Tuesday, 15 January 2019

A Blackout, A Fall, GP ENT Follow Up and a Gold Star for Amy!

I've had some eventful times recently, with my health!

Firstly, I had a sort of Blackout about a week ago. My dizziness and faintness have been quite bad and about a week ago I was standing by my bookcase, fussing Billie, and suddenly had a very temporary loss of consciousness. I caught myself in time before I fell, but I have been feeling very weird since.

I've been a lot clumsier since this "blackout"; knocking drinks over, bumping into things/people, and tripping up a lot. This came to a head when I had a bad fall 3 days ago. I was sitting on my armchair, and had to get up for something. I was wearing my pyjamas at the time. I rose from the chair and stepped forward, only to get my right foot caught in my left pyjama bottom leg. I fell forward, turning my left foot right over and spraining it, then fell into the bookcase and back against the wooden part of the armchair. My back is scratched and bruised, my foot/ankle are bruised, and my ankle is sprained. I don't do things in halves!

I decided to document these things, as I had a GP appointment yesterday; to discuss my first ENT appointment. This was with a GP I hadn't seen before, so I was quite nervous, though keen to let her know what had happened.

Unfortunately, the surgery was very busy when I arrived, and I think this was why the GP acted the way she did. She rushed me and, I felt, was dismissive of my symptoms. She quickly went through the ENT letter; where it mentioned the dizziness and faintness and the fact that they wanted me to change from Stemetil (Prochlorperazine) to Cyclizine (both anti-sickness medication), because they felt the Stemetil was making my dizziness worse.

I took my chance to tell her about the blackout. She felt it wasn't a proper one as I hadn't actually collapsed to the floor and she wanted to know if I had fainted recently. I said not recently, but I had fainted once, five years ago. I wasn't sure if it was related, but I thought I'd mention it just in case.

I also mentioned the fall, and showed her my foot. She didn't seem that bothered about it but she did examine it (slightly) and told me it was probably a sprain, but as it wasn't swollen, she wasn't concerned.

She next said to me (I'm paraphrasing here) "Well your blood tests and ECG were normal. Do you think the dizziness and faintness are stress related?"

This was quite an annoying thing for her to say. I know certain symptoms can be stress related, but I know that mine aren't. I have had stressors recently, but they haven't coincided with the dizziness and faintness. I experienced them months before anything particularly stressful happened.

She wasn't going to refer me to the Cardiologist either, but I stood my ground and said that the other GP was going to refer me so I would prefer this. Thankfully, she listened to me, and made the referral. She typed a lot, and I think mentioned the fainting five years ago, the almost-blackout, and the fall, in the referral request.

Lastly, she handed me my Cyclizine prescription, and said that the Cardiology appointment would get in touch with me.

Overall, the appointment wasn't a bad one, because I got what I needed (primarily, the referral). I do wish she'd rushed me less and not been dismissive though. Maybe it was a bad day for her, I won't take it personally.

I awarded myself an invisible Gold Star for holding my ground and asking for what I needed though. Past me would not have had the courage.

Monday, 31 December 2018

Self Care, Distractions, and a Difficult Time of Year

(TW: Mentions of self harm, overdose, and hallucinations)

If you read my last post, you'll know that I've been through a very difficult time recently. I have struggled with Depression, distressing thoughts, panic, self harm, overdose, and hallucinations. Crisis team were lovely every time I phoned them, and I had to have two calls with them after the Community Mental Health team were unable to give me any help. CMHT just gave me advice to see my GP for a meds review, and to ring the charity numbers they had given me for bereavement and domestic violence.

I left that appointment feeling very disheartened and lost. I felt abandoned by the mental health team, and I felt there was no point in ever ringing them again. I had reached my limit for mental health care with that team, I would have to look elsewhere. I don't blame the team. They did what they could, with the very little resources the government has left them.

I rang my GP and had an urgent appointment that same day. I started to cry and panic as I explained everything, but luckily my GP was very supportive, compassionate, and a good listener. I was told to increase my dose of Pregabalin, as this can apparently help with anxiety and depression. I was also (reluctantly, but I gave good reason to ask for this) given a small prescription for Diazepam, to take on my most distressing days.

