ET causing dizziness?

[Joey71]

Why does ET cause dizziness? I have had ET for about 10 years now, taking hydroxycarbamide and anagrelide during this time. Developed vertigo a few weeks ago out of the blue. Having bloods done this week and telephone consultation next week. Anybody else have this?

[ksos]

Hi -- I've had ET for going on three years and have had a couple bouts of vertigo. I don't know if the ET or HU caused it -- although I've never had it before. Each time, it has come out of no where, always in the evening and lasting through the night (can't sleep) and fades away in the morning -- thank goodness. It's awful. The only pattern I've been able to find is that each time it's happened I've been overly tired -- usually having pushed through the ongoing fatigue to get something done. I'd love to know if others have experienced it, and any ideas about causation, treatment, etc. Wish I could be more help Kim

[Joey71 in reply to ksos]

Thanks Kim. Mine happens when I lie down- the room spins, and when I get back up again. It's just a weird sensation!

[Wyebird in reply to ksos]

Maybe you need water and don’t realise it. I know I’ve downed half pint of water nd feel it lift.

[flfair]

Hi, have a look at vitamin B12-deficiency.

vitaminb12first.co.uk/vitam...

[Joey71 in reply to flfair]

Thank you, I'll have a look.

[Joey71 in reply to Joey71]

Lots of those symptoms/feelings fit me but I put it down to having had a stroke 10 years ago (that's how ET was discovered). I will ask my consultant when I have telephone consultation next week.

[flfair in reply to Joey71]

Are you taking any vitamins minerals supplements? have you had your thyroid tested?

[Peter18]

I've been on hydroxy for two years. I've had occasional dizziness which I have, rightly or wrongly, associated with the notorious mental 'fug' which I get more often and which is often mentioned in these posts. For what it's worth, the best period to date since my diagnosis was in Lent this year when I eliminated sugar, cake, biscuits etc from my diet; I also drank water only for the duration and lost about 12 pounds. Fug, aches, dizziness and much of the tiredness seemed to fade away.

Very best wishes,

Peter

[paintbox in reply to Peter18]

That's very interesting Peter, isn't it!

I used to suffer a lot with dizziness before and just after diagnosis and since then I've tried to always ensure I'm hydrated (something I was never good at previously teaching & stuck in class). I have low blood pressure which I've always been told is very good to have - which I'd alway counter with, "not when you feel dizzy or faint half the time".

Drinking plenty of water has made a huge difference & I rarely get bouts of dizziness anymore. I've long tried to avoid sugar or refined foods too, except for low sugar home baking or v dark chocolate then you don't want as much 👍🏻🤞🏻

Hope you find relief Joey 71 it's a horrible sensation.

[Joey71 in reply to paintbox]

Thank you. It is a horrible sensation. Will keep drinking the water!

[paintbox in reply to Joey71]

Really hope it makes an obvious difference soon 🤗

[Wyebird in reply to paintbox]

Water for me also and you are not even feeling thirsty

[Scrollernut in reply to paintbox]

Interesting about low blood pressure. I have slightly high pressure. I thought maybe that’s causing dizziness. Seeing GP later in summer. Yeah, my hematologist tells me as well......more water. I’m floating away! ☹️

[paintbox in reply to Scrollernut]

Also I realised last night that by increasing water intact my sodium levels were quite low so making sure these don't dip from over hydration is important also I imagine.

[Joey71 in reply to Peter18]

Thanks Peter. Weirdly, I have cut down sugar and trying to drink more water but that's when it started! Who knows with this!

[Hidden]

I thought my dizziness was caused by Stress and anxiety? Not ET. Maybe dehydration and not enough deep breathing to relax the sympathetic nervous system.

[Minu68 in reply to Hidden]

My dizziness was attributed to my anxiety for a few years. I've overcome it,haven't had anxiety unnecessarily for over four years now, but I still get dizzy spells. I practice mindfulnes, that and other strategies helped overcome my anxiety. Was diagnosed with ET jak2 only 4 months ago and am now on hydroxy and aspirin. They think I've had ET for at least 10 years, having looked back at my records. It was the same with nightsweats, which I've also had for many years, put down to anxiety, then when that was no longer an issue, to possibly starting menopause.

