Post Vaccine Crash & Trying New Things

Post AZ Crash
When I had my first AZ covid vaccination I had a pretty severe crash which lasted from one week after the jab for 3 weeks and then I recovered to baseline. I wasn’t worried about my 2nd jab and was excited to have it. Literally told a lady in the queue I was excited.

I wasn’t so fortunate with the 2nd jab. A few hours after I started to feel a bad crash. I thought I’d shake it in a week or two with rest and recovery. Instead I had severe fatigue and a return of many stabilised ME symptoms for 3 weeks (I pretty much couldn’t get out of bed which is not usual for me), followed by a further 13 weeks of moderate-severe crash where I could get out of bed in the afternoon doing minimal self care and not much else. I had to pace carefully and just felt wiped and dreadful most of the time. It was very like when I first got ill with ME. Except now I have medication and supplements that help give relief – but the 2nd jab seem to cancel them out.

During this time I had been slowly increasing my Mestinon dosage from 30mg once a day up to 60mg morning, 30mg evening each day. I think without it I would have been headed to being bedbound.

I’d actually started to feel better before that 2nd jab. I had been self injecting with B12 and using folic acid since March (and self monitoring my bloods). The week before the 2nd jab I attended my first event and first overnight in over 18 months (pandemic). I was struggling but with extra B12 injections I felt pretty good. I had expected a crash but it only lasted a day or two. I was back to baseline then I had that 2nd jab.

Although it eased a tiny amount it was monumental to do anything. I had a long awaited appointment to see a private ME Specialist and it was such a huge effort I cannot tell you. I got to observe my body’s response to things that were previously easy but I hadn’t been pushing myself to do before – like walking 10 metres – and I saw a very unwell me.

Quercetin, Vitamin C, Zinc & CoQ10
So at about 16 weeks post 2nd jab I saw a teeny tiny improvement and felt less symptoms at rest. My throat glands started to throb less whenever I moved or thought or stressed or laughed. I hoped it was the start of returning to baseline. This is also when I started on Querecitin. Something I had wanted to try and was then also recommended by my ME Specialist. I think the Quercetin must be responsible for the turn around.

I built up my Quercetin dosage slowly whilst adding in daily extra zinc 15mg (I already get 15mg from my Menopace multivitam) plus 1000mg of liposamol Vitamin C (which agrees with me well unlike other forms).

Over 4 weeks I worked up to 500mg Quercetin three times a day. Then after a few weeks I switched to 750mg morning and evening. I needed to replenish my supply and 750mg quality capsules were available, plus taking it 3 times a day I often forgot the middle dose. I am taking 1500mg because that is what my ME Specialist recommended me to take for 3 months. I may reduce the dose after 3 months I will see how things go. I did try a complex first with Bromelain in it but it gave me acid reflux. I seem to be getting good results without bromelain, just with adding in the vitamin C and zinc.

So after 2 weeks of Querecitin with vit C and zinc, at week 16 my crash eased a very small amount. Then at week 20 post 2nd AZ jab I had a more significant ease of symptoms – after adding in CoQ10 300mg daily and being on 1500mg quercetin for 3 weeks. I am hoping this is the formula to fight whatever this crash is – reactivation of a virus (likely EBV) or an immune system storm.

It would be good to recover because a) it’s been really hard to be so unwell and b) I am very nervous of a covid booster. I already decided to delay or not have my flu jab this year because I scared my system can’t take it. I did a lot of reading and mainstream advice is it likely won’t do any harm but ME specialist specific advice is yes it might cause relapse or crash in majority of patients.

B12 Self Injecting
Other new stuff I’ve added in this last year as I mentioned before is self injecting with B12 which I am doing every other day with daily folic acid 5mg. Lots of great support groups of FB if you want to try self injecting. I was delighted that my ME Specialist asked my GP to try me on B12 injections. Not because the GP will do it (they almost certainly won’t) but because I had already been doing it myself for since March 2021. Hurrah! I am injecting more frequently than he recommends because I get a return of anxiety if I go longer and because it gives me a boost of energy. He says it is a great free radical scavenger which would I think explain why I burn through it quicker than someone with pernicious anemia.

PEA (Palmitoylethanolamide) & Vulvodynia
I also started PEA (Palmitoylethanolamide) in October 2020 and that has been a godsend for my Vulvodynia. The Vulvodynia Specialist had recommended increasing amitriptyline and trying Gabapentin, along with daily washing with emollient and moisturising/protecting the skin with emollient (Doublebase Gel the only thing that worked for me). I managed to increase my amitriptyline by 10mg to 40mg daily but anymore gave me crushing headaches. I tried twice and was good for nothing both times. That increase to 40mg, with the emollient regime, dropped the impact of daily life score from a 9/10 to a 5/10. I didn’t want to go on Gabapentin unless I had no other choice, just because it can be a difficult drug for so many. So first I thought I’d try PEA.

I had tried lots of different supplements for anxiety and many of them are also effective for nerve pain. But they hadn’t worked for me on the nerve pain.

PEA was a game changer though. I take 1800mg daily (600mg in the morning and 1200mg in the evening) and it’s taken my vulvodynia down to a 1/10 day to day. If I go out, get overheated, have a flare – it can easily rise to a 4/10, but eases very quickly now. Mainly most days I have no tingling, itching or pain. The skin is still very sensitive to sharp or pointed touch but I do all the usual management stuff like loose cotton clothing, keeping cool, changing clothes if I get sweaty, moisturising throughout the day with a flare. I still use Zerobase gel to wash that area but have switched to using Weleda White Mallow lotion most of the time to moisturise morning and night. It’s less heavy, less sticky, less marking in clothes and does the job brilliantly with no reactions.

