ET problem

[shiela23]

Struggling everyday swaying my head dizziness and headache… who else experiencing this… is this symptoms of et? Blood test are fine. How to get rid this symptoms. Is this vertigo? Or et symptoms? Thank you

[hunter5582]

Dizziness and headache can be ET microvascular symptoms. These symptoms can also occur for other reasons. The correct intervention depends on understanding to cause of the symptoms. If it is ET microvascular issues, then it may be as simple as needing to take aspirin 2x/day, which some people need to do. It may also be that cytoreduction is needed if you are not already doing that.

This is not something to try to sort out on your own. Definitely consult with a MPN Specialist who is familiar with how ET manifests. You may also need a consult with a otolaryngologist and/or a neurologist who specializes in migraine. The place to start is with the MPN Specialist who can advise you as how to properly assess what is going on.

Hope you get this sorted ASAP.

[shiela23 in reply to hunter5582]

Does aspirin helps with all this symptoms? I’m taking hydroxyurea… can I take aspirin? Is it safe?

[Otterfield in reply to shiela23]

Please don't start taking aspirin unless your haematologist advises it. And try to get referred to an MPN specialist.

[Ebot in reply to shiela23]

As Otterfield says you must check with your haem first but it’s unusual not to be on daily low dose aspirin. That is the standard first line treatment - and you’re already on Hydroxy. Hope you find resolution (and the keeping hydrated suggestion below is a very sound one).

[hunter5582 in reply to shiela23]

As Exter 21 pointed out, dizziness can be an adverse effect caused by HU. So can headache. online.epocrates.com/drugs/...

It goes back to consulting with a MPN Specialist regarding what you are experiencing. Hope you get it sorted soon.

[Mardigras in reply to shiela23]

Hi Sheila, I do have dizziness and silent migraines. I had been taking a Hydroxy and one 80mg aspirin a day. After seven years the side effects were becoming intolerable, but taking both the aspirin and the Hydroxy seemed safe. Both were prescribed by my Hematologist.I hope you can get it sorted soon.

Best regards

Marcia.

[shiela23 in reply to Mardigras]

Thank you for your reply. How many capsule do you take hydroxy everyday?

[Mardigras in reply to shiela23]

Just one Shiela for seven years. I do not tolerate Hydroxy so have ceased taking it.

My reaction to Hydroxy over time got worse and I took the decision not to take drugs anymore.

I do not advocate this for anyone other than myself and I am still waiting for an appointment with a new hematologist, who I am sure will not agree with me.

I hope you can get your problems sorted.

Best regards,

Marcia

[shiela23 in reply to hunter5582]

Thank you for your reply.

[hunter5582]

Low dose aspirin is part of the standard treatment protocol for ET. Nearly all hematologists preescibe it to prevent thrombosis and microvascular symptoms. It is commonly prescribed along with HU (unless you have a contraindication for the aspirin).

I was taken off aspirin for a period of time. I started to experience microvascular symptom (pain in feet/toes). The symptom stopped the day I started back on the aspirin.

I would strongly suggest consulting with your hematologist before taking anything. Unfortunately, most hematologists do not have the KSAs to provide optimal MPN care. That is why it is so important to consult with a MPN Specialist. Also suggest consulting with a MPn Specialist in additions to or instead of a regular hematologist. Here is a list.

mpnforum.com/list-hem./

[EPguy]

As we discussed in an earlier thread we had similar dizzy type symptoms, as I described like being in an out of control space ship esp when lying down. In my case it got a lot better after switch to INF (Besremi) Dizzy spells are milder and shorter and rarely when lying down.

I have been on one/day of aspirin for both HU and Bes, so aspirin does not seem to affect the problem for me.

I can't say any one else would have the same result, but if your Dr agrees, you could consider trying different medication such as interferon.

[Amethist]

Hi Sheila, as Hunter said, there can be other reasons for the symptoms of headache and dizziness. At the beginning of my own discovery with ET, my gp also tested vitamin levels . My vit B12 was very low and correcting that ( something I had to do myself) made a huge difference to so many of the symptoms including headaches and dizziness. I’m one of those who prefer to avoid meds when possible, so half an aspirin every third day works well for me. I did check this with an MPN specialist and she was fine with this. But for me correcting vit deficiencies was the most helpful thing.

