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Lavender90

Hyper pots what do u take for it?

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I have hyper pots type symptoms & orthostatic BP rise but normal blood level of catecholamines. 

The only thing I have found helpful myself is low dose diazepam. Licorice root helped me greatly for a year but the benefits wore off and I developed high BP on it. 

What have you tried already? Hyper types tend to respond best to beta blockers or clonidine & other sympatholytics, but they just made me faint more. 

B xxx

 

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I take Clonidine to lower my BP and Ivabradine to lower my HR. My doctors have had to increase the dosages of both multiple times though, so I’m not sure how much it’s actually working. The Clonidine does make me very sleepy, but I don’t faint more by being on it. 

Are you on medications currently? What has your doctor suggested?

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Diltiazem ( calcium channel blocker - to helps dilating the blood vessels and therefore lowering BP ), Carvelidol ( beta blocker - to improve tachycardia ), Guanfacine ( lowering BP and helping with brain fog ), Ritalin ( to help with fatigue and brain fog ) and Escitalopram ( SSRI - to help regulate neuro transmitters ). In addition I take many GI meds and - most effective of all my meds - weekly IV fluids. They have drastically improved my symptoms to the extend that I was able to LOWER the dosage of some of my meds. 

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thank u all for replying . I first will say sorry for misspelling of the tablets ha. ibravadene  mestion midrodine beat blocker  I find in a&e my blood pressure and my heartrate settles on the saline I am fighting to get it on weekly trail but they all terrorifed of giving it !! how did u get yours weekly I been going a&e in amblance or waiting six hours in a&e it very scary stressful but it helps when my heartrate in 160 plus get it to 100bpm I really need something as my quality of life is just getting worse and worse  

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My heart rate was frequently getting between 140 and 200bpm off medication. I have bounced around many different beta blockers that all seem to do the job. I've responded well to beta blockers alone and high fluid intake. I started on a high dose of Metoprolol, but since I'm only 85lbs I had bad side effects on that due to lowering blood pressure and bradycardia. My cardiologist switched me to low dose Propranolol and I was doing well on that, but I have an AV block as well. I went to see an electrophysiologist for the AV block and he wanted me on ivabradine, but we couldn't get it through my insurance (darn American health care) so he switched me to Bystolic (nebivolol) because it's newer and cardioselective. I haven't had a severe attack since starting beta blockers.

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On 5/11/2019 at 3:36 PM, Lavender90 said:

I am fighting to get it on weekly trail but they all terrorifed of giving it !!

I have seen a private cardiologist and presented him with the current research on IV saline (Ruzieh, Moak, Jacob), plus the studies by Raj & co demonstrating the typical blood volume deficits in POTS. I explained that it is the treatment with the strongest supporting evidence of benefit and least risk of harm. Just think of all the issues caused by the other POTS meds given to us - high BP, low BP, bradycardia, arrhythmias, strokes, electrolyte imbalances (which can be fatal), raised intracranial pressure etc... What is the worst that can happen with a bag of saline - you pee it out & may get a bruise at the IV site. He has agreed for me to do a trial of 1 litre a week for 6 weeks. I will have to pay for a home care nurse to come and administer it to me. The actual saline cost £17 something for 6 bags from Lloyds, my husband is collecting it this afternoon. 

B xxx

 

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I take clonidine and florinef.  My elevated NE seems to be a response to low blood volume and blood pooling.

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