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  • It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

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    Old 05-10-2005, 11:11 AM   #61
    heartlandguy
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Your brother is able to boat already? I'm sort of shocked he could do that so soon after the severe problems he had. That really is good news and reason to celebrate. I will keep your family and GBF in my prayers.

    BTW... I'm sorry to hear you had a bad night. You must feel sleepy and flushed. I hope you don't have anything serious developing, my friend.

     
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    Old 05-10-2005, 11:25 AM   #62
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Quote:
    Originally Posted by heartlandguy
    Your brother is able to boat already? I'm sort of shocked he could do that so soon after the severe problems he had. That really is good news and reason to celebrate. I will keep your family and GBF in my prayers.
    Would you expect anything less from Goody's brother???? Even superglue won't hold that 6'6" guy When he told me that he had been out boating I knew that my worries were over for a while....just hope it doesn't cause a setback like my jumping jacks did

    Quote:
    Originally Posted by heartlandguy
    BTW... I'm sorry to hear you had a bad night. You must feel sleepy and flushed. I hope you don't have anything serious developing, my friend.
    My friend, you never miss a heartbeat....I got up with my daughters this am and lazily went back to sleep until 11am....seems MBF did the same.....a metaphysical thing, I guess anyway....I am feeling better....if it were anything to be worried about it would only get worse. I will keep you posted on my first thread.


    Thanks again for being such a wonderful friend......Goody

     
    Old 05-10-2005, 01:18 PM   #63
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Hello all,

    I wandered onto this site by accident while doing some internet research, but thought I should stop and throw my two cents in. Lisa, I also have POTS and have been dealing with it for four years now. Unlike you I was not diagnosed until a full year after I was bed ridden. I was misdiagnosed with Addison's and depression before figuring out for myself what was wrong. I have found a great doctor now and am doing much better. If you wanted to discuss symptoms, medications, or anything else just let me know. I probably won't be back on this board again, but you may email me at [ please carefully review the posting rules - no emails ] if you'd like. I am finally beginning to get my life back again and would like to do anything I can to prevent anyone from going through the four years of hell I've been through.

    Cheers,
    Stacy





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    Old 05-14-2005, 10:14 PM   #64
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Hi my name is Jen, i'm 30 yrs old and was just diagnosed with POTS this past monday.I'm married with a 3 yr old son. I was admitted in to a local hospital for testing after months of being very sick. It had started last november with uncontrolled nausea, vomitting then got worse with lightheadedness and dizziness to the point i was on my hands and knees crawling. I started getting severe headaches but took them as migraines because i have had them for years. It got to the point i could not function on a daily basis anymore and still can't. I eat salt out of the palm of my hand because the craving is so bad for it.

    About 8 weeks ago my BP dropped in the dr's office to 62/40. My normal is 90/60. Was still coherent to my and my dr's surprise. LOL..Went once by ambulance to the local ER but they were clueless because of the dizziness said i had inner ear inflammation (We won't go there). I started getting severe low back pain and abdomen pain which lead me to getting admitted to a regional hospital last week.

    I am fortunate to have a wonderful family dr that believed i wasn't nuts and thought i had addison's disease and wanted further testing. I saw GI had abdominal US done and an Endo..BP hit the floor he wouldnt tell me how low but i'm sure the crash cart was out..because i "surprised" him. I woke to a BP of 64/42 and HR of 99. That was when he believed it was addison's also.

    Called Endo in and they still stim test because my cortisol was through the floor. that came back low normal..which my family dr still thinks its addison's..wants further testing.

    They sent in a group of cardiologist that i asked for specifically because of getting severe chest pain into my ears and back thought i was having a heart attack. They did the table tilt test on monday i was fortunate did not pass out thank goodness, but my HR did go above 130 within mins of being tilted. Had to stand there 30 mins feeling dizzy, nauseated and sweating like a pig.

    My cardiologist is a god sent explained that i have a rare disease called POTS that he maybe diagnosis every 2-3 yrs and has never diagnosised it in a woman of child bearing age. I don't know if that should make me feel priviledged or not..lol since he has been a cardiologist for over 40 yrs.

