Keep having blackouts

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Ive had about 15 blackouts now in past few months, lots of tests. Does anyone know if it's a "normal" reaction for heart rate to increase (from 96 to 150) after the GTN spray on the Tilt Table Test? My blood pressure remained the same but I could feel my heart getting faster and I became all hot and sweaty although I did not blackout. Dr says I have postural hypotension and reflex syncope and have to self manage it. It's generally the pounding heart that comes on when I'm standing still that precedes a blackout, if I can sit or move about it recedes but sometimes just happens too quick. Is that part of the symptoms of Relex syncope and can it have any long term effects on the heart? Im constantly tired and with or without blacking out the symptoms leading up to it just drain me.

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  • Posted

    Your symptoms correspond with Postural Orthostatic Tachycardia Syndrome, and you should find another doctor because you absolutely do not have to settle for "self-managing" this condition.  There are medications, which are necessary for many patients to regain normal functioning and avoid near-syncopal episodes. The medications are called fludrocortisone (Florinef) and midodrine. Generally, a doctor will start you out on 0.1mg of Florinef 2-3 times daily.  If this does not help your to significantly resolve your orthostatic intolerance, then they may add midodrine which is a vasoconstrictor.  Both medications have very few side effects for most patients, some are kind of annoying (like goosebumps with midodrine) but they are an small price to pay in order to be able to stand up without blacking out!  It is disgraceful that so many physicians lack the knowledge to properly treat this condition, because it is so debilitating for people who are experiencing it.  When I first started having symptoms of POTS, I was told by multiple physicians that I should just go on with my daily life as an essentially bed-ridden individual and it would "most-likely" resolve within a year.  One year passed and it did not resolve, even with Florinef.  It was only with the addition of midodrine that I eventually got some relief from the condition.  I cannot imagine what my life would have been like had I not sought after a physician that knew what POTS was and how to treat it, so when I read your post I felt a strong need to tell you there is relief for your condition.  You will probably have to be proactive and demand it, but your quality of life is worth it and you should not let a physician tell you otherwise.  
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    • Posted

      Thanks Vanessa, I see my new GP today so will bring this up although unfortunately she will be stuck going through the same antiquated referral system with have in Fife.  So far the cardiologists have been reluctant to see me and my previous GP would not act on her own.  I will certainly raise the subject!

       

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    • Posted

      I know how that is... it's a super frustrating process, but eventually you will get the treatment you need because you have a good idea of what this condition is and how it's supposed to be treated now, so you can properly advocate for yourself.  If cardiology won't see you and treat you, you should request an endocrinologist appointment, they typically have more experience dealing with this kind of issue.  Cardiologists focus on the heart and vascular system specifically, rather than the hormones and structures that are not properly responding to hormonal stimulation in response to a drop in blood pressure. This is where most primary care physicians go totally wrong... they see an increase in heart rate and immediately refer to a heart doctor without thinking about the cause of that increase in heart rate as being hormonally related, and the most important factor for consideration.  Good luck with everything, hope you find some relief soon!smile  
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    • Posted

      Thanks Vanessa. I'm not sure about the POTs thing as from what I've read there has to be an increase of 30 on heart rate within 10 mins of standing. When I feel my heart pounding it tends to be when I'm standing still after I've been up and about eg queuing, waiting to cross road etc. On the tilt table it didn't increase until after 15 mins after the spray was given. Can it still be POTs? 
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    • Posted

      Vanessa - good (and bad) news!  I saw my new GP yesterday and she was happy to agree that I had POTs.  How refreshing when my previous GP just thought that the internet 'put ideas in peoples heads'.  However, she wants me to consider self management before we talk about medication.  I told her I used this site and she had actually heard about it and was very positive.  You don't know how rare that is in this little 'hick' town.

      She was willing to discuss medication but was not yet sure about what options were available.  I couldn't remember tthe names on the PoTs websites to the right but I'm entirely content that she is at least open minded.  I feel if I go back, and I have not improved, she will have done homework and so will I.  She knows this, as I told her my background involved peer review panels in Public Health research.  I am quite capable of differentiating between good and bad research. 

      Feeling much better and hopeful about the future!

       

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    • Posted

      That's great Christine!smile So happy to hear that you are on your way to relief from this condition.  Like i said before, you will probably have to push your doctor to research appropriate treatment or refer you to someone who knows how to begin treating this condition, but you're absolutely on the right track and I'm so glad to hear of this! I'm a little bit surprised that she is so hesitant to start you on a low dose of fludrocortisone to see if it can help because the risks are so minimal compared to the potential benefits, but I do remember going through a similar process when I was first diagnosed with POTS.  The main medications used to treat POTS are fludrocortisone and midodrine, so definitely do your research and bring in scientific journals (you can look them up on google/google scholar by typing in the medication names along with "POTS", and physicians seem to accept information from scholarly articles more readily than websites that have been created for patient knowledge alone). Unfortuantely POTS does not go generally go away on it's own without a significant amount of time passing, usually in excess of 1 year from the onset of symptoms, but that is a widespread misconception among physicians to believe that it will just resolve itself.   You are going to be your own best advocate in this case, and all you can do is keep fighting for your right to adequate treatment for this invisible yet significantly detrimental condition.  It's challenging and frustrating but you will get through this and you are on the right track!  Best wishes, and please feel free to send me a message if you need any advice in the meantimesmile -Vanessa 
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    • Posted

      I won't (can't!) let it drag on.  I have had a dianosis of ME/CFS for decades and I note that many of the symptoms given for POTS on this web-site are very similar.  I won't wait too patiently - I can't afford to. If there is any chance that the meds can help then I will push for them. I've spent years managing the symptoms and  I told my GP that this was the website and forum I used and she was relatively positive.  I'll have to leave it now until after the holidays but after that's all over I'll arrange to see her again.
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