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This is all so new and frightening-bipolar and CH ?Lithium

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#1 Thu, 12/02/2015 - 22:16
docclairebear
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Last seen: 6 years 9 months ago
Joined: 10/02/2015 - 18:02

This is all so new and frightening-bipolar and CH ?Lithium

I have recently been diagnosed with CH.Was admitted and had CT /LP etc and this was the eventual outcome.My GP has been awesome and I now have oxygen at home which seems to keep the pain to a level 7.I am seeing a neurologist next week.I also suffer with bipolar and was wondering if anyone had any experience with Lithium to treat both conditions at the same time?

I am now pretty much housebound as I need to be near my oxygen.I am too scared to be far from it or even to drive at the moment.I do get a warning of about 5 mins of watering eye and itchy nose but this still feels like I don't have time to be away from the cylinder.

My main concern at the moment is my mood.I am trying to remain positive but can feel my mood slipping down hour by hour.My husband is being amazingly supportive as are my 2 young girls but I really don't feel I can put them through anymore.They have watched me fight bipolar for years and now this is another whole new battle.

My mood has finally been well controlled on meds and our life has been wonderful for a whole year.I miss that life so much already and cannot see a way through this.I don't know how some of you have coped so long.

I hope you don't mind me asking but I am so frightened that I am losing control of everything again.

 

Please help with words of advice and wisdom if you feel you can.xxx

 

 

 

Thu, 12/02/2015 - 23:13
Brian C
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Last seen: 2 years 6 months ago
Joined: 26/02/2014 - 14:35

Hi, my name is Brian, and I have been where you are lets say more then once, I am classified Medicaly & Surgicaly Cronic Cluster Headache Suffer, I have also been told I have Haylo Migraine, and SUYCT Headaches, I CAN'T SAY THIS ENOUGH PHONE THE HELP LINE YOU WILL HAVE SOMEONE WHO HAS BEEN THERE AND DONE THAT, I HAVE BEEN DIAGNOSED ALSO WITH PTSD, AND SEVERE DEPRESSION (NOT JUST HAVING A BAD WEEK TYPE)

YOU HAVE MADE THE 1st Step follow through, and the best of LUCK

P.S.

 

EXCUSE THE SPELLING AS I HAVE A SEVERE TREMOUR

Fri, 13/02/2015 - 07:28
Dorothy Trustee
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Last seen: 22 hours 45 min ago
Joined: 19/02/2014 - 10:16

Please do as Brian advised and ring the helpline. They are sufferers and supporters and totally understand what you are going through. Leave your number and they'll ring you back . This is a free service 01646 651 979 you have CH family to help you here. Please let us know how you are getting on. All the best.

Dorothy

Dorothy (Trustee)

Fri, 13/02/2015 - 12:58
docclairebear
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Last seen: 6 years 9 months ago
Joined: 10/02/2015 - 18:02

Thank you both.I will try them when I feel a bit stronger and less likely to just incoherently blubber down the phone.xxx

 

Fri, 13/02/2015 - 22:30
ElizabethK
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Last seen: 1 week 3 days ago
Joined: 26/02/2014 - 14:26

Hi,

So sorry to hear what you are going through. My husband has Bipolar, so I know some of what you have been through. I do not have any experience with Lithium myself for my headaches, but do know of some that it has helped. I also know of some that Lithium has been a life saver for in Bipolar. 

You are right that it is so important that your mood is stabilised first and then you need to see a Neurologist who is a Headache Specilaist to get some control of your CH. So pleased you have oxygen, once you see a Neuro they can prescribe portable cylinders to allow you to go out.  If you phone the Helpline you will have to leave a message and someone will get back to you with some great advice, all our Helpliners are sufferers or supporters of sufferers so have great understanding of what you go through. Do you know which type of Bipolar you have 1 or 2?

Please do not worry about being tearful on the Helpline it is there for your support and your husband, please make that call 01646 651979 you will not regret it!

Take care

Liz

Sat, 14/02/2015 - 12:22 (Reply to #5)
docclairebear
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Last seen: 6 years 9 months ago
Joined: 10/02/2015 - 18:02

Thank you Liz.

I didn't know that the neurologist would be able to prescribe portable oxygen-that would be fantastic as I feel like a prisoner in my own home at the moment with no idea of my release date!

I received my literature from OUCH this morning.I think the card to carry with you is a great idea.One of my worries (apart from being seen by others during an attack) was that someone would call an ambulance.I do not want to go anywhere near a hospital if I can manage it as there is nothing they can do.Last time they just pumped me full of morphine which obviously did nothing.

I am feeling a lot more hopeful today.I went out in the car alone last night. parked up in an isolated place and screamed and hollered for about 30 minutes about it all.I exhausted myself,came home and had a good sleep.

I have suffered with bipolar for many years and have been well controlled on citalopram,lamotrigine and depakote. Changing to lithium would be a risk for my bipolar as I would have to wean off those and then start the Lithium I would think.

I guess all hinges on appt with neurologist on Thursday . Hope he knows his onions!

Thank you again

Claire xx

Sat, 14/02/2015 - 23:59
Phil
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Last seen: 2 months 2 weeks ago
Joined: 26/02/2014 - 17:02

Parking in an isolated area and shouting is a great idea.
We must have a group session sometime instead of the usual meetings.

Incoherent blubber is fine; I never make much sense,
their fine with me. Ring them.
When you don't feel strong enough is when you need the help most.

Sun, 15/02/2015 - 08:23
ElizabethK
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Last seen: 1 week 3 days ago
Joined: 26/02/2014 - 14:26

Hi Claire,

I am not Doc but I think the only med that would need changing for you would be Lamotrigine as it is your mood stabiliser and Lithium is the same. Before you see the Neuro have a chat with your Care Co-Ordinator about any possible change here and their opinion (hopefully the would have a quick word with your Psyche too).

Lamotrigine is used in headache too, your Neuro just might add something else in here.

I would have thought the most important thing here would be to keep your Bipolar stable first and then treat the CH - just my personal opinion! Can I ask who your Neuro is?

Think it is a great idea as Phil said to find a place to go and scream - now why didn't I think of that!! Lol!

take care

Liz

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