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My Rheumatologist refused to give me Diamox because he said it’s a blood vessel thing which is a heart thing and I would have to get POTS confirmed first. So how do I get POTS confirmed if my halter monitor results are coming back ‘normal’ when they are NOT normal? I am 100% sure I have POTS – and I am SO frustrated. I meet all the criterion for POTS.
The Internist told me the halter monitor results came back normal. I said, “Are you kidding me? She showed me an irregular heart beat on the screen as soon as I was hooked up!” The doctor explained to me that if the arrhythmia is not constant, it is not considered an arrhythmia. What the #$%^ is that? So, if the arrhythmia stops whenever I sit down it doesn’t count??? The internist didn’t even take my BP or HR laying down and standing. This would have been the biggest clue!
Like I have all of this energy to waste on this! It’s a vicious cycle of not getting anywhere with the doctors, which is causing me stress, which is exacerbating all of my symptoms, causing me not to function, not able to get help – vicious cycle.
I had a lot of irregular heart beats and I know the POTS was bad when I had the halter monitor, so how are the results coming back as ‘normal’? What is their definition of ‘normal’? If this is how they are interpretting results, a lot of people will go undiagnosed.
Any thoughts? I am SO stressed and SO frustrated. It’s taken me 20 years to figure out that I have EDS & POTS, and Dr. Diana has figured out the cause of POTS in EDS – the last and most important piece of the puzzle. So, I finally know what’s wrong with me and I can’t get the help that I need! I am sorry, but the medical system does not work as it is. There needs to be changes.
Any thoughts? Any ideas on how to get POTS testing? Oh, and my heart ultra sound came back ‘normal’. Three valves have insignificant stenosis and regurgitation. Well, what is their definition of ‘insignificant’? The cardiologist told me everything was ‘normal’, but the woman doing the ultra sound kept pointing to things on the screen and saying, well what about that, and what about that, etc. etc. and the doctor said it was all fine. Makes you wonder.
Hi, I’ve had some similar experiences.
My echo said that I was nearly dead and several doctors told me not to be scared when they implant a pacemaker. Many heart problems.
My thoracic MRI, where I was so terrified that I’m lucky that my heart didn’t burst – brought my EF up and the echo was now ‘old news’.
My holter monitor showed, arrythmia, brachycardia, and tachycardia which they didn’t seem concerned about. I was thinking that they don’t realize that a few steps to the bathroom can send my heart into a frenzy. Maybe they thought I was exercising to create the tachycardia. I just dropped the subject. I don’t have the energy to advocate for myself with someone who is ‘blind’.
I was told that the echo didn’t take into account my chest deformity due to the EDS. That’s why the results varied. I was also told that my heart is now stable.
My genetic doctor said that it was fine if my heart was stable but I have cardiomyopathy as well as other heart problems. He said that I should know why my heart is damaged, what the cause is, or something-or-other about my heart is not a non-issue. He felt my heart was, indeed, an issue.
Who am I gonna tell this to????
According to me, I have dysautonomia. I am not 100% positive of POTS because I am not positive of the consistency of my heart rate. Yes, it goes up 30bpm when I stand BUT I’m not positive that it does exactly this every single time. It goes crazy for no reason. I feel wave of cold over me and it drops significantly. I can sit still and it changes up on me. My body doesn’t seem stable enough to me for me to be sure of POTS. I burn. I sweat. I freeze. ALL RANDOMLY AND WITHOUT ANY PROVOCATION WHATSOEVER. Vomit. Nausea. Diarrhea. My body is just haywire! It’s all over the place. Now, let me try telling a doctor that I have dysautonomia. Yeah, right.
I do want to say this: Blair Grubb and his PA, Beverly Karabin are familiar with dysautonomia. They are out of Toledo, OH. I haven’t been as of yet but I’m sure it would be worth it.
I think he might be POTS expert also. I’m sure that going to him would be better than spending years ‘chasing your tail’ and being abused by multiple doctors. RIP THE BAND-AID OFF! LOL! We can get it right the first time, God willing. I think it would be a lot better for our health and quality of life.
