Help4Me Posted December 10, 2018 Report Share Posted December 10, 2018 Hi Everyone I have my appointment tomorrow with my cardiologist....I need to ask him for a letter to give the ER so when I have to go there hopefully they will stop abusing me.....they do not give me fluids and they accuse me of faking my illness and they do tests on me that are useless such as DRUG screening..when I have NEVER used drugs.....anyway I would also like to know if anyone here has HYPER POTS.....do you have EPISODES of very high blood pressure and pulse.....or is it all the time....mine comes in episodes and I never know when one of these attacks will happen.....thanks Quote Link to comment Share on other sites More sharing options...
jklass44 Posted December 10, 2018 Report Share Posted December 10, 2018 Hi @Help4Me - I'm sorry to hear about your troubles. I also have hyperPOTS and am treated the exact same way at hospitals even with the diagnosis; The nurses and doctors hound me with questions about what causes my anxiety and if I do drugs, etc - I do NOT have anxiety and I most certainly do NOT do drugs. That doesn't stop them from doing drug screening tests though. I understand how frustrating it is, I really do. I've only been lucky enough to get IV fluids twice during my many past hospital visits - even if I request them and make a case for how it will make me feel so much better, it's rare to find a doctor that will give them, probably because their effects on patients with dysautonomia are not well documented. For the most part, my hypertension is stable on Clonidine and my heart rate is decent on Ivabradine. I do still experience flares and times when symptoms are bad, but overall I am much more controlled thanks to those meds and a great team of doctors. It's good that your cardiologist is giving you a letter to carry with you - hopefully this will help. Are you taking anything for your high blood pressure? If it's consistently high and causing you to have episodes it may be wise to ask your cardio about changing the dosage or perhaps trying a different one. Best wishes. Quote Link to comment Share on other sites More sharing options...
Lily Posted December 10, 2018 Report Share Posted December 10, 2018 Please understand that people doing drugs and trying not to be found out may sound exactly like people who aren't doing drugs. Correct and non-fatal treatment may depend on knowing exactly what is in your system. But still, they should not act like jerks. As to the tachycardia, yes. Mine is episodic, and not all that high )as far as I am aware). Nothing abouve 150 bpm unless I am exercising. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted December 10, 2018 Report Share Posted December 10, 2018 57 minutes ago, Lily said: Please understand that people doing drugs and trying not to be found out may sound exactly like people who aren't doing drugs. Correct and non-fatal treatment may depend on knowing exactly what is in your system. But still, they should not act like jerks. It's understandable that they have to rule out the use of substances - many of our symptoms mimic those who abuse. That does not give nurses or physicians the right to treat us as if we ARE those people. I work in the medical field, so I know how hard it is to bite your tongue and not be so judgmental, especially when you don't have all the facts. It just so happens that some people are better at that than others. And you're right, they should not act like jerks - being in the hospital can be a terrifying experience as it is! Quote Link to comment Share on other sites More sharing options...
Help4Me Posted December 10, 2018 Author Report Share Posted December 10, 2018 JKLASS.....I do not have high blood pressure at all when sitting down and it goes even lower when i stand up.....or lay down....the only time I have HIGH blood pressure is when I have these random hyper andregenic attacks...I don't know what else to call them....for awhile I was thinking and still might be that it is related to Mast Cell disorder...because it seems I have these attacks when I have eaten something that I react to....or if I eat too much.....I have had a lot of intestinal surgery so maybe my blood vessels can't handle it when I eat too much etc....or vagus nerve issue ??? who knows...I only know I have no control over how often these hyper pots like attacks happen...it is not every day....but when it does happen it lasts for up to 2 full days before my body goes back to stable....which I still have regular POTS ...like when I stand up on a normal day my heart rate shoots up and my BP drops low...and if I stand for more than 10 minutes I start shaking and will soon pass out.....that is a normal day....but the attack days my BP goes up to 220/110 or more......and my heart rate goes way high ...etc.....and shaking is non stop until the attack ends which could be 6 hours to 48 hours.....I have had about 20 of these attacks since June 2018..... Quote Link to comment Share on other sites More sharing options...
Lily Posted December 10, 2018 Report Share Posted December 10, 2018 Quote it seems I have these attacks when I have eaten something that I react to. This sounds like it could be mast cell activation disorder. You might try eliminating foods that contain histamine and foods that can cause the release of histamine by the body. Give it a month and start adding them back in slowly. Keep a symptom diary, too. You might discover an important key to keeping symptoms down. At the very least you'll have an interesting time trying new foods and running an experiment on yourself. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted December 11, 2018 Report Share Posted December 11, 2018 1 hour ago, Lily said: This sounds like it could be mast cell activation disorder. You might try eliminating foods that contain histamine and foods that can cause the release of histamine by the body. Give it a month and start adding them back in slowly. Keep a symptom diary, too. You might discover an important key to keeping symptoms down. At the very least you'll have an interesting time trying new foods and running an experiment on yourself. Quick question about MCAS: can a single food you have eaten mess with you for 2 weeks after you have eaten it? Quote Link to comment Share on other sites More sharing options...
Lily Posted December 12, 2018 Report Share Posted December 12, 2018 On 12/10/2018 at 7:45 PM, StayAtHomeMom said: Quick question about MCAS: can a single food you have eaten mess with you for 2 weeks after you have eaten it? I have no idea. Perhaps someone else here who has it can answer this question. Quote Link to comment Share on other sites More sharing options...
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