24/7 Lightheadedness

[caledonia]

Thank you for your reply and the suggestions.

Adrenal fatigue does skirt the peripheries of my efforts. I had elevated Cortisol on my last check.

I should stress, I don't exactly feel better in the evening-it's more my symptoms tend to be less noticeable-and I think this might also be related to light. My lightheadedness is more 'noticeable' in brighter conditions. I feel better-but also don't.

I'm on B12 injections so my potassium intake is generous and closely monitored. I also supplement magnesium glycinate as well as use magnesium spray and bath in the salts. CoQ10 I've also supplemented regularly and consistently to no avail. I can't tell you how many times I've tried something easily fixable like this and hoped it was the cure! I've not found it yet unfortunately but I am constantly looking and trying...

I have had slightly restless legs at night recently so it might be worth trying to increase my magnesium

I used to have the lightheadedness, dissociative type feeling mentioned on here especially when walking and in the grocery store. I'm trying to remember what made it go away.

The only treatment I did early on was Armour thyroid for autoimmune thyroiditis and a supplement called Oxygarde Forte, which was antioxidants. I wouldn't recommend the supplement now because it has glutathione in it.

Then about 5 years in, I started going to a naturopath, and I took so many things, I couldn't really say what did what. We worked on the gut, sleep, metal chelation (the wrong way), adrenal fatigue, electrolytes, etc.

Then I tried methylation supplements, particularly B12.

Then I got my last mercury filling out, and about a year and a half later had many positive changes such as the autoimmune thyroiditis resolved and I discontinued my medication, I was able to discontinue many of my supplements, my adrenal fatigue got about 50% better.

So somewhere in there (and that covers a lot of territory!) it disappeared.

 

[Booksellercate]

I used to have the lightheadedness, dissociative type feeling mentioned on here especially when walking and in the grocery store. I'm trying to remember what made it go away.

The only treatment I did early on was Armour thyroid for autoimmune thyroiditis and a supplement called Oxygarde Forte, which was antioxidants. I wouldn't recommend the supplement now because it has glutathione in it.

Then about 5 years in, I started going to a naturopath, and I took so many things, I couldn't really say what did what. We worked on the gut, sleep, metal chelation (the wrong way), adrenal fatigue, electrolytes, etc.

Then I tried methylation supplements, particularly B12.

Then I got my last mercury filling out, and about a year and a half later had many positive changes such as the autoimmune thyroiditis resolved and I discontinued my medication, I was able to discontinue many of my supplements, my adrenal fatigue got about 50% better.

So somewhere in there (and that covers a lot of territory!) it disappeared.

If you remember..do let me know!! Although of course it may have been a combination of things, involved in a chain which may have helped.

My case looked like a clear cut B12 deficiency case..until injections haven't made the difference I hoped. There was a brief spell of 1-2 days when my lightheadedness lifted after starting 5mg methylcobalamin supplements. But the headaches I got from taking these were so bad..I had to stop. I stupidly started at three a day - I so seldom react to anything and was inexperienced with supplements. When I gave myself a week's rest, then started again, with one and building up, I never got the break in the clouds like when I first started-and haven't since. I wonder if the initial MB12 started to unblock something or trigger something...but not sure why it hasn't since. My injections are hydroxo but I think I've managed to source methyl injections so perhaps that's my gamechanger.

Your comments about your filling are really interesting. I have metal fillings and a friend warned me about them. He tested and had high levels of mercury in him. He's pinpointed the start of his health decline to the same year he got his fillings. It's something I want to get done but think it's a cosmetic job in the UK and costs a fair bit. Something to do when I am able I think.

 

[Forbin]

My GP has also requested I go for a psychiatric assessment.

Dizziness is a problem for some ME/CFS patients. It would be interesting to know what percentage of patients are affected, but I've never seen a number on that. It's been a significant problem for author Laura Hillenbrand, for instance. It was also my first symptom, as well as my most debilitating one. It didn't matter if I was sitting, standing, or lying down - I always felt like I was in motion - it was just a greater impairment when I had to walk. Large stores also bothered me. The repetitious lighting scheme in the ceilings of such stores didn't help, but I also felt that the "openness" of such high-roofed spaces also contributed to my disorientation.

