I haven't posted for a while. My condition deteriorate to the point that I am bedbound since 2 months now.
I'm not bedbound because I can't sit or walk but because I have a constant "brain on fire" and extreme brain fog.
It's difficult to explain but each time I try to force my brain to work, for example, watch TV or my phone, speak to my wife or my son, the pain, pressure and tinnitus increase. If I force, this cause severe nausea (not stomach related nausea, but nausea caused by pain).
If I try to walk I can but this cause an increase of all my brain symptoms.
I remarked a strange thing, when I walk a little and have to stop, it's not because I have pain in my muscle, but because my brain struggle my all "stimuli". It's like "vision input" when I try to move generate to much information and my brain become sensitized and say me "stop". My face look very tired and swollen.
It's not physical in sense of muscle Weakness.
So I'm confined in my bed, with no lights.
I have tested many supplements and treatments.
I would like to give nimotop a new try but my doc tell me that I can't take it when I take bisoprolol to manage my heart rate.
I can juste write a little.
David, I am sorry you are having this difficulty, and so much and so often.
You explain it well, and it is very understandable to me.
I can text my family when I am having these issues. I have a lot of pain as well. The pain makes me vomit as well. Look into the Far Infrared heating pad. I am amazed at how much it is helping me with pain.
I am so sorry you are having a hard time!
Do drink even if you don't want to. I drink chicken broth as well when I am super sick.
A few months ago somebody posted a suggestion for dealing with sensitivity to sound: https://forums.phoenixrising.me/index.php?threads/my-cure-for-sound-sensitivity.60645/#post-987122. I don't know if it will be helpful for you, but it might be worth reading about.
I remarked a strange thing, when I walk a little and have to stop, it's not because I have pain in my muscle, but because my brain struggle my all "stimuli". It's like "vision input" when I try to move generate to much information and my brain become sensitized and say me "stop".
Hi David- I think low grade brain inflammation is often a cause of many symptoms. I have found great relief in treating mitochondrial dysfunction.
The best relief I get is from 15 grams a day of Branch chain amino acids (BCAA's). I also get good relief from coq10, B1 and pantethine. These all work to make mitochondria work better.
The BCAA's have completely stopped the flu-like flares I used to get, for 2 months now! Which are almost certainly centered in the brain. Even though I am much more active and going out for walks 2-3 times a week now.
It seems very clear to me that mitochondrial dysfunction is the cause of most of my PEM, fatigue and flu-like symptoms.
The BCAA's have also helped tremendously with my ability to focus and concentrate. Which tells me they have a big affect on brain function.
Hope you get some relief in your symptoms very soon!
After few weeks on LDN I’ve got some relief from symptoms that you described.
One year ago I added high dose Omega 3 and Turmeric and all of them really helped me. Right now I’m mostly bedbound and completely housebound. I have really bad PEM after physical activities but my brain works much better and feels much better. I don’t have this strange pressure in my head, much less pain, much less brain fog.
I hope you’ll find something that works for you. Good luck.
I think low grade brain inflammation is often a cause of many symptoms.
If you have ideas, I can juste write a little.
I agree with @ljimbo423. I suffered for many years from chronic headaches and head pressure, and was finally able to get relief from a variety of things. A big thing I do is to apply (daily) a mixture of DMSO and magnesium oil on my neck and face (everywhere on my head where's there not hair). DMSO is actually used in conventional medicine to drmatically reduce pressure that builds up in the brain after a TBI, and which is often fatal. DMSO generally brings this pressure down within minutes. I feel it does the same for my lower-grade chronic brain inflammation.
Sorry to hear your struggles.
I was in a similar situation. I was bed-bound for 6 months with extreme malaise, brain on fire feeling, and extreme irritability. I was light sensitive, but not wasn't so bad that I could use the computer.
1 thing saved me and got me from bedbound 20 hours/day to mostly homebound and able to run a few errands out of the house (1-2 hours out) per week. I also felt like a bit of my personality come back. Peptides, specifically peptides Thymosin Alpha-1, Thymosin Beta-4, and BCP-157.
They seemed to basically take away all my brain inflammation, and they have been a lifesaver. They are immune modulating and immune balancing. So if you have immune and autoimmune problems, they might help. I get them from Tailor Made Compounding Pharmacy, but they require a doctor's prescription (which my parent writes). You can also get them from other "Research Peptide" websites that don't require a doctor's prescription. If you are in France, maybe there are other compounding pharmacies that offer them.
I am sorry your are still struggling so much.
Depending of supplement I try, I often have strong tinnitus, headache and nausea with one or another (CoQ10, pyruvic acid for example).
Tinnitus seems to be linked to ions fluxes through membranes, so try to figure out which kind of ions could be involved, it may help to find something that might help.
I am sorry things are so tough for you and such a struggle, David.
Sorry also that I can't offer any practical ideas to help you....as people have been able to do, above.
I can only offer you kind thoughts and hope you will slowly improve at least a little. I hope you find something here to help with these symptoms.
One of the first things I would do is rule out that one of the medications you're taking is not making you worse. For example, I felt absolutely terrible even on the slightest dose of beta blocker which you seem to be taking. Not sure what you are taking it for, I was prescribed it for POTS and while it decreased my heart rate it made everything else much worse.
