Postural orthostatic tachycardia syndrome

fel

Has anyone any information on postural orthostatic tachycardia syndrome? Is there any good consultant who treats this condition in Ireland or who actually understands the condition? Many thanks for your help.

kangaroo

fel wrote: »

Has anyone any information on postural orthostatic tachycardia syndrome? Is there any good consultant who treats this condition in Ireland or who actually understands the condition? Many thanks for your help.

Have you had a tilt table test yet? (one can get an idea of course by doing a standing test).

fel

Thank you for your reply. Tilt test was not necessary as my heart rate went from 62 to 184 when just changing from a supine position to a sitting position in hospital bed.This confirmed diagnosis. I have severe heart tightness, pain and breathlessness .Is this common with POTS? Any movement is debilating. Please help. Taking high salt ,low carb. diet. Drinking lots of water and isotonic drinks.

kangaroo

The sort of doctors that are going to be interested are those that use tilt tables.
Dr Rose Anne Kenny is one person who uses a tilt table - she's director of the new Falls and Blackout Unit at St. James's Hospital, Dublin and previously worked in Newcastle, England which has a very good autonomic unit from what I hear. http://healthsciences.tcd.ie/pls/public/staff.detail?p_unit=medical_gerontology&p_name=rkenny

There is more interest in conditions connected with autonomic dysfunction e.g. POTS, Neurally Mediated Hypotension in the US than Ireland from what I've seen over the last 10-15 years but I'll be interested to see if there is anyone know with a particular interest now. I'd a tilt test in the Private Mater in 1998 but they just tested for blood presure (NMH) while presumably now they'd also test the heart rate.

POTS Place http://www.dinet.org/ I know has an active international forum.

Another one that might interest some people is: http://www.pediatricnetwork.org/ for people with Chronic Fatigue Syndrome, Fibromyalgia, Orthostatic Intolerance, Neurally Mediated Hypotension, POTS, syncope, and related conditions. They've moved now now to an E-mail format rather than the forum. Although it says pediatric, there would certainly be people there in their 20s, perhaps older.

Do you think it's associated with any particular condition in your case? POTS is common in some conditions. ME/Chronic Fatigue Syndrome is the one I am most familiar with. Some treatments that are recommended for POTS don't really suit ME/CFS e.g. lots of exercise.

Miss Lockhart

My GP thought I had POTS syndrome and I was referred to Richard Sheahan - he is a cardiologist in Beaumont and Hermitage Medical Clinic.

I had the Tilt Table Test, but it was performed by a geriatrician :eek: since that's who is the relevant expert in Beaumont apparantly. The test results were inconclusive.

In the end I have been diagnosed with another condition (Inappropriate Sinus Tachycardia - basically a diagnosis of exclusion) but I would recommend my doctor anyway - he was very thorough and seemed to know what he was talking about in terms of POTS too.

I have the same symptoms as you - chest tightness and pain, breathlessness, dizzy etc. and my heartrate is over 150 all the time.

ppink

PRofessor Kenny in James's Falls and Blackout unit is definately the place to go for any help imo. They also do tilt tests in Clonmel and Bantry? as far as i know but Prof Kenny is def the expert in Ireland (I think she developed the tilt test too).
they are excellent in that clinic and very understanding and human!!

Dinet.org seems to be the best site out there for this condition.

IF you want any other info pm me

fel

Many thanks for all your helpful replies. I was diagnosed with POTS following a viral infection. Several cardiologists and other consultants were unable to make a diagnosis. They kept telling me that no disease had so many symptoms!!! (Even after being shown a written medical report from a consultant in a different hospital who made the diagnosis!!) A neurologist prescribed pain relief for neuropathic pain which is not effective for crushing heart pain and breathlessness. Once again many thanks for all your help which is greatly appreciated.

kangaroo

fel wrote: »

Many thanks for all your helpful replies. I was diagnosed with POTS following a viral infection. Several cardiologists and other consultants were unable to make a diagnosis. They kept telling me that no disease had so many symptoms!!! (Even after being shown a written medical report from a consultant in a different hospital who made the diagnosis!!) A neurologist prescribed pain relief for neuropathic pain which is not effective for crushing heart pain and breathlessness. Once again many thanks for all your help which is greatly appreciated.

