Hope

Thanks everybody for your input Much appreciated!

Thanks for the info Might Mouse.

Mine come and go. It seems like there have been conversations on the forum before if you want to do a search. The nurse at my allergist asked her doctor about eye floaters and was told that she needed to drink more water. I found that interesting since most of us here struggle with hydration.

That sounds like a good idea, thank you!

Yes, this happens to me and it comes and goes. POTS is just part of dysautonomia. Temps can be deregulated by dysautonomia. Although, I also have CFS which also causes temps. But that doesn't mean there isn't something else going on with you, like a virus or a smoldering infection. Hope you are feeling better soon!

I'm pretty sure I have read all the old posts on this one. And they were "old". I'm wondering if anybody has any new opinions on the vests that they have been using. It is probably an odd time of year to buy one, but after the summer I had I want to make sure I have one on hand at spring's first warm temp!

I guess I'm a little vain and I don't want to walk around looking like I'm wearing a bullet proof vest, but the lighter looking ones all seem to be the kind that you soak in water. So do you walk around feeling wet and clammy in the kind that you soak, or is there some kind of wicking material that is dry against your skin and clothes?

I do sew, so I am thinking of possibly making one myself with pockets for slim ice packs if it comes to that. That route just doesn't seem real effective if you are out and need a recharge though.

Any opinions with experienced cooling vest wearers would be appreciated!

Becia, that's horrible! No, I've never had a seizure and here's praying that I never do! This is probably a stupid question, but have they done a brain MRI? Keep us posted. I hope this nightmare ends soon for you!

It makes sense

My bp is very low every morning. I take midodrine, drink lot's of fluids, eat a lot of salt and muddle through. I was just at the neurologist today. I saw the physician assistant and she thinks I should wear my compression socks or full hose every day. I usually only wear my compression socks on extra bad days, but I'm thinking I should give this a try wearing them every day.

Nope.

Low pressure systems whack me out. Drops my bp like a hot potato.

Midodrine helps, but I always bring back up salt items, or a handful of real licorice bites while waiting for it to work. Licorice bits seem to bring it up at least 10 points (for me) pretty quick. It doesn't last long though but it gets me through until the midodrine kicks in. Small bags of very salty potato chips in my purse is also helpful.

Yes, I was having trouble with this symptom Sunday evening/night. I used to get it a lot about 2 years ago, but it had just gone away eventually. I hope this weekend was a fluke and it is not going to be coming back regularly. I've been pretty symptomatic overall lately, so that was just one more symptom on the pile.

Sounds good!

I've had to eat every 2 hours since I was a teen. It just becomes a way of life. It's suppose to be better for you anyway.

For me it depends on the day and my triggers for the low bp. It's different all the time.

Welcome!

I bought mine at Walgreen's on-line and I see they have men's also.

Spinner, Bebe,

Have you tried the home saliva test? After seeing this, I tried it this morning. Immediately it started streaming down and within a half hour it was all at the bottom. Now I should do some research to see if it is accurate. Just wondered if you guys tried it?

ASK2266,

The "Earthing" idea in general I think sounds like a healthy plan for anybody. The sunshine, fresh air, and feet in the grass is always a lift. Although I would not lay on a sheet that is plugged into any electrical outlet, even if it is just in the 3rd grounding return line. Especially while sleeping. That's just how I am. I wouldn't trust it, therefore I wouldn't sleep well. =)

Thanks Jackie, I will check out the egg replacer. I do try to avoid corn, but I will check it out

LOL! It sounds lazy to the average person, but makes perfect sense for people in our predicament! Thank the Lord for my mom, she helped me with all that.

A nutritionist or dietician sounds like a really good idea. I hope you find some relief soon!

