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Frustration with trying to get assessed for POTS (Read 9816 times)
Batik
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Frustration with trying to get assessed for POTS
03/10/13 at 06:07:50
 
I've been diagnosed with ME/CFS for 16 years, and I don't think anyone is disputing it.  I'm severely affected.  Over the last year or two, a lot of people have suggested to me that I may have POTS and/or a mast cell disorder.  The problem is getting it investigated.  (UK, so think NHS system rather than American insurance-based system.)  I've been diagnosed with dermographism, and between that and the assorted symptoms I get from things like standing up or eating, such as sudden tachycardia, blood pressure zooming around all over the place (particularly narrowed pulse pressure), breathing problems, pouring with sweat, becoming very itchy, blacking out, tinnitus, nausea, abdominal pain, and on one occasion, developing a rash, my doctors have put me on two antihistamines (alimemazine and cetirizine) and two H2 blockers (cimetidine and omeprazole).  I get those symptoms at other times too, they're just particularly marked at certain times.

I've noticed that my heart rate problems haven't been as bad since being on all these meds.  Drinking plenty of water and getting plenty of salt helps as well.  There isn't anyone I can discuss this with, however, and it wasn't raised at all when I had a 24 hour ECG (Holter Monitor) three months ago, with a view to testing for POTS.  Since I couldn't get any advice from doctors, I went off the meds for a couple of weeks beforehand, hoping that would show up the problems nicely, and also avoided salt and ate less carefully than usual (slightly longer gap without food, sugary dessert) on the day.  I ended up fainting, so I thought that would prove my case, and wasn't really worried about the fact that my heart was pounding a lot that day.  Unfortunately, as I've only just found out a few days ago, it didn't.  Apparently my resting heart rate went up to 90 that day, which meant that going up to 116 before collapsing wasn't sufficient (it's meant to be a rise of 30 to count as POTS), and I cannot get my GP to believe me when I say that normally my resting heart is in the 60s.  They should have enough data on that already from the number of times people have checked my heart rate!

So who knows what was going on that day.  Meanwhile, the cardiologist at the local hospital has dismissed it as "not POTS", and the specialist outside my district, whom we were hoping the cardiologist would refer me to, has also said that it doesn't look quite like POTS.  This is all based on an ECG when I was having a funny day, no one has asked me a single thing about symptoms or my blood pressure or anything else.

Firstly, does anyone know about whether the meds I'm on would indeed mask POTS symptoms, and whether stopping them might inadvertently cause things to go a bit odd?

Secondly, I'm thinking of emailing the second specialist to explain the situation.  Any idea what I should tell her?
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Dx: ME (severe), migraine, fibromyalgia, low blood pressure, dermographism, vulvodynia, IBS, interstitial cystitis, various other bits and bobs.
Suspected POTS and mast cell disorder. Cousin with EDS.
 
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lynda51
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Re: Frustration with trying to get assessed for POTS
Reply #1 - 03/11/13 at 11:26:37
 
Hi Batik,

I am sorry you are going through so much.  The types of symptoms you are explaining are very similar to mine.  I have a lot of trouble standing, even for short periods of time.  Like you, my pulse and BP can increase and sometimes decrease after I eat and I have lots of abdominal pain.  I have a diagnosis of mast cell activation disorder.  One of my mast cell doctors also did a preliminary test for POTS and my pulse went up 40 beats in just under 3 minutes. (It was a warm day and I had walked to my appointment).  IMO there are sooo many variables that can change the outcome of any one test at any given time.

It certainly sounds like you are doing all the right things.  Staying hydrated is critical.....I can't seem to get enough water in me so I have added salt to my diet as well.  It does help.

My mast cell specialist once said to me, "If you get the mast cell disease under control, the autonomic symptoms will definitely improve".  I have found that to be true!!  When I am in a "flare", my autonomic symptoms are awful.  A couple weeks ago I got up (slowly) took two steps, and collapsed.  That was a first!  But I knew my mast cell symptoms were escalating so I guess it made sense.

Since I am so new at the autonomic 'stuff', I hope someone else chimes in here.  I was given a diagnosis of dysautonomia in 2010 but at that time I was well enough to walk 4 miles a day and exercise helped the dysautonomia enough that I didn't need any further regiment.

Have you been on the dinet.org site?  That may be a good place to ask some questions.  

Have your doctors ruled out things like pheo and carcinoid?  Do you have any flushing?  Maybe someone from the UK will have some suggestions as to where to go for a possible assessment for a mast cell disease.

I wish I could answer your question about the meds affecting your heart rate but there are so many variables???

I wish you the best...keep us posted as to how you are doing. And hopefully someone will be able to give you more answers than I can!  Lynda

 
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MarciaB
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Re: Frustration with trying to get assessed for POTS
Reply #2 - 03/15/13 at 01:25:24
 
Have you tried doing your own poor man's tilt table test ? There's a thread on phoenix rising called diy pmttt that I started but others added to that may help.

My hr and bp only normalize if I've been completely supine for an hour. I tested this repeatedly so I could see what was happening.

