June 7, 2013 at 10:19 am #457
Well I finally got the results from my autonomic testing. Unfortunately, the testing was done the day before my period, which is my highest functioning day ever. I felt so amazing the day of the testing that I did not think they would find anything wrong with me.
1. Positive tilt table test for Vasovagal syncope, mixed response.
2. No evidence of POTS.
3. Normal Beta adrenergic hypersensitivity test.
4. Positive for increased intrinsic heart rate.
5. Normal alpha sensitivity test.
6. Normal Alpha activity test.
7. Catecholamine level determinations are pending.
I do have pots. I showed him a video of me wearing a heartrate monitor demonstrating POTS. Right after he watched it he said he did not have proof LOL. At first I was really upset about all the things that I did not get diagnosed with that I know I have.
However, now I am seeing it in a different light. I am so happy to finally have a diagnosis of vasovagal syncope as well as increased intrinsic heart rate. He thinks the cause of the VVS might be vascular, as my heartrates and blood pressure remained constant until I fainted. In addition, I have a protruding disc at T5 – T6, which is indenting the spinal cord. I insisted on an MRI of my entire spine, as I had pain in the thoracic area.
I am being sent to a neurosurgeon for an opinion and I am also being sent to a cardiac rehabilitation program. This is exciting for me because I have gone 20 years without being taken seriously. Now I have 2 more diagnoses under my belt, and next year when I go back again for more testing to the autonomic lab, I suspect I will test positive for even more things.
Hang in there Those of you that are still waiting to get diagnosed. What set all of this in motion was a 24 hour blood pressure monitor, which showed the cardiologist evidence of pots in the middle of the night when I got up to go the washroom and also pots first thing in the morning. She then believe me, and sent me for autonomic testing.June 7, 2013 at 10:47 am #3720
hi please help me. i was told in 1994 i had pots but no treatment was available. yesterday my neurologist called and said the tilt table was negative, i asked why in the 90’s it was positive but now is negative, and when i wear a heart monitor my heart rate goes over 200 just going up steps. she said she did a tilt table for nerve response not a cardiac tilt table with an iv etc. has anyone ever heard of 2 different tilt tables??June 7, 2013 at 10:56 am #3721
Never heard of two different tilts. However, if your neurologist did the testing, it makes sense that it is for nerves. The doctor that did mine was an electrophysiologist which is a cardiologist that specializes in dysautonomia. I think you should get a referral to see an electro physiologist.
The title on my reports is cardiac investigations. And the things I listed above in my postings are the seven things I was tested for Regarding dysautonomia.June 7, 2013 at 12:20 pm #3722
did you have an iv? i’m going to the cleveland clinic. on the dinet.org website dr david martin is recommended @ the clinic. anyone with any ideas? i’m just really upset 90% of what is on this site is me. i also have an appointment with a genetics for hypermoblelity eds.June 7, 2013 at 3:41 pm #3723
Yes, I had an IV. Once you are diagnosed with EDS, you will be taken more seriously. The electrophysiologist seemed to be aware of complications for people with EDS. That is how he knew the cause of my Vasovagal syncope could be vascular. Try not to be upset. Put a positive spin on it. you are figuring out what is wrong with you. That’s is good news!June 8, 2013 at 8:48 am #3724
thank you for the reply, i had a really bad night with pain, i just want to cry. might start and never stop. i’ve been going though this my whole life but got really bad 22 yrs ago. are you hypermobile? i’ve always been able to do crazy things with my body like walking on the sides of my feet (on the sides of my ankles) no pain with that. in the beighton scale i would say i’m a 5 b/c i can’t tell if my knees or elbows bend back. also i am 53 with bad arthritis so i’m not as flexible as i once was. i just had partial rotator cuff surgery b/c i’ve dislocated my shoulder so many times i had to fix it. i can turn over in bed and my shoulder almost touches my neck but goes right back were it’s suppose to be. does that sound like hyper eds? thanksJune 8, 2013 at 3:08 pm #3726
I have classical EDS, not hypermobile. I do have hypermobility in my digits elbows and knees. I can do some pretty weird things with my toes. But it sounds like you are much more hypermobile. I also have severe arthritis in my spine. Make sure your geneticist will diagnose based on presentation. I actually do not have the genes involved, but based on physical examination, I was diagnosed by the geneticist with classical EDS. There are genes involved that they are unaware of, so geneticists can diagnose on presentation alone.June 11, 2013 at 11:15 am #3752
hi! can you have dysautonomia without pots? when i had my tilt table the girl doing the test said it took longer b/c my blood pressure was all over the place? i wasn’t moving or had moved in 10-15 minutes. twice during medical procedures my blood pressure went dangerously low. turning over in bed my heart rate on a heart monitor can go to over 180 and going up steps i can go over 214. my average heart rate is 95 bpm, i have been going into a-fib, have had supraventricular tychacardia forever. any thoughts? not pots? thanks for helpingJune 11, 2013 at 4:31 pm #3758
I was diagnosed with ‘Features of POTS’ not particularly confirmed with the tilt table test (as I think the dizziness I had during that, was leaning more towards a vestibular cause), so not typical POTS, just features of POTS. I had purple leg (with searing pain), tachycardia, dynamic blood pressure, arrhythmias, waking with sweats, inability to stand for long, so all the typical symptoms.
