So I ended up taking myself to the ER after my lightheaded feeling became constant this past Monday. I was at work in an all day meeting ( yikes) when I started to feel worse like I might faint..my heart started racing, my chest started hurting.I panicked, left the meeting and somehow drove myself to the hospital. I tell the nurse about my condition and that I'm either anemic and my bone marrow is failing, I'm having a stroke , embolism, or a heart attack. EKG is normal, bloodwork is negative for heart attack/clotting episodes, electrolytes good, all blood counts are normal except my dumb platelets. Only 625..no different from 4 weeks ago. I was released with a script for Xanax. I forgot to take my baby aspirin that night and the next morning the lightheaded feeling was gone. I haven't taken aspirin since Monday and no more dizzy spells.The dizzy spells seem to have started after I started the aspirin regimen. I feel silly for ending up in the ER but honestly thought it was the end for me. Has anyone else had this reaction to aspirin? I will call hematologist next week and see if he thinks I should take another blood thinner or only take every other day or something..
Drama Queen? : So I ended up taking myself to the... - MPN Voice
Drama Queen?
Hi Jennifer
That sounds scary and I think getting checked over was the right thing to do.
Its good all your tests were OK. Please do contact your hematologist ASAP as ceasing any form of meds is not recommended without consulting them, although it does sound like you may have found the issue. I would try and call today if you can.
Some people can be allergic to aspirin so that may be it, I know my sister can't take it but I can't remember the exact reason. Clopidogril is an alternative.
Keep yourself well hydrated too.
Paul
Hi, my platelets are 600 and my Dr. said its ok if I take aspirin every other day. It bothers my stomach. I occasionally get that dizzy light headed feeling. It's scary as I think I'll faint for a second but I don't. Sometimes I think it's blood sugar or dehydration. I'm pretty exhausted most of the time.
I hope this helps
It hurts my stomach too
Hi do you take the gastro-resistant asprin? I asked my doctor if I could switch to them a few months ago hoping they will protect my stomach more than the usual ones.
I'm taking chewable baby aspirin. I will ask for coated aspirin to see if it makes a difference. Does it work for you?
It's difficult to tell but I just feel it's important to get as much protection for your gut as possible with a concoction of drugs daily. I'm sure long term they are the answer.
Hi Jennifer,
After a very nasty stomach bleed 5 years ago my consultant perscribed Clopidogrel instead of aspirin. It does the same job and is much gentler on the stomach than aspirin. The nurses at my hospital call it ' posh aspirin' . I don't know what the cost would be in the states? It's more expensive here in the uk, hence aspirin is perscribed first. It's worked for me and no more bleeds since I've been taking it.
Best regards
Judy
That sounds like it may be an option. I don't want internal bleeding!
It sounds a bit like a panic attack. Apart from the meeting - not sure how stressful that might have been - you are getting your head around having an MPN and everything that entails. If you have been taking aspirin for a while and miss it for a day or two, that will not make a huge difference to the stickiness or otherwise of your blood. I'd be careful about driving yourself to the ER if you are feeling unwell and like you might faint.
I felt like a complete failure. I can't contribute anything at work feeling like that
I really wouldn't go beating yourself up. Everyone gets stress in their lives and it sounds like you have a lot on between your health, trying to conceive and work. Sometimes we don't even realise we're under pressure until our body reacts!
Maybe speak to your primary care doctor about everything that is going on and then approach your HR or line manager at work. One thing at a time. You'll get there.
You all seem so brave and just getting on with life! I feel like a hot mess. Thanks for the support
Oh I for one, have my own hot mess days! I'm sure we all do. Please don't feel alone in this.
Thank you. It's hard because these diseases are so rare no one to share it with. I had my pity party and now it's time to toughen up I guess.
you'll get there. And some days will be rougher than others. Sitting in the chemo lab getting phlebotomies with me being the only person in the room w hair on my head (in a group of 75 ppl getting chemo) has a way of keeping my perspective in line. I AM grateful for every single day I get UP in the morning. But I still get a bit depressed when I cant go hiking and out in the woods like I've always done.
