Raisin

I sometimes stop and realize a room looks like it is smoky when it isn't at all. I do have very dry eyes and Sicca symptoms but Sjogrens has been ruled out with a lip biopsy. I also get migraines which are sometimes ocular but that is a different thing I believe because when that happens, I only see half of things (missing part of vision) . So, anyone else out there experience this or have any ideas? Please don't say they are paranormal visions because i googled and alot of that comes up and I don't want to go there. Lol.

I agree Freaked. I am also so much more functional now that before. There is hope. Thanks for sharing.

Good for you Becia! You have weathered the storm and it seems there is a rainbow!

Hi Potluck. I am so sorry you are going through this. It does sound so physiological due to the cyclical nature daily. So, I have been asking myself what do I do when I am at the bottom of the hill when on this apparent roller coaster? I am praying on this. How do we not 'derail' when something is happening that is so difficult. (symptom flares, being dismissed, anxiety, etc.). I will pray for you as well. I think we need to hang on to the hope at all costs when we are down. I know that for me, when I feel horrible, I forget what it feels like to feel well. When I am doing fairly well, I forget what it felt like to feel so horrible. Just know that it will get better. You were doing so much better before and you will be there again. Please know that feel for you and I understand.

Goodness gracious! You took quite a spill! Prayers to you!

Wow! How does one test bicarbonate levels? Inquiring minds want to know! I had to leave a store today because I was breathing as if I have a severe case of COPD. But I don't.

Sorry to hear this! Hope you feel better! Sleep does trigger (lack of sleep) mine as well.

Yes. Had it done a few months ago. Like Mike said, it wasn't taxing for me either. I was laying flat though for about an hour with the same protocol (they injected something in my arm through an I've about every 10 minutes). After about an hour, they had me sit up and took a couple more measurements (mine only took about 3 minutes) and then I was all done. No worries!

I had an abnormal QSart. No real itching problems except maybe sometimes after I take a hotter shower. Have had a face burning feeling at times. I do not have small fiber neuropathy though. My neurologist said I have autonomic neuropathy. I also have hypohidrosis in trunk region and anhydrosis in arms and legs.

I just read something interesting about hypo perfusion and it stated that it can cause depression/anxiety. I was thinking about you because in the mornings, we have been without water for quite some time. I wondered If when you wake up and you are up for awhile, are you drinking water then? Just a thought. I am so glad that things may be looking up anyway for you re the medication change and your run today! Let's pray that this is an upward trend!

Fingers crossed! Let us know!

Yeah. My cousin said we should all have a support group where we are all in motorized recliners and when we need to speak, we can just raise our heads, speak, and then lower back down. Hahahaha! I am glad you are getting the life alert. I think it will give you some added security. You don't have to have the apt. Set up in two days, right? Pace yourself and glug down your water. Rome was not built in a day and neither does your apt. need to be built in a day. Even God had to rest on The seventh day. Heeheehee hee. Ok,....I'm cracking myself up again. Long live the pillow top!

Forgot to mention he said to drink the water within 2 minutes for it to work.

Yeah. I hear ya. Oh! I forgot to mention that the neuro said I have to drink the 16 oz. within two minutes for it to work. This, of course, makes me feel like I am drowning. Lol! I definitely felt better getting the standing Norepinephrine tested as like you said, it told me that something physiologically was going on and we all seem to feel better knowing it just isn't "in our heads". So, thanks to you I drank more water yesterday and have some bottles right next to me now! Cheers mate!

I hate screechy showers! I LOVE comfy beds. We spend so much time in them, it's nice to have a good one, eh? Well, try to surround yourself with everything calming and things that make you smile. Wouldn't it be awesome if we could all come over and drink some tea with you? We could all lay on the floor and just signal somehow that we have something to say. Lol!

I meant it used to work better than it does now. Lol.

Oh ok. I take mine at about 6 in the evening and it seems to start kicking in around 11 so that hopefully I am asleep before midnight. It also seems it used to work better than it used to. Harrumph.

You are there! Yay! Dont worry if you still experience some big emotions. It's ok. I always found that a big cry lowers the anxiety hormones anyway. One thing I did when I was scared was that I carried a list of people that were routing for me in my pocket. Then I didn't feel as lonely. I also recommend a good soft stuffed animal. Hang in there! Keep us apprised!

Yes, I think Merlin has some good wisdom there! I just noted in another post that my neuro told me to drink 16 oz. of water (he told me it has to be water) before even getting out of bed and to put the compression socks on before getting out of bed. He also told me to take my midodrine as well and wait 10 mins. Before standing up. I can say that these things have given me some Improvement. He did mention the fact that we haven't been hydrating through the night. It does make sense that the hr speeds up when we are not getting enough blood to the brain. Explained best by the fact that our bodies say that the brain comes first when it comes to wanting the proper amount of blood flow.

You're welcome. I get manicy on antidepressants so I am no help in that area. They made me more anxious and unable to sleep. Luckily, I have restless leg syndrome and the Gabapentin I take for that also tires me out at night. It does sound like you're in a bit of a quandary re the meds. I have been there. Just know you are not alone. Prayers for you Potluck! Keep in touch with us please!

Well, I noticed you said you chug down some water when you feel a flare coming on. My neurologist said that if we drink 16 ounces of water (must be only water) when having a bad day and or first thing in the morning before even getting out of bed, it raises our blood volume for a few hours. Therefore, it sounds like you are naturally doing what you should. Also, even "non hyperadrenergic" pots pts. Can have a significant increase in Norepinephrine (mine was 750 when standing, normal top of range 500) and have that "fight or flight type of response. Therefore, it sounds like maybe what you are experiencing IMO is pretty normal for pots. Thanks for reminding me I need to drink more during the day. Maybe I will feel better more often if I keep up with it like you said. Easy to slack off the water when I am feeling better as well!

Fingers crossed! Let us know!

Yes. I have the same fear of the benzos as I went off them cold turkey once (NOT smart) and had an EXTREMELY difficult time. In fact, I probably should've been hospitalized. I fought staying off of them for a year but then realized that for me, my daily anxiety was truly dehabilitating and affecting my relationship and causing depression because I couldn't see my way out of just struggling through my daily existence. I haven't been able to take any type of antidepressant in the past so I couldn't think of any other options. I do notice also (speaking of circadian rhythms) that if I am asleep before 1 am, I can be ok the next day. After 1 am, I am a mess with the pots and anxiety. I know you have had sleep trouble. I wonder what would happen if we just slept through the mornings and woke up at noon? As crazy as it sounds, maybe we would override the cortisol surge or whatever the heck is happening in there.....just sayin. One thing odd also that happened to me on the Tilt test. Near the end of it when I was experiencing pretty severe pots symptoms, I just let my head kinda drop down. The nurse asked why I was doing that. I said, "I don't know." she asked if I wanted her to adjust the pillow so I could put my head back up. I said "No, actually, I'm feeling depressed." I found it interesting that as my pots symptoms got uncontrollable, my body automatically went into a depression phase. It didn't feel like a reaction to my situation but it did feel like an actual trigger physiologically if you know what I mean.

Thanks so much! It seems they have really targeted what is going on with Tyler (with your great help as well). It must be amazing if you look back at where you started. It doesn't sound perfect but there is hope and hope is good. You sound strong. Good job mom! I hope you are right about the promising research happening too! I will hang my hat on that this evening. Prayers.

It is important to provide support when we are having better days because we all know toooooo well what it feels like to have our bad days and a friendly word or prayer or joke can be so helpful. Thanks for bringing this up BigSkyFam! Oh! And prayers for your upcoming appt.!