Disbelief

[kalamazoo]

I still have a hard time accepting that this is what I have, I always think its something worse and something even more major. Granted I do have other symptoms such as vein swelling and pooling which my doctor isn't knowledgeable enough to know if it correlates to my pots. So whenever I get hot my veins swell out of my skin and throb so bad that I have to elevate them. It was suspected erythromelalgia but I can't find a good doctor here in alaska to diagnose me. So I'm stuck constant worrying about what is actually wrong or if it just Is pots. Does any one else feel like this?

Also thank you all so much for being such a great community to lean on, everyone here is so understanding and its such a relief since no one in my life will ever truly understand how hard getting through the day is.

[misstraci]

I'm also very thankful for everyone here and for this forum, it's been very comforting and nice to meet people experiencing similar difficulties in life.

I want to say that I completely agree with what you are saying, I am 100% not convinced that what is wrong with me is "just pots". Yes, it can be confirmed that when we are upright the HR skyrockets, etc etc. but why, there is always a cause for effect. Is it lyme diease, mast cell, adrenal related, heart related, or what. even though my heart has been checked out, i still get really scared that what if something were bad wrong causing all the cardio symptoms.

I'm sorry you're worrying and feeling bad but know that I/we can relate and that things will get better; they have to

[Monstrosity]

I struggle with the acceptance too.

[jpjd59]

I think this is a problem that many struggle with. Even as a caregiver I find myself thinking that my daughter has to have something else going on rather than "just POTS". Since she was diagnosed with POTS right after a viral illness we are convinced that this is the problem. Still struggling for answers though.

[bebe127]

I too stuggle with this daily; the thoughts of "is this just POTS". My Dr. is not all that knowledgeable either, so that just fuels my worry. I do not have the vein swelling and pooling that you describe, and am so sorry that you are having to deal with this. I have good days and bad, and often times I allow the worry and fear to rule my life. This is not healthy, and in my mind I understand this, but my body doesn't always listen (sometimes it's the other way around). I try to lean on my faith as well as the people on this/these sites for encouragement and support. After all, it is only those that stuggle daily with chronic illness that truly understand what we are going through. I am truly thankful for this site and all the encouragement, support, and information that it gives me. I pray that you get answers soon. I know how hard it is to find Dr.s that have an understanding of these conditions as I have had a tough time trying to find anyone in my area (and I live near a huge metropolitan area) that even knows anything about POTS or Dystautonomia much less one that treats it. I'm so sorry you are frustrated! Rest assured there are many in the boat with you and hopefully with time and patience we can all find what we are looking for together.

Richest blessings to you

[k&ajsmom]

In the same boat as all of you. I refuse to except POTS is it, I know, or atleast have an internal instinct that there is a cause to mine ,so I refuse to stop looking and without this forum I would be so lost. I think mcas is the best fit for me. But really this is a guess kinda based on hope and loose simialarities to others.

I do know however if I exhaust all my resources and dont find an answer I may have to except it, as is and that would be hard for me .The biggest thing for me is cardiac symptoms. The other symptoms are horriable but that is the one that unnerves me the most. Of course I have a hard time swallowing that its benign since every nerve in my body is screaming run to the er, your not gonna make it this time!!!! <cue nervous laughter>

I have the swelling of my veins in my hands and feet especially, its very prominant if its warm out and if I walk at all and is very uncomfortable. Sometimes it happens just sitting on the couch though??? None of the doctors Ive seen seem to care about it. Ill hang my legs in a cold shower when it happens and it helps to constrict them.

I hope u can find some peace with this and a good physician. Hang in there and take care....=)

[jenniferlynne76]

You're definitely not alone here. While there is clearly something neurological happening to me I do find myself often wondering if its really "just" POTS. It seems like there has to be some other explanation. And what frustrates me is that without a full explanation, a full cure is darned near impossible.

Hang in there and take some comfort in knowing you are not alone.

-Jen

[Monstrosity]

No diagnosis code, and its a collection of symptoms. Root cause thats what I want to know. What is causing my autonomic dysfunction.

[kalamazoo]

It's comforting to know I'm not alone. This is so frustrating, especially because I dont think many doctors try to find the root of the problem. Such as whatever causes thee symptoms. I think that's the ones thing I especially hate about pots is that there seems to be very few doctors interested in the underlying causes. I know pots isn't an actual disease but is symptoms of dysautonomia. What I worry about is that what if dysautonomia is a symptom of another underlying disease. This is the thing that has puzzled me.

[FarmerAmy]

I am currently seeing a doctor who practices Functional Medicine, which looks at the root cause of disease. My doctor has diagnosed me with adrenal insufficiency and fungal dysbiosis and she thinks these are contributing to my POTS symptoms. She has me taking a lot of supplements and also really focusing on nutrition to improve my immunity and overall health.

No miracle cure so far. But I like her approach much better than my cardiologist's approach, which was to just throw different meds at me.

Look at the Institute for Functional Medicine online to find a doctor in your area.

As for "is it just POTS or something else" I sort of feel like who knows?!? I doubt I'll ever find the answer, so I try to focus on my overall health and work to manage my symptoms.

[badhbt]

Add me to the list.

I work in the medical field and I know sometimes Doctors just don't know. I have a strong sense that something else is going on which makes me restless and concerned.