So I , having learnt so much on this fab forum, now believe it is due to the ET. I think I've had no real noticeable change so far since starting treatment, keeping hydrated and cutting out sugar as much as possible. I've not had vertigo....that sounds horrid!!

[Joey71 in reply to Minu68]

Thanks for replying. It's really hard sometimes to know what's causing all these weird symptoms we get!

[Scrollernut in reply to Minu68]

WOW I could have written your post! Guess there’s some comfort in knowing others go thru the same thing😍😍😍 Doesn’t make it better but assurance we can survive it!

[Joey71 in reply to Scrollernut]

Yes, it does feel better when you know it's not just you!

[lizzziep]

I get the same, when I lay down it's as though I'm drunk! (I should be so lucky!) Previously it's been water behind my ear drum that's caused it, but since lockdown I haven't been swimming, although I do wash my hair a lot. I haven't been able to see the practice nurse at the doctors for her to check my ears but I've been getting it for the past couple of weeks. It is very slowly improving, it is worse when I lay on my left side, on my right side it doesn't happen straight away. Laying flat it's not as bad as on my sides. So it is possibly my ears again but can't find out for sure at the moment. It is a very weird sensation.

[Joey71 in reply to lizzziep]

It is a weird sensation isn't it! Hopefully I'll get some answers soon.

[Bield in reply to lizzziep]

Try putting some vicks just behind your earlobe at the bottom. If the crystals are loose it draws them out. My daughter and granddaughter and very troubled with vertigo and this work for them.

[Joey71 in reply to Bield]

Thank you, I will try that.

[lizzziep in reply to Bield]

That's worth a try!

Thank you

[Scrollernut]

Wish doc could fine a reason for dizziness! Making me nuts! But guess it’s just a side effect of hydrea. I really need to be careful getting up or turning around slowly.

[Joey71 in reply to Scrollernut]

Yes I am far more careful now- just in case!

[JT_Marlin]

So sorry to hear that Joey. I had a nasty bout of vertigo while walking to work - could barely stand up let alone walk straight. Turned out I was having a TIA (ministroke) brain scan showed. This is what ultimately led to blood testing showing JAK2+ and then a PV diagnosis shortly thereafter. Ive heard of folks having lots of TIAs some of which they dont even know they’re having. Not sure if thats helpful, but maybe you can get brain scan to rule that out and make sure there arent a lot of clots floating around.

[Joey71 in reply to JT_Marlin]

Thanks for your reply. I had lots of TIA's before my stroke which I didnt realise were TIA's at the time. This doesn't feel like that but I will get it checked if it continues.

[Dovme]

I have had periods of feeling lightheaded for several years. It seems worse and prolonged when l am stressed. I find breathing excercises really help. It’s one of those things the more you worry abt it the more it happens During Stress we don’t breath well.

I would check with your doctor - it seems a common issue with many medical conditions

[Joey71 in reply to Dovme]

Thank you, I will get it checked out.

[Anag]

Hi Joey,

Im only on Anagrelid. Once starting it, I got weakness, brain fog, forgetfulness and dizziness and would also lose my balance when getting up, lying down, or on stairs. I’ve had 6 TIAs. My third led to my diagnosis with 909,000 thrombos.

Since cleaning up my body by avoiding GMOs, gluten, milk products, night shade veggies, other intolerances, got amalgam out, take supplements, where I’m deficient, drinking more water, regularly detoxing my liver, the dizziness, but also all autoimmune problems stopped. I also have my strength and brain back.

I am sure all of this helped get rid of my ailments and I hope to get my body to the point it can fight ET on its own, by balancing itself out. 😁 Hope is a good leader!

[Joey71 in reply to Anag]

Thanks for your reply Anag. I take anagrelide and hydroxycarbamide but I've taken them both for years and not had dizziness so just trying to work out - why now!?

[Jennytheb]

Hi, I have had this and it was diagnosed as Menieriere's disease? I take betahistine dihydrocarbide for this and touch wood all is fine. However I do find that if I get too tired I feel really awful so not sure if I do have Men. dis. or it is just ET which was diagnosed for me 5 years ago and perhaps have had for a very long time? Will ask consultant when I have tele call appt. next week and report back.

