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Overwhelmed/Questions


#1

Hello!

I am feeling overwhelmed at the moment and have some questions flooding into my brain that I am hoping to get some insight on.

  1. If a calcium channeling blocker is not working for me(at least I don’t think so) does this mean that maybe I do not have vestibular migraine?

  2. How long would it take for one to notice the benefits of dietary changes?

Thank you for taking the time to give me your thoughts!


#2

Camille,
Might help to tell everyone which exact med you are talking about.


#3

I am currently on Verapamil 120 mg and Celexa 10 mg.


#4

Camille,

There are plenty of theories as to what causes vestibular migraine, but no one knows definitively. Similarly, we know some of what various meds do, but very rarely know the mechanism or why they do what they do. MAV is a big diagnosis with a lot of symptoms that can occur all over the body. We don’t know exactly why that is. Why some people’s issues are mainly inner ear or IBS or neuropathy or migraine and yet the group of us as a whole have a common set of overlapping vestibular symptoms is still unknown.

So, no, just because a calcium channel blocker doesn’t seem to be working for you does not mean that you don’t have vestibular migraine or some related and similarly treatable condition. Not all meds work for everyone and no one med works the same way for anyone. Effexor turns me into a vampire (tired all day, can’t sleep at night) others experience the opposite reaction. Topomax particularly is a love it or hate it sort of drug. It may be you need to try a different type of drug, a tri-cyclic, SSRI or SNRI or a diuretic. There are many classes of drugs. If one doesn’t work, try another.

Don’t give up, but at the same token it can take weeks to titrate up to the proper dose for you and weeks or months to know if something is helping. You need to give each drug it’s proper trial. Then, if it isn’t working, you need to safely titrate back down and start again. These are potent drugs designed to alter brain chemistry. They require patience and need to be respected. I’m on my third trial in five months. It takes a long time and it’s frustrating. Nobody wants to keep on suffering, but it’s the only way to find the drug or drugs that works for you at the right dose.

I have a specific diet nobody else here does - I maintain ketosis. This eliminates a lot of inflammatory foods for me and many of the migraine triggers. It took a week or two to notice the changes, but they were worth it. Whatever diet you choose, you have to remove the triggers for a few weeks or a month before the inflammation from that particular trigger clears from your system. You can either do that the very long way by removing one thing at a time and see if you get better, or you can go cold turkey on everything you wish to avoid for a month or so and then add things back in slowly, one at a time and never more than one new thing per week. Some reactions are delayed by four days or more.

In summary, this all takes a great deal of patience and fortitude. That’s why we’re here to walk this path together.

Good Luck,

Emily


#5

Hi Emily,

Thank you for your reply. This whole thing does take a whole lot of patience! I don’t think I am a very patient person. I started an elimination diet yesterday that is meant to determine food sensitivities. It is not the heal your headache diet but it still cuts out a lot of foods. Particularly soy, gluten, dairy, caffeine, alcohol, and eggs.

I have been struggling recently with not feeling the best so as I am sure you know, it is really hard to give things a fair try. I also don’t completly understand if I have vestibular migraine or not. I feel like I do, but I am not completly sure. Ive had an MRI, MRA, posturograpjy test, hearing test, blood work, and nothing really seems to come up. I also have not noticied many triggers aside from stress and possibly hormones.

I am honeslty trying not to go mad. I spend so much time just agonizing over this.


#6

Agonizing is a big part of the problem. You have distract yourself with other things or else you’ll drive your MAV symptoms through the roof. My MAV is awful when I’m stressed or anxious.

I personally put not much credence in the migraine trigger elimination diet. I avoid soy, dairy and eggs because I’m allergic to them. I avoid gluten because it causes inflammation in me and that is a migraine trigger. Caffeine and alcohol are definite triggers, at least in the short term. The rest, though, like cured meats or nuts, just don’t bother me, especially when I’m careful to balance my diet.

Get rid of the big 8 allergens for a month or so and see where you are. If you still feel like there is a dietary culprit, start keeping a log to see what you eat and how it affects you. Remember, it can take 4 days for something to show up as a trigger after you’ve eaten it. For example, if I eat eggs I get eczema in 2 days that lasts for 3 weeks.

Treating it like it’s vestibular migraine at least gives you a path forward. It can’t hurt.


