Two Questions

[Rachel]

Hello everyone,

Sorry for posting so many questions, but I still have so many unanswered ones! I don't have a POTS specialist to go to here in AK, so I have to find all of my answers on the internet. When I was diagnosed with POTS so little was known that the doctors weren't able to help much. Many of the symptoms I had weren't known to be symptoms of POTS. I only realized this past fall that my nausea is due to POTS.

My first question is about nausea. Many of you have mentioned that you suffer from it. I was just wondering what POTS nausea is like. I many times get sick to my stomach in the evenings. And sometimes I wake up feeling very nauseous, but eventually it goes away. But can POTS nausea ever cause throwing up? Sometimes I get this weird "thing" where I wake up (always around 5-7am) and throw up every 10 or 20 minutes for a couple of hours. Then I go back to sleep, wake up a couple hours later like nothing ever happened. This has gone on for years, but the doctors never knew why. So I was just wondering if that sounds like it is related to POTS, or if it's something totally different.

Hope I'm not making you nauseous reading this!

My other question is about Social Security Disability benefits. I am not able to work at all because my symptoms are so severe. Many days I can't even take care of myself, much less cook or clean the house. So I applied for Social Security Disability, but after a several month process was denied because I'm "not disabled." Does anyone have any experience with this? Is it difficult to get disability benefits due to POTS? Do I just need to keep applying every few months?

Sorry for another long post full of questions! But thanks for your help,

Rachel

[Dawg Tired]

The nausea sounds like what I go through. Every time I was pregnant I had severe nausea and it was pretty much the same.

SSDI - it took me two years, many denials and I had to go to a hearing but I got approved. One problem it sounds like you are having is a lack of a doctor. Who is your medical insurance through? I was working for a medical insurance company when I got sick and we carried many groups in Alaska. It takes a lot of medical documentation to get the SSDI and you will probably have to get a lawyer but KEEP PURSUING IT!!!! Don't give up or you will have to start over at a later time and it will cost you time and money!! I was approved at the end of October 2004. I had applied in Sept 2002. It took a year for an initial denial. KEEP TRYING! I think that the vast majority of us who apply and pursue it are successful. I don't think this is unique to POTS - my husband has a head injury due to a plane crash and he had just as much trouble getting it as I did. It's just the government...

[steph37822]

oops

[opus88]

I've never had this kind of nausea - mine does not include vomiting (although sometimes I feel like it would pass more quickly if I could).

A very inexpensive thing to try is a homeopathic remedy called Nux Vomica. One dose of this (I rarely need more) works like magic for me with any stomach-related trouble.

I don't know if it would help you or not. It's only about $7 where I live, so even if it doesn't work for your situation, you aren't out much money - and it won't necessarily be wasted, since your hubby can use it if he ever has an upset stomach.

[Guest tearose]

Hello Rachel, welcome to dinet!

Nausea for me seems to come and go in waves. I seem to get nausea after eating a large or heavy meal. After I've been sick I have a hard time digesting food and it can sit and ferment in my stomach. I have done behavior modification to keep it at bay. I eat many smaller meals instead of big meals and have learned what mixes better in my stomach to help with digestion.

SSDI is a very long process and I still am waiting for the final determination in my case. I went through the first two "rounds" doing it all myself with some minor help from family. As is typical for many, I was denied. For the hearing I needed assistance, I was worn out but knew I could not work anymore! I gave all my files to an attorney to help me, it was the smartest thing to do. I suggest you get an attorney to help you. I started this process years ago and am hoping to hear in the next few weeks.

best regards, tearose

[yogini]

Hi Rachel and welcome to the board.

Nausea has been a big problem for me sometimes. It goes from pretty mild on some days, to moderate, to a few times where I have woken up and spent the morning throwing up like you. I definitely think it's related to POTS, because I didn't have it before. There were a few months in there where it was happening every day, but now it's just some days. For me it's usually in the mornings, but sometimes in the evenings. I think I get mine when I am getting my period, when I overdo it and/or when my BP goes too high. I used to take florinef which I think made things worse. I don't really have any ideas on how to cope with it. I just sip on some ginger ale and hope it passes...

Feel better,

Rita

[Jersey Girl]

Hi Rachel, I get nauseous when my blood pressure drops but not the way you described with vomiting. I would suppose that if your blood pressure drops suddenly, you might respond physiologically by vomiting.

