toomanyproblems

Do you know what type of POTS you have? Although not specifically type diagnosed, I'm pretty positive I have hyperadrenergic POTS. I've had trouble with chest pains in the past that I suspect are from vasospasm but no one I've seen yet has been knowledgeable enough about it to diagnose it as such. I'm at the point of simply wanting something to help. The only thing that has helped is clonidine, which I assume helps me by tamping down some of my sympathetic nervous system response. Clonidine is a med that lowers BP though, and midodrine raises it so I don't know if that would fit in with your regimen. My BP is high not low and goes up upon standing, along with my HR. I'm sorry I can't answer your question more specifically. Good luck finding someone who can help.

I have POTS and EDS. The addition of Florinef, a mineralocorticoid class of steroid, can help you hold the salt and water. I've also had Addison's for 30 years. I had some of the same symptoms you describe from that as well. I think I had POTS for years before it was diagnosed because of the overlapping symptoms. Let's just say I've passed out plenty over the years. I was already taking Florinef and they just thought I needed more. It worked for a while and my POTS symptoms waxed and waned for years. Finally, it became full blown and it was obviously POTS as well as Addison's. A strange combination and difficult puzzle. My endocrinologist sees patients who are eventually diagnosed with POTS to rule out Addison's fairly frequently. They rarely have both but I did. Just a thought but keep it in mind if you don't get relief or have other symptoms POTS can't explain because Addison's can be hard to diagnose. Good luck.

Experiences? Which is best in your opinion? Most importantly, were you helped to function better? I'm being referred to hospice for evaluation. This is a big deal now folks. I've failed all normal treatments and have been seen by multiple qualified specialists. My docs have asked me time and time again to go to one of these two places for my dysautonomia. My docs say I'm too complex and over their head for any further treatment. I also have a lot of other related and unrelated health problems that add complexity. I live in middle NC and the distance is roughly the same to either place. I really don't have the support or feel that I'm strong enough to make the trip and handle all the testing. I've also heard it may be around 100k not paid for by insurance and you're there a week. I've also heard people have just been re-tested for things they've already been tested for and basically re-diagnosed (or even un-diagnosed). And worst of all, I've heard that after all that nothing was done to actually help them function better in the future. Any positive stories? So this is the end of the line for me, folks. I either decide based on what I hear positive from the people here or I give up for good. I'm not asking for support in this particular post. I just want to hear opinions and experiences. Thanks for any help. ETA a little more information: I'm a 63 year old female. Previously very active. Main current problems include: POTS, RSD/CRPS type 1, gastroparesis, Elhers-Danlos syndrome, small fiber neuropathy, polyglandular autoimmune disease type II (including, Addison's disease, thyroiditis, early ovarian failure, celiac, possibly myasthenia gravis and a few others), undifferentiated connective tissue disease. Current meds: Predisone, hydrocortisone, florinef, synthroid, T3, gabapententin, mestinon. (I've discontinued everything else since I'm not absorbing my meds well.)

This has happened to me several times I think. Once, I had passed out for several minutes two or three times trying to make it back to my bedroom from the kitchen. In those episodes, I knew I was losing consciousness and sunk to the floor for a while. I have lots of experience with this. But then after lying on the floor for a few minutes the last time, I got up and tried to make it back to my bedroom. I apparently lost consciousness while walking and made it a couple of steps at least before I ran into a small table and hit my head hard on the wall. I woke up on the floor. I have no recall of getting ready to pass out that time. Just walking, felt weak and then woke up on the floor. Usually there is a period of time before I lose consciousness but not always. The last episode of these four I just described sounds similar to yours. Is this what you mean?

Do you have Ehlers-Danlos syndrome?

Could you please expand on what you consider complete rest and for how many years? I'm about 90% bed bound at this point and feel like I'm just getting steadily worse. I do have some other bad problems but I feel like the dysautonomia from the POTS is limiting me more than anything else. I've probably had POTS for at least ten years but up until four years ago, had relapsing and remitting symptoms for years. I was hoping I could have some kind of remission again after these past four years of consistently worsening problems. I hope you get enough rest and go back into remission again.

Hi Sarah, Thank you for asking about me. I haven't had any more seizures or blacking out since I posted but my POTS symptoms are through the roof. I'm trying to stay better hydrated to avoid the seizures. This is hard however since I have no appetite and tend to not drink when I don't eat. I have gastroparesis and only have liquids or blenderized meals but I'm having a hard time forcing either. I'm losing weight since the election and I'm already thin. The possibility of not having health care insurance is a huge stressor for me. I am on tranquilizers and prozac since the election. They are helping some. I'm still here at least.

Thank you all. I passed out three times yesterday for long minutes at a time. I don't know why. It was when I stood up as usual. as I said, I used do this all the time. It had become infrequent but now has started happening again. I just want to huddle up in a ball and let the world go by until things get better.

