18 Years Undiagnosed

[AmberK]

Hi everyone, I'm new here so thought I would give a background to my situation...

I became ill in 1993, and was diagnosed six months later with M.E. Some of my symptoms don't fit the M.E but after my diagnosis, doctors were reluctant to investigate further. Last September, I went to see a doctor over a separate issue with eczema, and she began to read through my medical notes. She was shocked that I hadn't had further investigations, and so started the ball rolling to find out what might be causing the main symptoms. At one stage it was thought that I had Addisons disease, but I tested negative for that last year.

POTS has repeatedly come up over the years when I've tried desperately to get some answers, but until I have the relevant tests for anything, I'm still left uncertain as to what on earth is happening to my body. I don't expect a miracle cure, but am desperate for some kind of medication to at least ease the symptoms. Also, to just know what is really wrong with me would be fantastic.

I spend most of my days horizontal in bed, and long ago stopped trying to do things like go out for meals with friends or family, as the disequilibrium is severe and therefore makes sitting upright in chairs very difficult. I've been very blessed in other areas of my life, and eight years ago met my now husband on an online M.E support group. I'm 36, and having children is looking increasingly unlikely, but I'm lucky to have a wonderful 11 year old step daughter.

The first symptom that I experienced was fainting, and fainted many times over the next couple of years. These days, thanks to making adaptations to my life, the faints are far less often, but I still have very frequent disequilibrium and frequent dizzy spells that feel quite violent but are generally short lived each time.

Early this year I was referred to a consultant who treats people with POTS, and was hopeful of some answers finally. He stated that I could very well have POTS but that he was baffled as to why I would want to know as he couldn't do anything for me if it is. His whole manner was pretty upsetting and he showed no sign of awareness of what it might be like to have had such a limiting illness for almost two decades. He referred me for a 24 hour blood pressure test and a 24 hour ECG, and then after thinking that I had been dropped again, I suddenly got a letter through the post yesterday saying that I am to have a tilt table test next month.

My questions are many, but I wont bombard you all with them now, as I'm sure this post is plenty long enough for you all already! The main thing that I would like to ask though, is if any of you had to do any preparation for your test? On my hospital letter there is no mention of fasting, and yet I've read elsewhere online that if you eat before the test it can produce inaccurate results. I really don't want to have waited for this for so long and then mess up the test by not preparing as I should. Any advice would be very appreciated. Thank you for reading.

[McKenzie]

Odd that they didn't tell you to fast prior to the tilt table test. I just had one in December and was told to fast from food AND water after midnight. I do think it would make a huge difference. One other lesson learned: over the years, you have learned to manage your symptoms well. I found myself going into survival mode during my test, but then realized that I had to stop fighting it and just let the faint come. Don't fight it... Otherwise you may not get a proper diagnosis.

I'm sorry you've lived with this so long with little help from your doctors. Praying for answers for you!

Once I got a diagnosis and started on some meds, I started improving, slow, but still improving

[Chaos]

I was told to fast before my TTT(s) as well. You might want to call and ask them as different facilities may have different protocols.

Sorry you've had such an incredibly long journey to try to find answers. Given how high the overlap is between people with ME and orthostatic intolerance (OI), it wouldn't surprise me to hear that you have both issues.

[AmberK]

Thanks so much Chaos and McKenzie for your replies. I will give the hospital a ring this afternoon and ask about the fasting. Thanks for the advice, McKenzie. I am dreading the test, but probably more at the possibility of it being another negative and still not knowing what's wrong with me, than anything else. I very rarely stand in one spot for more than a few seconds, as it makes me feel so ill so that part I'm definitely dreading, but it will be so worth it if I get some answers.

[HopeSprings]

Amber - I can relate very much to your situation. I became ill in the 90's and saw many many Dr's - one finally suggested "CFS," but there was really nowhere to go with this diagnosis at the time. I was not diagnosed with POTS until 2007 (after many more Doctors!). It's true that for many it's difficult to treat, but I don't understand why Doctors don't understand our need to know! Plus it seems many people do respond to medication and non medication therapies - if you can find something that works for you. But you won't know until you try, right? - silly Doctor. Good luck in getting some answers and hopefully some help.

[MomtoGiuliana]

I agree with what others have said that treatment is certainly possible. It seems odd that an expert in POTS would indicate differently. Just as one resource, if you have not looked at it, there is a video DINET created a couple of yrs ago about POTS, called "Changes", that includes info on the variety of treatments that may work. It's on Youtube.

[martiz]

Just because he said he was a POTS expert, doesn't mean he was. But I have had a cardiologist who does autonomic testing not offer much in terms of treatment or even lifestyle changes.

Welcome Amber, sorry you are here. I am a new member here but have learned a lot already.

I would fast whether the hospital tells you not to. I recently had a TTT but completely forgot to fast and it showed normal. The previous two were abnormal and I had fasted. So, that can make a difference.

The nice thing about fainting on a TTT is that the test is over after you faint. Since I had forgotten to fast this last time, the test lasted the FULL 30 minutes. I didn't think I would make it through!!! So, let it happen, don't fight it. Don't move your legs to compensate.

Keep pushing for answers.

