I have ET, CALR. Yesterday, I had my 7th Aura Migraine, since mid-September. This morning, I had my 7th TIA in 3 years. I injected my belly with an antithrombotic substance (Lovenox) immediately. I felt better within 15 minutes. Have been light-heated and weak the whole day. I expect this to continue for a while until I’ve somehow recovered. I’m going in for a blood test tomorrow morning. Has anyone had Optical migraines with aura (flashing lights)? I usually feel like I‘ve been run over by a truck afterwards. My doctor doesn’t think there’s a connection.
Optical Aura Migraine again!: I have ET, CALR... - MPN Voice
Optical Aura Migraine again!
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Anag
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Hi Anag, yes I get frequent ocular migraines with flashing aura, headaches and difficulty seeing sometimes. I describe it as looking through water or broken glass. It is worse when my blood is thicker. If I have the headaches too, I feel really sick and tired after it. Not nice, every sympathy. Kindest regards Aime xx😺😺
Half the time I have the headaches. I see a C that starts small. Lots of crazy colours and geometrical shapes flashing. It keeps getting bigger and bigger and moves to the left and disappears after 20“-30“. It takes me 2-3 weeks to reallyneurologicslly recover. It slows down my physical and mental being. My ability to cope with auditive and visual stress is almost gone in that time as is my coordination and general strength. I have trouble finding words too. It’s frightening. It’s good to know that it is my ET. It seems I’m more susceptible to these and TIAs that most at lower Thrombo levels! Hm.
Hi Anag, please insist on answers regarding these episodes as mine were put down to me having too many red blood cells but it’s so important to get anything new checked out. Ask for a second opinion (or 20th opinion) if need be so you get answers. TIAs and the severity of the visual disturbances you are getting, need explanation.
Let us know how you get on. Kindest regards Aime x😺😺
Thanks for replying. To know that so many others have this took my fear away. My eye dr. Said it comes from the weather(?!?!) I just had another one again on Saturday. FYI: As soon as it started, I took a 100 mg Aspirin as I did the time before. I keep lying down with my eyes closed during the event and for about 20“ afterwards. It seems that this method made a clear difference. No headache or strange feeling. : )
That’s great, so glad you have answers and a solution. Take care, kindest regards Aime xx😸😸
Hi Aime, hope you are well. Wanted to let you know that I haven’t had a aura migraine since we last talked. I’ve now understood more about my thick/thin blood. There is a certain “feeling” in my fingers, very subtle and that means my thrombos are up (I fluctuate between ca. 500 and 700) and I take a bit more aspirin. Ie 3 days in a row 100mg. Usually I take 3 50mg aspirins a week and 3x daily 60mg Ginkgo. All the best.
I have problems with blurry vision like Aime described as looking through water. Is that a symptom of ET ? Is there anything to make it better? My platelets are still high but only 616 . No headaches but head feels goofy!!
Goofy is really the right word. Clutsy and lost. There is obviously neurological damage. Good thing is that we can build up the brain. I took a walk a couple of hours later. It tired my body but helped my brain.
Ah you have my sympathy a nasty part of ET can be these occular migraines and visual problems - I had them often for a number of years before being diagnosed just thinking it was a migraine from life being stressful, once I was diagnosed and found to have sky high platelets I appreciated more what they had been about and how fortunate I had been to not have had a TIA- I did find once on Hydroxy and things were under control they stopped all together - I had 13 years on HU and funny enough in the last six months the HU has not been working so effectively for me with controlling my counts - and lo and behind the occular migraine happened again which was quite frightening - I am now on Pegasys and it’s all stopped again. I wish you well I know they are not nice - and do do tell your consultant as soon as you can that this is happening, I do hope when you say your doctor doesn’t think they are connected you mean your GP not your hospital doctor?! All the best
Hi help at last, Yes, you are lucky not to have experienced TIAs. I start falling against walls and usually have trouble controlling my right leg, when walking. Crazy. I take Anagrelid. I will look into Pagasys. I have had 3 hematologists. 2 are university professors, as well. My GP, who’s also a good friend, had never heard of ET, neither any other doctor in my big circle of doctor friends. All these years they couldn’t figure out my symptoms. I was finally diagnosed 7 years after the ET started!! All just said that a lot of people have these migraines. It’s just a migraine. After my TIAs, “oh, we don’t see signs of a stroke.” It’s enfuriating! Another thing that only one hematologist confirmed was that my histamine intolerance (which started with the onset of my ET) is linked to ET. He said that more than half his patients have that. The others said, no. As soon as I went Paleo and healed my gut, my hist. Intol. disappeared. I was able to take aspirin. In the end, I really feel like I’m on my own. But that’s not true. I have all of you in the forum. I’m blessed! Thank you!
