24/7 Lightheadedness

[Booksellercate]

Hi,

In March 2016 I was in the supermarket. I turned around from an aisle and it was like a switch in my head had been flicked I was suddenly severely lightheaded, spaced out, suffering from depersonalisation.

I have had this lightheadedness for 16 months, without a day's break. It's like being extremely lightheaded, I guess similar to being drunk or feverish. Sometimes I feel very depersonalised and I feel as though I am looking at the world through a wide-angled lens. My perspective seems somehow to have altered, like I am detached from it. This ranges in severity from day-today (I feel worse in bright light, under supermarket lights and often in heat as well) but is always there-standing, sitting and lying. I have had episodes of low blood pressure-but this lightheadedness is always present, even when my blood pressure is fine. Sometimes the lightheadedness makes me feel faint and headachey.

I have mild macrocytosis but the hematologist assured me this wouldn't be responsible for my lightheadedness.

I was B12 deficient last year (stomach issues + 31 years as a vegetarian)-and have been on daily injections for a year. I initially attributed my lightheadedness to the B12 deficiency - I also suffered from dizziness which did more or less clear up after a few months of injections. The lightheadedness remains. I am still not sure if a severe B12 deficiency isn't responsible.

My ferritin, vitamin D and thyroid have all come back fine.

Increasing liquid and salt and using compression stockings hasn't helped.

Does anybody else have this? What do you attribute it to? I guess it's a neurological symptom but wondering about root cause and possible treatment/management.

Thanks for sharing thoughts and suggestions!

 

[taniaaust1]

Hi, u say it happened when u were turning and suddenly, this makes me think it may be your neck.

I didnt know it til it was fixed for me but my "constant" dizziness with lightheadedness was cause my neck was out. A good chiropractor fixed it.

 

[bombsh3ll]

Hi Booksellercate,

I too have this as a chronic daily symptom. I can relate exactly to what you are describing - like being about to faint or like the start of the flu except it never actually comes on. For me there is a definite postural component, I feel best lying down, or at least sitting with my legs elevated. I cannot stand for more than a few minutes. Mine started after I tried really hard to blow up what I thought was a balloon - but actually turned out to be a water bomb. It was as if something went in my head, and I feel as if the blood flow to my brain has been very poor since.

Many times on home testing I am positive for POTS, but not consistently, and my tilt test was reported normal even though my BP went up to the 170/110's when I was tilted up. I couldn't see the heart monitor as it was behind me, but I believe I have POTS or a similar form of orthostatic intolerance.

I too have not had much luck with water, salt and compression hose although I continue to use them. I found licorice root capsules helpful for several months then the effect waned. I have also had all the standard blood tests, 24 hour ECG, 24 hour BP monitor and brain MRI, all normal.

Studies have consistently shown poor blood flow to the brain in ME patients. This cannot be seen on a normal MRI, a SPECT scan or doppler is needed to measure blood flow.

I don't have the answer, but I would also love to know WHY IS MY BRAIN SO STARVED OF BLOOD FLOW DESPITE A NORMAL BLOOD PRESSURE??? And what can I do about it?

 

[Booksellercate]

Hi, u say it happened when u were turning and suddenly, this makes me think it may be your neck.

I didnt know it til it was fixed for me but my "constant" dizziness with lightheadedness was cause my neck was out. A good chiropractor fixed it.

Thanks for your reply.

I turned my body, rather than my neck and sort of looked up (I was looking lower down).

But you're right, I have wondered about my neck - in 2015 I had frequent bouts of neck pain -which I attributed to poor sleeping habits or a bad pillow-I spent a small fortune on various pillows. The neck pain has come and gone (it's currently coming!) since 2015. Sometimes my neck crunches. I have talked to a couple of friends about my neck causing this recently (to be honest, it only occurred to me recently; amazing what you can miss right in front of your eyes) and they were very dismissive.

An MRI found cervical spondylosis but I was told my spine was fine and the spondylosis wouldn't be causing symptoms.

