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Struggling with symptoms!

I posted this originally under “post my story” but figured I would post in general discussion to ask for more input! I am 30 years old and new to this forum. I began to have the “classic” migraines with aura when I was a teenager. They would begin with aura which led into a severe headache, nausea and vomiting. I couldn’t tolerate light or sound. My migraines were so severe that they would often lead me to the ER. They were typically triggered by bright/flashing lights and food. My neurologist put me on a daily dose of verapamil which I took for a year and my migraines disappeared so my neurologist discontinued my use of the verapamil. Around this same time, I began using birth control pills to regulate hormones so it was either the verapamil or the regulation of hormones that did away with the “classic” migraines - until February of this year!

I had my first child in August of last year and was nursing him when I had my first classic migraine with aura in 10 years in February. It was the same as it was when I was a teenager - aura, severe headache, nausea and vomiting. Needless to say, I was unable to nurse my son that day which led to eventually weaning him throughout February. Around the same time of that migraine, my eyes began to “jump” or “bounce” about once a day - typically in the middle of the night when I was nursing my son. As an aside, he is not a very good sleeper so since August, I have been up every few hours with him throughout the night. Back to my vision - for example, I would be looking at my phone and my eyes would seem to jump or get off track and then it would correct itself quickly. It started doing it once a day then twice and then it continued with more regularity until it was doing it pretty constantly during the day and night. I also noticed that I would get a bit off balanced at night when I walked to get up with him. This continued throughout February until the first week of March when I began having a bit of dizziness and tingling in my hands and feet. I went to the ER to get it checked out and they did blood work (everything was OK except low potassium - potassium supplements helped but my levels keep dropping after I stop the supplements) and a CAT scan which was OK as well. The ER doctor told me he believed it might be something he referred to as a “complex transient migraine” - he just said it was some variant type of migraine without a headache. He referred me to an ophthalmologist and neurologist to make sure and to rule out anything else like MS.

The ophthalmologist said everything looked fine with my eyes so that was reassuring (no optic neuritis which is a symptom of MS - I also don’t have double vision which is another visual symptom of MS). Then I went to see a neurologist who after a normal neurological exam said he also believed it was a type of migraine disorder but wanted to make sure so he ordered a brain MRI. The radiologist report said it was “suspicious of demyelination” but my neurologist read the actual brain MRI scan and said that the couple of white spots were due to migraine. I read on this forum that apparently migraine can cause white lesions that mimic MS - which is also what my neurologist said. He also did a nerve conduction test and everything was normal. So he prescribed verapamil and nortriptyline to see if that would control what he referred to as a vestibular migraine/migraine associated vertigo. I began at 10mg of nortriptyline and it gave me insomnia and didn’t help my symptoms, so he increased me to 25 mg last night. He also suggested that I repeat my brain MRI in 6 months to 1 year just to make sure. When I went to see my neurologist for the first time, my symptoms were then jumpy/bouncy vision, dizziness, head rocking/moving, disequilibrium when walking, extreme fatigue and tingling hands/feet. During this time, my hormones also hit rock bottom. I had a female hormone blood panel done and I had NO hormones in my system, which my neurologist said could have caused all of this to rear its ugly head. He believes that regulating my hormones may help a lot. Up until I got pregnant with my son, I was on birth control pills since I was young, then I was pregnant and then nursing, so my hormones were pretty much regulated until I started weaning my son/losing sleep from him being up all night.

After seeing the first neurologist, I had two more “classic” migraines with aura - one so bad that I ended up in the ER because of the pain. During this one, my hands and feet actually went numb - not tingly but numb! Given all of my symptoms and the brain MRI, I wanted a second opinion so I went to another neurologist. He did another neurological exam, said something about one of my toe reflexes (which my first neurologist rechecked and said was fine) and then ordered a spine MRI (cervical and thoracic) and an evoked visual potential because he believed it was MS. He looked at my brain MRI and said he thought the white spots looked like MS to him, but when asked if they could be migraine, he said it was definitely possible. My spine MRI and evoked visual potential both came back normal - thank goodness! During all of this testing, my symptoms began to improve - the tingling all but went away, the fatigue was gone and all that was left was a bit of dizziness, head rocking, disequilibrium when walking and just a little jumpiness in my vision. The second neurologist said that because my other tests came back normal, he would not suggest a spinal tap but would just repeat the brain MRI in 6 months to 1 year - although he appeared to be much less confident in the vestibular migraine/MAV diagnosis (he actually didn’t really give it much credit at all) and more about the possibility of MS.