Marti

[Guest Alex]

Hi Amber,

it might be a good idea for you to call the testing facility. I'm pretty sure they will advise you to fast otherwise the results of the test might be inconclusive.

the day of my test I had a ct scan before and had to drink 2 glasses of some contrast solution in the morning (around 10 AM). My ttt was done around 3PM, and I'm pretty sure that I had eliminated all the liquid I had in the morning. Still the technicians had to double check with the dr as they did not want to continue with the test. "Luckily" the dr gave his OK, and I fainted 6 min into the test. Like Marti said, when/if the feeling comes, don't fight it, as the worst part of the test will be over once that happens. In my case after fainting they still tested my reactions to 3 different substances they gave me by IV - HR, BP, oxygen saturation, ECG, and blood work for each of the 3 substances - forgot their names.

Good luck with the test and let us know how it went.

Alex

[AmberK]

Thanks so much everyone for your advice and your warm welcomes. I didn't get a chance to phone the hospital in the end today but will do on Monday. I would much rather fast and get the right results than always be wondering "what if?". My TTT is at 2pm in the afternoon though, so I'm not sure if it's wise to go without food or drink for the entire time before that? I've noticed on several posts on this forum, people referring to more than one TTT. If this one is negative, I'm pretty sure they're going to stop this route of investigation. Why do so many of you have more than one, especially after getting a positive?

Thanks for mentioning the youtube clip, MomtoGiuliana, I've found and bookmarked it and will watch it as soon as there's some peace in the house

I really do appreciate the warm welcome. I've sometimes felt like such a freak as my symptoms are so "odd". IF it is POTS, it would explain so much. By finding this forum, I finally feel like I've found some people who "get it", even if it's not whatever is wrong with me. Thank you.

[Guest Alex]

Amber,

my test was at 3 PM and if not for the CT scan earlier that day and the 2 cups of yucky liquid, I would have had nothing to eat or drink that day.

Again, check with the test center, they're the best to answer these questions.

Keeping my fingers crossed for you.

Alex

[Chaos]

Amber- There some studies recently that others have sited (I haven't found them) but they mentioned that one out of Norway found that people with ME/CFS and POTS had the same orthostatic intolerance issues as people with "just" ME/CFS. A lot of the researchers are apparently saying they are all part of the same issue, just different names.

As to why I personally had more than one TTT... I had the first one locally which I failed spectacularly. ( I was also sure it would be another negative test so was worried a bit about "proving" myself). That one lasted 38 minutes because as others have said, you are so used to doing compensatory movements (like tightening my thigh muscles, wiggling my toes etc) that I fought it a lot longer than I probably had to. I never fainted but did have my BP "disappear" for several minutes. Guess they knew I wasn't dead because I was still responding to them somewhat but it was a bit dramatic.

Then the local doc referred me to Cleveland Clinic, where they repeated the test along with several other ones not done locally. It was not convenient to follow with CC because of my location, so went to Mayo and they re-did all the tests again. My neuro at Mayo has also repeated the TTT to check for med levels and response to meds to help give him info related to med management.

We do "get it" here because I think most all of us have been in that same boat with you of being "odd". I've told my PCP for years that he really needs an ICD9 code of "weird" just for me. LOL

[we_don't_look_sick]

I thought Dr's wanted us to fast before the TTT so we were less likely to throw up on them! I was told to make sure I took midodrine before the second test (to see if it helped prevent the faint).

I think I had two TTT because the results of the first one were so severe, he was considering a pacemaker and a 2nd TTT was needed by insurance to confirm, but I am not sure.

[HopeSprings]

I've told my PCP for years that he really needs an ICD9 code of "weird" just for me. LOL

Cute! I might have to borrow that one.

[AmberK]

Thanks everyone As I await phoning the hospital tomorrow, I'm thinking it may be a good idea to fast anyway. My concern is that if I phone the hospital and the receptionist tells me I don't need to fast because she hasn't been told to tell me to, then maybe I will be risking a false negative. I am apprehensive about going without food or drink for that long, as my symptoms definitely worsen when I'm hungry or thirsty, but would rather do this than risk a false negative.

My hopes really have raised that they may finally be about to find out what's been affecting my life so severely for the last 18 years, and I'm trying to stamp on those hopes a bit as I got this way last year when they were almost certain that it was Addison's Disease and then I got a negative. If only the consultants had some insight into just how much all this affects you emotionally as well as physically, I bet they would be a little more sensitive at times.

Again, thank you all so much for your support. I've been told this is the final route in the testing as they don't know what else to test for if it's negative, so I will return back to the diagnosis of M.E and anxiety. The prospect of that feels such a heavy weight on my shoulders at the moment, as I know people with both of those conditions who don't experience these symptoms. I'm feeling incredibly emotional about all of this right now, and your warm welcome has helped a lot.

[corina]

good luck on your test Amber!

[AmberK]

Thanks Corina

[chipper]

The best time for a TTT is early morning and no food after midnight. This was Dr. Coghlan's opinion. The cleveland clinic does them most of the day and said nothing about fasting. Hope everything goes good and wishing you the best.

[AmberK]

Thanks Mary

I've just received the results of my 24 hour ECG and 24 hour Blood Pressure monitor tests. The ECG showed heart rates varying from 67 bpm to 127 bpm, so this is why they decided to refer me for a tilt table test. The Blood Pressure, however, didn't dip below 96 throughout the 24 hour test.

The consultant has stated that it could show signs of autonomic vagal neuropathy, but surely the blood pressure would have to be low too? I'm confused. I did wonder why they carried out these tests, as they tell you to go about your usual daily activities, which for me is largely laying propped up slightly in bed, so I will be glad to have the tilt table test, but wonder if I should lower my hopes at the outcome, given the results of my 24 hour tests?