I should have mentioned that at the same time as my lightheadedness, I also developed an overall sort of weakness, particularly noticeable down the leftside of my body-I don't know if this is directly related, although the symptoms appeared more or less together.

Either way, I guess a Chiropractor is worth looking into with my recurring neck pain.

 

[Booksellercate]

Hi Booksellercate,

I too have this as a chronic daily symptom. I can relate exactly to what you are describing - like being about to faint or like the start of the flu except it never actually comes on. For me there is a definite postural component, I feel best lying down, or at least sitting with my legs elevated. I cannot stand for more than a few minutes. Mine started after I tried really hard to blow up what I thought was a balloon - but actually turned out to be a water bomb. It was as if something went in my head, and I feel as if the blood flow to my brain has been very poor since.

Many times on home testing I am positive for POTS, but not consistently, and my tilt test was reported normal even though my BP went up to the 170/110's when I was tilted up. I couldn't see the heart monitor as it was behind me, but I believe I have POTS or a similar form of orthostatic intolerance.

I too have not had much luck with water, salt and compression hose although I continue to use them. I found licorice root capsules helpful for several months then the effect waned. I have also had all the standard blood tests, 24 hour ECG, 24 hour BP monitor and brain MRI, all normal.

Studies have consistently shown poor blood flow to the brain in ME patients. This cannot be seen on a normal MRI, a SPECT scan or doppler is needed to measure blood flow.

I don't have the answer, but I would also love to know WHY IS MY BRAIN SO STARVED OF BLOOD FLOW DESPITE A NORMAL BLOOD PRESSURE??? And what can I do about it?

Hi,

It's incredibly debilitating isn't it. The feeling like something going in your head-that's it. How long have you been this way?

I haven't yet been diagnosed with ME.

I too often feel worse moving around. It's coupled with feeling unsteady on my feet and muscle weakness, especially in my legs.

I have caught myself with really low blood pressure but the lightheadedness remains regardless of my blood pressure.

I tried testing the oxygen-saturation of my blood but it seemed more or less OK.

Have you had your blood flow measured with a SPECT scan or doppler?

I have wondered if it's something to do with the nerves which control the dilation and expansion of the capillaries not working properly.

I've not tried licorice root-although you're the second person to recommend this. What exactly does the licorice root do? Perhaps that's a clue if it worked (at least temporarily).

The poster above you mentioned the neck (trapped nerve/blood vessel) being a possibility to rule out and that seems sensible. I've had neck pain on and off since 2015 so...

 

[bombsh3ll]

I agree there is probably an issue with cerebral autoregulation ie vessels in the brain not constricting/dilating as they should, and I also think a low blood volume and cardiac output are involved.

Licorice root has a similar effect to fludrocortisone but works via a slightly different mechanism, ie it conserves salt and water to boost blood volume. I feel that I am chronically volume depleted - always thirsty, dry eyes and mouth, cold hands and feet.

You then end up with a vicious cycle with secondary deconditioning as you cannot be upright or active.

My lightheadedness improves in the evening, when my blood volume is at its highest, and I feel the last couple of hours of the day are the only time I have any real quality of life.

I did have a chiropractic adjustment to my neck earlier this year in the hope this may improve cerebral blood flow, but it was painful, expensive and made no difference. I've been ill for 3 years.

I've not had any tests to actually measure blood flow - getting even the basics done on the NHS is an uphill struggle - it is just a strong suspicion based on feeling presyncopal that cerebral blood flow is impaired.

Do you also experience symptoms of volume depletion, and/or improvement towards the evening?

 

[Booksellercate]

I agree there is probably an issue with cerebral autoregulation ie vessels in the brain not constricting/dilating as they should, and I also think a low blood volume and cardiac output are involved.

Licorice root has a similar effect to fludrocortisone but works via a slightly different mechanism, ie it conserves salt and water to boost blood volume. I feel that I am chronically volume depleted - always thirsty, dry eyes and mouth, cold hands and feet.

You then end up with a vicious cycle with secondary deconditioning as you cannot be upright or active.

My lightheadedness improves in the evening, when my blood volume is at its highest, and I feel the last couple of hours of the day are the only time I have any real quality of life.

