Sick and tired...

[wsc]

As much as I have been trying to learn about POTS and NCS, I still don't feel like I am really grasping it. I feel like it doesn't seem like a big deal to anyone, or that it isn't a REAL diagnosis. Or atleast that's how people treat me. I don't know, I just feel AWFUL, and I want so badly for my husband and my family to recognize that. I guess since I was diagnosed, I assumed people would ask me how I've been feeling or something, but noones even so much as brought it up. It's really frustrating. I guess I just want my husband to understand what is going on and that it's NOT in my head.

Well, anyway - since I'm here, I have a few questions: Is Pots and/or NCS curable? Is anyone getting better? Is it a progressive disease? should I anticipate feeling worse? What about disability - is anyone getting disability for POTS? I guess why I ask is because I'm wondering how seriously the world takes POTS. Is it recognized as a disabling disease? I mean, personally, i feel worthless. I feel like i can't do ANYTHING. I work full time, and when I get home - i literally have nothing left. I'm wiped out. I'm just so tired.... I jsut want to feel human again. I want someone to say - THIS is whats wrong, THIS is why, and THIS is going to fix it. By the way, are you born with POTS or NCS? Or does it just develop over time? I wonder how and when I got POTS. And how do I get rid of it?!?! I know - you are all wondering that...*sigh* I'm just really worn out, and emotionally, I feel like I'm good for NOTHING. O

m just too tired.....

[amy777]

I totally understand how you feel. I too am new to this. Read my posting "trying to get a handle on this" I have good days and bad. Today a good day so far but last night was just awful. My husband doen't understand any of this. His mom has MS and he understands that but he still thinks all this is in my head. Those out there who have dealt with this for awhile correct me if I'm wrong but I don't thinkyou just get over POTS. You just learn to live with it. I wish there were a support group in my area that is what I need right now. Are you on any meds?? I am on a beta blocker and it seems to help. I have also been taking the salt tabs and they really have made a difference. I do notice I cannot handle stress AT ALL!!! I will have a panic attack at the slighest thing. I really try to stay busy and ignore the symptoms the best I can. Don't know if I have helped at all but if you would like I can give you my email address and we can email since were both new to this???

[MomtoGiuliana]

This is a hard condition to characterize succintly, nor is it well-known. So at least 2 strikes against us when it comes to helping others understand what is wrong with us. Some people only ever have mild symptoms and need no medications, others are terribly disabled. Medications help many people to get better, as does time. This is not a progressive condition. Most people improve over time after a bad bout with it, but recovery is slow and patience is needed by both the patient and her or his caregivers/loved ones. It's true what Amy has said--that many people don't "get over" POTS--but for most people, the symptoms abate eventually. I was so sick in 2002/2003 that I was almost completely disabled. I was unable to leave my home, essentially, escept for doctors' appointments. I could not stand up. After diagnosis and several months on treatment (beta blocker and SSRI) I improved. Today I am not symptom-free--but my symptoms are extremely mild most of the time, and do not interfere with anything I want to do--even exercise. I do not have the endurance I used to have and I have to drink more fluids and take salt to feel my best, but other than that, I am well.

Many on this forum have gotten disability. I was awarded several months of disability by my employer's disability insurance. It is not always easy since a lot of documentation is needed and the condition is poorly understood, and like I said, so variable in intensity.

Keep asking questions and seeking all the support you need. This is a tough condition to manage--BUT, your situation is very likely to improve over time.

Katherine

[wsc]

Amy777~ I'm on toprol right now. I'm not sure if it's helping yet....every day is different - you know. I haven't been taking salt tabs.... I'm just trying to drink a lot of fluids and get to the gym. I haven't been sleeping well, and spend much of my night in a lot of pain.... anyway, you should give me your e-mail. Where are you from?

And Katherine - I really appreciate your input. I guess I can start being hopeful that with medication, and the right care, I can look forward to feeling something in the realm of normalcy again someday. I can't WAIT. I want to have another baby so bad, but I am afraid I wouldn't have the energy for an infant anymore. I just turned 24 on Friday. i feel 90. It's so discouraging....

[MomtoGiuliana]

wsc--are you a new mom? Just wondering b/c I am curious if this came up for you post-partum. I am 36 now--34 when my (first) daughter was born. I first started to have bad POTS symptoms during pregnancy--they got worse post-partum, which is when I was finally diagnosed. I have heard that pregnancy and post-partum POTS CAN improve with subsequent pregnancies--but I think not enough is yet known on this. For me the combination of my age and having such a hard time with POTS and also a very rough delivery has made me decide not to have any more children. Sometimes I feel sad about this. And it is hard to see friends with multiple children at times--as much as I try to talk myself out of feeling that way. I guess the main thing is that I would ideally like my daughter to have a sibling. But, we may adopt or do foster care, which I strongly feel is the right thing to do for a number of reasons--but most importantly, rather than possibly compromise my health.

