AJVDK

Sorry to hear about the letter from SSDI. I just got one last week that said they are still loking at all my medical information, and will be lettering me know there answer when they get it all. It seems like it going to be neer ending. Good Luck! Amy

Sorry to here aboult your ER vist. I too have given up on the ER. One they don't now anything about POTS, plus they don't seem to really can unless you are dying right in front of them. Hopefully you start feeling better soon!

They only thing I have noticed is I do alot better in the winter ( or when it cold old out).

Sue, I get headaches alot too. I find that Oxygen helpd, but I still get them. I am not sure why though, I have always I guess just thought it was a pots/ncs thing. Good luck hope you feel better soon!

Well I got about 2 1/2 hours sleep last night. I am just so tired and wiped out. I had to have Blake at Perschool today at 9:00 am so I had to get out of bed! I found myself very dizzy, and I still have the headache. I called the doctor office. They said he would be in after 10:00 and would see what he was to do. So the wait it still on. I am hoping my blood work is back from tuesday. Maybe is just somthing easy that off. Well that I would give an update on how I am doing. I am off to rest till I have to gopick up Blake at 11:30. Thank godness theres no more preschool till tuesday of next week. That way I don't have to go anywhere, and do anything, but try to rest and feel better. Talk to you all later! Amy

Hello, I took Wellbutrin this last summer for a few months, but it was olny a small dose. I didn't really seem to make any improvements. But I know they affect people in differnt ways. I am now taking Cymbalta its in the same class for SSRI. It seems to help some. Not sure if this helps or not.

Well I not thinking that today is going to be a great day, or at least is not off to a good start. I been trying to fall asleep since alittle after 8:00pm and here is after midnight. I am having really bad chest pain, and have a headache that will not go away. The headache started yesterday, and the chest pain started tonight, plus on top of I got the PAC, PVC, PSVT thing going on. I have it before, put this time it really bother me. (maybe just the stress and thing just getting worse) The worse part about it is This is a new year, and new insurance company now that I am not working and there is a $1000.00 out of packet before they start picking up the payments. I only good thing is the reg. office vist are only $20.00. But the bad news is any test, er vist...... is $1000.00 bill to us, before they start paying. So I am trying not to go so..... I am sitting here not able to sleep, so hear I am venting. I just don't know what to do. I know it got to get better at some point. I know at the end of the day we got to hang on to HOPE, but it soooo hard. I know many of you have read my last few posts regarding things are just realing getting me down, and that its been hard with my son. Tonight my husband went to bed early (which he needs his rest he's been working his job, and overtime, then been working on the side to top it off, as I can no longer work) Blake (our son) cames into the bedroom and looked at me and wanted to play, I said I am sorry Blake mommy doesn't feel good right now, but maybe later. Blake looks at me and as he is crying he says "You never play with me anymore". ........... I didn't know what to say it ture, I don't. I don't have the engery too. I can't take it anymore. I hate what this can do to your life. I hate where my life has gone. To top it all off know one in the town I live even understands what POTS is, or that its a real medical problem (not a durg you smoke). I feel like everyone just wants me to snap out of it, like I can just get better because you want me to. Well now that my venting it done, I am going to try to find a way to get some rest, I think sleeping it not going to happen. I guess I will be calling the doctor later, so they can see me, not sure if there is anything to be done though. Thanks for listing to my venting! Amy

Yes I forget, and half the time I can't spell on top of it! Amy

Glad you are ok! I hope things work out for you. I wish you the best, and keep us posted on how you are doing! Amy

Sorry to hear about your day! I hope everything turns around for you. I will keep you in my thoughts! Amy

I use to take midodrine 6 times a day at 5mg. When I went out to cleveland they dropped it down to 2.5 mg at 7am, 2pm, 9pm. I may sound dumb but the smaller amount and timing help me some. I can say it kind of gross, put my head ithes all the time, and my sink feel sometime odd. The times I have stopped taking it it has gone away. I try to keep taking it as it help keep my b/p up.

Hello, I take fludrocortisone the cheap florinef. I also get really bad headaches too. My doctoc had me try Midrin for the headaches and it help alot. I can take up to two pill every 4-6 hours as needed. They only down fall it it makes my heart race somtimes, but using the metoprolol (Beta Blocker) helps alot. I would tlak to your doctor and see what he/ she can due to help with the headaches. I find you need to think hard about what you can live with, and what you can't and go from there. You are the only one who knows how you feel. Hope you feel better soon! Amy

I get head pressure before I get the dizzy feeling, and when I start to over do it. When the head pressure comes on its time to lay down. Amy

Thats for all your input! I think we all have (WTSD) Want to smack Doctor! Thanks for making me smile! Amy

