Brain symptoms still getting worse - Losing hope

[SeanQHX1]

Hi everyone again. After looking through some old threads, I see that someone previously reported brain symptoms which are exactly like mine and couldn't have put it any better into words. This was after I spent years thinking that I was the only one in the planet with this mysterious brain condition. While I now know that I'm not entirely alone with this, I feel terrible knowing that there are others out there going through what I have been for years, both with this illness and with dismissive doctors who don't want to help their patients get better and actually live again.

https://forums.phoenixrising.me/threads/how-to-cope-with-disabling-brain-symptoms.75418/

The symptoms described in this post are almost identical to mine and nothing at all like classic ME/CFS. Similarly to this person's story, I was doing rather well at college studying music production and sound engineering, and was just 5 days away from completing a 2 year course before this disease suddenly hit me. I went from being able to record bands in studios using mixing desks, effects units, Pro Tools etc and remember complex theories and mathematics on how sound works... to my mind being completely blank and getting nothing but headaches from trying to think and remember anything I learned from college, all just overnight. Since then, I've just been steadily deteriorating and I can no longer work, can barely socialise and have abandoned nearly all my hobbies and activies I once enjoyed. I feel like I could potentially still do these things, just that they take insane amounts of effort and willpower that I no longer have with my brain constantly killing me all the time.

It started off as a mild cold/flu bug (nothing at all like the viruses/infections that would usually trigger ME/CFS) and only noticed how impaired I was when I went back into college and tried to finish off my final essay. These impairments of course were nothing I ever experienced with any bug I caught, I didn't know what hit me when it happened and I never knew what "brain fog" was untill a doctor threw the CFS label on me (or post-viral fatigue as he called it at the time) and I began looking up the condition I supposedly had on the internet.

These brain problems I have are 24/7, barely flucuate in any way and have only been steadily getting worse since the onset, with further brain problems setting in over the years like headaches, vision issues, worsening insomnia, worsening anhedonia/flat emotions, other aspects of my memory and recall getting worse, horrible head feelings (hard to put into words), increasing tiredness and heart rhythm issues (bigeminy and SVT attacks). Everything I've tried in terms of food, activity, suppliments, nootropics and medications has had zero effect at all on my brain symptoms in the past years, felt like a waste of time and money and I've almost given up trying anything else as I just know that nothing will happen. I also kept a symptom diary for a while but it proved useless to me as nothing ever changed with my illness, other than it slowly worsening with time.

The only thing that's given me any relief from feeling so horrible all the time is taking high doses of codeine or co-codamol. While it doesn't help me regain any brain function I've lost, it sort of numbs my brain so I don't feel it being attacked so much, or at least makes those nasty head feelings/sensations more tolerable so I can function somewhat and get through my day. I'm concerned about the fact I've been taking opioids daily for the past 2 years, and especially having to use them more frequently as my disease progresses, but just now I feel like it's my only option.

Looking at the thread I mentioned, I'm suspecting that my condition could well even be some sort of autoimmune problem with me brain. The virus/bug I caught, despite just being a common cold/flu, could have perhaps triggered some autoimmune response in my brain during my sleep, on the night before that particular dreadful day at college. I imagine this could explain why my body seems to be completely healthy and in perfect working order (no CFS symptoms at all), while my head feels like it's under constant bombardment from something. Hopefully I can look further down this avenue and get tested for this.

Anyway, thanks for reading all this. I just hope I get to the bottom of this condition soon before it's too late.

 

[Wishful]

I'm not sure what else to suggest trying. I was lucky to find several things that do help me: T2 and cumin. More recently I found that Evening Primrose Oil helps me against insomnia. There were a few other things that worked temporarily, or which after taking them for a while, I no longer needed them. I say that it is at least possible to find things that reduce ME symptoms. However, it's like the lottery: you have to keep buying tickets and keep hoping that you'll win sometime.

While I'm not sure what specifically to suggest, I do suggest trying things that might affect microglial or astroglial cells. They're the brain's immune system, and I suspect they're in an activated state, which messes up brain function. Maybe try avoiding tryptophan, to see if that helps, since I suspect excess kynurenines play a role in the symptoms. Cornstarch pancakes (cornstarch, baking powder, water) should contain no TRP. The consistency is better if you add boiling water to the mix; cold water makes them flat.

If you're really desperate, you could try all the herbs and spices that you can access. Try them sublingually if possible, to maximize the amount entering the brain.

Yes, my body seems healthy too. It's my brain that isn't working right. The TRP (and niacin) avoidance at least helped me avoid the suicidal moods that the TRP and niacin caused. I think it's less a case of autoimmune response and more that the immune system is just stuck in an abnormal state. There's a process for signalling immune cells to return to normal state, and maybe something is interfering with that.