[Ovingite]

Hi Shiela23,I've had ET for 5 years and in years 2&3 I suffered similar effects (dizziness, disorientation and fatigue). Through a process of elimination I found that the dizziness and disorientation was linked to hydration and by ensuring that I drank 1.5 to 2 litres of water a day and moderating coffee and alcohol the problem abated.

I haven't had any significant recurrence for 2 years, so hoping the problem is now resolved, but I would echo Hunter's caution that you should get expert advice.

Good luck and let us know how you get on

John

[LadyAbash]

Hi Shiela23,

I have ET and on interferon fortnightly and aspirin daily. I experience headaches and dizzy spells ever so often, but have a history of vertigo.

I know when it's vertigo and not anything else, because my eyes flicker and can't focus, suffer nausea and a funny sickly feeling in my stomach, for a number of days, before I start vomiting and can't stand. I was given Betahistine Dihydrochloride. I now only take this for a few days when I feel the symptoms of vertigo coming on. This is enough to stop it becoming full blown.

Like Hunter said, an MPN specialist will be able to advise you and perhaps if you ask about vertigo, they might do the Dix-Hallpike Maneuver or other test to check if you have vertigo. Vertigo is an unpleasant addition to your ET but you will be able to manage it, once it has been confirmed that it is vertigo and not something else.

Take care,

LadyA

[Threelions]

Joining the replies late and some great responses above, as always.Since being diagnosed with ET I can honestly say I feel terrible (dizzy & headache) if I don’t drink enough water/squash. It’s so important, as others have mentioned, to keep well hydrated.

[light]

I have ET JAK2+ and I am on Peg Interferon and have been having headache and dizzy spells, disorientation. My Haematology sent me to check all and they could not find anything wrong but for headaches suggested to CQ10 daily 300mg and since then my headaches stopped. Dizzy spells and disorientation is still going on. They will investigate that again. Wishing you well.

[EPguy in reply to light]

Interesting for the CQ10. I took it for a while before my Dx to help blood pressure; it made no diff (my MPN was driving it) so I stopped. I've read it can affect PLT, but I'm not clear how. If your Dr suggested it the PLT issue seems not a problem. If it's working in some way that's what matters.

[Scrollernut]

Have ET for going in 3 years and got the same dizzying/loss of balance/ disorientation/total loss of recall feeling for the past year. Even got a medical bracelet that says I have vertigo so the cops won’t think I’m drunk! The past 6 months or so it’s getting worse. I’ve always had migraines so nothing new there. Went in for all kinds of neurological tests….found nothing. Very scary at times. Not for sure what to do next. No drs appointment in the near future but what are they gonna do? I’m on 500 grams of Hydrea every three days. One comment about dehydration was interesting. Guess I’ll try more water again. Gonna float away one of these days! Good luck. Let me know if you get any kind of answer.

[nightshadow]

Another issue may be allergies. I tend to get sinus congestion further back when my allergies kick in, leading to headache and dizziness despite clear nasal passages. I didn't realize I had allergies for years because of the difference in the standard diagnosis. Might try a decongestant and see if it helps.

You might also give the Eply maneuver a try and see if it has an effect. It is a treatment for vertigo, it won't help if the issue is from ET, but if it is from inner ear issues it should be helpful. It was recommended to me by a friend who suffers greatly from vertigo. hopkinsmedicine.org/health/...

[Exeter21]

I got very anaemic on hydroxy which made me light headed etc. Also took aspirin which the medical information explained was always necessary. Currently off Hydroxy as did not agree with me but still daily aspirin important. In process of Haematology linking with MPN to try something suitable I hope. See an expert . My Drs locally knew little on this rare complaint . Julia uk

[Anag]

Hi Shiela,Good info from everyone. Inauspicious have ET. Aspirin is so important unless you Arena 1200 or more. Then you run a risk of bleeding. I can’t tolerate HU. I get neurological symptoms. You didn’t describe your head swaying well (?). That could be neurological. If so, HU is a no no. I take Anagrelid. Better tolerated by most.

You must go to an MPN specialist and educate yourself!

Other causes of dizziness are stiff neck, shoulders, etc.

Will pray. 😘🙏🏻