When did you have the infection? Post-Viral Fatigue Syndrome is basically another name for M.E. or Chronic Fatigue Syndrome. As I said, a few studies have found quite high rates of POTS in ME/CFS. You will often hear that people with ME/CFS have to lie down quite a lot (some are bedbound) - that's because of orthostatic intolerance.

However, during an infection and for a little time after it, one can dramatic symptoms (such as weakness and dizziness on standing) but they can pass pretty quickly.

fel

I got sick 4 months ago with crushing pains in the kidneys, chest pain ,breathlessness, delay in urination ,violent tremors throughout my body,severe night sweats ,irregular heartbeat and tachycardia. As I was still unwell after several weeks ,my consultant said I had post viral syndrome. He injected me with a long acting steroid into my thigh .He said this would speed up my recovery. However, within an hour I was crushed with heart pain and breathlessness .The symptoms became much worse. After several weeks and many hospitals and consultants later ,I was diagnosed with POTS. I feel that the steroid injection definetely aggravated the condition.

kangaroo

Did they test you for any specific viruses? Just curious. GPs probably don't tend to I think but you also saw consultants fairly early.

fel

Consultants did not test for a virus. The consultant who gave the steroid injection presumed I had a virus due to various symptoms!! That was how he made his diagnosis!! Told me to go home and go out for a few drinks!!

Jeweliette

Hi Fel

I have severe POTS that I contracted after a viral infection too. I have all the same kind of symptoms as you and am usually very lightheaded, dizzy and I am permanently exhausted and feeling really ill with it.There is such a long list of ways it affects me. It's extremely disabling and quite frightening too at times.

As part of my POTS I also have Neurally Mediated Hypotension and Neuro Cardiogenic Syncope.That means that standing up causes my blood pressure to drop very low. Sometimes it is so low that it is unrecordable. Have you got this too ? If you are unsure that's one reason why it may be a good idea for you to have a tilt table test as it will pick this up.

I've tried several different medications but none of them have worked for me. I think mainly because I'm very sensitive to medications but also because the medications that slow your heart rate also seem to drop your blood pressure and that does not suit me at all.
Have you tried beta blockers ? They seem to be the best tolerated treatment that I have read about. Other treatments options then depend on whether you have the blood pressure issue as part of your condition.

I was diagnosed like you initially because my pulse shot up very quickly when I moved from lying to sitting or standing. My blood pressure also was dropping immediately too and continuing to remain very low when I was upright. I had a tilt table test done eventually by Professor Lyons in Limerick. He is a prof of geriatrics but also specialises in this area.

Most doctors don't seem to know much about POTS or NMH. I count myself lucky that my main Dr (not prof lyons) is understanding about the fact that I am feeling really awful and is sympathetic to it.He never says things like "go for a few drinks" etc! (You must've felt like strangling him! Also alcohol makes it worse in my experience).I had a second tilt table test done recently and the cardiologist who performed it said he'd never seen it before.

I do the same kind of diet as you and find that I can only eat very small meals. If I eat too much it makes my heart race and my bp drop too.I also have lots of salt in my diet! Drinking too much liquid in the day can make it worse for me though for some reason. I walk a fine line with that! The other thing some people find helps is medical grade support tights or stockings. Not very sexy but then neither is feeling like absolute crap. They make them for men as well as women. Some people find them excellent.They're worth a try to see if they suit you.