Another thing that triggered the most recent mood swings and distress was a dreaded white envelope through the post. I was to be reassessed for ESA. I thought reassessments had stopped for people with long term conditions, but maybe they have now changed those rules? I filled in what I could; using online guides and previous scans of my last ESA form. I also rang my GP today and asked for a supporting letter. She did not say what she would write on it, but she did mention something about referral letters and my notes. Hopefully this means she will attach extra evidence. Anything to back up my claims about my health is useful.

If you are to be assessed/reassessed for ESA, and have received a capability for work form, I highly recommend visiting the website Benefits and Work. This website gives a large amount of information and complete guides for filling in various benefits forms, attending assessments, appealing, and attending tribunals. I also recommend becoming a member (just £19.95 for a year) as this gives you access to much more specific information.

Today, I am struggling to fill in my form, despite the information I have to help me. Forms like this, ask you to talk about such personal information about physical and mental health that it can be quite daunting and distressing. I am focusing on all the negatives, the struggles, the pain, the mental distress etc and it is no wonder that I'm feeling all of these negatives intensely. I have been dissociating ever since I started filling in the form today.

As well as dwelling on this, I have been scrolling Facebook and feeling jealous of all the achievements my friends have completed. Whether it be a career change, travelling the world, a wedding, an engagement, an anniversary, or a birth, the world seems to be turning very quickly, and I feel as if I've been standing still. It is really hard to focus on my own achievements when, in comparison, they seem so minute. I wrote a status about this, which I will post below:

I'm trying not to compare myself to other friends who have achieved so much this year. By now, I would've loved to have got my Doctorate in Clinical Psychology, be working in mental health, be married maybe with a child on the way. Instead, my illnesses persisted, and I guess the biggest thing I've achieved this year is surviving it. Shout out to everyone else with that same achievement and rest in peace to those who did not survive this year 

If you feel that you have not achieved much/anything this year, I assure you, you have. You survived this year. You got through the days, somehow. And I am so glad you got through it. You deserve to have a happy life; achieving things (no matter how small) at your own pace. You matter, you are valid, and you deserve to be happy with life regardless of what you can or cannot do. You do not need to be productive to be a human being deserving of love and respect.

I will be having a quiet New Year's Eve tonight. I will have a prosecco or two with my parents, and I will be continuing doing lots of self care to get me through.

Whatever you do, I hope your New Year's Eve is as lovely as possible, and I hope next year will be a much better year for you. Goodbye/Good Riddance to 2018, and please, 2019, be a good one!


Monday, 24 December 2018

Mental Health Team? What Mental Health Team?

(TW: Self harm, Suicide, Hallucinations, bad mental health service experiences)

I have had a truly awful day today.

Recently, my mental health has relapsed and I've been severely depressed, distressed, even suicidal (it's been a while since I was last suicidal). I have had intense suicidal and self harm thoughts, as well as paranoia about various people and organisations *coughDWPcough*. I have self harmed regularly, had urges to overdose on all my medication, and I took a small overdose the other day.

As well as this, I have had an hallucination. I was in bed (awake, not dreaming) and I saw a large black and red beetle climbing up my bedroom wall, then disappearing into the ceiling. I have had similar hallucinations in the past; very rarely however. Sometimes I have believed they were real, other times I have known they couldn't possibly be real.

I called my local crisis team about three times, bursting into tears down the phone and letting everything out. They knew everything, and had passed the information on to the Community Mental Health Team.

I went to my appointment today, partly feeling it was pointless, partly convincing myself that they will help and hopefully I will get more therapy and a medication review.

Unfortunately, I have received neither.

I explained everything again for them, filled in the paperwork (PHQ, wellbeing etc) which showed that I was severely depressed and not coping well at all. I answered their questions about trauma, triggers, home life etc. The CPN then said that I'd been there a couple of times before with similar issues and had received help both times. She suggested I call Women's Aid (for the abusive relationship I'd been in) and Cruse Bereavement (for the traumatic abortion 10 years ago) and asked if I'd considered Primary Care. I said that they believed I was too complex for them, but I would try.

Other than that, she reiterated that I needed to rely on my own resources, and be more proactive about using the skills I've learnt from therapy. I said I'd tried and struggled to do this, and felt that I needed more support.

