Why am I experiencing migraines, muscle twitching and generally feeling poo 💩?!

[janeroar]

Last year year this forum was incredibly helpful when I had a very scary patch of feeling dreadful. I nearly passed out in the middle of the night. Eventually I was diagnosed with vestibular migraine and haven’t felt myself since. I get some migraine symptoms like zig zagging in eye and tiredness but not headaches

Almost a year later I’m feeling a significant dip in my overall health. Main symptoms:

- Muscle twitches (this feels weird and scary)

- Tiredness/spaciness/really low energy

- Bad constipation

- Soggy brain functioning

- thirst even when drinking lots (have to drink about 5 litres a day)

- Sensitive bladder

- heart palpitations

- feeling anxious (not like me)

I take 100mcg/125mcg T4 alternate days and 12.5mcg T3

I was supplementing D3/k4, magnesium, zinc, ingennus b complex, selenium, NAC I stopped all vitamin supplements a month ago and had my bloods done this week at GP unfortunately the GP wasn’t allowed to test my T3. my TSH is always barely in reference range for the last 7 years so maybe why she didn’t test it

T4 18.1 (11.9-21.6) (Oct 17.9)

T3 5.2 (3.1-6.8) (Oct result only)

B12 730 (160-925) Oct 988 (supplementing then)

HbA1c levl 33 (20-41(consistent over last 3 years)

Folate 13.4 ( 2.9-50) Oct >20

Serum Iron 29 (11-36 ) ( Oct 44.8 Aug 27.1)

Total iron binding capacity 50.4 53-85 (Oct 50)

Serum Ferritin 46 40-250 ( Oct 43, Sept 39)

Transferrin Saturation 58.3 20-40. (Oct 89.6)

Sodium 132 (133-146) Oct 136, Aug 132

So the question is- is this an iron issue? you can see serum iron is low (but high last October) TIBC is low but Transferrin saturation is high. Ferritin only just in range. The GP said it could be haemochromatosis but because levels dropped she wouldn’t be able to refer me. I don’t understand though why other iron levels are low.

Sorry for the very long post and thank you for reading this far! Much gratitude. 🙏🏼

[SlowDragon Administrator]

Suggest you test TSH, Ft4 and Ft3 and vitamin D

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

you only need to stop vitamin B complex 5-7 days before test. All other supplements you can continue until day before test

[janeroar in reply to SlowDragon]

hi there. Thanks for your reply. As you can see I’ve tested those except t3 was from last October. I followed that protocol. I’ve been supplementing vitamin D. Hasn’t got low for years and been regularly tested.

Any thoughts on the iron results?

[SlowDragon Administrator]

Your iron panel tests are confusing

labtestsonline.org.uk/tests....

[janeroar in reply to SlowDragon]

Looks like iron deficiency? I eat decent amount of red meat and good green vegetables

[radd]

janeroar,

T/S is calculated by dividing serum iron by TIBC, then multiplying by 100 and rounding to nearest tenth of a decimal place, eg in your case

(29 divided by 50.4)100 = 58

Therefore, T/S is only a good indicator of how well iron is working when there is enough transferrin protein carriers. These drop and raise in line with serum iron as not only transport iron but act as another mechanism in addition to ferritin in preventing ‘free’ iron which is toxic. Therefore, you are iron deficient, but with both low transferrin and ferritin it would be tricky to supplement iron at this moment due to lack of capacity to keep iron ‘safe’.

Transferrin’s reduce with chronic inflammation in a condition known as anaemia of chronic disease. Therefore, if this were me I would be looking to raise transferrins by reducing chronic inflammation and eating an iron rich diet with lots of proteins that will encourage both iron and transferrin to raise gradually.

In heamochromatosis a classic presentation are raised ferritin and T/S. However, there are other genetic mutations such as on the MTHFR gene that means ferritin can be difficult to raise even when iron levels are sufficient.

Although a few months back all your other stats are good which indicates it is an iron problem. However, another angle might be to look at sex hormones if you haven't already as addressing imbalances will help make thyroid hormones work better that might increase improved iron function.

[radd in reply to radd]

janeroar

Also I’m interested with your vestibular migraine diagnosis.

In 2021 I suffered a TIA (no blood clot or bleed) resulting in slight vision & hearing loss. Since then I have suffered a several episodes of brightly coloured blues/purples symmetrical zig-zag vision. There are never any accompanying headaches but my head feels fragile and I’m always tired after.

My husband is always nagging me to report it to my GP. How did they diagnose you with vestibular migraine and have you been offered any treatment?

[Star13 in reply to radd]

Hi radd

As you probably know there are many versions of "migraine" and many doctors are good at clumping them into one when actually they are distinct entities. That's why there are now headache clinics (although very scattered and hard to access) where headache doctors who specialise in just this subject can differentiate which particular type a person has and can treat appropriately.

