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Chronic Headache, Sensory Overload - Dys Or Cfs Issue?


Bayly

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I have cfs with some dys issues. Have suffered from headaches, sensory overload and brain processing issues for one month and cannot work ( previously worked full time). What I have tried:

Iv drugs typically used for migraine

Migraine rescue meds like Maxalt

In patient administration of Dhe

Klonapin

Neurontin

Muscle relaxer

Guided visualization

Prayer

Homeopathic remedies for headache

Biofeedback

Symptoms ease some lying quietly and are usually most mild in am upon rising. Within one hour symptoms worsen the more I am awake.

Need opinions whether I should wait it out ( similar episodes before but not quite as severe and not as long lasting)

Would a dys specialist be able to offer anything? (Have received lots of fluids, bp and hr normal)

Would a cfs specialist be able to help?

Have neuro who is headache specialist and integrative pcp

All suggestions welcome as well as suggestions of who to see. I live in Kentucky and already saw neuro at Cleveland clinic years ago for same illness. Symptom pattern came on suddenly one month ago after pushing myself to exhaustion. Fatigue not an issue with this pattern.

Many thanks!

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Hi Bayly,

I'm sorry you're going through all of this. I have had all of the same symptoms for years now and also have POTS & CFS. I also went through most of the same treatments you did, as well as vestibular PT, acupuncture and Botox for migraine. Acupuncture was the most successful - it completely got rid of my headaches (without the side effects of an rx). My POTS specialist tells me that 90% of pots pts have chronic headache. Unfortunately acupuncture didn't do as much for the sensory issues.

Do you have hyperadrenergic POTS? I do, and my neurologist/POTS specialist was recently telling me that he feels the sensory overstimulation/integration issues are resulting from an exaggerated adrenergic state. He has Rx'd a small dose of Valium (2mg) for me to take only as needed when I have to go out and be in an environment that will exacerbate sx. It doesn't totally remove the sx, but dampens them a bit. He doesn't want me taking it daily, but its great to have for days I need to leave home. It's the only thing I've found that helps me so far. Ginger chews & ginger tea are GODSENDS for the nausea!!!

Another thought: could you be on any meds that are exacerbating the sensory overstim? I just ask because I recently went off cymbalta and found that, while still v much present, the sensory integration is slightly improved. That means I don't get it as much at home (I used to get dizzy & nauseous just walking around my apartment). I still get v car sick, and extremely dizzy with fluorescent lights, crowds, lots of movement in movies or tv shows I'm watching, etc.

I can tell you that over the years my sx have waxed & waned... and I haven't been able to figure out a true pattern, but they have never completely gone away. Thankfully right now I'm in a "better" phase. I hope you get there soon :)

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Hi Bayly,

That sounds like a rough month! Migraines can be relentless. :(

I have migraines too, with sensory overload and fatigue being the most debilitating of my migraine symptoms. 2 years ago my neurologist put me on amitriptyline for migraine prevention. He said it was the best for migraines with sensory overload. Previously I had been on Topomax, and it wasn't helping at all.

The amitriptyline did help with my sensory overload issues. I took it for about a year. After I was no longer having as severe of migraines, I weaned off of it. It was helpful for migraines, but it caused problems with sleep for me. Once my sensory overload wasn't as severe, I chose to suffer through the sensory problems instead of the sleep problems.

I have also found that a high dose of magnesium helps with headache prevention. It hasn't helped a whole lot, but there has been some benefit.

I hope you can find something that helps you too. Hang in there!

All the best,

Rachel

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What sort of lighting are you being exposed to? A lot of people with ME/CFS or migraine find that fluorescent/low-energy lighting causes these effects. I don't have any fluorescent lighting in my home, though I do have some carefully-chosen LED lighting, and I have special tinted glasses to wear for when I'll be going out and subjected to fluorescent lighting, which is pretty much everywhere these days. They were prescribed by my eye specialist, who's an expert in ME-related eye problems, but you could also try going into an optician's and experimenting with different coloured trial lenses to see which seems to help the most. My current pair have a medium grey tint, that'd be a good place to start. Once I cut down on the light input, it also reduces the sensory overload.