Unfortunately, she told me that she could not offer any more support, because a while back the government cut back the mental health team's services and resources quite substantially, and there simply wasn't anymore help available for me. I burst into tears after realising they simply couldn't help. I felt as if I was on my own and that this mental health team barely existed at all. It was in ruins. The CPN even described it as a service that just puts a sticking plaster on service users, before sending them off again and possibly signposting them to other places, charities etc.

I knew resources were tight, but the realisation that there were barely any resources at all was upsetting, frightening even. I feel scared for people in a worse position than me.

We are fighting that voice in our head; telling us we are Bad and do not deserve help. We fight the urges to kill ourselves. We have that little bit of hope that there will be some help there if we ask for it. People keep telling us to reach out anyway. We reach out. We pick up the phone. We are given a face to face assessment and suggestions to distract ourselves, have a cup of tea, have a bath, anything to get us through the days until our appointment.

Appointment day finally comes. It takes all of our strength to tell the CPN everything, we let go as much as we can. We let ourselves be vulnerable in front of this person and at the conclusion of the assessment, there is no help from this team. Sure, we are signposted to other places but the main place that should be there to provide us with something with a chance of helping us cope, improve even, simply does not exist anymore. We are sent on our way with the promise of a letter through the post. We are discharged back to a GP who may not know much about mental health, so cannot help much.

This is the reality. I am not the only one. Something NEEDS to change.

Friday, 21 December 2018

ENT Appointment for Dizziness

This morning, I finally had my appointment at the ENT (Ear, Nose, and Throat) department. This was primarily for the dizziness I've experienced for years; which suddenly worsened around 4 months ago. I get this dizziness (amongst other symptoms) when standing up from sitting or lying down, or from sitting still for a prolonged period of time. I also feel as if I'm going to faint.

Other things, such as physical exertion or overheating, can make it much worse too, and I also experience palpitations, shakiness, nausea, and headaches.

So far, my GP has had blood tests done (all normal) as well as an ECG (normal), and had referred me to physiotherapy to see if I had a neck problem that was causing dizziness. I have neck pain anyway, but don't think this is connected to the dizziness. Needless to say, physio couldn't do a lot for me, so discharged me after an examination and after handing me a sheet of exercises to do. You can read more about my physio appointment here.

Anyway, back to the ENT appointment. Thanks to traffic, I was a few minutes late getting to the department. Thankfully, it wasn't difficult to find, but I had to rush. After about a 10 minute wait, a member of staff (a nurse or audiologist possibly?) called me to a room for a hearing test. This involved wearing headphones and having difference frequency/volume beeps played into each ear. Everytime I heard a beep, I had to press the button on a joystick shaped object that I was given. Some beeps were very hard to hear, and sometimes it was hard to distinguish between that and general computer noises, but I felt I'd done alright. I hadn't had a hearing test for as long as I could remember, so I was expecting to have some issues now.

Once that was finished, I was asked to sit in the waiting room. I was soon called to the doctor's office. I think it was a registrar that I saw, as it was not the consultant named on my appointment letter. He introduced himself, and I promptly forgot his name (typical me!) then he asked what had brought me here today.

I explained about the dizziness and faintness, and he asked what that felt like to me. The dizziness, I explained, felt like the room was spinning. The faintness, like I was about to collapse. I also had problems with balance, that were made worse by the dizziness and faintness. The doctor said that the faintness was not something ENT could deal with, but they could hopefully investigate/treat the dizziness.

He next asked me to let him examine my ears. He said they looked fine to him, so no worries there. He then asked to check my balance by getting me to stand without my stick (I had to keep steadying myself by placing my hand on the desk repeatedly), make marching movements with my legs; lifting them up as high as I could. Next, he asked me to walk heel to toe from my chair to the window, and then from the door to my chair. Both times I stumbled and nearly fell against objects close to me. I was also very wobbly. Once I'd sat down, the doctor conducted some neurological tests; including pushing my arms up against his, following his finger with my eye, then touching his finger, then my nose and repeat a few times as quickly as I could. I just about managed this, but really had to concentrate and was very shaky. He picked up on the shakiness and asked if it was something I experience often. I explained it always happened after any physical exertion. Lastly, he asked me to relax as much as I could, then focus on a spot on the wall, while he moved my head from side to side, slowly then quickly. After a few attempts, he managed this. I was focusing so much that I tensed my neck right up!