#7

@Camille_Chaf, I think the frustration that we all share is that there’s no medical test for “migraine.” At least with other conditions, they can do a test and tell you if you have it or not. Even with cancer they can do a biopsy and either you have cancer, or you don’t.

I recently found a site that has a list of a variety of drugs that are used to treat migraine. It’s worth looking at:
http://www.helpforheadaches.com/articles/prev-meds.htm

Here’s their list:

ANTIHYPERTENSIVES (blood pressure meds)
Alpha-2 agonists:

  • Clonidine, aka Catapres
  • Guanfacine, aka Tenex

ACE Inhibitors:

  • Benazepril, aka Lotensin
  • Captopril, aka Capoten
  • Enalapril, aka Vasotec
  • Fosinopril, aka Monopril
  • Lisinopril, aka Zestril, Prinivil
  • Moexipril, aka Univasc
  • Perindopril, aka Aceon
  • Quinapril, aka Accupril
  • Ramipril, aka Altace
  • Trandolapril, aka Mavik

Alzheimer’s/Dementia Medicaton:

  • Memantine, aka Namenda

Angiotensin II Inhibitors:

  • Candesartan, aka Atacand
  • Eprosartan, aka Teveten
  • Irbesartan, aka Avapro
  • Losartan, aka Cozaar
  • Olmesartan, aka Benicar
  • Telmisartan, aka Midcardis
  • Valsartan, aka Diovan

Beta Blockers:

  • Acebutolol, aka Secral
  • Atenolol, aka Tenormin
  • Betaxolol, aka Kerlone
  • Bisoprolol, aka Zebeta, Emconcor
  • Cartelol, aka Cartrol
  • Labetalol, aka Normodyne, Trandate
  • Metoprolol, aka Lopressor
  • Nadolol, aka Corgard
  • Penbutololm aka Levatol
  • Pindolol, aka Visken, Syn-Pindolol
  • Propranolol, aka Inderal
  • Timolol, aka Blocadren

Calcium Channel Blockers:

  • Amlodipine, aka Norvasc
  • Bepridil, aka Vascor
  • Diltiazem, aka Cardizem, Tiazac
  • Felodipine, aka Plendil
  • Flunarizine, aka Sibelium (Canada)
  • Isradipine, aka DynaCirc
  • Nicardipine, aka Cardene
  • Nifedipine, aka Adalat, Procardia
  • Nimodipine, aka Nimotop
  • Nisoldipine, aka Sular
  • Verapamil, aka Calan, Verelan, Isoptin

ANTIHISTAMINES:

  • Cyproheptadine, aka Periactin
  • Pizotifen, aka Sandomigran (UK)

ANTIDEPRESSANTS
Tricyclic antidepressants (TCAs):

  • Amitriptyline, aka Elavil (discontinued), Endep
  • Amoxapine, aka Asendin
  • Clomipramine, aka, Anafranil
  • Desipramine, aka Norpramin
  • Doxepin, aka Sinequan
  • Imipramine, aka Norfranil, Tofranil
  • Nortriptyline, aka Pamelor, Aventyl
  • Protriptyline, aka Vivactil
  • Trimipramine, aka Surmontil

MAOI Antidepressants:

  • Isocarboxazid, aka Marplan
  • Phenelzine, aka Nardil
  • Tranylcypromine, aka Parnate

Selective serotonin reuptake inhibitors (SSRIs):

  • Citalopram, aka Celexa
  • Escitalopram oxalate, aka Lexapro
  • Fluoxetine, aka Prozac
  • Fluvoxamine, aka Luvox
  • Paroxetine, aka Paxil
  • Sertraline, aka Zoloft

Selective serotonin and norepinephrine reuptake inhibitors (SSNRIs):

  • Duloxetine hydrochloride, aka Cymbalta
  • Venlafaxine, aka Effexor, Effexor XR

Other Antidepressants:

  • Bupropion, aka Wellbutrin, Zyban
  • Mirtazepine, aka Remeron
  • Trazodone, aka Desyrel

Attention Deficit Hyperactivity Disorder Meds:

  • Dextroamphetamine, aka Adderall
  • Atomoxetine HCl, aka Strattera
  • Methylphenidate HCl, aka Concerta, Ritalin
  • Pemoline, aka Cylert

ARTHRITIS MEDS
Cox-2 Enzyme Inhibitors:

