toomanyproblems

I really don't know if I'll have to stay on IVs but I expect that's what they're thinking if they're talking hospice. If my bowel isn't working at all and I can't digest food then a feeding tube bypassing my stomach that won't empty won't even help I don't think. Plus I'm immunosuppressed from my rheumatological autoimmune disease drugs so the risk of infection with a feeding tube is very high. It's hard to get enough nutrition for long on IVs alone. The prep can cause electrolyte imbalances for anybody but my electrolytes were way off before the prep started. That's why I was already in the hospital. Weeks of diarrhea I'm sure. The Addison's can cause problems with electrolyte control too. No internal regulation there at all. It's up to me to try to keep a lot of my autoimmune endocrine problems sorted out by taking meds to replace them in the amounts needed and it's a real challenge with some of them affecting others in an intricate balance. My med doses change each day depending on what I'm doing, even the weather like how hot it is, and whatever else is going on. Your body normally does these adjustments seamlessly on its own. Hard to appreciate until you have to guess on how to accomplish that ever changing dynamic balance yourself. When I stopped absorbing oral meds I was stuck with injecting what I could and sublingual meds but that stripped me down to the bare essentials from a lot of meds I was on. I just feel like my whole nervous system, vascular system and immune system is completely broken right now and I'm not sure it's going to get better. I've been lucky to have the medical and scientific background to handle these problems so long on my own. I feel bad writing such a downer post but I think my toomanyproblems has finally caught up with me. I have never used forums to vent so I guess I saved up for a really good one. I'm sorry. Thanks for the well wishes.

I'm in the hospital as I write and have been for days. Things had gotten very bad for me. I had both endoscopy and colonoscopy at the same time under general anesthesia today. I had a gastric emptying study yesterday. I definitely have gastroparesis so my stomach is not emptying as I suspected. It’s from the POTS or the CRPS. Probably pretty far along apparently. They didn’t find colitis or obstruction in the endoscopy or colonoscopy when I was finally ok enough to get there (it was an eventful day before and morning in a really bad way primarily because of the Addison's and partially the POTS). They cut out some polyps which are usually nothing. But the main thing was to take a lot of biopsies so they could see the muscle/nerve problems in my stomach and bowel that move the food along and digest it. There was still decomposing food left in there from three weeks ago when I last ate solid food. I actually feel better without all those toxins in my system but still very weak. I've had uncontrollable diarrhea for weeks and the prep sure didn't help. There is no possible way I could have done this outpatient with the prep at home. I have had a colonoscopy outpatient with prep at home in 2008 but this was a different story. I was in better health at the time although I've had relapsing and remitting POTS since 2007. We won’t know the results of those biopsies for several days but the doctor came in asked me if I wanted to go to a nursing home. I said no I wanted to stay with my dogs so he set me up for home health care nursing to come evaluate me for their service or hospice. They will come within 48 hours of my discharge. They wanted to come as soon as I got home but I said no. So it sounds like this is pretty bad for me right now. The doctor acted like they may not discharge me tomorrow as planned because I’m not in good enough shape. My electrolytes are messed up for one thing and they need to get that straightened out. it’s just not something you can be very far off on and live. So we’ll see how well I am tomorrow but I’m going to push to go home. I’m only on IVs still…no liquids or anything else. Not even water. Most of my meds are now IV or injection because I'm not absorbing oral meds. And I take a lot of meds. I’ll stay that way for now to let things settle down if they will. I don't want to scare people. I do have a lot of other problems like CRPS, Addison's, thyroiditis, rheumatological diseases, etc. etc. Most of you don't have all this. I'm just relaying my experience today. I just hope it's not as grave as they made it sound today. I need to process this all and decide what to do after we get the finals results. I just felt like writing something to some group that might understand. I'm a little shocked.

I have to agree on this. They used wrist monitors when I went to hyperbaric oxygen therapy and even though they always made me put it above my heart, the readings had to be off. I was getting diastolics in the 40s and 50s whereas they're mostly 80s and 90s at home. When it was too low they would repeat with a normal manual upper arm cuff with a stethoscope and get a diastolic at least in the 70s. This happened a lot during the 80 sessions I had, one reading going in and one reading going out so 160 times. Mostly wrong going into the chamber though. I'd never trust a wrist cuff after the number of times it was wrong on me even in a pro's hands.

What kind of food do you eat? They're now saying 80% of our immune system is in our gut. I have a lot of autoimmune diseases, CRPS and POTS and have been studying and working hard to improve my gut heath over the last couple of years. I'm on three immunosuppressive drugs and have been catching "bugs" every time I go out as it seems, even though I go out rarely. You may already be doing all the right things. Just asking. Maybe I'll learn something new.