Hi Anag and fellow visual migraine suffers. I have PV, am on hydroxy, aspirin (occasionally as I am a bruiser). Bloods were getting under control for a bit no venesection for 10 months, no visual migraines, I was getting loads before diagnosis and treatment 3 + years ago. Before menopause I had bad migraines that lasted for days. Yesterday I had a visual migraine, you described the type I get very well Anag, it was unusually in the morning, lasted about 20 mins, then I was in bed knackered all day and I feel exhausted today. It is a bit longer than usual between blood tests, but I do think it is a symptom and I will need a venesection. My blood pressure is also very high and I feel very stressed. I see he cardiologist today for that. Are well, life goes on, thank goodness. Be well. Mal
Oh there so is a connection. Prior to my diagnosis I was having all the symptoms but the flashing light and just before my diagnosis, I had a couple which included a ghostly spinning space-ship type thing on one side of my vision. Now that was weird and more so for seeing it in writing! It's only my description however, not going off my trolley!
I never had pain with those. I did however lose speech, comprehension and one side of my visions (in both eyes). I didn't recognise words and I couldn't speak properly or make words. It was previously (years before my diagnosis) put down to the damage to the left side of my brain, caused by a very minor stroke I suffered in 2012. Apparently, that was the area affected by it and therefore the right side of my vision was affected......Funny things brains....!
Wow, JackLina! That is huge! Everywhere I read, it says that this is harmless. I never buy into such a statement. This obviously was rooted in your speech/language area. Until Tue and yesterday, the aura had always moved to the left. This weeks it moved to the right. An MRI done right after my TIA in December found that I have a stray Arterie growing out of my left cariotis artery, branching strangely to the left inside my brain. This increases my chances of an aneurism greatly. I’m wondering if that has something to do with the auras as well? Another thing I noticed this week. Some hours before the migraine hit, my neck was stiff! Did you ever notice that? Thanks for writing!
Hi Anag, I do get a stiff neck often but to date, nobody has suggested that I have anything amiss with my corotis and I'm content to accept that they are normal! For years I have been visiting the pain management clinic for various pains in back and neck areas. Mainly neck (left side) and at times (not at the pain clinic) it has been suggested that I have fibromyalgia but I'm content to accept that I have not.
Having been treated previously by my pain management doctor, who is amazing, I am content to accept that my pain i related to pressure on the nerve in my vertebra closest to the neck pain.
Interesting however is the fact that at certain times between injections, I have this stiff rear left of neck, which turns to pain and travels up the back left side of my head. It sits there at the base of my skull. I'm used to it now. To be honest, I'm finished with trying to diagnose the source of this, which seems to have subsided a lot since I began Pegasys in June last year..... Now that I've put that in writing I'm again wondering if there is a connection.
