POTS Diagnosis, etc.

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skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 9/10/2009 1:30 PM (GMT -7)   
I learned of a condition called POTS through a very helpful reply from another CP'er on here and checked out the symptoms, etc. I went to my previous visit to my new Neuro armed w/a printout from the POTS page and asked him if he thought this is what I could have that is wrong w/me. He said that I didn't have POTS the last time I saw him but I pressed the issue w/me passing out when standing up, etc. and he said he was going to do a tilt-test on me (monitor my blood pressure while tilting me upright from a horizontal position) and see what the numbers come out like.

On a side note: he gave me samples of Cymbalta which he said may be able to help w/my chronic back pain. We are going to wait three weeks before doing the tilt-test in order to let the Cymbalta do it's thing and see if it makes much of a difference...


Skrape
Pain:
Oxycontin - 40mg x 8 hours
Vicodin - 5/500mg x 1/2 every 6 hours (as needed)

Sleep:
Amitriptyline (Elavil) - 25mg x 1 to 2 at bedtime
Zolpidem Tartrate (Ambien) - 10mg x 1 at bedtime

Heart/Cholesterol:
Atenolol - 50mg x 1 a day (lunchtime)
Crestor - 10mg x 1 a day (lunchtime)
Niaspan - 500mg x 1 before bedtime (w/a low-fat snack, one hour after an aspirin)
Trilipix DR - 135mg x 1 a day (lunchtime)

Other:
Amitiza - 8mcg x 2 a day (when needed; not often)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14417
   Posted 9/10/2009 5:15 PM (GMT -7)   
I think I saw that test on House several months ago.

Joy

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 9/11/2009 5:25 PM (GMT -7)   
Skrape,

Hey... I've been off the board for the last few weeks with just "life" stuff. I got on here today and saw your post.... How have you been feeling lately? The last time I was on the boards, I think you were dealing with side effects from Fentanyl... looking over your meds list, it looks like you are off of that now... Hope you are feeling better.

You know, the reality is that the majority of doctors/medical people don't know much about dysautonomia (which POTS falls under) and POTS. When I tell a new doctor or the ER about what I have, I have to even tell them what POTS stands for (postural orthostatic tachycardia syndrome). Nowadays, I just say "I have a heart condition" most of the time. Too hard the other way! I'm glad you are pushing on with your doctor and insisting on testing and such. The thing is, though, IF you passl the tilt table test, you can still have POTS. It wasn't until my second TT test that I "failed" it and was actually diagnosed. There are other ways to diagnose it, too (TT being the best, but there are other ways). One of which that would give a good indication of POTS is wearing a Holter monitor. Have you done that before? Let's see...there was years ago - trying to remember...I "think" it was just like the EKG sticky pads that I stuck on that is connected to a small machine that I kept in my pocket. It monitored my heart rate for about 24 hours. I think I also kept a small journal of "what" I was doing throughout the day so they could compare my heart rate and journal. Basically, it showed that I was in "marathon-mode" all day but my heart rate would go sky high with any activity - like climbing stairs, taking a shower, or even something as basic as standing up.

Back to the TT test - some people actually pass out. By blood pressure plummeted and I was dizzy and VERY nauseated but didn't pass out. You might, given some of the things I remember about your symptoms.

Anyway, I'd really encourage you to learn as much as you can about dysautonomia and POTS. Dr. Grubb is a leading doctor on the condition. Many of the articles on the web he has written. I hope to go have a consult w/ him one day; I just haven't been stable enough to travel. There's also a doctor (cardiologist) at Stanford that I saw; she sees many patients w/ POTS. She's great. What part of the country do you live in?

If you have any specific questions, feel free to ask. I hope the tilt table gives you some type of answers....
Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); MSIR (15mg/6x day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation

Post Edited (Momto6boys) : 9/11/2009 6:28:34 PM (GMT-6)


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 9/12/2009 3:23 PM (GMT -7)   
Momto6boys

Noticing on the bottom of your post that you list you have "Central Sleep Apnea" do you mind me asking what kind of treatment are you using for it? CPAP, BiPAP, or an ASV machine? Just curious, as I also have Comples Sleep Apnea with mostly Centrals and I use the VPAP Adapt SV with 3 liters per minute supplemental oxygen and the new Fit Life full face mask! There are so many things that can cause Central Apneas, heart and neurological problems and upper spinal cord injuries, and of course, the pain meds themselves can cause Central Apneas. Anyway I noticed you had that listed and I just thought I would ask!

I wish you well!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 9/12/2009 7:20 PM (GMT -7)   
Hi White Beard!

It's funny that you ask that because I'm actually going to yet another sleep study tomorrow night. The first sleep study I had was in Colorado and I was dx w/ central sleep apnea. At the time, they thought it was a combo of things - from my heart condition, to the autonomic nervous system stuff I have PLUS the high narcotics I'm on. Then, I started having some other lung stuff. I kept getting pneumonia, even ending up in the ICU w/ it and so forth. So...all of that got in the way of the sleep apnea being correctly treated w/ CPAP or VPAP, etc. I ended up w/ an oxygen concentrator w/ just regular O2 3 liters around the clock.

I just had my first sleep study here in CA two weeks ago. It now shows that I have MSA - mixed sleep apnea. I didn't sleep well that night because of my pain levels and, I think, anxiety. It was so frustrating. I took 10mg of Ambien - which, a long time ago, would knock me out and I wouldn't remember the night. Nope, nothing. I took as much as my pain meds would allow; nope, my pain was way high. So, they tracked as much as they could. I'm going back tomorrow night to figure out "what" machine I'll be on. Do you think w/ the MSA I'll get a VPAP? I need the nose/mouth mask because I'm a mouth breather... just having the nose one makes me feel like I'm holding my breath under water... is that what you have...? Or is the "full face mask" something else?

I'm so ready to get this sleep apnea under control. I think we talked before about our sleep positions; I have to sleep with five stacked pillows (semi-upright) to feel like I will have enough air at night - NOT a good feeling. In addition, all of the sleep studies have said that I have a near absence of Stage 3 and 4 sleep; NO REM at all. I honestly don't think I've had a "deep" sleep in years. Finally, I've been unable to get any weight off - and my docs think that maybe getting my sleep apnea treated will help.

I'm glad you asked! Let me know if you have any thoughts about what I posted.
Take good care! --Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation

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