Give it a shot @peter31 and wait a few months to see if it improves. Honestly over the last 6 months of being completely gluten free it’s really not that hard. In the end you forget what cake and pasta tastes like and bread was overrated anyway ;). There are loads of GF alternatives out there.
Adding a bit of an update since my original post in March. Everything you’ll see below will be since my original post on March 1st - so almost 4 months on from my original post, 5.5 months since realizing I had PFS and 9 months since stopping Fin.
Things I’ve purposely changed
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Am no longer on most of my supplements, this includes vitamins, nootropics, chinese medicine etc (full list in initial post). The reason I stopped these is I was doubting their effectiveness at one point and also had to stop for a full blood work my endocrinologist had me take (included in this post). I stopped everything at once on the 29th May (about 3 weeks ago - 8 months after stopping the Fin). My personal feeling is that honestly, prolonged supplementation of non-prescription medicine is not necessary…you can come off your pills if you want depending on your state of course! Zinc, Mag, Vitamins etc are great and definitely help during the short term but they’re not changing your life over the long run if your diet is on point. Were they the reason I feel so good right now…maybe…but I’m not sure I’m convinced. What I have kept however is the gut health supplements, I’m still taking the probiotic from time to time (not everyday) and sometimes the prebiotic - I figure gut health is so important and honestly believe the mental aspects are heavily linked to the gut so I kept that for good measure and haven’t stopped.
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Very slowly started incorporating refined sugar back into my diet, meaning I’m not purposely eating it, just able to when I want. I’ve done this slowly and have not noticed any changes to my mental or physical state in any way. Things like small amounts of chocolate or sweetening a dandy coffee with sugar for example is now ok and I do it regularly.
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Back at work more or less full time, this has allowed me to focus on other things other than my health and is a welcome distraction. I have the worlds easiest job at the moment (despite working as a senior manager in IT) so I’m milking this for all it’s worth. I definitely feel like my stress response has drastically improved and I’m able to cope with stressful things in the moment and also not allowing them to block me from sleeping the night before. This is a huge improvement.
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Increased my exercise and workout intensity. Back in March, I was only long distance running for short bursts, say no more than 20min at a time, constant pace, still able to hold a discussion. No HIIT for example. Now i’m bustin out heavier weights, doing short HIIT workouts, Powerlifting and feeling pretty good, back to my old self…almost.
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Able and ok with not keeping a perfect sleep schedule. I’ve noticed now I’m not so focused on being in bed at 10pm and out of bed at 8am. My new schedule is 10:30pmish and out of bed between 6am-8amish if I want…sleep quality on the other hand I’ll explain below.
Things I’ve noticed
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Over the last few months I’ve noticed a drastic reduction if not complete cessation of the brain fog, nausea, unusual stress tolerance, lack of motivation, panic attacks, depression, slurring speech, confusion etc. Some of these changed overnight (more or less) some took weeks if not months. I’m so happy to report this as I’ll never forget what all of those felt like, specially experiencing them daily all at once for 3-4 months straight.
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The hypoglycemia I mentioned within my original post that I was experiencing was apparently not the medical definition however all the symptoms pointed to it. My endocrinologist gave me a glucometer to test my blood whenever I felt the symptoms and never did I go below 5.0 mmol/L. What I noticed though is that there is some kind of link to insulin / glucose as the more intense the symptoms, the lower my blood glucose would be. In my log I would write, severe shaking, confusion, irritability, shaking eyes, fast heart rate, sudden awakening etc and the intensity would depend on where I was between 5.0 and 6.0. This was consistent across multiple entries taken when waking at night. In the end, this endocrinologist stated there was nothing they could do to help me as I was not fitting within their perfectly defined square of medicine. These symptoms have drastically reduced (before I would need to eat every 2 hours throughout the night to sleep) however still present, to overcome this I eat a small bowl of muesli every night right before bed which takes me right through to the morning without needing to get out of bed or experiencing any of these issues. I plan on trying to reduce this portion slowly with the goal of not needing to snack in order to avoid getting up at night to eat.