Hope

Bebe,

I'm sorry you have no appetite. That's never fun. I'm sure you've probably read this on the home page under "what to avoid", but just a reminder:

Certain Foods, such as dairy products, may increase symptoms in some patients. White sugar and other refined carbohydrates can exacerbate hypotension by causing increased dilation in the gut (Mathias, 2000). It is important to identify and avoid food triggers. Studies show that gluten sensitivity may play a role in neurological disorders (Hadjivassiliou, Gibson, Davies-Jones, Lobo, Stephenson & Milford-Ward, 1996).

Getting rid of gluten, dairy and white sugar has gotten rid of the big "D" for me, well that and I take probiotics. If I stray from this, it's not good! I had lost 40 pounds, now I have gained about 5 pounds back.

I hope you find something that tempts you to eat!

I have some anxiety, or what feels like anxiety. Anti anxiety meds make me worse though, at least the ones I've tried. They will put me into actual panic attacks for what seems like no apparent reason, like standing at the sink doing my dishes minding my own business, then BAM! I'm freaking out. This only happens when I take anxiety meds. The reason I tried them is because I sometimes feel too uptight and it's hard to calm down. My beta blocker seems to do an ok job at keeping me calm most of the time, but sometimes it's just not enough.

Spinner,

Depending on the reason for your POTS, I think Leaky Gut is a good theory. Dr. Oz did a show on this and my husband and I found it interesting. He said it is possible to heal the leaky gut and showed how to do it. Now whether or not the damage to the autonomic nervous system would heal after the leaky gut heals I guess would have to be seen. I seems like if the other cells in your body have healing ability, so would the cells of your autonomic nervous system.

Warning: A Story of my past health chain of events. Not graphic, but may be lengthy.

This leaky gut theory is one I think about. My symptoms definitely started when I was a teen, after I had mono and some other long-term viral infections. I find it interesting that none of my close friends or family caught them. It's like my immune system was already susceptible to infection.

Before I was ill, when I was 12, my brother and I spent time in Florida with my Aunt. We both came back with a fungal skin rash (also my sister went a couple years later and came back with the same rash). The dermatologist said to put Selsun blue on it. I still do this when it comes up and it goes away on my skin. He also said that you have to have something "missing" in your genes to get it, and that not everybody gets it. So now, many years later, my symptoms suck me under and I am diagnosed with POTS. I find out at that time that my cousin who is just a few years older than me is very ill with very closely related symptoms. At the time it was going on 5 years that she was in bad shape, it's now 7 years for her. She's been through the gamut with doctors and tests. I will add that she often goes back and forth to Florida, and in conversation with my Aunt that we have all stayed with, my Aunt tells her that she also has the fungal rash. In one of my cousins tests with a naturopathic doctor, she finds out that she has a mutated gene. The doctor tells her that is what made her susceptible to the fungus and it has gone inside and has attached itself to her "nervous system" (if the doctor specified which one, my cousin did not relay that to me). She has been treated with herbal remedies so far, but interestingly, only feels better when she is spending time in Florida (outside of Michigan). I don't know if it has anything to do with it, just my train of thought, but my allergist told me there are too many molds in Michigan to test for in an allergy test. I haven't looked into it, but I wonder if Florida has a lower mold count? They do get more sun and are surrounded by salt water, not fresh water. I know there are people in Florida with POTS, but maybe they have it for a different reason, or maybe they would be worse if they came to Michigan?

So I guess my long-winded point is, for some people I think Leaky Gut is a good possibility! I'm not sure it would solve ALL my problems at this stage of the game to get rid of the fungus, as now I have old viruses that go back and forth between dormant and active that I believe are contributing to the damage on my autonomic nervous system. But I think getting rid of the fungus would help my immune system greatly, and POSSIBLY make my old viruses dormant with the result of my immune system improving. One last comment, my sister and brother no longer get the fungal rash. I don't know if that means they were able to get rid of the fungus entirely, or it is dormant waiting to strike them also. They are reasonably healthy for their ages.

Thanks for the post Spinner!

I have not taken the time to edit or spell check, sorry!

Not oily. I've been blurry since my big set back 2 years ago, and I eat carrots just about daily as I live on soup and salad. I hope the carrots work for you =)