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#1 Thu, 07/01/2016 - 19:00
Last seen: 7 years 11 months ago
Joined: 17/04/2015 - 23:39


Happy new year to everyone.

I was just wondering if there were any other people on here who have had any effects with lithium for SUNCT and CCH?

My neurologist has 'exhausted his options' now (his words Beee ) and has referred me to see Dr Matharu in Queens square, though I'm not sure how long I'll have to wait for an appointment.

I had a bad reaction to zonisamide, went to the GP and was told to titrate down for 6 weeks, saw my neuro at hospital and was told to stop it immediately.  

I have been titrating down off of topiramate and only have one week until that is stopped.

I started on 200mg lithium for 2 weeks and went up to 400mg a few days ago. 

Pf wishes to all



Fri, 08/01/2016 - 08:39
John's picture
Last seen: 4 years 7 months ago
Joined: 07/04/2014 - 15:08

Hi Tony..Lithium is one of those drugs which may help some sufferers but others often find it difficult to use. Watch the Lithium side effects and make sure you have regular blood tests. Increase the dose carefully and don't just stop it's use.

Dr Matharu is a great guy. He and his team at Queens square are fantastic. Keep chasing the appointment and see if you can request an earlier appointment if you can't wait.

Take care




Fri, 08/01/2016 - 10:18
Last seen: 7 years 11 months ago
Joined: 26/02/2014 - 14:54

I tried lithium was not keen on it but it was a last resort too, did not help me had some side effects cant remember them all as i seem to get bad side effects from so many meds. But I do remember an ache across the lower back level with my belt, may be kidney related. GP took me off them asap when I mentioned this.

Sun, 04/09/2016 - 10:42 (Reply to #3)
Neil Phillips
Last seen: 2 months 1 week ago
Joined: 23/11/2015 - 22:17

Hi JOhn,

Why is Lithium difficult to use ? I'm interested because I thinking of going down that road now that I seem to be Chronic.

I've done Verap, steriods so I'm looking for a new solution.






Tue, 06/09/2016 - 10:49
Last seen: 6 hours 44 min ago
Joined: 21/03/2012 - 15:16

Hi Neil

Lithium dosage is not guided by a set regime.  When taking lithium you have to have regular weekly blood tests to determine your blood/lithium ratio and the dose is adjusted according to results.  You also have to carry a card in case of emergency so that if you are in an accident those treating you know you are on lithium - it skews blood results otherwise.    The other point is of course that the drug is really intended in the treatment of psychiatric conditions and the side effects can be heavy duty.  I know some neuros use a verapamil/lithium combination with chronic sufferers, but they would be able to tell you how this combination is achieved. 


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