My Poor Man's Tilt Table Test Results!

[MeSci]

@Karganeth mine was noted on CT scan, but I think it can be picked up on MRI as well.

I have a combination of almost no discs left between the lowest 3 vertabrae, osteophytes (bone spurs) which protude into the spinal canal and a thickening of the ligament that runs through the spinal canal. All of that could be seen on the CT scan. I think MRI does a better job of showing the nerves and whether there is any entrapment.

If you lose function completely of bladder or bowel that is a medical emergency (cauda equina syndrome) but otherwise a non urgent appointment with a doctor would be worthwhile if you think there is a possibility that this could be contributing to your symptoms.

I don't know anything about these specific problems but would just add that another advantage of MRI over CT is the lack of radiation exposure. CT gives quite a high dose. MRI doesn't involve any ionising radiation.

Also worth adding that bone problems can be due to mineral loss, which many of us suffer from (they tend to be lost in urine). I have been supplementing bone minerals for over 3 years and my bones and teeth seem stronger now. It may be worth getting your blood mineral levels checked.

 

[Karganeth]

@Sea

Ouch sounds complicatingly painful. Must not be very easy to move around!? Did the level of damage you have take a very long period to occur or was it relatively quick? Yeah, like you said it's just mainly causing me a huge amount of discomfort but doesn't need any emergency appointment so will wait until I see my Gastro!

@MeSci

Well I dunno about the doctors but when they offer to send me for a scan and make mention of CT scan I try to persuade them to send me for an MRI instead if it is possible. Well as far as I've been made aware, my blood tests always come back in normal range. Normal doesn't necessarily mean good as it's my understanding that everybody is unique but o'well what do I know.

I'd like to ask another question (I know too many of them). When I tilt my hip from side to side or put my fists just above my bottom and push forward to stretch, I get a sudden sensation that I'll leak urine and quickly have to stop my stretches to stop it from happening. Would this be another tick in the box for nerve interruption?

Thanks everyone!

 

[Sea]

It has taken some time to accrue the damage - although a physio once told me I had the spine of a 103 year old when I was in my late twenties. (about 20 years ago) A car accident at 21 began the process and osteoarthritis set in early. It is painful and does limit my mobility somewhat (no more horse riding for me even if my health improves I'd say).

It is however manageable most of the time. A painful flare lasting days can be created by something as simple as a misstep on uneven ground or a small hidden depression I step in unexpectedly when walking across grass. Thankfully nerves are not being continually compressed, only when in a flare, and that's when I get the bladder issues along with sciatica so I know they are related.

I don't know the answer to your question about stretching or tilting your hips but it certainly sounds plausible that it is having an effect on nerves.

 

[Karganeth]

It has taken some time to accrue the damage - although a physio once told me I had the spine of a 103 year old when I was in my late twenties. (about 20 years ago) A car accident at 21 began the process and osteoarthritis set in early. It is painful and does limit my mobility somewhat (no more horse riding for me even if my health improves I'd say).

It is however manageable most of the time. A painful flare lasting days can be created by something as simple as a misstep on uneven ground or a small hidden depression I step in unexpectedly when walking across grass. Thankfully nerves are not being continually compressed, only when in a flare, and that's when I get the bladder issues along with sciatica so I know they are related.

I don't know the answer to your question about stretching or tilting your hips but it certainly sounds plausible that it is having an effect on nerves.

Oh my god. If someone had told me that about my spine I'm not too sure how I'd have reacted in that situation, especially when in your early 20's. As I understand it, these 'disks' in the spine function similarly to a suspension system in a car? So every movement has to be with the utmost care and gentle stepping. Well all I can say is that I hope you continue to feel better. I'll update as and when news arrives on my part. Thanks again to everyone for being patient with me and answering my questions.

 

[Karganeth]

Well today was the day I had the appointment with a Psychiatrist. Long story short, I have no major depression or generalized anxiety but she suggested (well she seemed pretty convinced) I had a condition that I can't remember the name of, but from what she said, it meant that 'I have an obsession with wanting to find things wrong with me'. Oh and that I've become fixated with wanting to be referred from specialist to specialist even when nothing is being found wrong with me.

