I gave some insight recently into problems I’d had which led to a diagnosis of Vestibular Migraine. I posted as Everywhere. However, Everywhere disappeared and is now nowhere to be seen in the members list. As a result of an HU glitch which took them a week to sort out, I had to rejoin as Everywhere2.
Everywhere’s posts are still on forum but you probably won’t be able to find them. For that reason, I’ll recap briefly on what happened to me and what’s happened since.
One afternoon a couple of months ago, I suddenly without any warning began to feel ‘weird’. Falling over, loss of balance and dizziness. I felt ‘spaced out’ and not ‘with it’. At first I thought it was Labyrinthitis so I tried to ignore it. After a day or so, my vision was affected and my speech was slurred. Then intense nausea set in. I had an untreated sinus infection at the time so thought perhaps these symptoms were associated with sinusitis.
I called my GP and was ‘triaged’ by a Nurse Practitioner who told me to go to the surgery straight away. I arrived to find that she’d booked a double appointment. She asked me a lot of questions, which I answered like Edna the Inebriate Woman (BBC Play for Today 1971 - never to be forgotten) while falling over, throwing up on the surgery floor and abjectly failing all the neuro tests which she was trying to carry out.
She sent me straight away to hospital as she suspected I’d had a stroke or was having one then. A CT scan eliminated the possibility of a stroke but there were concerns that there were clear neurological problems and that the fact that they’d begun suddenly were a red flag.
I was eventually diagnosed with Vestibular Migraine. Interestingly I’d only had a vague headache with these symptoms but that isn’t unusual with VM. The vestibular / neurological symptoms often occur in the prodrome of a migraine and can be up to two days before the migraine occurs. Sometimes they occur concurrently with the migraine. The migraine itself is usually (but not always) Basilar Migraine (migraine with brainstem aura). The condition is very frightening, particularly if it begins suddenly.
I saw a neurologist 6 weeks ago who examined me and asked me about my stress and anxiety levels. Very high. BP also very unusually very high indeed. He made the point that there were four or five triggers for this type of migraine but that stress and anxiety were the most significant triggers. He prescribed Amitryptaline starting at 10 mg to be titrated by 10 mg every two weeks until I reached 50 mg, the target dose. He said that this drug would stop migraine, help the neuropathic pain which I have and also help with anxiety. He warned that I would be very sleepy and that I should have the medication two hours before bedtime so that I wasn’t too groggy in the morning.
I looked forward to being enveloped in the comforting glow of grogginess as the drugs kicked in but it was not to be. After the first couple of doses, I stopped sleeping but was restless, agitated and hyperactive during the day. My anxiety increased as the dose increased and I felt desperate. I was frightened, irritable, aggressive and generally vile. I picked endless fights with OH about the way he loaded the dishwasher, what we were having for tea and why I ever married him in the first place. I couldn’t understand what was happening and felt as though I was standing outside myself watching some crazy woman who definitely wasn’t me.
By the time I’d been on 30 mg for a week, I was desperate. I phoned the GP surgery and my request to see a doctor was triaged by a receptionist who said that I’d feel better as my dose increased. After I’d ranted for a couple of minutes, she allocated my ‘call back’ to the ‘in house’ pharmacist. At the time, this really annoyed me as I didn’t see how he could help. I’m really glad that he did call me back though. He was very helpful and I realised then just how much more Pharmacists know about drugs than doctors do.
I explained how I felt and asked him if things would resolve as the dose increased. He told me that I had to stop Amitryptaline straight away as I was having a Paradoxical Reaction. He explained that such reactions are rare, affecting about 1% of the population. He looked at my medical history and prescribed Pregabalin. My heart sank. I know that it’s an anti epileptic and has its own list of problems. He told me that it was licensed for General Anxiety Disorder (GAD) and would also help with neuropathic pain and migraine. He started me on 75 mg morning and night and wrote to the neurologist.
I had to stop the Amitryptaline one day and start the Pregabalin the next. I expressed some concerns about how my poor brain would cope with now being rewired from the other direction. He told me to try to be calm and just let the drugs work.
My speech was virtually unintelligible as I was speaking to the Pharmacist and had been like this since I began the Amitriptyline. It wasn’t the ‘slurred’ speech associated with the VM. My jaw, tongue and face were stiff and aching and my larynx wasn’t happy. I tried to explain that my speech was slow and robotic (a tad unnecessary as he’d been listening to it for over ten minutes) and he said that this was called Dystonic Muscle Failure. What??? After the call ended I researched this issue on the internet. Dystonia is caused by low dopamine and in more severe cases it’s a symptom of Parkinson’s disease. It’s also significant that the body increases cortisol production to compensate for low dopamine. This would explain my ‘preggy belly’ which is at odds with my slim limbs and face. That, in turn, would also explain why so many people have unexplained weight gain when they have certain ADs. It isn’t all about what you eat as doctors would have us believe.
