AJVDK Posted August 30, 2005 Report Share Posted August 30, 2005 Hello All,Well today I went off to another appointment to see my doctor. So I got in my car and drove two hour to see the doctor. On my way there I found myself feeling like i was going to pass out, but didn't but kind of doing that black out thing........ not sure it you know what I mean but I am driving and the next thing you know you are 1/2 in the lane and 1/2 on the sholder. Thank god Iowa put those things on the side that make you cars shake like when you are getting close to a stop sign to know you need to stop, so anyways I was not having a great day, and was not feeling the best. Today I didn't have anyone to drive with, as I thought I would be fine so I turned done the help ( bad move on my part) Anyways I get to my appointment, 1st off I should have know somthing was wrong as I only had to wait 5 mins to be called!(LOL) os I get back to the room and they check the b/p, which was low, no big deal, and then they pacemake guy came it to check to see if there wher any events over the month since my last appointment, there are times where my haert rate is still going as high as 180-190's. I had been feeling like I was having fast heart rates again, but to me, its hard to beleive after having two catherter ablations to the s.note that I am still having this problem. I am just up set and got the one answer I been waiting for a doctor to say, but when they do it the biggest let down. My doctor siad I hate to say this to someone that is only 26, but we have tried everthing, also most of things we would try the other docotrs already tired before you got to us. he siad he felt the meds, may be making it worse but not sure, and does feel there my not be anything to make this get better. He said I just need to learn to deal with being tired rest more, and learn my limits. He said they really are out of options, and treatments, and are not sure what else to do. He said they a as fustrated as I am that I am not feeling better. (I guess I respect they for saying they don't know what to do, but now what?????) He said we would call me on tuesday after he talked to another doctor..... ( so I am sitting here thinking what are you going to talk about?????)So this was my day, I am just down, as I was hoping that they would come up with some great idea of somthing new to try, or anything just to hang on to some hope that I could at least improve. I want my old life back ( I am sure this is what you all want to here me going on about how I want to feel, but how do you deal withit????) I just so hard to keep going for the 1 to 2 good hours I may have that week. I guess I never planed life to be this way, plus I guess I was hoping there, was just a med I could take, or so on to fix it and get on with my life, plus I don't have anyone really taking the time to understand whats going on.Anyays thought I would drop a line to is if anyone has any hope, or ideas on where you go form here! Thanks Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted August 30, 2005 Report Share Posted August 30, 2005 Have you ever tried iv fluids as a treatment? Out of all the different solutions my doctor and I have tried this has been the biggest help. You stated that you have syncope and presyncope and low blood pressure. The fluids will raise your blood pressure and help with hydration which can be directly related to those "passing out" episodes. Many doctors aren't aware of how crucial this is for us or what a relatively easy "fix" it is. Many of us are trying different meds after meds with no improvement but show considrable improvement after receiving iv fluids. Keep in mind this is not "the answer" by any means but it is "an answer" for sure. There have been many discussions about this on this forum so you might want to do a search. Good luck and don't give up even if your doctor feels at a loss. If he is your "Pots" doctor and hasn't considered iv treatment, I would strongly encourage finding another doctor. Many autonomic specialists are prescribing fluids more and more. Good luck!Carmen Quote Link to comment Share on other sites More sharing options...
Ernie Posted August 30, 2005 Report Share Posted August 30, 2005 Hi,I am sorry you had a bad appointment. I feel for you.Most doctors, 99%, tell me I am a dead end case. I used to accept that and was very discouraged. Then I studied for and became a therapist and I was able to manage my own medical care for 15 years until I crashed 4 years ago. Doctors are still telling me I am a dead end case but I don't accept it anymore. I have seen many doctors, many of them only once. Only 4 of them are really helpful: Dr Grubb, Dr Goldstein, sleep specialist and endocrinologist. Doctors who care for me really need to strive on challenge!I have progressed more in the last 6 months then during the last 4 years. Every small progress I make counts and I am slowly rebuilding a life.I know that I will never be cured because my disorder is genetic. My goal is to go to the limit of technology and knowledge and to live my life to my full potential.Keep your hope. You still have a future.Ernie Quote Link to comment Share on other sites More sharing options...
persephone Posted August 30, 2005 Report Share Posted August 30, 2005 No wonder you're down- I've experienced the same thing- just last week. Sometimes I get cross, sometimes I get so down I don't see the point in living anymore.I dunno what to say, I wish I could do something. We're all here for you.I tihnk it's fair to say that for most of us, POTS is a very up and down kind of condition- while it's terrible to have relapses, sometimes it can be a pleasant surprise if you have a mild or brief remission for a bit. I guess I just live for those times... Quote Link to comment Share on other sites More sharing options...
