Raisin

Heehee Blue!

Yay Andy! Hope it continues to work for you!

Getting another MRI at the Clinic....called but there is no upright MRI. None at the other major hospital either. Bummed!

One thing I had trouble with is that I have a list of questions but then after they answer the question, I brain fog and kind of do an "oh" answer. Lol For instance, is the blood pooling in my legs? Then, he said yes. AFTER the appt. , I thought, "why didn't I ask him WHY he thinks the blood is pooling?" Or, when they order a test, I would like to ask what they are looking for in suggesting said test. Another thing I might suggest is to go over your list again before the doc leaves the room. For me, it is like going to the grocery store and not double checking the list again before the check out lane. I THINK I have gotten it all but inevitably....I forgot something.....again.

Thank you Katybug! I see my neurologist Monday. I will discuss upright MRI and hope he takes me seriously. One can only try!

Question please....I had an MRI last year which was normal but noted mild reversal of the cervical lordosis. They also checked the spinal fluid on the MRI which was ok. These were laying down of course. I am unsure and searching but I am wondering if I have an upright MRI, would they see a possible chiaari malformation and/or a difference in the spinal fluid flow or pressure? I have ataxia when upright for awhile and feel like maybe something is being compressed or blocked? I also have hypovolemia so what if there isn't enough blood which now makes the symptoms more prevalent. Searching....anyone have input?

Thanks for the education! I just went to urgent care with urinary symptoms also. I will have to look into that. I must say that in my case the Midodrine has been a lifesaver re daily functioning. I hope it is not a problem. Pondering.....

I see Dr. jaeger at CC and he has been very nice.. I see a neurologist also at a CC satellite but I met Dr. Shields during my sweat test and he seemed very nice as well. Dr. Jaeger said he handles the Vascular part of the Dysautonomia and the neurologists cover the rest. I would highly recommend having questions written out beforehand so that you feel you get the answers you are looking for during the visit. Dr. jaeger also has a nurse named Chad who was awesome and when I listed all my symptoms and said I was embarrassed, he said that everyone comes there with a long list of symptoms and that, "you are safe here". How cool was that?! Best of luck!

I just wanted to say I feel for you. I was waking at different times of the night and having to gasp for air. It was like everything regarding breathing had stopped. Luckily, it seems to have subsided for now. It is scary when it happens, isn't it? Best of luck with the sleep study! I hope they can see what is happening!

GJensen, I have had times also where I awaken from sleep and sit right up gasping for air. It looks exactly like sleep apnea to me but I had a sleep study done and, of course, it did not occur. I was given an Ativan to help me go to sleep for the study. I wish now that I had not taken it as I think it skewed the test. I, like you, seem to have things happen in phases and I wonder if it has to be a right time, right place test to get positive results on certain tests. Frustrating. They do measure breathing during the sleep study so they may be able to pick up a problem like what you are describing I believe. Good luck and let us know!

It does make a difference for me AndyBones. I am considering Florinef as well. So sensitive to meds though. Hard to find the right combo.

Oh my goodness. What a riot! Thanks so much for sharing!

Fascinating. I had to sit on the floor while making toast because I was feeling oxygen deprived as you describe. I have 40% blood pooling when sitting up (not even standing yet). Ergo, does that mean it may be pooling in the bottom of my lungs (where we take in less ventilated oxygen) or perhaps it is not getting to the lungs? Either way it would form an imbalance of ventilation/perfusion I suppose. I do notice that midodrine helps me for about 3 hours and then it will start happening again on the bad days. I feel like a wind up toy....add midodrine and watch her go! Lol

I have battled very sharp pains and last year ended up in the hospital when they removed my appendix. It turned out they found endometriosis attached to my appendix and a few other places. I also had air in the lining of my intestines (fairly rare) a few years back that caused severe pain. I am thinking if we have one autoimmune problem (meaning autoimmune Pots is my guess for myself) , we are prone to others like endometriosis, asthma,, etc. . Ovarian cysts are also a prob sometimes for me. I used to not be able to stand anything tight on waist but it is improving so maybe a binder would be helpful. Severe pain should always be checked in my opinion.

