scarfgirl

What does the sweat test determine? I mean, I'm guessing it'll say you sweat too much, but of what significance is that in figuring out what type of POTS you have?

Salt never did anything for me. Neither did fluids. I finally quit the salt/fluid thing as it didn't help the wooziness, and woozy people can't get up to pee 20 times a day!

Thanks for the input guys. I can't believe some people found 5mg to be too much when sometimes after 20mg I've fallen right back asleep! We're each so different.

KayJay - I don't have the hyper type of POTS. A lot of doctors won't prescribe Ritalin to adults. I had to see a psychiatrist to get on it. Apparently regular docs take a lot of grief for prescribing it.

I don't have thyroid problems, but I believe Dr. Watkins at the Birmingham clinic said it was probably only a matter of time before I did. He was talking about my thyroid shutting down though, so I don't know if what you're going through is the same thing he was talking about or not. I've never had a scan, but I'm supposed to get a blood test done every six months to check it.

Caffeine helps my energy and concentration big time. I drink two cups first thing in the morning. I don't drink it if I wake up tachycardic, and I don't drink it every day b/c I can build up a tolerance fast. I also make sure not to drink any past noon as it will keep me up. I often use it to replace my morning Ritalin dose.

I'm meeting my psychiatrist tomorrow to discuss more treatment options for me. Currently, I take Ritalin, and it helps my energy, if not my concentration. I take the 4 hour, up to 4 times a day. My dosage is 10mg. It's a pain b/c Medicaid doesn't want to pay for it, but it gets me moving around more than anything....basically works for me the way Midodrine USED to. I tried Adderall years ago, but it made me crazy/suicidal. No such problems with Ritalin.

I wanted to know who else on here takes Ritalin, and how they take it. Extended release or short term, what dosage, etc? Do you take it by the clock, or as needed. What benefits do you get from it, and do you have any major side effects on it? Also, if you've had success with a similar drug, what is it?

Kexia -

Visit this website-- www.iaccheart.com/dr_davis.aspx --for Dr. Davis. He treats new patients and he is close to you. I don't know about the insurance issue, but I can tell you that he treats a woman with one of the worst cases of Dysautonomia and he is one who cares.

Blessings,

Robin

Thanks Robin, I'll check into that.

I've tried the word of mouth thing (that actually worked in Seattle), and the calling around thing, but I haven't found anyone in GA who treats POTS. There's a few doctors who will diagnose, sure, but that's not the same as treating at all. And when it comes to a PCP, there's only two doctors in this podunk town, and both are perfectly happy treating sinus infections and diabetes all day long.

I wanna go some place where I spend a whole day having tests of all sorts run on me. If I could narrow down the type of POTS I have, and get a clue as to what causes it, I think I'd be able to find a treatment that works. Beta blockers and florinef are not my answer, but that's the only suggestion I'm ever given. My 'specialist' scoffed at Midodrine and said he was glad it was being taken off the market, even after I explained that it was the only drug that ever made a real difference in my activity levels.

Friday7, sorry to hear you're in the same post, but it makes me feel better to know I'm not the only one with this problem. Thanks for sharing

I'm tired of a local GP who can only say "You need to speak to your specialist about that." , and a specialist that I have to travel six hours to visit only to spend 15 minutes with him while he totally ignores my questions and just reads from some dysautonomia script. I still have no clue what might be causing any of my symptoms and no one wants to run any tests on me. I haven't seen any real improvement and I've been sick for a decade now. I want a good doctor, damnit. I'm limited though, in that my insurance is Medicaid and Medicare. Medicaid can only be used in the state of GA, so I'm pretty sure any place I eventually find will only take my Medicare, which doesn't cover a whole lot and isn't accepted at a lot of places. Still, if I have a pretty good guarantee that I'll get some results from my visit, I'm willing to risk the debt. Anyone have any suggestions? I'm in South Georgia.

I'm skeptical of the Candida bit. If you go that route, make sure you have a PCP test you, not a nutritionist from a health store.

The Neti pot is WONDERFUL! I had to have my sinuses scraped, and after that I still have to go on antibiotics more than I like, but that's probably because I don't use the Neti pot as regularly as I should. Someone on this board told me to use it as hot and salty as I could tolerate. Great advice!