There is some good research going on in the US. It's all a difficult to follow but at least people are looking at the issue which is comforting.
You can look at a recent seminar given on it here : http://www.youtube.com/watch?v=oal5S967N80
It's on POTS in ME/CFS but is worth looking at as as you'll see from the video the symptoms overlap hugely/are almost the same!

www.potsplace.com has already been recommended and you should definitely check it out as it is a lifesaver!!Everyone is very helpful and friendly and it's excellent for all those "is this normal ???" questions you find yourself dealing with, with this illness!
PM me if you want to talk anytime and please let us know if you find anything that helps at all!!

kangaroo

I know alcohol intolerance is very common in ME/CFS/PVFS/PVS (63.7% with the Holmes CFS definition and 59.5% with the Fukuda CFS definition according to: A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.). I don't think alcohol intolerance is necessarily part of POTS.

This brings me back to the point of suggesting people find out if their POTS is connected to another condition - I know there are people with lots of conditions on POTS Place. I know in my case when I had the diagnosis of ME/CFS, I was better able to understand and control the other symtpoms - the general advice for specific symptoms e.g. to exercise, had caused more problems because I had ME. Some other conditions which are associated with POTS can also have drugs to help them. It might be better to think of POTS like a symptom (e.g. like headaches or joint pain) which can be associated with various conditions rather than simply looked at in isolation. I'm not an expert on POTS - just giving my tuppenceworth from experience.

ppink

I just have to agree totally with Kangaroo here. For me the POTS/BP issues were coming on the back of another illness. From reading about it dysautonomia can occur alongside a lot of other things so it is definately worth checking it out.

Jeweliette

kangaroo wrote: »

The sort of doctors that are going to be interested are those that use tilt tables.
Dr Rose Anne Kenny is one person who uses a tilt table - she's director of the new Falls and Blackout Unit at St. James's Hospital, Dublin and previously worked in Newcastle, England which has a very good autonomic unit from what I hear. http://healthsciences.tcd.ie/pls/public/staff.detail?p_unit=medical_gerontology&p_name=rkenny

.

Kangaroo do you know of anybody with post viral POTS or POTS as part of ME/CFS who has attended this doctor? Do you know if she is understanding of the condition?

Ideally I would rather not trek up to Dublin to be told to go for a few drinks or to take up running etc.

fel

Many thanks for all your brilliant suggestions. I find the POTS information on the internet to be very helpful. Support tights help to prevent blood pooling. I also use ankle weights a few times a day to help venus flow. Beta blockers do not suit me. Has anyone got constant pain and tightness concentrated in the heart area and breathlessness ? I am taking tablets for neurological pain but they do not help this heart pain.

kangaroo

Jeweliette wrote: »

Kangaroo do you know of anybody with post viral POTS or POTS as part of ME/CFS who has attended this doctor? Do you know if she is understanding of the condition?

Ideally I would rather not trek up to Dublin to be told to go for a few drinks or to take up running etc.

Hi Jeweliette,

I'm afraid I don't recall anybody saying anything (although to be technically correct, that is not the same as me not knowing anybody who has gone).

So my knowledge of her has largely been picked up by quickly looking through her PubMed-record http://www.ncbi.nlm.nih.gov/pubmed?term=%22Kenny%20RA%22%5BAuthor%5D

I think she could be useful if people with ME/CFS/PVFS/PVS want some objective evidence e.g. for a disability case and/or even to convince other doubters. (The US government in 1999 issued a ruling that they would accept evidence from tilt tables as a source of objective evidence if people with CFS were applying for disability benefits).

I'm guessing she may be able to give useful advice and/or drugs to some patients with ME/CFS/PVFS/PVS and POTS symptoms but I don't know what drugs she might prescribe. I don’t know whether she would prescribe Midodrine, for example, or Ivabradine (Procoralan). I know somebody from outside Dublin who was prescribed the latter drug by another doctor and she feels it helps her POTS a bit. She gets it on the medical card.

However, this paper makes me slightly nervous about what her views might be with regard to some patients:

Europace. 2003 Jul;5(3):299-301.