I did have a chiropractic adjustment to my neck earlier this year in the hope this may improve cerebral blood flow, but it was painful, expensive and made no difference. I've been ill for 3 years.

I've not had any tests to actually measure blood flow - getting even the basics done on the NHS is an uphill struggle - it is just a strong suspicion based on feeling presyncopal that cerebral blood flow is impaired.

Do you also experience symptoms of volume depletion, and/or improvement towards the evening?

Your explanation sounds logical.

This strange lightheadedness/pre-synope feeling is the main cause of my being housebound. I realised quite early on I needed a wheelchair.

Have you been diagnosed with ME? Do you find it gets worse under some conditions eg supermarket lighting, bright lights?

I agree-I feel better in the evening. Not right, but better. I don't know much about blood volume-I'm going to look into this. As I have macrocytosis and had low B12 I attributed this symptom to B12 deficiency and have only started to look wider. Many of those with pernicious anemia or B12 deficiency report this lightheadedness-I guess it's a result of nerve damage they suffer. A few I've spoken to took 2-3 years of quite aggressive B12 treatment to resolve this symptom -which is one of the reasons I keep up with the injections. A desperate hope, I guess.

I have an autonomic nervous system assessment at Kings College Hospital in London next month. I don't know if it'll pick up anything. I understand about getting any sort of investigation on the NHS. My GP has also requested I go for a psychiatric assessment.

Do you have any sinus issues? I know a couple of cases of lightheadedness and dizziness being a result of sinus issues. Long shot but when you get desperate, nothing is too small to rule out.

I'm sorry that you're suffering from this too.

 

[caledonia]

If you're feeling better in the evening, that's a symptom of adrenal fatigue. If you have adrenal fatigue you may be losing electrolytes and need to replace them. That's magnesium, potassium and sodium. Replacing just sodium wouldn't be enough.

It may take some tweaking to get the combination. My doc had me start with potassium, then magnesium, then sodium. It took about a month because I need a massive amount of magnesium. There is a sweet spot for each one where you will feel the best. For magnesium you can gradually increase until you get diarrhea, then back off a bit.

I use powdered potassium gluconate, and magnesium glycinate and then sea salt. All dissolved in water and drunk four times a day.

If you have other electrolyte deficiency symptoms like heart palpitations, muscle twitches or cramps, insomnia and/or constipation, that's another clue.

If that doesn't sound familiar, another thing you can try is CoQ10, which helped my brain fog considerably.

 

[Booksellercate]

If you're feeling better in the evening, that's a symptom of adrenal fatigue. If you have adrenal fatigue you may be losing electrolytes and need to replace them. That's magnesium, potassium and sodium. Replacing just sodium wouldn't be enough.

It may take some tweaking to get the combination. My doc had me start with potassium, then magnesium, then sodium. It took about a month because I need a massive amount of magnesium. There is a sweet spot for each one where you will feel the best. For magnesium you can gradually increase until you get diarrhea, then back off a bit.

I use powdered potassium gluconate, and magnesium glycinate and then sea salt. All dissolved in water and drunk four times a day.

If you have other electrolyte deficiency symptoms like heart palpitations, muscle twitches or cramps, insomnia and/or constipation, that's another clue.

If that doesn't sound familiar, another thing you can try is CoQ10, which helped my brain fog considerably.

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

 

[jimells]

Many times on home testing I am positive for POTS, but not consistently, and my tilt test was reported normal even though my BP went up to the 170/110's when I was tilted up.

always thirsty, dry eyes and mouth, cold hands and feet.

I don't have the answer, but I would also love to know WHY IS MY BRAIN SO STARVED OF BLOOD FLOW DESPITE A NORMAL BLOOD PRESSURE??? And what can I do about it?

I am intimately familiar with these symptoms, and for me the cold hands and feet are key symptoms that give away the game. The problem is too much epinephrine/norepinephrine, which causes vasoconstriction in the skin, gut, kidney, and brain. I have found low dose trazodone to be an effective adrenergic alpha receptor blocker. For me, it reverses the cold and clammy hands and feet and helps my brain work a little better.