I had horrible pain, bloating, and constipation for a long time. I didn't think I'd ever find relief. Antibiotics and, oddly enough, Immodium Advanced (if that's the right name) finally got me back on track.

An earlier doctor once recommended fiber supplements + stool softeners, but I don't recall that doing much for me. Laxatives helped, but only short term.

How much do you take, and when do you take it?

What does this drug do for you. What, specifically, does it help with and what symptoms are alleviated most?

The reason I'm asking: My Dr. keeps pushing it on me, despite the fact that I can't really tell it's doing anything, might be adding to my fatigue, and he never really clearly explained how it should help me in the first place. I only know some vague 'it resets your autonomic system somehow'.

I hope it's ok to post this. I made friends with someone I think I met here and we stayed in touch via Facebook for a while. She gave me her gmail address b/c she was leaving Facebook, but when she closed her Facebook acct, I lost access to that info. So if anyone on here is Anna Besse, please PM me with your gmail again. Or if anyone knows who I'm talking about, please let her know I'm looking for her. Thanks.

Stacy Lindsey

I didn't want to digress too much from friday7's post about volunteering, but I saw all the posts about reclining wheelchairs. I never knew such a thing existed and now I'm kind of excited. Do they also make ones where you can put your feet up, instead of having to have them hang down? And does anyone own a wheelchair like that? I swore I'd never own a wheelchair, but I might change my mind if there's so many options. With something like that I could go anywhere. If nothing else, I could use it as a really expensive gaming chair, instead of making everyone rearrange the family furniture just so I can play XBOX.

One last question: Will Medicaid/Medicare help pay for one?

HI.I've been feeling for a while that I would like to get a volunteer job, but I am afraid because I have such unpredictable symptoms and people have a hard time understanding that.

I have never had a time where it was dangerous for my health to be working/volunteering.So it's not like should feel responsible for putting my health in jeopardy. But I do have limitations.

For instance.Well here's my list of demands.LOL

I need to be able to come and go.I can't have a day where it is absolutely necessary for me to be there. I have to be able to work for short periods of time and have breaks when I need them. I have to have a place to lie down if I need to.

This is the one that I worry about.But really it's not that much of an inconvenience.For instance once when I was in a partial hospital program, there were couches in one area, and in between groups I would recline for ten minutes.It got me through the day,and didn't hurt anyone else. After lunch I was able to lay down in an empty room, on the floor but I didn't mind..It also got me through the day.

The thing is. I had a couple of experiences with people not understanding this and making me feel like there is not place in the world for me unless I was completely well. It sounds like a distorted thought to me, but yet after the experiences I've had I kind of believe it.

One time I was attending that same partial hospital program just a a different year. I got sick, felt faint and wanted to lie on the couch. They refused and said it wasn't possible because there were people that were depressed and that they would then want to lie down on the couches if they saw me doing it. It didn't matter that I was sick, all that mattered were the rules. I understand the rules but if someone is sick you need to bend the rules. But no. So, I had to sit in a chair, and wait for my Mom to come pick me up. So while sat there in stead of lying I get worse and worse..By the time my Mom came she had to take me out in a wheelchair. I spends the next few days feeling horribly sick.

This could have all been avoided by letting me lay down on the couch. It made me feel horrible. Not physically but emotionally. Here was a place I was supposed to be getting cared for in and they were ignoring my needs.The only one that really helped me was another patient. She stayed with me and got me water. The staff just let me sit there.

It was a horrible experience, because it felt as if they were saying we don't care.

When I brought this up to my therapist there. She kept explaining why they did what they did and didn't take my said at all. I never felt safe there again.

I guess that experience has never left me.

But a few years later I was really depressed again. I needed help and tried to apply at the partial hospital again. Due to the fact that I couldn't even travel long enough to get to the one I went to before.I applied at the same hospital only a different branch, near me. The person on the phone was explaining how they couldn't accept me because I couldn't come all five days. I explained to her that I had attended before and that they let me come for three days. But then she told me they couldn't help me and I should go somewhere else. I explained that there was no where else for me to go. She kept telling me how it wouldn't work and was developing a tone. I told was trying to tell her how they allowed me to come to the other branch of the same hospital for five days and then cut it down to three after a week..but she didn't want to hear it, and was becoming even more abrupt. So I got upset at her..I didn't yell or call her names, I just kept asking her where I was supposed to go and trying to get her to understand that I needed help..and she hung up the phone!Now keep in mind this is a place that deals with people on the verge of suicide! I mean, could you imagine?! I couldn't believe it. So, I did something I would not normally do, I called her supervisor and told her what happened. She was very good. She apologized. And offered to let me come and basically did what the first girl should have done.