Cognitive behavioural therapy as a potential treatment for vasovagal/neurocardiogenic syncope--a pilot study.

Newton JL, Kenny RA, Baker CR.

Cardiovascular Investigation Unit/Falls and Syncope Service, Royal Victoria Infirmary, University of Newcastle upon Tyne, UK. julianewton@blueyonder.co.uk

Abstract

Vasovagal syncope (VVS) is an exaggerated tendency to the common faint that affects any age group. Conventional treatment is non-specific and involves strategies to increase blood pressure. Patients with VVS are often unable to work or complete education due to actual, or fear of, syncopal symptoms. Here we present a series of nine patients with VVS whose symptoms had proved resistant to conventional treatments where intervention with cognitive behavioural therapy (CBT) led to significant reductions in reported syncopal episodes and consultations at our unit. All subjects post-intervention were able to return to work or schooling. CBT is an effective treatment in those with difficult to manage VVS. Randomized controlled trials are needed.

Full free text at: http://europace.oxfordjournals.org/content/5/3/299.long

However, the CBT does not appear to be based on Graded Exercise Therapy.

ppink

I have had midodrine perscribed to me by Proff Kenny.

The CBT is something that I did do and that was to deal with the crazy worry I had about syncope. Worry alone can bring on syncopal episodes....for me anyway, and to be honest in the midst of it you do not realise it. The CBT was a massive help for this, before it I was terrified to anywhere alone but now after a few months I am fine. I also have nto had another syncopal episode since.

When I attended the clinic I never had the "usual" kind of treatment of being told to go home and live with it......that i have had elsewhere! They did everything possible to help. They do try to sort it initially without meds which I think is the preferrable case for most people.
I dont know about ME etc or their knowledge of this but you could always phone them and ask, the whole team there are very helpful. they could also have an ME expert in James who could work together with the Falls and Blackout Clinic

Jeweliette

Hi Kangaroo . Thank you for your time and sharing that information. That's very useful to be aware of. I've tried midodrine and florineff before but the side effects for me were too extreme to continue with.

Ppink thanks for taking the time to reply and tell about your experience. I'm so glad your treatment helped you. It's very interesting to hear how the CBT worked for you too. I will talk to my doctor about trying that unit and see if he thinks that it would be a good idea.

kangaroo

Earlier I mentioned that I didn't think alcohol intolerance is necessarily part of POTS. I was talking to somebody there who has POTS as part of their ME. She has followed some POTS discussions in POTS Place where one comes across all sorts of people with POTS (i.e. along with lots of other conditions and none). She thinks alcohol intolerance is very/very very common in POTS. I've had a quick look and saw two articles warning against alcohol. So perhaps nothing much diagnostically can be read into alcohol intolerance accompanying POTS.

Are there people with POTS here who can have a few drinks?

fel

Hi Kangaroo,
I have read lots of articles about POTS. Alcohol consumption is not advised as it can dilate blood vessels causing blood to pool. As you know this is a major problem with POTS. I note some people can tolerate caffeine. Others find it aggravates symptoms. I avoid all caffeine.

kangaroo

(Didn't mean for this to be so long)

fel wrote: »

Hi Kangaroo,
I have read lots of articles about POTS. Alcohol consumption is not advised as it can dilate blood vessels causing blood to pool. As you know this is a major problem with POTS. I note some people can tolerate caffeine. Others find it aggravates symptoms. I avoid all caffeine.

Thanks fel.

However, what websites advise is not the same as everyone having the same bad reaction to alcohol. Something may not be doing you good but you mightn't necessarily notice it that much.

I know lots of people with ME/CFS who have quite strong reactions to alcohol - they can feel quite poisoned the next day from a drink or two (or sometimes less) (I made a decision not to drink alcohol before I got ME so don't have personal experience although I have found a couple in tinctures quite strong/they don't agree with me so I think I may have alcohol intolerance). A Dutch study of 247 patients with CFS found only 1 had an unhealthy alcohol intake and a bigger than normal group abstained - authors suggested this was due to alcohol intolerance which was found before.