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Sleep has considerably improved! My schedule is 10:30pm till about 8am with several awakenings during the night, always after 2amish. I’ve noticed I’m not worrying about sleep as much as before and my time to fall asleep has reduced significantly now to anywhere between a few minutes to 15min max. I also feel considerably refreshed when waking up the final time and / or getting out of bed. I’ve also noticed I’m starting to dream now, although some can be pretty intense but it’s good news as it means I’m drifting in and out of the later stages of sleep. One dream I had recently for example, I dreamt that I was deep in water, suddenly swimming to the surface and just before I got to the top I couldn’t hold my breath and took a huge gulp of what would have been water. This woke me up in a panic as in real life I had done the same, took a huge panicked breath of air! Fken weird but hey, I’ll take it.
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Some of the supplements you’re taking might be making things worse in the short term! The reason I say this is linked to the hypoglycemia I was experiencing at night. Once I stopped all the supps I noticed huge changes in the severity and frequency of the symptoms for the better. Many supplements lower your blood sugar so make sure you’re testing supps you’re taking by going on or coming off one by one and waiting for changes over weeks, not days. Once I stopped the glycine and Ashwagandha I was finally able to stay in bed and during the day no longer felt these huge dips of blood sugar. The amount I was taking were all normal, either indicated on the bottle or found on this forum so it wasn’t me being a dumb ass.
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As mentioned on this forum and probably widely known throughout this community…most medical practitioners have no fken idea and do not care. My recommendation is to find a really good urologist, one that can come with you on this journey and is someone you can lean on during tough times. Mine spent weeks researching this condition, rang around within the community, explained things to me that were understandable and gave me his direct mobile number. We speak frequently on Whats App and I really gets a sense that he cares and understands what I’m going through. This alone really helped. The endocrinologists (x 2), neurologists (x 4), sleep specialist, general practitioners (x 4) and naturopath I’ve had, all 12+ of them, are fucking hopeless and a waste of time. Apologies but it’s true. If your profile doesn’t match with the contents page of the book they studied in university chances are they’ll either drop you or give you bullshit advise. Just find a good urologist, psychologist (if needed) and functional doctor and that’s it. Thank me later. Maybe I got unlucky, maybe I’m in a backwards country (that’s likely true) but for me, those months wasted doing stupid blood tests or sleeping pills just prolonged my condition and slowed recovery.
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I’ve been testing lately with gluten, alcohol and caffeine and can safely say these in small amounts do not immediately trigger PFS in me like they do others on this forum. I’ll continue testing but feel like caffeine might be the worst out of the three and seems to bring on more of the psychological side of things. I’ll provide an update in a few months time.
Current symptoms and new elements
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Tinnitus I’m afraid hasn’t changed at all, still hearing that high-pitched noise in my head 24/7. Sometimes it gets louder at night, sometimes is pops randomly and is more intense during exercise or when bending over. I can also make it worst if I push against the side of my face, to the front of the entrance of my ear strangely enough.
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Sleep disturbance as mentioned above is still there but appears much less intense and disruptive. I wake up about 3 - 5 times a night however am able to get back to sleep anywhere between 1 - 30 minutes later. I’m not actually getting out of bed during these awakenings, as long as I’ve had my muesli snack. This again is a major improvement since months prior when I would be completely unable to sleep between the first wakeup at 3amish till about 6am,where I would be so exhausted I would pass out from then until 8amish. During daylight hours, these hypoglycemic symptoms are a lot more manageable now and way less intense, I can go for 4, 5 even 6 hours without needing to eat or snack.
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Tetany / Twitching is still there in my right hand and left thumb. The hand is still quite shaky however the thumb is pretty good compared to before. I’ve also noticed the thumb shaking is very much linked to my state of stress, the more stressed I am the more the thumb shakes uncontrollably.
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Weight gain: Now this is a new one and could be linked to many different things I have going on at the moment. Could be that I’m basically eating another meal at 9:30pm as mentioned above, could be that i’m not as active as I once was but still eating like I am, could also be linked to age. But I have put on a considerable amount of weight in a short amount of time (about 2-3 months) and most of it around my mid section. I actually have rolls forming under my lats! Being a skinny kid, fit up until now and always being able to eat what I want, even as a 32 year old…this is very strange. I’m now actively trying to incorporate a few weight loss techniques into my diet / programme without putting much stress on everything else to see if I can shift this fat. Honestly, this is the least of my problems, if getting fat for a few years means I can rid myself of all this other bullshit then fine, bring it on!
Things I think are still important
- Diet
- Prioritizing sleep (or the attempt at it) above everything
- Surrounding yourself with a good urologist
- Exercise
- Reduce stress
- Understanding that healing from this poison will take time
I’ve also included some tests I had done recently, apparently everything came back normal, if anyone has any insight do let me know. They’re in French but the words and terminology are more or less the same.