Here’s a thought: what if the echo and thoracic MRI results were so diff because my heart and my body are insanely out of sync?! Hmmm! Hmmm! The variance is off the charts, really. I’ll bet if I had an echo every day, it would be quite diff – or maybe once per week. My days seem to go in ‘clusters’ ie: headache for 5 days, pants crapping for 4 days, can’t stay awake past 7pm for a handful of days, too exhausted to barely move for 3 days, blah blah, yadda yadda – just the tip of the iceberg. Might get a few relatively consistent days of a certain suffering, who knows? Then the next ‘wave’ comes in stronger and shifts focus onto it. Lucky me, huh?
Sorry for what you’re going through. I’d say an expert who would actually help would be the best course of action.
Hi. Thanks for responding and thanks for all of your input. Wow, sounds like your body is really out of wack. I actually figured out the POTS first. One day I was SOB (short of breath) just from standing up and walking to the kitchen. So, I took my pulse and realized I was going from 60 to about 120 or greater every time I stood up. My ND (naturopathic doctor) confirmed that I have POTS by taking my pulse and blood pressure supine and standing, but I have not had a confirmed diagnosis with testing, etc.
It was the POTS research that led me to EDS, and that’s how I figured out I have EDS. At least I have EDS confirmed.
I went to emergency once because one side of my body was FREEZING cold and the other BURNING hot. My heart was pounding so hard in the burning hot side. I went to emerg. b/c I have never had my heart pound so hard on just one side of my body; usually it’s both. My veins were popping and I felt so ill every time I layed down. Anyway, the ambulance attendants hooked me up and said I had a bradycardia laying down, my HR went up to 75 just from sitting up and then over a hundred immediately on standing. Hello? Does this not indicate POTS or at least indicate that it should be looked into? They made me sit right away; I’m sure it would have went higher. And the Internist I saw about the Halter Monitor is the doctor from the hospital I was sent to! So is there no communication? Did she not read the ambulance report? She did nothing further, as the Halter Monitor came back normal.
You should just gather ALL of those records and take them somewhere else. Many ER doctors are salaried with their local hospital for a reason (IMO), they aren’t suited for successful private practice.
I’ve had upper hot and lower cold. Veins bulging above waist and retracted on lower freezing half. Insane, right!
I’ve never had either side being diff like that.
I wouldn’t dare go to the local ER where I’m at now as I truly believe they could be negligent or incompetent enough to cause serious harm to me. I have, however, gone to bed at night wondering whether or not I would wake in the morning. Sorta like the couple of times, long ago, when I drove tired at night from a trip and thought that I’d rather wreck and have the police present versus pulling over to sleep and risk being raped and mugged. Yes, I know it’s wrong to ‘drive tired’ but I was very young. Risking death in my sleep seems to me to be the lesser of the two evils – as bad as that sounds.
Now, everyday is sorta like those couple of extreme times of driving tired and that one exhausted time in High School when I almost fell right off my chair due to inability to remain upright due to profound exhaustion. So weird, huh.
There’s not much use looking for medical help if I’m not going to receive any. I can feel good about my physical therapy (since exercise is good for nearly every ailment). My PT has helped me out with frozen shoulder and has given me basic info that I’ll remember just cuz she said it during such a critical time. She says, “We were designed to move” and need to make sure our bodies move, at least a little, to prevent further injury – such as frozen shoulder, etc. At least that is something that I can feel proactive about. Once per week for 30 min. Even if I’m not furthering my abilities, I should be maintaining – which my genetic doctor said is the goal – slow the degenerative process of EDS.
I try to make any positive medical provisions that I possibly can. I’m just so limited.
Anyway, if you gathered your records and took them to a specialist, I’ll bet you’d get a heck of a lot of answers.
