Have you ever lost track of where you are while driving?
I've probably had this occur 3-4 times in the last year in places I have gone to many times. Twice this was when I was approaching a street where I had to turn. Suddenly I didn't know if I needed to keep going or turn, or had taken the wrong highway exit This passes after a few seconds and I am fine. I am in control of the car while this happens.
My heart doctor thinks it was a TIA. My GP is investigating, but says it is not alzheimers or a brain problem. We are awaiting my sleep apnea test as I snore and suffer from excessive fatigue spending most of my time on the couch or in my bed reading or working on my laptop. My MPN specialist also suggested the sleep study. saying that it was not red blood cell related. Their thought is that I am falling asleep momentarily while driving. When another person on this forum mentioned having this loss-of-place problem, I wondered if this was related to my ET or long term use of HU. (I have been taking it for 13 years.)
I want to thank you for reading and responding. It is so comforting to know this group of experienced MPN suffers is here, really listens to what you have to say, and gives you their good, honest feedback.
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Doxy46
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I wonder if this could have been caused by your excessive fatigue, which sounds horribly debilitating. Lack of sleep can do strange things to our brains.
You mention that you spend most of your time sitting or lying in bed. I know fatigue is tough (I understand - I'm post transplant) but I think it's worth forcing yourself to move around every day, even just a ten minute walk. Inactivity is so bad for us.
Thanks, I know I should walk more. LOL, my husband reminds me frequently. I do walk around a bit and stand while I am fixing breakfast and dinner. Although with dinner, I often have to set a timer to remind me to check what's cooking, so I don't have to stand the whole time. This need to be off my feet is also related to knee and back problems as well as foot neuropathy. I think knee surgery is in my near future. I fell down 2 steps recently and banged my head because my knee gave out, so I am reluctant to walk around much. I do stretches though to keep my limbs limber.
Recently, I have been revarnishing hardwood floors. I work a little and rest a little. The job is getting done, but it wears on me. Sometimes, I have to take it easy for a couple of days before I can resume work.
There are a number of neurological issues that hydroxyurea can cause, including peripheral neuropathy, hallucinations, and seizures. I have never heard of hydroxyurea being associated with the type of loss of place you are describing. It would be a stretch to consider this a possible minor seizure. I seriously doubt that it what is going on. While a TIA is in the realm of possibility, if your ET is well controlled I would be considering other explanations.
A comprehensive sleep assessment is very important to complete. Sleep apnea can be a very serious problem and may well contribute to what is going on. it would certainly contribute to your fatigue. One of the daytime symptoms can be difficult concentrating. I would be suspicious that that may be part of the problem you describe.
The loss of place while driving is something that can happen even in the absence of a neurological event. As otterfield noted, fatigue can do strange things to the brain. Following up on the sleep study is a very good idea. You may want to consider reviewing the issue with a neurologist as well.
Please do let us know how you get on and what you learn.
Walking poles could be very helpful, spreading the load through the body rather than just your legs, especially with your knee problems. Personally, I find standing still in the kitchen much more tiring than walking and it makes my back ache - I read somewhere recently that this is quite common.
Hmm, I never thought of walking poles. Unfortunately, we had our first freeze last week and the snow will be here soon. I am so afraid of falling on the ice because of my osteoporosis. My mother had it, fell, broke some ribs, got pneumonia and died. Walking on fresh snow might work. I bought some bibbed ski pants last year that are nice and warm. LOL, if I fall in them I will be well padded.
Thanks Hunter. My ET is controlled by the HU, although I am concerned about being on it for 13 years. My MPN specialist says I should stay on it. So we will see what the at home sleep study turns up. The results will be in shortly.
I have had this experience occasionally for a while now too, Doxy, but I am 81 and haven't thought it to be particularly MPN related, rather, that it was my age. Certainly not meds as I stopped Peg last January 8 months after a highly successful hip replacement and it still happens from time to time. I just put it down to my concentration straying.My level of fatigue is similar to yours, too and I do try and get out but it's such an effort. I also have a rebounder with a handrail, to get my circulation going, but again, I don't use it often enough.
I do have one tip for you. I always set the GPS when out driving, however frequently I take that same route. It sets me straight if I temporarily lose track of where I am, what the speed limit is or how far it is to the next turn.