Current ME, POTS and associated treatment

Medication

  • Amitriptyline 40mg daily
  • Mestinon 60mg+30mg daily
  • Ivabradine 5mg twice daily

Over The Counter Medication

  • H1 blocker: Cetirizine 10mg twice daily (or Chlorphenamine if allergy needs it)

Vitamins & Supplements

  • Evening Primrose Oil 1000mg daily
  • Omega 3 Fish Oil 1000mg daily
  • Vitamin D3 4000iu daily
  • Probiotic Mix daily
  • Menopace Original daily
  • Magnesium Malate 400mg elemental daily
  • Inositol 500mg (for anxiety)
  • PEA (Palmitoylethanolamide – for vulvodynia) 1800mg daily
  • B12 1000mg self inject every other day
  • Folic Acid 5mg daily
  • Vitamin C liposomal 1000mg daily
  • Zinc 15mg daily
  • Quercetin 1500mg daily
  • CoQ10 300mg daily

  • Vitamin E 400iu as needed (for breast pain from fibroadenoma)
  • D-Mannose 500mg as needed (for urinary urgency/problems)

I’m also taking HRT which has fixed 80% of my anxiety.

To Try – Hit List
I have a hit list of possibilities to try and regain function and even to put my ME into remission if I could. I love, love, love, having new options I can explore in the future (or tomorrow!). It helps me maintain hope.

My private ME Specialist asked the GP to prescribe famotidine and Nalcrom (Sodium cromoglicate). I think it unlikely they will. I need to prepare some arguments before I ask the GP and also decide if I want to take them as they are not without side effects.

(By the way, I discovered on my GP medical record that the practice declined even investigating prescribing LDN partially due to an assumption it would be both costly and difficult to obtain. I could have gone in prepared with supplier and costings if I had known this might be a barrier. Now I know I will be more prepared.)


Here’s what’s on my own Hit List at the moment:

– VTNS vagus tens
– Allicin (for candida)
– Increase LDN dosage
– increase mestinon to 60mg in evening
– pregnenolone
– l-lysine
– fisetin
– inosine (had a kidney stone scare last time)
– sea buckthorn

– Bile salts for weight loss/fat processing
– Astragalus for EBV

– Ablify
– H1 or H2 blocker

Update or Rather Ugh-date

Can I update on the last 3 years plus the gaps inbetween previous posts? Not quickly. In short first I felt I had nothing left to say (which I no longer think is true) and second I fell into a benefits claiming dread fuelled even more by crippling anxiety.

The anxiety has been helped massively by HRT. It was like someone had flicked a switch the difference was so significant. More on that another day. I also pursued private counselling after my last PIP review left me in pieces, broken down and often close to suicidal. I’ve been counselled over Zoom with a someone experienced with chronic health conditions and benefits awfulness.

I’ve lived in fear of my data being scraped and used against me on my benefits claims. I still do live in dread but the balance has tipped into angry and injustice, away from destroyed and invalidated. So I’ve been very guarded about what I say online even amongst family and friends. Let me be clear the fear is still very real and not an anxiety thing – getting free from the majority of the anxiety has allowed me to live anyway and take consequences as they come, hopefully.

Also worries me that family will find and read this particular blog as it’s honest about the realities and my feelings. It’s hard to be so open with things that are so painful and which can cause others to worry about me. Also managing their worry on top of managing my own is hard.

But I figure if They ever do scrape my data then they can scrape these parts too! Or I can demonstrate with this some of the reality behind the “normal” presentations on social media.

I’ve been trying to work on a plan to earn a modest amount of income doing something manageable & engaging for myself as it’s going to become the major part of my life. The plan was to get free from benefits because I can no longer cope with the trauma, game playing, insults, degradation & limitations placed on me by that process. It doesn’t end with the reviews or the applications – it is constantly a threat. So I had to find a way to be free of Their influence.

I know that is exactly what They want. I don’t want to play into Their hands. But I am not sure I can survive another review like the last one, or have my money reduced enough to make things difficult financially but not enough to be seen as able by their minions who might spy on me and take isolated things as proof of bigger things.

I started making art again. I started reading up on self employment and marketing through social media. I started posting publicly again, finding my voice and showing my work. All very scary because I am showing what I can do. I present on my art social media as producing work and engaging with people. It comes at great cost. What I am not presenting is my illness, my symptoms, my suffering, my difficulties.

My symptoms that were pretty stable have risen back up. I have neck gland pain back for the first time in a long time. This is a sign to me that my body is very taxed and my ME is worse. I’m so lucky I have been able to get on Mestinon which has had an impact on my fatigue at rest. I’ve been more comfortable and it’s allowed me to get out of bed when I fear I would otherwise have been bedbound. But now I am pushing myself to get this plan in action I am back to struggling to get out of bed. Self care tasks have slipped even more. Social contact has dropped. Outings and visits are almost non existant and pandemic has proven useful in some regards!

I try to pace this push. Not everything needs to happen at once. I am not registered self employed yet and am holding off on earning anything until I am really ready and have figured out all the record keeping, data protection, insurance, etc.

This is not a huge amount to achieve. Except to a moderate/severe PWME it really is. I’ve started taking regular lie downs in the afternoon which is just never been part of my day except on holidays, visits away and recovery from one off exertions like appointments. It took a long time to accept it and I am still struggling and resisting.

I’ve started B12 self injections with folate supplementing to try and gain any advantage and hopefully to heal some of my systems and nerve pain. With my husband working from home due to pandemic I can stay in bed sitting for longer which helps. And following my 2nd AZ jab I spent a week in bed which is unheard of since I first got ill in 2006/7.


I’m on a list to see Dr Weir to get a formal and informed diagnosis of my ME. This is about evidence for benefits, as I am now starting to feel I can try to fight again next year when my review is probably due. But it also about belief in my own diagnosis. I’ve only ever been diagnosed by distracted GP’s and have had maybe 2 or 3 proper consults about ME, which was mainly me trying to tell them how shit things are in a short amount of time. And failing I think.

I realised recently when I say to family “I haven’t had a bath/shower for 2 weeks” they think well I’ve only had one or two. They think literally. When what I am saying is “I haven’t been clean, had a wash, washed my face for 2 weeks. I’ve been putting deodorant over deodorant for 2 weeks. The skin on my face is peeling because I’ve not washed it for 2 weeks. I have such small margins that even this small act of feeling human and presentable isn’t possible. I’ve made some small pieces of art and posted on social media but I haven’t made a cup of tea for myself or filled a glass of water for myself. I have to go to bed early to recover from the effort of going to bed before I can go to sleep. I am living a scant basic life here and the bits that are filled are really effin hard. And I’ve not had a shower for 2 weeks.”

