Wednesday, 18 September 2019

Getting the ball rolling: Primary Care

I finally feel like I'm just about ready to start Trauma Focused CBT. This is offered through my local Primary Care Mental Health team, and I can self refer for assessment. Last week, I rang up to give my details and was offered a telephone assessment last Thursday. They originally wanted to give me an appointment for last Wednesday, but after discussion amongst themselves, they decided I needed to speak to someone more senior because of my complex needs.

The telephone assessment went really well, and I managed to remember everything I needed to say (prompted by my notes as well, of course). The first part of the assessment was the more "objective" part; where we went through my answers to the PHQ9 and GAD7 questionnaires, as well as questions on specific phobias, functioning, employment, and recent appointments. My scores for the PHQ and GAD questionnaires were quite high; indicating my levels of Depression and Generalised Anxiety are quite severe. I knew this beforehand, and the complex issues that form part of my mental health problems just exacerbate those levels too. It's like my brain is constantly battling itself!

I was asked how I had been feeling recently (awful to be honest), how my family life was (ok, but a lot of stress about various things), my aims for therapy (to be able to talk about my termination with others, and help people who have been through similar experiences) and why I decided to contact the service this time (I was fed up of how easily triggered I got, and I want help to change this).

The telephone assessment was only supposed to take about 30 minutes. It ended up taking an hour, 10 minutes! Thankfully, I was given time to explain everything, and I certainly wasn't rushed! I do hope this helps them to get an idea of my needs and aims though.

The day after the assessment, I received a phone call to say they'd accepted me for CBT (I'm hoping they mean Trauma Focused, but we'll see).

I seem to have a lot of ideas for blog posts, and not enough energy to get them past a very rough draft stage! I can't promise my next post will be about my mental health, but you should hear from me, for updates on that subject, soon.


Friday, 13 September 2019

Another ENT follow up, and a Chronic Vestibular Migraines diagnosis

Today, I had my second follow up with the ENT department. I saw the consultant himself this time, and he was a very pleasant man. He introduced himself and asked me to take a seat, before asking me how I'd been. I told him that things were pretty much the same as before. My balance hadn't improved, despite the physio exercises, and the dizziness and flashing lights/floaters were pretty much the same too.

He told me the results of my Vestibular tests were relatively normal, so he didn't think it was my ears that were affecting my balance etc. He said it was more of a "central" problem.


I found he took me seriously and was sympathetic to my struggles with my physical symptoms. I also told him my physio had told me to speak to the doctor about Vestibular Migraines. The consultant wholeheartedly agreed with him and gave me the formal diagnosis of Chronic Vestibular Migraines

I've included a link which explains what Vestibular Migraines actually are, but these are the symptoms I experience:


  • Dizziness: This tends to be all the time, but I do get acute bouts of dizziness where I feel as if I am going to fall over or faint
  • Balance Problems: Again, I feel like I'm going to fall over. It is the primary reason why I use a walking stick, and is a problem I've had for years. 
  • Flashing lights: This does what it says on the tin. They are flashing lights in my field of vision. They can be incredibly distracting and I cannot concentrate when there are lots at a time.
  • "Floaters": These are little shapes (wiggly lines is a typical one) in my field of vision. They float around then disappear
  • Sensitivity to light/sound: I don't always get this, but I have noticed it happen a lot recently.
  • Some nausea: This tends to come on with the acute bouts of dizziness
  • Migraine headaches: I do still get classic migraines (with the headache) now and again. As I've experienced classic migraines in the past, the ENT consultant says I am more susceptible to Vestibular ones now
Vestibular migraines don't typically occur with the classic type headache/s. The primary symptom tends to be dizziness, so it is not usual that someone would think they are having a migraine at the time.

After I'd explained my symptoms and the consultant had given me the diagnosis, he wanted to know what medication I take. I listed off the medication that I could remember, and he told me that some of the medication (namely the Tramadol) could be exacerbating the dizziness, as it works as a sedative. 