I’ve now been on the Pregabalin for just a week. It’s likely that I’m still ‘washing out’ the Amitryptaline. I’m not yet feeling any benefits from the effect of the newly prescribed drug but I’m feeling better as I now understand what’s happened to me.
Yesterday I had another appointment with the neurologist and he explained to me that my brain was trying to ‘shut down’ to protect itself. Sensory overload, long term stress and unresolved anxiety have taken its toll. I’d had an MRI of my brain done after my first appointment with him and he’d got the results of that. Everything normal except some ischaemic changes which are nothing to worry about.
My husband is a kind and loving man and has supported me through many illnesses and rough times. He understands what’s been happening - but I still don’t. How on earth can a drug which was meant to help me cause such mayhem?
My mind drifts back to 2014, three years after a total thyroidectomy. Doctors were still fiddling and faffing about trying to sort out my thyroid levels and I was undermedicated for a long time. I hadn’t yet joined this forum and had no idea what was happening to me. I was depressed, anxious and exhausted. My GP, much against my better judgment, prescribed Prozac. What I now know was a paradoxical reaction began very quickly. They treated my symptoms by increasing the Prozac until I was totally at my wits end. One day in August 2018, I told my husband that I wanted a divorce. He was flabbergasted. I went into town, bought a sun hat from M&S and went to see a solicitor. As you do.
We separated in November 2018, sold our lovely house and bought properties 100 miles apart. We were both overwrought and confused. My husband just wanted his wife back - but I didn’t know where she was. He phoned me every day to see how I was and when Lockdown came, he asked me to go and stay with him. I did and we spent many hours reliving the good times in our marriage and decided to start again. The divorce never happened. I never applied for the Decree Absolute. I couldn’t remember why I’d ever behaved in the way I did. I couldn’t remember why I thought I’d fallen out of love with my husband.
In late 2021, a Pain Consultant prescribed Duloxetine (an SNRI antidepressant) for the relief of chronic pain caused by Peripheral Neuropathy. After about a month, I began to feel unwell. My anxiety levels increased as did irritability and argumentativeness. I didn’t associate this with the Duloxetine. I thought it was Lockdown blues combined with some family issues. I told the doctor I wanted to stop it but she told me that it was a good drug and to ‘stay with it’. I was miserable and snappy. My husband put it down to pain issues and was, as ever supportive. I lost friends and lost my confidence completely. I felt unable to mix with other people. My perceptions of myself were not ones I recognised.
We moved to NW England a year ago today. I was still fighting what I now know to be the paradoxical effects of Duloxetine. I decided to withdraw from the AD but didn’t do it slowly enough and rebound anxiety plagued me and led to the onset of migraine and neurological symptoms as I fought to stop history repeating itself.
I now understand what’s happened to me during the last 9 years. I’ve learned quite a lot about how the brain works. I know that there are no drugs to remove the pain of anxiety and depression. In my case drugs have created hideous side effects. We often walk along the beach when all the crowds have gone. We talk to each other, listen to music and take pleasure in small things. I avoid stressors such as crowds and noisy places. One or two external stressors cannot be removed so I am learning to practise acceptance of things I cannot change.
This forum recognises that doctors often fail to resolve, or even recognise, thyroid problems. Far, far worse though is the fact that they destroy minds and lives by inappropriately medicating with psychotropic drugs when optimally dosing with the correct thyroid hormones is what’s needed. Women suffer in similar ways with oestrogen and progesterone deficiencies which are treated with antidepressants.
it’s ironic that as a child of the fifties, I was never drawn into the drug culture of the time. I never smoked cannabis, sought out heroin or cocaine and my alcohol consumption was limited to occasional Cherry Bs or Babychams. Only when I reached sixty years of age was I ever offered mind altering drugs - and these came my way via medical professionals who thought that pharmaceuticals were the key to better health for minds and bodies.
Pft.
I thought I was getting better ...
Do I rearrange Endo appointment?
NHS Endocrinologist just told me I was hypERthyroid not HypO, and to stop T3 as it was damaging me. Am I wrong?!
Where do I go from here?????
First Endo appointment was not what I expected!!!