Taken 18th March 2020
Taken 29th May 2020
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Do you experience any jaw pain / ear ache icm with the tinnitus? Is it in both ears?
Yes actually I did get jaw pain but I’m not sure it’s related to the tinnitus. That jaw pain I felt during the night seems to have gone away now. The tinnitus is not in the ears per say but more in the head, it’s a high-pitched ringing.
Do you have it? Has yours changed over time? Have you done anything for it, acupuncture etc?
Im almost 10 weeks off fin and Tinnitus icm with earcache/jawpain on my left side/ear has been one of the most bothersome symptoms for now.
It has changed a lot since the very start, the volume, sound and sensation. The first few weeks the sound changed on a daily basis (high pitch, hissing, humming sound, computer sounds), it was mainly in my ear as well in the right top side of brain.
However at the moment its mainly in my ear (high pitched ringing), the volume fluctuates luckily goes from tolerable to full retard mode, but the sound itself doesnt change. Its a constant ring.
can hear it clearly when I close my ear with my hand. I’ve went to a Chinese salon to loosen up the muscles and get acupuncture. This helped, however I decided to quit after 4 sessions due to the costs.
Ok your symptoms sound exactly like mine but maybe less insane, I don’t have those crazy retard mode moments.
Im going to try give acupuncture a go and report back. Hopefully it doesn’t make it worse.
I have got tinnitus. It’s in my mind next months is 1 year I stop the drugs.
So an update on alcohol: I tried for the first time in 9 months a gluten free beer, tasted delicious…but wow did it screw me up. Felt great while watching TV, all good till I got to bed and tried to fall asleep. All of a sudden was completely unable to initiate sleep…I could feel my body wanting to but something was stopping it. I could feel the sleep drag but almost like a jolt of adrenaline would get in the way. This lasted for a few hours until I guess my body processed the alcohol. WTF.
So there goes that testing. I’ve concluded gluten in small amounts is fine, no impact. Caffeine in small amounts is not good, psychological issues reoccur and finally alcohol in small amounts seems to be a stimulant and sleep retardant of some sort.
It’s been more than a year since my last update in June 2020. Things are looking really good but I’m not out of the woods yet.
Since June 2020, things I’ve noticed;
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Gluten - Over the course of this year I’ve done a lot of testing with gluten and can unequivocally say it 100% F#@K’s me up. I wish I had known this over a year ago, I would have saved myself a lot of pain and agony. I wouldn’t say it’s coeliac level of sensitivity, the symptoms are very noticeable after drinking a beer full of gluten or a small plate of gluten pasta for example. The insomnia, brain fog, shaking when fasting more than 3 hours, stress intolerance and mood issues all comes back about 3 - 12 hours after consumption. The more I consume and frequency of consumption back-to-back the more intense the symptoms. I usually find depending on the amount, that it takes between 1-3 days to wear off. When the symptoms are really bad I’ve starting taking a probiotic packed with proven strains to help digest gluten - I can’t confirm if this really helps or not, maybe just placebo. To confirm, I’ve never had noticeable gluten issues in the past which is why it took so long to get to the bottom of this being a possible trigger. Since going gluten free/low gluten I feel alive again, my sleep is much better and my stress and mood levels feel like 99% back to normal again. I remember just before realizing gluten was the biggest part of my symptoms, I would eat a massive plate full of gluten pasta at lunch and 3 hours later, at work, I’d be in a room of 6 ppl in a meeting having a total stage 9 panic attack almost to the point where I needed to leave the room. Since stopping gluten I’ve not had one since.
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Alcohol - After some testing I can definitely say alcohol disrupts sleep and brings back brain fog but not as bad as I originally thought. This might be the healing process which has progressed though so don’t quote me on it. The way I’ve tested this is by drinking certified gluten-free beer in different quantities and observing its effect. Removing gluten from the equation helps to rule that out as a possible trigger.
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Exercise - Exercise tolerance is surprisingly still an issue. What I find is the more intense the work out the worse my sleep gets. I wake up shaking at 3am and need to eat to calm down. Intense cardio can really trigger it but not as bad as a hypertrophic or powerlifting session. It seems a lot of stress on your CNS via weightlifting has the worse effect. Squats, deadlifts, big back or chest exercises.