[Joey71 in reply to Jennytheb]

Thank you Jenny, I will too!

[Hidden]

Hi, I have E.T. and vertigo, my G.P. referred me to an E.N.T. specialist, he diagnosed that the crystals in my ear were displaced, causing vertigo. He sent me to an osteopath who specialises in this field. Not a very pleasant treatment, but it worked!

Unfortunately I had a fall, which I think caused some crystals to move and the vertigo to return slightly, but unless it deteriorates I can live with it!

If you search on the internet for ‘crystals in the ear’ there is lots of info.

[Joey71 in reply to Hidden]

Hi, I read up on that and once I've finished taking the tablets from my GP I will phone again. I do feel like it's about moving my head in certain ways, and I feel like my eyes are moving around to try and catch up with my brain. Did you have to do some strange exercises/lying down/sitting back up?

[Hidden in reply to Joey71]

Yes, the treatment with the osteopath started with different maneuvers causing vertigo, after several sessions a lamp was used making rotating shapes on the wall (can’t remember the name). All these methods worked, until I fell and must have dislodged a few.

[Joey71 in reply to Hidden]

That's really interesting and I do feel like that's maybe what is going on with me. I'll speak to the GP again. Thank you

[Hidden in reply to Joey71]

I should say that I live in France, where the health care is excellent, I no longer know what they offer in the U.K. but you could start by asking your GP that you want to see an ENT specialist.

[Wyebird]

Hi, I’m on both hu and anagrelide. Originally on 7 anagrelide . Plus 14 hu. Then increased to 14 anagrelide plus hu. Initially fine the after about 3 weeks I was light headed. Reduced back to 7 a week symptoms went over night. Had to increase to 10 abweek plus hu to lower platelets

Platelets became stable and below 400 just before Christmas. Heamo thrilled but I asked why do I feel so spaced Out as I thought it was high platelets. We reduced The anagrelide by 1 A week and replaced with 1 hu ‘spaced out’ feeling almost non existent.

So I think it’s you anagrelide.

Good luck

[Joey71 in reply to Wyebird]

Unfortunately for me, it's the anagrelide that causes my platelets to drop. Hydroxycarbamide alone didn't work. Thanks for your reply.

[Anag in reply to Wyebird]

Hi Wyebird,

I was very light headed on 6 Anagrelide and also had Massive heart pounding. At 4 there was a bit of pounding. At 3 it stopped and my balance and brain are clean. When I think of 7 or 14, I think id kick the bucket! Luckily, you don’t have my sensitivity to it.

Although I have had 6 TIAs (last one 1.5 years ago) we keep my thrombos around 700. I fluctuate between 450 and 920. I can’t take HU because I have an inborn anaemia and no Interferon because I have Hashimoto Thyroiditis. Only possibility is Anagrelide. Other doctors wanted my thrombos to be below 300. I don’t know why? Do you really have to be below 400 and take so much A and HU?

[Wyebird in reply to Anag]

Hi, my body tells me when either my platelets are up or heamoglobin is down. I can function Normally with platelets Around 400 and heamoglobin 11 ( think of a car gear box rarely gear 6 with these levels 4/5) with platelets around 400 and heamoglobin 96-102 I exist in gears 3/4. Sometimes 2/3.

Last week after a drop to Platelets 370 😁I’ve dropped 1 hu. a week. I get a FBC in 3 weeks hoping platelets are the same and a rise in heamoglobin.

If my platelets were your level I would be sofa bound.

How do you function?

[Anag in reply to Wyebird]

The autoimmune paleo diet, minus intolerant foods like Chicken/turkey ☹️, eggs 😖, cocoa 😩 have solved so many other problems I had!! Therefore, I’m better off physically and emotionally.

As long as I keep my blood thin, I’m fine. I take a 50mg baby’s aspirin daily plus 3x 60mg Gingko a day.

My hemoglobin has always been between 9,3-10,5. I was born with Beta Thalassemia anaemia typical of Greeks. I keep my blood count nicer with one small organic liver steak a week. But I do think it may be raising my thrombos a bit. I know I can breath better and have more stamina because of better oxygen transport.

