Resources for the vaccine injured
There is no ‘one size fits all’ but, in addition to receiving a diagnosis and treatment, these are steps to be aware of:
- Report your symptoms to the Yellow Card Scheme. When doing so, open an account with them and keep screenshots of what you have submitted. They will email you a receipt. It is important to update these from time to time and ensure they do not go ‘missing’
- Find out if you are entitled to any benefits
- Apply to the Vaccine Injury Payment Scheme
- Consider joining a support group. If you were vaccinated in Scotland, you can join ours HERE If you were vaccinated elsewhere you can find a group on our GLOBAL page.
- Find out what ‘self help’ is available
- Be aware that brainfog is a common issue, so ask a friend or relative to help you
While we hope the resources here help to inform you, please do not substitute any information you find on this website or its related links for adequate medical care, diagnosis, and/or treatment from a medical doctor. We strongly recommended that before you act upon any information here, you consult a qualified medical practitioner.
Common symptoms include: allergy type reactions, brain fog, memory loss, insomnia, fatigue, dizziness, shortness of breath, chest pain, muscle twitching, muscle weakness, numbness, muscle or bone pain, paralysis, stabbing or stinging pains, internal tremors, inability to regulate body temperature, dry eyes and mouth, urinary tract issues, GI issues, burning or tingling.
Common Diagnosis Include:
- Mast Cell Activation Syndrome
- Transverse Myelitis
- Autoimmune conditions
- Guillen Barre Syndrome
- Vaccine Induced Thrombosis
- Viral reactivation
While it is important to get a diagnosis from a qualified medical practitioner, our experience of locating practitioners on the NHS that understand MCAS and POTS is variable. The encouraging news is though, that this is changing. So please do consult with your GP first and … you never know! If you do need help locating a doctor, please join our group and we would happily help.
Are you suffering with sudden allergic type reactions? These could include hives, itching, burning, flushing, mouth and throat itching or burning, runny nose, throat swelling, eye irritation, loss of voice, breathing issues, feeling dizzy or faint, rapid heart rate and runny nose. Along with these, do you have painful joints, neurological issues, unexplained cardiological issues and/or anxiety, cramping, or urinary issues?
MCAS affects multiple body systems at once, wherever there are connective tissues. It is treatable and there is loads you can do to help yourself. Read more here
Postural Orthostatic Tachycardia Syndrome (POTS)
A lot of people with POTS suffer from breathlessness and can find it difficult to stay upright (this is known as orthostatic intolerance). It affects heart rate, blood vessel dilation, blood pooling, movement of food through the digestive system, and body temperature.
It can be treated by a physiotherapist, training for your breathing, drinking lots of water and taking extra electrolytes, wearing support stockings and by taking medication. Here are a a couple of useful resources:
Dysautonomia is caused when your autonomic nervous system (ANS) malfunctions. You might have issues with involuntary functions—things that happen without thinking—like your heart rhythm, temperature control, or breathing. People with MCAS or POTS often have these issues. There are plenty things you can do to help. Find out more here:
Parasympathetic Nervous System
To help heal dysautonomia it is important to work on our parasympathetic nervous system. There are lots of ways to do this: box breathing, meditation, humming, singing, hugging, ear massage to stimulate your vagus nerve, praying, cold showers over your head for one minute, spending time in nature, brain retraining programs such as Gupta. There are loads of types of meditations: centering prayer, body relaxation such as YogaNidra, ones that focus on your emotions and letting go. The important thing is to PACE yourself, not feel obliged to overdo things and never be rushed.
When you are brain fogged and ill, the pressure of finances can be overwhelming. There are LOADS of places to go for help. Citizen’s advice and Money Matters for starters. There are lots of different benefits available, depending on your circumstances and both citizens advice and Money Matters will help you apply. You may be entitled to council tax relief or Child Tax Credits too. Ask a close and trusted friend or family member for help if you haven’t the capacity to cope mentally with it all. If you call Social Security Scotland on 0800 182 2222 to apply for ADP, they’ll take your details first and then you can ask to make an appointment for someone from the Local Delivery Team to come out and help you. They will also do it by videophone or telephone or even come out and do a personal visit.
