I feel so lost. Silent migraine diagnoses

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mikelean
New Member


Date Joined Apr 2007
Total Posts : 10
   Posted 5/16/2007 8:32 AM (GMT -6)   
I have been tested for everything else. And finally the Dr told me it might be silent migraines. I waited till I had the symptoms of a big one then took an imitrex like I was told and the symptoms wen away. Although the pill made me feel weird.
So I went back to the Dr. He told me must be a a typical migraine. Here is a prescription for the pills and if you take them often we will put you on a preventative. Handed me a 1 page pamphlet on migraines and said see you in 2 weeks if needed.
I feel so bloody lost. I have been searching for 18 months to figure out what was wrong with me. And now that I " know " I feel just as lost. my symptoms can be so debilitating. I havent been myself in over 1 year..
I am left on my own to figure out what is AURA what is this migraine that doesn't hurt or what is prodrome. When do I take the pills? When I start to get the Aura.....I can do that but is the dizzyiness aura or am I having a migraine o did I have one yesterday and now I am exhausted. Sometimes my symptoms go on for weeks in weird cycles. Am I having prolonged aura.....migraines....or after effects.
Pretty sure I had a migraine on Sunday. dizzyness,left arm pain,slurred speech, confusion and a stiff painfull neck. But since then I have been dizzy ,confused ,tired so so tired and depressed. Ok so Is this the end of one or the beggining of the next.
And I read that imitrex is not good for silent migraines. I don't want the pain dear god I really don't but how the heck am I suppose to figure this out. Pop 9 pills a week and hope for the best. I feel mentally worse now then when they thought I had MS or I was dying. People around me say good now you know what it is .just take your pills and you will be ok. And they are right after such a long search I have gotten off lightly. Why do I feel so down. Last 2 days I have been flying off the handle and crying at the drop of a hat.......depressed? postdrom? predrome? how about PMS? I don't even know what I am doing anymore.
Sorry for the ran. I just hoped someone here might hear me and understand.

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 5/16/2007 10:48 AM (GMT -6)   
Hi Mikelean,

Rant away, that's what we are here for. What I think is not fair is that your Doctor has not explained what is going on, if indeed he knows!!!!

You need to get yourself to a Neurologist who is a Headache Specialist as soon as you can!!!! A Headache Specialist understands 'Migraine' in a way no other Doctor does, and should be able to explain what is happening to you!

Sometimes when we finally get the answers we are looking for it is overwhelming, but in your case I fear you got an answer of sorts, but were left with many more questions unanswered so no wonder you feel a little down!! Hang in there, and if you are not happy with the imitrex go back and talk to your Doctor about something else!!

Let us know how you get on, take care

Ann
Co-Moderator of the Migraine/Headache Forum


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 5/16/2007 11:13 PM (GMT -6)   
Hey Mikelean,
 
OK, here's a short (HA-HA!! tongue ) review of the basics....
 
There are two basic types of migraines.  A "Classic" migraine comes with the "AURA", which are usually visual disturbances which are a warning that a migraine is beginning.  When you notice the aura symptoms, that is the time to take medication, known as an "Abortive" drug (like Imitrex).  This should stop the migraine attack in its tracks.  If one medication doesn't work, there are a wide variety of meds that can be tried. 
 
A "Common" migraine is the same painful headache, but doesn't provide you the "Aura" early warning system. 
 
The "prodrome" is the set of symptoms you feel prior to the excruciating pain setting in.  I personally have common migraines, the biggest "trigger" I have is a change in weather, either barometric pressure or temperature.  A good way to figure out your own triggers is to keep a diary of all food and beverages you consume, and what your environmental factors are present.  You keep this diary going until you start to see the patterns of foods or other similar situations that always end in a migraine coming on.
 
Other than food and environmental triggers, hormones (or PMS), loud noises, bright lights, even eye strain can be triggers.
 
I would suggest seeing a Neurologist as soon as possible.  It doesn't sound like the doctor you have been seeing is knowlegable enough about migraines to treat you correctly.  I've had migraines for 34yrs, since I was 8, so I've pretty much learned all the ins and outs of migraines.  In all that time, I've never heard of a "silent" migraine, so I have no idea where you got that term.  Also, your doctor should not have just prescribed the Imitrex for you.  The first time you try it, it should be given via injection in a doctor's presence, because the side effects can be dangerous.  Personally, I would rather have the migraine than to take Imitrex, which gives me horrible side effects.  Plus, it doesn't do anything for my migraine.
 
The critical issue here is that you don't take more medication for your migraine attack than prescribed, or more often than prescribed.  You should not take pain medication, prescribed or Over-the-Counter (OTC), more than two days a week.  If you don't observe this limitation, you can (and probably will) get yourself into a cycle of "Rebound" headaches.  Rebound headaches are horrible and once you are in the cycle, you must force yourself not to take any pain medication at all until your system clears out.
 
