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Thanks Jessica, I've never seen charcoal pills. Are they over the counter or by prescription? I do keep trying to drink and eat. We went to the store today and I got several things to try. I'll keep trying to hold on for one more day each day. Thanks again, Denise

Thanks so much for the prayers and hug...I really need it. I'm a little better today...was able to drink a lemon/berry slushy from Sonic. For some reason my stomach doesn't spasm as bad when I put cold things in it? Whatever works right!? My son is doing better also. After he had been in the Army for 5 years he found out he has Arnold Kiari Type 1. He had surgery on it twice and got menengitis after each one. We though it was taken care of but when he deployed last April he started getting bad headaches and getting dizzy again. He was medivaced home and began trying to figure out what was wrong and what he could do to get better. After trying many medications and not getting relief his doctor gave him nerve blocks in his neck. That is really helping. It's suppose to last 3 months and if it does then they'll continue with the shots...if it doesn't last that long then they'll implant a nerve block thing. The stress is that the army is kicking him out so they are trying to figure out what they are going to do and thus the desire for me to live elsewhere so his wife doesn't have to care for me, him, and the baby. I understand but it's still a bummer. I saw my psyc dr today and he actually found an internal medicine doctor who takes medicare and medicaid and also sees his patients in the hospital. Hopefully he and I will click. Also he set me up with a theripist/social worker who will be able to help me find resources available. I'm also going to have a physical therapist and an aide start coming to the house to try and gain strength and the aid will assist me with my personal needs so this will help with my stress levels I hope. Thanks for the website...I'll look into it. In the meantime I'm going to try to take things one day at a time. Thanks again! Denise

I'm kind of stuck between a rock and a hard place again. Just got back out of the hospital on Friday and will probably have to go back in tomorrow as I'm not able to keep much of anything down. I'm dropping weight fast and am weaker than I ever have been. My EKG's are now abnormal although they can't figure out why other than dehydration. I'm so depressed that I'm about to quit even trying. I've lived with my son since 2004 when I was no longer able to work but now he's married and they have a son. He has health prob's also and is going to have to get out of the army so they are very stressed also and he told me that my living with them isn't going to work so much. He wants me to go into an assisted living facilty but I have no way to pay for it. Disability doesn't pay enough to live on. I know I'm rambling and I'm sorry I just can't seem to think in a straight line anymore. I live in NC...does anyone have any ideas? Oh yeah...I'm fighting with the hospital dr's and my gastric dr because I'm on a fentenyl patch as well as dillaudid PRN because with my rollarcoastering BP I have a migrane more often than not plus terrible back pain due to cysts. I know narcotics slow down a GI track that already doesn't work well but not taking it would be more than I could handle. Someone please help me...

Thanks for the response...hopefully I'll get more answers once I get in to see Dr Thompson. Will have to see about getting a PCP first to refer me. Right now I fly back to NC on Sunday to meet my new grandson and then will make the drive back and get started setting things up. Take care! Denise

Hi All...I've been in Pensacola FL for a couple of weeks to help my father care for my mother but I missed a doctors appointment while here and ran out of a couple of my meds which triggered a crisis for me and sent me to the East Florida Hospital. I hate going to the ER because so many doctors don't know about dysautonomia but was pleasantly surprised. The dr I had said he unfortunatly has a daughter with the disease so he was very knowlegable and helped me out with no problem..whew! I'm also excited that now that I'm here I'll be able to get in to see Dr Thompson since he has dysautonomia as well. By the way...do any of you have cysts that grow along your spine? I'm just wondering if this is part and parcel or something totally seperate. Thanks, Denise

Hi, While I'm not on that med I can sure relate to not sleeping well and having bad reflux. I'm lucky to get 2 -3 hours a night so I constantly feel tired. I've tried Ambian also but it didn't help at all. My son had some lunesta once so I tried that and it seemed to help a lot so I got my dr to prescribe it but then my medicare insurance wouldn't agree to pay for it saying I needed to take Ambian UGG! Even after the dr sent them a note explaining that it didn't work they wouldn't approve the lunesta and as it's pretty expensive I can't afford to purchase it outright. I hope the side effects go away since it seems to help you otherwise! Take care!

Ok cool...my disability date is June 04 so I should get it right away then. Thanks so much!

Hi Everyone, Great news! My SSI has finally been approved and I wasn't even at the hearing since I was in the hospital since I accidently overdosed while having one of the latered mental states I have with this disease. My question is does medicare automatically come with SSI disability? I went in for a food stamp review and the lady there told me that it doesn't and that worries me very much. I've called my attorney and I'm sure she'll call me back soon but thought I may get a quicker answer here. Hava any of you been told that your meds have made you toxic when having altered mental states? Thanks! Denise

Hi all! After a very long wait I finally have a hearing date. I know a bunch of you have already gone through this and I'm wondering what to expect during the hearing and if approved (I pray) how long after the hearing does it take to begin getting benefits? Also...does anyone else have altered mental states with POTS? Occasionally when my BP is really rollercoasters and I'm in bad pain it's like I check out. I'm still moving but not appropriatly and can't answer question...pretty much say yeah or no when asked a question and have gotten violent a couple of time when people try to make me do something during this time. I have no memory of it afterward and the couple of times my kids have taken me to the ER they think I've OD'd and pump my stomach then decide it's psychological but the psych dr's say it's medical. What do you think? Thanks, Denise