It’s too massive to comprehend without spelling it out and spelling it out is too shocking.

So yes I hope to see Dr Weir, get a formal diagnosis and if possible a letter indicating the level of function I have and how that fits with my illness.

I thought the POTS diagnosis would do some of this heavy lifting for me but apparently not really. It’s as wilfully misunderstood as the rest of it.

I have to stop, my head is starting to thump from the thinking and emotion and physical act of typing. One stream of conciousness blog = feeling like crud and needing to rest.

Supplements for Nerve Pain

Here’s some of the findings from my research into supplements which may help with nerve pain and small fiber neuropathy. Some of the results are based on diabetic neuropathic pain but since my nerve damage pain (from surgery) and my allodynia have responded to one of those already (Alpha Lipoic Acid) it seems worth exploring others. I’m also experiencing anxiety as a new symptom so have paid particular note to that and things like brain chemistry – this is not extensive research and doesn’t cover every aspect.

Some of the information given such as dosage is conflicting. I’m just recording what I’ve found through research and there isn’t always a clear answer. Sorry I didn’t have the energy to link to all the sources for the info I’ve noted.

Updated 24th March 2018

For Nerve Pain:

Alpha Lipoic Acid

Inositol

Acetyl-l-carnitine

L-Theanine

D-L-Phenylaninine

Palmitoylethanolamide / PEA

L-Tryptophan

Resveratrol

Passion Flower / Passiflora

NAC or N-acetylcysteine

Turmeric / Curcumin

Quercetin

Also important for nerve repair and function:

Magnesium

Omega 3

GLA / Gamma-linolenic acid

Vitamin D

Vitamin B12

Thiamine B1 or Benfotiamine

Vitamin B6

CoQ10 (CoEnzyme Q10)

Alpha Lipoic Acid

Good for:

Nerve pain, allodynia, weight loss, diabetes, anxiety, dementia, healing wounds, migraines

Action:

Antioxidant that kills free radicals.

Alpha-Lipoic Acid has been shown to boost acetylcholine (ACh).

May increase nerve regeneration rates secondary to nervous system injury.
The combined robust antioxidant, neuroprotective and especially metabolic actions facilitate strong effect on cognition, memory and delaying mental fatigue.

Improves the function and conduction of neurons in diabetes. Improves the flow of blood to the nerves allowing them to use energy effectively.
Potent antioxidants for biological reactions taking place in the mitochondria of our cells.

Regulating blood sugar and insulin. Improves lipid profiles (cholesterol, triglycerides, and high/low density lipoproteins) and reduces plaque formation in arteries.

Side effects/Risks:

Might get a rash. In humans, doses of 1800mg/day and 2400mg/day failed to have any side effects over a 6-7 month period.
Nausea (deemed minor and related to appetite suppression) and an itching sensation of the skin associated with higher (1,200-1,800mg) doses.
Toxicity at 3-5g of ALA a day inducing mineral deficiencies.
People at risk for thiamine deficiency should take a thiamine supplement (particularly heavy drinkers).
People with diabetes should be careful to check their blood sugar levels because alpha-lipoic acid might lower blood sugar.

Contraindicated with chemotherapy.
May interfere with thyroid medications (can affect the conversion of T4 into T3).

Increased risk of developing (very rare) IAS (insulin autoimmune syndrome) resulting in low blood sugar (hypoglycemia) in individuals with a specific genetic variation – hypoglycemia resolved once the alpha lipoic acid was stopped.

Symptoms of high acetylcholine – ACh can act like a stimulant by releasing norepinephrine (NE) and dopamine (DA).  However, those brain chemicals are used up (depleted) in the process; and a deficiency can occur. Too much ACh relative to other brain chemicals such as serotonin (SE), NE, and DA has an adverse effect on brain function. This is because in larger quantities ACh acts like an inhibitory neurotransmitter, causing increased nervous system inhibition (depression). Important to remember is that, in general, as ACh levels go up in the brain, the levels of the other brain transmitters go down. In terms of mood, the combination of higher ACh and NE, together with lower SE, produces anxiety, emotional lability, irritability, anger, aggressiveness, negative rumination, impatience, and impulsiveness (among other things).

Dosage:

Between 100mg to 600mg per day for its antioxidant benefits.
Neuropathic pain 600mg or 1200 mg daily.
For diabetes or bodybuilding may benefit from higher doses up to 1200mg. High doses should be split and taken throughout the day.

One trial demonstrated at doses of 600mg 3 times daily for a 3 week period led to very significant improvements in neuropathic symptoms. Another trial found that a dose of just 600 mg a day taken for 4 years improved symptoms and slowed down the progression of neuropathy.

Inositol

Good for:

Nerve pain, anxiety, panic, cholesterol, weight loss, PCOS, OCD

Action:

Works in the nerves involved with cellular signaling. Mediates 5-HT (serotonin) activation within nerve cells.

Serotonin, Dopamine, Norepinephrine, and Acetylcholine are primary messengers, transmit messages from one neuron to receptors on another neuron but rely on secondary messengers to complete the signal and relay information within the cells. Inositol is one of the key secondary messengers needed for successful signaling. Inositol, Dopamine, and Serotonin work together to maintain consistent hormonal balances within the brain.

Inositol helps boost serotonin and dopamine receptor density. Improving the effectiveness of serotonin, GABA, glutamate and dopamine neurotransmitters in your brain.

It increases Cholinergic as well as GABAergic activity.

May enhance natural energy, especially when taken just before any activity that will subject the body and mind to stress.

Some of its effects include healthy hair and controlling estrogen levels

Side Effects/Risks:

Water soluble so excess expelled. Minimal side effects. No withdrawal.
Possibly agitation, apathy, brain fog, decreased self-awareness, diarrhea, libido reduction, and sweating.
Can cause nausea, tiredness, headache, and dizziness.
Very safe supplement to ingest, and all side-effects associated with myo-inositol are merely mild gastrointestinal distress from high doses.