I had more general dysautonomia showing up when climbing the stairs and, in retrospect, having subsequently found out I have cranio-cervical instability, I personally think it was the head movement causing it.
However, first thing on a morning I definately had the medical criteria for blatant POTS, getting out of bed could shoot my pulse up by as much as 55 beats per minute but as the day progressed my POTS would calm down, yet I still suffered from the symptoms of Dysautonomia. One thing that was common was, when I had the symptoms of dysautonomia (chest tightness, chest pains, arrhythmias, sweating, light headedness), I noticed my Diastolic blood pressure (the lower of the 2 readings) was always 90 or above.
Now, many years on, I rarely have the signature symptom of POTS (an increase of >30 heart beats per minute when standing) but I still have some form of Dysautonomia. I would say that what I have is more like Neurally Mediated Hypertension (the longer I stand up, the higher my blood pressure gets), so this is how my body deals with it now.
I think it has many ‘flavours’, Dysautonomia, it’s basically anything that interrupts, or interferes with the Autonomic Nervous System. Whether it’s classed as POTS or not, it’s still something that’s happening to me, that shouldn’t be.
(UK)June 12, 2013 at 7:08 am #3764
thank you for posting. i learn so much for you guys that have posted on my questions. i think about giving up but then someone answer’s my question and i want to fight again. all of my kids (i have 4) have signs of dysautonomia. my left leg has had a blood clot, varicose veins, purple straits and now when i do to much can swell to twice the size of the other leg. both swell left leg is just worse. Barbara what are you doing to get better? mine has been with me my whole life, just seems to be getting worse not better.August 7, 2013 at 2:35 am #40582dizzy2driveParticipant
I’m no Dr., but I’m becoming educated on POTs and dysautonomia. I did have a positive TTT, my heart rate increased dramatically, but on that day my blood pressure didn’t drop significantly. I told the Dr that I happened to be having a “good” day that day and I’m sure on a different day he would see BP drop. Plus I had a different U of M Dr. Clearly track how my BP drops upon standing on another day (not to mention I take my own BP and see that it’s dangerously low most of the time. We all know we have good days and bad, with a variety of different symptoms on different days. It only makes sense with the dysfunction of our vital organs that you could get different TTT results on different days.
Next week a Dr wants to conduct a TTT on me while on all my drugs: beta blocker, florinef and Savella.
Anyone know why he wants to test me while on my drugs? I hope he’s not going to try to get a negative and tell me I don’t have POTs, because I know that’s not true.August 22, 2013 at 12:14 am #4165Lab-Scientist-LadyParticipant
When are y’all good days? I can’t figure out my pattern. I know if I don’t get a good night sleep, which is hard to do, my symptoms are worst. Sometimes I salt load to feel better. Sometimes that does not work. I think the salt only helps with my orthostatic intolerance. Sometimes caffeine works and sometimes it makes things worst! Can’t win.
ShondaOctober 29, 2013 at 8:04 pm #4555StayingstrongParticipant
I am new to group and was diagnosed Chiari 1 in 2006, cci 2008(eds classical in 2008) but my spouse “poo poo”ed on the eds and cci diagnosis. Have had the dizzy, chronic pain, fatigue , etc. seen all the PCP, cardio. ent, Neuro, Neurosurgeon, etc Have not worked since 2008 due to my symptoms. Just found Mayo clinic and had to force my cardio to refer me to them for the autonomic testing. My previous doctors all awful. never would refer me when I asked for a Vit D test, they said NO. and now this cardio said NO. I had to threaten to call the medical board! Anyway, saw the Neuro, he did the ttt, only had me upright for 10 min , it did not trigger my symptoms. but did trigger erratic bp. He diagnosed me with Orthostatic intolerance. I also, have mine trigged when I go up my 16 stairs of my house, it will ususally trigger my heartbeat to 180 . I told the Neuro at Mayo this. He started me on 2l water day, salt 6g day, elevate head of bed, compress stocking, exercise daily, it is helping some, I can feel the difference. I have gotten my Vit D up from 11 to 30 now. Now the doctor wants to do a CATECHOLAMINE BLOOD DRAW TEST. What is the point of this? is it costly? It says will take an hour and a half. drawing blood at 30 min and then after 10 min of standing?October 29, 2013 at 9:50 pm #4556
thank you for posting. i learn so much for you guys that have posted on my questions. i think about giving up but then someone answer’s my question and i want to fight again. all of my kids (i have 4) have signs of dysautonomia. my left leg has had a blood clot, varicose veins, purple straits and now when i do to much can swell to twice the size of the other leg. both swell left leg is just worse. Barbara what are you doing to get better? mine has been with me my whole life, just seems to be getting worse not better.