I can't quite understand why they keep telling me that they can't find anything wrong? Gastro are well aware of what I'm going through and are trying to find out the cause and Rheumatology have found damage and inflammation across my body so why do they keep insisting 'nothing can be found'? She said she'll recommend that my GP refers me to Neurology but won't force it upon him (her words), simply because it's what I want.

She believes by referring me, it will help to calm my nerves and put some perspective on the subject. She then asked me what if the Neuro appointment comes out clear? I simply said that I'll continue to pursue help until somebody can explain these symptoms and help treat them because as of now, the way I am, I cannot function.

I also said I don't want a referral that explicitly states 'please reassure this gentleman', because then the specialists don't even take you seriously. With every appointment I feel a little bit of my sanity wither away. If I'm ever to suffer from mental illness it'll be thanks to them. They're the ones driving me into that corner. I just don't know what to do anymore.

 

[kyzcreig]

Well today was the day I had the appointment with a Psychiatrist. Long story short, I have no major depression or generalized anxiety but she suggested (well she seemed pretty convinced) I had a condition that I can't remember the name of, but from what she said, it meant that 'I have an obsession with wanting to find things wrong with me'. Oh and that I've become fixated with wanting to be referred from specialist to specialist even when nothing is being found wrong with me.

I can't quite understand why they keep telling me that they can't find anything wrong? Gastro are well aware of what I'm going through and are trying to find out the cause and Rheumatology have found damage and inflammation across my body so why do they keep insisting 'nothing can be found'? She said she'll recommend that my GP refers me to Neurology but won't force it upon him (her words), simply because it's what I want.

She believes by referring me, it will help to calm my nerves and put some perspective on the subject. She then asked me what if the Neuro appointment comes out clear? I simply said that I'll continue to pursue help until somebody can explain these symptoms and help treat them because as of now, the way I am, I cannot function.

I also said I don't want a referral that explicitly states 'please reassure this gentleman', because then the specialists don't even take you seriously. With every appointment I feel a little bit of my sanity wither away. If I'm ever to suffer from mental illness it'll be thanks to them. They're the ones driving me into that corner. I just don't know what to do anymore.

Should point it back at them. "This is ridiculous. You're telling me I'm crazy, but ask yourself what's more crazy: that I can distinguish between what is real and what isn't OR that collective modern medicine has imperfect knowledge. I'm not making any assumptions but I've never been crazy before in my life and modern medicine has proven time and time again that they have imperfect knowledge or are just plain wrong. They drove the guy who said washing your hands might be a good idea to the nut house, where he died from sepsis because someone didn't wash their hands. The operative part of the word 'idiopathic' is idiot."

 

[Allyson]

Firstly a little background informat
I'm now 24 but my symptoms first hit when I was 19-20. The first thing I began suffering with was chronic abdominal bloating/swelling/distention and my legs felt heavy, so heavy infact that I would move forward by sweeping my feet rather than lifting them. I felt like food was getting stuck and I had a massive amount of gas production 24/7. Soon after my right pupil enlarged compared to my left and has stayed this way to this day. It has brought on a host of visual symptoms. I see flashing lights, blurred vision, and my eyes are very light sensitive oh and not to forget as soon as the change in my pupil happened I began noticing a swarm of white blood cells swimming in my vision (read about it on the web).

Soon after I began having pounding and rapid heart beats whenever I changed posture or if I had to do some light activity. I would get family to touch my chest when I had these episodes and they were all surprised at how hard and fast my heart beat. It was uncomfortable but I managed with them. Eventually they worsened and I found myself becoming increasingly sensitive to any form of activity and found that the only thing that made me feel better was lying down. Whenever I took a lie down I felt like I was in heaven. I bought myself a device that monitors my heart and began testing. Whenever I changed posture or had to clean or do any kind of activity my heart rate which is usually around 55-65 at resting would jump to 120-140 beats and each and every time I'd get light headed, my vision would go, I felt weak and felt it difficult to breathe. I also noticed an excessive increase in yawning and fatigue. Whenever I went for lectures, I had friends and tutors always mention I look pale and exhausted and my most rude symptom to some was the yawning. I couldn't help it. Eventually all these symptoms became very taxing on me and I found myself needing a lot of bed rest aka naps so I dropped out. I also had a part time job over the weekend that I was no longer able to maintain. So I dropped that too.

