Sleep doctor or GP/Specialist doctor for these issues?

[pianoman37]

I have SO much going on and need some advice. 37 year old healthy and fairly fit, muscular male. 5'8 and 150 pounds. I've been "tired" for a lot of my life and couldn't focus that well. School was a big struggle and so is driving to this day. Not mentally alert enough. March 2018 sleep study showed 4.7 AHI with 18 RDI. Ridiculous amounts of RERAs listed. One in-lab study chart says 166 arousals+awakenings in 2.75 hours. 50 breathing events noted. No drops in oxygen levels below the low 90's, however. That sleep doc didn't recognize/treat Upper Airway Resistance Syndrome, so I got pushed by the wayside and denied a CPAP. July 2018 my ENT doc did turbinate reduction and deviated septum surgery. I have breathed better since in regards to inhaling and exhaling, but sleep was still the same. Did a home sleep study a few months after surgery and got a 5.2 AHI over 6 hours of sleep. ENT doc wrote me a prescription to get a CPAP simply because she was floored that the sleep doc wouldn't give me one. It hasn't been titrated, particularly for the Respiratory Effort Related Arousals (RERAs). I used the APAP mode set to 7 starting pressure and 12 max to gauge my general obstructions. It never went above 9cm max to clear obstructions and usually hovered in the upper 7's to 8's on average. Brought the AHI down to 0.5 and even 0.0 at one point for an entire night, but still felt awful for months.

3 months ago I went to the ER after I was getting ready for bed one night and felt a cold feeling in my chest. My heart started racing, blood pressure went up pretty high (170/100), I felt faint-like, my whole body was trembling, etc. I never had that happen before. All told, I ended up going to the ER 3 times during various isolated incidents. Other times I had symptoms and stayed at home until I shook myself to pieces and it went away. Had all kinds of EKG's at the hospital, endless blood work for everything, had an MRI of the abdomen, a contrast CT scan of the abdomen, etc. They even checked for blood clots, heart attack, etc. Nothing. So they had no reason why my blood pressure or heart rate was suddenly up. GP doctor did all kinds of blood work a few months ago over several visits. Even blood work for adrenal tumors and such. My MRI and CT scan showed every organ as normal. I went to a Cardiologist and while my blood pressure was high sitting there, he had no idea why. I came back the next day and did a full Stress Echocardiogram, they looked at my heart beating in real-time via ultrasound and were able to see blood flow rates and everything digitally. They gave me an event monitor to press to my chest during these "attacks" and while I used it, they never noted anything out of the ordinary when I sent the results in.

Yet to this day I'm getting palpitations and my blood pressure monitor shows an alert for heart race bouncing up and down quite rapidly. Previous GP doctor tried to blame it all on anxiety and wanted me to keep taking Metoprolol to get rid of the symptoms, but not figure out why I have them. I've found another local GP doctor that I have a telemedicine visit with in the morning until I can get into the office when they accept more patients. They have a critical care provider that they may refer me to in the meantime.

I have an in-person visit with a very well-known sleep doctor/ENT doctor at a local hospital campus on 4/15. It is a whole team of people that deals with sleep disorders and ENT issues combined. He wants me to bring my CPAP, the sleep studies, etc. They're doing one day a week in-person appointments due to all of the Coronavirus stuff.

For the past 1.5 weeks, I've gotten to the point of being dizzy all day long from the time that I get up until the time that I go to bed. Chest pains, weird "cold" and tingling feelings in both legs (but more so the right than the left) are an everyday thing for me now as of the past 3-4 days. Even sexual activity makes me feel like I'm about to faint (I suspect due to the temporary reallocation of blood flow). This may be Postural Orthostatic Tachycardia Syndrome, which I've never had any issue with. My pulse does go much faster as soon as I stand up every morning. It is slow when I'm lying down. My blood pressure goes up and down all day. Could be in the 140's over 90's to 100 and then go back down to normal just a minute or two later.

I've had Gastritis for 3 months and I'm under the care of a GI doc for that. I may not be absorbing some vitamins because I'm on Nexium 40mg twice a day (for about 2 months now) to keep acid low. I'm taking a Stress B-Complex, 250mg Magnesium, Calcium, Vitamin C, Vitamin D3 and a multivitamin at intermittent levels and just started doing that 2-3 weeks ago after taking the meds for 1.5 months. I've read that they can cause low vitamin levels. I take the multivitamin daily. I try to stagger the others so that I don't take them all at once or too often. My GI doctor recently requested blood work, but nothing came back wrong other than high cholesterol. That's because I haven't been exercising much due to how poorly I feel. I'm trying to average at least 20-30 minutes a day on a recumbent bike and also eating more stuff like Avocados, broccoli, etc., trying to get my cholesterol down to a reasonable level. But with the rapid heartbeat and the odd dizzy-like feeling I get on a daily basis, it also makes working difficult.