I also recently spoke with an attorney who specializes in social security disability insurance (SSDI) denials to handle my appeal.

You might want to consider trying to schedule an appointment with an autonomic specialist now so you could make plans to travel. It takes a few months or even longer sometimes to get in. The weather would be better for traveling then. Martha

[Rachel]

Thank you for all of your answers.

Well, I guess all of my nausea IS related to POTS. I've always wondered why I sometimes throw up so much in the mornings. There were times when it would happen 10 days out of the month. But now it is usually just once or twice a year.

Steph, I'm the same as you - when I throw up it's usually just acid from my stomach. I have found that drinking a few sips of Coke helps. It doesn't make me stop throwing up, but it dilutes the acid a bit and helps to take the burn away.

Wow, I didn't realize that it was so very difficult to get SSDI. You'd think that if someone can't stand for more than 2 minutes, can't prepare their own meals, can't work, etc. that it would be easy to qualify. Guess not! Well, I'll keep trying. Thanks for the encouragement.

Rachel

[Dawg Tired]

Rachel, I also use the phenergan. I have it in the injectible vials, suppositories and pills. I very rarely use the injectible but my PCP doesn't want me to be stuck in ER with nobody taking me serious and not treating me. But the suppositories are invaluable on the "dry heave days". YUCK!

[Jaime]

I get severe nausea too. Sometimes it gets so bad that I can't even move without throwing up. I use 250 mg 4 times per day of Ginger capsules and enteric coated peppermint oil. This are inexpensive and they work extremely well. I chose these because I am so sensitive to medications that I wanted to try something homeopathic. If you get the ginger, get it in a capsule (not enteric coated, but just a regular capsule). I can't remember how much I paid, but I remember it wasn't much. I hope this helps.

Jaime

[blackwolf]

rachel,

never worry about long questions, if we can't get through them now, we'll come back when we can.

nausea-boy, i could write a book on it. favorite home remedies, peppermint candies(hard ones) try sucking on it for just a few minutes and see if it helps. also try ginger tablets, ginger ale, ice chips that have been soaking in ginger ale. I can only handle two otcs, compazine and one i get IV style.

per ssdi-another book, records, appointments, tests, denial 1, denial 2, more tests, a pt and oc evaluation, court and i'm here ( that's times 2 for me and my hubby-for other reasons) and in my case, lost house, land, blah, blah..... for goodness sake, NEVER GIVE UP!!!!!!!

blackwolf

[Rachel]

It's me again, and I have a couple more questions about SSDI. If I keep applying and am approved, say, the 4th time, does the back pay go all the way back to the very first time I applied? Also, is it hard to get an attorney? If they only work for a cut of my back pay then it won't be very much at this point. But if the back pay does indeed go back to the very first time you apply then maybe an attorney would be willing to take my case a little ways down the road.

Rachel

[steph37822]

oops

[dream02]

Hi Rachel,

I can really sympathize with you. I wouldn't get through most days without phenegran. It's a good thing I can take it since I'm allergic to both compazine and regland. Peppermint candy does help me some also depending on how bad it is. Mine doesn't hit at any particular time but seems based on my pain level.

I've just started on the SSI process myself. I missed my first appt due to being in the hospital and received a denial letter although the hospital called and set me up with another appt. So now I wonder if that's my 1st denial and I only have one more before a trial and also I was told if SSI denies me I'd qualify for Medicaid. On a good note my son and I had our taxes done today and the people there, who have been wonderful to my son, hooked us up with good local people to help us with our issues, his being a divorce and mine being a good SSI lawyer. It pays to know people who know people.

I wish you and I and everyone else here going through the process good luck as well all know this disease should be on the disability list.

Denise

[Rachel]

What kind of documentation do I need to be collecting for the whole SSDI process? Social Security doesn't really tell you what they want. They say that if they need more information or tests, they'll just ask. Well, they didn't. Would it be helpful to keep a journal of my daily activities and how I feel each day? Do I need to keep having tests to prove that I'm not getting better? I figured I'd better ask all of you who have been through this. You'll probably give me a better answer than I'll hear from the Social Security Department.

