Need some feedback on what I have going on with me right now……. I am at the end of my rope with this stuff. I have been to numerous drs, my insurance won’t cover anything dizzy related as it is now considered a preexisting condition.. ugh… and my husband no longer understands….. Anyway I have come back to what feels like the beginning of this nightmare
Last month I was walking and lost my balance. Could not walk straight just like what happened 4 years ago, since that time have been more off balance. Even in bed I feel myself rocking back and fourth
Overall the past couple of years I could walk straight and was feeling pretty good balance wise, it was just light sensitivity that was my major complaint. And that was really bad. combines with some slight off balance stuff.
And now….. last week I was getting very dizzy when a light struck my eye. I also noticed that my eyes were really red so I went to optometrist who said not to wear my contacts for a while. She also said the migraines could be caused from 20+ years of wearing contacts as my eyes are oxygen starved due to continued wear of soft contacts.
Well I am wearing my glasses and my balance is horrible (and thus the anxiety). I have a hard time driving again, and overall feel like I have fallen back into the hole I thought I had lifted myself out of (well at least half way)
FYI: I have a History of Labs/BPPV (no one ever sure) epley and horizontal movements seemed to help. Happened 4 years ago and have been living day to day with mild anxiety in the typical stress vestibular situations, Also came to idea of MAV from this board, followed migraine diet and it helped a little. The past 4 months dealing with neck and shoulder classic Migraine symptoms.
So my questions:
How are BPPV and Migraines associated? Could it be a crystals got messed up again and are causing an aggravation? Should I do Vrehab? That won’t work until the crystals are out? Anyone else have contacts and switched to glasses? Can a return to BPPV take as long to recover as last time?
Anythoughts or smilar situations would love to hear.
I was speaking to hbep this morning about your message. She tried to reply to you but the board was all screwed up and she couldn't log in.
So what I wanted to say is this: you have to approach this thing systematically. Take the hard core science approach I say and blow it out of the water. So let's look at the evidence you're presenting and what that points to:
1) You had an attack of labs or VN four years ago.
2) You are certain you've had BPPV and possibly have it again now.
3) You are now plagued by headaches and neck/shoulder pain.
4) You have light sensitivity which triggers your dizziness and surrealism.
5) Anxiety is a major component to this for you and is otogenic – in other words, when you're not dizzy/symptomatic, you're not anxious.
All that you're presenting points VERY clearly to migrainous vertigo or even this triad of stuff called migraine-anxiety related dizziness. Whatever we choose to label it with, it all stems from the same thing – some sort of neurological problem in the brain, namely migraine. While the light sensitivity is a real drag, it is a HUGE red flag for migraine. The way you describe your anxiety is exactly like I get it, as well as the neck pain and headaches which have become more prominent over time for me too. I never had the headaches either but now get them all the time. I can avoid most of it by staying away from food triggers.
The best way to test for BPPV is to do the MEP for the right or left side. Do it slowly and deliberately and be aware of what happens in each of the positions. If it's BPPV, you will almost certainly have an increase in directional nystagmus in one direction. Your eyes will beat back and forth. There's no mistaking this. It will increase in intensity in the position, max out and then die off (fatigue). You can also have non-specific positional vertigo from migraine and not BPPV. I've had both and have noticed a clear distinction between the two although it can be confusing sometimes. I use the MEP to make the dx. No one is certain why migraine and BPPV are so tightly linked but they are.
Here's something I wrote previously on the migraine/BPPV link:
Epidemiology of benign paroxysmal positional vertigo: a population based study. J Neurol Neurosurg Psychiatry. 2007 Jul;78(7):710-5
- BPPV is probably the most common cause of vestibular vertigo accounting for approximately 20–30% of diagnoses in specialised dizziness clinics. The evolution of highly effective positioning manoeuvres has made BPPV the most successfully treatable cause of vertigo.
- 1003 interviews were completed (that's a lot of BPPV!)
- age of onset was not affected by sex, secondary versus idiopathic BPPV or a history of migraine.
- In a regression model, only age, hypertension, increased blood lipids, stroke and migraine had an independent effect on BPPV.
- a small group (14%) experienced an unspecific sensation of dizziness instead of an illusion of rotation, as previously reported in patients with BPPV confirmed by positioning testing.
- We found the strongest association for BPPV with migraine. This association has been described previously. The frequency of migraine was three times higher in idiopathic BPPV than in BPPV secondary to head trauma or surgery.
- It has been speculated that migraine could cause vasospasm of the labyrinthine arteries, leading to detachment of otoconia from the utricular macula.
So Jade, given your doctors seem to be all over the shop on this (not surprising because migrainous vertigo presents so many different symptoms that you usually get pigeon-holed into a particular doctor's point of view – ie, a psych might just tell you that it's anxiety) you're going to have to take control and start trying meds. I think you'd agree that all the meditation in the world, head rubs or natural alternatives aren't going to stop this at the moment. You have to interupt the cycle with a real med.