I'm not sure what your 'horrible head feelings' are like, but there are times that it feels like I'm wearing a too-tight motorcycle helmet, and I desperately want to take it off!

Keep on trying.

 

[SeanQHX1]

Hi @Wishful . Nothing I've tried in 3 and a half years has had any effect at all, good or bad, on my symptoms or any other aspect of my health, so you can imagine why I'm frustrated and on the verge of giving up. That said however, I will continue trying everything I can to see if it actually does something besides nothing.

I am not actually treating my condition as ME/CFS these days, due to much of the things I said above. I wouldn't say the symptoms I have are ME symptoms. Many of my symptoms are unique, difficult to describe and I thought I was the only person experiencing them untill I came across the thread I mentioned. My condition seems to be degenerative and is only getting worse with time. I reckon my condition could be something very rare, and could well be easily treatable, but doctors I'm seeing are just dismissing it as ME/CFS.

With the horrible head feelings, I basically feel like my brain is being attacked or aggrivated by something, causing it to deteriorate in the process. Not only is my brain likely inflammed, but it's like something is actively inflaming it and won't stop untill some sort of medication or treatment is given to stop it I imagine.

I heard a few people had somewhat similar symptoms, said they thought they were dying practically and the symptoms subsided within days just by taking anti-inflammatory drugs, corticosteriods etc. This is why I think it could be an autoimmune response or something along those lines, but I definitelly need to do more research on this.

 

[jmcaines]

Hi Sean,I replied to your first post as your symptoms are so similar to mine! I'm sorry that you're deteriorating -so am I and the only thing keeping me hanging on is what it would do to my children if I didn't! I was bitten by a mosquito 6 weeks before I became ill so eventually sent my blood to Armin labs in Germany who diagnosed avery weak positive Lyme disease so I'm trying to find the best lyme expert in the UK that I can as I'm too ill to travel abroad but they are few and far between! Have you pursued this route?

 

[SeanQHX1]

Hi Sean,I replied to your first post as your symptoms are so similar to mine! I'm sorry that you're deteriorating -so am I and the only thing keeping me hanging on is what it would do to my children if I didn't! I was bitten by a mosquito 6 weeks before I became ill so eventually sent my blood to Armin labs in Germany who diagnosed avery weak positive Lyme disease so I'm trying to find the best lyme expert in the UK that I can as I'm too ill to travel abroad but they are few and far between! Have you pursued this route?

I'm sad to hear you are also deteriorating with a condition like mine and are feeling this way. I hope you find a good Lyme specialist as soon as you can and see about getting proper treatment for it. Best of luck!

I suspected Lyme disease a while back as I took this illness suddenly after coming back from Download Festival. I had reason to suspect Lyme as the festival was a wooded area with mosquitos flying around and landing on people. I also ended up with a small insect bite on my arm the first day I was there, which could well have been a mosquito bite.

I was given a test for Lyme which was a Western Blot I'm sure which came back negative and doctors couldn't seem to give me any further information on the results. Going by what you've said, it could well even be a very mild form of Lyme that wouldn't show up on this test, or maybe one of the co-infections like Babesia, Bartonella etc. It isn't quite causing havok in my body like many other cases of Lyme I hear about, but whatever it is, it's severely affecting my brain more than anything.

 

[jmcaines]

I totally understand-I've said to my family all along that it feels like something's attacking my brain! I get constant head pain,pressure and snapping sensations and the worse they get the less I'm able to think etc.I don't know for sure the I've got lyme but it seems like the only way to find out is to see an expert and have further testing.I don't know if you're on Facebook but there's a Facebook LDUK group that you can join and where I've found most of the info and advice Good luck Janet

 

[Sarahloudobby]

Sorry to read so many people with these symptoms, I wish I had answers. The pressure in my head can be so bad and I literally feel like my head is too big or too heavy for my neck. I take certain over the counter medications to help when the sinus pains or migraine type pains get too much
Sarah x

 

[Wishful]

Nothing I've tried in 3 and a half years has had any effect at all, good or bad, on my symptoms or any other aspect of my health, so you can imagine why I'm frustrated and on the verge of giving up

Our responses to nearly everything is individual. I consider myself very lucky in finding two things that worked reliably for me. I found several things that worked temporarily, and (seems like) vast numbers of things that make my symptoms worse. It seems odd that you haven't found anything at all that affects your symptoms. If you really have to stretch to fit the criteria for ME, maybe it's something else (tumour?) that doesn't respond to much. Did your doctor jump too quickly to ME, and didn't bother to do other tests?

I think finding things that work for ME is about as random as the lottery. Jellybeans seem as likely to be a treatment as a prescription-only drug or a heavily marketed alternative treatment.

