Recently Diagnosed With Pots And In Need Of Advice, Thanks

[bequich]

After 4 and 1/2 years of doctors telling me I was depressed, anxious, overtired, "it was all in my head," I finally got diagnosed with pots after a positive tilt table study.

That being said, it has been a bitter sweet diagnosis, I am so relieved and happy to know why I have been fainting, feeling exhausted ALL THE TIME, cant handle hot weather, takes me hours to be able to get up from bed in the morning, my whole body hurts, I get the worst palpitations, migraines, this horrible tension and pain in my neck and shoulders plus a ton of other symptoms. So I am so happy to know it "was not all in my head" but at the same time I am sad and worried that at 27 I have this illness, that already keeps me from fully enjoying my kids and being able to have a normal life.

It has been very tough 4+ years, and my body is just taking longer to react, fainting more often, have not been able to work for a year, have not driven in 4+ years, cant be outside for long, its been a lot.

My husband has had to deal with a lot and had to take a lot of the load its the worst feeling to see him working 60+ hours a week and taking care of the kids when he is home and he is so tired he can hardly move. I also suffered a small stroke 2 years ago that left my left side paralyzed for 3 months, I can move my left side but it is very weak. TO add to this we have a 10 month old baby on a feeding tube!!!!!!

I get up and take care of the kids as best as I can, it takes SOOOO much out of me to take each step, each step is a marathon for me, my house is a mess, I feel like soon even if I give it my all I wont be able to move it gets worse every day

sorry I am rambling I am just overwhelmed.

So questions:

How do you handle not being able to work and providing for your family?? financially we are drained!

Will I ever be able to drive?

How can I support my husband through this? Emotionally???

How do I tell people that even though I "look" good I am feeling horrible?

how do you take care of your kids?

HOw do you get groceries done?

what kind of help is out there?

how do you emotionally cope with all this symptoms on a daily basis?? How do you manage living in constant pain 24/7?

how do I talk to the doctor about disability? Will he think I am trying to just get a free ride??

thanks in advanced if you read any of this.

[jangle]

After 4 and 1/2 years of doctors telling me I was depressed, anxious, overtired, "it was all in my head," I finally got diagnosed with pots after a positive tilt table study.

That being said, it has been a bitter sweet diagnosis, I am so relieved and happy to know why I have been fainting, feeling exhausted ALL THE TIME, cant handle hot weather, takes me hours to be able to get up from bed in the morning, my whole body hurts, I get the worst palpitations, migraines, this horrible tension and pain in my neck and shoulders plus a ton of other symptoms. So I am so happy to know it "was not all in my head" but at the same time I am sad and worried that at 27 I have this illness, that already keeps me from fully enjoying my kids and being able to have a normal life.

It has been very tough 4+ years, and my body is just taking longer to react, fainting more often, have not been able to work for a year, have not driven in 4+ years, cant be outside for long, its been a lot.

My husband has had to deal with a lot and had to take a lot of the load its the worst feeling to see him working 60+ hours a week and taking care of the kids when he is home and he is so tired he can hardly move. I also suffered a small stroke 2 years ago that left my left side paralyzed for 3 months, I can move my left side but it is very weak. TO add to this we have a 10 month old baby on a feeding tube!!!!!!

I get up and take care of the kids as best as I can, it takes SOOOO much out of me to take each step, each step is a marathon for me, my house is a mess, I feel like soon even if I give it my all I wont be able to move it gets worse every day

sorry I am rambling I am just overwhelmed.

So questions:

How do you handle not being able to work and providing for your family?? financially we are drained!

Will I ever be able to drive?

How can I support my husband through this? Emotionally???

How do I tell people that even though I "look" good I am feeling horrible?

how do you take care of your kids?

HOw do you get groceries done?

what kind of help is out there?

how do you emotionally cope with all this symptoms on a daily basis?? How do you manage living in constant pain 24/7?

how do I talk to the doctor about disability? Will he think I am trying to just get a free ride??

thanks in advanced if you read any of this.

I can't really answer your questions as I'm not going through the same things you are (I will defer the answers to these specific questions to other members). It sounds like your POTS is on the severe side of the spectrum. Even though you got a diagnosis of POTS from your tilt table test, that is not enough if the symptoms are having this severe of effects on your life. There are currently some recognized subtypes of POTS and emerging subtypes of POTS being identified.

-Hyperadrenergic pots

-Ehler Danlos associated pots

-autoimmune pots

-deconditioning induced pots

-MCAD pots

-venuous malformation pots

-low vitamin D induced pots

-other connective tissue associated pots

-NET deficiency pots

and there are probably others I'm forgetting. There are centers for autonomic dysfunction that can test you for the specific cause of your pots, Vanderbilt or Dr. Grubb at the university of Toledo would probably be good people to go to if possible.

Coping strategies.

Well, for me I've found that exercise improves my symptoms, I started slowly and worked my way up to a more vigorous program. This would have to be something you would probably need to do under supervision if your symptoms are severe enough to limit your ability to stand for periods of time.