We had multiple failed attempts to “catch” my son’s high heart rate at the doctor’s office because he can be delayed depending on: hydration/dehydration, time of day, etc. I was so fed up not being able to PROVE my son’s inattentive ADHD symptoms were from POTS, I gave him a poor man’s tilt table and he spontaneously VOMITED. I freaked and took him AGAIN to the clinic where they told me “he must be getting the flu” after they’d only test his heart rate for ten minutes of standing. Frustrated, I bought an iPHONE, Digifit connect 2, and a Garmin chest strap and paid for a Digifit iCardio download from itunes. I strapped that strap on my son, put the Connect2 into the bottom of the iphone, started the iCardio, and put the phone in my son’s cargo pants pocket and sent him to school. I met him at lunch and VOILA! VINDICATION. PROOF!!!! Without any PE, his heart rate was as high as 150 and averaging 120 for most of the morning just sitting in class!!!! I took my son and my iphone to the doctor and showed her the heart rate chart and Voila! That Visual chart got her attention and we left with a referral to a pediatric cardiologist who diagnosed him with…. POTS. But she doesn’t care for POTS patients so she is referring him to a neurologist….
I think Dr. Diana’s latest video is spot on.. we have so many more dysautonomic symptoms than “just POTS” that saying “I have dysautonomia” rather than “I have POTS” may be helpful for us.
I was diagnosed with EDS a little over a year ago. As a result of suspicion of Marfans, an echo was ordered.
I would have had zero idea that I could ever have any heart issues. I’ve always been skinny and just assumed, after being praised for being the epitomy of perfect health with my chronic low blood pressure, low body temp, and slight build. Actually, slight is an understatement, I’ve spent my life enduring suspicion of anorexia and/or bulemia – very irritating!
Anyway, I never attributed my inability to stand to my heart. While I noticed chest pain and severe shortness of breath, I never would have thought anything of it since I didn’t fit the profile for heart problems.
When I couldn’t get myself to the kitchen or to the bathroom, I assumed there was some other culprit. I would’ve suspected systemic poisoning before heart problems. Seriously!
As it stands, I do feel certain of the dysautonomia and I also know that my illogically erratic heart rate is part of the dysautonomia. I’m sorta in a situation like; “Who am I gonna tell?”. Who is going to give a crap or understand that?! I don’t have the desire to endure the abuse while I beg for understanding. I’ll just have to remain severely dysfunctional while the doctors all call me lazy or an exaggerator or someone who is thinking about bad things and bringing this onto myself. Or, ‘well, your bloodwork is normal’ – ‘Nah Nah Nuh Nah Nah!’ – ‘That’s right – in your face – your bloodwork is normal’. Years of that type of treatment has really taken its toll on me.
I think, for the dysautonomia, I’d have to see a specialist who is informed about it. I’m not sure I have the ‘fight’/energy/umph/reserves to seek help otherwise. I do thank you for your post and it may be worth trying what you have. It’s a huge challenge to figure out how to be so profoundly resourceful with multi-systemic dysfunction. Sadly, this is just the autonomic dysfunction portion.
Then there’s the GI, the CFS, the migraines, acute injuries/dislocations, the insane pressure in jaw and head – and TONS more. Many problems I am not even sure which systemic function for which to categorize. Like, does the pressure in jaw and head go with TMJD, hypothyroid, or now CCSVI. Never knowing where to start to achieve the coveted ‘slow the degenerative process’. THEN, TO HAVE TO FIGURE IT ALL OUT WHILE LIVING IT with the exhausted brain. It’s beyond insane. It’s really not cool!
