DSM3KIDZ

I just got denied also. I meet with a lawyer on Monday and sent in my paperwork for the appeal. I wish this process wasn't so hard but with so many people trying to fool the system it leaves real sick people like us fighting for what we deserve. Good luck Dayna

Well I was dx with autonomic neuropathy. Mine came on basically overnight. My neurologist says it can go away, get better, stay the same, or get worse. I was like geez thanks for the insight. Anyways she said with proper meds and exercise she has seen alot of people improve. I have improved in some areas (gastroparesis) while declining in others (POTS) so I'm unsure the outcome. My dx was based on ttt, breathing test and sweat test. I think the non sweating is what determined AN. I'll be interested to see how others reply. She sometimes calls in autonomic neuropathy and sometimes autonomic dysfunction so I think it's all the same as dysautonomia. Dayna

I was so concerned when I saw your post. I'm sure this is just a small bump in the road. I know how scary it is to feel things are starting up again but it could be contributed to many things. Get the rest you need and hopefully this will all pass. Dayna

Well I called my doctor and he said to stop effexor. I'm having way too many side effects for such a low dose. Well I asked what else I could try and he said nothing. My body reacts negitively to SSRI's and there is nothing I can do about that. I said I only tried effexor, zoloft and lexapro so I know their are a million more. He said if I had trouble on those I'll have trouble on all of them. I don't believe that but maybe it's gods way of telling to work through this without meds. I told him I wanted to try zoloft again since I got the furthest on that one but I'm going to cut it in 1/2 12.5 than in 1/2 again. I need something since I'm freaking out about everything unless my husband is with me but that's not fair to have him hold my hand through life. Everyone wish me luck because this is my last trail and I believe the next month will be **** on zoloft since it was the first time. Thanks Dayna

I noticed since I started effexor xl (3days) My hr jumps alot higher than normal. It usually jumps to 105 when I stand up but now it's 120-125. Did anyone else experience this while adjusting to SSRI's ? I also have a 3 day killer headache.............I hope subsides soon. Dayna

I decided to try the effexor xl. Day2 and I have a headache and am dizzy but no nausea or agitation so far. Anyone else have headaches on this med? Did they go away? Dayna

Let's just say my first pill was 1/2 and I ran to the bathroom 10+ times. But I think it's short acting so you could give it a try. My diahrea lasted about 2 hrs than no more for the day. Good Luck Dayna

It caused me crazy diahrea but I'm unique seeing that I get bad side effects from everything

I must add that my health has to keep improving otherwise I can't do it. I don't want my kids to see me sick everyday but by keeping my fingers crossed and eyes on the Lord if my situation stays or improves I can totally handle it next year. Thanks for all your responses Dayna

Thanks sue and spike. These drugs scare the crap out of me. Maybe I should find another way to deal with my anxiety attacks. any suggestions? These are new for me. Dayna

Do they just go down a list and hope something will work? I have been having mini anxiety attacks and my psychiatrist suggested trying another SSRI. Well he said effexor would be best for me. I'm scared to take because of people's withdraw stories but I don't want to be housebound due to anxiety attacks from POTS episodes. Does anyone know if Effexor is bad for pots patients because it is an SNRI (I think). The what helps area says Venlafaxine (effexor) is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. Anyone have success on it? I only had 15mins with him but I wonder why he didn't try something like Paxil or Celexa. They seem to be more easily tolerated. Suggestions anyone? Dayna

fortunately it does get easier. You transition your life and this ends up being your new normal. It took me 2 years of fighting change and now I have happy memories of my healthy days but this feels somewhat normal to me now. I also have improved alot since becoming first ill so maybe time will heal your body to a place you can be comfortable with your limitations. Hang in there Dayna

She is in my thoughts all the time. I really hope she is okay. I wonder why she hasn't responded. Dayna

Me and my husband are probally going to homeschool starting next year. Does anyone here homeschool or have they homeschooled? The only thing I'm nervous about is my brain fog. I sometimes feel stupid-really. My husband and I are going to partnership on it so I'll have his brains and the internet and library for research. Does anyone know of any natural supplements that helps with brain fog? Dayna

