I have Hemiplegic migraines. Attacks only occur on my left side. With each attack I lose vision in my left eye. Although this is common for most FHM suffers, my eyesight in the left eye has not fully been restored. I have seen opthmologists as well as neuro opthmologists and they cannot explain the permanent and rapid loss of eyesight in my left eye. I have had numerous MRI's and CAT scan's looking for tumors, optic nerve damage, etc. Everything looks normal and healthy. It is not a "refractive" problem that can be fixed with eyeglasses or lasic surgery (which I have had and had 20/20 vision from 3 years ago.) Nonetheless, my eyes are tested every few months and my left eye loses more vision after these attacks and does not return when all other symptoms subside. My neurologist and team of doctors have said they have never seen this before. Is there anybody out there going through something similar? Any response would be greatly appreciated!
What kind of doctor is treating you for HM? If it is not a Migraine specialist, it probably should be. You see it's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.
Have other neruological conditions been ruled out? If you haven't read our article on HM, I would encourage you to take a look at it when you get a chance: Hemiplegic Migraine - The Basics.
Is it time for different eye doctors, or at least more testing? Do you have visual fields test? I'm just asking questions here, thinking "outloud" sort of.....
I hope some of this helps, let me know, ok?
Hi Nancy, thank you for your reply. A neurologist is treating me for HM. I am currently trying to see a migraine and headache specialist recommended by this site but am being denied by my insurance carrier. Ms. Robert's book and this site have been very helpful in providing useful information. I plan to appeal the decision. The current team of doctor's (including my eye doctors), I do see are through a large and well respected research hospital. They have tested for all other neurological conditions. I'm left a bit dumbfouded. The eye doctors are some of the best in the country and have tried many tests, including visual field tests. The results are inconsistent except for loss in the periphery of the eye. They say this makes them believe it is vascular/neurological in nature. That is has to be somehow be tied to the Hemiplegic Migraines. However, they don't understand why my vision continues to rapidly decrease, why I'm losing depth perception, why I have pain and pressure behind my eye, and why my eye socket and back of my eyeball feel numb. I've been tested by a corneal specialist, for Glaucoma, and Macular Degeneration. All negative. I've earned the nickname, "the enigma," not exactly an inspiring feeing for a diagnosis. Thanks for thinking "outloud" and just listening. It gets a little lonely sometimes.
Have you had a spinal tap recently? Checked for IIH? It isn't uncommon to have more than one type of Migraine or headache disorder. Here is some information on Idiopathic Intracranial Hypertension (IIH) - The Basics and Headache Attributed to Idiopathic Intracranial Hypertension - The Basics.
Let me know what you think, ok?
Hi Nancy, I can see why you are an expert. I have researched HM extensively since my diagnosis but have not heard of Idiopathic Intracranial Hypertension (IIH.) I realized you could have other headache disorders, (I also have Ice Pick headaches and Retinal Migraines) but had never come across or been told about IIH. Upon reading the symptoms, I realized I have eight out of the eleven listed. And to answer your question, I have asked twice for a spinal tap and have been denied because my condition is not considered to be "viral" in nature. I think I'll ask again! The one symptom that really hit home was the constant headache. In my headache journal, I have logged a headache for the past two years and four months. It never gets better than a three on the pain scale and is constantly there. Usually it's about a 5/6 and it's just kind of normal now. I do take daily Topamax. and have rescue meds for the HM attacks. Wow, I'm really excited to ask my neuro about IIH. Thank you so much for your time, empathy and knowledge. Beth
Well, thank you for your kind words, I really appreciate them.
I wonder if you have any ringing in your ears too? Intractable headache (not responding to treatment) is a key symptom with IIH - and one most doctors don't seem to take into account. They usually look for papilledema. And it is possible to have IIH without papilledema. Teri does, I on the other hand have what they are calling "full optic nerves." Lord help us if we are overweight......
Stand strong about asking for that spinal tap. If your doctor won't help you, we will find you one who will!!