I have been lucky enough to be under one such place and have three different kinds of migraine ( one which is a primary headache) and all need to be treated differently. About three years ago I noticed different symptoms, I could not scroll down on my phone or computer without feeling car sick, I had balance issues and I felt generally as if my head was achy and thick if that makes sense? These symptoms would last all day and clear when I slept but be back as soon as I looked at my phone in the morning. I was told I had vestibular migraine and put on a new drug which helped a lot although had other side effects.

I would urge you to report your episodes to your GP as they sound like "migraines" but migraines in someone who previously hasn't had them can be a warning when the brain does not like sludgy blood and given you already have had a TIA it might mean you may need help to thin your blood a bit. So make that appointment with your GP.

[radd in reply to Star13]

Oh that sounds very debilitating. Poor you.

My weird visual occurrences are seldom but it's probably sensible to have the episodes logged on my records in case they increase.

I can't take blood thinners. I tried after my TIA as was put prescribed them automatically but I was bleeding everywhere when small cuts wouldn't heal, and when my clotting factors were checked during immediate post stroke labs, they were fine. Therefore, I stopped the tablets but I'll speak to my GP.

[janeroar in reply to radd]

hi Radd

I went to see a neurologist. A TIA was ruled out but she said my symptoms were typical of vestibular migraine though at that time I was only getting tingling in my limbs. Now its muscle twitching / spasms which feel very disconcerting when they happen.

I’ve been offered beta blockers and also some other meds that have horrible side effects. I don’t want to go on either.

I’ve found a great breathing app called the Breathing Zone. It helps to slow my nervous system down. Think it’s been in overdrive, maybe triggered by Covid but probably working too hard.

[Sparklingsunshine in reply to janeroar]

I was also diagnosed with VM in 2022, although I still have doubts about the diagnosis. I've had intermittent classic migraine since a teenager but during menopause and beco ming hypo they became more severe and frequent, often twice a week or more.

It was the sudden, overnight loss of balance that led to my diagnosis, the headaches actually stopped but I had 24/7 balance issues, dizziness, head pressure, light sensitivity, motion intolerance, brain fog, fatigue.

All extremely debilitating. I was checked for tumours and MS and my neuro suggested it was VM. I tried 7 or 8 different anti migraine meds including anti depressants, beta blockers or blood pressure meds. I had side effects on all of them and had to stop. I am very med sensitive so it wasnt surprising.

I did a lot of research, joined VM patient forums and came across Venlafaxine, in low doses it has had a lot of success for VM. One of the leading experts in Chicago now uses it as his gold standard. He recommends starting low and slow, gradually titrating up.

Which is what I did. Ven comes in capsules and if you get the delayed release its easier to tolerate. I opened the capsule, took out the beads inside, removed the ones I didnt want and closed the capsule again before taking. He recommends 37.5mg is a theraputic dose for many but some might need more. Its a tiny dose and no where near what a depressed person would be on. I found side effects pretty minimal, which surprised me as I was expecting far worse. I was a bit nauseous but it did wear off.

I was on Ven for about 10 months. Normally you take meds for about a year, to reset the brain and then gradually come off them to see how you manage. I started coming off really slowly in October, took about 3 months as I wanted to cut down very slowly. I've been med free since January and migraine and symptom free. My balance has improved enormously.

Whatever my episode was, VM or something else, then the Ven did help relieve it.

[janeroar in reply to Sparklingsunshine]

thanks for this info about the drug you took useful to know

Did you ever get muscle twitching / jerking when you’ve had vestibular migraine ? I’m finding this the most worrying

[Sparklingsunshine in reply to janeroar]

I have Fibro and Ehlers Danlos so get weird sensations a lot anyway. I get muscle twitching in my calves and I have pins and needles in my hands and feet pretty much all the time. What you've got to remember, and my Vestibular Physio told me this, is that migraines are not " just" headaches, they are a complex neurological condition that can affect just about anywhere or everywhere in the body.

They are an assault on the brain and central nervous system and are very traumatic. I've heard of people who experience temporary paralysis in limbs, violent sickness or retching, diaharrea. The list of migraine symptoms is as long as your arm.

Magnesium is often low in migraine sufferers and can cause muscle twitching. If you dont already maybe try supplementing with Magnesium. If you are concerned about the twitching please see your doctor as it could be unrelated to migraines.

[janeroar in reply to Sparklingsunshine]

Thank you that’s good to know. My GP in making a referral in case there’s something else going on. But it’s reassuring to hear from you about how globally impacting migraines can be.

[Sparklingsunshine in reply to janeroar]

Oh yeah, my husband is also a chronic migraine sufferer and his migraines can be really severe, he gets tinnitus with his, he's also had bad dizziness and vomiting. Weirdly before an attack he can get ravenously hungry. I've seen him eyeing up next door's cat before lol.

[janeroar in reply to Sparklingsunshine]

I get tinnitus and increased appetite too.

[Sparklingsunshine in reply to janeroar]

A lot of people who have been diagnosed with VM report chronic stress/ overwork or covid were the straws that broke the camel's back. In my case I had none of them, hence my scepticism of my own VM diagnosis.

