drugs and told me not to drive for 6 months. Well, after 3 years I had had enough of those medication and was tired of walking around like a zombie, so I went to another neuro doc and was placed in the hospital for a 5-day eeg. I went in the hospital on Monday, was taken cold turkey off my meds, and the test showed no seizures. The only thing the doc commented on every morning was my sleep pattern... which he said I didn't have any detectable rem sleep the whole time I was there. Granted, I wasn't allowed to sleep from Tuesday morning at 6am until midnight Wednesday. He just thought it was "odd" but said I didn't have epilepsy. I left the hospital and didn't sleep for about 2 months and another doctor placed me on trazodone for sleep and I have been on it ever since.

Hang in there... 24 hours will be up before you know it!!

All i can say is WOW!!!! Geeze, sometimes I can't believe what they put us through! Although, I also feel like we have to BEG and SCREAM just to get them to run any test.. oh well. yeah i'm not looking forward to getting these things taken off. Hope they don't pull out any hair with it!! lol Hang in there... hope you're feeling better.

Yep, had one. Other then it being a pain in the butt, there was really no problem with it. (I went shopping with it on- I have long hair so it covered the electrodes- and they thought I was a secret shopper, videotaping things.) I did have a little trouble sleeping with it because I toss and turn in my sleep and got caught up in the wires. All in all, I think, this should be an easy test for you. Good luck.

Sara

Thanks.. yeah it is a MAJOR pain in the butt... my daughter keeps wanting to pull the electodes off! Just trying to get stuff ruled out so this will be the next thing to check off our list... I can't believe you went shopping! you're brave! I can't handle the humiliation! haha

I had a regular EEG done a few months ago by a neurologist in Wichita. It came back abnormal and he told me, at the time, not to drive until I could have a 24 hour one done. Well things came up, and I had to have that surgery, which happened to be at the same time the test was scheduled (It always takes MONTHS for any speciallist to get anything done, or so it seems). Well I had to cancel my appointment bc I stayed in the hospital longer than expected, and the neurologist FIRED me from his practice, saying I cancelled with too short of notice... Wonderful! So I had to start over with another Neurologist, who, by the way, is definately NOT as agressive in doing tests as the other one was.

Anyway, I got hooked up to the 24 hour EEG today. I go back tomorrow to have it disconnected. Anyone else with POTS been through this? We're trying to rule out seizures but they also said it can pick up sleep disturbances, which I do have trouble with off an on......

I know there are several of you out there who are in the process/already have disability benefits.. I have been debating wether or not I have the energy to even start the process, but I figure it's worth a shot and would help us out a little. My husband is a police officer, and makes an okay living, but we definately live paycheck to paycheck after I had to quit working a year ago. I was wondering if anyone had any advice on how to get started. Just the idea of fighting to validate my diagnosis is exhausting, but I think I should at least try!! thanks.

Thanks for all the encouragement... I know in my head how I SHOULD react to the situation, but it's not always easy to do that! I am just praying for some relief to be in sight soon... thanks again. We are going to get my medical records together to send to Grub's office... we'll probbaly end up going sometime in May.

Well I had the surgery almost two weeks ago and have felt no relief of my symptoms. I ended up being in the hospital for 5 days due to the extreme amount of pain that the surgery caused while my kidney was dying off. they were able to save 3/4 of the kidney. I'm just discouraged bc they were pretty sure the aneurysm was what was causing the symptoms. I'm still light headed and my heart races when I get up. I just don't know how much longer I can go on like this. It's put a hault on our lives. April 7th will be the one year ann. of me quitting my job. I can't believe it's been a year already. I just don't know where to turn from here. We're looking at possibly going to see Dr. Grubb's PA but i'm just not sure if that's the right thing to do. It would be such a long trip.. anyway..just thought I would let everyone know that I am home and still recovering...

ks girl

Thanks to all for the great advice! LOL yes I know about the incorrect spelling of it. I've had SEVERAL ER docs try to spell it POTTS. I will make sure and let them know the details. Well, I've got my sonic ice cream (gotta have somethin comforting before tomorrow).. i'm gonna eat it and try and get a decent night's sleep. Thanks again.

ks girl

I've heard that people with POTS have a problem being put under.. anyone else been through this? any advice on anything I should tell the docs? (keep in mind that most of the docs at my hospital can't even SPELL POTS correctly, let alone have a clue as to what it is, what symptoms are caused by it).. thanks..