I then began having body temperature regulation issues. My nails are very often blue and my hands are cold to the core, including my feet. Even when I exercise, my hands and feet continue to stay cold. Shortly after I began struggling with concentration and felt 'dumb'. I can no longer understand things as well as I used to and I'm always at a loss for the word I seek to finish of a sentence. I used to be excellent at math and now I'm exactly the opposite.

Occassionally I lose consciousness for a few seconds while seated. This can happen several times in an hour. I have very painful neck and shoulder pain which is only alleviated when I lie down.. I've fainted several times in the shower and once as a kid at school. There's a lot more symptoms but because I'm now at home most of the time I've noticed my symptoms improve. It seems whenever I try to lead a normal life that requires routine my symptoms exasberate and I always end up having to retreat back home.

I've seen a few specialists.

Opthalmologist's comments:
Abnormally large pupils but other then the symptoms the patient describes, the eyes are in perfect health. Possible over-stimulation of Sympathetic Nervous System...

Gastroenterologist:
Endoscopies, biopsies, celiac disease testing, bacterial overgrowth etc - All either negative or inconclusive and the doctor has yet to comment what he thinks might be going wrong. Although acknowledges huge increase in abdomen size.

Can't get seen by anyone else because my GP's believe it is all anxiety and stress related. They won't refer me anywhere else as they say I'm currently being seen by my Gastroenterologist and I should wait to see that what that doctor's verdict is.

Okay so now to the results of the PTTT!

I altered my test a little and forced myself to stand for 40 minutes as I heard the TTT can last that long.
So I took a lie down and waited 10 minutes to find my blood pressure and resting heart rate. I then got up and checked again.



What do you guys think? What should I be pursuing?

Thank you very much for your time

not read all but if your HR jumps by 30 bpm that is POTS - and that causes the anxiety so it is medially based

more later racing off sorry t I was not clear on which readings were lying and which standing

have you checked out other EDS symptoms?

http://forum.notcrazy.net/index.php?topic=9571.0


more soon

ALly

 

[SDSue]

POTS and magnesium:

I recently saw a nephrologist who took my POTS/dysautonomia very seriously and has treated many dysautonomic patients. .

I have been on magnesium as migraine prevention for years. While we wait for blood work to check my Mg levels, the nephrologist recommended that I discontinue the Mg as it is a known vascular dilator. (seems so obvious now) Definitely something for POTS people to think about.

While GP's might be OK at screening general blood work for obvious abnormalities, it's amazing how the nephrologist could instantly analyze how different supplements and blood levels were interacting with one another and with my symptoms. After all, it's his job to keep those things balanced in his dialysis patients.

 

[Karganeth]

Hey Rising Forumers! Thanks very much for the links and helpful suggestions. I've come to report that I've finally gotten an appointment with the NHNN Hospital in London that deals with Autonomic issues. What's strange though is I decided to attempt another Poor man's tilt table test and the results are very different from the last. This one is only 10 minutes long. Here are the results:

Lying down:
115/67
p:52

standing up 0min:
133/79
p:55

standing up 2min:
122/83
p:61

standing up 4min:
126/75
p:58

standing up 6min:
120/77
p:68

standing up 8 min:
124/74
p:62

standing up 10 min:
125/75
p:61

Isn't my standing heart rate a little too low? It's almost as if my heart rate didn't even change. What's up with that? Are these results considered normal? I'm quite intrigued how my heart rate only increased 3 beats from lying to standing initially. Surprisingly I felt fine while standing. Thanks in advance and good health to you all!

 

[ukxmrv]

Do you mean this hospital because if so, you could be in for a terrible disappointment?

http://www.uclh.nhs.uk/ourservices/ourhospitals/nhnn/Pages/Home.aspx

Depending on where they send you and who your appointment is with you could be heading for another psychiatric related one. I speak from personal experience there. I've been a couple of times and it has always been a struggle. Both times they refused to test me or give me any meaningful examination. They refused a TTT. They also refused any testing after I had a head injury from a road traffic accident. My appointment turned into an attempt by them to blame my symptoms on psych issues. I had to pay for a private TTT with a Cardiologist.

