Raisin

Ok..this may be silly but I tried some migraine prescriptions in the past (have had them sice I was about 14 or 15 years old and none of them worked for me. But, when I take Excedrine Migraine, it works! I'm sure you have tried this before but I just thought in case you haven't, it may be worth a try! Worth a good mention any way.

Something will work for you. Trial and error. My neuro said that for me (we can't find a cause), it will be alot of this and that and the other and when I do everything together, it will make a difference. And he's right. I even made a cheesecake yesterday from scratch after doing several other things yesterday! I wouldn't have been able to do this in the past. One millimeter at a time I guess. Onward and upward!

Yes! Kings Island! I'm from Ohio too. I try to wear Spanx along with my thigh high compression socks. Sometimes it is ok. Sometimes I can't due to abdominal pain. Neuro suggested I get the Spanx that go all the way up to my rib cage, when I wear everything, I feel like I am wrapped in a rubber band. But, no panty lines! Hahahaha! Sometimes I crack myself up....... Prayers for you! Let us know!

Potluck, I understand what you are saying about the Klonopin. IMO, it is very very important to do a taper off benzos and it needs to be a very very slow taper. At the same time, I have to say that benzos are the only thing that seems to calm my nervous system down. Interestingly, when I take my promethazine for nausea at night, I sleep very well and have less anxiety the next day. I know these work on the central nervous system. It is a constant quandary trying to figure out what works and what doesn't for each of us. it sounds like the depression in the am and not in the pm should be a very good clue for someone to help you figure out. What is your body doing in the am and not in the pm, right? Hmmmm.....I wish I could figure this out for you! Someone out there will. Keep hanging in there. This too shall pass.

No fried. I haven't had this but I wish I could help many folks have talked about renin/aldosterone connections to pots. I believe this has to do with the kidneys but I haven't been able to have those tests or really understand them. I believe it does have to do with fluid retention though and the kidneys. Sorry I can't be more help!

I think the test I had showing this was called hemodynamics testing. They put a radioactive tracer in me while I was supine and watched where all my circulation was going. At the end, I just had to sit up and they took some more measurements. They were able to measure blood cell mass, blood volume and blood pooling. Pretty cool actually. Doc said my volume was down, blood cell mass decreased and saw the 40% pooling just upon sitting up. He said we are supposed to pool about 10-12% when we stand and within a couple seconds, our bodies push most of the blood back up. I felt vindicated which I'm sure many here understand with most of us feeling like dog poo and every test coming back normal. I sure hope you can get those tests also. For me, yes, the Midodrine has been very helpful. Gotta get those blood vessels to cooperate, eh?! Lol.

I think that all of the things you are feeling are normal for the circumstance. I am wondering if some of the folks from your church might be of assistance (didn't you go to Cedar Point with them? I may be incorrect on this and if I am I apologize. ). I am glad you will have some folks coming in re healthcare. Who knows? You may be like, "Hey, get out of here. I need to make my bread". You are going through some changes. Even positive changes can bring anxiety. Maybe it is worth a shot. I hope you let us know.

Hi Mike. I have breathing problems and I don't have a good medical explanation other than I know the midodrine helps me alot and I also know that I have extreme blood pooling (40% just upon sitting up). I asked my GI doc if the lower body has blood pooling, then why don't the intestines, stomach, etc. have more blood to work and therefore work just fine. He said that when the blood pools, it pools in the tissues and doesn't go where it is supposed to go. Therefore, I assume that maybe our lungs and/or our diaphragm may not be getting what they need also? Just a guess. I'm sure someone else could say something much more enlightening. Lol.

I just looked at Dysautonomia International and it says turquoise. Don't know if others are saying different?

I had pain that felt like severe indigestion years ago (I had never had indigestion before) and was popping Tums like crazy one night (it had woken me up). Went to the ER and they did an ultrasound and saw some stones so I scheduled surgery and had the gallbladder removed. When they took it out, they said there were so many that there were too many to count. I am Scandinavian and have read since then that that population tends to get them more often. I bRing that up only because I see in your pic that you are blonde too. Lol.

