June 2015 - Woke up with pain above left temple after working out in the gym the night before, *note I had been carb backloading eating a ton of nuts during the day. Week goes by no change to the dull ache now accompanied with inflamed temple artery. A few visits to the GP and advised it was probably just a headache and I must had slept awkwardly on my head...this is when I left my GP and signed up to my old practise when I was a teen. I couldn't believe he would give me that diagnosis based on weeks of persistent dull ache with an inflamed artery that was never there before!
New GP sent me for MRI of head, pituitary and cervical - all came back clear.
After tons of research I came across TMJ - temporomandibular joint disorder, the symptoms are deliberating. I met the top two specialists in London and they both confirmed I have TMJ. Gave me a bit of relief to finally have a diagnosis, was advised to leave it for a month or two as it may resolve on it's own.
I decided to go a chiropractor as I thought it might help with the back pain I was experiencing from PFS and my TMJ. He made things 1000x times worse after a neck manipulation!!!
Two days laters, headaches, couldn't focus, no appetite, constant nausea, tightness in neck when moving left or right.
Symptoms of no appetite, constant nausea and stiff neck continued for a few weeks, after tons of research I came across Atlas c1 misalignment. Symptoms - https://www.atlantotec.com/en/
and the impact it has on the Vagus nerve https://www.atlantotec.com/en/disorders
This was exactly what I was experiencing, as you can see some of the symptoms are very similar to PFS too. The only thing that would improve my concentration, appetite, stiff neck and nausea was diazepam. After the chiropractor I had extreme sound sensitivity and I already had issues with anxiety in public places due to PFS but now it was only manageable with diazepam as it relaxed muscles.
Luckily a Nucca practising chiropractor was in London, gave her a visit and immediately she knew what was wrong with me by just looking at my hips, shoulders =, neck position etc. Had a xray confirming the exact position of my atlas bone and then she corrected it and immediately everything felt better. Less anxiety, could concentrate, no more nausea, appetite returned. I even slept a full 8 hours that night!
However I must go back every 3 weeks to check my alignment as I keep coming out, this is a long process.
Decided to start focusing on recovering from PFS, i had stopped all gym, supplements, diets since June as this whole ordeal caused me so much stress and I felt my PFS sides were getting worse, especially muscle wastage/joint pain. Decided to get Thyroid levels checked privately as the regular tests with GP came back all in range but they wouldn't check RT3. Met with Thyroid naturopath DR who tested me for RT3, 24 hour salivary cortisol and 24 hour thyroid.
RT3 was above range, cortisol was at high end or slightly over in both PM readings and low T3 in 24 hour urine test.
Dr decided to put me natural supplements to support adrenals, nutri adrenal, nutri thyroid and nutri t convert to get more thyroid hormones into my tissues.
I immediately noticed more energy, really vidid dreams every single night (not sure if this was a good or bad thing) accompanied with nocturnal erections every night without fail.
Just before this I might add that my eyes had become really dry, blotchy/visual snow type vision with floaters. Was referred to the eye hospital by my optician and they said no issues with eyes and it must be cerebral. I thought this might be a thyroid issue, it did get slightly better but this has been getting again recently and I 'll explain in a bit.
End of October I started experiencing awful headaches again but this time around my sinus region one sided mainly, bridge of nose around right eyebrow, right forehead and top of head. I did have a really bad cold prior to going to mexico at the beginning of September so I presumed this may be a sinus infection. But it was really painful and was causing a weird type of brain fog too. Again i was worried as my father died of a brain aneurysm so I am always cautious of my head. I privately went for another MRI to rule anything out, again came back all clear also showing now nasal blockage. ENT via GP referral also confirmed no sinus disease.
Now the interesting part, prior to getting an ENT referral my Dr gave me 2 sets of antibiotics which I took as I also initially presumed it must sinus infection due to the bad cold I had 6 weeks prior. Both did absolutely nothing apart from making my insomnia and digestive issues even worse, I finished only 2/3 of each prescription.
I decided that my headaches must be due to my TMJ disorder so started splint therapy after I had to have another MRI specifically for my TMJ to showed where the discs had displaced and what stage I was at, this is ongoing now with very minimal improvement.
By this point I decided to come off my thyroid supplements as from the initial improvement I seemed to be declining into a sense of horrible derealization, worse sleep, just generally losing my sense of reality. My original brain fog seemed to have disappeared and foods didn't necessarily trigger it anymore but it just didn't feel like I was the one actually processing the thoughts, more like I was watching the world through a dirty window and everything just didn't seem real anymore. I told my thyroid dr I had stopped and agreed to lay off and see what happens to my symptoms and just continue with vit d and c supplementation to support naturally.
Now I had a persistent itchy rash that started in September that just wouldn't budge, similar to when I first crashed. After trying different topical creams my GP gave me an anti-fingal med Itraconazole/Sporanox, felt fine the first couple days and then suddenly I was hit pain in lower limbs and general numbness across my whole body but mainly in hands and feet. Cold and hot flushes etc. The feeling was similar to my first crash but nowhere near as intense.
My skin felt like I had been dipped in bleach, really strange and worrying. I told my Dr and he advised me to stop which I had done already.
Mid December I was deteriorating and the peripheral neuropathy feeling wasn't budging so I decided to go a&e as I also had bp of 150/100 which I have never had, did the usual tests and they said everything was fine.
I was starting to literally feel like I was dying, derealization was at it's peak, but it was the multi system join pain and bone click, I had lost so much weight the past few months and I was struggling to carry my weight with so much pain mainly in the lower half of my body. I got home and had a glass of kefir I bought from the supermarket and then instant crash like my first crash. Everything was slow motion, fatigue, joint pain/clicking like I've never experienced and for the first time I had serious suicidal thoughts, luckily I had my family and girlfriend with me. Went a&e after a couple days as I felt so weak, never this bad from PFS. Again did all tests and everything showed normal except elevated eosinophils which was actually elevated on previous visit to the hospital but nobody picked up on this. They did an x-ray of my chest too as had been suffering from shortness of breath since my Mexico trip, again all clear.
In between both hospital trips my Dr decided to test for allergies to wheat, soya, eggs and milk plus he wanted to rule out Lymes and check my IgE immunoglobulin.
Everything is normal except IgE at 900kU/L!
I have been referred to a rheumatologist whom I meet on Thursday and waiting for an approval from my health insurance for a gastroenterologist.
So I am in worse position now then I was 20 months ago with my eye sight getting worse and worse now. I've been signed off work for two weeks by my GP.
So far just Eosinophils and IgE levels raised. I will post my Thyroid results from back in October and current blood tests from A&E from a couple weeks ago.
Things I think may have contributed to getting me worse:
1. Thyroid Meds, maybe the dosage wasn't right.
2. Use of diazepam over a couple month period, on and off to control the c1 atlas issue and tmj flare ups. I didn't use this daily but I'd say maybe twice a week on average over 2-3 months at 2mg only.
3. Excess Stress, no exercise and very little activity in general with a poor diet.
4. Taking a strong probiotic 50 billion with 10 live strains bacteria, I felt it was improving my brain fog but making other symptoms worse and could potentially been causing more havoc inside.
5. I was cycling tongkat, tribulus, alphahard and pct for a few months. I had just started a alphahard cycle for around a couple weeks and had to abruptly stop due to the the TMJ headaches back in June. Maybe that could have messed up hormones without any PCT or management since?