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CBD oil blues

CBD oil has not been good to me.

CBD oil is quoted as helping EVERYTHING, from anxiety disorders, depression, epilepsy, to stroke and cancer. It’s natural, and supposedly has no side effects. It starts working within a few days to a week, and the results are amazing.

Only that hasn’t been the case for me at all.

I’ve tried A LOT of different CBD oils, various strains, strengths and from various companies. In the UK the strength of an oil is measured in %, I’ve had oils vary as much as 3-30%. The 30% was one of the least effective!!

First thing to be aware of, dosing instructions from the companies can’t be trusted!

Second thing, you can indeed have side effects from CBD oil. For me, this was migraine. I also know somebody else who experienced migraines when starting CBD oil. It also messed with my sleep depending on the dose; low dose and I slept too little, with a higher dose my sleep was deep and peaceful.

The most effective oil for me has been a full spectrum 4% CBD oil with traces of THC. The company recommended 3-12 drops a day, which did ABSOLUTELY NOTHING for me.

A friend told me most oils require a daily dose of around 30 drops, especially for seizure disorders. They are notoriously hard to treat. Sure enough we upped my dose to 18 drops a day, and saw a huge improvement.

It reduced my triggers (eg. cars going past with headlights on no longer caused seizures, in fact they barely made me feel spacey). It shortened the length of my seizures, and meant I bounced back / recovered from a seizure much faster. It also greatly reduced seizure rage, which was incredibly important to me, and I felt better in myself – more “me”!

However, after three days with less than a dozen seizures and feeling really good (for me 😉 ), I had to switch to a new CBD oil as mine had run out.

This one is an 8% CBD oil from the same company, but it’s an entirely different strain.

Because I had to switch, I fell right back down the epilepsy pit. Today has been fucking awful, I might as well have been taking nothing.

I’ve had a lot of LONG seizures, experienced a huge cluster, and was left feeling extremely physically unwell with a migraine. I haven’t noticed any triggers today, nothing that would usually cause seizures; no bright lights, missing sleep etc. It’s ridiculous.

We were going to start this oil at a low dose and gradually build it up, but fuck that I need relief!! Instead of a starting dose of 5 drops we’re doing 14, tomorrow will be 16 drops and the day after 18. We’ll see how I’m doing then.

3

How much louder can I ask for help??

Gog here.

For several months Anon’s overall anxiety levels have been high, but worse is that about 4-5 days a week, she has the highest level of panic I have ever seen.

A lot of times she can’t even talk. She is overflowing with anxiety, is absolutely panicked and doesn’t know why, and if the slightest thing goes wrong (eg. she can’t find something she wants) she bursts into tears. When you’re already trying to cope with so much, it only takes one thing to push you over the edge.

Today she was so overwhelmed with panic that she was curled on the footstool with her arms over her head, just trying to survive minute by minute. It is excruciating to watch.

Anon cried at me today that she needs help, but we can’t get it as she is too ill to make it to any appointments, and the NHS are unwilling to help us overcome that – they have said no to home visits, email contact and video calls.

We can’t live like this.

Today I phoned our GP surgery and asked for an urgent telephone appointment, where the Doctor would talk with me. I’m getting a call back in a few hours, which is weird as normally they try make us wait 5+ days.

I’m nervous about this phone call. Firstly because the last time I had a telephone appointment, the Doctor was absolutely disgusting as he couldn’t talk with Anon. And also because if something goes wrong with this call, it will break Anon.

My hope with this phone call is that we will have an understanding and sympathetic GP.

I will spell it out: Anon is too panicked, anxious and scared to physically get to an appointment. This is our problem!!

Not only is she terrified of appointments after abhorrent treatment, but her terror is so bad she can rarely leave the house now, and certainly can’t cope with busy places (this is why dog walks are usually safe: Anon is with a dog (which almost always helps her), she’s in the countryside, there’s lots of open space and very few people).

Obviously we can’t get treatment until Anon’s panic has been reduced. I would like Anon to start on an anti-anxiety drug (such as an SSRI or Tricyclic antidepressant) to see if we can reduce her anxiety, and see how she is then. It’s my hope that we can then get further help and attend appointments.

Not too hard to understand, I hope.

I imagine they will bring up the point that Anon has been diagnosed with bipolar, and so a anti-depressant could trigger mania in her.

My response will be: At this point mania would be far easier to manage than this constant fear and psychosis. With mania Anon gains confidence and motivation, and in general low-down appointments are a breeze.

Secondly only one antidepressant has ever made Anon manic, and it wasn’t an SSRI.