If someone wants to claim that your dizziness is psychiatric, I would suggest getting a work up at an otological center where they can do specialized tests of your vestibular system and measure how much your balance system is impaired on each side. That should put an end to the question of whether or not it is psychiatric.

When I was tested, 30+ years ago, there weren't all that many such centers around. At the time, someone said that there were only 14 in the world, but, hopefully, that number has increased. Luckily for me, there was one close to where I lived in Southern California.

The otologist there speculated that my problem was being caused by the constriction of the tiny blood vessels in the inner ear, as opposed to, say, orthostatic intolerance. They suggested that this might be allergy-related, so I began taking allergy shots. Unfortunately, this did not help, nor did the suggestion to take niacin to try to dilate the tiny blood vessels.

In the end, none of these treatments helped, but my dizziness did improve by maybe 50% in the forth year of ME. The remainder gradually faded over the next 5 to 6 years, though I would say that I still have some vague residue of it to this day.

In more recent years, I've occasionally had episodes of benign paroxysmal positional vertigo (BPPV). These are much more limited episodes of intense vertigo followed by an unsteadiness that can last up to a couple of weeks, so it doesn't really sound like the kind of dizziness you are experiencing.

Still, I'll just mention that BBPV is the result of microscopic crystals becoming misplaced in the inner ear. The crystals can sometimes be repositioned via a series of head movements called the Epley maneuver. There are videos on how to do this on you tube, but you probably should get instruction from a doctor to make sure it doesn't make you worse.

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I can't prove it, but I have assumed that my dizziness began to improve after I started to treat a possible fungal overgrowth in the gut with the antifungal drug nystatin. Of course, it's common for people to attribute their improvement to whatever treatment they're trying at the time. Still, this was a fairly dramatic improvement which began with great subtlety a little more than a month after I began to take nystatin (and just at the point where I was about to write nystatin off as another failed treatment). It could just be coincidence, but I am obviously very intrigued by the recent focus on the microbiome in ME/CFS.

Anyway, I know how bad such dizziness can be. I wish you the best.

 

[bombsh3ll]

Do you think ME is responsible for your lightheadedness?

Yes I do, based on numerous studies showing reduced blood flow to the brain in ME, subjective reports of the same from many other patients with the same diagnosis, and also the work of Dr Bell whose papers can I think be found on this site.

Altered oscillatory cerebral blood flow velocity and autoregulation in postural tachycardia syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067089/

Orthostatic Cerebral Hypoperfusion Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4754393/

Hi Ryan,

POTS or not in my case, I am sure what is happening to these patients when they are upright fits exactly with what's happening to me.

Has anybody been able to get their cerebral blood flow measured on the NHS?

Outwith specific small research studies and I am not currently aware of any ongoing in the UK, I don't think the NHS measures this, wherever you live. I would also love to know if anyone especially UK based has had this done either private or NHS. It would also be important to measure both lying and upright where there is a postural component to compare the difference.

When you have all normal investigations and a normal or even high BP, this unfortunately leads to symptoms erroneously being labelled as psychiatric

 

[Angelthman]

Hi Booksellercate,
My lightheadedness improves in the evening...

This particular statement stood out for me, since I've been experiencing lightheadedness during the day, ant it gets better in the evenings. I don't have any other significant symptoms. I've been experiencing lightheadedness/sometimes slight nausea for for 5 weeks, so I'm fairly new. I know this is an old post, which I found by Googling my symptoms. But I was wondering if you've recovered, and which treatment helped. Thanks.

 

[godlovesatrier]

I always thought it got better in the evenings due to hormonal changes that occur in the body in the evening.

I also have the detached feeling although the depersonlization isn't as bad as your describing.

What confuses me is how are symptoms can be almost the same as an eds patient but we never encounter the severe dizziness or ligament degradation that eds patients encounter. Maybe it's just another set of genes and if we don't have those genes as faulty we don't get eds. I don't know.

Even so whilst concentrating for hours or dojng any form of excercise as the time goes by my neck and brain get very fatigued. Once I stop and rest I can feel my neck and brain swelling up quite severely. This causes migraine type headaches aches and pains in the occupant nerve and of course dizziness and disorientation. Though I believe the last one is primarily due to fatigue.

It's a weird illness. Wish we knew more about the root causes.

 

[Belgiangirl]

Have you find sth that helps in the mean time?

