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COVID-19 and Treatment Access

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#1 Wed, 01/04/2020 - 22:46
Lu Lu
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COVID-19 and Treatment Access

My scheduled nerve block with neurologist  has been cancelled due to COVID-19 and GP won't prescribe me an oxygen tank due to the current demand from the coronavirus crisis. Has anyone else experienced their treatment being withdrawn due to coronavirus? 

I am now left with steroids that are largely ineffective and immigran injections that do work after 20 minutes but are not enough to cover the six attacks I'm having each day( even with splitting them). 
 

Any help or advice on how I could ask for my nerve block or access it?! Or any other things people are trying in light of restrictions on medical care due to COVID-19? 
 

These are unprecedented (and very painful) times...

 

 

Lucy *bye*

Thu, 02/04/2020 - 01:04
ithomas2011
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Joined: 08/05/2019 - 13:06

Sorry if this has been asked already, and it may be a silly question, but, are you unable to request Verapamil? For me, it is the only preventative that works.

I hope someone helps.

Thu, 02/04/2020 - 08:21
Lu Lu
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Hello thank you for your reply! Unfortunately, I can't take verapamil as it effects my heart.

Lucy *bye*

Thu, 02/04/2020 - 20:42
Becky
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Hi Lucy,

I am currently trying to not freak out as my MONB has also been cancelled. 
you say verapamil affected your heart and I had the exact same problem with it.

Obviously I'm not a medically trained person but I am on Lamotrigine as no other drugs helped without horrendous side effects.

I am so sorry this is happening to you. Are you under a neuro? You could try emailing them for advice?

I'm sorry I don't have anything more to offer,

becky 

Thu, 02/04/2020 - 21:31
Mali
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Joined: 15/09/2019 - 17:36

Can you request a gammacore through your specialist or neurologist? 

Mali 

Fri, 03/04/2020 - 14:37
Lu Lu
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Hi guys, thanks for the advice and support.  I have managed to convince my gp to prescribe oxygen tank after getting advice from OUCHUK that they should still prescribe it in the COVID-19 crisis.  So fingers crossed for that and if I don't get it pushing for Gammacore might be a good idea. I don't know how I will go about that without being able to speak to my neurologist...

I'm a little frightened my Lamotrigine and long term side effects...

Also, going to try Frovatriptan tablets for night time to see if this helps me get a nights rest. Has anyone tried this? 

Thank you! 

Lucy *bye*

Sun, 05/04/2020 - 12:46
Val
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Last seen: 3 days 5 hours ago
Joined: 21/03/2012 - 15:16

In case others who are struggling to get oxygen at the moment read this, please be aware that the oxygen companies have assured us that there are sufficient supplies for home oxygen users, PROVIDED that when a new HOOF form is submitted, only one cylinder will be supplied and when re-ordering you can only order one replacement.  Do not over order as this will cause a shortage and may lead to panic-ordering, a situation we do not want and neither do the oxygen companies.  Please call the advice line if you are still having problems getting oxygen. 

Val. 

 

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