JimL

3 hours ago, WinterSown said:

Perhaps he wants you to go back to whomever prescribed all those drugs. 

A three-monther is your every-three-months appointment with your doctor.  

 

 

My PCP looks at yearly's. I see him more often than that, but it's at my insistance or direction. 

1 hour ago, jklass44 said:

I agree - there are many doctors of all different specialities that say POTS is psychosomatic. It sucks. I see a therapist for other reasons too, but I don’t think that should have been the point. Whether you’re dealing with something physical, emotional, mental, etc., we deserve to be treated fairly and if something isn’t working or clicking with a doctor/specialist, it is our right to move on and find someone who will work WITH US to help us through our symptoms. 

Best wishes!!

I agree. I just have my doubts in finding that. 

Do you have sleep apnea at all?

I used to take benedryl when I couldn't get to sleep. Now I fall asleep pretty easily. Thing for me is not to try to go to sleep too early unless I am really tired. It's like I can't tell myself to sleep, but if I try to stay up past 10, I go to sleep. It's like reverse psychology. My problem is staying asleep. I tend to wake up at 3am for no reason and then it takes an hour or more to get back to sleep. I use a CPAP too. Before that, I would start to nod off when driving in the afternoon. Not good. CPAP cured that tired feeling during the day, but I haven't gotten 8 hours straight in a long time. Years maybe. 

3 hours ago, bombsh3ll said:

It is a hard condition to treat but we all need and deserve someone to work with us, follow up and try different things. There ARE many treatments out there, which work for SOME people, and you won't know unless you have the opportunity to try them. 

I have been completely on my own with it as well since 2014 - I am a doctor (GP) in the UK but had to give up work due to severe POTS. I have been lucky enough to access most of the available treatments however none has helped although licorice root was absolutely miraculous for about a year until the effects wore off. 

Keeping moving as much as you can helps - I cannot exercise upright but use a recumbent bike. Also hydration, I use Trioral ORS sachets, but stopped consuming large quantities of salt as is commonly advised, as it never helped me & there is no scientific evidence chronic salt loading produces lasting increases in plasma volume - it is simply urinated out, tastes vile, suppresses the renin-aldosterone axis and causes damage to blood vessels over the long term. 

I hope you manage to see someone worthwhile for ongoing care, even if they don't know much about dysautonomia to begin with, being willing to learn and work with you are what matters. 

B x

Medicine has suffered in the last 10 years here. When I lived in NY, I had two good internists in my life. THe first went to NYU and did his residency at Bellvue. He was a scientist that liked a good challenge as was the second guy. When I moved to Iowa I had a decent one there too, young and knowledgeable. In AZ, it was like going in the twilight zone. I have to wonder if they are used to treating old people and just figure they are in god's waiting room, why bother which affects work ethic. If I don't get answers, I will make an appointment with the doc I had in Iowa and fly back. He takes Blue Cross and is listed in the find a doctor website at BCBS. Americans like to bust on single payer, but it's getting down that road here and we pay for it as a choice in some cases. 

6 hours ago, MeganMN said:

The Electrophysiologist that I saw said something almost exactly the same. He said I should go see a different Specialist. Felt like he just wanted me to go away.  

Sucks, doesn't it? I don't know who would be next. 

18 hours ago, jklass44 said:

The very first cardiologist I saw treated me very similar to how you describe... He said my symptoms were just something I’d have to live with and that he recommended I see a therapist. (I was barely able to stand my flares were so bad!) Didn’t offer any tips or suggestions to help manage my symptoms, no talk of lifestyle changes or medications. He literally got up from his chair, walked over to the door and opened it and said good luck. In my opinion, any type of doctor should never treat a patient this way... I think it’s extremely disrespectful. I’m sorry you had to experience this!! If you’re not happy with him, find somebody else, especially if this doctor wasn’t willing to provide suggestions or medications or even offer a follow up appointment!

He wasn't disrespectful per se, but I didn't get many answers and nothing worth much. I already see a therapist for something else, so that's covered. My therapist has treated people who had pots and he said that even among therapists there is a theme that it's psychosomatic. He doesn't think that at all. He's been supportive. 

18 hours ago, WinterSown said:

You need help controlling your symptoms. Why doesn't he want to see you anymore? Haven't you been prescribed anything yet? You don't have a three-monther coming up?

 

 

 

No meds other than what I am already taking. Synthroid, metoprolol, lisinopril, esomeprosole and sucraflate. He said he doesn't need to see me. Thats one thing that threw me off that led me to believe in the brush off. What's a 3 monther?