You're very welcome. I should've added, I definitely have POTS, I just don't know what kind. My drs want me to to go to Cleveland Clinic for a thorough work up but I'm just not strong enough to make the trip, aside from the costs and inconvenience. I wish someone would just draw a standing norepinephrine level. That would be enough diagnostics for me. At this point I'm more about what helps and less about specific diagnosis.

This is not the definitive answer you're looking for but I'm fairly certain I have hyperandronergic pots. I go to qEEG based neuro feedback training and have had three brain mappings done periodically to determine the best settings for my training. The last brain mapping showed I was normal in all emotional aspects but my disease centers in my brain, such as the areas controlling POTS symptoms, were worse. I had to work really hard to become and maintain normal emotional status given my situation but my results do indicate there's a difference between hyper pots and anxiety disorders. I think I could become anxious again, but I believe it would be the result of the disease. It's like a battle I have to keep fighting. I hope that helps.

I have a fitbit charge HR. I only use it to monitor my HR. I can show my physicians my HR charts on my phone. They go back for months. This is very useful for me. Like tomorrow I'm going to a vascular surgeon and I can show him what drugs helped my huge spikes and which didn't. It is not comfortable. I don't really like it but it's providing an invaluable service for me to document my HR patterns for me and my docs.

What is the normal reference range reported for the lab they used for these tests? The general range not standing.

Of all people, I certainly don't blindly believe all that physicians tell me by a long shot. Or science (and I'm a scientist). I work hard all the time to help find answers to or find better ways to be proactive about my health and problems. I'm plenty skeptical. But the body's temperature range at which organisms normally respond to this natural mechanism to fight infection is pretty set in stone. I've had terrible infections where I never ran a fever at all. I had a terrible case of norovirus a few years ago. I was on the floor of the bathroom nearly unconscious for hours and never had a fever. I understand it happens. I just thought I'd mention there's a reason for the physiological fever standards that have nothing to do with our body norms. You all probably already realized that any way.

Going out on a limb that may cause some disagreement here on this subject, but technically, a fever is supposed to be in response to and an effective strategy for helping kill pathogens that invade our bodies such as viruses and bacteria. It really shouldn't matter what your norm is if it's lower than 98.6 F. Your norm is not involved or a factor in this increased temp response to kill viruses and bacteria. Viruses and bacteria are on their own physiological temperature tolerance range, no matter who they're in. So, normal is still 98.6 degrees F. A temp is not considered a true fever in the sense of starting to be effective to kill off pathogens until it reaches about 100 degrees F. This criteria should not vary no matter what your normal temp is. Mine is normally low too, but I don't consider it elevated unless it's elevated to do the things that are effective for the point of a raised temp, which is above 98.6 degrees F. Temps can elevate for all kinds of inflammatory reasons not related to infections but I still don't consider 98 or 99 a temp "for me" just because my norm is usually lower than 98.6. I don't know if doctors just get beat down over this very prevalent lay person concept and give in to stop hearing constant insistence from their patients that their temps are high even in the normal or high normal range, or if they're not thinking of it as the true physiological mechanism it's intended. However, I do know some will say your temp normal matters as people here have reported. I used to have this conversation with my mom all the time. After years, her Dr finally agreed, which she considered a victory in our discussions. She wouldn't even believe my physician ex husband on this matter either, who was an experienced board certified infectious disease control specialist. So, have at me. Just consider my point please.

I'm glad you're HR is better. Alcohol improves my HR spikes too N=3. Do you know if you have hyperandronergic POTS?

I do it for CRPS but it doesn't help my POTS. I can't find any scientific literature to support it as a treatment for POTS. I'm now completing my second session of 40 treatments, so 80 dives total so far. I will say that my dizziness improved considerably the first 40 sessions last winter but hasn't helped much this time.

This is a problem I have frequently. I'm mostly bed bound except getting up for five or ten minutes at a time to do things throughout the day. Most of the time I get dizzy if I stay on my feet longer than ten minutes or so. However, the blurred vision and tunnel vision can occur just from using my eyes reading in bed, or especially playing a video game. Naturally, the vision problem it makes my dizziness worse if I get up but it's not always caused by being on my feet. I usually research the stink out of every symptom since I have the background and a lot of time to do so :/ But I haven't noticed too much out there on tunnel vision except with POTS patients. I just deleted a bunch of scientific conjecture I wrote. I'm more interested in your experiences with tunnel vision and when it's worse. Anybody want to share?

I was diagnosed without TTT. I was sent to a cardiologist for one but he said I didn't need to bother because of my clinical picture and extreme, consistent, well-documented HR changes upon standing. He did an ECG which was abnormal and an echo which was normal. Because POTS is common with CRPS, I sorta got the diagnosis through the back door as it were but it's a firm diagnosis. I just don't know which kind. I suspect that it's hyperandrogentic and that I also have EDS. They want me to go somewhere like Cleveland Clinic for a huge work up but I'm not much feeling like it would be worth it. The neuro I went to today wants to try the simple things first and I'm on board with that if we can get my other specialists to agree.