The next thing he suggested was to start by finding my triggers and exclude certain foods to see if they affect the migraine symptoms. He also wants to see me in about 3 or 4 months time


Overall, I'm very pleased with how the appointment went and how I was treated. Most things were discussed and at least I'm still under the care of ENT.

Do you suffer from Vestibular Migraines? Please comment below with what helps/makes them worse.


Resources

Vestibular Function Tests: https://www.stgeorges.nhs.uk/service/general-medicine/audiology/vestibular-balance-and-dizziness-service/vestibular-function-tests/

Vestibular Migraines: https://www.webmd.com/migraines-headaches/vestibular-migraines#1

Floaters and flashes in the eyes: https://www.nhs.uk/conditions/floaters-and-flashes-in-the-eyes/


Tuesday, 10 September 2019

"I can feel it in my bones"

The title describes a phrase I use very often, when it comes to some of the pain I experience with Fibromyalgia. As Summer ends, Autumn begins, and with it come stiff breezes and general cold, I really do feel it in my bones and it makes moving my joints very difficult.

I wake up with incredibly stiff joints, and the cold weather means it takes even more mental and physical effort to get out of bed and face the day. I know that the stiffness will ease, as long as I make sure I keep warm and moving, but the initial pain that comes with the stiffness is incredibly hard to push through.

Keeping warm of course is very important for people with Fibromyalgia. So is trying not to overheat. We often find it hard to regulate our body temperature, and being too hot or cold can cause all sorts of symptom flare ups. Below are my lists of symptoms that flare up when I'm too cold, and when I'm too hot.


When I'm too cold:


  • Joint pain
  • Nerve pain
  • Muscle cramps
  • Joint stiffness
  • Headaches
  • Muscle twitching
  • Fatigue

When I'm too hot:

  • Dizziness
  • Weakness
  • Fatigue
  • Subluxations
  • Joints that are "too loose"
  • Sweating
  • Faintness
  • Sleep problems

So, what do I do about it? Well, I can't completely control it obviously, but there are some things I can do that may help. These include:

  • Drinking lots of water/squash. I use a bottle that has measurements with times at certain points. I have to make sure I've drunk enough by the time indicated on the bottle. 
  • Have light salty/sweet snacks. This helps keep my electrolytes up and sometimes helps the dizziness
  • Sit down whenever I need to, if possible. I have to rest often, whether too hot or too cold. This may help the dizziness
  • Have naps, but not too late in the day. I aim to nap around 2 or 3pm if I'm not at an appointment, meeting a friend etc. If I haven't rested by that time, I do usually feel extremely fatigued, especially if I am too hot. Some days my body will reserve more energy however, so I can do a bit more in my day.
  • Wear layers instead of thick jumpers. This way I can add more if I'm cold, or take more off if I'm hot. 


Do you have problems with temperature regulation? Comment below with your tips for dealing with it!

Thursday, 5 September 2019

Physiotherapy for Dizziness and Balance Problems

Over the past few months, I've been having physiotherapy for the dizziness I experience daily, and the balance problems I've had for years.

My first session consisted of a long assessment of my problems, and going over the forms that I had filled in prior to the appointment. I was asked all sorts of questions, including about any other symptoms I have, how severe, how often etc. I mentioned about headaches that come with the dizziness sometimes, as well as the flashing lights/"floaters" I get in my line of vision most days. I also have had a few falls; where my knees or ankles have just given way. I've bruised like a peach and sprained ankles because of those!

After all of the questions had been answered (and I was pretty exhausted), my physio decided to do a few tests; starting with blood pressure testing when lying down for 10 minutes, sitting up, and then standing. At the time, I was being investigated for symptoms of Postural Orthostatic Tachycardia Syndrome with a 48 hour portable ECG (the results turned out to be insignificant, so I never got round to having the tilt table test). The blood pressure results were relatively normal, so the physio said that excluded a few things (he didn't specify what).