If it is, does it change anything? I'm not sure it does. All the best Anag. I hope you find your answers. All the very best. P
Hi Jacklina. Apparently, I’m one of those rare people who have this artery thing. My husband calls me a medical “lost and found”. I have the same pain that you describe on the left side. It’s mild. I also have a slipped disc between my 4th/5th vertebrae (neck) and a prolapse between the 1st/2nd. Car accident 1983. I finally fixed this pain, which was ruining my life and career in 1998, with an amazing physical therapist. I continued special exercizes for 6 months on my own. Actually, my whole vertebrae was involved. I do exercizes whenever I need to. I don’t like to take anything meds or shots. Anagrelid is more than enough. Have you tried physical therapy! A really good therapist works wonders and that can fix you up for many years! The pain and stiffness that I get before the migraine is definitely different. I’m having an TESLA MRI in a month in order to clear this artery thing. If I’m a candidate for aneurism, I need to know. Then I can take steps to avoid getting one. I will feel safer. My daughter has fibromyalgia. It has been horrific. Sometimes affecting every inch of her body. Since she went on the autoimmune Paleo diet, with strong Omega 3 supplements, some meditation and learning not to take life too seriously (she’s 15 and terrified of me dying). Understandable. Her bouts of this have been drastically reduced to about once a month. Each one of us is a hero. Living with our illness and managing our symptoms and emotions that come with them, with a smile. A big hug! Keep well. A
Thank you for the hug. They make all the difference, don't they?
I did have physio. Lots of it from different places over the years. Mainly via pain management clinic with exercises but due to the aggravation of the neck pain I couldn't carry them out. They always brought on the pain I mentioned. My consultant has now offered to kill off the nerve sending the pain. Not all together certain this is a good idea because for me, it could be an indication of the ET symptoms etc. so rather dubious.
I'm exactly the same as you re medication. I do just the clopidogrel and Pegasys. My body says NO to anything else. I wish you well. thank you for sharing. Please accept a hug from me?
Hug gladly accepted! I was with an orthopaedic surgeon in training for 6.5 years during his training. I was his translator, so I’ve heard and seen a lot! Nerve cutting will come with long time complication in every aspect of your health. Doctors like to do and get rid of the symptoms, few care about later. Try to get to an “energetic” doctor. There aren’t too many, but they work wonders. There are also orthopaedics, who are trained in manual medicine. Also cranial sacral therapy May be helpful. Any one of these might help you, but please stay away from the knife, unless it’s a last resort, after you’ve exhausted all your possibilities. Since I am staying away from any drugs, I take organic turmeric powder for any pain and inflammation. Please try. 3g turmeric in a cup of warm milk or rice milk, with a pinch of black pepper (a must for efficacy) and some honey. It’s called golden milk and it works wonders for my whole family and many friends. If you don’t like the taste, put it in a capsule or buy capsules. They must have black pepper! Turmeric has unbelievable health benefits. I will be trying it as a therapy after I get all my nasty amalgams out! 11 teeth. They’ve been in there for 38 years!! It’s probably the root cause of all my ailments. All the best, Jacklina.
Hi Anag. Thank you for this. I have no intention of going ahead with the nerve cauterisation. It is literally that. Burning the end of the nerve. However, he did warn me that there are many possible complications, not least that other nerves will gather to remedy the loss of that nerve ending and respond in it's stead
That said, due to the significance of the pain and my not being convinced of it's source, I do not intend to agree to having this carried out when given the date. He will understand if I do refuse. He always gives me the last word. He is very energetic and caring.
Regarding black pepper, I have an allergy to it. I'll take a look at the turmeric. I do keep active with around two hours fast walking per day but need to get back to my yoga. Of that I am certain and determined. What an interesting 6.5 years that must have been. ATB. Penelope
Hi Penelope, yes the years were fascinating. I joined in on sport medicine and Manuel medicine seminars. I was the gynea pig for manipulation. I can spot a 1cm shorter leg walking down the street at 100 paces! : ) I’m glad your strong on the nerve discussion. I do hope you find a solution without drugs. Did you try craniotomy-sacral therapy? Big in the German speaking world. You are amazing doing 2 hrs fast walking. Yoga is apparently thrombocytes reducing. I read about studies regarding this. I haven’t been able to sit still enough for that. I need someone to lead. Have a great week! X
Thank you Anag. I don't do drugs as a rule but it was proved to me long ago that without the clopidogrel I die or worse!!. I'm more than content to give them a swerve. See if you can get into yoga. The effect is unbelievable. Mentally as well as physically. All the best P.