Digestive enzymes help me with this problem. Though it doesn't seem as bad as what you guys are describing.

I've had a Fitbit Charge HR since mid April. I like it. I mostly use it to follow my HR to see if anything I'm doing works to keep my heart rate from shooting sky high when I stand up and walk around. It can shoot up to my maximal calculated heart rate simply from standing up. Kinda scary. I'm not using it much for exercise at this point because any exercise I do needs to be completely recumbent and other than yoga, or other light exercise, I don't have the right equipment to really start getting in better shape. I try not to stay on my feet for more than ten minutes at a time because eventually my heart rate can't keep up pumping enough blood to my brain so I get dizzy and pass out. Even so, I get up and down all day long so I'm not completely bed bound. I use the sleep function but I think it's one of the weakest features of the Fitbit Charge HR. I'm looking into another one that tracks REM sleep and the other stages more accurately.

The main downside in my case is it's an hour away, I do it three times a week when I'm not too dizzy to drive, and it's expensive. Insurance does cover it for some conditions but not POTS or CRPS. That may be changing in the future. Here's a link that may be helpful: http://www.qeeg.com/qeegfact.html I'll look for actual studies and abstracts when I have more time.

The florinef weight gain is from fluid retention from it holding more salt in your system (instead of excreting it through your kidneys into your urine) in order to increase blood volume. It not like you're gaining fat. If you feel too swollen you can reduce you salt intake, or with drs permission, the florenif. It's not an exact science. Optimal is enough florenif to allow normal salt intake and maintain appropriate salt balance. Blood work may show an increased sodium if one or the other is too much and not balanced correctly.

I used it twice for a while each time. I thought it did a good job with the pain and was a pretty good antidepressant as a bonus. However both times I gained a lot of weight for me. Like 20 lbs in a month or two. I've been thin my whole life. It's the only thing that's ever caused me to gain weight so I blame the Cymbalta. I lost the weight when I stopped taking it. I didn't gain weight on Effexor or gabapentin, which are also known to cause wieght gain in some people. Everybody's different.

Yes.

ETA that's supposed to be qEEG in the subject. Hi all, New to this forum but not to POTS. I've had qEEG brain mapping and have been doing neuro training in the pain and mood centers of my frontal area for the past few months with excellent results. We're about to move to the back of my brain to work on the areas responsible for POTS symptoms, where my brain mapping showed very abnormal tracings. The specialist says she has had mixed results for POTS. Actually, she said something to the effect that she's had hit and miss results. I assume this is due to the heterogeneity of the condition. It either works for your kind of POTS or it doesn't. However, there is some scientific backing for POTS using this technique. At any rate, I'm having this in the next few weeks. I was wondering if any here had tried it and if so what kind of results you saw. Thanks for any help.

This is all good information. I have a lot of autoimmune diseases as well as CRPS and POTS. CRPS and POTS both appear to be heterogeneous conditions but I'd guess mine are autoimmune in nature. These types of studies are good to help backtrack to the original causes. But what I really wish is for us to be able to get to the core of these problems rather than putting bandaids on the abnormalities produced downstream. I could try to shotgun the autoanitbodies with plasmaphoresis but they will just come back. I'll take whatever treatment has reasonable scientific backing for the risk but I just keep thinking the scientific penny will drop all of the sudden on a magic bullet to help all of it at once. Maybe stem cell...

FWIW the best natural souce is from mutton. Sheep meat has way more carnitine than any other food source, including lamb.

I've taken florinef for many years for Addison's. It does help OI. When I first had distinct POTS symptoms in 2007 an increase in florinef stopped the dizzines and passing out. I had a pretty good remission in symptoms for several years. Now playing around with the dose doesn't seem to help. I wouldn't count on it to help pain. It is a steroid but a very weak one compared to, say, predisone. I wouldn't worry about steroid effects. It can cause swelling and possibly high BP if you take more than your body needs. As you increase the dose, you should probably decrease your salt intake since it helps your body hold salt. The ideal would be enough florinef to allow you to just need a normal amount of salt intake.

I'm currently taking Effexor XR 75mg/day. I also have CRPS/RSD and it was prescribed to me for neurogenic pain. I don't know how bad my heart rates were before I started taking it. I got a Fitbit Charge HR in April and my standing heart rates are horrifying. In general I'm less dizzy than I was before I started taking it but I've also been shotgunning a lot of treatments for my CRPS so I can't say for sure it's the Effexor that helped. ETA I don't know what type of POTS I have but I suspect it's hyperandrogenic.