Anyone with migraine experience....

[jtab]

Hello all, I’ve been suffering migraines on and off my whole life but recently a new symptom has started accompanying them, and it’s really scary and need to know if any one else has this or can shed some light on the subject.

Its only happened twice but before a migraine comes my vision starts getting spotty and bright light like the phone screen is hard to see. It’s patchy black and THEN... the good and scary part... I start getting strobing lights out of the corner of my eye, one eye..my right... like a ceiling fan or kaleidoscope. Sometimes it changes to lightning bolts or if I’m really  lucky..just flashing blue and white, even red like a damn spaceship is landing or just simply hovering in my side right vision field. Then the migraine hits for hours!!!!  I don’t like it , simply put. I know it sounds like I’m crazy. I assure you that I‘m not, or perhaps I am?   Does anyone else ever have this or have knowledge on the subject?

 

[Whoopiegoldburgg222]

@jtab Ive never had migranes before , but if you were a family member I would tell you to go see a doc asap IF you are able to. That just seems so uncomfortable, sorry you have to deal with that.

 

[jtab]

@Whoopiegoldburgg222 Thank you friend. I have a dr appointment tomorrow, so I will definitely mention it as it is very concerning.  

 

[Whoopiegoldburgg222]

@jtab Hoping you get some relief soon!

 

[DoomKitty]

@jtab Sounds like retinal migraine (Retinal Migraine).  Definitely talk to you doctor about it.  If it was just regular migraine aura it should happen in both eyes.  Take care and let us know what you find out please.

 

[jtab]

@DoomKitty thank you for your reply.  It’s definitely a scary thing.  In my 35yrs, it’s only happened twice, so not only being a new thing but also ultra weird, it really freaked me out.  I’ve been having several odd health issues lately, in the past 6mnths, that the drs can’t explain, so it’s just another thing I need to get figured out. I certainly appreciate your reply and knowing that it’s actually a real thing (Migraine Aura) that others have , makes me feel a bit better.  But I get what you’re saying about it just being in one eye.

 

[Clarissa]

@jtab I'm pretty sure that's what doctor's refer to as an "aura".  These are sensations such as flashing lights or zigzag lines or other visual disturbances which precede a migraine.  It's like an alert system.  Most migraine medications only work if you do have an aura before a migraine because you need to take the medication during the aura.  I usually get 2-3 migraines per month, but no aura's for me so I can't use any of the prescription drugs available.  It usually just starts in my left eye and progressively gets worse (it will start pulsating), so if I don't get Excedrin before it hits my right eye then I'm totally fucked.  But I find I'm okay with an extra-strength Excedrin and like an hour under the covers in the pitch black.

But it sounds like you are a good candidate for one of the many prescription drugs available.  You take it during the aura so you don't get the migraine. 

 

[DoomKitty]

@Clarissa @jtab "Migraine aura"  happens in both eyes, cuz its source is the brain.  Retinal migraines happen in only one eye cuz the source is the eye itself.  There are many underlying conditions that can lead to retinal migraine so talking to a knowledgeable doc is very important! 

 

[jtab]

@ClarissaThank you.  All of this great information is really helpful and easing.  I had no idea what the hell it was, and it freaked me the hell out! I was pretty sure that my wife thought I was crazy while I was describing it, and I even questioned myself a bit lol .  Migraines are definitely no fun!  They are so so so painful.  I too have to be in pitch dark with ice or a cold can or something similar put to my head or the nausea comes.  I have found excedrin to be a game changer. I invested in the huge $30 bottle, but it was definitely well worth it.

@DoomKitty a knowledgeable dr is something I am currently on the hunt for as my recent visit proved useless to say the least.  I am also have neuropathy (actual burning in my hands and feet) and head to toe inflammation that all started about 6mnths ago that is beyond painful, so I definitely concur that it is most likely all tied together in an underlying health issue. I’ve been tested for all of the obvious, diabetes, connective tissue disease, arthritis ect... and it’s all negative, so I’m looking for a referral to a neurologist hopefully soon.

Thank you all for the incite and information.

 

[Clarissa]

@jtab Yes you should definitely see a neurologist asap.  They have a bunch of tests they can run in the office.  You'll get a diagnosis for sure.  These are all neurological symptoms.  Even a mediocre specialist should be able to help.

Yeah I have a huge bottle of Excedrin on my nightstand.  I keep it closer than my phone because lots of times I wake up with a migraine which is such a pain in the ass.  But that's why I haven't seeked out anymore prescription medication.  The Excedrin does the trick if you catch it early enough.

 

[DoomKitty]

@jtab Ooof, sorry youre dealing with all that.  Really hope you get that referral ASAP and get a really good neurologist.  

