I'm New And Need Help!

[carolyn82960]

Hi, my name is Carolyn and I live in Fort Gratiot, MI. I was diagnosed with POTS in Virginia in 2001 after many years of being misdiagnosed with anxiety, panic, depression, etc. I have terrible symptoms - extreme fatigue, numb hands, excessive sweating, insomnia (at night only - I could sleep all day). I feel like I'm going to faint all of the time. I can barely stand up sometimes. I have tried all of the medications that the doctors have recommended - Midodrine, Florinef, Beta Blockers, Anti-Depression/Anxiety meds. I cannot tolerate any of them. They all make me feel worse than POTS! The only thing that barely works is Ritalin to make it through the day and Xanax to make it through the night. I am single and have to work full-time - both for the pay and the medical insurance. I feel like I'm not going to make it another week. I sleep all weekend just to gear up for the week ahead. I have zero quality of life. I moved back to Michigan from Virginia to be closer to my family. I just saw Dr. Felix Rogers (listed on POTS Place) for the first time last Friday. He was very understanding of my symptoms and prescribed yet another beta blocker, which I had to stop taking after two days. It made me feel like I was in a coma - my arms and legs turned to rubber. My question is - does anyone ever qualify for disability due to POTS? I honestly feel like I can't work another day, yet I have to. I can't just quit - I would be on the streets with no medical insurance. Does anyone have any suggestions? I have read some of your posts and feel like I am listening to a group of my identical twins. It's great to know that I'm not crazy and there are others out there who feel like I do. POTS is worse than cancer in my opinion. You could fight that and either win or lose - at least there would be a resolution and closure. Thanks for listening to me. Your friend, Carolyn

[Ernie]

Hi Carolyn,

Welcome to this Forum.

Some of us have been able to get a disability pension. It takes about 2-3 years to get it and usually you have to appeal 1-2. Some were not able to get the pension because of administrative loops.

I agree with you that POTS is worse than cancer. At least that's my feeling.

Ernie

[morgan617]

Hi Carolyn and welcome to the site. Unfortunately it is very hard to get disability for POTS itself, it usually has to be some underlying problem. I think I got mine because of a severe inner ear disorder. Is the doctor willing to work with you on this? I know how you feel, I was working one day and then all done. It is essential that if you want to get ssdi, that you apply as soon as possible and realize you can't work during that time, and it takes six months. Do you have people to help you through this time. We had to go into debt up to our eyeballs. I am not trying to discourage you at all, although it sounds like it. It is just the reality of the situation. We had to move into a much smaller older house, run up credit cards, get rid of our beloved car and buy a much cheaper one, and we will be paying off these bills for a long time. To me it was worth it, and I had lots of support. If you have a good support system, and can deal with the roller coaster of trying to get it, then go for it. There just comes a point for many of us, that we just have to say "enough, I can't do it anymore." If you've reached that point, then get those buns in gear and start applying. Good luck and know many people will be here for you emotionally and many can answer ssdi questions. Some will tell you to get a lawyer right away, but I never had too, so that is a decision you should make with your doctor, he should know how strong your case is. morgan

[carolyn82960]

Hey Morgan...I'm not sure if this is how to reply to you, but here goes. Thanks for your comments. I was very intrigued with what you said about your inner ear problem, because I am legally deaf in my left ear. I have to wear a hearing aid in that ear. My right ear is fine. Regarding my support system, I only have my parents and they can't pay for me. They are retired and on a fixed income. I could stay with them, of course, but I would have no money or health insurance. I am waiting for Dr. Rogers to call me today and I am going to ask him my options. He knows how dire my situation is. Thanks again for your comments/advice.

[carolyn82960]

Ernie...thanks for your comments. I swear, if I could check myself into a mental hospital, I would. No one but us can understand this disorder. I don't know if I have it in me to fight that hard for disability, yet I feel I cannot work anymore. I'm at a dead end. My thoughts and prayers are with you too.

Carolyn

[Ernie]

Hi,

It's a hard decision to make to apply for disability because it involves more than money. It's also our social identity. We have to learn not to identify ourselves by the job or our profession but with our inner self. If necessary, in time you will make your way through.

Ernie

[KathyP]

Hi Carolyn;

Welcome to the site. I am sorry to hear about what you are going through. I don't have POTS but I do have IST which is Inappropriate Sinus Tachycardia. This is where my heart races and I have palpitations when I am on my feet for long periods of time. I also have Vasovagal Depressor Syndrome. This is where my blood pressure drops after being on my feet for a long period of time. I have been experiencing severe anxiety attacks for the past 10 years but have only been diagnosed with dysautonomia within the past 6 months.

My doctor tried everything for my symptoms, being careful since I have asthma and I am very sensitive to medications also. He finally put me on beta-blocker one week ago. It is helping me so far. My dr. told me that I need to give it 2 weeks to see if it will work properly.