Anyway, I am describing my personal situation and not saying any of this to discourage you. Particularly if you developed this post-partum--you will be feeling much better eventually. And POTS does not stop someone from being able to have a healthy pregnancy. There are lots of moms of multiple children on this forum. It is challenging to be a mom when you are experiencing particularly bad POTS symptoms, however. We've had lots of discussions on this topic on this forum--so many, we probably need to have a separate forum for Moms with POTS.

take care,

Katherine

[wsc]

Katherine --

my daughter is actually, believe it or not, FIVE. (*gasp!*) BUT I had severe Preeclampsia with her, kidney failure and swelling in my brain, etc. I have NEVER felt good since so I definately think that I developed POTS and NCS and fibromyalgia post partum. You are lucky you were diagnosed so quickly. I was diagnosed with Fibro abour two years ago, but just diagnosed with POTS and NCS within the last month. I still don't understand how I have BOTH....I won't get into everything, but you can (if you want) read my first post "New here and I know Nothing"... Like you, I think of adoption and foster parenting frequently and do believe that is a very wonderful and exciting option for us, but i am not just afraid of HAVING a baby. I'm worried about caring for one. I'm just so tired....I'm so glad there are people here who understand that. I appreciate you taking the time to answer all of my questions. Thanks.

[MomtoGiuliana]

I had pregnancy-induced hypertension at the very end of my pregnancy and I had a placental abruption with huge loss of blood during labor. So, it sounds like we both had a lot of trauma with birth associated with blood pressure. There must be a connection with that and POTS. Of course the risks in general are higher too at older and younger ages.

It does sound like your condition may be linked to your pregnancy. Hopefully now that you are finally diagnosed you will see a good amount of improvement with treatment.

I understand what you are saying about the energy to care for another child. I think many of us moms or moms-to-be evaluate this question very seriously when we have POTS or another version of dysautonomia. I hope you will start to feel better soon.

Katherine

[ramakentesh]

I remember when i was that bad. I had slight symptoms for ages, but nothing that was really bad until it suddenly came on afdter a period of very heavy exercise and a bad cold. I was so spaced out that i didnt know what was going on - tired, over emotional, anxious, so incredibly dizzy, weak, pale, lost heaps of weight, got heaps of vitreous floaters in my eyes, would tremble after the slightest exertion, tachycardia if i even lifted my hands, couldnt handle alcohol or caffiene, was constantly thirsty, restless, couldnt focus and just felt crap.

I didnt even work out what was going on until i had already started to very gradually improve - after nine months i started to feel better. Now days - its been 11 months and i can walk every night and pretty much do most of what i used to be able to.

My eyes have never been the same though, and im still thirsty and pissing every half an hour - and i still get very dizzy in the mornings...

Although i fear a relapse, i have definately improved through just time really - i cant put my finger on any other reason.

[Gena]

Hi WSC,

From what I've read and what I've been told by doctors, POTS symptoms can definitely get better. I came down with this in June/July of this summer and have already improved remarkably. (I'm going through a little flare up the past few days due to stress at work though). But overall, I can function fairly normally without any meds...I still work and exercise. My sleep patterns are erratic, and my exercise tolerance isn't what it used to be, and I still have anxiety about situations that I wouldn't normally have, but I am grateful for the recovery I've made so far, but I can't predict the future. I just hope for the best!

POTS works similarly in all of us in many ways but also very different. I think of POTs as a snowflake == in that it's made of snow, but no two are alike, so everyone has their own unique version of this syndrome. Oh, goody! Which makes it harder to determine exact causes and best methods of treatment.

I completely understand about wanting definite answers as to why, how, when, etc.

I pray that we'll get some new insight and research into POTs soon. But in the mean time I will continue to do my own research and come running to this forum when I need support! It does get exhausting in so many ways and it's frustrating when our families don't understand. My husband says he understands, but I don't think anyone can really understand withouth experiencing what we go through on a daily basis.

[briarrose]

I know exactly how you feel. I had a million questions when I first got sick and was grateful for this forum and the NDRF.

Unfortunately there are very few doctors that know much about Dysautonomia/POTS/NCS/etc... It is hard to find people with understanding to this illness. There is no known cure for this illness, just simple preventative measures and medications to help treat the symptoms as they develop or persist.

This illness is a big deal to all of us because we have a true understanding of how disabling it is. How frustrating it is to find help and how hard we have to struggle to do simple things in our lives.

There hasn't been enough research on this illness yet.

There are people that have gotten better and I've heard that it usually depends on what brought your illness on. I have heard that if it was brought on by a virus that you can usually expect to be better in 2-3 years.

(Is it progressive?) Well, it depends on what you mean. If you have complete autonomic failure, yes. POTS in itself has at least 60 documented/recognized symptoms. If you're asking if it goes beyond tachycardia, the answer would most likely be yes.

No one can answer whether or not you'll get worse.

Some people get disability but it's a long road to hoe for any illness, the government doesn't like to hand over money But yes, POTS is now recognized.

I know how you feel, going to work and being exhausted. I've been doing it for 3 years. There have been many months that I was taking it day to day because I wasn't sure if I could take one more shift at work, I was always so exhausted. I would sleep on my lunch break. I still get home, go to bed and sleep until my next shift, what a life.

POTS can be inherited or come on later in life. There is a forum for kids that have POTS.

There is a book that you should download from the NDRF and it's free. It will answer many of your questions.

http://www.ndrf.org/Reference.htm