  • Celecoxib, aka Celebrex

MUSCLE RELAXANTS:

  • Carisoprodol, aka Soma
  • Cyclobenzaprine, aka Flexeril
  • Lioresal, aka Baclofen
  • Metaxalone, aka Skelaxin
  • Tizanidine, aka Zanaflex

NEURONAL STABILIZING AGENTS (antiseizure meds)
Many people call this class of medications “antiseizure medications.” Actually, these meds are neuronal stabilizing agents. They work to stabilize the neuronal activity in the brain. Considering that Migraineurs have overactive neurons in the brain that, when a trigger is encountered, start firing in a wave and start a chain reaction that produces the symptoms of a Migraine attack, it makes sense to use them for Migraine prevention. These meds are only antiseizure meds when they’re being used to prevent seizure activity.

  • Carbamazepine, aka Tegretol
  • Clonazepam, Klonopin
  • Clorazepate, aka Tranxene
  • Divalproex, aka Depakote
  • Gabapentin, aka Neurontin
  • Levetiracetam, Keppra
  • Lamotrigine, aka Lamictal
  • Oxcarbazepine, Trileptal
  • Tiagabine, aka Gabitril
  • Topiramate, aka Topamax
  • Valproate Sodium, aka Depacon
  • Zonisamide, aka Zonegran
  • Pregabalin, aka Lyrica

ERGOT ALKALOID:

  • Methylergonovine, aka Methergine (the only ergot used as a preventive)

LEUKOTRIENE BLOCKERS:

  • Montelukast, aka Singulair
  • Zafirlukast, aka Accolate
  • Zyleuton, aka Zyflo

OTHER:

  • Baclofen, aka Lioresal
  • Botulinum Toxin Type A, aka Botox
  • Memantine, aka Namenda

DIETARY SUPPLEMENTS:

  • Coenzyme Q10
  • Feverfew
  • Butterbur, aka Petadolex
  • Magnesium
  • Vitamin B2
  • 5-HTP (Check carefully with doctor because of interactions with meds including triptans and SSRIs)
  • Lecithin
  • Melatonin

#8

Wow, that is quite the list! I have tried four medication total as of right now. It is frustrsating to not know for sure what is going on.


#9

Also, do you think I need to get every test to rule out VM? I havnt done the VEMP testing but most others. I am just afraid that if I don’t do everything, maybe I will end up treating the wrong thing or something.


#10

It’s usually the other way. VM is a diagnosis of exclusion. We eliminate everything else and end up at VM.


#11

Sorry, thats what I meant. Do you think I should have more testing done? I really do not want the caloric test.


#12

Caloric testing isn’t fun, but it’s only an hour or two of unhappiness (including that part where you wait to feel better). I was glad I had it done because of its utility for helping focus my vestibular rehab therapy.


#13

Ugh, Im scared. My doctor doesn’t want to make me go through the misery of it. She said a lot of people can feel worse afterwards. I just feel like there is more I should do.


#14

You need to do whatever gives you mental comfort. The worst case is you get vertigo and nauseous. Isn’t that where we live?

If I get asked to do it again, I won’t eat beforehand and will take a Meclizine on my way out the door.


#15

That’s true. I don’t know. Maybe there are other tests that I can do that won’t be as uncomfortable.


#16

What are you hoping to learn from additional testing?


#17

I don’t know, maybe to see if something is wrong with my inner ears? I had a posturography test which came out good, my doctor said. And MRI a while back now, which was fine. An MRA, to check blood vessels which was fine. Blood tests(anemia), otherwise fine. Hearing test, which was fine. And some simple neurological exams which were also fine.


#18

That’s pretty much VM in a nutshell. Most of us have a battery of tests that come out normal. Most of my tests were normal, but not all. My caloric testing was abnormal (hearing loss on the right side with differential function left to right), as was my MRA (vascular loop on the mid-branch of the trigeminal nerve on the left) and my x-rays (significant atlas subluxation). I still ended up in pretty much the same boat with the same treatment options as everyone else with VM. We can’t test our way out of VM. We can accept the diagnosis and embark on the long process of healing.


#19

I guess that is somewhat good to know then, since I am hesitant about getting more testing. I just want to make SURE I have VM, I guess. My doctor thinks it’s “atypical migraine” which I think is the same thing.


#20

Yeah, same thing.