People with ME/CFS with alcohol intolerance includes at least one person with ME/CFS and POTS (research figures show lots of people with ME/CFS have POTS but most people in Ireland don't get tested for it).

So that is what I was trying to get at - does everyone reading this thread who has POTS feel bad after drinking alcohol and if so, is this from drinking relatively small amounts of alcohol (e.g. a few units or even one unit or less) or more from larger amounts.

I see for example that the POTS page on Wikipedia recommends that everyone should exercise but I know people with ME and POTS who have not found such advice helpful - sometimes generalisations can be made about conditions but not everyone is the same. That's what I was asking about with regard to POTS.

Anyway, not the most important thing - just clarifying what I was asking.

Jeweliette

kangaroo wrote: »

(Didn't mean for this to be so long)

Thanks fel.

However, what websites advise is not the same as everyone having the same bad reaction to alcohol. Something may not be doing you good but you mightn't necessarily notice it that much.

I know lots of people with ME/CFS who have quite strong reactions to alcohol - they can feel quite poisoned the next day from a drink or two (or sometimes less) (I made a decision not to drink alcohol before I got ME so don't have personal experience although I have found a couple in tinctures quite strong/they don't agree with me so I think I may have alcohol intolerance). A Dutch study of 247 patients with CFS found only 1 had an unhealthy alcohol intake and a bigger than normal group abstained - authors suggested this was due to alcohol intolerance which was found before.

People with ME/CFS with alcohol intolerance includes at least one person with ME/CFS and POTS (research figures show lots of people with ME/CFS have POTS but most people in Ireland don't get tested for it).

So that is what I was trying to get at - does everyone reading this thread who has POTS feel bad after drinking alcohol and if so, is this from drinking relatively small amounts of alcohol (e.g. a few units or even one unit or less) or more from larger amounts.

I see for example that the POTS page on Wikipedia recommends that everyone should exercise but I know people with ME and POTS who have not found such advice helpful - sometimes generalisations can be made about conditions but not everyone is the same. That's what I was asking about with regard to POTS.

Anyway, not the most important thing - just clarifying what I was asking.

I feel much worse after drinking alcohol. I was never much of a drinker but since I've got sick I've felt the negative effect of alcohol after only having a small amount of Baileys poured over icecream! I don't feel it the next day though, instead I feel it immediately after consuming it. I'll usually feel much more dizzy, light headed, sick, my vision will be affected and I'll have much more severe palpitations, particularly when I'm sitting up or try to stand. That'll usually last for quite awhile.It's not like feeling drunk incidently, it's really quite sickening.

I think thats the case for the majority of POTS patients but there are some who seem to be exceptions. In recent times researchers have made efforts to categorize POTS by cause and symptoms. It's quite complicated because the causes and associated conditions are varied. However it's been found that while some types of POTS seem to be the result of an abnormal vasodilation response others are caused by abnormally high levels of vasoconstriction . Some people who react well to alcohol believe that they are "vasoconstrictors" and that might make sense I suppose.

There's a short and not terribly enlightening thread on potsplace about it. Search " Alcohol Helping Symptoms?, ...uhm...okay...? ". No answers there but it might give you a broader sample of reaction to alcohol among POTS patients than you'll get here .

For interests sake in the youtube video I have linked to earlier in this thread it is said that research in the Centre for Hypotension in the New York School of Medicine has found that 80% of teenages diagnosed with CFS have POTS. There's also a very interesting piece where they compare most life altering reported symptoms amongst CFS patients and those among POTS patients. It turns out that the two lists are very similar and almost interchangable .