Hi Sara, Polycythemia means simply too many cells. It's normally too many red cells that your body is making but can also include other cell lines such a white cells and platelets. My white cells are usually elevated too. PANs, I'm completely alone now. If something bad happens to me when I pass out or have a seizure I guess that is just that. I used to pass out all the time. Then it got better, now I'm passing out again. The seizure, along with the election results, has triggered a severe depression in me. I've never been this depressed before. I fear I will lose my health care among other things. So many bad things have piled up on me over the last few years. This was kind of the last straw.

Thanks to all for your replies. TCP, I do have EDS and have had a brain MRI recently to check for Chiari Malformation. They didn't note it but it was lying down not sitting up, which some feel detects it better. Sarah, your description sounds similar to mine. When I stood up to get out of the car I was already extremely dizzy. As soon as I stood up the best way for me to describe what happened was it was as disorienting as being hit with a baseball bat but without the pain. It was like something popped in my head and I saw things all scrambled up like in fractals. This extreme visual disturbance seemed like something in my brain, not just my eyes. It continued when I sat back down but resolved within five minutes when I was able to lie down. I did not lose consciousness that I know of but I might have. I was very disoriented and don't even know what all happened. It just felt very wrong and different from anything that had ever happened to me. (And a lot has happened to me with all my problems). My hemoglobin is always above 15g. I have had a mild polycythemia for at least 10 years. No one knows why and I don't either (hematology was my specialty area in both clinical and academic medicine). It does not appear to be a hydration issue. My BP and pulse are both normally elevated when I stand. However, a couple of months ago I passed out several times in a row for minutes at a time. When I made it back to the bed my BP was 87/48 and my pulse was 48. I have no idea what it must've been when I passed out over and over when I tried to stand but I imagine my BP was low. Both my pulse and BP can and will go all over the chart from way too low to way too high. I did measure both when I was able this incident I'm describing and they were fairly normal lying down. My neurologist also told me it was probably a pots related perfusion issue in my brain. I will have to remember to keep my hydration up. I try but sometimes I don't realize I'm too dehydrated. Again, I really appreciate your responses. This is information that's hard to get elsewhere. I'm going to assume this episode was caused by a hydration issue, made worse by my pre-existing polycythemia.

Last week I had a seizure-like incident after I got back from voting. My neurologist said it was probably related to my pots since it happened when I stood up. She said lack of perfusion to my brain probably caused it to go haywire. I was highly stressed. She said to try to avoid the stressful situations that caused it. I'm highly stressed now and have increased my gabapentin dose. Has anyone else experienced a seizure-like event (not a grand mal seizure but properties of a seizure) related to their pots symptoms?

I have POTS, CRPS type 1, gastroparesis and EDS. I also have an endocrine syndrome called polyglandular autoimmune disease type II. My endocrine diseases from that syndrome are Addison's, thyroiditis, early ovarian failure, celiac, and a few more. I also have a rheumatological disease called undifferentiated connective tissue disease which is best described as something between lupus and rheumatoid arthritis that won't declare itself one or the other. I have symptoms from each. If you have CRPS, it's apparently not uncommon to also have EDS, gastroparesis and POTS. My specialists are all wanting me to go to Cleveland clinic for the POTS, which I'm very symptomatic from. I'm interested in how your trip goes. That trip may be in my future if I'm strong enough and can get support to help me do the trip. Your eating problems may be coming from gastroparesis. Mine has gotten pretty bad. They tried to put me on a feeding tube but I'm managing right now with liquids and blenderized food from my Vitamix. Most people with gastroparesis don't need a feeding tube but you may have to modify your eating quite a bit. I find this very difficult. I'm having some tests done next month by a leading gastroparesis specialist. They're doing an EGG and a breath test for small intestinal bowel overgrowth (SIBO), which I'm sure I have as do most gastroparesis patients. That could be causing the bloating and some of your other problems. I'm hoping they can manage the SIBO better once I get the results and a solid plan but it will be a constant battle. After the EGG results they'll decide if they want to try botox on my pyloric sphincter as a test to see if a ballon stretch type procedure will let food out since my stomach won't empty. I'm going next Tues to start a three weeks in a row, once a week, very high dose ketamine infusion (semi coma) to try to control the CRPS symptoms. I've had five high dose ketamine treatments over the past year and a half and it helps for a while. I hope the three in a row will give me some better time for longer. It only really helps the CRPS pain and not the other problems though. Finally, I'm going to be biopsied for a small fiber neuropathy (also common in these conditions) and they may try IVIG on me if the ketamine doesn't work well enough. There are lots of reasons why I would like to try IVIG. I'm going to push for that anyway. Anyway, sorry for rambling. But yes, I have POTS and CRPS. You might want to look into gastroparesis.