The first 2-3 days are unbearable. I know exactly what you are talking about with the fatigue, extreme tiredness and your arms and legs feeling like rubber. You feel like you can't function at all. BUT that will pass!!!!! You have to give it a chance to work for you. Give yourself a 3 day weekend to get through the worst of it. I was very hesitant on trying it. But now that the worst is over I am concentrating on letting the medication do its job. I am terrified that I will have an asthma attack, but I haven't so far. Let your doctor help you and at least try with the beta-blocker. After your body gets used to it you may be very glad you did.

I will mention to you that the one thing my doctor did was give me Ativan to take for the first 2 weeks on the medicine. It helps ease the side effects tremendously. I have noticed that my heart has slowed down considerably.

If your doctor thought that the beta-blockers would be bad for you he wouldn't have had you try them. What dose did you start on. I am on 25 mg and it seems to be enough for me right now. I hope it works for you!! Keep in touch!

Take care!!

KathyP

[sunisshining]

hi carolyn,

sorry you are feeling so sick. it's not quite the same, but i remember when i had to be put on independent study my last half of senior year. the decision was kind of made for me by my parents and doctors, but i couldn't really disagree because i was so weak and sick. since i don't know about disability stuff, i can't really help that much, but i do know that where are you going to get if you keep on pushing on the gas when there's no gas in the tank? it's going to damage the transmission (or engine...i forgot what my dad told me). So please do take care of yourself. I feel like you need to be able to go at a tolerable speed/pace every day instead of trying to fly during the week and then crashing and burning. about no quality of life - work and sleep is what you mean, right? been there, done that for school, but not work, but i feel for you!

you're in my prayers!

please keep us updated!

hugs, love, and prayers,

sun

[morgan617]

Carolyn, if being deaf in one ear causes disruption in your career or life choices, it can help with disability. Deafness and hearing loss, if profound are listed on the "book" of disabilities. Disability is a social stigma as others have said, but sometimes we just have to get over that and realize if others have a problem with ithttp://www.ssa.gov/disability/professionals/bluebook/listing-impairments.htm, it's their problem, not yours. I have a site that lists all disabilities that ssdi lists and as you can see I'm a total dork on the computer! It's up above there in the middle of a sentence. Go to the adult listings and see if anything fits, like your hearing loss. Like I said before, this is a very difficult process and hopefully your parents can support you through this. If you have no income, the state will provide you with assistance and I believe medicaid. For some of us that wasn't possible as I am married and my husband made too much and we had health insurance, but there are programs for people who are not dependents and have no other source of income or insurance. So whatever your parents made, as long as you are over 21, wouldn't count. So look over the book and talk to your doctor. Good luck. Sorry it's in the middle of the sentence. dorkville. morgan

[Sunfish]

Carolyn-

Just wanted to say welcome; sorry you have to be here but glad you found the site. Regarding disability, others have already said most of what I've heard re: social security disability, but I thought I'd add in that I am currently on long term disability through my employer & that was obtained without too much hassle. Or rather any of the hassle had nothing to do with the medical specifics. I know that many don't have this benefit & I've only been on it for the past few months (with the hope that I'll be off of it in the not-too-distant future, i.e. to start grad school in the fall). I also have a lot of "extra' autonomic stuff going on - GI, bladder, neuropathy, etc. - but you know yourself best so I'd say make sure you have a supportive doctor & do what you need to do. Hang in there & good luck!

:-)melissa

[MomtoGiuliana]

Just wanted to add my welcome as well. I hope you can find some medications that will help. You said that you have been unable to tolerate any meds b/c they made you feel even worse. I just wanted to say that, while this is common for POTS patients to be extremely sensitive to meds, and often do best on very low doses, it also takes the body (POTS or not) time to adjust to some of these meds. During the adjustment period, symptoms can be worse. An SSRI worked eventually very very well for me. However, I went for nearly two months with the most debilitating symptoms, while my body adjusted to the SSRI. I would have stopped taking it, but my doctor insisted I should give it two months and ride out the bad symptoms to see if it would ultimately help. I did, and today I am quite functional (so far, as long as I stay on the ssri). I also had challenging adjustment to a beta blocker, but it ultimately helped. Anyway, I am not saying that I am at all certain that these meds would work for you, just pointing out that you do have to give meds a chance to see if they are going to ultimately help you, even though that unfortunately can mean feeling even worse for awhile.

I was able to get temporary disability (about 7 months) from my employer. Is that a possibility for you? That may be easier to get.

Hope things improve for you.

Katherine

[sonshine456]

Kathy, I'm curious what your dr's told you about being on a beta blocker when you have asthma. My docs don't even want to consider it with me because of my asthma. They've wanted me to be able to try it so badly but decided it wasn't worth the risk. I'm on a med that seems to helping some right now but I was just curious about what your experience had/has been with the beta blocker.