Only problem was after that, I again never really felt safe there.I mean that's all you really want when your out there.Just the knowledge that if you feel sick someone will be compassionate and understanding. Also because of my nervousness about not feeling cared for, I kept thinking 'what if I get sick, they wont' understand, They will throw me out', and stuff like that. Anyway, the anxiety produced more POTS symptoms of course and I wasn't able to attend. The thing is If I had felt welcomed right from the beginning this probably wouldn't have happened.

I still have these experiences in the back of my mind and I feel that no one wants me because I'm not normal. If I was normal I wouldn't have needed these people in the first place. I don't feel that anyone would understand. And all I'm asking for for really is understanding.I'm not asking for them to build a ramp for me or add parking spaces.Nothing major that comes out of there pockets. Just a place to recline if I feel the need to. I'm just so afraid to look for something because if someone says no, I feel that will add to the rejection from the world I already feel.

I know there are kind and understanding people out there, but I have trouble believing that. AND i'm afraid of running into careless lunatics like that last woman while I'm trying to find help.

I have thought about going to a Disabled person's program and asking for help. I have been to a support group run by them once, and they were very nice. I thought maybe they could represent me and explain to someone my conditions. I see they get people jobs that have certain conditions that the employer is willing to accommodate for, so I figure maybe they could do the same for me with a volunteer situation. But again I am afraid..I am afraid if they say no I will feel that rejection from the world. I know I have a disability but because I am not mentally impaired I fear that I will not be treated with the same rights. It's kind of like, because I look and seem normal I feel afraid that they wont' see me as disabled and feel that I should be able to do these things on my own. And I'm not doing so well on my own. It would really help to have someone behind me.Sort of an advocate.

I did call this place and leave a message, but they haven't called me back as of yet..And I guess I'm afraid if they do call..What do I say? How do I ask for help? How do I know what I'm untitled to as far as their help? And most important, how do I not get crushed if I wind up talking to someone that's not very helpful or concerned about me or worst, another idiot like the last time I tried to get help.

Well, I'd appreciate any advice.

If anyone has been in a similar situation..or has gotten help on the job. Or if anyone's ever felt shunned form the world of "the Normals", I"d appreciate your advice.

Susan

Asking for help is the hardest part. I'm looking both for volunteer work and/or paying job right now. Sometimes people are helpful, sometimes I'm treated like I'm trying to scam the system (why would someone applying for a job be a scammer? I don't get that). Sometimes people don't call back, or they pass the buck by giving you someone else's number, who gives you another number, etc.

The Disabled person's program is a good idea. Heck, I'd contact any Disability Awareness/Assistance type places and see if they could use. Also, talk to your therapist. She might can use your help, or know of a place that does.

Doing my best to send good thoughts and energy to you. I'm not very spiritual, but I'm trying and I hope at least some of it gets to you.

Oh I already filed a grievance against the guy. Did that back in July I think. I'm also going to see if I can get any of my money back from him. I'm just sad b/c I'm pretty sure his incompetence is going to mean my ex walks away with everything. I've called a Legal Aid Resource, just in case any of this can be salvaged, but I have yet to hear back from them.

Ok, I own a few books written by people with chronic illnesses telling me how to deal with mine. There's helpful, up to a point. Problem is, these authors can all work full-time jobs and usually have very successful careers. So reading them usually makes me feel less inspired and more like I'm a failure. I mean, they often have a husband or ton of family support, health insurance, and still lead pretty active lives. While I want these people's success stories to become mine, and I'm nowhere near there yet. While I'm glad these people managed to somehow graduate from college and start a career spending every other week in the hospital, life doesn't work that way for me. I'm just not that strong.

I need a book for someone who's struggling on their own, unable to work, and having to deal with the depression/boredom that comes from lying around in bed all day and getting winded from a short lap around the house. Someone who can give advice about dealing with Medicaid and Social Security officials, and provide tips on surviving on less than $700 a month? Is there anything out there like that? I have doubts that there are, because people in my situation probably aren't up to writing books. But if anyone can recommend something, I'd appreciate it.