 

[Timaca]

The pressure in my head can be so bad and I literally feel like my head is too big or too heavy for my neck.

Have you seen this? https://www.mechanicalbasis.org/ Please read his story. He and others describe the head feeling too big or heavy for the neck.....

Here's a quote, from about halfway down the home page:
The sensation that my head was too heavy and sinking downward? It was explicable. It was a scientifically-validated, known clinical condition, a form of CCI known as “cranial settling.” I was not wrong. My head truly was sinking downward. Far enough downward that my spinal column was impinging on my brainstem, compressing it!

 

[SeanQHX1]

I totally understand-I've said to my family all along that it feels like something's attacking my brain! I get constant head pain,pressure and snapping sensations and the worse they get the less I'm able to think etc.I don't know for sure the I've got lyme but it seems like the only way to find out is to see an expert and have further testing.I don't know if you're on Facebook but there's a Facebook LDUK group that you can join and where I've found most of the info and advice Good luck Janet

Yep, sounds like very similar symptoms to what I'm experiencing, besides the snapping sensations. Generally, I head feels very uncomfortable all the time, almost like it's stuffed up with something, and when I try to think too much, it's like I'm straining myself and hurting my brain. If you could get arthritis in your brain, this is what it would be like.

I seem to get week long episodes where the "attacks" on my brain worsen to the point of being unbearable. During these times, I have to dope myself up on codeine for most of the days to numb my brain from the attacks, not something I would ever recommend anyone does unless they have no other option.

I hope you manage to get further tested, find out for sure if it is Lyme and get some treatment as soon as you can, the less you are stuck waiting around, the better with a condition like this. And I'll definitelly check out the Facebook group for Lyme, going by what I've said, I'd say there is still a chance my condition could well be a form of Lyme, or one of it's co-infections.

Our responses to nearly everything is individual. I consider myself very lucky in finding two things that worked reliably for me. I found several things that worked temporarily, and (seems like) vast numbers of things that make my symptoms worse. It seems odd that you haven't found anything at all that affects your symptoms. If you really have to stretch to fit the criteria for ME, maybe it's something else (tumour?) that doesn't respond to much. Did your doctor jump too quickly to ME, and didn't bother to do other tests?

I think finding things that work for ME is about as random as the lottery. Jellybeans seem as likely to be a treatment as a prescription-only drug or a heavily marketed alternative treatment.

The fact that nothing has done anything at all in 3 and a half years makes it seem very unlikely to me that anything will, in terms of food and suppliments you can buy.

My doctor at the time did jump far too quickly by saying I had ME, to say the least. After just one appointment with my GP without any tests or anything, I was told it was Post-viral fatigue at first. Then I was given some standard routine tests to check for diabetes, liver/kidney problems and my thyroid levels which came back negative. This doctor then just decided that it was ME and since then, other doctors I've been seeing just keep bringing up this "diagnosis" whenever I see them.

I did get a CT brain scan though and nothing showed up on it, and I imagine a tumour would cause more serious symptoms, fatal ones perhaps especially after 3 years. I do have my hopes though that it is something treatable and I can go back to living again.

 

[andyguitar]

I did get a CT brain scan though and nothing showed up on it, and I imagine a tumour would cause more serious symptoms, fatal ones perhaps especially after 3 years.

Yes it would, so you are amost certainly in the clear @SeanQHX1

 

[Wishful]

The fact that nothing has done anything at all in 3 and a half years makes it seem very unlikely to me that anything will, in terms of food and suppliments you can buy.

One way to look at this is that it is possible to buy hundreds of lottery tickets without winning even one, yet the next one has the same probability of winning as any other ticket. Thus the next new thing you try could have a strong effect.

Based on my experiences with ME, I think it's more likely that you have some other disorder, or just that you have a different ME experience than mine. If I bought a dozen so-far-untried foods, I think it's likely that at least one would have an effect on my symptoms...most likely negative.

How confident are you that you do have ME? Do you have distinct PEM? Delayed or immediate PEM?

 

[SeanQHX1]

I don't get any PEM or crashes at all, or at least they arn't noticable. And my condition hardly fluctuates in any way, it just seems to be a permenant degradation with all my symptoms. I don't appear to have any major problems with my energy levels either, I just feel generally sluggish, weak and low on stamina all the time, more so as my condition deteriorates.

I definitelly think it's another disorder and not actual ME. I've sadly seen many people on here in a similar boat, testing positive for Lyme, Candida, or growth hormone deficiency for example after being previously diagnosed with ME/CFS or Fibromyalgia.

 

[Wishful]

PEM is a defining symptom of ME. I suggest making more effort to find a doctor who will do a better search for other possibilities. What you have sounds very serious, so I wouldn't just lay back and say that 'It's ME, so there's no point in doing anything.'