Do you think it might have anything to do with restless leg syndrome? I have that but my legs feel caffeined at night. I know it can occur in different degrees and it can last all day for some folks. I take Gabapentin lowwwww dose to help that and it works for me. I know some folks don't do well on that though. I am equally curious about this topic as I have a muscle in my back that freaks rather violently when it is relaxed....ergo I would call it a myoclonic jerk or axial myoclonus. This does get worse with anxiety but it has been with me every night for a year and a half sooooooo I can't say it is purely anxiety related. Let us know what the docs say!

It is hard to know what they are truly thinking without asking them but it truly sounds like maybe their opinion is not something to request as their actions speak loudly as people that are "energy drainers" and certainly not "energy givers". I don't have any time or energy to give to people like this anymore. I agree that we need to spend our time with healing actions and friends. I have a friend who almost cried when I made her a birthday cake because she said she knew how much effort it took for me to make it for her. That is a friend! I agree with GJenson. We can't waste any energy on negative people. I only have an inch of energy everyday. I will choose to use that inch to heal and give to those who who deserve goodness.

My hubby has not been as understanding as I would wish. I kept hoping for this but I may not get it so I have really had to rely elsewhere for support. I think it has made me stronger actually because I have had to be my own advocate and this has certainly shown me who is going to stick by me in the long run. I try not to judge the folks that drop off as they may have their own "stuff". It still ***** tho not to have a partner who is right there in the thick of things with ya. I did find that our lack of understanding is sometimes a lack of proper communication and/ or miscommunications. It did help when he saw a cardiologist with me who explained POTS and said I am like a Ferrari when it comes to heart rate upon standing (hahaha) and I should be a minivan instead.

Hi AnaBanana. I have struggled with nausea as well. I do take Zofran which helps me a bit. It seems to help me more when the nausea isn't too severe. I also find it very helpful to stay away from big meals (not a prob when nauseous) and big carbs. I suspect gastro paresis but haven't had the test for this because I can't stand the thought of another Dr. Appt. . Lol I have noticed some folks went gluten free which helped and I am considering this as well. I feel for you!

So sorry you feel so bad Freaked. Can you call your doc if you can't get in there physically?

Hi Looneymom, no I haven't been to an immunologist or an infectious disease doctor. My neurologist said he tested me for Lyme but I think he was thinking of someone else. Lol I have had ALOT of tests though. Vit D was low but now ok, skin biopsy (no small fiber neuropathy) , some antibody testing, MRI (not upright MRI though) , TST , qSart, etc. etc. At this point, I think my docs want to rubber stamp me with idiopathic POTS and see me every three months for medication adjustments. I feel differently, though, and I feel there is something else going on. I am wondering if I should just wait until something else (symptom) pops up or until the Ataxia gets so bad that they can't ignore it really anymore. Now that I write that it sounds like a negative attitude on my part but I don't understand how to advocate properly for myself. My hubby isn't able to do this for me either. Hmmmmm

His is related to his heart as he has atrial Fib. I don't know what you are feeling of course. I remember when I first got very dizzy my primary care doc kept questioning me to figure out what to look at. His main question was whether I was lightheaded or dizzy. I couldn't figure out what he was asking me but then he asked if the room was moving. I think vertigo is when the room moves and lightheaded is when you just feel like you are about to pass out. Brain zaps are like an electrical feeling in my head (happened when getting off Effexor for me). I sure hope you feel better!

I didn't know you could do a stress test with a stationary bike. Cool.

Corina....yes! It is like my brain doesn't know where to put my feet! You put that so perfectly. I also walk like a horse where my feet clomp. Oh my. Loonymom....I looked up all your great articles. I don't think I have any type of encephalitis as I had a brain MRI which showed white matter lesions but not any encephalitis. I would think they would have seen that, right? What is weird also is that it happens when I lay on a hard floor to do a meditation class that I go to. After I get up, same thing. Not after laying in bed though. Weird. Maybe it is a lack of oxygen and/ or blood to the brain.

Hi IceLizard. I see on drugs.com that unusual cold and shivering are listed as side effects of Moviprep. But, that being said, I wouldn't think it would last that long? Good idea to check it out with the doc. They may know what exactly causes that side effect re electrolytes, interactions and/ or if it truly is a side effect or an interaction or something else altogether. Good luck! Let us know how it goes.

My husband. Hahahaha! Actually, I just asked him and he said he read it as a heart term on the Internet. I googled it and can't find it anywhere. But, it certainly can feel like that so maybe he is right, eh?