Keep me posted, will you?
What a perfect day to receive your reply. I got notice that I won my apply with my insurance company to see the migraine and headache specialist recommended by this site. A thirteen month battle! She is said to be very good. As for the "ringing," I have a different sound at times. It comes when I am having severe vertigo with the headache and it almost sounds like a whoosh of water. The best was to describe it is like hearing a helicopter propeller whoosh around in my head. Weird? Well, now I have a new doctor to request a spinal tap from and I dare say I'll find out what's so "special about a migraine and headache specialist!" Nancy, I'm so glad to have found you through this site. It's certainly easier to walk this path with kind and helpful people. Beth
Oh goodness.....congrats on winning your ability to see a Migraine specialist. It just stinks that we have to go to SO much trouble to see the right doctor for our heads.
You said you hear a "whooshing" sound? That is another sound that may be associated with IIH. At night when I lay on my pillow, on my side, when all is quite, I can hear my heart beating, sometimes....which we should not be able to do.....
Since you have not posted since July of 2010, I wanted to ask you for an update on your headaches and eyesight. My experience has been similar to yours, my loss of eyesight was gradual but severe over several months while taking a certain migraine medication, and continues to get worse with each of these headaches.
Just wondering if you were helped or were able to regain any sight.
Hi I have Hemoplegic migraines ( i don't have it in my family) and have lost vision in my left eye to, have you progressed any further with a diagnosis for the lost vision and further deterioation? Topiramate has helped with the Hemoplegic migraines and restored vision to the right eye but not to my left and when i get a migraine my vision blurs again. The doctors cannot explain the vision loss.
Is this vision loss only during your Migraines, or is it alll the time? If it's only during Migraines, you might ask you doctor about the possibility of some of your Migraines being Retinal Migraines. It's possible to have more than one type. For more info on retinal Migraines, see Retinal Migraine - The Basics
I hope this helps,
Hi Teri, the vision loss in the left eye has become permanent and the doctors cannot explain why. I saw that someone else had experienced a similar occurance and thought i would ask if they had had any luck.
Hi Teri, the vision loss in the left eye has become permanent and the doctors cannot explain why. Have you had experience of two migraines or sight loss?
Do you know what tritans work well with hemiplegic migraines? My migraine doctor who is a specialist has suggested that i can take them if they get bad enough but no more than three times a week.
Yes, I do know of people with two types of Migraine. Some people I know who have hemiplegic also have Migraine with aura or Migraine without aura. Most people who have Migraine with aura also have Migraine without aura. Personally, I have both Migraine with aura and Migraine without aura.
Have you been to an ophthalmologist? I have permanent vision loss from a rare form of glaucoma called low-tension or low-pressure glaucoma. It can't be diagnosed with the standard glaucoma test, which measures intraocular pressure, because the pressures with this type of glaucoma measure within the normal range. With this form of glaucoma, even "normal" pressures cause damage to the optic nerve. It's diagnosed using the visual fields test. The doctors I saw for this at Ohio State University were doing research on this form of glaucoma, and they felt there was a connection between it and Migraine because a far higher percentage of patients with this form of glaucoma have Migraine than in the general population.
As far as the triptans go, many doctors won't prescribe any triptans for people with hemiplegic Migraine because the prescribing info for all of the triptans say that they shouldn't be used by people with hemiplegic Migraine. Some doctors will use them with people with HM, as your doctor evidently does. For those who take triptans, there isn't any "best" triptan. They each bind to different combinations of serotonin receptors, and which ones work better depends upon how our bodies respond to them.
I hope this info helps a bit. Please keep me posted?
It actually started by noticing the eye problem first not the headaches. I was so used to them and the other side effects crept up on me. I went to the opthamologist but they couldn't find anything except unexplained retinal damage. it took me 5 years to convince my local doctor to send my to a neurologist who knew what they where doing.
I will have to ask him what he think then about the Triptans again. Thank you for the advice. Will keep you posted.