[radd in reply to janeroar]

janeroar,

Sorry to hear all this. Your symptoms sound much worse than mine. I've probably only had ten visual episodes in nearly 3 years.

[Sparklingsunshine in reply to radd]

APS or antiphospolipid syndrome, an autoimmune blood condition can cause migraines balance issues and pins and needles. aps-support.org.uk/

[janeroar in reply to radd]

Re sex hormones. I’m on HRT. I take 3 x500mg of ustrogen which despite being prescribed might be too much as well as oestrogel.

[radd in reply to janeroar]

jane roar,

Are you really taking 1,500mg Utrogestan daily?

How many pumps of Oestrogel are you having?

[janeroar in reply to radd]

oh! No I’m not! Just checked after getting your message and I’m taking 3x100mg.

Two pumps of oestrogel. Try to do less sometimes but makes me feel tired and grumpy if I go down every day.

[Jo5454 in reply to radd]

Scouse me butting in with a ferritin ask please rad...you mention mutations on the MTHFR gene with ferritin, is there a test we can do for that? I'm a medium methylator for folate mthfr & it noted issues with vit d too,bit none regarding ferritin. I've always had probs kping ferritin up, with b12 def too. Very interesting read thank you.

[radd in reply to Jo5454]

Jo5454,

The common genes tested for mutations are usually C677T and A1298AC. If you’ve had previous MTHFR genetic testing and are asking if there are further less common impairments, yes there are many but I don’t know anything about them.

I was quoting STTM regarding MTHFR mutations influencing low ferritin but they fail to provide the reference. However, I do believe any reduction in the MTHFR enzymes performance risks problems with erythropoiesis via less conversion of folic acid and VitB12, and the resulting anaemias must influence all iron mechanisms.

[Jo5454 in reply to radd]

I see, that makes sense…thank you for explaining.

[helvella]

I've had several patches where I had repeatedly had visual migraines - sometimes several days in succession. Some prodrome symptoms, lots of visual, and feeling rather wiped out after, but no headache.

Every time, I have ended up blaming it on my thyroid hormone levels. Can't now remember the exact details, but combination of makes and doses. I think always under-dosed. But it could have been in part any other issue which affected how much thyroid hormone I needed - that is, a cold or something.

[janeroar in reply to helvella]

Yes I get those symptoms too. I’ve only had 2 days without migraine in last couple months so it’s pretty relentless. Any ideas whether connected to iron levels? My sodium on low side. Don’t know if could be related

[helvella in reply to janeroar]

For me, I'd be amazed if there were an iron connection. Last time it was measured, my ferritin was around the top for an older male!

I doubt my sodium was low - if anything I consume too much salt. But a very recent blood test showed sodium and potassium were fine. Therefore I rather assume I've long had adequate sodium!

I wish I could point at something to help.

[sparkly]

I had muscle twitching/ pinging once. It was due to antidepressants and serotonin syndrome.

[xLovelyxx]

I always get these symptoms when I drink too much and don't get enough salt/sodium in. Then I get this weird thirst that does't go away and just gets worse the more water I drink. Also the dizziness, headache, tiredness, muscles twitching.

I feel like when undermedicated/hypothyroid, the body isn't able to retain the sodium correctly or isn't able to excrete free water as efficiently, so we have to much water in relation to the sodium, and get symptoms of low sodium.

Maybe try to drink less and get more sodium in. Also your blood sodium showed low.

[janeroar in reply to xLovelyxx]

Thank you that’s helpful. Never thought of trying that I’ll give it a go.

[xLovelyxx in reply to janeroar]

Did it help you?

[janeroar in reply to xLovelyxx]

Hello. I’m drinking less and putting more salt on food and I haven’t had a migraine since. So that’s excellent. Only problem is that my bowels have seized up and my eyes are dry. Goodness our bodies are far too complex for me to comprehend. Maybe I need to work out the perfect water amount I need for my body. Not too much not too little. V Goldilocks!

[xLovelyxx in reply to janeroar]

First of all, I'm glad to hear that your migranes have stopped! Bur yeah, I feel you.

Since I know this "salt water problem" myself, I have a question. Do you notice being puffy when not consuming enough salt and looking normal when consuming enough? That's the case for me

[janeroar in reply to xLovelyxx]

I have a tight feeling under my skin - it’s been referred to as mucin on here. I can’t pinch the skin it’s so tight. I do get a lot of retention but I haven’t made the link with salt intake. I’m going to observe!! Thanks again for your input

[xLovelyxx in reply to janeroar]

Same!! But I get relieve with consuming mee salt. Would be very interesting to hear your experience, so I would be thankful if you could share it in a while☺

[janeroar in reply to xLovelyxx]

Do you mean to say more salt? I’ve started adding more and drinking a bit less but got a migraine today though not a bad one . Sometimes I wake up and almost immediately feel a migraine coming on and that’s what happened today. Also had visual disturbance (zigzag in eye ). I’ll keep going and will let you know!

[xLovelyxx in reply to janeroar]

Yes sorry, I meant to say more salt. How are you doing?