Things can always be worse. Lets hope they don't get worse.
Hello Jennifer I think Paul is right about not stopping any meds until you have talked to your haematologist. My platelets are around the same level as yours and I get occasional light headed Dizzy spells which are a little scary but I had these before I was diagnosed and before i was on aspirin. It could just be an ET symptom and nothing to do with the aspirin. Sounds scary though and you did the right thing going to hospital. Check with your heam before you stop the aspirin. Don't take any risks with your health xx
Light headedness, dizziness is indeed a symptom of ET. I suffer daily with this along with a dull headache. I'm also only on aspirin but I had the dizziness before I started the aspirin regime. My platelets are around 910. I'm afraid the dizziness is all part of our condition, I just try to ignore it but it's a pain in the backside. 😃
Well actually the only reason I'm on aspirin is because I'm trying to conceive, otherwise my hematologist said I didn't need any meds yet. I noticed aspirin helped with the headaches and tingling. I've been tired but the constant lightheaded feeling is something new . I'm not one to rely on drugs but the Xanax has helped me sleep ( I was only getting 4-5hrs a night) and I feel much less fatigue than before. Maybe I was just incredibly stressed? I have no idea what my body is doing. I appreciate all your comments.I guess I am afraid to let anyone know what's going on with me at work so I drove myself which probably wasn't the brightest idea 😞
Hi
Letting people know at work is a difficult decision. I did tell my line manager and HR as i think its important they know, most people are incredibly understanding.
Should you experience any issues at work the condition is covered under the equality act, you have to be treated fairly.
Paul
I just have a hard time even talking about it with family. I need some time to come to terms with this so I can communicate without having a breakdown.
Its difficult yes, in a way I was lucky if you want to call it that, i was hospitilised so that sort of made the decision for me, i had to tell people.
How old are you? Do you work full time and if so, are you able to manage these "episodes" of brain fog?
Im 45, im out of work right now as was made redundant not long ago, i did work full time and intend to again when i get a new job.
I was lucky in my last job though as could work at home if i wanted which did definately help, my employers were really good about it.
Thats why its good to tell them, even if you cant work at home you might be able to agree to be able to take rests. The last thing you want is overdoing it and your work performance slipping and them not knowing you have problems.
Sorry to hear about your job! We call it "reorganization" or "downsizing" here in the States but it sucks just the same. I will come up with something to tell my employer when the time is right. Good luck with your search!
I felt very similar once, felt giddy, balance bad, heart racing and then my legs went really weak. Surgery thought it was middle ear infection, but did a blood test which came back showing high levels of potassium. Apparently this can cause poisoning and I had to leave out everything high in potassium. I managed to get the levels down without having to go into hospital. I am very careful with food now and have sadly given up eating my favourite prunes!! I think someone else on this site had a similar scare, So maybe something to do with our condition.
Hmmm. I guess there's a learning curve with these diseases..what's an emergency and what's part of the disease. If my dizziness had been transient I think I would have recognized this as a panick attack. It was constant though..
Fill the Xanax script! Yes occasionally will feel worse than normal and have thought about going to the ER. Fortunately my HMO has it's own ER so it is just a copay. But I don't go and it passes.
I am only taking half a pill at night but it has helped me sleep...I feel better.
Hi Jennifer, I didn't have the dizzy reaction but like you it hurt my stomach too much and I had to stop taking aspirin even though I had omeprazole for my stomach.
No I don't think you are being a drama queen. Our MPNS are rare diseases so it makes sense to get anything new checked out. Please don't stop any med until you have asked the medics, even if you only get a telephone consult. As others have said your symptoms are symptoms of ET and PV which I have.
My blood sugar can dip quite suddenly making me feel very light headed and shaky. I have had tests for diabetes which have proved negative.
It is difficult to talk with family but one of the best ways is to take family and yourself to one of Maz's forum days because when you split into groups and your family will meet other families facing the same issues of worrying about the illness we have. It helped my husband immensely.