Also we are not sure how much the diagnosis of bipolar really suits Anon anymore. She no longer has clear or long-lasting mood episodes (rather it seems she’s just constantly fucked mood-wise…) and she has constant psychosis. Not exactly bipolar.

Finally, if you’re not willing to prescribe something to help her panic…what do you suggest then?! Because all I’ve been advised so far is “just bring her to the appointment”, and that really isn’t happening.

The other thing I’m concerned about is that he won’t be willing to prescribe anything without seeing Anon at an appointment. I’d basically be replying that if he wants to see her he will have to do a home visit, and he’ll have to do it soon because we can’t cope.

**edit**

Whilst reading about anti-anxiety medication I ended up discovering ‘panic disorder’, which was something neither of us had heard of before.

I’d always thought panic attacks were short in duration and usually involved hysterical crying / hyperventilation, but according to the NHS site with panic attacks…

“You may experience an overwhelming sense of fear, apprehension and anxiety. As well as these feelings, you may also have physical symptoms such as:

  • nausea
  • sweating
  • trembling
  • a sensation that your heart is beating irregularly”

Hmm, that’s a lot of Anon right there…

I hope this phone call goes well, and I’m almost 100% certain it won’t 😦

2

Stuck stuck stuck

Gog phoned up Mind and Bipolar UK today, to ask for absolutely any ideas on how we can move forward in getting help…neither had any suggestions.

Mind was the most helpful surprisingly (in fact Bipolar UK kinda sucked, which shocked us because they’re normally *really* helpful). Mind told us to ring a different local branch of social services, and said they can send out one of their trained volunteers to offer support, as a kind of in-between step, a kind of practice appt.

I’ve had Valium a few times today, whenever my panic’s been suffocating. I can feel the fear bubbling beneath, but it’s not overwhelming when I’ve had a Valium, and I can let my mind rest and concentrate on other things. I’ve been colouring again.

I’ve had some wildly low moments today. I’ve had some incredibly angry and frustrated moments, and I’ve felt lonely and hopeless all day.

I feel stuck, and like my Bipolar has bested me once and for all. I’m ready to give up. Really, I just want all this fear and pain to stop.

I don’t know where we go from here, because I can’t get help, I can’t go to appts…I have a panic attack whenever I talk about them with my partner.

I fucking hate Bipolar.

1

Panic and Valium

The past few days I’ve been taking Valium as needed.

I have Valium left over from when I was really psychotic, and all the crap GP we saw wanted to do was dope me out of my eyeballs…the first few days I took the dose he prescribed, and I was so zombied out I couldn’t move or talk.

We lowered the dose ourselves, so we have a lot left over.

I’ve been feeling so terrified these past few days that I’ve been taking 2.5mg of Valium whenever I need to, and it’s been immensely helpful. It winds the panic down to anxiety, which I can cope with.

This morning I’m so scared, for no apparent reason. I’m trembling, I feel sick, my heart is racing, and my palms are sweating. I feel on the verge of a panic attack.

I think what’s triggered this immense terror is that we’ve said we’re going to call the charity Bipolar UK today, and even though that shouldn’t be scary at all…apparently it is.

My mood is still extremely low. My psychosis has been worse than usual for a week or so now, so I guess the increase in anxiety could be linked to that too. I feel drained and scrambled.

I just raged at my partner because he talked about him ‘trying to keep me safe’, and I asked him if he realised how fucking cruel he was being. Yes, he’s trying to keep me physically safe, but he’s not lifting a fucking finger to try and help me mentally.

It’s TORTURE being unable to end this misery. I told him he’s like a zoo ‘rescuing’ an endangered animal, then letting it live for years in a tiny concrete enclosure. Sure it’s physically safe, but mentally it would have been better off dead.

It’s all well and good keeping me safe, but I also need help to fix my mental state. I CAN’T LIVE LIKE THIS.

Time to take half a Valium…

1

Mood mapping / chart for Bipolar

Anon writing this 🙂

I’m still fairly manic, but since we started taking a fairly small dose of Abilify, I feel much better…I can think, I can concentrate on most things, and although I get distracted fairly easily it’s not hideously bad.

Plus I’m not bouncing off the walls and talking so fast Gog has to remind me to breathe 😉

We still haven’t heard anything from the NHS ( = good for me, I don’t want to see a psych!), which means I’m taking the Abilify without a medical professional knowing…but they haven’t offered us any help, and I took Abilify for a long time. I *know* it helps with psychosis and mania, it’s just the depression & shitty side effects that meant I couldn’t stay on it.

Anyway, I have been looking for places where I can chart my mood / symptoms. Preferably this would be online, as I barely use a mobile phone. I found a few, but none that really clicked with me.