Hi, how do you know that what you had was a TIA? And you inject yourself without counseling a doctor? Wow!
I nust saw this post. I have gotten migraines with auras since I was a kid. Through diet and knowing it was often food related, I got them under control. I did have one last week, followed by a bout of vertigo.....lucky me. And now that I have been diagnosed with ET, I felt that this migraine was really bad- I felt like I was going to have a stroke. I have heard that TIA's and migraines are connected. But also think mine are not related to ET since I have always gotten them.
Aha! Here is something that I’m burning to know about Jschwab! Please let me know how the migraines are related to food! Do you have any articles? Studies? Other info? Your experience?
Hi Anag-
Since I've been having these since I was little, I have done analyzed my experiences. I cannot have anything with MSG in it, meats that are cured with nitrite and nitrates (Bacon, ham), excessive amounts of sugar from processed candy with dyes like sugar, etc. I drink a gallon water a day- when my glass container is empty, I know I'm hydrated... hydration has a lot to do with it, in combination with salts and sugar, processed foods.... big no no for me. I also know my triggers vary. Now that I have ET, the first migraine I had was last week and it was a full blown dosey that came out of nowhere. I had to stay at work for an hour until my vision came back then I felt like a truck hit me. The usual. Neck pain too....Gotta go to work now. Thanks!!
Wow! Thanks for all of that, JSchwab!
I'm also a huge diet fan!!! My first migraine was when my ET started. I traced it back to 9 years ago, since I had regular blood test, biannually up to 22 years ago. It was a slammer. Next one September, (8 years later), again the following day and 1 wk later, then a month later. 2 in Feb. 2018 on consecutive days and 2 within 3 hours just a few days later. I had started detoxing at the time (September to Feb) then I stopped that. I was feeling good with the detox, then I came across a detox problem that I was born with called KPU, Kryptopyrrolurie. My body likes ridding itself of B6, Zinc and Mangan, which are needed for detox. I had a deficite of both of these at the time.
Since I was diagnosed in Sept. 2017, I immediately went on diet. No carbs, except rice, no milk products, no night shades, almost no legumes (only lentils properly prepared to break down lectins) and no sugar. I slowly changed over to organic. By August 2018, all chemicals and additives were removed as well as processed and packaged foods, except packages organic ham which I still eat a bit of today. Bingo! There's the nitrite and they call it organic ham and bacon! By Christmas, all chemicals were removed from my home and from all cosmetics and cremes. I make everything myself of buy organic. I wash clothes with fallen chestnts that I dry. I'll try to get rid of nitrite.
I treat my family's headaches, toothaches, period pain, bronchitis, etc only with natural means and they work great. I wish I had done this many years ago. I would never had gotten this illness.
Despite all these environmental changes, I still got 4 more migraines in Feb 2019 and also a moth ago. Both were small and I felt fine afterwards, not the way they used to be.
I went to the biggest stroke specialist in Vienna (I've had 5 TIA's) and he said that these Migraines are a release of energy (electrons) in the brain. Whatever that means for me and my condition(?). His wife has them regularly and they are worse than mine. He doesnt seem to worry about them. I'm still not convinced that these things are harmless.
I don't know about you, but this diet and environmental changes are like a fountain of youth. My whole family is doing it and many friends have adopted this way of living. We are physically and psychologically so much healthier! Unfortunately, so many scoff at us. Not easy swimming up stream.