[bequich]

Thanks for your reply, I will research each one.

Traveling to see Dr. Grubb would be very difficult for me, my baby has special needs and it would be really hard.

Exercise is very difficult for me, I cant do much without fainting, September 13th is my appointment with specialist, hopefully he will have more answers.

I really appreciate your response.

Thanks

[HopeSprings]

Hi there. A lot of us struggle with the things you mentioned. I'll try to answer the best I can. I do have a question for you - did they determine the cause of your stroke? 27 is young to have a stroke and not a typical dysautonomia symptom.

How do you handle not being able to work and providing for your family?? financially we are drained! It has been very difficult on one income. I applied for disability and was denied the first time - waiting for response on my appeal. The other thing I did was ask my former employer for part time work from home and that provides extra money on occassion. Would you consider applying for disability?

Will I ever be able to drive? I would say until you get the fainting under a control, not a good idea. I only drive locally when I feel up to it. Maybe there will be a treatment that works for you and you'll be able to drive again.

How can I support my husband through this? Emotionally??? This is tough. My only thought is try to find ways to give him a break if he needs it. I think my husband gets overwhelmed by the stress of it all too. Maybe someone could help you with the kids for an afternoon or evening and he could do something fun or relaxing for himself.

How do I tell people that even though I "look" good I am feeling horrible? This is tough too. I've kind of given up on this. I have been sick for many years and only recently do I feel people have started to understand. Most of the time I don't really believe anyone gets it.

how do you take care of your kids? I just push through. It's uncomfortable, but I do the best I can. Of course there are things I can't do which makes me feel sad and guilty. My husband helps a lot too.

HOw do you get groceries done? It's draining, dizzying and exhausting, but I just push through and get it done. When things are really bad, my husband goes.

what kind of help is out there? Just keep seeking out Doctors until you find one who understands and wants to help.

how do you emotionally cope with all this symptoms on a daily basis?? How do you manage living in constant pain 24/7? Some days are better than others, so those better days give me the push to keep going. I've been at this for so long that I'm sort of used to it, although it's hard for me to ever accept. I'm hopeful that research is going to catch up and an answer will be found... or I'll finally meet a really smart Doctor!

how do I talk to the doctor about disability? Will he think I am trying to just get a free ride?? I think it depends on the Doctor. If you're dealing with someone familiar with how disabling dysautonomia can be, you shouldn't have this problem.

[arizona girl]

Hi, I agree with naomi, there is something more going on with you then just pots. With the stroke and your child being born with special needs, there is a possible genetic defect, that I just found out I have and might fit what you are describing. It is called MTHFR gene and a blood test for it along with other thrombotic labs would rule it in or out. Some of your symptoms also sound like some form of neuropathy which can be caused by autoimmune disease amongst other things.

If you can get a better diagnosis and treatment plan some of the of these overwhelming stresses may improve. So, sorry you are dealing with so much. You sound like you need additional services in your home. I know there are agencies that may help, maybe speak with your doctor and see if he/she can refer you. Your church is another good place that can help with services as well. A support group for parents of special needs children is another place to look.

Did your tilt also show your fainting or drop in blood pressure. If it did you don't have just pots, you have some form of syncope and you should have no problem getting disability. One member went to the disability hearing and fainted in front of the judge, who then promptly approved her disability. So don't feel guilty about getting it. Also beware there is a stale date to apply, make sure you do so sooner rather then later. Once you get it you will also qualify for assisted services which will go a long way to take some of the pressure off your husband.

When some tells me how good I look or I don't look sick. I say "yes that's my silver lining at least I don't look sick". Really though what is sick suppose to look like? Are you suppose to get hit with an ugly stick to prove your sick. I also depending on ther person, will say, well you know many serious illness's are not visable, you can have cancer and not look sick until you start chemo. So, if I can one by one get someones thinking to shift about what a sick person looks like, it's a start and maybe that person in turn will educate someone else.

Just so you know within my family and friends I do whine or complain a bit about how I'm feeling. It is my way of putting up a boundary and lowering expectations, since they can't always see how I'm feeling. I can tell you also though I am still sick and have a lot to deal with, now that I'm on a better treatment plan and have good doctors on board and my friends and family understand better, I am improving and am hopeful, I will continue to do so. I understand though where you are at right now and how overwhelming it is, but you will get on the other side of this and be able to look back on it from a better place. Stay hopeful and take care.

[bequich]

Thanks for your responses, sorry I did not respond sooner, my 3 year old had his scheduled tonsillitis, and its been a tough week!

To answer some questions, The stroke was caused by hemoplegic migraines.

My daughter has food intolerance's and reflux, she developed food aversions and has a feeding tube. Developmentally she is right where she is supposed to be. We are being tested for mitochondrial disease, but so far all the test are negative.

I have my first appointment with the specialist for POTS on September 13th and hopefully I will get more answers.

Thanks for your responses