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Tinnitus - This one is the least of my concerns but it’s still there. No opinions on whether it’s changed in severity or not. I mostly don’t notice it and it doesn’t really seem to affect my hearing or sleep.
Anyone reading this please please please consider how your gut health is impacted by this poison and how certain types of foods are making your symptoms worse. Gluten, dairy etc have all been mentioned on this forum a million times. These do matter, look into it and do your own testing. For example dairy has no effect on me. Test over weeks and months not one or two sittings. Keep a diary also so you can gauge how bad things are getting as it’s easy to forget how your sleep gets affected over weeks/months. If you do your own testing and find it’s not affecting you, that’s great, move on and try find other triggers.
I wish you all well friends, stay strong, Jezza loves you. xox
3 Likes
Do you have symptoms of constipation?What foods do you eat to increase serotonin
I didn’t have any symptoms of constipation, in fact quite the opposite. I also don’t focus on consuming foods to marginally increase XYZ. Not worth it the time and effort.
Hi @Jezza,
I hope you’re doing well, I read you also suffered from hypoglycemia and I was wondering how are you doing with that? Has it gotten better?
Regards,
Kathy
Hi Jezza,
I seem to have almost identical symptoms to you, primarily neurological with the worst being the sleep disturbance. So far, I have gone Gluten/caffeine/alcohol free for 3 months. I have mostly recovered from all symptoms during this timeframe except some minor recurring anxiety issues, however the sleep disturbances have not gotten much better. I cannot find a doctor worth anything to assist me with my journey, so I am trying to figure it out on my own. (With the help of this beautiful forum!)
My sleep recovered significantly in month 2 and was normal for about 2.5 weeks, but I then had a 2nd (and 3rd) crash and while my other symptoms are mostly gone the sleep is extremely poor for past month. I go to sleep around 9:30 - 10:00PM and if I sleep at all, it’s usually only 1-3 hours. Occasionally I’ll make it towards 3AM (4-5 hours) with vivid dreams and on those rare days I feel great.
My questions for you are:
- How did recovery of your sleep progress, was it a steady recovery?
- I am about to try a supplementation regimen similar to yours, how long before you saw results for sleep disturbance improvement? I just want to know what to look for.
- Was time of day that you took these supplements important to support quality sleep? If so, is there any rough schedule outline you could help me with?
Congratulations on your recovery, and thank you for any help you can offer!!
Hi! Sorry for the late reply, I try to keep off this forum as much as I can.
Are you still here? Let me know I can answer your questions.
Hi Jezza,
Thanks for getting back to me! I am still here unfortunately. I got much MUCH worse after this post, but now I am doing much much better. My sleep is decent now but can still definitely improve. I am getting around 6 hours a night with 1-2 awakenings. Has your sleep continued to improve, any tips for this?
I also saw you took melatonin. I am taking 0.5mg time release per night. I don’t take it to go to sleep initially, but instead to stay asleep and assist with going back to sleep. I take it as I’m laying down for the night. I don’t want to become reliant on it though, but I’m doing so well currently I don’t want to change ANYTHING after what I went through. Are you still taking melatonin? Did you ween off it? Any advice or tips here?
I hope you’ve been continuing to recover!
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Hi Nathaniel, much better now as I know what my triggers are - gluten, blue light at night and not prioritising sleep. Since steering clear of these I’d say I’m 90% back to normal.
How are you doing?
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Bonjour Jezza,
Tu indiquais que tu avais un émoussement émotionnel dans la déclaration de tes symptômes, mais tu n’en parles pas dans le reste de ton témoignage. Tu pourrais nous en parler je te prie ?
Bien à toi.
In two days marks the 4th year anniversary of posting this saga! Wow 4yrs already, can’t believe it. I’ve been told it takes half the time you spent taking fin to heal from it…sadly I’m not back to 100% but I’m very happy with progress.
I’ve gone through a lot and so far this is the update;
- I’ve had a massive breakthrough with blue light, more on that here - I wish I had known about this earlier!!!
- I’m back eating gluten which is obviously increasing my quality of life, I believe going GF was a major part of healing for me in the first few years of PFS
- I still notice my resilience to stress is a problem, more specifically with public speaking / presentations for example. I’m working through this though and I’m conscious of it which is half the battle.
- My sleep hygiene is the best it’s ever been (even with a 4yr old kid) - so important in my opinion
Hope this helps for anyone out there.