Most common side effects are loose stools at the beginning of supplementation, which resolve as your body gets used to inositol. Other reported side effects are nausea, headaches, fatigue and dizziness. Some people also notice increased sweating that usually resolves with time.

Dosage:

500-1,000 mg a day for nerve pain

In the range of 200-4,000mg once daily before breakfast; the higher dose seems to be used more often and seems more effective. Neurological usage of inositol tends to require higher doses, and while antidepressant effects have been noted as low as 6g at times the standard dose is between 14-18g daily

PCOS 4 g per day (divided into 2 grams twice daily)

Anxiety/Panic between 12 grams and 18 grams per day (build slowly)
Depression 12 grams daily. This dose has been shown to improve the symptoms of depression after 4 weeks.

Acetyl-l-carnitine

Good for:

Nerve pain, nerve damage, depression, weight loss, blood sugar, muscle disorder, heart conditions, cholesterol, hyperthyroidism

Action:

An amino acid that improves diabetic neuropathy. Supplementing with carnitine might help increase insulin resistance, allow the cells to utilize glucose effectively and boost nerve regeneration.

Alleviates symptoms, particularly pain, and improves nerve fiber regeneration and vibration perception in patients with established diabetic neuropathy.
It works to regenerate myelin sheathing of nerves, produce new nerve fibers, and improve the function of important nerve connections to organs.

Glutamate is a neurotransmitter that is significantly involved in pain transmission including neuropathic pain.  Glutamate receptors are proteins that bind to glutamate for supporting its function. These receptors when activated relieve neuropathic and inflammatory pain. Acetyl-l- carnitine activates with these glutamate receptors to relieve neuropathic pain.

Acetyl L-carnitine acts as an antioxidant. Able to cross the blood-brain barrier.
Supports acetylcholine and dopamine levels. Increases norepinephrine in the hippocampus and serotonin in the cortex. Supporting norepinephrine and serotonin in the brain can help with depressive symptoms as well as cognitive deficits.May reduce amounts of GABA and increase myo-inositol . May alter monoamine neurotransmitter levels.

Side Effects / Risks:

Diarrhea, nausea, stomach pain, vomiting. Headaches. Over-stimulation. Trouble sleeping. Raise blood pressure. Lower blood sugar and higher triglycerides (in people with diabetes). Psychosis in people with bipolar disorder.

May increase the risk of seizures in those with epilepsy.

Warnings for people with hypothyroidismperipheral vascular disease, high blood pressure, liver cirrhosis, alcoholism, diabetes, kidney failure, digestive problems, risk factors for mental illness, hepatitis C (fatigue may worsen).

Warning with blood-thinning drugs, beta-blockers, calcium-channel blockers. May interact with drugs or supplements that lower blood sugar. It may affect how your body breaks down certain drugs and supplements.

Dosage:

500 mg or 1,000 mg three times daily

As per the research studies, the beneficial dose of acetyl-L-carnitine is 1000-2000mg daily. Start with a small dose (500mg daily) and scale up gradually; a dose of 1000mg -1500mg per day should help.

L-Theanine

Good for:

Nerve Pain, Anxiety, Sleep, lowering blood pressure, cholesterol

Action:

Naturally occurring amino acids. L-Theanine increases brain serotonin, dopamine, and GABA levels.

A mild stimulant for glutamate receptors and keeps glutamate from full activation, which acts to tame excitotoxicity.

Increases alpha brain wave activity, especially for those people who suffered from prior anxiety. Brain waves are actually smoothed out—but not flattened out.

Prevents the abrupt rise in blood pressure that some people experience under stress.

Unlike prescription anti-anxiety drugs, L-theanine relieves stress without causing drowsiness or impairing motor behavior. In fact, studies show it improves alertness and attention.

Theanine may boost the activity of T cells that protect against infection and tumors.

Side Effects/Risks:

More likely to occur at higher doses. Headaches. Dizziness. Reduction of appetite. Lowering blood pressure. Slight gastrointestinal discomfort.  Nausea.

Very high doses of L-Theanine may result in a fairly strong sedative effect.

As it  it indirectly interacts with GABA receptors you may want to avoid using a Theanine GABA combination.

While L-theanine also has the potential to increase serotonin levels in the brain, it has occasionally been shown to decrease them as well.

Contraindicated in chemotherapy.

Dosage:

For neuropathy 200 mg three times a day, taken 30 minutes before meals. This can be increased to 400 mg three times a day if needed.
For anxiety 200mg two to three times daily

D-L-Phenylaninine

Good for:

Chronic Pain, Depression, Vitiligo, (ADHD), Parkinson’s disease

Action:

DL-Phenylalanine is a combination of D-Phenylalanine and L-Phenylalanine, two different forms of Phenylalanine. D-Phenylalanine is a laboratory-made substance that has been studied for potential pain-relief effects. It has great effects and is especially useful in supporting your natural pain-relief system. L-Phenylalanine is an essential amino acid and is required for your body to function correctly. L-Phenylalanine deficiency is linked to lowered mood and feelings of stress. Higher doses of L-Phenylalanine may have the potential to improve your mood and focus.

DL-phenylalanine appears to improve chronic pain symptoms through up-regulation of your endogenous analgesia system. Your EAS is a neural system that suppresses nerve transmissions in your pain pathways. Thus, the EAS is responsible for reducing pain sensations.

Inhibits the breakdown of endorphins. Endorphins are pain-relieving compounds that originate within your body.

Phenylalanine is needed to produce certain neurotransmitters, including dopamine and serotonin.

Research has indicated that migraine, joint pains, neuralgia and even postoperative pain respond to DLPA, and it has been reported to reduce inflammation. DLPA does not deaden normal sensation even when taken for a lengthy period.

Side Effects/Risks:

Very well tolerated and for the most part side effects free. DL-phenylalanine side effects include nausea, headaches and heartburn. Both DLPA and l-phenylalanine can cause migraines or slightly increase blood pressure.