After these tests, the doctor asked about medication I take, any allergies to medication (Amoxicillin and Naproxen), current medical conditions, and any surgeries (I've had none). He told me his findings were that my hearing was normal, my ears were fine, but he wanted to investigate the dizziness more thoroughly. He said he would refer me for Vestibular tests, so to wait for an appointment letter for that and then follow up again with him soon. He also said that I should stop my anti sickness medication Prochlorperazine (Stemetil) as this would make the dizziness/faintness worse. He told me that something like Cyclizine would be a better choice. Next, he said I should be referred (probably to Cardiology) for the faintness and that he would write to my doctor to mention that and the anti sickness medication. Finally, he gave me a sheet with exercises to do, in the hopes of relieving my dizziness.

Overall, I felt the appointment went well! I left the hospital feeling well informed, taken seriously, I had clear information on what to do/would happen next and I felt the doctor had been thorough.

My next post will likely be about my latest CMHT assessment. My mental health has declined recently, for various reasons, so I got in touch and cried over the phone to the Access/Crisis Team. I will give much more information in the next post I write.

Depending upon the follow up appointments CMHT give me (if any), my post on the Vestibular tests may or may not be after that.

Wednesday, 12 December 2018

More pain *sigh*

(TW: Meds)

As the weather gets colder, my chronic pain gets more severe. Even on the highest dose of Tramadol (moderate release) I am not getting enough pain relief. I've been suffering breakthrough pain. In a nutshell, this is pain that is not relieved by my usual painkillers. It "breaks through". I tried dealing with it by using hot compresses, TENS machine, CBD oil, and even some old Codeine that was still in date. Most of that didn't work, and the hot compresses only helped a bit, for the duration they were on me. I vented about it on social media and some good friends advised I see the GP.

Another problem I had started three days ago. I woke up with cramp in my left calf which hasn't gone away. I mentioned this to my GP too.

I saw the GP this morning. It was an uncomfortable wait, thanks to the pain and cramping. Eventually I was called through. I wondered whether a quick release opiate (such as normal release Tramadol) could be added on top of the moderate release Tramadol. Unfortunately, she was worried about the risk of overdose, so decided to look for something else.We went through my medication history to see what I have tolerated in the past, and finally decided on either Pregabalin or Gabapentin, as these are specifically licensed for Fibromyalgia. I've been on a low dose of them before and tolerated them, but not found relief. My GP wanted to see if I could start on the same dose then titrate up, and hopefully it'll work. I'm slightly skeptical, but willing to give it a try. I'll blog about whichever one I try (I forget which she decided on) and let you know if I notice any difference in my pain severity. She did actually ask how severe the pain was on a scale of 0-10. I said it tended to be a 7 or 8, so bordering on the severe end. I told her it affected my functioning, and I wasn't able to do the exercise I needed to. She did tell me to try though.

The second thing I needed to tell her about was the cramping in my left calf. I told her how it'd been happening for 3 days now and hasn't subsided at all. She didn't seem worried to be honest. She asked if I'd tried various things such as stretching exercises, hot compresses etc. I told her I had but didn't have any luck. She examined my calf (ouch!) and said it didn't seem very tense compared to the other calf.

Once we'd sorted out my prescription requests, that was pretty much it. I think it was a fairly successful appointment, and the result was what I expected really. I would've been very surprised if she'd prescribed the normal release Tramadol, or Oramorph (which would be wonderful for pain relief but I highly doubt would be prescribed unless I was on the floor screaming in pain).

 My next post will likely be about my ENT appointment for dizziness, so stay tuned!

To all my fellow spoonies who experience chronic pain, I hope you are able to stay warm and dry, with minimal pain xxx


It was Pregabalin that I was prescribed. I've been taking it for a couple of days now. So far, I haven't noticed any pain relief but I'm only taking 150mg per day at the moment. It is making me quite foggy and drowsy though, but I think I can cope with it. Please comment below if you've had experiences with Pregabalin for Fibromyalgia pain. Has it helped you? Were the side effects easy to cope with, or too much?