This hospital has a terrible reputation for investigating issues related to PWME. I don't know if my POTS/OI symptoms were not investigated by them because I already had a ME dx but it certainly felt like it. It seems to be normal for PWME to be treated very badly there. I got off lightly.

Do you know who your appointment is with?

 

[Karganeth]

Do you mean this hospital because if so, you could be in for a terrible disappointment?

http://www.uclh.nhs.uk/ourservices/ourhospitals/nhnn/Pages/Home.aspx

Depending on where they send you and who your appointment is with you could be heading for another psychiatric related one. I speak from personal experience there. I've been a couple of times and it has always been a struggle. Both times they refused to test me or give me any meaningful examination. They refused a TTT. They also refused any testing after I had a head injury from a road traffic accident. My appointment turned into an attempt by them to blame my symptoms on psych issues. I had to pay for a private TTT with a Cardiologist.

This hospital has a terrible reputation for investigating issues related to PWME. I don't know if my POTS/OI symptoms were not investigated by them because I already had a ME dx but it certainly felt like it. It seems to be normal for PWME to be treated very badly there. I got off lightly.

Do you know who your appointment is with?

Wow that sounds bloody awful, but to be entirely honest I'm not too surprised. I took the liberty of reading the reviews posted about this hospital and they seem to receive quite an unhealthy amount of negative feedback. I really really hope my GP did not write in the referral that he believes it's all anxiety and stress, otherwise I know they will try to fob me off(Has happened multiple times before when seeing a specialist). I don't understand how they can do that before actually testing you first. I just checked the letter I received from the hospital about the appointment and it seems to mention 'Dr Iodice'. I googled that name and I think it might be Dr Valeria Iodice?

 

[Seven7]

@Karganeth I tried to start a chat to tell you about a few things. What country are you on??

I think the feeling of CFS is so unique and particular that nobody can't tell you there is nothing wrong with you because there is no way in heck that feeling like you are going to die is "normal" and that there is nothing wrong.

You have to repeat the TTT A LOT and in different circunstances,early day, mid day, during a crash....Different days.
2) You have to have the right kind of tests and they will show obnormalies, so do not dispair. Trust yourself. I did question my own thing at some point, today all my doctors agree something is terrible wrong and work with me not against me. I had to fire A LOT of idiots in the process.

 

[Valentijn]

@Karganeth - Most of Dr Iodice's research looks very biological. If there's any mention of psychological attributions for physical symptoms, I can't find it. Though she is "thanked" at the end of someone's slide show where people with hypermobility are accused of being panic-stricken hypochondriacs.

She's also the 2nd author (of many) listed for "JOINT HYPERMOBILITY AND AUTONOMIC HYPERACTIVITY: RELEVANCE TO THE EXPRESSION OF PSYCHIATRIC SYMPTOMS" which is somewhat described at www.sussexpartnership.nhs.uk/component/jdownloads/finish/2296/8618?Itemid=0 and the basic abstract is at http://jnnp.bmj.com/content/85/8/e3.40.abstract and a different abstract on page 81 of www.psychosomatic.org/anmeeting/PDF/Abstract2014.pdf . Basically they seem to think that autonomic issues can cause or exacerbate psychiatric problems, and "chronic fatigue" (and fibromyalgia, IBS, etc) are some of those psychiatric problems.

So if possible it would be a very good idea to avoid mentioning ME/CFS, but even if she knows about the diagnosis she still might take the autonomic aspect seriously as a "real" contributing factor to the "psychiatric" chronic fatigue

 

[Karganeth]

@Karganeth I tried to start a chat to tell you about a few things. What country are you on??

I think the feeling of CFS is so unique and particular that nobody can't tell you there is nothing wrong with you because there is no way in heck that feeling like you are going to die is "normal" and that there is nothing wrong.

You have to repeat the TTT A LOT and in different circunstances,early day, mid day, during a crash....Different days.
2) You have to have the right kind of tests and they will show obnormalies, so do not dispair. Trust yourself. I did question my own thing at some point, today all my doctors agree something is terrible wrong and work with me not against me. I had to fire A LOT of idiots in the process.