I was able to successfully manage my hyperadrenergic POTS with trazodone and atenolol (an adrenergic beta receptor blocker) for a year and a half. Then this past spring I developed bad itching and frequent hyperadrenergic POTS crashes. Sometimes it felt like I was dying, even though objectively I knew that was extremely unlikely, given that my blood pressure and pulse were not low.

A few times the episodes started with a sudden drop in body temperature, sometimes as low as 95.5 F - the border of mild hypothermia. These "cold flashes" were immediately followed by a flood of epinephrine/norepinephrine and all the usual hyperadrenergic symptoms, including a lot of shivering.

I started on zyrtec for the itching. And it stopped the hyperadrenergic episodes as well as the generalized itching. After studying the literature on mast cells, including studies that explore the role of mast cells in POTS and IBS, it is obvious to me that I am having mast cell issues. It appears that even standing up was causing itching, i.e., standing up causes my mast cells to activate.

I speculate that simply waking up causes mast cell activation, which is further aggravated by getting out of bed. No wonder we feel so awful in the morning. On the recent CDC talk by Dr Naviaux, he discussed how the Cell Danger Response releases extracellular ATP to alert nearby cells. One of the cell types that respond to this extracellular ATP is -- mast cells.

(I wrote some other posts recently that reference the studies I found most useful. I'm too lazy to repeat all that here or to link to my other posts.)

 

[bombsh3ll]

If you're feeling better in the evening, that's a symptom of adrenal fatigue. If you have adrenal fatigue you may be losing electrolytes and need to replace them. That's magnesium, potassium and sodium. Replacing just sodium wouldn't be enough.

I also supplement magnesium and potassium - magnesium has helped my lazy bowels to move. I've had my cortisol checked twice - high, and ACTH stim test - normal. My aldosterone was very low though.

I thought fludrocortisone would be a match made in heaven for me based on low aldosterone but it gave me severe headaches, palpitations and non-psychogenic sense of anxiety, and also didn't help my orthostatic intolerance (otherwise I'd have put up with the side effects gladly)

If you have other electrolyte deficiency symptoms like heart palpitations, muscle twitches or cramps, insomnia and/or constipation, that's another clue.

Yes to all of the above. When I get increased palpitations I know I need to increase my potassium.

I use powdered potassium gluconate

How does this taste? I've recently tried potassium bicarb and it is FOUL! i normally use lo-salt which is half sodium chloride half potassium chloride.

Have you been diagnosed with ME? Do you find it gets worse under some conditions eg supermarket lighting, bright lights?

Yes I am diagnosed ME/CFS, I prefer the older term ME as it is a more accurate representation of my illness ie primarily neurological, I do not just have "chronic fatigue".

I am not sure if my lightheadedness gets worse in bright lights, but I am generally very sensitive to light and noise. I no longer go to supermarkets - thank God for internet shopping!

I also take B12 1mg sublingually every day, and I briefly tried Co-Q10 but stopped as no difference - I still have most of a bottle of this so may try them again given it has helped someone with a similar problem.

 

[bombsh3ll]

The problem is too much epinephrine/norepinephrine, which causes vasoconstriction in the skin, gut, kidney, and brain.

Thanks, I definitely think I have an excess of one or both of these (I have had a phaeochromocytoma ruled out by 24 hour urine collection). I wish the vasoconstriction would kindly extend to my kidneys so I didn't pee out everything I drink!

I have found low dose trazodone to be an effective adrenergic alpha receptor blocker.

That's really interesting and not one that I've tried. I did however have a very bad experience with a tiny dose of another alpha blocker doxazosin, as my blood pressure had been quite high. This absolutely floored me and I had to lie flat with my legs up for several hours.

I have no itching or skin rashes so do not think I am affected by mast cell dysfunction, but did try the UK equivalent of Zyrtek just because many with POTS seemed to benefit, but not me.

