I think I have mav but doctors won't help me

Hello. I have been trying to get help for a bunch of neurological symptoms. The worst of which is dizziness, but there are assorted other symptoms as well: brain fog, tingling in my calves, tinnitus in both ears, random spiral patterns that fly across my field of vision, or else a rotating circle that stays in place around the periphery of my field of vision, a tingling sensation in my scalp. Occasionally, I get an incredibly severe neckache with an agonizing headache that spreads from the back of my neck forward, even “digging in” to my eyes. But since this headache is rare, I never considered migraine. It has taken a lot of googling to get me to even consider migraine.

These symptoms are terrifying to me, but most doctors I go to do one of three things: 1) they run a panel of tests which always come back negative, 2) they tell me that it is “stress”. That is a convenient diagnosis for them, since I do have generalized anxiety disorder, but I have had anxiety my whole life and these symptoms are new. 3) The worst thing some of them do is accuse me. The last doctor I saw told me I was making symptoms up to get attention (after the labs he ran came back negative; after all if his tests say I am healthy I must be lying.)

What should I do? I can’t afford more futile tests and doctors visits. I need a doctor who will treat and stop the endless cycle of pointless tests. I have seen both an ent and a neurologist. I thought a specialist would be more helpful but so far not.

I have an old prescription for celexa sitting in my cabinet (for the anxiety disorder) but SSRI meds have typically worsened my anxiety. Celexa was particularly bad. I took one pill and had a panic attack the next day. But I am desperate, and no doctor will help me.

Kinghippy,

Next time go armed with information. Take these two papers which can be found in the thread above titled Vestibular Migraine Survival Guide 2014:

http://www.mvertigo.org/articles/vertigo_and_migraine2011.pdf

http://www.mvertigo.org/articles/recognising_vestibular_migraine_HART_2014.pdf

When starting a medicine for this you must start at a low dose and increase gradually over time. It is not recommend to start on a full dose.

Good luck. S

Thanks for your response.

My doctor had prescribed 20 mg of celexa for anxiety. I have not been taking it because it ramped up my anxiety 1000%. But since you said to try a low dose I cut the pill in half and only took 10 mg. The side effects have not been as bad as before. No panic attacks. But I still feel really funky in the head And i didn’t sleep well at all. I am not sure that this is tolerable even at a low dose.

Update: I cut the 10 mg half in two and took only 5 mg of celexa and had no side effects :slight_smile: Well other than a little dry mouth but that is tolerable. So maybe I can finally give a drug a chance.

I have already changed my diet after reading Heal Your Headache. I also added 400mg magnesium. I experienced a little relief from those changes but nothing substantial (because I think my anxiety is a bigger trigger than anything I eat.) I would say I went from daily dizzy to dizzy 3 or 4 days a week on average based on diet changes only. Since I drive for a living that’s not good enough. I need to get to 90% or better.

I am going to give it a week at 5 mg then see if I can tolerate a move up to 10 mg

Good result. See if you can slowly build it up. Cipramil (Celexa) is effective for MAV for some people. Worked for me!

Yeah. I am happy. I am going to see my neurologist tomorrow and ask her for nortriptyline. She doesn’t want to treat for migraine though until she runs a billion tests to rule out everything else. The Heal Your Headache book recommends NOT doing all that testing though. Any idea of how to get her to give up the pointless testing? (she wants to do MRA, MRI, eeg, and I think emg? The last one I am not sure of.)

I just wanted to chime in here. Have you not had an MRI yet? I know that was the first thing my ENT did for me when I first went to them with my symptoms. Fortunately it came back negative and I was later referred to my neurologist but I think that you would need/want to rule out anything critical. More than likely it’s nothing major but I would want that piece of mind. Diagnosing migraine also involves ruling other things out. I too have had a bunch of tests which all came back negative but I’m glad things were ruled out.

Dizzybee,

Well there are several issues. First the Heal Your Headache guy specifically says that MRI’s are us usually a bad idea because of the risk that something benign will be discovered and the treating physician will think it is relevant. Second, my kidneys are not in great shape. So they will have to do the MRI without contrast and I am wondering what the point is. Third, the longer we go without treating migraine, the longer it will be til I find relief.

Kinghippy, I get it :slight_smile: Good luck!

I think the issue with her is the tingling in my feet and the leg cramps. She told me Tuesday that she has no doubt that I am having migraine, but she thinks the feet are another issue. So I have to get an MRI after all

This week has been a really good week for me. I would say I am at 75%. Yesterday and today have been nearly perfect. Only about 10 minutes of dizziness yesterday morning. Nothing today. It is too early (and the dose is too low) for the celexa to be working, so I have to assume the dietary changes and the magnesium are making me better. I have been doing the diet and magnesium religiously for about a month. The leg cramping is much better too. My family doctor checked my minerals (nothing showed except a slight deficiency in vitamin d. But I asked her to check magnesium and she said that there isn’t a good test for magnesium. I can only assume that the leg issues were magnesium deficiency, and that’s why the legs are getting better along with migraine.

I asked her for nortriptyline, and she initially agreed but by the time I got out of my procedure she had changed her mind. If she thinks I am having migraine, why won’t she treat? I can only assume that she assumes (quite correctly) that if she treats migraine successfully I will never go in for the MRI