The closes I got was one through the DBSA, but I still found it hard to use, confusing, and it wasn’t exactly what I wanted.

This is where Gog came in!

I am not good with technology; Gog is. He created a *brain blank* nooooo! My brain has lost what it was saying – agh! This is one of my most annoying symptoms…shit. I’ll just show you the photos. Maybe the word will come.

Click to enlarge the photos 🙂

So it has the date (you can easily add a few entries for the same day, too) and then you mark each column out of ten, or whatever number you choose.

The first is marking your mood (for me 1 = suicidal, 10 = manic & psychotic). Next you rate:
Calm and relaxed
Sleep
Hopelessness
Anxiety
Sadness
Suicidal
Irritability
Impulsivity
Racing thoughts
Concentration (ability to concentrate)
And there’s an extra bit to add notes to.

I love this! It is so much better than any I have found online and Gog says he can easily turn it into a graph too, so you can see the ebb and flows. I’ve only been using it two days so far, but I’ll try keep up with it 🙂

Also, he says he thinks he could make it so that other people could download (?) the layout and use it themselves.

Or feel free to create something similar, and choose your own score system, headlines and colours!

**edited to add** Spreadsheet! That’s the word I lost!

0

Well , it’s mania

Yesterday’s post was titled ‘Please tell me this isn’t mania…’ – I think you know where this is going.

Gog here!

Anon’s mania has been magnificently worse than yesterday. In 12 hours the difference in intensity was astounding.

We’ve only been noticing this mania brewing for four days at most, including today, and the initial signals were very easy to miss…Anon’s mood wasn’t in the pits and she wasn’t trembling with anxiety – hey that must mean she’s going manic!

God Bipolar sucks.

Yesterday we gave her a Valium, which did nothing other than make her seriously angry, antsy and feel like she was crawling out of her skin. It was horrible.

This morning her mania was already much worse: racing thoughts, inability to sit still, talking about nonsense, laughing all the time, impulsive ideas; the list goes on. And she had less sleep…she slept less than seven hours last night and usually needs around 10 hours sleep.

Early afternoon we agreed to give her 5mg of Abilify (a med she hasn’t taken for a long time due to akathisia as a side effect, but it’s the only anti-psychotic we have in the house that worked to some extent).

The med made her feel weird. Sleepy, stuffy headed and slow. She had a couple hours nap and was still groggy when she woke up. Tomorrow we will give her another 5mg, but later in the day / an hour or so before bed.

We need the NHS to offer us that appointment with a psychiatrist.

Nobody will prescribe anti-psychotic or mood stabilising medication until she has been seen by a psychiatrist, but they aren’t rushing her to see one. Neither of us can live this way. I hope she adjusts to the Abilify and it can help curb the mania AND psychotic symptoms a little…I just hope we have enough in the house to last us :/

6

Please tell me this isn’t mania…

Gog here!

Anon is feeling…odd. So odd in fact that we just gave her half a Valium to try calm her and help her feel closer to what counts as ‘normal’ for her.

Firstly: the NHS still hasn’t tried to ring us back concerning getting Anon further help. They tried to call us just once, on Tuesday, and we can’t call them back – when you try the number an automatic message says this number can’t be called, but don’t worry because “we will call you back very soon”. Four days and counting!

Secondly these past few days we have noticed Anon’s mood is changing – we’re not sure if she’s going manic. If she is going manic, this will be the first time she has been manic in a long, long time!

Before Anon started experiencing psychosis every day she was only psychotic during manic episodes. It’s only over the past 18 months that Anon has begun experiencing psychotic symptoms outside of mania, and we didn’t really realise until this summer how bad it had gotten. Now she suffers psychosis many, many times a day. Why? That isn’t Bipolar!

We’re concerned that, if she is going manic, will her psychosis get even worse because that’s when she used to experience it?

Also, what should we be doing?

The last two GPs we dealt with at our local surgery were absolutely horrendous, and Anon’s  good GP isn’t available for another three weeks. Where else do we turn?

If Anon is going manic, does this mean she still has Bipolar? If she does, why does she experience psychotic symptoms every day outside any clear mood episode?

Anon just had a Valium to see if it would help calm her down, but the number of Valiums the GP gave us won’t last long at all – we were already supposed to have used them all! What can we use after that to help ease her symptoms?!

Anon wants to go back on Abilify, as we still have some lying about and she is sick to death of her mental health. I’m not against the idea and even Anon’s dad told her she should try a small dose of Abilify because the NHS aren’t trying to help her at all.

I just don’t want her to have to deal with the akathisia. Not only did it suck but Anon hated that.