ppink

I am not sure that alcohol really affects me POTS wise. It i hard ot tell what is being affected when you have a few things going on!
Saying that I never drink in the middle of the day and may only have half a glass of wine and I am ready to pass out asleep. Tiredness is the biggest thing I feel with alcohol. V rarely i could drink one glass but never more than that, in other words with small meals and tiny amounts of alcohol I am a cheap night out:D

kangaroo

Anyone ever sit on the floor of public transport of public transport because of orthostatic intolerance? If so, you could consider writing a letter to the Irish Times which might stop the suggestion in its tracks and also highlight the issue of orthostatic problems:

From April 22 letters page:

Sitting on the floor of the train

A chara, – As a daily user of Irish Rail, I would plead for some sort of campaign to stop people sitting on the floors of rush-hour trains. Not only are these people using up a disproportionate amount of room (especially when they are using their laptops) but they are also presenting a significant safety hazard. – Is mise,

ALEX STAVELEY

Guidelines for Irish Times letters are at:
http://www.irishtimes.com/about/p_letters.htm

As far as I know, seat sticks were banned on trains - I know quite a lot of people with ME/CFS who use them in their lives because of orthostatic intolerance.

skoolboi

fel wrote: »

Has anyone any information on postural orthostatic tachycardia syndrome? Is there any good consultant who treats this condition in Ireland or who actually understands the condition? Many thanks for your help.

hi there I'm from waterford. I have pots and neurocardiogenic. Have you been tested for EHLERS DANLOS that would be a good idea. The best place to go really is st. marys hospital london. The consultant is great. I also go to Cork to see a neurologist he worked with PROF MATHIAS in London. I go there again in a few weeks. monica

Jeweliette

skoolboi wrote: »

hi there I'm from waterford. I have pots and neurocardiogenic. Have you been tested for EHLERS DANLOS that would be a good idea. The best place to go really is st. marys hospital london. The consultant is great. I also go to Cork to see a neurologist he worked with PROF MATHIAS in London. I go there again in a few weeks. monica

Hey Monica

Great to hear of someone having a good experience somewhere.

Do you mind if I ask if your treatment so far has helped you?
What kind of treatments do you use?
Is Prof Mathias your consultant in the UK?

kangaroo

Jeweliette wrote: »

skoolboi wrote:

hi there I'm from waterford. I have pots and neurocardiogenic. Have you been tested for EHLERS DANLOS that would be a good idea. The best place to go really is st. marys hospital london. The consultant is great. I also go to Cork to see a neurologist he worked with PROF MATHIAS in London. I go there again in a few weeks. monica

Hey Monica

Great to hear of someone having a good experience somewhere.

Do you mind if I ask if your treatment so far has helped you?
What kind of treatments do you use?
Is Prof Mathias your consultant in the UK?

I'm also interested in the name (PM me if you prefer).
I've a friend in the UK who raves about Prof. Mathias, that he's the man.

She has private insurance and saw him for £800 (?). She got detailed testing:

- prolonged tilt test with blood tests and autonomic tests (squeezing, blowing etc)
- fasted tilt test then liquid meal and repeat tilt test
- orthostatic obs then exercise bicycle whilst lying on your back then repeat orthostatic obs
- 24 hour BP monitor
- Regular lying/sitting/standing observations
- Electromyelography (EMG) on legs looking for small fiber neuropathy

I imagine people generally wouldn't get all these here on average but just thought people might be interested. But it's useful if somebody has worked with somebody very good.

kangaroo

A corollary from this might be that getting a person with POTS to exercise may not make them no longer have POTS.

Exercise Performance in Adolescents with Autonomic Dysfunction.

Journal: J Pediatr. 2010 Aug 31. [Epub ahead of print]

Burkhardt BE, Fischer PR, Brands CK, Porter CB, Weaver AL, Yim PJ, Pianosi PT.

Department of Pediatric Cardiology and Congenital Heart Disease, University Medical Center Freiburg, Freiburg, Germany.


Abstract

OBJECTIVE: To test the hypothesis that excessive postural tachycardia is associated with deconditioning rather than merely being an independent sign of autonomic dysfunction in patients with postural orthostatic tachycardia syndrome (POTS).