Some common side effects include anxiety, jitteriness, or hyperactivity.

Rare side effects can include itching, mouth tingling, or swelling of the hands of the feet (these are rare).

Can worsen tardive dyskinesia — involuntary movements — if you are currently taking anti-psychotic medication. You should not take DL-phenylalanine if you are on anti-psychotic medication. DL-phenylalanine may interact with a class of antidepressants known as monoamine oxidase inhibitors.

Contraindicated for Levodopa used for Parkinson’s disease, MAOIs, medications for mental conditions might cause jerky muscle movements.

Dosage:

The most common range is 750mg to 3,000 mg daily. Studies have shown highest efficacy for depression utilized doses of 50mg to 200 mg per day.

The dose of DLPA needed may vary from person to person, and is generally determined by starting with perhaps 1,000 mg daily for two weeks and then gradually increasing to a level that provides relief. If 3,000 mg per day doesn’t work after a month’s time, it probably will not work at all. The good news is that persons reporting pain relief will generally be able to LOWER their dose gradually and will often be able to maintain pain-free status with less DLPA than before.

Palmitoyalethanolamide aka PEA

(Not to be confused with Phenylethylamine which is also known as PEA)

Good for:

Chronic Pain, Nerve Pain, Joint Pain, Migraine, Fibromyalgia, Chronic Regional Pain Syndrome (CRPS), Small Fiber Neuropathy,

Action:

Naturally occurs in the body. It stops pain and inflammation, protects the heart, and improves brain function. Pain suppressant and anti-inflammatory. Clinical trials have found that the compound’s action performs numerous biological functions related to chronic pain.

It has been found to have anti-inflammatory, anti-nociceptive, neuroprotective, and anticonvulsant properties.

Binds to a receptor responsible for regulating the gene networks connected to the control of pain.

While PEA is not technically an endocannabinoid, it often gets grouped into the family; particularly with anandamide, because PEA operates via similar metabolic and synthetic pathways.

PEA is the key to suppressing overactive mast cells. Mast cells release inflammatory histamine and cytokines into the body.

The action mechanism of PEA is strengthened by complementary action mechanisms of the selected B vitamins.

Studies with mice using PEA found less injury to heart tissue, decreased cell death, and lower levels of cytokines.

Side Effects/Risks:

To date, no drug interactions have been reported in the literature, nor any clinical relevant or dose-limiting side effect.

Rarely gastrointestinal upset and diarrhea with the sublingual preparation, probably due to the sorbitol in it. No side effects with PeaPure.

No adverse reactions with other commonly used pain relievers such as tramadol, pregabalin, gabapentin, amitriptyline, and duloxetine.

Dosage:

6 weeks with 600 mg tablets twice daily. Once 50% reductions in pain are seen reduces the dose to 300 mg twice daily.

or: CRPS: Start 3 x 400mg either over 3 doses or split into 2 in morning and 1 in evening. After some weeks you could increase to 6 x 400mg

The analgesic effects are build up day by day; most people notice the effects within 1 week, but sometimes 6-8 weeks is required, especially for chronic pain syndromes.

PeaPure:  It has been proved that taking 1 capsule of 400 mg 3 times a day during the first 2 months is a good starting dosage. PeaPure users usually notice an improvement during the first few weeks.  Only after two months, the effectiveness of PeaPure can be properly evaluated. From that moment on it will become clear whether it is worthwhile to continue to take PeaPure for a prolonged period of time. If, after 2 months, the desired effect has been achieved, the dosage can be reduced to 1 capsule of 400 mg 2 times a day.

Starting from 4 months you can consider:
–    to continue the dosage of 1 capsule 2 times a day
–    to reduce the dosage to 1 capsule 1 time a day
–    to stop taking PeaPure.

If the result decreases after reducing the dosage, it is advisable to increase the dosage again to 1 capsule 2 or 3 times a day.

or: General palmitoylethanolamide dosing guidelines are as follows:

  • Initial dose: 1200 mg per day, with or without food, for the first 6 weeks.
  • Maintenance dose: 600 mg per day, with or without food.

L-Tryptophan

Good for:

Anxiety, Insomnia, fibromyalgia, sugar/carb cravings, binge eating, migraines, PMS, dementia

Action:

The amino acid, L-tryptophan, carries information throughout the nervous system and promotes emotional calmness. Our bodies convert it to 5-HTP (5-hyrdoxytryptophan), and then to serotonin, melatonin, and vitamin B6 (nicotinamide).

Serotonin is an important neurotransmitter with a major role in sleep, pain, and appetite, and it affects conditions like depression and anxiety. It influences pain thresholds through interacting with other compounds involved in the sensation of pain, like substance P and endorphins.

Side Effects/Risks:

Drowsiness, agitation, nausea, dizziness, headache,  lightheadedness, loss of appetite and muscle tenderness, gut symptoms,

Between 1988-1999, an EMS outbreak prompted the FDA to recall and cease over-the-counter tryptophan supplements. However, this was because one company in Japan that made synthetic tryptophan altered their creation process, which caused the outbreak. After this was caught and fixed, the FDA lifted the ban in 2001

Contraindicated for MAOI, iproniazid, liver disease, kidney disease. Anti-cough drugs such as dihydrocodeine, noscapine, and dextromethorphan increased cough resistance.

Dosage:

  • for sleep disorders/insomnia: 1–2 grams taken at bedtime
  • for chronic pain or migraines: 2–4 grams per day in divided doses
  • for treating PMS or PMDD: 2–4 grams daily
  • for helping to alleviate depression or anxiety: 2–6 grams daily (it’s best to work with a doctor)
  • for lowering appetite and cravings: 0.5–2 grams daily

While the usual dosage of L-tryptophan is 500 mg, many people take more and supplement’s instructions recommend 3 pills before bedtime.