Thursday, 22 November 2018

Physio for Neck Pain and Dizziness

If you read my previous post you'll know that I have been having some new and worsening symptoms over the past few months; namely dizziness, fatigue, and some neck pain (although I put that pain down to a fibromyalgia flare up). After various tests came back negative, my GP referred me to an ENT specialist and for physio. My ENT appointment is next month, but I had my physio appointment a couple of days ago.

When I signed in at reception, I was given some paperwork to fill out. I had to rate how severely the pain has affected certain activities, and whether I did exercise other than general housework/daily tasks etc in the past week or so. At first, I was thinking of my pain as a whole, but of course they only needed to know about my current problem i.e. neck pain.

When I was called through to see the physiotherapist, I found she was the one I'd seen about my hip bursitis a while back. She asked how I was, then asked me some questions about my neck pain and dizziness. She then got me to sit on the bed while she examined my neck and shoulders. She noted that I had a lot of tension there; which she said is common for people with Fibromyalgia (one of my diagnoses). Next, she asked me to do some movements, to check stiffness and pain when turning my head in different directions. Other than some stiffness when turning my head left and right, there wasn't much else that was noticeable. I explained that I get dizziness when turning my head left to right, and also find I have this weird scratching noise as I turn. I also told her that the dizziness was not only when I do that, but also when I stand from sitting, or sit up for a while. She asked if I'd ever fainted due to this, and I explained that I hadn't, but I'd been very close.

After this examination, she said that she believed the neck pain was due to my Fibromyalgia (which didn't surprise me) and that unfortunately physios can't treat that condition anymore. It is down to GPs and Rheumatologists. I did have a Rheumatologist for my initial diagnosis, but he told me he couldn't do anything else for me, so I don't actually have a specialist for that (or my Joint Hypermobility Syndrome come to think of it).

The physiotherapist gave me a few booklets for Fibromyalgia, Joint Hypermobility, and Neck Pain, which had some exercises in. I'm to keep doing them, but she doesn't need to see me for a follow up.

When I got home, my pain (especially in my neck and shoulders) was horrendous. It had started up ever since the physical examination, and kept getting worse. I took my painkillers (tramadol slow release) but they didn't do anything unfortunately. I really needed something that would work instantly. My pain is a little better today, and I've had a couple of things delivered to hopefully help. These are an unscented wheat bag to go around my neck and shoulders, and a bottle of orange flavoured CBD oil from https://okcbd.co.uk/ . I have only had a couple of drops today, so cannot say if they are working yet, but in the next week or so, I think I'll write a review on my blog, for anyone thinking of trying this oil.

I'll leave it there for now, I hope you are all as well as possible!

Tuesday, 23 October 2018

New/Worsening Symptoms

I thought I'd write another quick updates post as, for the past 2 or 3 months, I've been having some suddenly worsening symptoms. My fatigue has been very bad (to the point where it's taking all my effort just to stay awake) and I've been having a lot of dizziness when sitting up or standing for a while.

I'm also finding that I crave salt, and after eating carbs, my dizziness worsens. I keep getting feelings that I'm going to faint too, but I've only ever fainted once in my life (about 5 years ago).

Other things that make my dizziness worse are:

  • overheating
  • turning my head
  • overexertion
  • pain
I've seen the doctor twice about this, have had blood tests (all normal) and an ECG (normal). My GP has referred me for physio (as she thinks I may have a neck problem) and to an ENT specialist to see if my hearing is affecting this. 

I did ask if my symptoms could be caused by a condition called Postural Orthostatic Tachycardia Syndrome (POTS) and the GP said she doesn't think so, because my ECG was clear, but she will refer me to a Cardiologist (who will assess me for this amongst other things) if ENT and physio can't help much. 

I have my first Physio session next month, but I'm still waiting for my ENT referral letter. I'll update my blog accordingly.

UPDATE: My referral came through! On 21st December I have an appointment at Russells Hall Hospital in the ENT- Neurotology department. I'll write a new blog post when I start physio and then when I have my first ENT appointment. Please comment below if you've been referred to a similar department for dizziness. How did it go? What tests did they do?