You may also be entitled to the Vaccine Injury Payment. In order to be eligible you need to be able to demonstrate that the vaccine clearly caused your illness and also that you are 60% disabled. People in our group have gone through this process so would offer tips and advice.
Apart from working on your nervous system and, of course, seeing a doctor, and the things already mentioned, there is still more you can do to help yourself.
SET BOUNDARIES – Decide what you can cope with and what you need/want to do and stick to that. Don’t be ashamed to say no.
ALLOW PEOPLE TO HELP YOU – this makes them feel better and frees up time and energy for you to do other things to get well – like resting!
PACING – intersperse activity with periods of rest. Perhaps 30 mins of each – work out what is good for you
AVOID NEGATIVE PEOPLE – when you are trying to get well, it is ok to be a little selfish!
TAKE SUPPLEMENTS AND DO YOUR RESEARCH CAREFULLY. Many vaccine injured people take magnesium, Vit D3 &K, turmeric with black pepper, omega 3, Vit C and some need Vit B12 & folic acid. It is very important to check with a medical practitioner because even supplements can interact with medications. Some people with MCAS can’t tolerate vit C. For a guide to what supplements are helpful check out the FLCCC protocol for vaccine injury. For ‘Clean’ and pure supplements try British Supplements or Ethical Nutrition.
Some of us need to alter our diet – Some of us find we have to cut out dairy and gluten – others don’t. It is a good idea to cut out sugar and caffeine and any processed foods that could cause inflammation. If you have MCAS you may find you are intolerant to a lot of foods and medications. These are NOT NECESSARILY ALLERGIES but your mast cells reacting to histamine/oxalates/salicylates. You can find out how to figure out your diet by following an elimination diet or often you may need a low histamine diet until things settle down. The Sighi list is recommended by a lot of doctors and you can read about histamine free diets here. The Sighi supplementary leaflet is here.
DEVELOP A GOOD SLEEP ROUTINE. How? Avoid electronic devices a couple of hours before sleep time. Your bedroom is for sleep, relaxation and intimacy only – no work or devices! Before bed, turn off all bright and blue lights and light candles. Have a warm (not hot) bath. Go to bed every night at the same time and get up each day at the same time. When you wake up, get outside in sunlight immediately, or stand or sit at a window for a few minutes. You can read more here.
Mental Health Crisis
Brain inflammation (which is common in our situation) can PHYSICALLY cause issued with mood regulation and add to that, dealing with chronic illness is, in itself, emotionally challenging. Talk to trusted friends and relatives, but also join a support group of people who understand what you are experiencing and speak to your GP. The NHS has some useful audio guides. We can be afraid of gaslighting and being told our illness is all in our head if we admit we are experiencing anxiety, but there are loads of apps and organisations that can offer confidential help.
- Breathing Space Scotland is a free and confidential phoneline service for anyone who is experiencing low mood or depression, or in need of someone to talk to. 0800 838587. Open Mon-Thurs 06:00 to 02:00, Fri-Sun 18:00 06:00.
- Samaritans Phone: 116 123 (Freephone 24 hours a day, 7 days a week) allow people to talk about their feelings of distress and despair and offer confidential, nonjudgmental support.
- Mind – Promotes the views and needs of people with mental health problems. Phone: 0300 123 3393 (Monday to Friday, 9am to 6pm).
- Rethink Mental Illness – Support and advice for people living with mental illness. Phone: 0300 5000 927 (Monday to Friday, 9.30am to 4pm).
- Calm Harm – a free app designed to help people resist or manage the urge to self-harm. It’s private and password protected.
- distrACT – a free app that gives you easy, quick and discreet access to information and advice about self-harm and suicidal thoughts.
- There is a Stay Alive app if you have a smartphone: https://prevent-suicide.org.uk/find-help-now/stay-alive-app/ This is a pocket suicide prevention resource, packed full of useful information to help you stay safe. You can use it if you are having thoughts of suicide or if you are concerned about someone else who may be considering suicide. In addition to the resources, the app includes a safety plan, customisable reasons for living, and a life box where you can store photos that are important to you.
Twitter: @scottish_vig Facebook: (injured and bereaved only) ScottishVIG