Thank you for writing. If you have any news, please write, as will I. Wishing you all the best! Anag
Hi Anag-
That is so impressive about your health! And slowly going completely natural and organic! You are so right about the fountain of youth- I've just noticed that removing my 2 glasses of wine weekly has made such a difference in my skin. I also just have one cup of coffee a day now, rather than 3-
seem to have more energy and have been happy! ...Despite this recent diagnosis of ET. This website is wonderful- I feel a bond with everyone on it, especially people like you. I have a holistic doctor and she really wants me to go all plant based. I tried that and then it turns out I'm low on iron. I had reconstructive surgery last summer, and had a nerve graft transplant in my face for minor lip paralysis from a previous surgery. Since the surgery last summer, loss of blood, going through peri menopause, all these changes and now ET. Just wondering if its connected somehow. I will eat red meat and chicken, pork in moderation...I think my body must need that heme iron. How would I find out what casued the iron loss?
Do you drink coffee or alcohol? How did you find out about all these cool things like chestnut laundry soap alternative? It's really fun making a lifestyle of this. We're going to be in our 90's, still posing in this website, watch and see. Do you work? And the holistic living is contagious and fun! Thanks for being such an inspiraiton.
Dearest Jschwab! I feel so connected! Thank you for this happy and encouraging message! It is fun to go natural! I no longer feel I’m a slave to the system. A friend told me about the chestnuts. They are so good! I add 1 tbsp baking Soda to whites. Many buy them (crazy when they are covering the streets in October), or washing nuts from India. Unfortunately, all those are being sold to Europe and the Indians no longer have enough to wash their own clothes!!! Sick situation, like so many other things.
I drink 2 glasses of red wine per month, maybe. Unfortunately I drink 3 very light cups of coffee daily. I know it’s not good. I feel it. I’ve achieved so much already and I’ve been thinking that I can keep this little sin going, but I’d like to reduce to one cup daily. I only drink organic coffee. It’s the more pesticide sprayed food on the planet! One question remains: morning or afternoon? 😂
I am not one for plant based. Not yet. Actually I am plant based, since I eat more Veggies, nuts and legumes than everything else. I have anemia (inborn beta thalassemia) and feel sick without meat. Not much, but 2-3 times a week. Black olives, lentils, etc work well for iron. Liver is the best, but only organic. Liver filters everything (also in cows!) ; )
When someone is on an anti-cancer diet, meat is a no-no, but one should eat a piece of liver weekly. Helps blood, etc.
I’m struggling with the mercury detox after having 5 teeth freed of amalgams in 2 months. They were in for 39 years! The teeth inside were dark brown, coloured from the metal. A special cement was put in and must stay in for at least 9 months. It will suck up the last amount mercury that is still in the tooth mass. 6 more teeth will be done in September to November. Then ceramic inlays or crowns. I will also get my root canals removed. One is already out. Another one in June. Dead teeth also hurt the immune system.
After all that, spring 2020, i will seriously try to get on the plant based diet similar to Chris Beat Cancer for at least six months to see what happens (although we don’t have a tumor).
I will also put together a program that will be doable for me. I sent 10 pages of my own notes from different holistic cancer treatments to my cousin in Athens last October after he was diagnosed with stage 3 bladder cancer (his and my father and 2 more brothers out of 5 brothers died of this!). He was clean (after chemo and holistic treatment) within 4 months and did a bit more chemo, since he was able to deal with it well. I’m sure the quick success was due to adding the holistic stuff. He feels super and will continue the holistic treatments to make sure that mother cells are all dead.
I don’t know if this works for ET, but We’ll then find out! Yes. God willing, I hope to still be dancing at 90, the same for you and all others here.
I’m 54 right now. I’m not premenopausal yet! I went to the best gyne I could find to test everything last November! He said, “I’m not sure about your other physical problems, but gynaecologically, I assure you, you are the healthiest woman in Austria and could still get pregnant!” Well, at least there’s something I can boast about! He he.
This is truly a wonderful group. I feel so understood and have learned so much from the others. I will try to get to a seminar in the fall or next spring! Would love to meet others and you!