I think that in my case, rather than a primary hyperadrenergic state, the sympathetic overactivity is an attempt to compensate for hypovolaemia - just like someone who has lost 20-25% of their blood volume acutely in a car accident, who would be tachycardic, initially slightly hypertensive, cold pale and clammy. That's the default state for me and I can't seem to get my blood volume up to switch it off.

 

[Booksellercate]

Yes I am diagnosed ME/CFS, I prefer the older term ME as it is a more accurate representation of my illness ie primarily neurological, I do not just have "chronic fatigue".

I am not sure if my lightheadedness gets worse in bright lights, but I am generally very sensitive to light and noise. I no longer go to supermarkets - thank God for internet shopping!

I also take B12 1mg sublingually every day, and I briefly tried Co-Q10 but stopped as no difference - I still have most of a bottle of this so may try them again given it has helped someone with a similar problem.

Do you think ME is responsible for your lightheadedness?

 

[BFitz89]

ME is definitely the reason for my lightheadedness. Without a doubt.

I also hate supermarkets now as the lighting makes the dissociative feeling even stronger. I've noticed to my brain fog is considerably less noticeable when it's gray and overcast. Or at least I perceive it to be.

 

[Booksellercate]

ME is definitely the reason for my lightheadedness. Without a doubt.

I also hate supermarkets now as the lighting makes the dissociative feeling even stronger. I've noticed to my brain fog is considerably less noticeable when it's gray and overcast. Or at least I perceive it to be.

This tallies with my experience-although I haven't been diagnosed with ME at least not yet.

Did your lightheadedness begin suddenly or after a particular incident?

 

[ryan31337]

Many times on home testing I am positive for POTS, but not consistently, and my tilt test was reported normal even though my BP went up to the 170/110's when I was tilted up. I couldn't see the heart monitor as it was behind me, but I believe I have POTS or a similar form of orthostatic intolerance.
....
I don't have the answer, but I would also love to know WHY IS MY BRAIN SO STARVED OF BLOOD FLOW DESPITE A NORMAL BLOOD PRESSURE??? And what can I do about it?

Hi @bombsh3ll,

You may find these publications interesting:

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

This is very much applicable to me, I had enormous BP oscillation on tilt. The oscillations and brief but exaggerated initial orthostatic hypotension kick off problems with cerebral blood flow velocity, which are then exacerbated by the following hypernea/hypocapnia in some patients.

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

This review is also interesting because it defines OCHO patients with similarly decreased CBFv despite stable BP, HR & respiration - this excludes POTS etc.

So in summary....its very complex!

Ryan

 

[Booksellercate]

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

 

[jimells]

I have no itching or skin rashes so do not think I am affected by mast cell dysfunction

My itching symptoms really only started about six months ago. According to Afrin 2016 only half of mast cell patients have rashes, and 60% have itching. This is a real problem for getting a correct diagnosis, because doctors won't even consider mast cell disease without the hallmark symptom of hives, even when anti-histamines prove to be effective. This is the situation I am dealing with.

 

[BFitz89]

This tallies with my experience-although I haven't been diagnosed with ME at least not yet.

Did your lightheadedness begin suddenly or after a particular incident?

Oh, I'm like you - I haven't been diagnosed with ME. Probably never will. I don't have medical insurance and can't afford all the tests. I put myself into debt before falling ill so I'm screwed ha

Mine started suddenly when I came down with whatever is wrong with me. I had mono in November and I was dizzy/ malaise with that, but within two weeks was normal. For whatever reason two and a half months later I fell ill with what I can only imagine is CFS. Leg weakness, lightheadedness and unrelenting brainfog, plus a messed up gut and in the last couple of months tinnitus, too. I fulfill the criteria sadly.

 

[caledonia]

Yes to all of the above. When I get increased palpitations I know I need to increase my potassium.

How does this taste? I've recently tried potassium bicarb and it is FOUL! i normally use lo-salt which is half sodium chloride half potassium chloride.

I'm taking such a small amount now I don't even notice it. I used to take 3000mg and I don't really remember any bad taste. I would say it's pretty neutral tasting. I'm using Now brand potassium gluconate.