JimL

5 hours ago, Pistol said:

I had to wait one year for my specialist appointment - and he was worth every waiting second!!! Once you finally talk to someone who understands POTS it is such a relief! After 3 years of wasting my time and energy on uninformed and ignorant cardiologists it was a cure in itself to be heard - and understood - by someone who sees people like us every day. Honestly - who in their right mind would CHOOSE to see dysautonomia patients? --- When my sister - who also has POTS - finally ( and by accident ) found a doctor who knew about POTS ( PCP ) she cried all the way home because it was such a validation. And he has made a huge difference in her treatment. I wish you well and hope you will find some answers!! 

I felt like that just talking to his scheduler/assistant. She seemed to know what I was talking about and understood that we/I get the crazy looks. I was apologizing for rambling, but she said that's fine, she understood why. 

17 minutes ago, Peter Charlton said:

I asked my primary GP for a brain scan a year or so back, he laughed, I avoid him now and found one of the Junior GPs to be much more helpful, she said to me, "We really must get you a brain scan", such has never materialised, I am guessing she got laughed at as well, money is more important than peoples health these days it seems in the NHS. Unless my cardiologist is incensed enough to see how wasteful the huge amount of money his department has spent on me, if I am left ill elsewhere, and puts pressure on my GPs, my only hope is with the good Dr Google. 

It's getting that way in the US. Insurance companies have waiting periods for MRI's and CTs. My spinal chord was funny compressed at L4-5 and BCBS had a 2 week waiting period for surgery approval. When money comes first, we lose. 

2 hours ago, KiminOrlando said:

May 21st? Honestly, that is pretty quick. 

My appointments took 6 months.

Glad you found someone. 

I am old school. Before moving to AZ, I never had to wait that long for appointments. In the last 7 years things have changed. Practices are more corporate and they patient to doctor ratios are very high now. In spite of eschewing single payer, americans are drifting towards that kind of wait times and whatnot. 6 months is nuts, but what can you do? After doing the specialist shuffle for the past 7-8 months, I've had enough. 

1 hour ago, Potsies said:

I'm 23 and currently I'm just on Vyvanse for the brain fog, but I've been on it before the pots even started so I don't think it is the medication. I was prescribed Midodrine, but got constant headaches and blurry vision with a sense of detachment, so I am no longer taking it. 

 

Yeah, at 23, your max HR is 197 I think. Still, 157 is too high for what you are doing. Vyvanse can affect blood pressure and the heart too, but that might not be it. Your B12 is on the lower side of normal, but still in the normal range. 

I found Someone that Knows POTS through this website. Dr Todd Levine in Phoenix. I called to setup an appointment and left a VM and they called me back. The person setting the appointment seemed to understand what I am going though and almost instinctively knew the runaround that I have gotten. She said I should have been referred to Dr Levine or a neurologist a while ago. Unfortunately, the closest appointment is May 21st. They put me on a list for cancellations, so we'll see. I am hopeful, for now. 

A couple questions: How old are you? If you're young, maybe 157 beats isn't so much to totally stress you. As far as the ANA goes, could be autoimmune, could be medication. What meds are you on? If you go the DINET website, there are at least a dozen different causes for POTS. A good internist that knows your history will be able to figure out what next. 

5 hours ago, Pistol said:

@toomanyproblems - my MCV has always been high and I always had anemia. My mother used to make me drink beet juice as a child, it's supposed to be good for anemia. Yuck!! My ferritin lst year was 4 but is now up to 21 with iron supplements. @KiminOrlando - I am trying to find this article I read years ago about how the "thick blood" can cause vasoconstriction because it makes the brain think we are bleeding out, so it clamps down the blood vessels. Could be an explanation but I will keep looking for the article and post it for you. 

One of the possible underlying causes of POTS is thick blood or APS, I think it's called. Do you eat food higher in iron?

21 hours ago, WinterSown said:

Meat Muffins!  Meatloaf made in muffin pans ready to go into the freezer.  I will bag them after they freeze. We love these. Just use your favorite meatloaf recipe. Bake at 325F for about 35 minutes, I basted with a squirt of ketchup. 