    He has started me on Midodrine and Florinef, Reglan and Protonix..didn't want betablockers because of my bp. In the process of getting Jobst pressure stockings. The medication has worked somewhat.I have my good moments and my really bad holding the wall or crawling moments praying to get to the bathroom moments.

    I have a full time job at a veterinary hospital that i stand all day..was stupid enough the day after coming home from the hospital to go back (wed) for a meeting and thursday (half day) paid dearly thursday and fri and now today.

    My memory is worth nothing lately..but i guess lack of oxygen to your brain can do this. At least now i'm not crazy and i'm not alone.

    My husband and i are taking it one day at a time right now not sure about working looking for other employment probably or might have to go on disability if it gets no better,i'm at a loss right now. I'm frustrated and starting to get depressed.

    Lisa i hope you hav been getting some good days and Goody i hope your brother is doing better.

    Jen

     
    Old 05-15-2005, 08:34 AM   #65
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Jen....I am so sorry to hear all that you are going through. I truly understand how frustrating it must be in seeing my brother go through the same exact thing. Although they originally diagnosed him with POTS, this second time they have splained to him that he has a defect in his sympathetic nervous system...sort of like a miswiring in which there is a break in the connection of the part that controls his blood pressure and heartrate. He still feels that pressure in his chest and not 100% but with the meds he is back to work on a part time basis and is slowly increasing his hours as he is able to. He is on Catapress and an antiseizure med for the tremors which thank goodness allow him to function. For a while there he was worried that this may not happen. It did take time for the meds to help out so please give the meds a chance to do their thing. I really hope that they come up with a treatment that will restore you to a somewhat normal life that doesn't leave you feeling so debilitated. I know that must be so difficult being young and having a small child. Please know that you are in Goody's prayers that things will improve quickly for you. And know that I am here if you need to talk at anytime or if you have any questions.

    ((((HUGS))))).......Goody

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    Old 05-16-2005, 06:33 AM   #66
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Thanks Goody..Had a really horrible day yesterday diarrhea and vomitting with severe headaches, dizziness and chest pain. My poor husband he has been so wonserful had to help me walk it was so bad. The medications do not seem to help much anymore but still holding on to hope have only been on them a week, may just need to get in my system more. We are trying to do all the research we can, pretty much at a loss for the cause of why it started, even the addison's disease. My dr's think it may have been from a viral infection but no one knows for sure, more questions than answers right now. My parents are coming up to spend the day because i don't feel well enough to be alone and get around. My husband and i thought about contacting Columbia University in NY for more info and possibly further testing and maybe more answers and help. I may lose my job due to i can't due basic functioning right now let alone wrestle 90lbs dogs. Taking it one day at a time and hoping for more relief or better yet a cure would be awesome so i can go back to being myself.

    ((((HUGS)))))))) Keeping my sense of humor to stay sane and my chin held up

    Jen

     
    Old 05-17-2005, 06:15 PM   #67
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Wow Jen!!! Your story sounds EXACTLY what I am going through!!!!! They have me diagnosed with both Addison's, POTS and RSD (in both my right elbow and the back of my head). I honestly couldn't believe reading your post...Almost word for word what I went through.

    At this point, I am on TONS of medication. Here is what I am on:

    * Nadolol - For the rapid heartrate that I get from sitting to standing.
    * Prednisone - For the Addison's Disease
    * Lamictal - For the RSD
    * Methadone - For the pain
    * Midodrine - For the dizziness for when I am up longer than 3-5 minutes (this I just started since Friday and it has been working great!)
    * Mobic - For the extreme chest pain I have been having
    * Aciphex - For the nausea that I have started to have
    * I am also having Lidocaine infusions twice a week - they run from 2-6 hours per day. This has been the ONLY thing that has taken the pain away in my elbow. Once we stop treatments, the pain comes right back.

    I am not sure that I can answer all of your questions, but maybe I can try to answer them by what I have been going through so far!