Less than 8 grams per day for 8 weeks shouldn’t produce any side effects.However, an upper limit for tryptophan supplementation is still uncertain

Resveratrol

Good for:

Nerve pain, allodynia, anxiety, cholesterol, lowering blood pressure, arthritis, diabetes or prediabetes

Action:

Suppresses currents along sodium channel for analgesic effect. Inhibits inflammation. Regulates levels of nerve growth factors and lowers oxidative stress.
Known to stimulate norepinephrine release at a moderate level. Resveratrol is also an MAO-Inhibitor and a serotonin agonist. As such, it may improve mood, reduce anxiety and even lead to better sleep quality. Promote better circulation.

Side Effects/Risks:

At high doses, it may cause gastric side effects such as nausea and diarrhoea. One study has noted side effects such as a headache, skin rash and common cold-like symptoms.
Caution in bleeding disorders.

Blocks some enzymes that help clear certain compounds from the body. That means some medications could build up to unsafe levels. These include certain blood pressure medications, anxiety meds and immunosuppressants.

In some situations, high doses of resveratrol boost the activity of estrogen, in others they block estrogen. That makes resveratrol supplements iffy for women with cancer of the breast, ovary, uterus, or other estrogen-sensitive tissue, those trying to become pregnant, or those taking an oral contraceptive.

Dosage:

500-1000mg daily of resveratrol has been evaluated in clinical studies.

Typically taken in about 250 to 500 milligrams/day dosages. It’s important to point out that this is generally lower than the amounts that have been shown to be beneficial in studies, but it’s not clear if taking very high doses is safe.

Passion Flower / Passiflora

Good For:

Nerve pain, allodynia, anxiety, Fibromyalgia, sleep, Parkinsons, lowering blood pressure, menopause (hot flashes/night sweats)

Action:

Increases levels of gamma aminobutyric acid (GABA) in the brain. Contains compounds called beta-carboline harmala alkaloids which act as natural MAO (monoamine oxidase) inhibitors. MAO inhibitors aid in the metabolism of feel-good neurotransmitters serotonin and norephinephrine.
Shown to have anti-inflammatory, anticonvulsant and antispasmodic properties.

Side Effects/Risks:

Drowsiness. Dizziness, confusion, irregular muscle action and coordination, altered consciousness, and inflamed blood vessels. There has also been a report of nausea, vomiting.
More serious side effects include irregular heartbeat, loss of coordination and liver damage
Passionflower can affect the central nervous system. It might increase the effects of anesthesia and other medications on the brain during and after surgery.
Contraindicated with sedative medications, blood thinners, MAOs and blood pressure medication

Dosage:

The capsules usually come in 200-400 mg doses taken two to three times a day.
Between 250 mg to 2,000 mg of the raw herb three times daily.

For anxiety 200-300 mg of a standardized extract, twice a day.

NAC or N-acetylcysteine

Good for:

Nerve pain, cholesterol, CRPSAction:
Increase glutathione synthesis in the liver. Fights oxidative stress. Reduces inflammation.  Regulates neurotransmitter levels. Normalises mitochondrial function, which can repair and restore nerve function in case of nerve damage.

Side Effects/Risks:

Adverse reactions are normally limited to diarrhea, headache, nausea and/or vomiting
Contraindicated kidney stones and stomach ulcer. Contraindicated with nitroglycerin.

Warning for bleeding disorders.

Dosage:

About 500 mg to 1800 mg per day . Two human studies have used 1200mg N-acetylcysteine 1-2 times a day for peripheral neuropathy and neuropathic pain treatment. High dose NAC can have side effects; the dose range of 2-2.4g/day is safe and effective in most conditions. Start with a small dose and increase gradually to identify a dose that suits you.

Most research also indicates that it is essential to take 500 mg of Vitamin C to prevent kidney stones.

Turmeric / Curcumin

Good for:

Allodynia, nerve pain, anxiety, depression, arthritis, IBS

Action:

Antinociceptive pain blocking in neurons. Anti-inflammatory and antioxidant properties. Epigenetic agent having a positive impact on gene expression primarily by influencing methylation.
Elevates neurotransmitters such as serotonin, while lowering stress hormones, such as cortisol.

Side Effects/Risks:

Some research suggests the potential for liver toxicity. Possible side effects possible (at high doses) is gastric discomfort such as nausea, diarrhoea, constipation, bloating .
High in oxalates which is bad for kidney stones.
Warning for bleeding disorders.

Hyperactive gallbladder contractions.

Increased liver function tests.

Interacts with drug metabolising enzymes; please maintain a 3-4 hour gap between taking curcumin and any medication.

Dosage:

300-400mg 2-3 times a day for standardized 95% curcumin extract.
Neuropathy 500-1000mg of standardised 95% curcumin. Start with small doses such as 500mg per day for a week and then scale up gradually every week. Doses up to 8g have been found to be safe but a dose of 2g per day should suffice for severe cases.

Quercetin

Good for:

Nerve pain, allodynia, inflammation, allergies, cholesterol, heart disease, lowering blood pressure, prostrate

Action:

Fights oxidative stress. Inhibits inflammation. Can regulate immune responses and serve as a natural immunosuppressant in some conditions.
Can help in regeneration of nerve cells and promote neurite growth.
Civi et al. have found quercetin to be more effective than gabapentin and morphine in relieving nerve pain in a model of nerve constriction injury.

Side effects/risks:

Can cause headache and tingling of the arms and legs.

Please maintain a 3-4 hour gap between taking quercetin and any medications.
It may interact with certain medications: antibiotics, felodipine, quinolones, cisplatin, doxorubicin, digoxin, cyclosporine, corticosteroids and blood thinners.
Doses higher than 1g may cause kidney toxicity. It is advisable to take periodic breaks when taking quercetin supplements.

Dosage:

Depending on the severity of symptoms, 500-1000mg of quercetin for neuropathy.

Start with smallest dose available (250 or 500mg) and scale up gradually over weeks. Doses higher than 1000mg are not recommended. Cycling the dose or taking a break from quercetin intermittently is advised.
Quercetin supplements can be taken with other flavonoids such as curcumin, resveratrol or green tea catechins to get the benefits at a reduced dose.

 

Also Useful…

Magnesium
involved in muscle contraction, nerve conduction and muscle relaxation. May help relieve nerve pain by blocking certain pain receptors and acting as an anti-inflammatory in order to regulate pain.