Recently, the fatigue has eased up a bit but the dizziness, disequalibrium when walking and jumpy vision has continued. I also feel as though my head is twitching a bit and my speech feels jumbled. Last night, when I was trying to sleep, it felt as though an electrical current was coursing through my body. Any little noise would make me cringe.

I have also been to an endocrinologist who again found that my female hormones are extremely low (at post-menopausal levels) and that the hormone aldosterone is at zero. He is doing further testing to see how to properly address my hormones.

So after all of the testing and appointments, both neurologists arrived at the same recommendation - wait 6 months to 1 year and repeat the brain MRI while treating the symptoms with verapamil, nortriptyline and vestibular physical therapy. All of that being said, I would love any input that anyone may have!!

Hi so sorry that you are struggling so badly at the moment. Hormones were to blame for my huge attack in 2011 which I haven’t recovered from yet. My body went through the menopause without me knowing and my hormones had gone ridiculously low and began having hot flushes. My dizziness went through the roof and led to an attack that took my balance completely and had to learn to walk, move and live all over again. I began with HRT immediately after the attack but unfortunately maybe was too late for me - so please take any hormones you can now to level them out. May take a while to level them out but may just help your symptoms long term. I so hope you can get some relief soon. Angela

angela have u started topamax yet? hows it going so far?

hmmm yeah i would treat the hormones too. do you feel like more symptoms keep adding on? it sort of sounds like it. I am sorry you are going through this, i am sure it must be totally stressful to deal with and wondering. i dont really have any advice but i hope you get better soon. to me it sounds like hormones but i dont know anything.

No Sarah not yet. The consultant was writing to my doctor to prescribe the tablets. I got the copy letter today so will make an appointment to see my gp this week and begin. It was funny (well not hilariously funny :)) but made me smile anyway, in his letter he said if I don’t get on with the side effects to come off them and start again on a lower dose!! Why then do all these doctors prescribe the higher dose to start with if the majority don’t take to the side effects? Anyway going to suggest to my gp that I start on lower dose, as my forum pals have advised. YOU ALL know better than them!! from bitter experience some times.

How are you doing Sarah, how are your symptoms at the moment?

yea with the topa if u can tolerate the initial dose which prob is 25 mg I would just split the pills in half. I’m not doing well- waiting to start a new med- if this next one doesnt work I am giong to ask if i can start topa again. For some reason this first time I got this weird eyelid spasm that freaked me out …i seem to get the most random side effects!!!

What are you taking at moment? Did you come off topa because of the side effects? Drugs are so odd Braren’t they. So different for each of us. I am such a Googler looking for a side effect that may be so rare but will put me off taking the tablets. I hate a phobia of being sick so any drug with that side effect I won’t take. I am such a bloody pain to myself but I am desperate to get my life back so will try anything now. Your advise on taking it slow I will definitely take sounds a good plan

Angdunc, you still here? Concerning your hormones, mine are the exact same! The endocrinologist thinks that I may have Addison’s disease (not enough cortisol). Mine is autoimmune. My ACTH was over 200, Pregnenalone and DHEA all low. I’ve always had hot flashes, starting in my 20’s. My headaches are definitely hormone related too. Did you ever find out why your hormones are so low? Anyone else have an autoimmune disease?

Alex

It’s six years almost since her last post so I very much doubt it. A few do pop up and reply if they pick up the notification but not many. You will find others on here who suffer various autoimmune conditions. Suggest you try running a Search (magnifying glass icon) and take a trawl. VM root causes are still only at the theory stage. No definite answers as yet.