    It is just nice to know that someone else has gone what I went through. I too thought that I was going crazy too because I saw so many docs that weren't able to tell me ANYTHING! They all thought I had an inner ear problem too.

    Wow...Glad you are here...

    ~Lisa

     
    Old 05-21-2005, 08:50 AM   #68
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    LIsa,

    I too have POTS and many many other conditions. I am only 27. If you would like to email and talk to someone my email is [ please carefully review the posting rules - no emails ] . I know how bad life is w/this condition. My heart rate went up to 190 just standing up. It is awful. Anyway, I hope to hear from you when you feel like writing.

    Take care,
    Suz




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    Old 05-22-2005, 06:33 PM   #69
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Jen & Lisa ~ How are you doing???? I have been thinking about the two of you and hoping that there is some improvements and that the meds are starting to kick in. Jen, I definitely think you should get yourself to a good teaching hospital that can treat your condition. Don't stop until you find a doctor who will find the best treatment & one that you will respond to.

    Heartland & all ~ Thanks for inquiring about my brother. Thank goodness he is functioning enough to work....he is going in half days...still feeling the pressure in his chest and generally tired with some headaches but most of which is under control. I am hoping that Jen & Lisa will get the same type of response. There is nothing like the feeling of not being able to do the things you so want to do and having to rely on others and the side effects of the meds is sometimes just as bad as the condition itself. But thank God, my brother is feeling more himself. I'm praying that it will be the same for everyone here soon.

    ((((HUGS))))) and prayers to all ~ Goody

     
    Old 05-23-2005, 08:56 PM   #70
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    I am actually afraid to even say it...things are actually going VERY well. My dr. put me on a few new meds last week and they are doing wonders!

    I started taking Midodrine for my bad dizziness that I was having after I was up and walking around for 4-5 minutes. I have been taking the meds only in the morning (normally you take it 3 times a day, but not less than 4 hours before bedtime, since it could cause your blood pressure to shoot up by just going to bed!). It is working, but I can start to tell that is wearing off in the early evening. So today we add a dose in the early afternoon. I am hoping that that totally helps. I have had VERY few dizzy spells at all and have had no issue with being up and around - it has been GREAT!!!!!

    Then I was getting AWFUL chest pains, having trouble breathing. I was taking Bextra (which was recalled, but was working great) but then couldn't get anymore, so we switched to Celebrex but that I had an allergic reaction to and it put me in the ER (I couldn't breathe and my throat started to close), so the final option was Mobic. After day 2 - no chest pain, no trouble breathing! The only bad side effect is a burning scalp - which I can put up with since it is only really bad about an hour after taking it and it lasts for a few hours. So today we also upped that to include an evening dose, since I am starting to feel a little bit creeping in in the evening.

    I am also having Lidocaine treatments for my right elbow and my head. They also have been going well...no problems during treatment (which I was having TONS before - I started to even have kidney problems). But it has completly taken care of the burning behind my arm and I have noticed that it also has started working on the majorly painful spot within the inside of my elbow. The only problem is that once we stop treatment the pain comes back. So I think that we are going to talk about an infusion pump that will constantly pump in Lidocaine! Maybe that will completely make it go away. Right now I am going in twice a week for 2-6 a piece to get pumped full of Lidocaine. The only bad thing is that it is not working AT ALL for my head. I am still getting major headaches and the muscles in my neck are totally cramping constantly. I am not sure what to do about that anymore. They are telling me that they think Botox injections would work, but my insurance refuses to pay for it. And I cannot afford a $1000 per treatment. So I am not sure what to do about my head.

    Here is the only bad part, last night my 2 year old son threw a toy at me and broke my nose (this will be the 3rd time it has broke in 5 years!). My older son broke it when he was 9 months old (he had a temper tantrum and threw his head forward and crushed my nose). Then my 2 year old broke it when he as 1 - he also was having a tantrum. Then last night. My 2 year old did't like something my husband said, so he threw the toy - and it smacked me right between the eyes and POP!, pain and I couldn't see. Then came the purple under the eyes and the bridge of my nose started to swell. This morning it was really red and the spots under my eyes were bruised - but at least make-up helped to cover it up. Unfortunately, my daily dosage of methadone was doing NOTHING this morning and it got worse while trying to work at my computer. My eyes were straining too hard. So when I talked with my doc I asked if I could take anything on top of the methadone. So he told me that I could add toradol on top of that. At least that has taken the edge off the pain. It still hurts to the touch, but at least it is not the throbbing pain I have had all day.