Thanks,

Rachel

[Miriam Poorman-Knox]

What kind of documentation do I need to be collecting for the whole SSDI process?  Social Security doesn't really tell you what they want.  They say that if they need more information or tests, they'll just ask.  Well, they didn't.  Would it be helpful to keep a journal of my daily activities and how I feel each day?  Do I need to keep having tests to prove that I'm not getting better?  I figured I'd better ask all of you who have been through this.  You'll probably give me a better answer than I'll hear from the Social Security Department. 

Thanks,

Rachel

<{POST_SNAPBACK}>

Make sure that EVERY TIME you go to the doc he documents your symptoms and problems. And if he will put his opinion on your working. I do have a video that is meant for docs on ssdi on how to get the paperwork dome and I hope approved. Will watch and report. I too have been denied. Have a lawyer and because of the backup they sent me papers to have filled out by my docs to give to the judge and let the judge decide. Just got back from Mayo will wait and attach that also. Miriam

[Dawg Tired]

I have 3 years worth of journals. No one asked for them but the attorney told me they might need them; but my doctors did such a good job that I didn't need them.

[steph37822]

My best advice for you is to get your hands on anything and everything you've got from doctors. You have probably signed forms from soc. sec. giving them permission to collect from them, but I highly suggest getting them for yourself, and give a copy to your lawyer as well.

They usually send a questionaire to your physicians, I also suggest that you ask your doctors to fill out the forms with you present. There are so many symptoms that we all have that sometimes our doctors don't know how to answer the questions, so in order for them to choose the right ones, it's easiest if you are there, and can actually show them how you are feeling.

You may get to a point where you feel like you're giving them too much, but I truly feel that if you have to give them stacks of paper to prove how this has debilitated you, and diminished your quality of life, then give them everything!

I know my lawyer has about a 4-5 inch folder for all the info I got him, but I was approved at my trial, so I'm sure glad i was proactive in the process. If they don't ask, you really need to do the work yourself. I cannot stress enough that you need take this stuff into your hands, so please don't wait on them, I think it will only hurt you.

Take Care, don't hesitate to ask more questions. I just wanted to let you know that I had a really tough time with the whole ordeal, and quite honestly still do, even though I've had it for 3 years and only used it for about one total. But while I was going through the process I used to get calls for interviews, these people truly made me feel that because I could shower and keep myself clean, that I could live in an apartment, perform fairly mundane day to day tasks--getting the mail, driving, etc. and even have a boyfriend that I didn't deserve SSDI. So don't be afraid to vent, and ask for help if you need it. Good Luck, take care.

-Steph

[Rachel]

Hi all,

Thanks for the advice. I still need more...

I am in the process of appealing the decision made on my ssdi. So I'm going to have to start looking for an attorney. Have any of you used attorneys through the free legal services? Is it better to get an attorney that you pay? I'm just afraid that I'm not going to be able to get one that will work for a percentage of my back pay since it will be so little. I'm only 24 and have never been able to work full time, so a portion of my back pay won't be all that much. So if the free attorneys do a good job, that would be an easier route to go. Let me know your opinion.

Also, how much current information am I going to need to be approved? I've mentioned before that I don't have a POTS specialist. And all of my tests are old. I tried numerous medications and treatments 8 years ago, but none of them worked. So I don't really have much recent documentation except that I'm saying my POTS is getting worse.

My doctor was supposed to call me before she filled out the form for ssdi. But she didn't, so I think that at least 3/4 of my symptoms never even made it to the form. That made me really mad. Because my denial was based on her report. So I'm not sure how the appeal will go when my doctors office didn't even give a complete report to begin with. Makes me look like I'm not really telling the truth. Sorry, I'm venting. I'll stop!

I'm grateful for any more info you can give. This ssdi stuff is all new to me and I don't know what to do!

Rachel

[blackwolf]

it sounds bad, but i would suggest seeing a couple differnet doc if you can. getting any and all the documentation you can of your symptoms. my hubby used a referal from a free legal service and only lost a small amount (about 1/4 of the normal fees). so at least look them up and see if they at least have an idea of who to contact. also, i would suggest an occupational eval, if you can get it. i also had a pt eval, lots of test as to my ability to function around the house, etc. check and see if your local job servie( if you have one) has an oc/pt evauator(s). in my case, she even came to my house for about half the tests. mine even went to court with me and said that to send me to work, anywhere, was to dangerous and 3 weeks later, i was approved.

never give up and keep fighting! the system is way goof ed up to understand.

good luck

blackwolf