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AJVDK

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Posts posted by AJVDK

  1. For Those Of You With Headaches...

    in Dysautonomia Discussion

    Posted

    Sound like the migraines I have. Do you have a nero doctor? Have you had a work up yet? I would to make sure it is nothing more then a migraine. Once they know it is one there are many drugs the can use from once to help with the pain to meds that prevent them coming one.

    Also I have had Duodenal Ulcers for years. SO I take a med for them, and then take the med for the migraine. To me even if my stomach gets up set I will take it over the migraine.

    I hope you get some relief soon! :)

  2. Home From Hospital

    in Dysautonomia Discussion

    Posted

    I agree with Nina. I have a pacemaker and my heart rate never goes below 70 bmp. When the turn my pacer off when testing in the office it goes down right away in the 30's. I would be sick, if my pacer was not pace where it is. It does casue problems with my pots, but i can deal with it.

    I know that with all the problems I have had, I keep pushing for a docotr that will listen. If you think there is more going on, you know your body better then anyone else keep pushing for answers. If you don't think you are getting what you need keep going.

    Good luck, I hope they get to the bottom of whats going on soon for you!

  3. Lyrica For Migraines

    in Dysautonomia Discussion

    Posted

    I tried Lyrica for migraines, and it man my pots worse. I am not sure why. No my grandma is on it and it works great. I think is person to person of this drug. For people that it works for thought it seems to really help. I hope it works for you. ( I just got but on Depakot for migraines two weeks ago, I am hoping this will help me, they said it could take 6 weeks before I know. I hope it works!)

    I wish you the best, and soon some pain free days ahead! :unsure:

  8. Home From Hospital

    in Dysautonomia Discussion

    Posted

    Donna,

    First off I am sorry to hear you where in the hospital. I my self just got out last week after being in for 7 days its not fun. One thing I can say is never give up! There got to be something, somewhere that can help. I know the feeling things are getting really bad for be as well. I just got a new PICC for fluids at home, but as well my b/p it too low. They keep changing meds as well.

    Mayo might me a great idea, or Cleveland Clinic, Dr. Grubb, EP doctor, and one that could help put a light on what?s going on.

    I can say one thing there is a great support here at Dinet.org. We are all here for you! I wish you the best and will keep you in my thoughts and prayers!

  9. Here's A Little More Of What Was Going On While In Hospital

    in Dysautonomia Discussion

    Posted

    Hello All,

    Well I said I would post when I was feeling a little better. Why is it, all you want to do is come home, and yet when you get home you can not sleep.

    Anyway, I went to my doctor appointment today and found out the reason it was so hard to treat the sepsis, was because I ended up having two different bugs in my blood. I had one that was a gram negative, and one that was gram positive.

    Also my blood work is still showing I am low in potassium, and that my electrolytes are still off. So hopefully everything will get back to normal soon. They started me on Levaquin to keep fighting the sepsis, to make sure it doesn?t come back. Also now that I have a new PICC I can get back to the fluids at home. I am afraid of getting sepsis, but I am more afraid of not having a life.

    While I was in the hospital I got a spinal tap, and lots of blood work, also the good news is I finally have a Neurologist to follow my case. So he also started me on meds and will be following up with me and keeping an eye on things. I am hoping that we can get the headaches under control along with all the vision changes!

    Also While I was in the hospital an opening finally came avabilty to see a LLMD. So I am going to an appointment finally with an LLMD on 2/8/07! I am hoping they will be able to shine a light on things, but who knows maybe after all the abx I had in the hospital maybe be killed it off! (Wouldn?t that be nice).

    So that?s a little up date to what?s been going on here. Hope all is well with you. Thanks for all the prayers and support over the last week! I going back off to bed, O can not believe how tired this makes me!

    Talk to you all soon!

    Amy

  11. I Just Got Home!

    in Dysautonomia Discussion

    Posted

    Hello All,

    I wanted to thank everyone for there thoughts and prayers. As most of you know I ended up in the hospital with sepsis. I had to spent 7 days in the hospital :blink: . I just got home and am very tired and worn out but I wanted to post that I am finally home!

    The doctors said it could take 3-4 more week to get back to where I was when I got sick. It's kind of depressing as that wasn't a great place. ( But it could always be worse, and I will get keep going and betting this.)