54 minutes ago, WinterSown said:

I think the doctor gave you fine advice and he told you the truth. 

 

thing is, he said he doesn't have to see me anymore, that's it. I felt like he said, this is my advice, you're on your own. I just don't know what to make of doctor's reactions. Maybe I am reading into it too much, but I feel like they're missing something. Maybe it's triggering my own BS and I'll have to work on that, but the more doctors I go to, the slower an understanding and resolution is. My comments about fictitious etc are my perception of what some doctors may think of it. I've seen the same thing with CFS, fibromyalgia, etc. I've just become disgusted with the medical community after going through this. In some ways, they are different or better that what I do with computers. They have a bit more education and get paid better. Some of us have been raised to put them on a pedastal. Well, something things we were taught were wrong...If I was 30 years younger, I'd go to medical school just to figure this out.

Went to EP Cardiologist Yesterday and I am still wondering what happened. They did an EKG, BP/O2/HR listened to my heard, read the report. He then goes on to tell me that these things are hard to treat and there's not much that works well. it depends on the underlying cause. Ok. I went through my history and he says to get the GI stuff looked at as GI problems can cause a vasovagal response that causes these problems and to get my thyroid checked too. He talks about some conference he went to in 2015 and how they said the three most important things were more salt, water and exercise as the desire to lay down and doing so will cause deconditioning. He said it's like a cardiovascular migraine. So I asked him, are you saying this is all in my head? He says no, that if he thought it was, he'd send me to a psychiatrist. He then says that my heart is fine, this won't kill me, I just have to find a way to live with it. I said, what if it makes things such that it gets in the way of work? Well, that happens and some people can't work anymore. Ok. I am starting to think I am being shuffled to specialists and there's nothing any of them can or will do. It's like a form of gaslighting. Or is it like this episode of Seinfeld:

At this point, I don't know what to do. This doctor wasn't old. Maybe 40-45 at most. If 1-3 million americans have this, why is it treated as such a rare and in some cases, fictitious disorder?

I'm in AZ too, north of you. I am new to this and finding anyone that takes it seriously is a problem. 

Sorry to hear about the 5-HIAA test. My basic tests come back normal. The test you took is very specific. Those tumors are very small and can be missed on CT. usually they do a combination of scans, like CT with contrast at PET scan. So what led him to order the 5-HIAA test? My doctors seem to be reluctant to order anything. I actually paid out of pocket for Sedimentation Rate-Westergren, Immunoglobulins, Quantitative, IgA, IgG, IgM Blood, C-Reactive Protein (CRP), High Sensitivity (Cardia), Tumor Necrosis Factor- Alpha, Antinuclear Antibodies (ANA) Direct, CBC/Chemistry Profile) and it came back normal range. This was back in december though. A neurotransmitter panel is somewhat expensive. A few hundred bucks probably. I've asked about PNS and carcinoid and I get the you're crazy look. 

9 hours ago, Meemee said:

Hi! I am an 18 year old female that has recently been diagnosed with POTs. I am really struggling with a lot of the symptoms, but the one that is actually effecting me the most is temperature regulation. When I am outside i am freezing and my whole body is cold, but when I try and warm up my body overheats and stays that was for hours even when I try to cool down again. I just tried to warm up after being outside by putting a water bottle to my head, but now my entire head is burning up and my face is bright red, and I cant cool down. It has been an hour since. I also struggle to sweat. I am really scared at the thought of my body temperature fluctuating to dangerous levels. I was wondering if anyone else is experiencing this, and also how they deal with it? Is there any medication that can help? Can I come to any harm from overheating easily? Any help or advice will be greatly appreciated, as I am really terrified at the moment from this illness.

Thank you!!

Do the blood vessels in your head bulge? I get the redness too and the veins in my forehead pop out. 

2 hours ago, Meemee said:

Yes I really struggle when I cook dinner too! 

 

 

 

 

I guess it's not unusual for people with POTS? I have so much I have to do. I am a hands on person and take care of all the hands on stuff with the house and cars and then there is work. My boss is letting me work from home until surgery later this month for cervical fusion, but after that, if I haven't learned how to deal with this better, I have problems. 

When I wake up, my temp is often 96.8ish. As the day goes on it goes up and if I am up on my feet making dinner, after I eat it can be 99 or a little more, but it goes down after dinner if I lay down. When I heat up at dinner, I feel really flush. Tonight I took my vitals and it was 122/78/114bpm/99.3F. That was sitting down. When I wake up, normally my heart rate is 60-68 and bp 110/70. This stuff is just nuts. 