+5 years ago I had extreme vertigo issues, standing up straight was impossible. It was said to be meunières by a gp that had service that weekend, but he never reported it in my medical file so this information went lost.
He prescribed betahistine for it. It went away, though it came back many times. Now it comes back usually at night: when I turn my head /body the room keeps on turning, and rewinds to turn back ... so you need to put your stomach in place if not vomiting occurs and you are completely losing it ..

Recently my worst muscle weakness is gone - i guess bcs of vit B12 supplementation.
I also had macrocytair anemia but never vit b12 nor vit D shortages, either way my MD and I thought supplementation would be fine. Now it is so high it can't even be measured anymore.

But anyway I suffer from everything you describe now: drowsiness, faint on my legs, extreme weak feeling, disorientated a bit, holding myself upright is a big big issue, i feel like not in my body, so light headed, i also am aware of a bouncing in my head so I think this might be a cardiovascular issue?

It was once so bad I even was taken to the ER for it. My BP seemed to be quiet low there 9/5 so docs thought an IV would fix it. Though I know my pressure has been that low for over years. At the same time my heartbeat used to be very high 80-10 in rest. While last years it seems to have crashed to this amount that doctors or nurses measuring it almost collapse from shock theirselves: 45-50 bpm... 55 at best, 42 at lowest...
I have arhytmias of course, recently went to cardiologist who didn't notice anything but a collapsing vena cava inferior which he reported but not mentioned to me, also he didn't ask to do a follow up later so?

At the same time I have really problems with walking and especially being steady on my feet and keep my equilibrium: walking trough a door or a corridor may pose problems .... walking up or down a stairs to because while i seem athletic: very slim and slender i seem like an elephant unable to control her body and that is how i feel too: like i can't control it...
Btw found in CFS ME research literature that lots of us patients have problems with realising what is their body position in the room... somewhere between sending signals for how to move and receiving them back things go wrong... A doctor indeed noticed when i was very young that i was laying completely diagonal on his table - sth i wasn't aware of ...
Also suffer from heavy and tired legs.
--> When having this i feel like having to spent so much energy into controlling my bodies position / movements / normal gait without falling over or falling over my own feet... that I am mentally confused like hell because it keeps me completely occupied cognitively.
Does this sounds familiair to anyone?

I also have POTS very probably but no cardiologist or doctor that seems to take this serious / never a test has been prescribed to confirm: tilt table test is not done here anymore.

 

[godlovesatrier]

I was thinking about this the other day after having a terrible reaction to fabric conditioner which had all the symptoms of MCAS including hives. MCAS is pretty undiagnosed on the whole I think as it's so hard to diagnose in the first place. But my dizziness only started to get significantly better after I went on a liver and kidney cleanse and increased my water intake (bottled) + ate an exclusion diet with no wheat, no dairy and lactose free. I also excluded caffeine and alcohol prior to that. Once I did these things I saw a lot of significant improvements.
So I am wonder now if many of us also have MCAS and until we change almost all forms of toxic substances in our toiletries and swap out all our intolerant and allergic inducing foods + exclude caffeine, sugar, processed food and alcohol. Only then will we see a benefit towards the dizziness? Assuming it's non viral and caused by a near constant bodily reaction to foreign substances.

I'm also going to try to trial mast cell stabilizers to see if it further calms things down.

 

[kewia]

@Booksellercate,
How you are now?

I'm facing the same issue, at least with dizziness. I got that if I'm to inflame. It sucks that there isn't any common solution to get away from it.

I'm also going to try to trial mast cell stabilizers to see if it further calms things down.

Did you try it in the meantime? If so, did any of these meds help?

 

[godlovesatrier]

Got mixed results with the mast cell stabilizers. For example I took famotidine an hour ago and it made me incredibly sleepy for about thirty minutes. But after fifteen minutes my sore throat and stuffy nose disappeared. So it does work for hayfever. Antihistamines don't work for some reason. Maybe it's not hayfever.

I do think pathogens probably drive what causes all this tbh. I'll be trialling TAF soon.

If you want to trial anti histamines for mcas I suggest ketotifen and famotidine.

I did try 2g vitamin c thismorning and didn't notice anything from that.

Did it help me feel less dizzy? No because my dizziness only got worse when my ebv reactivated. Prior to stress and that I felt a lot better and I have relapse remitting dizziness. It's s feature not a constant.