Hi David. I get intense pressure buildup in my brain too sometimes and being upright makes it worst, I also get over stimulated in my brain which can make me irritable and get nausea with it . I dont know if its all to with having POTS for me or not.
Its the brain symptoms which stop me from walking far or standing usually first, if I ignore this I will collapse and can pass out so I use a wheelchair when I go out.
Ive had much trouble getting the hospital to understand that my walking issues are to do with my brain more so then a leg thing (though at times its my legs suddenly giving way too). I need to spend a lot of time in bed with "stillness" and doing nothing and when I was worst I coulldnt handle light (needed dark room).
when you say you are taking something to manage your heart rate.. do you have POTS too? (or having bouts of fast heart rate?) . No need to answer if you are not well enough to do so but Im wondering if this kind of issue in us usually goes along with POTS.
I have not found anything to help with this head pressure or more like feeling like my head is going to explode from pressure but different to a normal headache thing.
It's like "vision input" when I try to move generate to much information and my brain become sensitized and say me "stop"
It sounds like your seizure threshold is too low, which is common in ME/CFS according to Dr. Cheney.
* Digestive enzymes because I don't digest food properly without them. Not digesting food properly can lead to malnutrition and odd symptoms.
* Lithium orotate - sometimes it helps, other times it darkens my mood.
I should add that Dr. Cheney recommends low dose Klonopin which is a benzo. Benzos can have extremely nasty side effects and some people find them almost impossible to stop taking. Other people do well on low doses of Klonopin and don't have difficulty stopping. I don't know if it's possible to find out which group a person would fall into without trying it.
@PatJ, I had the same experience with lithium initially. I have now learned that in order to tolerate lithium orotate, I need to be on a steady dose of levothyroxine (not too low and not too high) and that the depressed mood response gets better after the first 10 days or so, and I've used low dose bupropion IR (37.5) to help me get through the initial worsening of the mood that comes from the drop of NE and DA that lithium induces in the beginning. Over time the receptors will adjust to the new settings, and one should also titrated up the dose very slowly starting at miniscule doses to give the body time to adjust and not go too high on the dose. I believe that when used correctly, it can be a miracle drug, at least for some of us but it takes some time to get the full benefit.
I can sometimes ride bike even a whole day, but the next day, yes I could do it in view of my muscles, but not in view of my attention (eg), and I would end up in an accident.
Once when I all of a sudden got bad again (worse than before), I could not lift up a bit heavier things for a week. But after a week I could again, despite I got more and more bad. It really felt like a muscle weakness, at first glance, but I could look through it, and it went easily along the imagination of a nerve dysfunction. Of course, I wonder if there can be so much wrong in muscles of pwme.
Well, I do not suffer/ed from muscle pain (instead I had an uncomfortable skin feeling, like the skin being filled with 1cm chewing gum, and very uncomnfortable limb pain). And only if I had drunken some alcohol muscle pain appeared in case that I would consume calcium (in cheese for example) in a time frame 4-22 hours afterwards. This muscle pain then announced that it could get really uncopmfortable, but i could avoid any of that pain of course.
PS: Interestingly five years later the mentioned worsening turned out to be due to a change of nutrition that I started three months earlier. So, now I am slowly improving by reducing manganese, and in addition avoiding sugar, and to some extent reducing fat.
When I am like this (which is often over the past few years), I don't talk to anyone and communicate necessary stuff via text, I remove as much stimulus as possible (no tv, internet, facebook etc), I wear soft ear plugs (the kind that dampen noise not eliminate it all) and I wear sunglasses in the kitchen. I ask my partner to stay away from me so I can get food etc - this eliminates processing what he's doing near me. I find if I cut out enough stimulus then I can still do simple things like feed myself etc.
I ask my partner to stay away from me so I can get food etc - this eliminates processing what he's doing near me. I find if I cut out enough stimulus then I can still do simple things like feed myself etc.
Thank you @Plum for your description. I've asked my wife (many times) for years to please not interrupt me when I'm in the kitchen, but I just can't seem to get through to her how important it is to me. That if I get interrupted, it almost always takes me a long time to recover from that interruption. So I"m curious, does your partner understand your request(s), and does he readily recognize your need to have the space you need to do "complicated" things while in the kitchen? -- Thanks!
I've asked my wife (many times) for years to please not interrupt me when I'm in the kitchen, but I just can't seem to get through to her how important it is to me.
I wonder if, when you have the energy, it would make sense to write something out explaining it. That way you wouldn't have to search for words like you would in a conversation. And then show it to your partner during a moment that isn't tense. I think the important thing would be to make it clear that you're not trying to avoid their love or company (it's hard to tell someone you love 'I really don't want you to interact with me' without causing offense!). The problem isn't them, but it's that your medical condition makes it hard to process the things happening around you. And be sure to say that it's not you, it's your medical conditions. Maybe try to put it in terms that they'd understand--that having to listen to someone else, think, respond, and get food all at the same time is equivalent of being in a noisy nightclub, juggling, having a conversation with Comcast customer service, and filling out your tax forms simultaneously.
Then, figure out a code word or phrase that you can use to remind your partner to give you some space if they forget like "I need space" or "My brain's overloaded." Hopefully your spouse can sort of understand, and try to remember what you need.