STUDY DESIGN: We retrospectively analyzed records from 202 adolescents who underwent both head up-tilt and maximal exercise testing. Patients were classified as POTS if they had >/=30 min(-1) rise in heart rate (HR) after tilt-table test; and deconditioned if peak O(2) uptake was <80% predicted.
Changes in HR during exercise and recovery were compared between groups.

RESULTS: Two-thirds of patients were deconditioned, irrespective of whether they fulfilled diagnostic criteria for POTS, but peak O(2) uptake among patients with POTS was similar to patients without POTS. HR was higher at rest and during exercise; whereas stroke volume was lower during exercise, and HR recovery was slower in patients with POTS compared with patients without POTS.

CONCLUSIONS: Most patients who presented with chronic symptoms of dizziness, fatigue, or pre-syncope, were deconditioned, but, because the proportion of deconditioned patients was similar in POTS vs non-POTS groups, we conclude that HR changes in POTS are not solely because of inactivity resulting in deconditioning.

PMID: 20813382 [PubMed - as supplied by publisher]

kangaroo

Got the study here http://www.dysautonomiaprison.com/articles/2010/08/excessive-heart/ .

There's a link to the full PDF from there, but here's a direct link http://jap.physiology.org/cgi/reprint/102/3/896 just in case.

Abstract:

Postural tachycardia syndrome (POTS) is characterized by excessive increases in heart rate (HR) without hypotension during orthostasis.

The relationship between the tachycardia and anxiety is uncertain. Therefore, we tested whether the HR response to orthostatic stress in POTS is primarily related to psychological factors.

POTS patients (n = 14) and healthy controls (n = 10) underwent graded venous pooling with lower body negative pressure (LBNP) to -40 mmHg while wearing deflated antishock trousers.

"Sham" venous pooling was performed by 1) trouser inflation to 5 mmHg during LBNP and 2) vacuum pump activation without LBNP. HR responses to mental stress were also measured in both groups, and a questionnaire was used to measure psychological parameters.

During LBNP, HR in POTS patients increased 39 ± 5 beats/min vs. 19 ± 3 beats/min in control subjects at -40 mmHg (P < 0.01).

LBNP with trouser inflation markedly blunted the HR responses in the patients (9 ± 2 beats/min) and controls (2 ± 1 beats/min), and there was no HR increase during vacuum application without LBNP in either group.

HR responses during mental stress were not different in the patients and controls (18 ± 2 vs. 19 ± 1 beats/min; P > 0.6).

Anxiety, somatic vigilance, and catastrophic cognitions were significantly higher in the patients (P < 0.05), but they were not related to the HR responses during LBNP or mental stress (P > 0.1).

These results suggest that the HR response to orthostatic stress in POTS patients is not caused by anxiety but that it is a physiological response that maintains arterial pressure during venous pooling.

Jeweliette

Thank you for those Kangaroo.:)

fergal76

Hi All,

For 4 years now i had been collapsing and haveing seizures, then in the last 2 years, i started having really bad chest pains before i had the seizure. every time i collapsed, i hit my head really bad but i was told i had epilsey. i thought this was wrong cause i suffer from irregular heart rate and blood pressure. last week i had the tilt test and was told i had pots but unconfirmed cause i did not pass out but my heartrate was 114. from what i can gather, they would not have said it was pots unless they had found something. been out of work for 3 months now due to this and could be waiting 2 - 3 months to get it confirmed. all the symtoms for cronic pots is what i have experienced. does it take a while to find the right meds for this. have heard some horror stories bout this but it has to be better than epilsey does'nt it. would appreciate any views on this as i really want to get back to work.