I PM'd you re: our wonderful neurologist that I refuse to see anymore. Dayna

I know your upset and it will take some time to move forward but you will and their are caring compassionate people out there that will fall in love with the person you are and not for how much you go out. Try not to get too sick over this jerk. You have to take care of yourself this while stressful issue could really affect your health even more. ((((((((((hugs)))))))))))))) Dayna

Thanks for all your imput. I'm by no means am a hermit and try to tackle my life on a day to day basis. I never had anxiety before this illness so that's why I'm unsure of what my body is going through. I'll take some anti anxiety meds with me and if it helps than I'll tackle the anxiety part of this. If it doesn't than I'll have to get used to that scary feeling. and move on from there. For one, I DEFINITELY overdo it. I still try to be super mom and super wife and keep up with my friends whenever I'm having a good streak. I just want to enjoy life and everyone tells me not to over do it when I feel good but I have to, it's just my nature. I just know I'm not alone in all these strange symptoms which helps me feel alittle normal in our POTS world. Thanks all dayna

I'm right with all of you. When I say I'm doing pretty good lately like I just told my dad yesterday, he thinks I'm cured. Well if he called today he would realize I'm slipping down the potshole again and just think I'm "selective" with this illness which is not in my personality at all. I truly think alot of people feel I'm faking because it is so up and down. But the close people to me know I'm not lazy and how frustrated I get when I'm non functional. Dayna

You don't need to compare yourself to the others on this board and no matter where you are in this illness you still have all rights to vent. Everyone with POTS life is affected in some horrible way and I'm sorry to hear about your hair loss. I have gained weight since getting sick 2yrs ago and can't do much exercise so it's out of my hands like your hair loss. It's very frustrating. To me appearance means diddly squat. It's who you are as a person that matters. Hang in there and I hope you start to feel more chippery soon. Dayna

I have been nervous to go to certain places in fear for having prefainting spells. They scare the living crap out of me. I have never had an anxiety attack so how do I know if I'm experiencing a pots spell or an anxiety attck? The room starts to spin and I feel my heart race and I get super nervous. I feel real scared and then my hearing gets muffled. After this I'm real shook up and feel sick for a few days.extrememly potsie. I'm just scared that it's anxiety and I'm going to be scared to do anything. I already won't do field trips with my kids in fear of one of these episodes and I get nervous if I have anything planned. What is your opinions on this? Anxiety of Pre fainting spells. Dayna

My heart aches for you. I know what betrayal like that feels like. It will take alot of time to heal but it will happen. I hope your financials will straighten out soon. Dayna

AJVDK-I hope you hear something soon dawn thanks for the information. I'm not looking to adopt anytime soon I'm hoping I'll find the magic cure in the next 3yrs dayna

Thanks guys. My only fear is I have this intense desire to adopt in about 3 yrs. Does anyone know if getting benefits will affect my chances to adopt? can you adopt if you technically disabled? I know children are hard but my husband is amazing and is actually the one looking into adoption. So I won't be alone. I know it sound weird, I can't work but I can raise a kid but like I said that is ONLY because of my wonderful husband that I do such a good job with the 3 kids I have now. My one and only job is caring for them everything else I do when I can. Dayna

I have gastroparesis also. Mine was horrible nausea for 2yrs. It seems to be getting better. It waxes and wanes so I'm not sure if I'm just having a good period but since starting Flornief and Wellbutrin the nausea lessened although not completely gone. Have you tried meds to manage POTS ? Just wondering because I know of another person who is now managing their illness of GP after getting treatment for his NCS. Hang in there. go to gastroparesis at yahoo groups. or www.G-pact.com maybe you'll find some answers there Dayna

Well I was denied. I expected it. I've been feeling pretty good the last two months except for my lightheadedness and pre fainting spells that come occassionally but I still know I don't have the energy strength or stability with my illness to hold down a job. I'm debating whether or not to appeal. What is involved in appealling? If I hire a lawyer will he handle all the paper work for me? Any advise woul be great. Dayna