Anyone had any first-hand experiences with sleep apnea or UARS causing this? My understanding is that the autonomic nervous system and sympathetic nervous system can be malfunctioning and cause all sorts of weird stuff. Can a GP doctor do anything or give me any meds to help regulate the POTS or dizziness?

I recently came across a medical term - Cyanosis - that describes some of the stuff I used to see. For instance, my fingernails would get a light bueish/purplish under them sometimes when I was cold or nervous. Also, all over my body if I get cold I start getting this light reddish/blueish look on my skin. Not as dramatic as the pure purple-like color that the people in photos of Cyanosis seem to get, but my fingernails and toenails do get a decent shade of blueish/purplish certain times. Should I be concerned?

[Julie]

YES - it means you're very low on 02 - stop exercising for now, at least til you see the sleep doc.

PS - UARS can be treated with cpap... depends - so ask the doc when you see them.

PPS - multivits are a waste of money (huge research done couple of yrs ago), learn how to eat properly instead.

[pianoman37]

YES - it means you're very low on 02 - stop exercising for now, at least til you see the sleep doc.

PS - UARS can be treated with cpap... depends - so ask the doc when you see them.

PPS - multivits are a waste of money (huge research done couple of yrs ago), learn how to eat properly instead.

Well, I was doing the cardio because I've read where 20+ minutes of exercise a day is actually good to help out with POTS symptoms due to the blood not pooling in the legs as much. Are you referring to the tingling in the legs being the result of low O2 or the blueish/purplish color that I sometimes get under my nails when I'm cold or nervous? The rest of the time the nail beds are pink. My toenails tend to turn that color more than my hands, but I've had cold feet for most of my life, so it is kind of expected with them.

With Gastritis (swollen stomach lining), I can't properly absorb as many vitamins as normal, so it is generally advised when taking a Proton Pump Inhibitor (med that keeps acid low in the stomach) to take supplements because it can cause you to be low on various vitamins. I'm eating some fairly healthy foods in addition to the supplements, as well.

[Julie]

Cyanosis is the bluish tinge that signals low oxygen.... I don't know about your legs though. And 20 mins exercise daily may be fine for all kinds of people but in your case I personally (after working in teaching hospitals all my life) would wait til I saw a doctor before continuing. I have gastritis - scoped and all, and I take half a TUMS before bed and... no trouble. I don't know about POTS but would be careful diagnosing myself via Googoo in the circumstances.

PS has it occurred to you that you might get cold/nervous as a result of low 02 and/or some cardiac condition?

Of course you could also look up Raynaud's and see if anything fits... I hope you find it's all a circulation problem.

[colomom]

My 2 cents as far as sleep apnea is to keep at the CPAP maybe download OSCAR and post a chart or two, those who are more knowledgeable than I may be able to help you get your therapy better dialed in.

My son has OSA, POTS, and hEDS, your suspicion of POTS perhaps is something I can help you with. If you haven't done so already I suggest you try an orthostatic vitals test, which you can do at home.
1. Lie down for 5-10 minutes, then have an assistant take your resting heart rate and blood pressure
2. Sit up for 2 minutes with feet on the ground and again record heart rate and blood pressure
3. Stand for 5 minutes, have your assistant take your BP and heart rate at 1, 3, and 5 minutes.
During the test be sure to note any symptoms you are feeling.
With POTS you would see a sustained increase in heart rate of at least 30 BPM in adults (40 in teens) upon standing.
With your suspicion of POTS I encourage you to keep up your exercise routine, a recumbent bike is a great choice when you have orthostatic intolerance.
Drink tons of water, and maybe try compression socks or tights. Normally salt loading is recommended, but with your high BP readings you may want to hold off on the salt for now.
As far as what type of doc you should see I recommend you go to the Dysautonomia International website; click on patients, get connected, find a support group, and register for a group in your state and ask for doctor recommendations there.
Sleep disorders are common in patients with POTS. Raynauld's which Julie suggested can also be seen along side POTS (with Raynaulds your hands and feet don't get enough blood flow in cold temperatures which can cause discoloration).

Your description sounds like it could possibly be dysautonomia, but I wouldn't settle on that without seeing a knowledgeable doc who takes the time to rule out all other possibilities. Hope you are able to find the right docs and figure out the root cause of your problems!

[jkirchgessner07]

Found this forum and have similar issues to the original poster (dizziness, difficulty swallowing, cpap not working, etc). Have you received a diagnosis or found out what has been causing your issues?

To the note about throat tightness
, I get that too. However, I’ve ruled that down to bruxism (teeth clenching). Clenching while asleep causes tightness and muscle fatigue in that exact spot you mentioned. I got a special night guard and the tightness stopped in that area almost completely. However, the mouth guard did distribute it to my actual jaw, so I now get occasional tightness there.

[chunkyfrog]

TWO YEAR OLD ZOMBIE THREAD
Original poster long gone.
Do not expect anything.
My advice: go to the ER.
Otherwise your imcompetent docs will keep ignoring your issue.