Hi Guys-Popping In For A Visit

[lieze]

I've been reading the last day or two. I see some of the same members posting and many new.

My disability hearing is coming up in two weeks so I am trying to prepare myself for that.

One of the big questions all along from disability has been the anxiety component. Specifically the case manager I met with at the lawyer's office was like come on you're a nurse this sounds like anxiety don't you think?

So I am trying to prepare myself to speak to that if asked by the judge and it has never felt like an easy task to try to explain POTS to anyone.

I can't even really get my family members on board with understanding my limitations so I question how will I convey accurately what is going on with me to a judge.

Just wanted to say hi to the new members and for the older ones let you know I am still hanging in there.

I rarely have POTS episodes any more due to modifying my lifestyle so extremely.

I have about 2-3 hours function per day.

I am noticing a lot of the cognitive impairment now, with poor memory and difficulty with word recall.

The fatigue seems comparable with acquaintances who suffer with chronic fatigue.

I also am still struggling with food.

Right now it's almost all meat for me and I worry about the health impact of that long term but I seem to react to all plants. I spent the first part of my life being a veggie nut and basically lived on salads. It took my body a long time to adjust to so much meat but other than being underweight and having a very low body fat component, much lower than what would seem healthy. I seem to be doing okay with the meat.

I eat about a pound and a half per day to keep up with my energy requirements. OH I miss bread! And carbs in general. So much I dream about them. I've tried about all of them and react everytime.

Anyway not sure how vocal I'll be but I'm here reading. Looking forward to my trial and hoping for a favorable outcome obviously.

[sue1234]

Hey Leize!! I am glad to hear you are a tiny better with your POTS.

As far as the anxiety, you can point out that physiological anxiety is related due to the release of adrenaline. The adrenaline release is released in POTS(in some circumstances, not all) due to when we get upright, our body goes in the "fight-or-flight" mode to help our cardiovascular system cope. Now, multiply that adrenaline release with everytime you need to get upright to go to the bathroom, shower, wash clothes, wash dishes, cook a little, etc. This happens just with doing activities of daily living. My whole point is, we have ALOT of adrenaline release just throughout our normal day. If anything pops up that is normally mildly stressful, it just compounds on top of our already fragile balance. So, yea, we are full of physiological anxiety!!

I hope you stay and contribute. It's been a while!

[Katybug]

Lieze,

It's so good to hear from you! I'm glad you're hanging in there. Meat only sounds like a truly extreme lifestyle change but if that's what you can tolerate then it's got to be better than not knowing. Has this diet at least helped your anemia?

Good luck with your hearing. Mine is tomorrow. I'm nervous but I'm also glad it's here and will be over and done with in 24 hours.

Good to hear from you!

Katie

[lieze]

Thank you Sue it's good to be chatting again and thanks for the coaching on the anxiety topic.

Katie I wish you the best tomorrow with your hearing. I hope it goes well and isn't too stressful for you.

I've been able to find about two at a time a few foods with some carb component that I can eat alongside my meat.

For a while it was great nothern beans and pears. I lost the pears first and then the great northerns.

Next I was onto cabbage and reacted to that. Right now it's mung beans and celery along with then tons of Gatorade and I can drink Sierra Mist natural.

The anemia comes in waves. I seem to do well for a while and then drop like a rocket out of the blue.

So last visit I was up and I go back in September.

I had 3 more doses of IV iron just about 6 months ago. That is stored in the bones and organs so it continues to come out and assist.

It seems like just the meat and nibbles of my Flinstone vitamin isn't enough iron but I don't know.

If I take too much vitamin at once I wheeze due to the corn content I would assume.

[HopeSprings]

Lieze! I have often thought of you and wondered how you were doing. My hearing is in 2 weeks too and I also worry about trying to convey verbally what this is like. I typed it all out in advance and my attorney submitted it to the hearing office so I'm hoping the judge will refer to that. I think just the act of writing it all down has also helped me to organize my thoughts and the attorney said it's often easier to remember something you have written. I think that's true, especially when there are cognitive/memory issues as in our situation. Glad the POTS is better, but sorry to hear you're still struggling otherwise. Good luck with your hearing and please keep us posted on you.

~~~Good luck KatyBug!!!~~~~

[bebe127]

Hi Lieze,

I'm fairly new here, but thought I'd put my (or shall I say, Michelle Roger's) two cents in on the ever-popular anxiety issue. The following is an article titled, Psychology and Dysautonomia, written by Michelle Roger, former licensed Neuropsychologist in Melbourne, Australia, and current dyautonomia patient:

http://www.dysautonomiasos.com/#!psychology-and-dysautonomia/c20ox

Hope you find it helpful, specifically:

According to Svetlana Blitshteyn, Clinical Assistant Professor of Neurology State University of New York at Buffalo School of Medicine and Biomedical Sciences, “As a symptom, anxiety can occur in a number of common medical conditions. Furthermore, anxiety can be directly caused by various physiologic factors, such as hypoglycemia, hypoxia, hypercapnia, hypovolemia and hypoperfusion. Therefore, it should come as no surprise that patients with POTS, a disorder that is characterized by hypovolemia, orthostatic cerebral hypoperfusion and excessive rise in standing plasma norepinephrine, may experience anxiety among many other symptoms.” (1) Postural tachycardia syndrome and anxiety disorders. Editors Note by Svetlana Blitshteyn, Clinical Assistant Professor of Neurology State University of New York at Buffalo School of Medicine and Biomedical Sciences.

According to Raj, et al, “Peripheral plasma norepinephrine (NE) is frequently raised in patients with POTS, particularly when upright, and many clinical features of POTS such as tachycardia, palpitations, shortness of breath, chest discomfort and tremor mimic the hyperadrenergic features of a panic attack.” (2) Psychiatric profile and attention deficits in postural tachycardia syndrome. Raj V, Haman KL, Raj SR, Byrne D, Blakely RD, Bioggioni I, Robertson D, Shelton RC., Journal of Neurology, Neurosurgery and Psychiatry 2009; 80: 339-44.

Best wishes on your hearing

Bebe

[ShakeyTheOwl]

Wishing you ALL the best with SSD hearings.

It can be challenging, and feel overwhelming.

(Been there , and fortunate to be quickly)

I look forward to reading positive results for you ALL!

[ShakeyTheOwl]

*quickly approved

(Three months from filling)