Sorry, just found this post unanswered! I have found a couple of posts where I address some of your problems:
Here’s my way of dealing with leg pains:
The severe excrutiating pain I used to get when my leg went purple, was very difficult to deal with. The only solution was to sit down and if that didn’t work, to lay down and if that didn’t work, to CRY!! The solpadeine helped take the edge off but that’s all. I did find that if I had a daily bacon sandwich, it wasn’t as bad, maybe the salt from the bacon expanded my blood volume (made it less thick and claggy), or maybe it was the growth hormone that it’s pumped with, who knows!
I also have to watch the position of my legs, as raising them to the height of my bottom causes cramp, so I even have to sleep with them at least 6” lower than the level of my bottom.
If I’m sitting still for any length of time, I have to wiggle or judder my legs to keep the pain away, I get a sort of warning feeling, an ‘aura’ if you like, that the pain’s going to start if I don’t improve my leg circulation by juddering my leg. I used to use a massage mat, that covered a full recliner chair from top to bottom and if I sat on that and switched on the lower half, that helped alleviate this warning feeling and therefore avert the full pain attack.
I have my lower legs massaged twice a week and this helps a lot too. I think it get’s rid of the lactic-acid build-up (I could probably do with having this done every day!)
Coldness, worsens the pain, so I wear support hose, legwarmers, long trousers (all year round!) and always shoes or slippers (never bear-footed, especially on a cold floor, that’s asking for trouble!)
The 24/7 support hose helps lessen odema and helps circulation too.
Hope some of this helps.
Another post I came across which talks about other pains and some solutions was:
(UK)October 29, 2013 at 10:04 pm #4557
I am new to group and was diagnosed Chiari 1 in 2006, cci 2008(eds classical in 2008) but my spouse “poo poo”ed on the eds and cci diagnosis. Have had the dizzy, chronic pain, fatigue , etc. seen all the PCP, cardio. ent, Neuro, Neurosurgeon, etc Have not worked since 2008 due to my symptoms. Just found Mayo clinic and had to force my cardio to refer me to them for the autonomic testing. My previous doctors all awful. never would refer me when I asked for a Vit D test, they said NO. and now this cardio said NO. I had to threaten to call the medical board! Anyway, saw the Neuro, he did the ttt, only had me upright for 10 min , it did not trigger my symptoms. but did trigger erratic bp. He diagnosed me with Orthostatic intolerance. I also, have mine trigged when I go up my 16 stairs of my house, it will ususally trigger my heartbeat to 180 . I told the Neuro at Mayo this. He started me on 2l water day, salt 6g day, elevate head of bed, compress stocking, exercise daily, it is helping some, I can feel the difference. I have gotten my Vit D up from 11 to 30 now. Now the doctor wants to do a CATECHOLAMINE BLOOD DRAW TEST. What is the point of this? is it costly? It says will take an hour and a half. drawing blood at 30 min and then after 10 min of standing?
Oh, so many of us understand the bad-doctor experience! It doesn’t help with your spouse being unsupportive either. If he understands the Chiari 1 thing, where your hind-brain is escaping down your spine, ask him to imagine what happens when that rogue piece of hind-brain is getting battered by the back edge of your ‘skull hole’ (foramen magnum), every time your head shifts – it’s not going to help it any, is it ?!
I had my catecholamines taken during my tilt-table test. I’m not too sure (Dr Diana’s probably the best one to answer this) but, from memory, it’s to check how your Adrenaline, Noradrenaline and Dopamine react when you stand up. For most of us with ‘regulatory’ problems the Noradrenaline goes up too high. I’d say, it’s probably a good measure of part of the problem. What treatment do they intend to give you, as a result of this test ?
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