Hey Kansasgirl,

I had a large fibroid tumor embolized. Like you, I was warned of extreme pain because the tumors are supposedly muscular and when they die (from the cut-off blood supply) it supposedly really hurts...like a heart attack. I didn't have an epidural, but my doctor managed my pain really well via meds from two different IV's. Like you, I was petrified. In retrospect, it was nothing. I wouldn't be nervous at all if I had to do it again.

I know a kidney tumor embolization will be different than a uterine fibroid embolization, but I suspect it'll be fine, especially with an epidural. Have you had one before? I did when I gave birth to my son. It wasn't too bad. Holding still during contractions was the worst part & you won't have to deal with that :-)

I'll keep you in my thoughts and prayers on Tuesday. Keep us posted on your progress.

Hugs-

Julie

Well It's not a tumor, but an aneurysm. The size and location is actually pretty uncommon (it's inside the kidney) but I hear the alcohol embolization is common. Thanks for the advice. The surgery is actually going to be tomorrow. they've changed it so many times.. ugh...

We went to see the urologist Tuesday, and he advised that I do the alcohol embilization (sp?).. instead of surgically removing the kidney. So I will go in Tuesday at 9am. I am supposed to be in for 3 days or so, with an epidural block, due to the pain. I am so nervous about this! I am such a whimp when it comes to pain and i'm still recovering from the last surgery they did a week ago... I'm just hoping they can fix the problem and I can maybe get back to a normal life...

Hi,

first of all, I am so sorry that you are having to deal with this issue with your doc. Be ASSURED that you are not the only one. I know that doesn't help you physically feel better, but I can honestly say I know EXACTLY what you are going through. I've had numerous docs blow me off. I've had a mayo doc tell me there's nothing more he can do. I know how frustrating it is... so much you just give up. I have... but then, somehow I am able to get up and keep moving...hopefully you can find strength to do the same. You're the only one who knows exactly how you feel, unfortunately, for those of us with these problems, it's hard to get the rest of the world to believe/understand us. Wouldn't it be nice if we didn't have to explain ourselves and validate our stories, but just get medical help like the rest of the population? ahh just a dream I guess...

anyway, I'm happy to hear someone writing a letter to their doc. I have thought about doing this, but i'm waiting until this whole surgery thing to see if this is the end of my troubles.. Have you thought about having an advocate? This is something I did a few months back.. not that I am not able to handle my own business, but, I have found that my husband gets a lot further with docs than I do. I know that sounds CRAZY but it's so very true! He has basically taken over for me, by calling, scheduling, and keeping records for me (hard to do when you're in constant brain fog!) He has been such a help. At times, he's had to get TOUGH with the docs, but it works! ) It's like a big burdon taken off my shoulder.. Plus, he can soften bad news from docs and relay it to me (I feel like a kid sometimes, but it's worth it to me)... just a thought...

Hang in there! there's always another turn, another door to open.. never give up hope!!

I know what you mean! I signed up for it a long time ago but haven't heard anything.. OBVIOUSLY no one in KS has POTS or hasn't found the website yet.. either way it's lonesome!! But it's nice to have the forum to chat with others. Have you had a TTT done yet? If not, I know of a good doc in Wichita if you can't find one in NE. Depending on where you are, it may be worth the drive to have the TTT done...

Not trying to be down aout everything, but I have noticed a few more symptoms. My stomache is HURTING! Like menstural cramps only it's not that time of the month and it seems to be a lot in the morning (when I first get out of bed). Anyone have any suggestions? My feet have also been swelling up if i'm walking around too much during the day... I feel like i'm falling apart!!!!

Oh yeah, it happens to me all the time!