My apologies for not noticing the chat notifications. I didn't even realize it until you just mentioned it in your post. As for where I live, I'm in the United Kingdom more specifically London. I'm not so sure these specialists are going to let me repeat the TTT more than once. I've literally only been given a referral to this hospital because I went to see the Psychiatrist and so in return my doctor wanted to repay the favour. I completely agree and I do hope they are prepared to do a full autonomic evaluation as I have symptoms all over. Yeah I've been terribly worried that either they will do a PTTT in the clinic and decide from there if any further testing should be done or simply reiterate the anxiety part. Thanks for the vote of confidence, I feel much better!

@Karganeth - Most of Dr Iodice's research looks very biological. If there's any mention of psychological attributions for physical symptoms, I can't find it. Though she is "thanked" at the end of someone's slide show where people with hypermobility are accused of being panic-stricken hypochondriacs.

She's also the 2nd author (of many) listed for "JOINT HYPERMOBILITY AND AUTONOMIC HYPERACTIVITY: RELEVANCE TO THE EXPRESSION OF PSYCHIATRIC SYMPTOMS" which is somewhat described at www.sussexpartnership.nhs.uk/component/jdownloads/finish/2296/8618?Itemid=0 and the basic abstract is at http://jnnp.bmj.com/content/85/8/e3.40.abstract and a different abstract on page 81 of www.psychosomatic.org/anmeeting/PDF/Abstract2014.pdf . Basically they seem to think that autonomic issues can cause or exacerbate psychiatric problems, and "chronic fatigue" (and fibromyalgia, IBS, etc) are some of those psychiatric problems.

So if possible it would be a very good idea to avoid mentioning ME/CFS, but even if she knows about the diagnosis she still might take the autonomic aspect seriously as a "real" contributing factor to the "psychiatric" chronic fatigue

Thanks for the links Val. Looks like I'm in somewhat great hands! I'll be sure to keep all this in mind and if they're unwilling to do the tests required, I'll give them an offer they can't refuse!

Could someone be kind of enough to explain to me what the following means in POTS?

• Criteria not applicable for low resting heart rate

I generally have a low resting heart rate. It's usually in the low 50s and on a good day high 40s. How would this affect my possible diagnosis? What if my heart rate went to 85 when upright for example. Would that be confirmation of a POTS diagnosis? A heart rate of 85 seems miniscule compared to what the rest of you get. Would that still be classed as POTS? Thanks in advance!

 

[Karganeth]

Okay, reporting back. I underwent the 60 degree tilt table testing and symptom wise I mainly had pain in my feet which caused me to shift the position of my legs every 5-10 minutes which might've thrown off the results a little but it was unbearable so I had to do it. He didn't seem bothered by my constant shifting. I always asked if I could shift before I did. They really should just let you keep your footwear on. Also I was drenched in sweat at the end of the test. My shirt looked like it had been dunked into water. When I got off the table I had left a sweat patch of myself LOL. How embarrassing that was. I normally never sweat so easily. I had constant nausea and forceful palpitations throughout the 40 minutes. No dizziness, but my eyes were hurting like hell and my vision was blurry.

I usually always have low back, neck and shoulder pain but this time it wasn't there. I believe it was due to the fact that I was able to lean. Normally when I have to stand on my own accord the pain is always there, which is instantly relieved by lying down. My legs were shaking every so often, felt like the muscles were being jolted, most probably to shift the blood back up. All in all I was feeling good on that day. So I'm not too surprised by my lack of symptoms. I asked him at the end of the test what my heart rate was. He replied with "it was high" but refused to give any details. I was not given any spray under the tongue to exascerbate symptoms. instead he just took blood about 35 minutes in, seeing if I'd react to it. I'm guessing he was looking for the vasovagal reaction? I felt nothing in regards to him drawing blood.

I actually found the breathing tests the hardest by far. I always ended up losing my sight and getting dizzy after each one. When I got up after the breathing tests to go to the bathroom, I had to hold onto the walls. The ball/hand grip was ridicuolously difficult. My arm was shaking violently lol. The ice 'glove' test was excruciatingly painful. Though I refused to give in and told him to keep it for the duration he required to get a reading.

Based on my symptoms I do not believe I had any blood pressure crashes during tilt. So I think my blood pressure was stable throughout. I don't know about the rest of you, but I find standing of my own accord much harder than the tilt test as I get to lean on a back rest.