Thanks

Fergal

Danielle 123

skoolboi wrote: »

fel wrote: »

Has anyone any information on postural orthostatic tachycardia syndrome? Is there any good consultant who treats this condition in Ireland or who actually understands the condition? Many thanks for your help.

hi there I'm from waterford. I have pots and neurocardiogenic. Have you been tested for EHLERS DANLOS that would be a good idea. The best place to go really is st. marys hospital london. The consultant is great. I also go to Cork to see a neurologist he worked with PROF MATHIAS in London. I go there again in a few weeks. monica

Hi monica!
I am living in cork and have been recently dignosed with pots! im wondering could you tell me the name of the neurologist in Cork you see? How does he help you?

Danielle 123

Danielle 123 wrote: »

skoolboi wrote: »

fel wrote: »

Has anyone any information on postural orthostatic tachycardia syndrome? Is there any good consultant who treats this condition in Ireland or who actually understands the condition? Many thanks for your help.

hi there I'm from waterford. I have pots and neurocardiogenic. Have you been tested for EHLERS DANLOS that would be a good idea. The best place to go really is st. marys hospital london. The consultant is great. I also go to Cork to see a neurologist he worked with PROF MATHIAS in London. I go there again in a few weeks. monica

Hi monica!
I am living in cork and have been recently dignosed with pots! im wondering could you tell me the name of the neurologist in Cork you see? How does he help you? I wud really appreciate any information or advice u may have as im only getting my head around this and not sure whats the best way forward. thanks danielle

acat123

Hi Danielle
I am in Cork too.I see Dr Fennell in Bons secours(cardiologist),I have also seen dr Carey in Bantry ,for tilt table test and consultation.I met Dr Mcglover(cardioloist in Bons)who gave good insight and recomendations for treatment.I would recommend any of the above ,if you need to see someone.Dr McGlover has recently returned from canada where he dealt with pots patients,so good insight.
Good luck
Acat

Danielle 123

Thanks for your reply! Im under Dr glover he was the one that dignosed me with pots! He has me on procorlan which seems to be helping with my heart rate but im still sufering with tremors and bad GI probs! Do u mind me asking what treatment you are doing?
Danielle

Val8

Hi

Just came across this site. Was amazed cuz i to amin Cork under Dr Glover. I have had POTS for over 20yrs and just been diagnosed a few months ago. Been very ill the last 2. Just keen to chat to others, see what helps and let yey know there is some great groups on facebook. Though i was t only one!!

Danielle 123

Hey!

Im cant beleive that we are all in cork and under Dr glover i was not aware of how many people have it! I only got dignosed a few months ago aswell after a year of been in and out of hospital been told there was nothing wrong and it was in my head very frustrating! ive been out of work nearly a year now! what kind of symptoms are u having? are u on medication? its great to talk to someone else with it!

acat123

Hi Danielle and Val
Kinda of great to hear there are more of us in Cork!I have sent you two a private message.
Acat

filo87

I've just been diagnosed with POTS too after a few bad years healthwise where noone could figure out what was wrong with me. I'm also under Dr. Glover in Cork. Would love to hear from others with the condition!

Val8

Hi.

Great to hear from you!!! This is a long and difficult illness. Jow are you getting on with Dr Glover? What meds are you on? I have been through th e wars with this illness. Have been diannosed with ME Fibromyalgia Irritable bowel depression panic disorder. Was treated like a was a lunatic by doctors until eventually a psychiatrist actually listened to me and arranged tilt table test. Lasted bout 6 mins on the test and blacked out and BP plumetted. So i had my diagnosis. That felt amazing to be able to walk into my gp and say i have POTS, i told you how unwell i was but noone would believe the symptoms.

Whats your story??? Would love to hear from you and chat online. some great FB organisations as well that give great info, including Irish Dysautonomia....but i think it only has a couple of members!! ha,ha we're a rarity!

Val

Danielle 123

Hey!
I left you a private message! look forward to hearing from you!

janetclaudia

Hi Danielle, I need advice about my daughter who is in hospital with acute pots after a minor surgery, I'm not sure if doctors really know about pots , she was diagnosed in February but it is after escalating desperately. What medication have you found to help if you don't mind sharing