Work has been very supportive, I went to occupational health and they have told my boss that I should be allowed to work from home if necessary. I don't abuse this but do it when I'm having a bad spell.
You are not a failure, you are getting used to coping and living with a chronic and rare illness. I'm sending you tons of "e" hugs because I know how you are feeling. As you can see from all the replies we are there for you. Kindest regards Aime xx😺😺😺
Thank you Aime. I think of my parents who were both diagnosed with chronic illness (mom -RA and dad- type 1 diabetic) who managed to struggle through life and still be positive. Somehow you have to just get on with living
I also have ET and systemic mastocytosis. I had a full blown faint and ended up in A&E. Tested everything and found nothing except my blood pressure when sitting dropped over 20 points when I stood up.
My current Haem seems to think the mastocytosis could be the cause and is getting other blood tests (previous haem ignored it). Have you had a BMB to check if you have this together with your ET?
They did a sitting vs standing test while I was in the ER and there was no significant change. What is mastocytosis? I haven't had a BMB yet. I was just diagnosed as JAK2+ last week...
Hi Jennifer, just wanted to offer you some support and say your not alone in feeling anxious about sudden symptoms. I too ended up in A&E when i had sudden symptoms of brain fog, dizziness and tingling, thought I was having a stroke! I was at work and they were not very supportive, I told my boss I wasn't well and went to A&E. Dr thought I may have small clot in inner ear canal or Labrynthitis. At the time I felt like a time waster but what if it had been something more serious and I hadn't gone? I think our illness has more of an impact on us psychologically than we may realise and sometimes you need to take a time out. I have a stressful job but I am currently on sick leave as I was suffering severe anxiety symptoms and now depression. My job is important to me but my health I have realised is more important!
Right? How are you supposed to know if you're having a stroke? The brain fog feeling came out of the blue and became constant..
The risk of stroke is at its worst pre diagnosis, if you imagine most of us walk around with these conditions with no outward symptoms for years yet not being treated.
A lot of people only get diagnosed through accident, i.e other checkups, or giving blood etc.
I don't think I have had this for long..my son was born Oct 2014 and they do a bunch of bloodwork at your 1st prenatal visit which was Mar 2014. Platelets were 222 and stayed normal throughout. I had some preeclampsia post partum so they did some CBCs after I delivered and they were starting to creep up (353) but still in normal range. The questionable time frame is 2015 to Mar 2016 when they were noted at 507. If I did have JAK2+ was it dormant? Anyway, I don't think I'm at high risk for a stroke...I will ask hematologist at next appointment. I have resumed aspirin every other day.
Hey
Everyone in the world has Jak2, it is either mutated or it isnt. Its just one of many genes which help control the creation of blood cells.
I know i asked the question early on, is it possible to identify people before its mutated (i.e in some sort of dormant state) and was told no. The reason i asked was because my sister has ET too and had concerns about other family members.
I dont think you are at high risk either, how are you since you went back on aspirin? Could you try taking it at different times of day (not sure if you have been told when to take it?).
The only thing i would say about any blood tests during pregnancy is these can be all over the place, i dont know how much they can be affected but i know some women have iron defiency issues (its where the 'cravings' can come from, when you hear of pregnant women eating stones and stuff).
Keep and eye on it, and dont be worried about contacting them for an earlier appointment if you have problems.
Paul
My hematologist says aspirin shouldn't cause this effect and to resume the daily baby aspirin. I will...but I just don't believe him. This feeling started after aspirin and went away when I stopped for a few days. Either that or I was so anxious that it caused it and Xanax has helped. No clue .
If it happens again, ask if any others are possible.
The dizziness shouldn't be constant though, right? This was over 3 days getting worse each day
I have days where my head feels very sluggish and I am dizzy with blurry vision, i also get a crawling sensation all over. I see these as my usual symptoms. If I felt very unwell out of the blue and symptoms out of the ordinary for me or more extreme thats when I would attend A&E. If your unsure always seek medical advice, if its a false alarm thats ok.
Thanks for your support. I think the brain fog or lightheadedness is the worst
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