Ground meat was on sale and I bought a three pound pack which usually makes 24 muffins. These are also excellent with ground turkey instead of beef. 
 

I know this sounds crazy, but I saw it on a cooking show. Ketchup on meatloaf and then put brown gravy over that and cook. I tried it and it was pretty good. Another good meal is making gyro meat and tziziki. I mix lamb and beef. 

On 1/23/2019 at 5:04 PM, WinterSown said:

I made a free-form Chicken Parm Tart. This was so much better than take-out and took only six or seven minutes of prep. I used a store pie crust. I tried to keep the filling a couple of inches from the edge. I topped the crust first with a couple of handfuls of shredded mozza, then topped that with some leftover chicken parm that I chopped up, added some more mozza and some parmesan, then a handful of halved cherry tomatoes that I squeezed the seeds and juice out of. The edge of the piecrust I wet with a little water and then folded it up to make the brim, crimping a bit as I folded it towards the center. Baked it at 375 for about 25 minutes until it looked brown and was bubbly. I am happy with this. It cut so nice too. I could do a thousand variations with this based on what-have-yous in the fridge. Leftovers get fancy when you put them in a crust; eh, some old home-ec story :-)

 

I could get on board with this. 

21 minutes ago, Derek1987 said:

Could the diltiazem possibly increase chances for fainting? When I drank a glass of wine at Olive garden, I blacked out right as I was finished eating. Another time I took a cayenne pepper pill and maybe an hour or so later I was in the ambulance. I didn't black out though. My body was trying to faint. Then I ate some peppers a couple months later and felt it coming on. Which I think these things dilate blood vessels. Correct me if I'm wrong.

Alcohol is a no no with POTS, at least that's what I've read. Does other food affect you? I know mast cell activation disorders can cause POTS and food factors in big time. 

In the past, my CBC's and CMP is always within normal ranges. It's why they doctors I see don't know what to think. 

14 minutes ago, Peter Charlton said:

I see my cardiologist next month, he is the only one who has shown interest in what beta blockers did to my nervous system. So I have already drafted the letter that I will just hand over for him to read, followed by a print out explaining the mechanism how beta blockers lower blood oxygen, and how low blood oxygen damages the Peripheral nervous system.

I think its easier for people to take in what is written down anyway, plus they can keep it to refer to again.

:-

" Soon as I went on beta blockers I described feeling like a "Drunk Zombie" and "Breathless" and as if my lungs didn't work properly. Re multiple genes that make me a slow metaboliser :- Nat 2 relates to not being able to clear beta blockers from my system and so I became overdosed and ended up semi-conscious after five weeks. Oxygen brought me around so the semi-conscious state was due to low blood oxygen.  Feeling like a drunk zombie must be due to low blood oxygen. What was happening to me when asleep whilst still on beta blockers?

Quite some time after coming off beta blockers, my blood oxygen was often measured at 85% for prolonged periods of the night, even when awake on the hospital monitor, so what was my blood oxygen when on beta blockers?

Effects of low blood oxygen?, Peripheral Neuropathy. Nerve damage.

Autonomic Neuropathy, many symptoms of this cleared up in April 2018, since then, my blood oxygen has never gone below 90% and I no longer have heart rate and blood pressure variability.  Still have some eating problems but these are much better as well though eating still makes me feel too exhausted to eat during the day.

Sensory Neuropathy seems to be getting worst, my skin feels numb, I keep feeling like I am being bitten, burning and tingling to mid thigh level now.

Motor Neuropathy seems to be getting worst, I drop things if I do not concentrate on holding them, my  walking is often unbalanced so people think I am drunk.

The brain fog, slightly drunk feeling has remained the same.

My deduction in lieu of nobody else bothering to deduct anything. :- I am sensitive to beta blockers and did not clear the days dosage before adding the next days. Beta blockers disrupted my Autonomic Nervous System resulting in low blood oxygen levels which have caused permanent damage to my nervous system which is heavily reliant on a good blood oxygen level".
 

