Hope

This is getting harder on my kids. No more temporary illness that they have to wait out. They are all seeing that this thing is hanging around and I am not meeting expectations. I feel like my kids and relatives (well meaning of course), are always encouraging me to get out and do things beyond my strength. I'm learning to live at my own pace, but it does get depressing. I find inner strength in Christ.

hippychic,

Do you remember getting bitten by a tick? I was tested for Lyme with blood cultures, which were negative. I don't know if that is the standard method or the good method. I don't remember ever getting bitten by a tick. Can you tell the difference between a tick bite and a monster mosquito bite or a spider bite? I used to go up north every summer as a kid, could I have been bitten without realizing it was a tick? And finally, how is the infectious disease doc treating you for Lyme?

Sheila, I'm sorry you are feeling so bad. My body doesn't regulate temperature well either and I find wearing cotton clothing and using cotton blankets works better to keep from going to extremes. The synthetics just don't let your body breathe. Fleece will always make me feel worse. I layer my self and my bed. I still end up throwing layers on and off, but I don't feel as miserable with cotton. Just a thought. It may not work for everyone.

Sounds interesting!

Your state may be different, but I just downloaded a form from the Secretary of State filled out my part and took it to the cardiologist with me and they filled out their part. Then I mailed it in to the address provided. The first one I applied for was temporary since I couldn't comprehend how long I would be needing it. I just received a new one that is permanent that I had my neurologist sign for. I think it's the nature of POTS to not be consistent. I get some days where my heart rate doesn't ever get over 90. Then there's the rest of the days where it will go from 125 to 89, to 111, or 148 etc. My blood pressure is very inconsistent as well. I wouldn't worry about it. I have a family member who is disabled with MS. He is allowed to work 20 hours a week on disability and some weeks he can and other weeks there's no way. I was a little nervous at first too, but I figured the worst that could happen is that they don't give it to me. But they did, and I'm very grateful! Now if I could just be well enough to drive so I could use the darn thing

Interesting, thanks for posting this.

I only drink almond milk now so that Amande yogurt looks good. I just have to see who sells it around here.

Thanks for the homemade yogurt info

Thank you! I look forward to watching it and adding it to my list of "pass-alongs".

Thanks for posting. Still trying to get it to play. I may be too far from my router. I'll keep trying to figure it out.

Ok, I guess I should have Googled it first. It looks like it might be part of my Meniere's Syndrome. Crud! I've never had this symptom before, at least not for more than a minute or so. Maybe my ear exercises will help. I can't take spring. Too many symptoms!

It started a couple days ago, but today it's constant. Every noise reverberates through my head. When cars go by outside, pressure runs through my head. I'm having a more weak and tired stretch here, but this noise thing is driving me crazy! I searched it and can't find anything here, maybe I'm not putting in the right criteria. Anybody else have this?

I sure hope the next neurologist has some answers for you. It's too bad we can't all get full body MRI's =) Keep us updated.

Have you seen a Neurologist?

TY

Not I. Have you called your doctor? Maybe a medication isn't agreeing with you? Hope you get an answer quick.

care to share the recipe?

Not enough sleep definitely equals worse symptoms for me. I'm curious to see if somebody has a good tip on this one.

I take probiotics daily. I do well with them. I don't do well with yogurt.

I'm sure you will get a lot of responses on this that will be of more help to you. I just want to say on the Dinet home page there is a pamphlet, but I think it's a little too vague for your purposes. But on the same home page you can find detailed info to print out that might help. I have printed a lot off of that to give to people. Keep us posted. I'm starting to follow all the CFS information I can since I feel my POTS is a symptom of my CFS. I didn't realize CFS was so damaging and progressive. I always thought it was just a matter of me being more tired than others until I was diagnosed with POTS and I'm finding out that many of my symptoms are probably coming from the CFS and the POTS is more of another symptom of it.

I hope you will find the answers you need.

Thanks for posting. It was very interesting, although I think it killed my hopes for a recovery. I seem to be coming to that realization anyway lately. It is nice to see possibly why I am not recovery though. I would like to send things like this to my docs.

A diagnosis is great! Maybe since they've caught this when you are young you will be better able to manage it through life. Let us know if your plan works for you.

I will also be praying for you both. So glad her doctor is on top of things!

2 of my boys' ears light up very bright after eating certain foods. Not sure if this is the same thing. I wonder about the one having dysautonomia but he hasn't been tested. The other has been allergy tested but didn't react to anything. The allergist said he is probably allergic to the preservatives, or dies in some foods.

YES! I used to get it a lot when I was a teen (nobody knew then I had POTS). It would throw me into a panic attack because it was so scary to me. I get an episode here and there now, but not often like when I was young. In the list of symptoms on the Dinet Website, they have listed "a feeling of detachment". I feel detached alright! I know it isn't any of my meds doing it because I wasn't on any meds as a teen when that started.