What antibiotics did you take?

Has the IVIG you've been getting helped? If so how?

Technical difficulties on the forum made me stay away and I forgot this post. Thank you, yogini. I have tried some combinations of meds with no help. I will continue to try others as my docs and I decide if they might be useful. Also I'm not absorbing meds well so that's a problem. However, the clonidine did help tamp down some of the adrenaline response; it just made my RDS leg swell way too much. Like five or six lbs more fluid which was very uncomfortable. I've gotten to the stage with so many problems that what helps one thing makes another worse. So I guess I can take the clonidine when I feel like I'm spinning off the planet, but not on a daily basis. Most of all reading, "Once you get gastro in control, it can often help your POTS" really hit a note. I think this is true, I just can't get there. I'm eating different diets now to try to figure out the best ways to manage the gastroparesis (I have searched through old posts). Main current problems include: POTS, RSD/CRPS type 1, gastroparesis, Elhers-Danlos syndrome, polyglandular autoimmune disease type II (including, Addison's disease, thyroiditis, early ovarian failure, celiac, possibly myasthenia gravis and a few others), undifferentiated connective tissue disease. Current meds: Predisone, hydrocortisone, florinef, synthroid, T3, gabapententin. (I've discontinued everything else since I'm not absorbing my meds well.)

I'm unfortunately knowledgeable about adrenal problems from both a personal and academic standpoint. I don't think you can try to formulate a plan until you have the labs from the thyroid and cortisol levels back. Please update us when you get them! I hope you daughter is feeling better!

Yes, I understand exactly what you mean. I never feel sleepy like I used to even when I'm so groggy I can't walk straight. If I force myself to lie down and do yoga breathing I can sometimes go to sleep but for some reason it's hard for me to settle and do that. I guess I'm just not used to not feeling the way I expect to feel when I used to go to sleep. Unfortunately I don't have anyone to rub my back so I'll have to figure out ways to do relax by myself. Thanks. I don't know why this is getting worse now. I've had POTS symptoms for at least ten years relapsing and remitting, and constant for the last three and a half years.

I actually tried Clonidine yesterday and today and it did help! I only took 50 micrograms which is half the normal dose. My BP is normally high and even higher when I stand along with my high HR and it helped both some. It also helped me not feel so wired and I actually took naps both days with the help of gabapentin. Sleep is healing! I'm at a point where things that help one problem make others worse, unfortunately. Clonidine helped the POTS stuff but made the swelling and pain worse in my RSD leg. I'll still take that trade off. I'm happy for any relief. I had too many carbs today and that makes swelling and pain worse from the RSD though so I'll try to do better tomorrow. I'm just so restricted in my diet it's hard sometimes. Thanks!

I've been definitively diagnosed with POTS for several years but don't know what type. I'm practically 100% sure it's hyperadrenergic POTS. I can't sleep, I feel wired all the time even though I get to the point where my body won't respond anymore. I'm just exhausted. My heart rate is through the roof whenever I stand up. None of the standard meds has helped. I also have a huge number of other health problems. I can almost feel the adrenaline being dumped into my system and it only seems to be getting worse over time. I'm extremely symptomatic from the POTS. I'm completely miserable from my other problems. Is there anything anybody has found that will help tamp down some of this adrenaline response at least? That would help a lot. I've done research. I have extensive background in clinical and academic laboratory medicine and have a PhD in biochemistry. I can't find anything to help that I haven't already tried. To make things worse, I also have grade 3 (severe) gastroparesis and am not digesting oral meds well, if at all. I'm on a liquid diet and may be heading for a feeding tube or TPN. As my problems continue to accumulate, I feel like I'm circling the drain. Any help appreciated. I'm at my wit's end. Main current problems include: POTS, RSD/CRPS type 1, gastroparesis, Elhers-Danlos syndrome, polyglandular autoimmune disease type II (including, Addison's disease, thyroiditis, early ovarian failure, celiac, possibly myasthenia gravis and a few others), undifferentiated connective tissue disease. Current meds: Predisone, hydrocortisone, florinef, synthroid, T3, gabapententin. (I've discontinued everything else since I'm not absorbing my meds well.)