 

[ellie84]

It looks like you haven't done any actual investigation on what you have, a CT scan period isn't enough. Have you read about all the CCI, AAI, Chiari malformation, tethered cord etc. stuff? I think there is a whole lot you have to do to find out what you have and hopefully get a treatment. I hope you have someone helping you in doing it or you can do it your own. Trust me, there will be no doctor chasing after you with diagnoses and treatments.

 

[SeanQHX1]

PEM is a defining symptom of ME. I suggest making more effort to find a doctor who will do a better search for other possibilities. What you have sounds very serious, so I wouldn't just lay back and say that 'It's ME, so there's no point in doing anything.'

I completely agree. I get the impression that the NHS doctors I've been seeing just expect me to do nothing because "it's ME", which shows they have no idea at all what it's really like for someone who genuinely has ME/CFS. GPs should never be diagnosing anyone with ME as far as I'm concerned, but I guess here they end up doing so with very little ME specialists going around in the UK.

Yep, the fact my health is rapidly deteriorating when I'm 25 years old and should otherwise be healthy is very serious. I have written an 8-page letter to the NHS about all my concerns which has apparently went to a board where they look at more serious cases with patients, so I sure hope something will be done here. I do still have my doubts though.

It looks like you haven't done any actual investigation on what you have, a CT scan period isn't enough. Have you read about all the CCI, AAI, Chiari malformation, tethered cord etc. stuff? I think there is a whole lot you have to do to find out what you have and hopefully get a treatment. I hope you have someone helping you in doing it or you can do it your own. Trust me, there will be no doctor chasing after you with diagnoses and treatments.

Hardly any investigation has been done, although the NHS doctors I've been seeing seem to think they have done a lot for me, or at least want be to believe so. I have almost no faith at all in the NHS now, but still rely on them as I can barely afford private tests/appointments, especially with my government threatening to take away my only source of money all the time.

I've spent nearly every day on the internet at some point trying to figure out what could be causing my illness and am aware that if anyone is going to get to the bottom of it, it's me. But I've been struggling as I can barely understand any in-depth, non-trivial text these days and my brain kills me trying to. I've looked up well over 1000 of rare conditions on the internet and all I do is worry that it could be any one of them, but I don't know what to do and feel completely helpless, especially with no one around who can help me at all.

I will have a little further look into Chiari malformation, tethered cord etc, although I am narrowing my condition down to things that cause sudden, seemingly viral/infectious onsets.

 

[ellie84]

Have you tried contacting some patients associations of the conditions you think you might have? Even if you don't have those conditions in the end, they may be able to help you in some way.
How do you get on with your daily life if you're so impaired? Do you live with your parents?
I understand you, because I have spent a lot of money on private practitioners and drugs and supplements which are not covered by the national health service and I haven't found out what I have exactly nor a cure for it either. And now I have no money and no job and it's difficult to look for a job and find one when you are ill. We all go through similar stuff more or less, I think. Try to take anything you can from anyone that can give you something at any given time. I tell you, it's not selfishness in the condition we are.

 

[jmcaines]

Sean when you're up to it try to join that facebook lyme disease group-there are lots of people like us and you can ask questions and get advice

 

[SeanQHX1]

I have emailed and messaged patients on other forums and Facebook who have symptoms similar to mine and they have had no luck either it seems, despite more tests and investigations being done than in my case. It does seem to be something very rare I have, although probably more straightforward than anything like ME/CFS or fibro, and likely treatable in some way.

Currently I live with my mum who is also unable to work due to health problems. Both of us have just barely have enough money to pay the bills now. I was about go to university before suddenly becoming ill, and now I have no chance of getting a job or doing anything with my life now, all my prospects are gone for the time being. The fact I have this illness on top of having Asperger's syndrome makes things even more difficult, and makes some things seem impossible now.

I'm a musician and still play sometimes with bands but it's becoming hard work for me now with this condition . I need my bandmates to transport my equipment and set it up on the stage for me. And for me, it's simply a matter of showing up and getting the job done. I'm always having people at gigs congratulating me and wishing me luck on my future career, often calling me names like "Rick Wakeman", etc which depresses me so much as I feel like I have no future now and others have no idea of the pain I'm really in. Nonetheless, I'm still glad to be out doing something that gives my life some sort of meaning and purpose while I still can.

In the meantime I will continue trying anything I can and continue seeking help from others. It is not selfish at all to reach out and ask others for help, especially when you're in a constant state of suffering all the time with an illness and they can help you in some way.

 

[jmcaines]

I understand but there's a facility on there for applying for funding for tests etc so you could bear that in mind