All the best. Keep in touch and keep smiling! Anag
Oh Thank you so much for this response... I am cutting and pating all of these wonderful recommenations, and saving themin a google doc! You have been so helpful! I am learnign tons!! See you are not from the USA- you know so much more about this thatn I do, we are so toxic over here hahaha-
Are you working??
I have a job that is just too difficult for me...that may be part of my problem. I love so many aspects of it....and trying to get 3 kids through college. ( I am 50, and teach special ed in a very nice school district- but honestly the paper work...)
I can tell you would be one of my besties if we lived closer. You are my inspiraiton! Yes one day we will meet!!
Wow! I grew up near Boston. Yes, the US is poisoned, especially through food beyond belief and Canada, England, if slowly following. Europe is somehow better and Austria is holding pretty tight against GMOs, while being constantly under pressure to accept them. Of course there are GMOs here, but we’ve kept at least the corn out. Where do you live?
I’m not working right now. I left my opera singing career at the pinnacle because of my daughter going to school and my parents being old and sick. I had to take care of life and jetting around the globe was too unstable and I also wasn’t happy anymore. The family was not a family, so I let the career slowly dissipate. That was a trauma in itself. But, looking back, it was the right thing to do.
I’m so glad we understand each other so well and you will see that this goes even deeper. I always wanted to be a teacher and finished my certification in Learning Disabilities and Learning Differences and then also my Masters in the Globalization of Education last summer! I was hoping to apply for jobs and then I had my third TIA and insisted going to the hospital instead of my doctor (she said it was the pinched nerve in my neck) and they found the ET at 823 and 909 a week later. I understand you! The paper work often destroys the learning process. Of course we need to keep track of development, but there are boundaries. The meds have done a job on my energy, but I’ve gotten most of that back by taking CoQ10. It really works.
My daughter is (was) Aspergers and schools over here have no understanding for these kids. They are constantly criticized and seen as lazy or bad kids. Mobbing is a huge problem and they are socially not able to deal with that and are further punished. Heartbreaking!! She had many sign when she was a baby, but the doctors said, no problem, some are like that. She is also highly gifted. She got rheumatism at 2 yrs. after her Meningitis vaccination. After 2 years I cured her through diet. A lady told me about this and I took it to heart. I always refused the chemo (methotrexate) up to the point where the doctor almost slapped me. I was right and such experiences have taught me to question everyone (except God) and dig deep into myself and think. I do believe there might be a cure for us and it is quite simple. We’ll see. Unlike with other cancers, we have time on our hands and can try things out.
8 months after being on diet, my husband got on board and then last August, my 15 yr old aspergers. Although we had made much progress, there was a definite change in her by November and today, she is another person! Aspergers no longer stands in the way, but is a blessing. I am aspergers also and so was my mother and my uncle, who was an important doctor and scientist in the US. He was lecturing right up until he died at 84. We are more susceptible to the environment than other people. If ASD kids go on anti-inflammatory diets, the success in school would be phenomenal!! Im convinced. We need to talk more. Is it possible to write to each other privately through this or exchange emails?
Totally related! Some doctors! I had almost daily ocular migraines until 2 phlebotomies and asa 81 mg.
With a similar diagnosis and being on anagrelide, after I broke my ankle in December I was put on injectable blood thinners which definitely gave me optic migraines, so debilitating. I injected daily as instructed and because they caused me dizziness I did this at night at 10 pm. Then I would be working up by a cracking headache at 3 am that would last all day, and ease towards the evening. I had flashing lights and it looked like I was looking through a kaleidoscope, blurry on outside and clear in middle. I couldn’t concentrate or read and like you I felt like I had been run over. Just after new year I decided to try taking them every second day, as I was more mobile and couldnt get the GP, they only happened every second day.last week I went to GP and had eye hospital check who confirmed optic migraines. Since I stopped the enoxaparin sodium they have gone and I have had five days without them. Maybe you should ask your haematologist team to review your symptoms and meds?.
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