CoQ10 is an absolute life saver! I take the Mount Naturals CoQ10, Hawthorne complex. I also take magnesium, DHEA as adrenal support, Vit C, Vit D: 7-8,000 IUs daily, else I’m deficient. (That keeps me at 65-70).

I did a 5 day water fast which was absolutely increadible for my energy level!! That cleaned out old cells and old useless auto-immune cells that are running around like ghosts after attacking virus cells from yesteryear! 😁 I was weak on the fifth day. The sixth, I started eating and on the seventh and thereafter came a surge of incredible energy, like a tree that’s been well pruned explodes with new life.

I had one tough year Feb 2019 To April 2020 after removing all my amalgams. About 25 ancient fillings on 11 teeth. The mercury poisoned me despite all the detox attempts to reduce the poisoning during the procedure. It was brutal. I’ve now recovered and still doing metal detox. I’ve still high levels of aluminium, mercury, cadmium, lead and silver.

I try to keep my liver (bile) moving by drinking lemon water with every meal. My liver’s been through a lot With years of pain killer for Auto, Ski and neck accidents. Anagrelide is famous for taxing the liver too. There are so many environmental influences that fill up our bodies. At some point, our bucket overflows and we get sick and sicker. By taking action on so many fronts, I’m trying to turn back the time and reset my system. I thought I could do that in 3-4 years and I’ve come a long way. It’s been 2.7 years and it looks that I will need a few more to reach my goal. My thyroid meds are now -60%. So amazing!!

[Wyebird in reply to Anag]

Oh my goodness . You regime is amazing. I’d love to listen to to What a Haematologist and various scientists say to your regime. I’m convinced various vitamins herbs and minerals etc help us. It’s finding the ones that suit individuals. I do wish funding for such research was available.

You deserve to have success.

Long may it continue

[Anag in reply to Wyebird]

Thank you so much! 4 haemos didn’t want to hear a word about any of my alternative thoughts. Well, the fifth one did and I’ve remained with her. She knows a bit about foods, vitamins, etc and insists that they made a big difference in our illness. She supports the fact that I stay away from foods with high vit K content: broccoli, dark greens (I loooove all that stuff). No sweet potatoes or papaya. 😢

I was in Korea last summer and discovered the amazing perilla leaves! I feasted on them for some days and my thrombos went from 600 to 909!

I finally started on turmeric 6 weeks ago. Arthritis in the hips is now painless and my body is stronger. I also sleep better. It detoxes really well. I have to make sure I Take it at least an hour before or 3hrs after My Anagrelide, since it could wipe out my meds before they have a chance to work. My haemo is weird of turmeric and said that many don’t take it properly. I know that when and how and in which combination that supplements are taken is extremely important. Also that they must be natural and not synthetic!

That you for your good wishes! Have a great weekend.

[Wyebird in reply to Anag]

I stopped taking turmeric I had huge bruises. Not sure if it was a coincidence or not. I’ll soon find out if the red palm oil I’m taking has Brigitte my platelet count. I’ve been on it about 6 weeks. This last week I’m having fantastic sleeps-5 hours undisturbed so brilliant for me. I wonder if the oil is contributing to that.

[Anag in reply to Wyebird]

Turmeric thin blood! We need to balance everything. I take less aspirin and more ginkgo. If I see any bruising or I start getting little broken veins in my hands, I cut out a bit of the ginkgo. It’s just hard if you’re platelets go up and doing.

I’ll look into the red palm oil. Hm... 🙂

[Wyebird in reply to Anag]

Let me know what you think.

[Anag in reply to Wyebird]

Hi Wyebird,

From what I’ve researched, this oil is good and very similar In health benefits to coconut oil and olive oil. Olive oil is still better, since it have long chain fatty acids that are even more beneficial to health. I get my Organic oil Directly from a trusted farm in Greece (51liters yearly shipped to me). We Greeks consume on the average 27liters yearly per person.

What bothers me about the palm oil is that it comes from Palm trees and at the moment 1/2 of the rainforests in Malaysia and Indonesia have been burned down to plant palm trees for palm oil consumption. It is a multi billion dollar business, there is absolutely no sustainability, extreme corruption, even when there are award labels on the product. It is the cheapest oil on the market Right now. The Orang-Utan population has almost been completely anhialated through beating to death and shooting in these regions. These apes have no more home or food and eat the last thing available, baby palms. It’s horrific.