You go to Arkansas from Wisconsin for a doctor? Wow, I can understand it though. If you find someone good, stick with them. 

11 hours ago, StayAtHomeMom said:

What makes me wonder is the fact that I was the first to get it and I seem to be passing it on to my boys (statically it should be less likely). Does everyone have hyperPOTS like you?

Gotta wonder what all of you may have been exposed to that may have caused this. If you didn't have it as a kid and no one in your family did, I'd look there. 

22 minutes ago, hkmist said:

Thanks for the replies guys!!  I guess one question was did you have a really bad headache after the Myelogram?  Did it find a csf leak for you?  I appreciate all the replies and it seems spinal surgery and pots maybe closely linked??

I had a myelogram because of problems with my neck and they did it prior to my first fusion. I had bad disks, stenosis and bone spurs that required fusion of C4-6 in 2012. I have to get C2-4 done this month. When they did my L4-5 this past Halloween, a bone spur had punctured my CSF. The surgeon repaired it, but I have to wonder. The day after the surgery I had a headache that I would have put a gun in my mouth to stop. It happened when the PT folks sat me up. They had to put me head low and turn the lights off. I had the shades pulled and no TV. It was totally F'd. It went away in a few hours, but it left an impression on me. It was from the leak. 

30 minutes ago, jklass44 said:

I didn’t know thigh pain could be caused by low potassium. Do you have to take supplements?

Potassium and Magnesium too can affect muscles. It can be corrected through diet. Greens tend to have magnesium, spinach a decent amount. Potatoes, bananas, oranges have potassium. I think pork does too. That said, neuropathy and ridiculopathy are usually nerve related. Bad disks, bone spurs and stenosis are often causes. 

22 hours ago, Derek1987 said:

I've gained like 10 pounds since being out of work in September. Most of the time I feel like garbage and don't feel like doing anything. But I want to still try and be healthy. I'm not sure if I can. I'm sure laying down a lot doesn't help circulation either. Can a vibrating massage chair or something improve circulation? 

Any tips on this stuff? 

http://www.dysautonomiainternational.org/page.php?ID=43

I had a myelogram when I had my neck fused the first time. Not sure what you want to know about it, BUT, funny you should ask or say, I had spine surgery around Halloween and came down with POTS around christmas. I has a CSF leak from a bone spur they found during surgery and repaired. That said, I saw this video: 

And and I have to wonder if this is the cause. FWIW, I have to get more cervical fusion at C2-4 this month. I had C4-6 done in 2012 and L4-5 done last year. 

1 hour ago, StayAtHomeMom said:

For instance mine started when I was 30. A friend of mine discovered he had diabetes and high blood pressure at 30. My husband started have cholesterol and blood pressure problems at 35. It is just those mile markers of age; 18, 21,25,30,35,40...

I just turned 57, so no. 

23 minutes ago, StayAtHomeMom said:

Wow! Congrats on the weight-loss. Out of curiosity did you hit a mile-marker age when your problems started?

I don't know what mile marker age is. 

30 minutes ago, StayAtHomeMom said:

A friend of mine had a doctor tell her that the bone bruising she has had for 2 years (after a fall) was because she was fat. She is really heavy and she has had doctors walk in, not even introduce themselves and talk about her weight. She walks out without saying a word. 

Compassion is a tough one for a lot of doctors. My wife says with the spate of problems I've been having she'd rather me be fat. Here is a before and almost after. I've dropped another 20lbs from that thinner shot. 

38 minutes ago, StayAtHomeMom said:

Don't know. She has so many things wrong and the diagnosises don't sit well with me. The big thing is she has MS. She also has celiac (blood test positive), small fiber Neuropathy (biopsy confirmed) and gastroparesis (test confirmed). So autonomic dysfunction wouldn't be out of the picture I guess, but she has never been diagnosised with it. When she lived near me they treated her like a hyperchondriac, since moving out of state she has gotten a lot of her diagnosises, but I still don't think they have found exactly what is wrong. I don't think she cares a whole lot at this point though, as long as she can function. 

I hate when doctors blame everything on anxiety or even being fat. A lot of doctors dismiss female's symptoms. Not sure why that is, but it always made me feel like I was crazy. 

I didn't have all these problems when I was fat. Now that I've lost the weight I have problems. Go figure. 

Time of day seems to matter for me. As the day wears on,  the symptoms will come on faster if I am up intermittantly. I try not to be up on two feet more than 30 minutes and try to do less and often have to. if I lay down, my heart goes back to normal.