I’m new to the boards so be gentle
Go right ahead! Either in this thread or the ‘post your story’ thread. We’re all ears!
I’m always reluctant to get into the internet diagnosing, especially when you’re under the treatment of one of the tops guys in the world - Dr Hain. That’s his job, not ours.
With that caveat in mind, yes, a lot of your symptoms do sound like migraine, also, like Dr Hain says, he can’t think of anything else (meaning he’s ruled out a bunch of other possibilities), also your family history of migraine.
What does Dr Hain say is the ‘next step’ for you?
He wants to try Effexor. My other neuro said topamax. My sis has been on Elavil with much success and my mom is on Lexapro and Atavan but still gets dizzy spells. Unfortunately I have a family that gets that dizzies with no true blue diagnosis. Im reluctant because I’m on so much crap now. I dont know how many people on these boards actually know what POTS/Dysautonomia is but it’s basically a nervous system dysfunction that they treat with a lot of BP drugs. Florinef, midodrine, metoprolol etc…and a lot of these side effects I believe are headaches. it’s either feel like garbage and half way function on these meds or be bedridden. Hain wants me to drop a drug to add effexor but i really can’t afford to drop anything i’m on right now. I’m at a crossroads. I tried Paxil last year and my body went bonkers, 130 pulse and had constant tremors for 3 days and I quit.
Hello. Did your vertigo and headaches begin after your Dysaut. symptoms? I once read that dysaut. is a common manifestation of migraine for some patients, not always the other way around. I will try to locate the reference to this. I saw where loads of people on the Dinet forums complain of vertigo and classic migraine headaches, so I am curious as to how that all works. Is there any way the headaches and vertigo could be a side effect from the meds? Are you on a particular diet?
I wonder if Cymbalta would be tamer for you. It is an SNRI like Effexor, but with fewer side effects. Cymb still makes people jittery at first, but that goes away pretty quickly, especially starting at a low dose. :idea:
I work with an electrophysiologist(cardiologist) that diagnoses POTS, NMH, dysautonomia. I believe these are true disorders that can be ruled out based on testing, but they are very much like migraine, in that many people continue to have symptoms despite the trial of meds, salt, and fluids (depending on their diagnosis). We see a lot of young patients where I work as there have been no relief of symptoms, and they continue to feel strange, many times close to passing out (pre-syncope) or fully passing out (syncope). I can’t help but wonder if some may have migraine, and that is why their treatments fail and they continue to suffer from the symptoms. I am working today, and I am going to ask him specificially how he identifies these patients. I know many of his pateints are diagnosed after a full battery of tests including a tilt table test. Fortunatley many of the treatments excluding salt are similar to the treatment of migraine. These patients remind me of many of us, with constant symptoms, out of work, and just plain miserable feeling. Dont get me wrong, I know there are criteria for these diagnoses as some of them you stated you have are tachycardia and low blood pressure. (tachy not being a migraine symptom, unless possibly from anxiety episodes). In addition all of the disorders that fall under dysautonomia carry headache as a main symptom. I would feel that the Dr treating you has significant knowledge of this and has appropriately diagnosed you, but since migraine runs in your family, you may be dealing with both. Which one is driving the other is probably the question. Hopefully after you start on a new med you will feel some relief. But in the meanwhile make sure you are drinking tons of fluid! (for both dysautonomia and migraine)
The headaches began with the dysautonomia. I never had a headache in my life! Now I have dull ones constantly. My episodes began before I took any meds so I don’t think its the meds doing it but they could be exacerbating them a bit. What makes no sense is I’m already on metoprolol and that doesn’t seem to be touching it. It seems like this crazy slew of bp, headaches etc just all stormed me at once with no rhyme or reason. I’m a former college athlete, was in great shape my entire life and never sick. I think hain’s thought with the effexor is it raises bp and there is a possibility I can get off all my bp meds with it. Who knows? If it is migraine does walking help? B vitamins?
I will occasionally see silver flakes when I’m in the shower or bath, I don’t know if this is a manefestation of a migrane as well?
You guys are fantastic by the way, you have been more help than any doc so far!
Former athlete myself. It feels like an extra insult when our bodies do this to us.
Suppose this is migraine - given your family history, there’s a good chance it’s at least in there, even if there’s something else going on too. For many of us, there’s a “Big Bang” thing that happens (and we can be just sitting when it happens - that’s what I was doing too!) and after that our brains are somehow switched to a level of greater sensitivity. There’s usually no way to know why it happens when it does, but for many of us the genetic predisposition is the reason that it happens at some point in our lives. Some of us do have a clue why it hits when it did - I was in perimenopause and had some clear signs that I was having hormone swings that went to extreme highs then plummeted, and a dramatic change in hormone levels triggered my first whopper of a dizzy spell. (I figured that out after the fact.)
Walking is generally recommended for all migraine patients as a safe way to get regular exercise that is less likely to be problematic, as vigorous exercise can be for some migraineurs.
Obviously I’m not doctor, but the family history looks like a good indicator to me. Don’t rule out that migraine wouldn’t necessarily exclude the previous diagnosis, sometimes migraine is triggered by another condition.
My grandmother had migraine and dizziness. My mother experiences dizziness very occasionally, tinnitus and headaches. The fact that your sister and mother are members of the no-one-wants-to-be-a-member dizzy club, means that migraine is a very strong possibility. I am definitely a migraineur and it’s clear I’ve inherited it.
the new info for the day is I tested positive for Cat, Ragweed, Cottonwood, and Maple trees. I’m wondering if this could also be a trigger for migraines or just dizziness in general?