I’ve been following this for the past 10 years. I have basically boycotted anything that has this oil in it. It is widely used in cosmetics, chocolate and other foods like peanut butter to keep a good consistency. It’s appearing everywhere. Of course there is the palm oil and the red palm oil (from the fruit). But both come from the same tree. It is even added to biofuel to heat homes and run cars.

It is so hard to do the right thing today, whether it’s for our health or food choices. We have to become experts in everything. I sometimes get tired and sad.

If you are using this for brain function, it’s best to use coconut oil. If you don’t like the taste, you can order fractionated coconut oil, which is no longer white. It is pure ketones (a type of fat) which is pure brain food. The fats that we eat usually eat are transformed by our bodies into ketones, which in this form are readily available to our brain for food. The coconut oil doesn’t have to be transformed, since it is already ketones. 🙂 Apparently, It’s useful to help slow down or even stop dementia.

Hope to have helped. I’m sorry if my answer is a bit heavy.

Anag

[Wyebird in reply to Anag]

Hi, it twigged with me and I agree with you. I was absolutely horrified when I realised the source. I’ve watched the devastation on Tv and wondered why????

Now here I am taking the darn stuff. Well, rest assured I’m not buying any more. The rainforests need their land more than I need palm oil. I stayed in the Peruvian jungle a few years ago and saw first hand the destruction of the land in order to farm.

Totally unnecessary.

Thanks xx

[Anag in reply to Wyebird]

Im so glad you think this way. Nevertheless, foods that are therapeutic should be available to those who need them. The problem is the abuse for absolute profit regardless of devastation. Human greed has no boundaries sometimes.

I don’t know if platelets respond to olive oil. My family of 3 goes Through 1 liter a week. My platelets haven’t gone down because of it. Our overall health is better though. Please be careful. There is so much corruption with the olive oils. Better off with greek. Half the Italian Oils don’t come from Italy. That’s a fact. Anything under 6£ a liter is not ok. Greek farmers amongst themselves sell it for 5£ a liter unbottled. How Can a supermarket sell it for less?? It should be in a dark bottle (never clear) it must say extra virgin, cold pressed and have as much information as possible regarding chemical breakdown, acidity and Details about Where it comes from. It should be bitter. If not, there are no antioxidants and the oil is old or harvested very late.

😉

[Wyebird in reply to Anag]

Lol I’ve got another bottle of red palm oil to use. - tablet form- I’ll watch my platelet count. If it does seem to respond I’ll Come back to you for olive oil capsule recommendation .

I’ve enjoyed your posts.

Keep safe

[Wyebird in reply to Anag]

Just googled olive oil- so if my platelets are responding then olive oil it is 😁😁

Once again thanks

[Anag in reply to Wyebird]

I don’t use the olive oil to lower platelets. It’s just generally amazing for health and a great source on energy instead of carbs. Eating carbs guaranteed that you get hungry and have cravings. I don’t have either and no more drop in blood sugar. My body just burns fat. I fasted for 5 days, just water. Wasn’t hungry once. My body just burned my fat, old body and old, no longer useful immune cells. I had a normal stool every day! Incredible! I started eating on day 6 and by day 7, I had energy like 25 years ago!

[Wyebird in reply to Anag]

I couldn’t do that I’m afraid. My will power isn’t good.

[Wyebird]

Oh no- A reduction of 1 made a huge difference to me. If you feel like this then it seems that your q of life is impaired. Have you asked for an alternative?

[Joey71 in reply to Wyebird]

I've tried interferon but had terrible side effects. I just find it strange that I have been taking 3 tablets of both anagrelide and hydroxycarbamide every day for the past 9 or so years and this has only just started to happen. Maybe it's not ET/medication related?

[Wyebird]

Please take care. I hope your heamo can find a solution. Maybe your body needs a break. Please keep us informed

Wishing you well

[Windy51]

Hi I am going on Hydrea for the first time I’m a bit nervous

[Wyebird in reply to Windy51]

You will be fine. They start you on a low dose.