 

Have you had MRI of your spine and brain? I have a very bad back, cervical fusion in 2012, C4-6, having c2-4 done in a couple weeks and L4-5 done last year. I know chiari malformation can cause POTS and a CSF leak can mimic it too, but when you say you drop things, I had that before I had the C4-6 fusion. I still have neuropathy in my lower legs from the L4-5 fusion, but the drop foot improved a lot. I still have bad areas of my back though. L2-4 are bad and T1-2 has some disk herniation. Something to think about. Funny thing is, I lost a lot of weight over a year and half, 170lbs. Went from 382 to 211-212. I am 6'5, but the toll the excess weight on my body is something I cannot escape. I don't know why I got POTS, all this started with GI problems late last may and POTS hit around christmas. The only thing I can think of is a poorly treated H Pylori infection when I initially had GI symptoms. 

1 hour ago, MeganMN said:

@JimL I cannot afford that but read that the chest straps might be more accurate for moving around and having super high rates.  Most of the watches are not as good for that and that is what I need.  We do not have  a Smart Phone either, so I am limited to what works with a tablet!

I can't afford that either. I'd like to have it. I just use an app on my phone to do pulse rate and I have a digital thermomerer and Omron BP device. It's old, but it works. My CPAP has cellular so I get data from that too. 

that is wild. Totally unexpected from a common sense POV. 

45 minutes seems like a long time to be up. I find that more the 30 minutes gets me in a place where I have to lie down. Even sitting for a long time will bring it on quicker. I had a therapist appointment yesterday and I was sitting for an hour and there in the car there and when I got up to leave, I was like, whoa. Dizzy, brain fog, unsteady. I take metoprolol for HBP, at night. That usually calms my heart down. The other thing is the unpredictability. I was having a good couple days before yesterday and then boom and my GI symptoms are going full blast too. 

I'd like to get an Apple watch. The new ones do EKG. 

4 hours ago, Pistol said:

Hi @gossamer4448 - hyper-POTS is diagnosed by symptoms and neurotransmitters ( resting and active, anything above 600 is considered abnormal ). The symptoms differ from other types of POTS due to the BP elevation, mostly diastolic hypertension ( the lower number is elevated as well as the upper number, i.e. 150/100 ). Typical symptoms are tachycardia, tremors, chest pain, cold hands and feet, brain fog and even confusion, cognitive issues, often headaches, in some cases fainting. A hyperadrenergic storm in my case presents with excitement and nervousness, shaking uncontrollably, blue lips, cold hands and feet, inability to find words or speak, extreme chest pain and hypertension. Often it ends in syncope or an autonomic seizure. Imagine if you are racing to get someone out of a burning building and your adrenaline is in overdrive. Then - when the fire is put out and all is over - you are sitting down and all that excess adrenaline is still in your system and you start shaking as if you are going into shock - that is what it is like. Fight-or-flight response - there just is no burning building, no cougar threatening you, no gun held to your head. Just a normal moment in every day life and this can happen. 

I've had some of that, but my bottom numbers don't elevate. Usually the systolic is 65-75. Top numbers are rarely above 130, usually 110-120 when I awake. I've had the cognitive issues and cold feet, I've had some shaking/tremors, but rarely. A lot of GI issues, bloating, gas, nausea, pain, headaches. I am going to try to setup an appointment with a neurologist I found on this website. He's local and has dealt with POTS, obviously. I hope I get in and not get dismissed as has been the case. 

That's great!

3 hours ago, Meemee said:

Hoping it wont get too hot where you are!

It always does. Once it gets much above 105, it sucks. The humidity is low, so 90-95 is ok here. Not like FL at all, easy to deal with, but at a certain point it doesn't matter anymore. I used to go hiking 4:30 in the morning during those 110+ days as it would be 93 and dark out. Once the sun comes up, it's torture. 

Never used to be cold before this. Maybe it's the weight loss too, but I laughed at the locals when they'd put a parka on when it was 32 out. I used to go outside in shorts at that temp. Now I feel cold. The heat hasn't hit yet, but I am not looking forward to possibly finding out I can't take that either, although I used to handle cold much better than heat. I've seen 123 here. 