    So...things are finally go well. The only thing is that things are taking a while to heal. I have tons of IV sites from the past month or so that are refusing to heal and go away. I am very concerned about my nose not fixing itself. I am guess that this is due to the Addison's. I have upped my daily dosage a little to try to help.

    Also, the past 2 months I have started to get lumps in my breasts. The 1sy one I found got me into the doc right away. They checked it out and said that it was just a cyst. Well, now I have found another on the other side, and it is MUCH bigger. I asked my internal med doc (not my family doc who I went to for the 1st one and whom I am supposed to see this next month just as a followup) about it all. And he said that the Nadolol that I have been taking can tend to cause these type of things. I have never had anything like this in all my 32 years and then I get 2 within 2 months? I am just concerned that this new one is something. So, I will see when I go in for my follow-up, even though my internal med doc thinks it is nothing.

    So...Things seem to be shaping up...I hate to even say that for things may just start to fall apart and I will end up back at the beginning.

    Thanks for checking in on me. I am still alive. I have started a new business, so I have been awfully busy getting that going. I finally have a littel energy to think about something else

    Amazing what a few drugs can do, eh?

    I hope everyone has a good evening! I will update soon!

    ~Lisa

     
    Old 05-26-2005, 08:09 AM   #71
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Hi Everyone..sorry its been a little bit. I got hospitalized for over a week again. Symptoms got increasingly worse after starting the floricef and midodrine so they sent me to another teaching regional hospital for some answers. What a waste of time that was. Basically got poked stuck and proded and was sent home with no more answers than what i went in with feeling worse than when i started. They tested for everything under the sun, ignored my low cortisol levels because i was negative when it came to the stimulation test for addison's. Took me off all my meds which made everything alot worse. The vertigo, headaches, nausea,vomitting and was constipated for 7 days before they gave me an enema and sent me home, nice eh. They insisted the vertigo and headaches were migraines sent in a neurologist who agreed with me they were not but they ignored that. Started me on partial anti seizure meds and migraine meds which did nothing of course.

    They never consulted Endo and doubled my dose of florinef and midodrine and sent me home, got very ill at my parent's home yesterday afternoon, luckily had a follow up appt at my cardiologist office yesterday with the NP. She nearly flipped when she found out they totally stopped the meds and then doubled the midodrine which she said was way to high of a dose for me. Gave me more anwsers to my questions like it will takes weeks for the meds to work and i will have more bad HOURS then good hours at this point days don't count. Gave me scripts for Alavert for the verttigo may or may not help, zofran for the vomitting and lots of fiber, protein, salt and fluids in my diet will help and forget trying to work for at least the next 2 months minimum.

    I'm glag your brother is improving so much goody, thats awesome. Lisa keep your chin up i know all about the bruises its unreal my arms look gross. Was never like this before. I hope your nose heals well and it will take time for the meds to wrk it will not happen over night hour by hour not day by day.