Yes Aeris. Few points to mention for you.... When I got to my appt., I mentioned that my rheumatologist said the doc (Dr. Fernandez, dermatology, downtown Crile Bldg.) was the only one who does these lip biopsies and she said that that isn't the case at all. I was like, whaaaaat? My rheumatologist seems fairly new to the clinic so maybe she misunderstood something or maybe she just thinks he is that good? Anyway, it went fine and he was super nice and so was his nurse Laurie and also he had a nice resident in with us named Dr. Wong. He did the procedure and explained everything before and during to me. It wasn't any longer than about 5 mins. For the actual procedure and 3 stitches later, I was done! The only pinch was the numbing shot which was easier than a dental shot for sure. They said they will call me with the results. He actually said that HE will call me with the results. I must have had a shocked look on my face because I am used to a stranger calling me with test results for every other doc (therefore leaving it majorly difficult to ask a question) and I said, "YOuuuuu are going to call?" They all laughed. After the numbing wore off, it was moderately painful (Advil necessary) but I woke up this morning pretty darn good. I just have to be careful chewing because my bottom teeth feel like they want to pull on the stitches a bit. I don't even think anyone would notice that my lip is slightly swollen. A little lipstick and voila! Lol. You have to stick to soft foods the first day and nothing hot (tea, coffee) or spicy so keep that in mind. I don't have a bump which may be because of the stitches like you said although I don't have bumps per se( just red marks) where my skin biopsies were. Let us know please how it goes!

Prayers!!!

Thanks Sarah. I'm sure this will help others who are anxious about applying for disability or hearings.

Thanks Rich. I am going to go on my own. You did mean local anesthetic, right? This is a dermatologist but this is the only thing he does at the Cleve Clinic. My rheumatologist said he is the only doc at the clinic that does this procedure. I find that odd but maybe she is right and if so, he does quite alot of them apparently as it took me three months to get in.

No, but maybe some new bloodwork is in order? If it seems out of the ordinary for you, then maybe a good once over again would be helpful? Hope you feel better!

Thank you Runnersmom! Glad to hear about the very little pain part! Girls are lucky because we can cover up most bruising with makeup if there is any of that on the outside.

Thanks Corina!

Anyone have a lip biopsy for Sjogrens that can provide advice? Is my lip going to be swollen for awhile? Will it hurt alot or just a little? should I go by myself or have someone go with me? I don't usually get nervous but I think it's just the idea of them cutting into my lip that sounds kinda freaky. I'm usually pretty good with pain though.

Some times when I actually do get off an elevator, my body keeps repeating the "landing" feeling for a few minutes afterward. I have to stand still or sit because I can't walk when I am "landing" every few seconds. Lol. Floor 9.....accessories....Floor 8 .....women's loungerie.....floor 7 ....men's suits....floor 6......Dear Lord...."

I know this may sound crazy but my understanding of exposure therapy begins by discussions of the triggering factor. (?) Is it possible to start the therapy with you laying down thereby decreasing the Pots type reaction factor? I'm sure it wouldn't remove it altogether but it may be worth a shot. Please pardon me if I am way off. I send you good wishes!

Are you out there Sarah? Wondering how you are feeling? Hope you are ok.

I find it I treating that so many are bringing up vitamin deficiency. I was very down about 2 months ago and found out my B6 is very low. Doc said it probably wouldn't be clinically significant but I can say that since I have been supplementing with B6 , I think I am now on an upswing. please know you are not alone. Hang tight! I have never heard of Selegiline. I will look that up!

I know that for me, the midodrine doesn't raise my blood pressure at all. I thought it would help raise it but it stays the same. But, it does help me tremendously in the function factor. Without it, I think I pretty much have only a teaspoon of blood actually reaching my lungs and my brain. Lol. I wonder what others experience also. I have noticed my diastolic is going below 60 alot but this is at night when the midodrine should have "worn off"?

I wish I could help more to answer your question Potluck. I don't have hyperadrenergic pots according to my neurologist but my NE did go to 750 standing. Over the past, I was unable to tolerate snris. They made me feel like I was plugged I to an electric socket and I was not sleeping which then became a vicious cycle. No sleep, more depression. I wanted to answer your post , though, because I just want you to know you are not alone. Depression is certainly very real and needs to be addressed. Do you remember what helped you in the past? Hugs to you.

So glad you gave us an update. I am also glad to hear of small improvements. Is there a chance that these small improvements might just keep on coming? Alot of small improvements over time mean a big improvement. prayers are with you and Tyler.