 

[Karganeth]

NHNN seem to be working very swiftly in seeing patients as quickly as possible. Even though I was being told by the clincal scientist who carried out the tests, the nurses and the receptionist that the waiting time to see a doctor is on average about 9 months. I have an appointment next month. That's only about a month away since I've had my testing. Very strange. I also only waited one month to do the testing when I was originally quoted 9 months. I guess the hospital has taken aboard all that patient feedback! Originally I was under the care of Dr. Iodice but now since the letter arrived it mentions Consultant DR. E Hagen. Although I'll more than likely be seen by a member of their team.

 

[Karganeth]

NHNN seem to be working very swiftly in seeing patients as quickly as possible. Even though I was being told by the clincal scientist who carried out the tests, the nurses and the receptionist that the waiting time to see a doctor is on average about 9 months. I have an appointment next month. That's only about a month away since I've had my testing. Very strange. I also only waited one month to do the testing when I was originally quoted 9 months. I guess the hospital has taken aboard all that patient feedback! Originally I was under the care of Dr. Iodice but now since the letter arrived it mentions Consultant DR. E Hagen. Although I'll more than likely be seen by a member of their team.

An update:

Dr E Hagen and her team appear to specialize in dysautonomia caused by spinal cord damage. I mentioned my rheumatologist is waiting for clinical evidence (two parts of the spine have to have damage I believe) as I'm investigated for Ankylosing Spondylitis (father has it). Since my last MRI scan (1 year ago) which found damage in my sacroilliac joint, I've developed a protrusion at T-8 of the spinal cord. I went to the GP who examined it and agreed there is a protrusion of some kind. She sent me off to have an X-RAY done which came back normal. I'm not convinced it's normal because when I touch that area it hurts, also if I learn on anything and that part gets pinched even the slightest it'll hurt. I will be having an MRI scan soon to double check.

 

[Tired of being sick]

@Karganeth

I do not know if anyone told you this as I did not read entire thread.

Those photos of your limbs are positive for livedo reticularis which is a skin condition indicating of underlying blood circulation problems found in POTS and other conditions as well..


Check these 2 threads out
they should give you a better grasp on blood circulation issues

The Importance of Orthostatic Intolerance in the Chronic Fatigue Syndrome

Have any of you POTS sufferers had Vascular Disease Screening TESTS done?

 

[Sea]

I've missed the updates to this thread until today. I'm glad you've been able to have the TTT Karganeth. Try to get hold of the actual results if possible and not just the doctor's report on it. You may have to fight for it. I really hope you get some useful answers from your doctors.

Regarding the POTS criteria not being applicable to a low resting heart rate, you can't use the 30 beat increase criteria to say you have POTS if your resting heart rate is low. That doesn't mean you can't have POTS though. My resting heart rate is in the low 50's. Sometimes when I stand up it goes to 60, sometimes the 80's and sometimes 120-150. I have standing symptoms both when it doesn't rise much and when it rises too much. The 80's are good. I don't think it is normal for it not to rise at all either.

 

[Karganeth]

@Tired of being sick

Thanks for that information. I actually used to get livedo reticularis as a child whenever I was cold. I would get very distinctive patterns. I remember referring to them as "spider webs" Thanks again for the links, I will dive into them asap!

@Sea

Thank you Sea. It's only taken 5 years of uphill battles but I've finally gotten a copy of the results that my GP got. It reads "...showing clear evidence of Postural Tachycardia Syndrome" The letter is very short but it touches on hypermobility. Dr Ingle suggests that I might be hypermobile based on my symptoms list. I'm not convinced because as far as my memory goes I've always been debilitatingly stiff. I could never and still can't squat because it feels like my knees are going to explode/implode from the pressure. I also can't kneel on my knees, it hurts like hell if they touch the floor/ground. I have constant back pain and feel like my spine is going to crack when walking outside. I have shoulder problems which have persisted since the age of 15 with an initial diagnosis of "Rotary Cuff Syndrome" to which a few years later changed to "Supraspinatus Tendonitis". To be honest I don't think they know what's wrong. All the joints in my body crack. I can crack my jaw, neck, fingers, wrists, hips, knees and feet. Although I am not hypermobile in any sense of the word. I am extremely stiff and have always been. Stretching is such a brief momentary relief that lasts no longer than 2 minutes until I am once again stiff as a stick man.