Also, most if not all of us pwcs (person with cfs) have food and chemical intolerances that affect out bp and hr. Caffeine gets me everytime. High fructose corn syrup is another known trigger for me. I've been on a mostly paleo diet for 5 years so most triggers have been eliminated for years.  New ones keep emerging so that keeps me on guard.


I can't eat these foids an taje meds to countersct the effects.
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CFS,FM,Celiac,Ataxia,Dysautonomia,Paget's,Seizures,PelvicPain,Hyperinsulinemia ...Responding to Wahls diet, supps and MC meds.. kow ...    
 
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Batik
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Re: Frustration with trying to get assessed for POTS
Reply #3 - 03/16/13 at 02:36:37
 
Oh yes.  Lots of poor man's TTTs. The problem is that I've done them at home, so they don't count according to the doctors I've spoken to.  Nor, in fact, do the times when doctors and nurses have checked my HR, which I was hoping would prove my case that my resting HR is not usually around 90.  Here's an excerpt from the letter I'm composing to that specialist.

---------------------------------

Here is what is more typical for me, using a blood pressure monitor recommended by the British Heart Foundation.

Lying down - heart rate usually in 60s, sometimes 50s or 70s.
Sitting - heart rate usually 70s, sometimes 60s or 80s.
Standing - anywhere up to 120s.

Heart rate changes from lying to standing, various times in the morning, not standing up for long:

11 Feb - 63 to 101
17 Feb - 55 to 95
21 Feb - 62 to 96
8 March - 63 to 103
9 March - 64 to 98
10 March - 67 to 101

When I've managed to stay more or less upright for longer (not this week, as I'm getting a lot of pain in my feet at the moment), it's dropped a bit after that, and then taken anywhere from 2 to 15 min to rise that high again, although sometimes it's just steadily risen, sometimes going up to 123 or so.  My blood pressure usually goes all over the place after I stand up, e.g. from 109/62 to 142/116 at 4 min and then down again.  Usually my pulse pressure goes both up (e.g. to about 132/70) and down (e.g. to 90/75) after standing.  I also tend to get quite low blood pressure, sometimes down to 75/40, though I've had higher readings such as 167/103 and 152/62.  This is all since going on the antihistamines and some of it since going on the other meds - it was worse before this, but I wasn't monitoring it.  I've had quite a lot of collapses, numerous blackouts or whiteouts, and a few times where I think I actually lost consciousness during a fall.

----------------
(end of excerpt)
Yesterday I was having a really lousy day, due partly to not getting enough sleep (woke up early, heart thudding and breath tight, and the day just went downhill from there), and I think I may be running a bladder infection.  Temperature was all over the place, I've not been that chilled in a long time, and then suddenly I'd be roasting hot and pouring with sweat and would be desperately pulling off the big pile of blankets and electric heated blankets and such.  Anyway, that was one of the occasions when my resting HR actually was that high, mid-80s to 90.  So I tried another PMTTT.  I managed to stay standing for this one, and my HR went up to 109 after 1 min, 119 at 9 min, and kept rising until 123 at 20 min, at which point I gave up.  This is probably what would have happened on the day of the 24 hour ECG if I hadn't falled over after 2 min.

A lot of people have been saying I should get checked out for EDS.  It's starting to sound like I should.  Things that various people have mentioned which apply to me:

* I have a first cousin with EDS and some form of tachycardia.
* I can't do those moves listed as primary markers for hypermobility, but I can sit in a W.  When I was a teenager and exercising regularly (though mildly), I could sit in a W and then lie down as well.
* Local anaesthesia is a problem.  Last time I was at the dentist, she had to use four shots before it took.  (Is this really an EDS marker?!)  Also this could explain why lidocaine ointment does absolutely nothing for me.
* I've got dry eyes.  Relatively mild, at least compared to my mother, who has map dot fingerprint dystrophy and gets recurrent corneal erosions, which are hellish.  I really hope those aren't hereditary.
* I've been vaguely diagnosed with fibromyalgia, though only by my GP based on my reporting more pain.  This includes joint pain.  I've not seen a rheumatologist.
* I have tendon problems, not sure if that's relevant.  I have calcific tendinitis in both shoulders, and what I've been told is RSI (repetitive strain injury) in both hands and forearms.
* Flat feet.
* Problems with proprioception, especially when the ME is bad.  I never let people help me get down the stairs, for instance, it's too confusing and it makes me more likely to trip.  I need to hold the bannister in one hand, my walking stick with the other, and have good light and lots of space around me.  We've had problems with support workers helping me dress because of the proprioception stuff.

Support worker has arrived for the day, so I'll have to go now, but is that any help?
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Dx: ME (severe), migraine, fibromyalgia, low blood pressure, dermographism, vulvodynia, IBS, interstitial cystitis, various other bits and bobs.
Suspected POTS and mast cell disorder. Cousin with EDS.
 
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Lisa
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Re: Frustration with trying to get assessed for POTS
Reply #4 - 04/01/13 at 15:40:10
 
Hi Batik,

I'm sorry you are going through such difficulties trying to find answers!!  It's not an easy process, but just cause you are in the UK and working through the NHS doesn't mean its any more impossible than patients in any other part of the world!   The issue here isn't the system, it's the lack of doctors who KNOW what they are looking at!!