Omega 3
building blocks of nerve tissue and are useful at high doses (6 grams daily) to reduce nerve inflammation.

GLA / Gamma-linolenic acid
omega-6 oil that has been studied and found to protect nerves from diabetes-induced injury high in evening primrose, borage and black currant oils. Anti-inflammatory

Vitamin D
can help to reduce the pain and inflammation associated with neuropathy, along with actually repairing the nerves and myelin sheath. Enhances the absorption of important minerals. Held to be integral to the healthy production and protection of neurotransmitters and other nervous system tissues.

Thiamine B1 or Benfotiamine
benfotiamine modulates the pathways that cause neuropathy. It regulates cellular damage caused by high levels of glucose and prevents vascular problems that also contribute to neuropathy. Several trials have demonstrated that benfotiamine taken at doses between 300 and 600 mg a day can significantly relieve the symptoms of diabetic neuropathy. Benfotiamine is often prescribed in Germany as a treatment for sciatica and other neuropathic pain complaints.

Vitamin B6
Benefits nerve function and synthesizes neurotransmitters like serotonin and dopamine

Vitamin B12
Vitamin B12 can extenuate nerve damage caused by neuropathy by activating a chemical signal, which helps nerves to regenerate. Restores blood flow which produces myelin synthesis, a fatty substance that protects the nerve fibers. Combinations of Vitamin B12 and 6 (methylcobalmin, folic acid and pyridoxal) have been found to improve symptoms and maintain the health of nerves in the extremities. Deficiency in B12 can contribute to peripheral neuropathy.

CoQ10 (CoEnzyme Q10)
plays an important role in addressing mitochondrial dysfunction, a condition that may result in nerve damage and pain. This supplement is also effective at neutralizing the threat of free radicals in the body.

Calcium
needed for the transmission of nerve signals between the brain and body

Zinc
essential for normal nerve function

 

Nerve Pain

I continue to have pain at 3 of the sites of my keyhole surgery when my gallbladder was removed last August. My GP referred me to a gastro to double check nothing had been missed.

His theories were it could be:

1. Bile Salt Malabsorption causing new pain

2. An increase in my IBS symptoms

3. A stone remaining after surgery (we agreed the symptoms do not really fit for this to be it)

4. Nerve pain from the surgery

He’s sending me for a SeHCAT scan to check for Bile Salt Malabsorption with the offer of treatment if it is. I had already suspected I had a mild case of this as my motions are considerably looser than they were before. The treatment could be tricky though as I am inclined towards constipation. Anyway that test is happening soon.

We’ve established that food doesn’t influence the pain so I am very sceptical that anything except option 4 nerve pain is the diagnosis. It isn’t about the surgeon doing anything wrong particularly. It’s easy to stretch and damage nerves. And as someone whose nervous system was already heightened it’s a big risk factor for surgery. Something I didn’t know. But the surgery was absolutely necessary as my gallbladder was chronically inflammed and full of stones and I was very ill before I had it out.

Meanwhile I’ve been trying to find a supplement treatment for the nerve pain. I tried upping my dose of amitriptyline from 30mg to 40mg but the side effects scared me. I was scared of losing the benefit 30mg gave me so I dropped back straight away.

The pain is almost constant but varies from point to point. Some days just one area is hurting, some days they all join in. It’s wearing and depressing. I’m upset that my gastro’s letter to my GP minimises what is a very distressing condition for me by saying it doesn’t stop me doing things and inaccurately recording how it occurs. Sigh. Now that’s on my records forever. It’s always there, it moves around, it’s more intense some days, if I’m lucky I get a couple of hours off or where I can ignore it, then it’s always there again.

I had great success with daily 600mg of Alpha Lipoic Acid which after a week relieved the pain almost fully. It also helped massively with the allodynia of my waist which has meant I can’t wear anything touching my waist since 2016.  But I also had the worst anxiety and panic attacks I’ve ever had about 2-3 weeks into taking Lipoic Acid. I can’t help but wonder if the two are not connected. I stopped taking the Lipoic Acid and although the anxiety re-occurred without it my anxiety wasn’t as strong.

I’m now trying a lower dose to see if I can get the pain killing without increasing anxiety – *if* the two are even connected! It may be perimenopause and hormone inbalances. I tried 100mg, 200mg and am now at 300mg which makes some of the worst pain more bearable but it’s still ever present. It also helps a little with the waist pain. But I have had some panic symptoms since I upped the dose which may be connected.

I hate having to try and muddle through and now know what is causing what. If I seek help from my GP the answer would be straight forward to try me on Duloxetine as that could address both anxiety and pain and also help with my low level depression. But I am worried about the impact of taking such as a drug as it interacts with so many other medications and can be terrible to withdraw from. I had an awful time with withdrawal symptoms from Effexor another SNRI years ago before ME.

It would save me from 2nd guessing and I’d have someone to take some responsibility with me. But accessing GP appointments is very challenging for me and I find appointments and the whole system quite traumatic because of so many bad past experiences. I’m not confident I’d have an actively interested GP or even get to see the same one twice. Also they tell you to suck up side effects for up to a month which can include anxiety, headaches, pain. So on balance I feel I should continue to search for a less aggressive and fixed solution. And keep that option as a fall back.

I have other options I can explore in the supplements – inositol, l-carnitine, tumeric. It’s having the patience and time to experiment with each.

There is a cost implication in using supplements instead of prescriptions. But I control what I take and when. I can stop or adjust dosage as needs be. It’s just a long process to find the right fit and (as anxiety will do) I keep worrying if it’s the right course. That it would be easier to trust a doctor and throw some brain altering prescription at it rather than experiment at doing the same on my own. Figuring it out takes a lot of energy and focus.

No easy answer here. Aside from live with the pain.

 

Woman Stuff

I have a suspicion that peri-menopause may be upon me but being on Cerazette (progestrone pill) it’s difficult to know for sure. I’ve been experiencing anxiety with some panic attacks in a pattern and manner that feels hormonal. It’s a bit like being a teenager again in terms of the presentation of mood swings. Also things in my downstairs area are … not quite right.