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Batik, Rachel and Dizzyde--all great suggestions! I have to be brief, because doing anything with my eyes is a trigger, so excuse my "shortness"

I am going to try acupuncture and will talk to my neuro optician about tinted glasses and other suggestions he may have. Thanks

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Bayly - let us know how you get on with acupuncture & anything else you try. It took 3 weeks of 2 sessions/week to completely get rid of my migraines, and I need maintenance sessions to keep them at bay. With the high level of sensitivity to meds many of us have it can be a life saver to not have side effects to deal with!! I should add that my acupuncturist is a Western MD with a dedicated chinese medicine practice, who is familiar with dysautonomia & Vanderbilt's autonomic clinic (a real find!), which helped him target my treatment and look at my situation clearly. I had tried a Chinese Dr before him but she just kept telling me it was all anxiety (despite my many attempts to explain pots!). If you don't already have an acupuncturist you like, its worth asking around and doing your research to find the right fit for you :)

Rachel - what dose & type of mag did you take? Did it upset your digestion? This is something I've been curious to look into.

-heather

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Dizzyde-
Where is your acupuncturist? I have tried two, and feel like it could help as so many neurologists and acupuncturists state it is a viable treatment for migraines. Is there a specific style of acup he/she used- like japanese or more ear needles? You can PM me with his name.


I take magnesium for migraines and am waiting to see if it helps with any aspect of them (frequency, duration, severity).

I use a form called Magnesium glycinate which does not cause GI upset. Mg oxide or even citrate are more likely to do that. The ones bound to amino acids are less likely. I take 600 mg which is the suggested migraine dosage...I split it up so it is 200 mg three times a day. From what i have read, you need to give it a few weeks at least to see if it helps. The brand I use is Kal and so far no problems with it.

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Heather,

I take 800mg daily of magnesium oxide. I've never had an upset stomach from it, but that can happen to some people. I tried magnesium malate once, but that didn't work well for me. I'm actually very happy with magnesium oxide. It does cause my intestines to move a little faster, so I like that benefit. My guts are way too slow. If you don't need your guts to move faster, then a high dose of magnesium oxide might not be best for you.


Rachel

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You say you have normal BP, but have you had a tilt table, or have tracked you bp measurements at home? My bp is always 20mm higher at the doctors, just from nervousness.

I was experiencing migraines with a blinding aura almost daily, along with constant headaches. I had tried migraine meds with very little success. When I take midodrine for my low bp (wears off fast), my headaches go away for the most part.

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I have not had much luck with magnesium for that exact same reason so i shall try the one suggested- thanks LMG

I think with my headaches and migraines i suffer too from sensory overload and traveling in the car is awful, does any one find reading very difficult too? To follow the text with out feeling very sick? My heart can even start to jump all over the place once i read or type to much and or look down.

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Dizzyde-

Where is your acupuncturist? I have tried two, and feel like it could help as so many neurologists and acupuncturists state it is a viable treatment for migraines. Is there a specific style of acup he/she used- like japanese or more ear needles? You can PM me with his name.

I take magnesium for migraines and am waiting to see if it helps with any aspect of them (frequency, duration, severity).

I use a form called Magnesium glycinate which does not cause GI upset. Mg oxide or even citrate are more likely to do that. The ones bound to amino acids are less likely. I take 600 mg which is the suggested migraine dosage...I split it up so it is 200 mg three times a day. From what i have read, you need to give it a few weeks at least to see if it helps. The brand I use is Kal and so far no problems with it.

Didn't know if you guys were aware that some forms of mangnesium can cause more issues with depression. This particular type can ---so if you notice your mood going south take a look at the mangnesium. I have a thread on this and a reference to a paper on the different types of magnesium.

Issie

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If you're finding computer use causes problems too, try fiddling with the screen brightness and also the colour schemes. I can't read ordinary books any more, but I'm OK reading ebooks in a largeish font, wider line spacing, and medium grey text on a black background. I avoid black on white on the computer screen wherever possible.

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Thanks for the mag info LMG & Rachel! And Issie too, for the warning... didn't know that about mag.

LMG i'll pm you my acupuncturist info. It's Classical acupuncture more than Traditional Chinese Medicine. TCM is actually a term to describe acupuncture techniques introduced in the West around the 1950s, which were mostly those techniques which western docs would be most comfortable with and could be easily translated. Classical acupuncture uses points and techniques going back to more ancient texts... so you could say there's more to draw from. This is all how my dr described it to me, anyway :)

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  • 4 weeks later...

Hi Bayly!

I hope you're doing better. I too have been helped by Amitriptyline. My neurologisy prescribed it for me as I've had daily migraines for about 8 months now. They don't completely take away my migraines but help a lot with the nausea and the sensitivities to light and sound. (I've had to go up super slowly on the dose as I get some tachycardia while my body adjusts...)

Hope you are feeling better soon!

Lisa

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