I too have trouble with sleep. I'm lucky when I get 2 -3 hours a night. I don't sleep during the day either and I'm sure this is why I have no energy to do things. It's interesting about the Flourinef possibly causing the sleep issues. Perhaps decreasing my dose will be a good thing. Hang in there! Denise

Thanks for the responses. No my adrenals haven't been tested. I plan to ask him to do that. I was going to try the med to see how it would work for me but haven't been able to get it. The pharmacy on base no longer carries it and they haven't been able to get hold of the doctor to find out what he wants to do. I have to get meds that are on the military formula since I have no money to get meds off base. Denise

Julie, I'm sorry to hear about your brother. I'ts awful that his employer and co-workers are so uncaring but it's great that they are getting support from his wifes school is steping up to the plate to help. I'll keep him in my prayers and hope everything works out and that he'll be allowed to to home soon. Denise

I haven't had that test...probably because it's so difficult to get blood from me. I have no veins and my port a cath won't allow blood to be drawn. The doctor doesn't want to replace it unless it won't let fluid and medicines in because I'm only 41 and could run out of sites to put a port in. As I'm sure you know when my blood pressure bottoms out the first thing they want to do is get me on IV fluids. The doctor is going on the assumption that the problem is my adrinal gland. I'm not sure about that. I really wish I could find a doctor who's really knowledgable about POTS. My SSI claim is in the second phase and I can't get medicaid without a determanation so my options for health care are limited to military doctors since my son who is in the army has claimed me as a dependant.

My doctor has decided to reduce my flourinef and add hydrocortizone. Is anyone else on this med? I'm worried this will cause more problems instead of helping. Any info will be greatly appreciated. Thanks, Denise

I totally understand how you feel. I didn't move in with my mother...I've moved in with my 21 year old son. It's hard to do when you feel you should be self supporting but can't do it. There are days I'm lucky to walk from the bed to my recliner but I'm lucky that I still have some good days too. I have found it helps to just live in the moment as much as I can. Thinking about the future is to stressful and is unproductive since I don't know how I'll feel in an hour much less next week. Also I try to set myself daily goals depending on how bad I'm feeling. That way I can feel I accomplished something during the day even if it's something small. I don't know if this helps but know my thoughts and prayers are with you! Denise

Thanks for that info! I'm in the process of my 1st application and will be sure to bring that up. Thanks, Denise

Hi Mary, Sorry it's been so rough on you. I too have migranes and can totally sympathise with you. When it gets so bad you have to go to the Er it's like "Hey! Give me fluids, drugs, and when I start to feel more human we'll talk." Doesn't work of course but dang..... I hope the weather settles out for you, that's one of my triggers as well. You're in my thoughts, Denise

Hi Merrill, Sorry you've had a hard time of it! Glad you're feeling somewhat better now and that you didn't take the immodium. I have IBS and if I were to take that I'd get an illius (sp). When I have an attack of IBS all my discomfort is in my belly...at least until or if I get dyhrated. When it's a gastro infection I feel totally crummy all over right away and usually am vomitting as well. I don't know if this is true for other IBS sufferers but I am also extremly suseptible to every stomach bug that's out there. Sounds like you are doing the right thing with a brat diet. I hope you continue to get well. Denise

I'm sorry you're feeling so crummy. Hope the antibotics kick in and let you feel better soon. I did gain weight while on Zoloft but it was at a time when the Dr's were changing my meds around so I couldn't say for sure if it was the problem. I'm sending you happy thoughts for a speedy recovery! Denise

Hi Ling, I totally agree that it's a great way to get exercise. I got the Pilates for Dummies tape and work with it every day I can. I'd love it if that was everyday!!! Denise

Good luck. Hope he calls back soon and really listens to what you need from him! Denise

My four hour test was a nightmare for me. I got so sick I ended up in the ER and my family doc said that it showed that I rollar coaster. I'm not diabetic per se but have to really pay attention to when I need to eat. I've had quite a few doctors immediatly ask me if I was diabetic when told I have dysautonomia so I always assumed it went hand in hand. I still feel like I know so little about the disease I'm dealing with. Hopefully I'll get more knowledgable since there are so few doctors who really know about it. Denise

I'm sorry you had such a hard time. I am not comfortable in really crowed places and it causes increased HR but unless my BP drops I do OK. A couple of weeks ago I was in a grocery store and my BP dropped, my mind went fuzzy and my speech started slurring. I was accused of being drunk. Thank goodness my son was there and got me out of there and back home. I don't know what I would have done had he not been there. Were you eventually able to gain control? Have you tried breathing exercises. This helps me to gain some control when I'm in pain..perhaps it would help you. Good luck, Denise

That is scary! My grandmother too died from Alzheimer's and my parents think one of my grandfathers had the disease as well although he died in an accident. My grandmother was a really sharp lady and showed no signs of early cognitive problems but my mother has had some cognitive problems for a long time. When I was younger I used to call her a ditz (mean I know but I was young). No one else in my family shows signs of dysautonomia but my son had a kiari malformation repaired last year. I know the literature has been saying to reduce stress for years now and more &more problems are being attributed to stress but it's sometimes easier said than done to reduce stress, especially when you feel you have no control over things. Exercise is suppose to be good for stress but wow is that tough to do now. I guess what will happen will and we just have to do what we can to make our lives the best they can be in the present and deal with what happens when it does. Denise