I've been on florinef, as well as replacement glucocorticosteroid for many years due to having Addison's. In 2007 I suddenly developed what I now believe to be severe POTS symptoms that included passing out, once while I was driving. After unsuccessfully trying to find out what the underlying problem was, an electrolyte panel finally showed a low sodium. My PCP decided to up my florinef dose, which helped all of the POTS symptoms I was having, including the syncope. A POTS diagnosis was never entertained at that time. It was assumed my mineralocorticoid levels weren't sufficiently replaced for my Addison's. I had waxing and waning of POTS symptoms over the next few years, even though it was never as bad as the symptoms in 2007. Then the day I went to divorce court in 2013, my right ankle swelled. Quite abruptly on this one day, I also started having severe POTS symptoms and lost about 25 lbs over the next two months. My entire right leg and upper pelvic/lower abdomen area swelled significantly within a few months and I was eventually diagnosed with RSD/CRPS and POTS. My POTS symptoms were quite severe and have never improved much since then no matter what drugs I try, increasing florinef included. I have since also been diagnosed with Ehlers-Danlos syndrome and gastroparesis. So yes, I suppose I'm someone for whom increased doses of florinef worked somewhat for a while but eventually failed to control my POTS symptoms. I can't say it's negatively affected my POTS symptoms.

Good luck tomorrow. I'll be thinking of you.

Home Health Care has been coming out two or three times a week since I was released from the hospital three weeks ago. Along the way one of them suggested to my PCP that an overnight measure of my pulse ox would be good since I have SOB and chest pain, along with my other POTS symptoms. So a currier dropped one off last Fri evening and picked it back up Sat AM I got the results back today and it showed my O2 drops down below normal during the night for 10-15 minutes periods. Mostly these low values were in the 80s but one was as low as 58%. I was referred to new cardiologist. They were supposed to get me in pretty quick. I went to one cardiologist for chest pain exactly two years ago, who found an abnormal ECG but a normal ECHO. Also of note, I did have that over night hooked up to six gazillion wires thing 4.5 years ago and it did not show sleep apnea or any other abnormality. My ex-husband (of 32 years), who is a physician, swears I don't have obstructive sleep apnea. My question is, for those of you who've had low O2 readings at night, and it wasn't caused by obstructive sleep apnea, what did they do about it? Like would they just run some oxygen to me over night? Is anybody here getting that?

Thanks for all your responses and suggestions. I have a number of food intolerances that make many of your suggestions or the standard GP diet suggestions difficult. I actually have celiac, not just gluten sensitivity that many have, so no wheat or wheat products or even oatmeal. I try to avoid grains as much as possible. I'm also lactose intolerant. I do drink lactaid, which is a lactose free milk. There's a gluten like protein in the casein in milk but I take a digestive enzyme to block it. So I do drink milk. I'm violently allergic to peanuts and allergic to soy. That knocks a bunch of options out right there. Any kind of fiber or too much sugar has not worked. I've found some sources of protein I can grind up with rice or potato and make liquid with clear chicken broth. I was in the hospital for 12 days and the commercial liquid diets they had made me way worse. They actually scheduled and prepped me for a feeding tube surgery but I refused. Through digestive enzymes and very select probiotics (yogurt and Kefir have histamine producing probiotics that make me worse), and very clean, select foods (with emphasis on protein) ground up unto a slurry, I'm getting control of the diarrhea and getting some strength back. However, I'm still in an experimental stage. I don't know if I'm absorbing enough protein to keep me off a feeding tube yet. I've got another week to try to start an upward trend. I bought a refurbished Vitamix from Amazon (still expensive!) so I could remove the fiber from fruits and vegetables and add the juice to my protein/complex carbohydrate slurry that I'm tolerating now for better balance and nutrition. I hope this helps. I was on Reglan for weeks but started trembling and I also didn't feel it was helping my stomach empty so I stopped talking it a couple of days ago. It did help the nausea but there are way less scary drugs I can take the help with the nausea. My GI doc didn't intend to keep me on the Reglan for long anyway. Home Health Care is coming this afternoon and will report back what, if anything he wants to replace the Reglan with. My stomach never feels empty no matter how long I go without eating. When I had my colonoscopy prep in the hospital I hadn't eaten any solid food in at least three weeks and there was still rotting food in there from weeks before. Sorry for the TMI. I just thought I'd ask about the baby food. I need something simple for the future in case I get too weak to make something myself. I've had people here 24/7, along with frequent visits from HHC since I got out of the hospital but I live by myself and eventually I'll have to work alternate simple plans out. I find it very east to just stop eating. Thanks again. Looks like baby food isn't worth it unless I just can't make anything myself and even then limited in what I can eat.

This may be a stupid question but a friend asked me and I didn't know if anyone did this. I was recently hospitalized for severe gastroparesis resulting from my POTS and/or CRPS. I'm still having trouble getting stomach emptying and my protein up in order to avoid a feeding tube. I will say I'm not doing well on any processed foods like Boost or Ensure. I was used to eating pretty clean prior to this so that may be the reason. I'm not sure how processed baby food is. Has anyone here tried it? If so, what worked for you? (Please don't say only the peas :/ )

Restorative yoga is really good for POTS.A favorite of mine.