Rita Posted August 30, 2005 Report Share Posted August 30, 2005 It is sad the doctors tell you that they just don't know, but it is great because they didn't just tell you that your crazy. To me this would be great and should really say alot to you about the docs. I know it is really hard to see smething positive at this time, but it just depends on how you look at it. The saleine solution does help as well as steroids. Good luck, Rita s Quote Link to comment Share on other sites More sharing options...
goldicedance Posted August 30, 2005 Report Share Posted August 30, 2005 So sorry to hear about your recent experience. I too had a sinus node ablation to try to slow down my heart. That was back in 1996 before anyone knew that ablations would not help with POTS. That ablation caused bradycardia and I still had tachycardia. Over a few years, I got a lot of junctional tachycardia - rapid heart rate and feeling like I was going to keel over. The only solution was another ablation - AV Node - and now I am pacemaker dependent. After that ablation, I felt better although I still had the POTS syndrome. While I am not an advocate of an AV Node ablation, perhaps you might ask your doc if that may help. I had the AV ablation a few weeks after I had an EP study to see whether the AV Node ablation might help. I thought long and hard about it but decided that I could not go on with the junctional tachycardia. If you would like to talk, send me an email. Don't give up! Quote Link to comment Share on other sites More sharing options...
momofpreciousboy Posted August 30, 2005 Report Share Posted August 30, 2005 Do not give up. As hard as it is and as impossible as it seems you have to keep trying. What kind of dr do you have? Is it an expert? Could you let us know what you have tried, so we can see if we have anything to add? When you feel like you are going to pass out, if you are standing, cross your legs and squeeze them and your butt together for 1-2 seconds. This causes a short rise in bp. It helps me. And IV fluids really do help. I hope you feel better just knowing that you are not alone. Jennifer TX Quote Link to comment Share on other sites More sharing options...
AJVDK Posted August 31, 2005 Author Report Share Posted August 31, 2005 THANK YOU ALL FOR YOUR SUPPORT. gUESS WHAT THE DOCTOR NEVER EVEN CALLED TODAY CAN YOU BELEIVE IT? SO I CALLED THEM AND WAS TRANFER TO A VOICEMAIL OF THE NURSE WHO HAS NOT CALLED ME BACK....... SO NOW I AM NOT SURE WHAT TO DUE. I WOULD LIKE TO TRY THE IV FLUIDS, BUT I DON'T EVEN REALLY HAVE A DOCTOR TO TRY IT WITH. I MADE A APPOINTMENT WITH MY FAMILY DOCTOR TO SEE IF HE HAS ANY IDEAS. MY FAMILY DOCTOR IS A GREAT MAN, WHO DOESN'T KNOW ANYTHING ABOUT POTS, BUT SEEM TO WANT TO LEARN. SO I HAVE AN APPOINTMENT ON THURSDAY. MY ONLY PROBLEM IT I KEEP FEELING WORSE, I AM SCARED, AND DON'T KNOW WHO TO TALK TO, MY HEART BEEN RACING OFF AND ON TODAY, EVERTIME I GO TO STAND UP I FEEL VERY LIGHTHEAD, AND DRIVNG AGAIN TODAY ON MY WAY TO WORK I STARTED TO BLACK OUT, I KNOW I NEED TO SLOW DOWN, BUT I ALSO NEED TO GO TO WORK, I CARRY ALL THE FAMILY INSURANCE AS MY HUSBAND IS SELF EMPLOYED, SO THAT JUST ADDS TO THE PROBLEMS. ANYWAYS THOUGHT I WOULD LET YOU ALL KNOW HOW IT GOING, AND IF ANYONE HAS ANY IDEAS ON HOW I CAN FIND A DOCTOR TO TRY TH IV FLUIDS LET ME KNOW!THANKS AGAIN FOR ALL THE SUPPORT!!!!! AJVDK Quote Link to comment Share on other sites More sharing options...
goldicedance Posted September 1, 2005 Report Share Posted September 1, 2005 So sorry that you are going through this rough spell. My internist rigged up a makeshift IV room for me -- during bad patches, I would spend a few hours at her office loading up on fluids. Just an idea! Don't give up! Keep trying to find the right mix of doctors, meds, and therapies! Quote Link to comment Share on other sites More sharing options...
momofpreciousboy Posted September 1, 2005 Report Share Posted September 1, 2005 I too cannot find anyone to give IV fluids. I am searching out other options. One is a D.O. who does special pain management stuff. I am in the process of seeing if he would do it, as he does other IVs. Just an idea. I know it so hard to be in a situation where no one will help. It should not happen. My drs are the same way--do not call back, sense no urgency, when you feel like you just cannot take it anymore. Sorry, JenniferTX Quote Link to comment Share on other sites More sharing options...
AJVDK Posted September 2, 2005 Author Report Share Posted September 2, 2005 Guess what, went to family doctor today and he said he want to give me a referal to the Cleveland Heart Clinic to see POTS doctor. Only bad thing is we are waiting to see in my insunce will approve it as I live in Iowa, and this is out of state! Please keep this in your prayers!!!!! I just want to find out if there is anything I can do, and find a doctor that really know alot about POTS, as know one around here seems to know. Hopefully i will get good news on friday!!!!!!Thanks again for all the support!!!! Amy Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 2, 2005 Report Share Posted September 2, 2005 Hi,I hope your insurance company accepts to pay. I will be praying for you.Ernie Quote Link to comment Share on other sites More sharing options...
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