    JEN

     
    Old 05-26-2005, 08:38 AM   #72
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Wow...Jen, you have had some time of it. I agree that the meds do take some time to take effect. I would definitely try what they perscribe for at least 2 weeks to a month and make adjustments from there. My brother is finding that a betablocker for the blood pressure (catapres) and an antiseizure med for the tremors and headaches is working well. I would try that combo for a while....it did take him a good 3 weeks to feel better at least in terms of having some type of normalcy in his life again. And that was after almost a month in the hospital trying to figure things out and then back in for complications. Please know that there is a light at the end of the tunnel but that you are going to have to find the right doctors to get you there. Don't stop until you find one. My sister in law is a very take charge person, thank God, and she wouldn't stop until they got to the bottom of it. She told the doctors that my brother was still young 43, and couldn't live like that. And they listened. You & your husband need to do the same until you find a treatment that is going to work. You are so young, Jen, and shouldn't settle for anything less than a life that you can somewhat have normalcy. Please remember that. Give these meds a chance.....and yes, they shouldn't be taking you off them so quickly......some you need to be weaned off of. The doctor's you should be seeing are a good cardiologist and neurologist. They should work as a team. Find one or the other that you trust & have them call in the other that you need to follow you as well. That's what I would advise after you try this regimen for a few weeks. If you are not any better you need to go out & insist that they do something to get to the bottom of this. I honestly think you have a sympathetetic nervous system defect.....something rare like my brother that needs a good patient open minded doctor to treat. Don't let these doctor's intimidate you into accepting this quality of living...there is something they can do to make it better & you shouldn't stop until you find the doctor who will make it happen. In the meantime...please know that you are in my thoughts & prayers & that I am here to listen. (((((HUGS))))) ~ Goody

     
    Old 05-28-2005, 11:24 PM   #73
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    I know that I shouldn't have made any "Things are going great" posts the other day...because don't you know it, Wednesday things started heading backwards. I had a Lidocaine infusion on Tuesday, which went just fine...but then on Wednesday I started to get an awful, awful headache...things slowly just started to get worse.

    On Thursday, I went in and had my new lump checked, which he said was a little big, PLUS he found another! (that night I even found another one!) He said that he thinks that it is just another cyst, but to watch it. If it increases in size AT ALL, I need to get my butt in and have another mammogram and ultrasound. If it doesn't change, but is still there in 3 mo (for a follow-up exam), then they are going to do the tests too. Hopefully it goes away. My concern is that the new one I found is up in the armpit area - which I hadn't checked before and neither did the doc. I am just going to watch it and see what happens.

    Anyway...I go to another dr appt for my arm Thurs afternoon...the good thing is that I get to up my hours from 6 to 7 a day at work, the bad things is that my headache was getting so bad I could hardly hold my head up, my eye was watering AND I was to the point of throwing up. Then the dizzy spells came back FULL FORCE! I tried some additional pain meds for my headache - didn't help at all.

    Friday the dizzy spells were awful. I almost fell in the parking lot and almost fell down the stairs at work. My headache was still awful. I had to go to another infusion on Friday...My doc came in to talk with me since I was telling the nurse how bad the past few days had been. He is just at a loss at this point. I am literally seeing him 3 times a week right now because of all of this. We thought we finally had the right mix of meds because I was feeling so good. My arm is going well, but everything else just seemed to take a turn for the worse. We were talking about the headaches...he felt the back of my neck and back, he couldn't believe how rock hard it was. So, after my infusion he wanted me come to his office for some trigger point injections. We think that going back to the chiropractor is a good thing , so I think that I am heading back there next week. As for the dizzy spells, he wanted to see how this weekend went before we decided anything. Oh...and it sounds like I could have to have the infusions 2 times a week for the next 6 months to a year! He is hoping that they may end sooner, but since I was sick one week and the pain came back immensely, he doesn't think it will any sooner. At least the infusions ARE helping though...one thing down.

    I had my infusions - everything went well, although I slept through half of it. After the infusion I went to his office for the injections. Well. while sitting there I just about ended up on the floor - luckily I caught myself on the chair before that happened. He came in and asked how I was feeling since the infusion. I told him about the major spell I just had. He said, "I could have picked you up if I had too"...So I got up on the table to have him do the injections. He came and sat behind me on the edge. He stuck the first one in and MAN did it HURT (it normally only stings at first and quickly goes away). Then he was going to do the next one and I told him and I needed to move over on the table or else I was going to pass out and end up on the floor yet again. He grabbed me and told me he had a hold of me, that he wouldn't let me fall off. LOL. Then he injected me 3 more times. After the last one I couldn't breathe..I told him no more. He was going to do one in my neck to try to calm the muscles down, but there was no way I was going to handle it. But we decided to stop taking the Lamictal. One drug off my schedule. The last time I tried stopping it, the headaches were way worse. So, we'll see what happens here.