You’re an inspiration to us all with your resourcefulness. God bless your little (well grown up cool kid now) boy for having a mom who would go to those lengths for him. Nobody on the face of this earth would do anything like that for me. My life knows only dependents so I am spread quite thin. <--- Not a sob story, just the simple facts. I will say that I am sick and tired of having the medically impossible happen to me and lacking comprehension of a suitable doctor. That does bother me a lot and has for many years now. It's been a really rough road. Prior to this 'road', I could go to the doctor for asthma, sinus infections, bronchitis or a UTI, be Rx an antibiotic, take it, and be just fine (with only a few exceptions). I never allowed the 'exceptions' to be an issue (assumed they were all well within normal limits) and didn't give much thought until now. Now, I have to consider that they are more likely to fit into a larger picture of a connective tissue disorder. Thanks, again, for your post. That may, potentially, be much needed help for me (hope others might benefit as well). During a time when I can focus, I will comprise and hopefully be able to use some of this info to begin to secure proper treatment. Every little bit helps (or so I hope and pray). Mind numbing to feel this horrid and have to work this hard - when it's impossible to work this hard when you feel so bad. Can you say, catch 22. 🙂
Frustrated, I bought an iPHONE, Digifit connect 2, and a Garmin chest strap and paid for a Digifit iCardio download from itunes. I strapped that strap on my son, put the Connect2 into the bottom of the iphone, started the iCardio, and put the phone in my son’s cargo pants pocket and sent him to school. I met him at lunch and VOILA! VINDICATION. PROOF!!!! Without any PE, his heart rate was as high as 150 and averaging 120 for most of the morning just sitting in class!!!! I took my son and my iphone to the doctor and showed her the heart rate chart and Voila! That Visual chart got her attention and we left with a referral to a pediatric cardiologist who diagnosed him with…. POTS. But she doesn’t care for POTS patients so she is referring him to a neurologist….
I think Dr. Diana’s latest video is spot on.. we have so many more dysautonomic symptoms than “just POTS” that saying “I have dysautonomia” rather than “I have POTS” may be helpful for us.
What a great idea; and so inspiring. Perhaps I will request the ACTUAL results of the Halter Monitor – meaning, not just the write up that says everything is normal. This at a min. should show a tachycardia and arrhythmia on standing. If I can’t get my hands on that information, then I may try what you did. ACTUALLY, WHAT YOU JUST SHARED MADE ME REMEMBER SOMETHING! OMG – I have ON VIDEO from a few years ago, me wearing a Polar heart rate monitor (with chest strap). The video shows CRAZY fluctuations in my heart rate, but unfortuanately, the Polar does not track/detect arrhythmias. I remember one video my HR went from something crazy like the 120’s to 45 just because I bent over.
I also have a video on my phone; I call it CRAZY VEINS. My veins – all over my body – are WAY distended with blood pooling in hands and feet. So much so, that it makes me SOB (short of breath). You have to see it to believe it. And when I raise my arm, which drains the blood that pooled in it, I am no longer SOB. I’m not technical, so I’m going to try to get some help and put the video on YouTube, and then I’ll post something here on the forum asking people to watch and comment. If my veins are that huge, I can only imagine what an MRV would look like!
It’s just so exhausting; the energy it will take to do all of this…but maybe this time it will pay off.
MJ
Cardionet was the company who issued my Holter Moniter. I received my detailed results directly from them. I faxed a request/release and they Fed Ex my entire ‘file’ directly to my home. I’ve just filed the results since I don’t know how to read them. Brachycardia, tachycardia, arrythmia, etc – it’s all there. My cardiologist said my heart was stable though. After a terrible echo, I wondered about this. I thought maybe they thought I was active like a normal person which caused the fluctuations. I am probably 10% of what I was, and at random (meaning that I can’t even effectively utilize the 10% that’s left) so I never know when I might have the clarity, energy, willing body to perform my will. It’s never nearly up to par but when I am not feeling like death warmed over, I practically ‘short circuit’ with my brain going nuts with the buzzillion things that I am unable to do – every item jockeying for position so that it might be able to finally be worked on. Sometimes I think I will have a good day and the ‘short circuit’ kicks in. I try to remain calm and conserve the energy of the good day that I anticipate. It always dissapates after a few hours and I’ve never actually gotten the day that I’d hoped for or become so excited about. Anyway, I digress. I’m just very stressed wishing things that I desperately wanted/needed to do were done – very stressed about it.
I’m going to be stumbling and staggering in an anxious fog to perform this ‘exciting’ task. I think my adult son will have to help me to figure it out.