    I finally got a new PICC, so I will be able to due fiulds again at home. This was a hard one as many of the doctors didn't want one placed again as I got sepsis. SO they did a test the held fluids, other the the antibiotics, and I ended up on the bathroom floor by noon, so they started me back on fluids. ( I guess they learned a little about POTS!)

    Well I am off the hook up to fluids, and take my antibiotic!

    Again thank you all for your support!

    Amy

  12. Iv Saline

    in Dysautonomia Discussion

    Posted

    Rita,

    Sorry to hear about your appointment. If you beleive this is your best option getting the IV, then keep pushing, it took my a year to get the doctor to listen, but now after they are see the difference they are keeping the orders. Listen to you body, and you know whats best, if a doctor will not listen go to another. It's sad that we have to do the work, and fight for treatment, but it seems that the only way to get things done. I wish you the best and keep us posted!

    Amy

  13. Iv Saline

    in Dysautonomia Discussion

    Posted

    So your club is it going to be BYOT (Bring your own tubing)..... :)

    No really if nothing else has worked I would really look into a picc and fliuds at home. To me doing at home know on has to know, plus no one seem to know about pots, so you don't have to explain it every time. For me I have the same nruse every week, and she is really nice, the rest if the time I am no my own, plus I get to pick the time I do the fluids, I like to do them at night, ad then I am already laying in bed, wacth tv, so I am not feeling like I am missing too much. ( Just my thought) Anyways wish you all the best!

    Talk to you later...... may be at the club! :P

  15. What People With Pots Benifit Fropm A Pacemaker?

    in Dysautonomia Discussion

    Posted

    Be carfill with thinking about a pacemaker. I was told I had SVT, and that the only way to take care of the problem, due to meds not working was an abltion. So now two abltions later, my heart rate was too low, and now had to have a pacer placed. Two months after having the place place I was still having problems in fact felt worse after the pacer was placed so I went to Mayo for a 2nd option, that when I found out I had POTS, and they said one of the worse thigs you can do it you have POTS is to have a pacer. I beleive it as I have never felt good since it was placed. ( This is just my option, but please becarefull when thing about on, get a second option before jumping in, if I could go back I would had never had the first abliton.)

  16. Iv Saline

    in Dysautonomia Discussion

    Posted

    My cardio wrote the orders for the Saline (9% Sodium Chloride), heparin, and the PICC line. Now my family doctor does the orders. I get fliuds every other day, and a health care nurse comes once a week to clean the dressing on the PICC, makes sure I am doing ok and bring supples. It took almost a year for me to finally get my doctors to right the orders. We tryied everything before going to fluids, from drinking not stop, to drug tht make you retain water, compression stockings, ans so on. Finally as we last try I was started on the IV Fliuds. It does help alot, but I would only do if nothing else has worked. There is a high risk of infection, ( more if you have a pacer, like I do), plus all the lost time being hooked to an IV pole, and having to travel with extra stuff, and the cost of the PICC line, and supplies, nursing care. I know it has helpped me alot, but I want you to know the down side too. I wish you the best! <_<

  20. Thank You, And Happy New Year!

    in Dysautonomia Discussion

    Posted

    Hello All,

    I wanted to drop a line and thank you all for all the support, prayers, thoughts, and emails I received while Blake was getting ready, and then going thought surgery. Blake is doing great now. The doctors said this will the last surgery!!! Yeah! We are so happy. Blake will always sound wheeze, and may not we able to run fast, or play sports, but I am going to finally have a healthy son, who is going to have long life now! Two years ago I didn?t now what to think when the found the mass, but things are great now. We are truly blessed!

    As for are Christmas, we went home, and spent the holidays with my family. It was nice to see everyone. (I felt kind of dumb going home with an IV pole, pump, a drug box full of supplies, but o?well I guess) Although one of the family members had the flu, so needed less to say I got sick, so I was down 4 days with the flu. I was kind of funny though, my husband kept saying, I not going to get it, I never get sick, guess what he got sick. (Why is it too that men are so whiney when they get sick?.)

    I hope you all had a Great Christmas and wishing you all a Happy New Year! Also Thanks again for all the support thought everything going on with my son!

    Amy

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