Now that I have been diagnosed with P.O.T.S. it seems like the Doctors don't want to find the cause. My neurologist laughed out loud and told me you know we just say virus if we don't know. That didn't give me a warm and fuzzy feeling.

When I had my first symptoms in August...I was working out, I had no stress in my life, i hadn't been sick...I just got smacked in the face with P.O.T.S and I have been stunned since....lol

[Traceyf]

Absolutely.....

I always wonder what is driving this....

Even though I know its not anxiety ( as they so like to throw at you ). Sometimes I wonder is this what having a nervous breakdown feels like?? There are times its just all so all consuming and I think for me I have to take a step back and tell myself that I cannot control everything. I can just try to take the best care of myself for myself and my families sake. If I hyper focus and the symptoms and constantly am reading about it, I sometimes get caught up in the overall " despair" that having a chronic illness can bring with it. A positive mind goes a long long way with this craziness....its just sometimes very hard to divert myself in that direction. Because so little is known....I find it to be a very lonely illness.

[Joann]

I am like everyone else on this post. I still do not believe I have "just POTS". And even if it is, I want to know why, the cause of it, the type of it. I am tired of doctors just looking at one symptom and trying to treat that. I often feel that there is a cardiac related problem or neurological problem, but so far no one is interested in looking any further.

I finally saw a local "expert" and she only wants to treat the bp and heart rate, she even said she didn't know about the other symptoms, she was not aware that these were symptoms related to this syndrome.

It has only been online here that I am finding information and people with similar experiences. I too, want answers. My next step is Cleveland Clinic, I have heard good things so I am hopeful I will find that doctor that will go further.

[Darlene]

i am having a hard time dealing with the things i can't do anymore because of dysautonomia. i just started going to counseling recently. i also think the dr.'s a missing something. i am always in pain, and dysautonomia alone wouldnt cause this.

[Zap]

Most of how I feel about this has been said - there may only be one problem, but POTS/Dysautonomia doesn't describe its cause. The only thing that will provide real treatment is a cause.

What is most cruel for me, is that low amounts of steroids used to break cycles of migraines pretty much make me normal again. I could sleep at the right time, feel rested, get up earlier than I had in years without issue, not have migraines, not have pain, not feel off, eat without paying for it later - pretty much eliminate the daily amount of fear over when, not if I will feel worse. I stand between a prescription no doctor will write (albeit with risks, but which are also known) and my life as I used to know it, or maybe even better. Otherwise, I'm in pain and frustrated often - and now that I've gotten sick, I feel like beaten death warmed over. Being sick is AWFUL with autonomic problems.

If it wasn't for my primary doctor, I wouldn't have even had the opportunity to run so many tests and try more things. I feel lucky by many regards, which just means that most of us get far from ideal treatment as people, let alone as patients.

[Relax86]

I am currently seeing a doctor who practices Functional Medicine, which looks at the root cause of disease. My doctor has diagnosed me with adrenal insufficiency and fungal dysbiosis and she thinks these are contributing to my POTS symptoms.

As for "is it just POTS or something else" I sort of feel like who knows?!? I doubt I'll ever find the answer, so I try to focus on my overall health and work to manage my symptoms.

I too originally had a Doc suggest adrenal insufficiency. She prescribed hydrocortisone to let my adrenals rest and get stronger again. It helped although all my other providers went ballistic due to the possible side effects of Addison's. Just wondering if HC was offered to you?

[Zap]

I too originally had a Doc suggest adrenal insufficiency. She prescribed hydrocortisone to let my adrenals rest and get stronger again. It helped although all my other providers went ballistic due to the possible side effects of Addison's. Just wondering if HC was offered to you?

I certainly think that while it can be controversial with many doctors, that adrenal imbalances could be a very reasonable explanation for things being out of whack. What was the regimen you used, and for how long? I know that things started going downhill for me during a period of high stress. I presume that this was a diagnosis made based on symptoms rather than tests?

[Angelaintexas]

Try to find a new dr. An electrophysiologist. I have 2 POTS drs I see, I live in central tx so luck me I drive 5 hours south to see one of them and 4 hours north to see the other one. Having a doctor who understands what's going on and knowing how to treat you is going to be what gives you your life back. If you have to fly to see a good dr, it will be worth it. And you may only have to come in once and he can keep in touch with your dr in Alaska. )

[Relax86]

ZAP: Prescribed 10mg at 8am and 10mg at noon...but I played around with the dosage until I found what my body liked and actually that changed over time, so it was difficult to keep up with. But originally all of my symptoms were terrible in the morning and improved by the evening (indicative of adrenal fatigue). I can't remember all of my symptoms/testing at the time but I had low electrolytes, decr blood volume, anemia, vit D deficiency, OH which resolved by around 4pm, tachy when upright, shortness of breath and who knows what else. I felt terrible. I felt the effect of the HC within 15 minutes of taking it and it helped tremendously. I went off of it after 2 weeks to have a cotroysn test which was negative and tried to stay off; but symptoms returned with a vengeance so I resumed the HC until I felt that I was strong enough to wean. I weaned very slowly and without difficulty. Overall, I like my body on HC better than off but I'm trying to stay off of it.