Has anyone had eye pain that improved once they began treatment? I have eye pain in only right eye, I have seen ophthalmologist. retina specialist, and neurologist. I’ve been treated for migraines, but a dull pain still remains, My MPN specialist said it may be side effect from MPN ?
Any thoughts?
Hello Bears23, I had a bout of severe eye pain in my left eye, It turned out to be TEMPORAL ARTERITIS, it was also connected to Vertigo and it can be serious , I have to carry meds in my purse just in case the pain comes around again and if it is very bad get myself to the hospital quickly so please push for a specialist. I have PV and considered to be high risk. Good luck, hope you get more help. I am lucky to have found a doctor who recognised the symptoms. Stay safe.
Thanks, I have some doctors that communicate with each other, but others that do not. I have an appointment with a neurological opthalmologist on Monday.
Given that you have ruled out other causes, that does sound like a MPN-related microvascular issue as the MPN Specialist suggests. Some people find symptom relief from reducing the tendency of blood cells to stick to the vascular endothelium. This can be as simple as increasing the low-dose aspirin to twice/day. Your MPN Specialist would be the best person to talk to about this.
I have experienced visual migraines from another cause. I have found Ubrelvy, a CGRP inhibitor taken PRN, to be very effective. Note that this may not apply to your form of pain. I consulted with a neurologist who specializes in treating migraine. Not all do have this expertise.
Wishing you success in treating the eye pain.
Thanks so much, you are very knowledgeable! I have an appointment with a nuero-ophthalomologist on Monday. I see a neurologist also, and currently being treated for migraines (gabapentin). Not 100% sure that the symptoms I have been currently dealing with are related to migraines or MPN?
The neuro ophthalmologist should be able to help sort things out. i see one of those too. One of the many "ologists" on my care team.
Migraines can occur due to the MPN as a microvascular symptom. There are two types of migraines that can affect visions. Visual Migraines are brain-based and typically affect both eyes. Ocular Migraines are retina-based and typically affect only one eye. There can be a variety of symptoms, including pain, scotoma, scintillation, diplopia, and palinopsia. Here is a bit of information you may find helpful.
Visual - Ocular Migraine
allaboutvision.com/conditio...
webmd.com/migraines-headach...
brighamandwomens.org/neurol...
Ocular Manifestations in Patients with Philadelphia-Negative Myeloproliferative Neoplasms ncbi.nlm.nih.gov/pmc/articl...
Gabapentin can be very effective in reducing neuropathic pain but cannot prevent the migraine from occurring. The CGRP inhibitors work differently and can actually help to prevent certain types of migraine. I do not know whether this an appropriate consideration for the type of eye pain you are experiencing. The neuro-ophthalmologist should be able to help sort that out. Here is some information on CGRP inhibitors in case you are interested.
drugs.com/drug-class/cgrp-i....
webmd.com/migraines-headach...
It is really hard to figure out what is MPN related and what is caused by something else. Please do let us know how you get on and what you learn. There are others with MPNs who experience similar symptoms. Everyone can benefit from your experience and the knowledge you gain on your journey.
Thanks again! I will review everything you included. I am definitely going to discuss CGRP, at next neurologist appt!
I truly have no idea whether a CGRP inhibitor is an appropriate consideration in your case. I do know that with the type of visual migraine I experience it eliminates the migraine within 1 hour. My niece, who experiences debilitating migraines, is using an injectable CGRP inhibitor to prevent migraine and an oral for breakthrough migraines. It is the most effective migraine treatment she has used.
Wishing you success in figuring out both the cause and treatment for the eye pain you are experiencing.
I sometimes have intense pain in left eye- I do have dry eyes and damaged cornea-which am treating with hycosan plus eye drops.
And also using Thealoz eye drops (gel) drops.
Yes, suffered very badly with eye pain & very regular migraines prior to ET diagnosis and subsequent treatment with interferon injections. They have completely disappeared (touch wood) since treatment commenced.
I am considering starting treatment (low dose aspirin now). I began getting migraines 3 years ago, and headaches, and eye pain more often. Glad to hear the treatment has helped you with those issues.
MPN specialist or not?
Starting Pegasys soon
MPN or Haematologist
Painful hip and leg pain