I had a routine smear last year which was incredibly painful because the nurse discovered (read banged into) a cervical polyp. A GP referral to hospital had that removed on the day all very quick and easy. But it did add to my feeling of doom that I’m lumbering into middle age and things are inevitably going awry.

I had a recurrence of vulva itching recently and had treated it as a skin condition. When I had this last year it turned out to be a consequence of the thrush cream I had used to treat what I thought was fungal. So the antifungals made me more itchy than ever. But thrush had triggered the initial itch.

I’ve had another bout of thrush, which reminded me that I feel I basically have it more or less most of the time internally as I’ve been older. But it doesn’t often spread to external so maybe it’s just my normal to be uncomfortable sometimes.  Anyway seemed to be thrush this time so I treated with a pill 5 days ago. But in my reading found that vaginal dryness can be a factor for recurring infections. I don’t really want to take long courses of anti-fungals (despite stocking up from an online pharmacy to do just that!) so I did some reading to see if I could redress the balance another way and try to see off recurring infection.

I’ve started taking ordinary probiotics and am due to start probiotics specific to redressing female areas when my delivery arrives. I’m looking to take Lactobacillus rhamnosus and Lactobacillus reuteri specifically. These are available from Optibac and Jarrow as special female formulas but are pricey. I found a similar product from Swanson which contains other helpful stuff too.

Probiotics for Women – Lactobacillus rhamnosus and Lactobacillus reuteri

I’m also going to try a vaginal moisturiser. I looked for ages for natural stuff when I had the vulva itching and have used both Badger Nappy Balm and Diprobase. But for internal I had struggled to find anything that was full of stuff some articles said to avoid. Then by accident I found Multi-Gyn Actigel which not only is supposed to help boost your natural secretions but also prevents and treats bacterial vaginosis.

So for now probiotics and actigel. Hopefully that will make things happier and more comfortable.

Dysautomnia – Hunt for Help

I am much more knowledgeable about dysautomnia than I was when I last pursued a diagnosis in 2011. I’ve been wanting to pursue it for a long time but screening for gallbladder surgery has brought things to a head. My pre-op and subsequent ECG showed sinus tachycardia (and my blood pressure was a concern too). I was worried, knowing that tachycardia is a norm for me, but being someone who is suggesting why that might be rather than having a diagnosis.

I raised concerns with the surgeon and asked my GP for a cardiology referral in an attempt to hurry things along.  My surgeon opted to wait for an opinion, or rather an OK from the cardiologist, suspending me from the surgery waiting list.

Stress and anxiety now mounting because I knew the chance of landing with a cardiologist who was even familiar with dysautomnia, let alone capable of diagnosis and treatment seemed slim. And then there was the timescale that seeing an NHS cardiologist and waiting for tests and follow up would take. I could see surgery delayed until summer or later meaning I’d pain, nausea and problems for over a year.

I’m so fortunate that a family member, seeing my distress and position, offered to pay for me to pursue a diagnosis, explanation and an OK for my surgeon privately and therefore quickly. I have to say I struggled a lot with the generosity of the offer, the implications of cost and my worth to be invested in. But that’s another post.

Yesterday I saw my selected autonomic specialist in Leicester. We ended up taking about an hour and a quarter of his time, covering my ME history as well as the suspected POTS. He was interested in my home 10 minute standing tests for POTS and kept my prepared info.

201703-active-stand-pic---w

He examined me thoroughly and perfromed a 3 minute active stand test.

He suspected I do not have classic POTS but that perhaps I have some mild dysautomnia. He wasn’t unduly worried about the history and stats I was giving him. But certainly there is sinus tachycardia which would benefit from treatment. The ECG showed sinus tachycardia and a weak pulse which strengthened his view that treatment could be beneficial.

He will ask my GP to prescribe Ivabradine, his preferred option, as it slows the heart without the side effect of tiredness that beta-blockers often come with. But as a 2nd option, if the GP is reluctant to prescribe Ivabradine (which is new, off licence and expensive) then he’s prescribed a beta-blocker. He also gave me the choice of Ivabradine privately but at about £60 a month it’s a very expensive option to self fund.

He’s asking for a NHS 24 hour urine collection test to exclude rare adrenal condition via my GP. And a thyroid test would be a good idea.

Once my heart rate is slowed I’ll be back for a private EKG to exclude any underlying physical problems. Then, after a follow up, referred back to the NHS in Leicester for autonomic testing, which may take time with waiting lists. But as he is addressing my immediate concern by writing to my surgeon giving the all clear to operate with his clinical findings, time I can afford.

The best thing was having an hour to talk to the consultant without pressure. It really did take that whole hour (and a bit!) to talk about everything and even then I had to cut short some of the ME stuff and steer him more towards OI stuff. We certainly got a lot out of it, not least being the first doctor to see my tachycardia and actually do something about it, namely treatment and further testing. It felt at times that he was being dismissive of my symptoms and stats, but I think after asking him that it was that he was framing my level of dysautomnia against the spectrum. Sort of reassuring me  not to be unduly worried if you like.

He’s not dismissing POTS totally because autonomic testing will show more anyway. My baseline HR was so high to start with (being in the doctors office and a bit anxious) that he felt the test couldn’t show POTS. Like my home tests I was raising less than 30bpm but going over 120bpm, but his opinion was that wasn’t a clear indication as my starting resting HR was so elevated. His opinion was that my BP rising on standing was a normal reaction.

I feel others specialists would interpret my results differently. He is an advocate of the 3 minute stand test, feeling that if an autonomic reaction is going to happen it happens quickly and anything more is something else I suppose. I’m not a huge fan of this approach, but it’s the specialist I’ve got so I have to work with that. And the specialist I’ve got is a huge improvement on the big fat zero I had before. And I am getting treatment which would be the same for POTS anyway so the end result is much the same. Trying to be relaxed and philosophical about it because that’s the reality I have to deal with.

 

 

 

 

 

 


CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via del.io.us
http://del.icio.us/rachelcreative/M.E.
New stuff is added all the time.