Just before the session ended, my physio gave me a few simple exercises to do (If I remember correctly, they involved turning my head to each side, tilting my head each side, and turning my head upwards and downwards slowly) My next session would involve some balance tests.

Subsequent sessions mainly involved asking how I'd got on in previous weeks, how I'd found I'd managed with the exercises, then introducing me to more balance tests and exercises to try at home. Although my balance didn't seem to improve, despite the exercises (which I did do regularly, like a good patient!), I did find my physiotherapist very helpful with advice, and his findings. After speaking about some of my symptoms, he asked if I had been told (by doctors) that I may be suffering from a type of migraine that doesn't always present with the classic headache. I guess I hadn't really thought about migraines, although an optician did mention it to me due to the flashing lights I get in my vision. I'm due another eye test anyway (it's on the To Do list) so they'll probably want to investigate that more. As the flashing lights have been getting worse, and the dizziness hasn't improved, I decided to speak to my GP about it. He gave me Stemetil for the dizziness, but decided not to prescribe the usual migraine medication, as I don't often get the headaches. Sod's law, I'm getting them more now!

As well as this, at my penultimate physio appointment we spoke about my balance, and I mentioned how I believed a lot of it was down to my hypermobility. My ankles are very hypermobile and often give way. I used to get teased at school for falling down suddenly in the playground. I've been embarrassed by falling while in the middle of a town centre as well. Thankfully it's not resulted in serious problems (the worst has been a sprained ankle) but it's not pleasant anyway. I told my physio that I was thinking about asking my doctor to refer me to a rheumatologist to see if my Hypermobility Syndrome was actually Hypermobile Ehlers Danlos Syndrome . They used to be interchangeable diagnoses, but the criteria for HEDS is stricter now and they are believed to be different points of the Hypermobility Spectrum Disorders

I expected the physio to roll his eyes at me and dismiss my concerns, like various healthcare professionals have, but he actually took me seriously! He told me to definitely talk to the doctor and get a referral, so I can be properly assessed.

My last session was earlier today and when I told him the doctor had referred me to a Rheumatologist (Finally!) he was pleased, and wanted me to make sure the one I see either has a specialism in Ehlers Danlos Syndrome, or can refer me on to a Rheumatologist who specifically deals with EDS patients.

He was also pleased that I'd seen the doctor about my migraines. It looks like I've now been diagnosed with Vestibular Migraines . If the Stemetil doesn't help the dizziness or other symptoms, he will refer me on to a neurologist.

Lastly, we spoke about my balance problems. The physio decided there was no more he could do for me, so he has referred me on to a specialist rehab centre for balance problems. I'm not sure how long the waiting list is, but apparently the sessions are longer and the exercises a lot more intense. This should help my balance and give me better quality of life though.

Overall, I've been very pleased with these physio sessions. I may not have noticed improvements as such, but I've gained so much knowledge and advice, as well as support and advocacy from this physio, and I think these are invaluable. I feel that, with my physical health at least, I am starting to be taken seriously and actually getting the referrals and treatment I need.

I will of course blog about my referrals, when they finally come through, but in the meantime, I will try to keep you up to date with my physical and mental health progress. My next appointment is with the ENT specialist, so hopefully I will get more tests and/or treatment for the migraines!

Resources

1. Postural Tachycardia Syndrome: https://www.nhs.uk/conditions/postural-tachycardia-syndrome/ 

2. Tilt Test: https://www.bhf.org.uk/informationsupport/tests/tilt-test

3. Joint Hypermobility Syndrome: https://www.nhs.uk/conditions/joint-hypermobility-syndrome/

4. Ehlers Danlos Syndromes: https://www.nhs.uk/conditions/ehlers-danlos-syndromes/ 

5. Hypermobile EDS and Hypermobility Spectrum Disorders: https://www.ehlers-danlos.org/what-is-eds/information-on-eds/hypermobile-eds-and-hypermobility-spectrum-disorders/

6. Vestibular Migraines:  https://www.webmd.com/migraines-headaches/vestibular-migraines#1