Anyway, I’ve sorta forgotten where I was going but a main point was to suggest you contact the company who provided the Holter Monitor. My monitor was mailed to my home directly by the company. I’m not sure if that made me a client of theirs or if I am just legally entitled to receive my records upon request with proper paperwork. It was really easy though and I never thought too much about it. Figured my doctor might lose it – and I did wait 3 hours for them to find what I already had in my notebook. Ugh!
God bless and thank you for this post. I hope I will be able to find help within it.
BTW, anyone know of testing for dysautonomia. I’m pretty sure I’ll get a tilt table test but I am not convinced that my POTS reactions are completely regular – they may be – they may not. I just don’t know. Any suggestions? Or do you think I can do something like mentioned and take it to my cardiologist. My cardiologist should be an excellent doctor. I’m not sure he does much with EDS but he is so well educated. If I could figure out what to tell him or what to ask for, I do think he would help me.
I guess, for starters, I could ask him about Diamox?
Thoughts? Suggestions?
I think you should take some of the handouts from this web site to your doctor. You could also ask him to read The Driscoll Theory (I am about to order the paperback for docs to read) – which will cover Diamox, etc.
Also, I can TOTALLY relate to what you are calling a ‘short circuit’. I sit around and can’t really do much, thinking of all the things I’d like to do – like clean the bathroom, unload the dishwasher, vaccuum, etc.. And not very often, but once in a blue moon, I am surged with energy. My mind is quick (no brain fog), I am totally focussed and it goes something like this…at a million miles per hour, so read quickly. “Okay, what do I do first? Vaccuum, bath the dog, dust, load of laundry, kitchen, uh oh – slowing down a bit, better hurry…clean bathroom…uh oh it’s over.” At least I got those things done in such a short amount of time but then back to brain fog, slow motion, no energy, don’t want to do anything. I wonder if this is what Dr. Diana is referring to when she talks about the bipolar appearance. It’s like highs and lows of functioning (mostly lows for me).
PS Thanks for letting me know about getting the cardio report from the Halter Monitor company. I’ll put it on my very long list of things to do lol!
Hi ‘Give my daughter the shot’,
I would carry out a ‘Poor Man’s Tilt Test’ at home and take the results with you. It’s 8 years ago since I learned about this, so things might have changed a little, but if I remember correctly, it goes something like this:Quick ‘Poor Man’s Tilt Test’.
You’ll need:
Somewhere to lay down and a wall very closeby to lean against
BP pressure cuff
Pen & Paper
Someone to push the start button, write the results & symptoms and to help you
Procedure:
Breath normal and relax, do not talk (except to summon help, if you need it)
1) Lie still and rest for 15 minutes minutes, then take your blood pressure and pulse.
2) Sit up for 15 minutes, then take your blood pressure and pulse.
3) Stand up (against the wall), then take your blood pressure and pulse.
4) Stand quiet and still for 3 minutes, take your blood pressure and pulse.
5) Stand quiet and still for another 3 minutes take your blood pressure and pulse.
6) Stand quiet and still for another 3 minutes take your blood pressure and pulse.At point 3, if your pulse rises at least 30 bpm (beats per minute), you can bet you have POTS (Postural Orthostatic Tachycardia Syndrome). For some it might take until point 6.
I believe a 20 point drop in BP shows Orthostatic Intolerance (OI) too.
Regards
Barbara
(UK)Your blood pressure can also increase with POTS. That is the case for me. Mine increased by 34/32 on standing. You may want to video tape your results; my doctor did not believe me when I told her I went from 60 to 120’s on standing. Once they get it in their head that you’re a hypochondriac b/c of all the weird symptoms – game over. It was my ND (Naturopathic Doctor) that took my pulse and BP lying down and standing and confirmed the POTS. I just haven’t had any testing and the MD’s roll their eyes when I mention an ND diagnosed me.