Oh yes I’ve noticed an increase of that lately. In my younger days I used to teach at two schools. One morning in auto pilot I drove to the wrong school. Thus making me late. Luckily they were only a mile apart. I had nothing medically wrong with me then but this last 6 months I really have to concentrate on my bearings.
I had the two episodes when I was driving a couple of years ago. They happened a week apart. This was some years before I was diagnosed with ET JAK2 positive and subsequently put on HU.
The first one, I had collected my daughter and grandchildren from the airport about 1/2hr before and was heading home. In fact I was only several minutes from home, when suddenly I didn’t know where I was …. I was incredulous… I could hear my daughter talking to me and I was driving fine tho where the heck was I ….. 🫣
I didn’t say anything to my daughter as silly as it sounds as I didn’t want to alarm her. Then after what seemed like a couple of minutes the scales came off my eyes and I knew where I was 🙆♀️
It really bothered me as I thought I was getting alzheimers. My ex husband had 3 hearts attacks and a triple bypass at 47 and then diagnosed with early onset alzheimers at 55, 2 years after I left the marriage.
One week after i had another episode while driving. I was on my way to my sisters place and again I didn’t know where I was.
Once my mind came back to normal again, I had driven passed my sister’s and I had to turn around and go back. I couldn’t understand what was happening.
I went and saw my doc without telling my current husband as I was quite nervous thinking it could be dementia 🙈
My Doc didn’t believe I had dementia, just that I had a very busy life and people do forget things normally as they get older. She believed I had had 2 Tia’s a week apart and said they most often don’t leave any trace. I had hit my head badly sometime before that which left an indent on my skull after the scabs healed. She said maybe this could have something to do with it.
I had a CT brain and the doc phoned and asked me to come in, telling me she was sorry to pass on the news that I had an aggressive brain tumour. I was shocked and found that hard to believe and was sent for a SPEC scan. This showed that the lesion was dormant and benign, just some damage to my skull, nothing to worry about and no more mention of the TIA’s.
My platelets continued to rise slowly and it was always mentioned that this was due to the inflammation in my body. Having had a couple of anaphylaxis episodes, two autoimmune diseases and arthritis, it all made sense.
It wasn’t till I did a sleep study that the recommendation was made to see a Heamatologist and the subsequent BMB and ET diagnosis was picked up.
I don’t have sleep apnea and live a full and busy life. I do get tired tho I don’t think the driving episodes were fatigue.
A couple of months ago in the middle of the night I had a familiar experience where I didn’t know where I was and then realised I was in my own bed. It felt like it had during the driving episodes. I mentioned it to the haematologist and she said night time TIA’s are hard to establish and next time to head straight to the A&E department.
I’m not sure if my experience is of any help.
I was put in Aspirin in Feb this year and HU in May. This past week I have stopped using the Hydrea for 8 weeks to see if some of my symptoms go away and to see if HU maybe causing them.
Hi Doxy I have had similar, but this was prior to treatment with Hydroxycarbamide so I felt it related more to condition than medication.
I would travel by train to my destination but feel an uncertainty when I got there as though the decision was beyond me . So just returned home .
Also whilst driving I knew I needed to turn off at the junction but just didn’t almost a moment of doubt I feel quite aware all the time and am able to deal with the consequences and take appropriate action at next junction . People say it’s just an age thing but I don’t think so .I have always been independent but the fatigue is rather overwhelming me at the moment .
I hope all the tests reveal a solution and all I can say is it does change it is not always happening so I take heart from that .
Yes, at 77 I get the age response too. My MPN specialist even made reference to it. Thank goodness my GP isn't treating it that way and is seriously trying to figure out what is wrong.
If you do have sleep apnoea, treatment will revolutionise your life. I had been unable to sit and listen to anything without dropping off, which severely impacted my ability to do my job effectively. The GP several times said "NHS doesn't do snoring". It wasn't until a locum picked it up and referred me to the sleep clinic that it was discovered that I never slept more than 90 secs at a time. The CPAP machine and mask gave me my life back! It's well worth investigating.