And the hits just keep on coming....

Got a bill from lawyer. He has spent every penny of my retainer, despite not having accomplished the first thing for me. All I've been asking for since December is temporary alimony, and he's never done a thing to get me that. Now I have no way to pay him off, no way to pay for a new lawyer, no way to pay for the required mediation, and no way to get up there to make my court date in October. I'm gonna call Legal Aid first thing tomorrow, but I'm pretty sure I'm totally ******.

What is 'immune mediated' dysautonomia? I've not heard that term before.

Thanks guys, I needed that.

Lack of support is a big problem for me, now that I'm living with my folks I'm out in the middle of nowhere and can't drive. My parents work up to 14 hour days, so I don't even get to see them. I'm really struggling with the isolation, and I think it's the solitude that has me suddenly feeling extra whiny about my divorce. I need more friends in my life, obviously, and so I'm missing my best friend a whole lot, even if he wasn't really my best friend. And when I have these blocks where I'm not feeling well and have nothing to do and no one to talk to I tend to focus on the past and on how 'unfair' life has been (or in my case, I feel like it's been extra unfair, although logically I know others have had it far worse). I know I have to stop doing that, and I am seeing a therapist as well as a psychiatrist, but so far I can't seem to pull myself out of this black hole I've been sucked into. I regret my past, and worry about my future, but can't seem to manage to stay in the present. I sure hope I break out of this soon. The next couple of months will make a big difference in what direction my life takes, so I really can't afford to screw up just b/c I'm feeling sorry for myself.

Again, thanks for listening.

Thanks guys. I've moved in with my parents and am on both SSI and Medicaid now, but I'm just so angry b/c I shouldn't have to be. My ex said he'd pay maintenance but skipped out on it all and my lawyer just let him. That's what makes me so mad! I know it's just money, and I shouldn't care so much about it, but w/o that money I eventually had to give up everything. He's the one who committed the wrong yet I'm the one that's having to pay. I LOVED living in Seattle. I loved the little condo we owned. I loved the few friends I made (not many, but that's my fault for depending too much on my husband when I got sick). I loved the pets I had. I hate that he gets to keep all that while I had to give up everything. And I hate myself for being too sick to stand up for myself. I basically let him walk all over me, because I was too busy trying and failing to fend for myself. And I let the lawyer walk all over me for the same reason. All I wanted to do was focus on figuring out how the **** I was gonna take care of myself all by myself, I didn't want to have to deal with the nastiness of a divorce, so I feel like I'm at fault for letting myself get screwed over.

I know life's not fair, but having your best friend and the person you loved above all others take away everything you care about and intentionally make you sicker so he can get what he wants is a kind of unfairness that I didn't believe existed until now.

Thanks for all the positive thoughts.

I'm really having a rough time right now with my divorce. My husband ignores me completely (not that I'm complaining) and my lawyer couldn't care less what happens to me. I have NO money and no way of earning any. It's really starting to affect my self-esteem, and when my POTS symptoms flare up I get totally overwhelmed. I know I'm far from the first person on here to get suddenly dumped, either directly or indirectly, because of their disability, and would love to hear some words of encouragement or suggestions on how to cope with this not-quite-yet-divorced stage. Anything to keep the near constant panic pushed back a bit. I'm SO tired of being so scared all the time and I know these feelings of desperation are hindering my health, but I can't seem to find any solid ground to stand on. I never get more than a couple of weeks before the rug is pulled out from under me, either because of my illness or because of some snag in the divorce process. I want to heal and move on and find some stability, but I can't even being dealing with the emotional upheaval of being discarded like that b/c I'm still under attack from the man I used to love.

Thanks for listening to my rant.

I went to the dr. and she said she would have to do some "research" before she perscribed this. anything i can show her to sway her opinion? i even printed out some of the posts on here and showed her how much it helped everyone. im at a loss now.

Because of all the scrutiny given to ADD meds lately, GP's are scared to write scripts for them. If you want to try Ritalin I suggest seeing a psychiatrist or other specialist.

I'm just now starting on Ritalin. So far so good. Took Adderall in the past, but it made me want to die after a while. Hoping the same won't happen with the Ritalin, especially since Midodrine may be going away soon.

I think the link I posted was from Amazon, so it would be returnable.

Thanks for the Bing suggestion l4a, I'll look into that.