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Help needed re: meds from anyone based here?

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Hi everyone, is there many uk members here for specific advice? 

Sadly, a relative has suspected H PoTS - every symptom of it - so terrible - things are dire!

BP is high, especially dia, and that's not been lifelong - it used to be low. 

Hypovolemia likely too. Even accessing a diagnosis will likely take a very long time! Things are dire.  

Tilt may be possible after massive wait, but very unlikely Tilt with blood draw will be available to confirm subtype. 

A top cardio here says  subtype isn't important - surely that's not right, esp if H POTS with high BP?! 

Anyone been able to try methyldopa, clonidine (patches or tablets) or desmopressin here? What have your experiences of accessing them been like? Cardio above unfortunately doesn't sound to use any of them!

Don't suppose pyridostigmine is ever accessed over here?

Any thoughts, ideas, suggestions?  

Will do more threads on other issues...

Thanks so very much in advance and best wishes to you all. 


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5 hours ago, Looking_for_light said:

Heard one leading cardio say subtype isn't important - surely that's not the case?! 

Bottom line it might H-Pots vs neurogenic OH like me. Saying that meds used to treat symptoms (and is just that) and are similar. My faint care team does not get overly focused on subtype but rather finding what works med wise (or symptom wise) for me. Being neurogenic would suggest some other pathology i.e MSA or Parkinson's but my care providers are trained to pick up on that. I have neither. They are also not big on doing autonomic testing as at the end of the day treatments still will not change 

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Many thanks for the thoughts. 


Clon does sound bit scary and will inevitably be very hard to access over here anyway, but may be one of only options! 


Anyone with H POTS tried the patches? Very gradual titration by cutting tiny strips? 


Many symptoms of mcas, so unfortunately very wary of BB in this instance. Going to be very challenging! 


Plus, they affect metabolism and in someone unable to exercise due to symptoms & conditions, that would be v concerning. 


Sadly, going abroad isn't possible for various reasons inc no resources. 


Thanks again. 

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  • Looking_for_light changed the title to Help needed re: meds from anyone based here?

@Looking_for_light I have HPOTS and am relative stable on my current treatment. My BP used to run high along with high HR. Now my BP and HR are stable with Carvelidol ( beta blocker ) and Diltiazem ( calcium channel blocker ). In HPOTS we suffer from excessive vasoconstriction, so the Diltiazem is very important. Out of all the Beta blockers I tried only Carvelidol is effective. Sadly the meds are not the only treatment - I get IVs twice a week. I know these are not yet accepted ad POTS treatment but maybe one day the will be ? 

It is very important to stay active despite the scary symptoms, but she will have to learn to pace herself. Doing too much will trigger adrenaline to be dumped and doing too little will make the orthostatic intolerance worse. Frequent rest periods are key - I do something upright for ten minutes ( or until I feel symptoms ) and then rest until I can get up again. That is the only way to avoid triggered symptoms. And fluid, lots of fluids. 

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Know everyone's different, but what are all the adverse effects that people had from Clonidine? (C)

Could a slim slither of C patch be combined with the smallest dose of Diltiazem (D) as a start for H P & SVT (possibly also Afib)? 

Anyone with Hyper P tried methyldopa (M)?

Could smallest dose of M be combined with the smallest of D or would they both act too similarly?  

Probably won't be access to any of it anyway, so all hypothetical scenarios! 


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2 hours ago, Looking_for_light said:


@MikeOWould a neurogenic aspect explain terrible bladder symptoms or would it more likely lead to inability to urinate?





Well my take is that neurogenic orthostatic hypotension is just that a symptom all by it's self. I could see the underlying disorder that affects someone with nOH to be the stressor that would make some bladder issues surface. PAF,MSA, PD. 

Hope this helps

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Clon not even available in patches here!! Due to that, and that it will be extremely hard to access, guess will have to be v last resort. 

Someone here has a great H P blog and was taking Clon, but can't recall Dinet handle! Anyone know? They mentioned antioxidants in a post - wonder which ones are used up too quick in dysautonomia?! 


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