Here's the options: Halamagyi (Sydney otoneuro) would likely start you on a tricyclic antidepressant such as Prothiaden or he'd throw Verapamil at you. On the other hand James Adleman (from an NC clinic) thinks Verapamil is not very effective in migraineurs who do not get auras. Prof Hain would start you on either Effexor XR at 12.5 mg or Topamax. According to Hain, Effexor is effective in 80% of vestibular migraine patients. If you were in London and saw hbep's doc they'd probably say start on Propranolol. It's all hit and miss.
I'd be inclined to say you try Propranolol first only because hbep also has the light sensitivity hassle and Propranolol completely cleaned it all up at just 20 mg.
Hope all that helps you to make a decision. BTW, the contact lenses causing your migraine sounds like bull to me. I'd say you were already predisposed to this and VN or labs simply brought it to the surface and perpetuates your condition.
Thanks Scott for taking the time to write all that and Hpeb for her input. Makes sense. Not sure about the meds. My insurance will not cover them most likley and not sure who can manage them. The Dr I saw who told me I have ocularmigraines would not prescribe anything for them.
I agree with you on the alternative stuff. I have been using GABA and found it quite helpful. I just may need to up the dosage until I sort out the med situation.
Regarding contacts, I think the glasses are definately aggravating the situation. You don't have the same peripheral vision as when you wear contacts. Have to sort that out.
So back to the epley and the Migraine Diet.
thanks for your input!!!
I don't doubt that eye wear etc would aggravate everything. It would definitely cause me to feel worse if I had to suddenly wear glasses. If migraine symptoms are in swing I become very fragile visually – PC screens etc set off the visual vertigo etc.
Even without insurance a med like propranolol is very cheap and safe. It's been around for a long time and would be very affordable even without insurance (there is no patent on it now so the generic versions are out). 20 mg is nearly a homeopathic dose too. It's too bad I can't email you directly because I have a great seminar recording by Adleman about all of the migraine treatment options and cost-effectiveness etc. Very interesting. He does say that prop is cheap in the States. I think you can get it from Walmart at a cost of a few bucks/week!
I wanted to respond to your post as I've noticed we had a few symptoms in common. I too have worn soft contacts for over 20 years as I am extremely nearsighted. My glasses gave everything a 'bubble' effect even before I had any vestibular symptoms. Wearing them now definitely seems to exacerbate any balance/dizziness problems that I already have going on.
My original diagnosis was VN which actually seemed to resolve very quickly. I haven't had true vertigo since then but dizziness, unsteadiness and visual issues. It appears to be seasonal, which made me originally think that there was a sinus/allergy relationship, but now think I may have MAV. Does anyone think there is some relationship between summer and aggravated MAV?
I will look into the book and see if it helps. Good luck to you!
Thanks for the info on meds. I will be making an appt with Dr and see what happens. Meds.... not sure I can take the plunge. Have to gear up for it. Sometimes the symptoms I know I have feel better then any caused by some foreign substance. I am not against meds, its just I can't even take cold medicine without a major reaction. And when I tried the lexapro a few years back I was on a micro dose and did not sleep for 3 days. But I am open to having a conversation about it. i just wish i new how to correct the overall imbalance of what causes this stuff, and by that I mean living life med and dizzy free. My overall sense is that we both and many on here have some sort of vestibular damage from an initial labs or BPPV attack, and this has morphed into MAV....
Willhol, thanks for your feedback on the glasses. I think any sort of visual upset can aggravate the migraine stuff. I am going to give the glasses a try for a while. Just in case it has something to do with my contacts because eye strain and oxygen deprivation to cornea has many similar symptoms as all this other stuff. I think if you have any vestibular damage wearing the glasses without peripheral vision can be difficult.
Have a great day or evening everyone
How about the gymnasts in Beijing, now there are some serious healthy balance systems
>>> My overall sense is that we both and many on here have some sort of vestibular damage from an initial labs or BPPV attack, and this has morphed into MAV....
I agree with this. But I do think we already had a predisposition for migraine already. Those without the migraine predisposition get over this in 6 weeks or maybe have some complications requiring VRT and so they go on for a year to 18 months and never look back. I already had migraine stuff going on which showed itself as really nasty head fog and/or neck and shoulder pain before any balance garbage arrived on the scene. I never made the food connection let alone migraine back then. My doctors were always telling me it was "muscle overuse". Yeah right.
I wouldn't be put off by the lexapro at all Jade. I have just come off a trial of lexapro and it did the exact same thing to me. I was wired out of my skull on that stuff, couldn't sleep and was just loony all day long. Cipramil never had that effect. Zoloft did. Every med is different and won't necessarily cause any backlash. Take Gloria for example: she was terrified of touching another med because of an antibiotic disaster but has done brilliantly on Prozac which she introduced very slowly. She hasn't felt better in years.
I just started 5htp today and am sticking it out on St John's Wort (this Ze 117 Swiss formula). I've been feeling very weird the last 36 hours again because I know the lex is completely out of my system now. It always takes exactly 5 days for me to be clean of the SSRIs and then I tough it out for another week. The naturopath I chat to says good things about this 5htp she gave me. We'll see. It's amazing that, for me (and likely you too), by simply correcting serotonin levels, this whole thing can be reduced to a very manageable state. You could try the SJW I'm on before you went down the SSRI route again. Check out "Remotiv" ... may not be available in the States but it'll be under some other name. Just make sure it's Ze 117.