I’ve been dealing with POTS for 8 months now (mine started abruptly after an episode of vertigo). When my GP did a Poor Man’s tilt test in January in his office, my heart jumped 40 bits when standing (he did it with an EKG machine hooked up). I’ve been taking a beta blocker and Desmopresin to control symptoms, plus Getorade. My tachycardia and upright time got better, however dizziness only seems to get worse. I went to a cardiologist in hopes for better treatment for POTS, and had a formal TTT at the hospital. Guess what… it came back normal. I can’t make any sense out of it… I still feel tachy (not all the time like in the beginning) and very very dizzy. Now my cardiologist wants me to stop beta blocker and the hospital made me to sign a form that I will. So frustrating, I feel like I’m back to square one. I’m totally confused.. One thing I know is that I’m not well. I guess my next option is a neurologist to do a full autonomic nervous system testing to look for dysautonomia vs. just POTS. It’s just so hard to find a good neurologist.
I stopped Propranalol and I’m back in bed today 🙁
Your blood pressure can also increase with POTS. That is the case for me. Mine increased by 34/32 on standing. You may want to video tape your results; my doctor did not believe me when I told her I went from 60 to 120’s on standing. Once they get it in their head that you’re a hypochondriac b/c of all the weird symptoms – game over. It was my ND (Naturopathic Doctor) that took my pulse and BP lying down and standing and confirmed the POTS. I just haven’t had any testing and the MD’s roll their eyes when I mention an ND diagnosed me.
Hi MJ,
Yes, you’re right, basically the body will try any means possible to keep the blood flowing to the brain and if it doesn’t raise the heart rate, it will raise the blood pressure instead.Strange that I forgot to mention that the blood pressure could also ‘go up’ because that’s actually what happens to me!! Over the almost 5 years, since I’ve been fitted with a Philadelphia collar 24/7, my POTS seems to have mutated to NMH (Neurally Mediated HypERtension). In that, my body now compensates for ‘lack of blood to the brain’ by raising my blood pressure (abnormally) when I stand up.
For instance, after writing about the Poor Man’s Tilt Test yesterday, today I thought I’d carry one out myself (just for the record) with help. The results were:
After laying for 15 mins 137/84 HR 73
Sitting for 15 mins 143/90 HR 68
Taken immediately upon standing 165/101 (erm, not good!) HR 80
After standing 3 mins 167/103 (way too high) HR 77
After standing another 3 mins 163/100 HR 78
After standing another 3 mins 158/103 HR 84Maybe the fact that I’d just had a shower and was ‘whacked’ had something to do with my high BP. Although I sit up to sleep and sit up to do almost everything, I do try and stand up many, many times a day for about 30 seconds or so, to make sure that I don’t loose my ability to do so but I don’t stay upright too long, as I start to sweat and feel unwell.
If you notice my heart-rate only jumped 12 points from sitting to standing, whereas to qualify for POTS it has to raise by 30 points (mine used to jump by at least 30 points, sitting to standing and when I first got up in the morning, it was commonplace to jump 50 points or more, certainly in 2004 when I was diagnosed!)
I see a lot about HypOtension, where people’s BP drops on standing but not much about HypERtension where BP raises on standing. Has anyone else’s POTS developed into NMH (Neurally Mediated HypERtension)?
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!Hi MJ,
Yes, you’re right, basically the body will try any means possible to keep the blood flowing to the brain and if it doesn’t raise the heart rate, it will raise the blood pressure instead.I see a lot about HypOtension, where people’s BP drops on standing but not much about HypERtension where BP raises on standing. Has anyone else’s POTS developed into NMH (Neurally Mediated HypERtension)?
I have both increased HR and increased BP on standing. It didn’t develop into this – it’s been like that from the start. Funny you should ask about hypertension on standing. I am curious if having CCSVI is related to high blood pressure on standing. For those with CCSVI (and dysautonomia), does your BP go up when you stand? I think Dr. D. said in a video that hers goes up on standing, and she has CCSVI. I believe I have CCSVI – but no testing yet – and my BP goes up on standing. Or, perhaps it has to do with having a CCI? Maybe if we do a survey, we could figure out what causes BP to go up on standing lol! Or, maybe Dr. Diana already knows. For those with high blood pressure on standing, can you list your symptoms/diagnoses/anything relevant (e.g. dysautomia, POTS, CCI, head/neck injury, etc.)?
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