This experience is what led to my ET JAK2 diagnosis 3.5 years ago. I was driving home down a very familiar freeway when I suddenly realized I didn’t know where I was. Nothing looked at all familiar. I even wondered if I was traveling and in a new city! I was keenly aware of driving safely but completely unfamiliar with my (lifelong) surroundings. Several miles later I saw a landmark I recognized and began to return to normal. The next day on my way to my doctor to check it out, I told my brother what happened and he told me that it was the 3rd time within a month or so that I mentioned this type of experience. I had NO recollection of other incidents. So creepy. My doc sent me to a hematology specialist who dx’d me and immediately put me on Hydroxyurea as high Platelets were causing lack of oxygen. By the way, before this happened and over a 4 year period, I fell (concussion), crashed on my bike (fractured ribs), had 4 surgeries for breast cancer, and then had a pulmonary embolism that just about ended my life. My platelet counts were high this entire time while at 4 different hospitals, and yet no one recognized my MPN. Hopefully these rare blood cancers become more familiar in healthcare systems.
Hmm, the bit about high platelets causing lack of oxygen is interesting. What was your platelet count at the time? Mine have crept up to the 800s at times. I've been know to forget to take my HU or fall asleep on the couch before I take my meds and sleep there to the next morning. I've even done this 2 days in a row.
My platelets were nearly 800K when hospital ER said I should see my primary care doctor about it. (This was pre-diagnosis). I was in ER for shortness of breath, fatigue, dizziness, etc. All led to ET JAK2 dx and being told blood flow was compromised and “pooling around ankles” when I drove or sat in my home office for long periods for work. Hydration and daily walking was highly recommended, along with HU. I’ve not had any other occurrences but now can tell when I’m not moving, eating ‘clean’, or drinking enough water. Even slight Dehydration makes me extremely fatigued and brain fogged. If I’m not mindful of the water, walking & healthy food, my quality of life is a daily moving target. I’ve been off HU for a year due to side effects, and even with elevated platelets (500’s) I feel sooo much better. I’m 68 with a previous PE so MPN specialist will be suggesting a new RX when we meet in a month to reduce my risk of another event. I wish you - and all of us - all the best as this disease can feel like putting together a puzzle without having the aid of a picture to guide us!
Thanks for the details. This is very useful. I have varicose veins so blood does pool around my ankles, and it has been getting worse. I also had a vein removed in one of my legs. And I tend to drink insufficient amounts of water. Perhaps this is why it only happens when I am driving.
Yes yes yes…. Frightening! My question is did you have Covid ? I did three years ago…have long Covid and that same situation has happened more than just driving. I was told it’s a side effect of long Covid and was also told “we ( doctors) still have no idea why or what to do about it”. Another friend lost her job because of “forgetting “ how to work the machines. I like the phrase “ lost of place”. I “forgot” how to replace a vacuum cleaner bag! It’s not really forgetting…. It’s just not knowing . There’s nothing there to forget.. so hard to explain where people can understand.
I also have ET and on Hydrea for more than three years and personally I don’t think they’re related because of other people who have had similar experiences and don’t have MPN.
Ask your dr please and let us know his opinion thanks
No, I have not had COVID. Knock on wood! So far I have had a brain scan and an EEG so it is probably not seizures. I'm waiting for the results of the sleep study.
After reading your post I thought of a neighbor who experienced the same symptom of not remembering where he was while driving. While symptoms can point in many directions, it might be helpful to know that he was diagnosed with M.S.
There was another episode that was probably not be from the same condition, but worth the telling as a warning . I had just backed out of a parking spot, turned the car and was proceeding along towards the lot exit. The next thing I knew my the car was slowly rolling forward. I think I may have blacked out momentarily. The hemotology PA said she didn't think it was a TIA. Surpringly, my GP asked me what kind of car I drive. He proceeded to tell me about another patient who had the same thing happen to him. The culprit was his seat belt pressing against his carotid artery. Sure enough, I had been having trouble with the belt rubbing against my neck. No matter where I positioned the belt, it always cut into my neck. I now use a fuzzy pad on the belt made just for that purpose. So folks, watch out for those tight seat belt!
Wow, I have 8.22 events an hour, so I wake up every 7.3 minutes. There were 12 obstructive, 11 central apneas and 61 obstructive hypopneas per hour. According to the Mayo Clinic's webpage on central apnea, my brain didn't send a proper signal to tell me to breath during those 11 events. One of the things that could have caused this is brain damage from a stroke. I had a TIA in 2010 that caused me to black out briefly. That is the event that led to my ET diagnosis. So, at least some of the sleep apnea events could be related to the ET.
The next step is an overnight study in the hospital's sleep center. I think this one will include the EEG wires. And probably a visit to an ENT to see if there is anything that can be done to help my breathing. I do have a lot of scar tissue in my sinuses from old infections, but I don't know if that could cause this.
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