Listen, in the UK your highest authority on MC disorders is Dr. Clive Grattan.   He is a dermatologist working out of Norfolk.  Yes, he's through the NHS but he also will see you privately.    I think that even though money is tight, in your case it's worth investing in a preliminary appointment to get into seeing him and then going through the NHS to deal with this.   He will see patients and then refer them on to NHS colleagues who can take over and work with them.  I think that it's worth a try to do this.   Once you can get the MC disorder nailed down then the POTS may not be so hard to figure.   Plus, you've already noticed an improvement on the masto meds, - this is diagnostic for MCAS and should be taken into account!  

If you PM me I will send you Dr. Grattan's contact information.   I honestly think that if you saw him, you'd find ANSWERS!!!

Hope this helps!


Lisa
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Don´t forget, there is so much more to life than being sick!
 
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Batik
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Re: Frustration with trying to get assessed for POTS
Reply #5 - 04/02/13 at 02:43:48
 
I'm not remotely well enough to travel as far as Norfolk, I'm afraid.  And while I do have a bit of money saved up, I'm hoarding it in case my benefits don't come through (DLA renewal is in July), because then I might have to live off it.

Meanwhile, I rang the GP's surgery today and got one of the relatively good ones as duty doctor.  I explained that I've been seeing an improvement on cimetidine, but it gives me very bad breast pain, so could I have a different H2 blocker?  He agreed to put me on ranitidine, but only because of the itchy skin, because he said that I should be able to cope with the stomach pain with the omeprazole as well.  The result is that I'm getting ranitidine, which I gather is a good one to be on, so this was generally good, although it would be nice if they could look at why I'm still getting stomach pain.

Then I decided to chance bringing up the possible mast cell thing.  I mentioned that I've been diagnosed with dermographism, and that there was a bit of a mix-up when I saw the dermatologist in August (she decided that I must be getting itchy skin from taking codeine, but I wasn't taking codeine often enough for it to be causing this, and I had a big relationship breakup the next week so I just didn't chase it up), that I still get itchy despite two antihistamines and two H2 blockers, and that the itchiness follows a very distinctive pattern, such as occurring when I stand up together with other symptoms, and also getting itchy legs in the evening.  He said that this could be some sort of allergy, and that a mast cell disorder (and he confirmed that dermographism is one) isn't really anything, it's just like having an allergy.  He clearly considered that that was the end of it, that I didn't need investigations or treatments or anything.  After putting the phone down I realised that I should have said, "But allergies can kill you, people have epi-pens and such, and my reactions are worsening!"  I'm now trying to get hold of an allergy helpline to ask their advice on how to tackle this.  Because he's the first doctor who has at least admitted that dermographism is a mast cell problem, but I don't know how to push him into getting me checked out for it.  I mentioned that I was waiting to see a cardiologist about the collapsing, that we've been going round in circles for seven months and that I'm still waiting for a referral to go through, and he said something along the lines of, "Oh well, we should see how you do with that specialist then."  Yes, that will be a cardiologist.  Who probably won't even know how to assess me for POTS, let alone anything else.  This is getting ridiculous.
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Dx: ME (severe), migraine, fibromyalgia, low blood pressure, dermographism, vulvodynia, IBS, interstitial cystitis, various other bits and bobs.
Suspected POTS and mast cell disorder. Cousin with EDS.
 
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Batik
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Re: Frustration with trying to get assessed for POTS
Reply #6 - 05/17/13 at 08:55:51
 
I finally saw the cardiologist yesterday.  It went well in some respects, though I was pondering others.  I didn't even try to bring up mast cell issues, as he clearly knew nothing about ME/CFS let alone trickier conditions.  Anyway, I have been booked in for a tilt table test on Tuesday.  

There are a few things I'm concerned about, including hearing that they only test your BP and HR every five minutes, but the two main ones which I think may cause problems are a) I am running really, really cold at the moment, and you can't wear five layers when they're covering you with electrodes and such; b) I am also terribly itchy at the moment, and it flares up if I stand up.  You're meant to stand dead still, so shivering or wriggling about due to itchiness will Not Be A Good Idea.  Also I'll have stopped salt two days beforehand, and stopped eating and drinking 12 hours beforehand.  I'm not sure how that'll affect the itching.  It'll probably make the chilliness worse, as will the sleep deprivation (mornings.  Ick).

I've discovered that covering myself with calendula oil every day seems to help the itching.  Either that or I finally struck gold with the current antihistamine combo.  Anyway, I've got the support worker booked to come in earlier than usual in order to get me showered and oiled.  I'll bring a couple of fleece blankets with me too, as those cotton hospital ones are a joke, I've been known to shiver violently when under seven of them.  Does anyone have any other tips?
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Dx: ME (severe), migraine, fibromyalgia, low blood pressure, dermographism, vulvodynia, IBS, interstitial cystitis, various other bits and bobs.
Suspected POTS and mast cell disorder. Cousin with EDS.
 
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