Mind tend to run togeher too. I am not sure why someday the the one maybe worse, but then tend to keep up with each other! I would be nice to just have one at a time! Amy

Can you have all these diffent things and have POTS? or are doctor just grasping for somthing. I been going though my medical records form 2004- till now they have said I have the following: POTS-2005 NCS- 2005 Paroxtsmal Supraventricular Tachycardia-2004 Sinoatrial Note Dysfunction- 2004 Syncope-2004 (I think this is just a lable when you pass out) Tachycardia- 2004 Sick Sinus Syndrome-2004 Low Blood Volume- 2005 Rapid Blood Flow-2005 Depression-2005 (Mmmmm let me think about this one, they cant make up there minds) Orthostatic Hypotension- 2005 I don't know what to belive, I know alot of these are close, I know you can have POTS and NCS, but can you have the rest? To me some of them maybe the wrong dx's. What do you think? I am just trying to get the right treatment to get better, and am getting all the medical records together to find a new doctor for the POTS, part of me thinks don't even bring the records and see what they come up with. Not sure what to think! Amy

I take it too, I take a coated 325 mg aspirin every day, but was told to take it after pacemaker was put in.

A few weeks ago I started gettong really bad pain in my legs and arms. It would keep me up at night. I tryied to just a heating pad and put my legs up on a pillow and it helped some. I talked to my doctor, he said it could be to the fact that I am stuck in bed more and am not able to do much. SO he told me to try to do leg lifts, and flex my mucles while I was lying in bed. It has helped some, but I still have some pain. I am not sure if any of this will help, but thought I would share whats going on with me. Good luck! Amy

Ok this is odd to me but when I get the chestpain, and headaches, some times my lip on the left side goes numb. It always goes away but it kind of odd. The other is i wake up somtimes in the middel of the night to my left twicting (ps?) is kind of odd, and my heart will be racing, with in a few mins. of waking up I will be fine. Amy

Poohbear, Sorry to hear about the vision changes, I have alot of problems with the black floating things in my eyes, about two months ago I started getting blurred vision very bad also. I find I can read about 15- 20 mins at a time before the word tend to run into each other. Some day I can't even read word on the TV. But on my good days, alot everything is fine. I am not sure why ot comes in goes. I asked the octors before and they never seem very worried about it. I am not sure if this is just becaues it a pots thing or they just don't know. Hope it geats better for you, and they doctor find out why its happening. Amy

Congrats on getting published. I really liked the poem. Good luck with your writing you are turly gifted! Amy

Thanks for the update. I just got done with the book You don't look sick. I thought us was great how Joy talked about stepping out of the box, as you may not know you have gotten better. I think somtimes it is better to push yourself even if you get sick at least you had some fun along the way to, and know what you can and can not do. Plus it was nice to learn how she never gave up, from treartment even to the fight with the disablity company. I think this was a great book. I am getting read to order another is then one you would suggest more? I am sit trying to comes to terms my life is changes, and that things will not be the same. I find it been nice to hear how others have come to terms witht here walk. Thanks again for the update! Amy

Thanks for the info, I printed it out and faxed it to my doctor. When I talked to him tonight about my treatment, he said he was going to read it later this week, and see if there is anything that stands out to him! I am hoping this will at least help with the understanding, the the different kinds of POTS. Thanks again! Amy

Well just got a call from my Family doc. Wow I am impressed he called me at 9:20pm to let me know what he wants do do. Cleveland called back today. They are increseing the the fludrocortisonw to two times a day now. ( I am worried about this as last time I blew up and retain so much water) but they are trying to get my b/p up. Also the are changinf the midodrine at night to only 1/2 of a 2.5 mg, but will stay at the 2.5 mg at 7 am and 2 pm. I have to go in for blood work to see where my electrolytes are and then again next week. Dr thinks that could be part of the problem. I also called Dr. Grubbs office today. I bad part is there are into aug form new appointments. Wow I really can't wait that long. There are no specialist here in Iowa which makes in hard to get the treatment needed. I went to Mayo 3 times in 2005, but also saw a ep doctor who said I had NCS. Mayo is only 4 hours away, I am not sure it a diffenrt doctor at Mayo would help or not. The good news is the doctor at Clevelnad is will to help in any way with my treatment over the phone woth my doctor, as we have not been able to receive treatment here from a doctor. I am hoping that we can at least find a treatment to help with some of the POTS stuff I understand I may alway have it but at least what to try toget help with some of the really bad side effect like the headaches, and dizzyness, and it would be nice to get my b/p up! Thank you all for all your input. If you think of anything please let me know! Amy

Now heres a dumb question... but I have seen cardio doctors, and EP doctors but never a neurologist. Do you think it would be worth a short? Do you need a referal to see one? Amy