Mine seems to be the opposite. It gets worse as the day goes on. 

What is ORS?

6 hours ago, Pistol said:

Throughout the years of dealing with POTS I have noticed that MOST cardiologists and EP's do not want to deal with POTS. They would have to re-think their whole way of approaching their field of expertise. Out of 5 cardiologists I only found one that was willing to acknowledge that I have POTS ( this was prior to diagnosis ) and he admitted that he did not know how to treat it. After diagnosis by a renowned autonomic specialist I had to find a local cardiologist as well and went back to him and he has been very willing to educate himself and work with my specialist. He actually sees other POTS patients now - I hope he will decide to specialize in that field. He is very good. He also told me that at most cardiology seminars the docs tune out and even leave the room when POTS is brought up - they do not want to touch it. That is why I believe the cardiologist you saw told you what HE believes is true - that there is no cure and you have to "just deal with it". That is untrue. There are many meds as well as other treatments that can help - but it is a long road to finetune the correct meds, since there is no one-fits-all treatment. It is frustrating for both physicians as well as patients and most docs will not touch us for that reason. So - keep looking. I was fortunate to have an extremely compassionate and good PCP who stood by me when the cardiologists sent me away. You just need ONE good one to make it through this ordeal - so keep looking!!!! 

I'll have to look through the resources of DI to see who's local. 

1 hour ago, MeganMN said:

I feel like most of us with this diagnosis spend a fair bit of time trying to find someone to listen and help us navigate the wide, unknown world of dysautonomia.  One of the ER doctors that I work with said to me, "Megan, it is so much easier to walk into the doctor and get a hernia repair, or a cast for a broken arm.  But what you have is different.  There is not road map.  There is no set course.  And that is much harder to deal with for both you and the doctor."  The Internal Medicine doctor that I am seeing is ordering all sorts of tests and it may all come back clear, with no reason or explanation for all of this, but it still makes me feel better to know that there is not something wring that can be FIXED.  In the end, I may still end up on meds to control the symptoms of a known diagnosis for an unknown reason, but it is still nice to rule things out that could explain what is going on.  The EP that I saw had no idea what to do with me.  He did not really even seem to want to try.  The Cardiologist was the same way, and they will not even see me now because they do not want to step on the EP's toes.  In order for me to get any decent Cardiology help I am going to have to go out of network to a completely different hospital system.  Or system is definitely broken.  We have become a system of throwing a band-aid at something and hoping it helps.  The weird, unexplained stuff is not something that most doctors wants to deal with.  Sorry you had that experience.  I know, for me, it is not as easy as just getting a different doctor or finding someone else, because I cannot afford it and my insurance only really covers in-network.  Hang in there, talk to us, and I have taken SOME comfort in knowing that although this feels like my life has totally spun out of control, I am not going to drop over dead from this, and I just have to try and be persistent in researching and trying to figure things out on my own and hope that along the way I can find doctors who want to help me.  

I can go out of network, but it will cost me 50%. When the EP called it like a migraine, I asked, what if I can't deal with working and he said, some people can't. He wasn't cold and impersonal, in fact he was almost hypno-suggestive, not really patronizing, by trying to be compassionate. I just get paranoid that there's something in my chart that says nut job and I'm getting passed around in the hope I give up. I know that sounds paranoid, but maybe it's just as simple as you all say. They know what they don't know and don't want to know. 

1 hour ago, bombsh3ll said:

Would it be possible to get a referral to one of the large specialist centres that deals with dysautonomia?

B x

I could go to Mayo, but after going there for a neuro ophthalmologist, I wasn't impressed. No root cause analysis for my diplopia. Never had eye problems in my life. She was like, you hve 4th cranial nerve palsy and probably have for awhile, but you've decompensated. That was it. Sends the report to my regular eye doctor who tells me I can get prism glasses. Like I said, other than age related far sightedness, I've had good eyesight. I am starting to wonder why I have doctors that don't seem to give a crap. I don't really have the means to go out of state and I don't have any sick time or vacation left and I work for the state. We acrue sick at half the rate of vacation. AZ is a cheap a$$ state to work for.