 

[jtab]

Thank you all for your incredible incite, compassion, encouragement and intelligence. It is GREATLY appreciated , more than you know.

 

[Handsley]

@jtab.  Yep, migraine mostly likely, but you should check it out if you can.  I get that as well, but not as severe as you describe.  My headaches are always one-sided so it happens on the side I get the headache on.  Terrible headaches happened to me for 3 weeks along with COVID.  It could have been just a coincidence because I tend to get migraines the worst during the fall along with the allergies.  Isn't it funny how Excedrin is the wonder drug for all of us?  Someone I know actually gets the lights and then goes blind temporarily from her migraines.  They are awful and I completely sympathize to whoever has them.  I hope you are feeling better and have some answers soon.

 

[Roxyanne]

Mine are terrible - always made worse by chronic, daily opiate use.   N-acetyl Cysteine and microdoses of psilocybin mushrooms help more than anything.   I take the NAC on an empty stomach in the morning when I feel its going to be a migraine day.  Then when I eat, I take vitamin B2 (riboflavin);    I also get botox all over my forehead and temples (this is CRUCIAL - it will cut the pain in half)  - about $400 of botox every 5 months.  

 

[Joelco92]

Benzos help more than any other drug I’ve tried with migraines. I know they’re extremely addictive so only take them when you really need them but they almost always take away my migraines. RC benzos also work if you can’t find a doctor willing to give you benzos: 

Another option is sumatriptan and you can easily get those from a doctor: only thing is after taking them for a few years they started making me sick and anxious. It’s worth a shot  for yourr migraines it’s probably the best option for you. Soma is also another option but they don’t work well as benzos, but they are much cheaper if ordered internationally.

 

[Joelco92]

Anyone from Canada ever done business with a compounding phamacy and I pretty sure it is over towards the Western Coast? They used to be known for compounding aldosterone for the adrenal glands

 

[mistabenzo]

Man when my migraine starts it feels like something is squeezing my brain stem and I have a constant pressure in my head daily

 

[Kendra black]

as a migraine sufferer for 25 years I have tried all the meds. I recommend Fiorinal either with or without codeine. combination of barbiturate, aspirin, and caffeine. the one with codeine is controlled. the one without codeine is not in most states. slight potential for abuse in my opinion, but works well. Also, sumatriptan is great but I have had a doctor tell me it is not to be used more than once or twice a month. I have it, and only take it as a last resort if over the counter meds don't work. good luck. usual protocol is referral to neurologist, MRI for the brain/ head, then they try you on various medications. worth the investment to get control of migraines. they really ruin your day and while you are suffering from one it is agonizing. YMMV

 

[TommyAC]

@ClarissaThank you.  All of this great information is really helpful and easing.  I had no idea what the hell it was, and it freaked me the hell out! I was pretty sure that my wife thought I was crazy while I was describing it, and I even questioned myself a bit lol .  Migraines are definitely no fun!  They are so so so painful.  I too have to be in pitch dark with ice or a cold can or something similar put to my head or the nausea comes.  I have found excedrin to be a game changer. I invested in the huge $30 bottle, but it was definitely well worth it.

@DoomKitty a knowledgeable dr is something I am currently on the hunt for as my recent visit proved useless to say the least.  I am also have neuropathy (actual burning in my hands and feet) and head to toe inflammation that all started about 6mnths ago that is beyond painful, so I definitely concur that it is most likely all tied together in an underlying health issue. I’ve been tested for all of the obvious, diabetes, connective tissue disease, arthritis ect... and it’s all negative, so I’m looking for a referral to a neurologist hopefully soon.

Thank you all for the incite and information.

Did you get some results in the end? If you have both migraines with aura and neuropathic pain, there are several medications to prevent both. Topiramate, valproic acid, tricyclic antidepressants, calcium blockers, it all depends on what works for you.  My mom has had severe migraines her entire life, she took a version of fioricet for a while, then various meds until I convinced her to try eletriptan to abort migrains as they are starting and it worked really well for her, so triptans are a good option, just not one for daily use. I've heard great things about Reyvow, not a tripran but works pretty much the same way. And finally there are four injectable medications, galcanezumab, fremanezumab, eptinezumab, and erenumab. They are all antibodies that target the  Calcitonin Gene-Related Peptide, which to simplify causes the inflamation that causes migraines. They are subcutaneus and are used once a month, except for Eptinezumab, which is administered through IV every 3 months. That's as far as my research got, the eletriptan worked really well for my mom but according to everything I read, they're pretty great meds, effective, but they can be pricey depending on insurance and what not. If you have any doubts just contact me, I've read so much on this topic and it's in my head and it doesn't have a purpose aaaaAAAAAAA

Cheers!