    So, today (Saturday) the dizzy spells have been VERY BAD. I am having a lot of issues standing up and walking too far. I almost passed out about 10 times in the store today. I am having a little hard time seeing out of my right eye, and the pressure in the back of my head is incredible. I am having these weird breathing feelings again too.

    I just don't get it!!! I have done NOTHING different to set this off like this...I am going back in for another infusion on Tues and we are going to talk about how the weekend went. This just makes NO SENSE!!!!

    I think that I am going to go crazy...Just when you think you are getting ahead, you go two steps backwards. I has just been the feeling the best I had in 2 years...I thought FINALLY...argghhh!!!!


    Jen -
    Try to keep your head up. As you can see, just because they think that they know what you have, doesn't mean that they can even fix it. I hope that you can find someone though that will listen to you. Please keep posting here and maybe we can help you find some answers.

    Goody2Shuz-
    How is your brother doing? I keep thinking of him each time I am talking with my docs about all this crap. I hope he is getting better.

    Anyway...I hope you all have a good weekend and enjoy the holiday!

    I'll update next week and let you know what we have decided to do.!

    Lisa

     
    Old 06-02-2005, 07:47 AM   #74
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    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    Well i can honestly say i have now passed out for the first time in my life. I had a really bad day Tuesday and was sleeping on the couch (thought for a short nap) which ended up being 3 hours! When i woke i took time to sit up then stand up and i didn't feel "right" wham bam everything went black and when i opened my eyes i was on the couch again..thank goodness soft landing. From there just got worse vomitting (my husband is probably getting jealous of the toilet since i spend more intimate time with it lately). The dizzy spells were horrible just kept me in bed or would of been on my hands and knees crawling to get where i wanted to go.

    My husband and i were trying for a second child when all this came to a hed, so went to my GYN yesterday for some information and input, Well, well he strictly forbid pregnancy right now (no duh!) until he gets more info and we get a better handle (i hope) on this.

    Today is a new day having dizzy spells already and waiting to see the ENDO, hopefully soon going to call again. The medication has its good moments and its not so good moments that it helps, wears off fast.

    As far as my job my boss is very understanding right now. I have a very physically demanding job so i was told i can't go back to work until this medicine starts working all the way or i get better.

    Lisa hang in there they may have to up your dose of medicine the midodrine and floricef do help but your body adjust quickly to them and they start to wear off. At least for me thats what i'm finding.

    Goody i'm so glad your brother is back to work, thats great i wish him well

    You are both in my thoughts and prayers...

    Jen

     
    Old 06-02-2005, 08:29 PM   #75
    mngirl
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    Join Date: Jan 2004
    Posts: 94
    mngirl HB User
    Re: It's not Addison's....It's Postural Orthostatic Tachycardia Syndrome (POTS)

    I ended up back at the dr today...I just can't handle the dizzy spells anymore. He gave me a good shot of cortisol to see if I needed an additional stress dose. He wants to put me in the hospital, but I said that if I don't have to be there I don't want to be.

    So, we are lowering my Nadolol dose to 10mg in the am and 10 mg in the pm - then we are going back to the Midodrine (we stopped it for a week). If things are not better tomorrow I think that I will end up in the hospital this weekend. I had another infusion today too...then started to get majorly dizzy and an AWFUL headache. He gave me Toradol to help with the headache.

    For now I am home...for how long who knows. I just don't get how I can have almost 2 weeks of no dizzy spells and doing great, then WHAM a total 180 and back to incredibly awful.

    We talked today too about going on some anti-depressants...but not until next week since we are screwing around with my other meds through the weekend. I will try anything if it will help at this point. We also talked about trying a nocatine (sp?) patch as well - that is supposed to help with dizziness I guess - some vascular constrictor properties I guess. Who knows....

    Anyway....

    Jen -
    I hope you are feeling better and can get some answers soon!

    ~Lisa

     
    Closed Thread

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    avonex, florinef, medrol, nadolol, nortriptyline, protonix, reglan, ritalin, zofran



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