If you are getting migraine attacks frequently, like once a week, you should get a "Preventative" medication prescribed for you.  There are several different kinds of preventatives, so it may take some time to find what works for you. 
 
You should also have an "Emergency" pain medication to take if your abortive medication doesn't work.  Some people have to get a pain injection from their doctor or from the local Emergency Room.
 
Most migraine sufferers find the right combination of medications over time.  The faster you get started with a Neurologist, the better off you are going to be.
 
Lastly, I totally get the depression end of getting migraines and not knowing the answers.  I am still fighting the frequency of my migraines, and am actually on SS Disability, partially because of my migraines leaving me unable to hold any employment.  I have other medical problems too, so the depression actually has to be medicated too.
 
Anyway, I hope I gave you some good information, at least a decent overview of migraines, and I hope I answered some of your questions.  Let us know how you are doing.
 
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


mikelean
New Member


Date Joined Apr 2007
Total Posts : 10
   Posted 5/17/2007 5:24 AM (GMT -6)   
Thank you very much that did clear alot up. I have ben doing reseach on the internet and there are alot of people out there with silent migraines....or painless,apheligic( spelt wong) they have lots of different names.. I was givn a 50 mg dose of Imitrex and told I can take it 2 times a day. He didn't want to put me on a daily preventative unless he had to. I will go se him in a few weeks and I want to get a referal to a neurologist. Thanks again for the info.

Mikelean

snugglesrn
Regular Member


Date Joined May 2007
Total Posts : 40
   Posted 5/22/2007 6:37 AM (GMT -6)   
Mikelean,
I am new to this forum and I just want to say thanks! I no longer feel like I am alone. I went to a neurologist and was diagnosed with either silent migraines or seizures. They are not sure yet. I am in the process of going to a new neurologist since I didn't feel comfortable with the old one. It has been a frustrating process. I had a CAT, MRI and MRA done and found that nothing was wrong (which was a relief) The new neurologist will be sending me for an EEG and blood work.
I have always had migraines but I have just started with the Auras and really bad attatcks. My first attatck I thought I was having a stroke!
I feel alone because my husband doesn't understand. He actually told me that I am being lazy and that I need to work through the pain! This is from a guy who when is sick is a big baby! He has never had migraines before so he don't understand what it is like at all.
Right now I am on no preventatives or pain killers. I am waiting for my appointment for the new neurologist on June 15th. It has been such a painfull and long wait for this appointment!
Sorry to vent so much!
snugglesrn

Barely Existing
New Member


Date Joined Sep 2012
Total Posts : 3
   Posted 10/2/2012 4:49 PM (GMT -6)   
Mikelean,
Reading your post was like seeing the feelings and thoughts that I've had about myself finally written in words. I too suffer from migraines. I am currently fighting what I believe is a silent migraine for almost a month. I'm confused because I too am not sure if what I feel is a predome or prodome. I would love for someone to explain to me why immitrex is bad to take during a silent migraine? Also, I thought it might be informational to know that in the past I have been given a prescription for prednisone (10 MG pack) to take for a week, slowly lowering my dose as the week goes on. This has helped in the past to stop the pattern my migraine (silent) is in.
Currently, I am waiting to hear from my doctor. I have seen an endocrinologist, neurologist and my family doctor. I have been in urgent care as well. No one seems to know what is going on with me, and they all send me to a different doctor. I have been in bed for over a week because I do not have the energy to do anything else. This is very frustrating. I don't know where to look for an answer. I am assuming my symptoms are a silent migraine. (Generalized weakness, tremor, facial twitch when talking or use of facial muscles, ear pain, slight headache in forehead area, slurred speech, painful teeth & jaw, cold hands & feet, foggy thinking, trouble with coming up with words, joints that pop & crack often, arthritic like pain in joints, and serious exhaustion.
Any insight would be appreciated. Best of luck to all fighting chronic pain. This forum is a wonderful way to feel understood. I feel so alone and misunderstood, until I read posts here.

sunshine0126
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/13/2013 6:43 AM (GMT -6)   
I'm so glad to finally see people with problems like mine. I've been dealing with this for years. I've really been tracking it since 2007 and until recently dr's kept telling me it was panic attacks , but I knew better.  I could feel it coming on. I would get the blurred vision, stiff neck, numb & tingly like a stroke, icy hot on the back of my skull, lots of pressure, but no headache, confusion, sensitivity to light, and then extreme anxiousness due to the numbness and thinking that i'm having a stroke.  I've had blood work, cat scans, sleep study, chiropractor, ekg, eeg, eye dr.. you name it I've done it...and the only thing that even remotely helped was taking about 4 ibuprofen and 2 Tylenol at a time..but my goodness, what am I doing to myself and what is causing this.  I finally found someone that listened and she started me on Topomax, but this is only my 3rd day and it just makes me feel weird all day...and I can't sleep...so now i'm like oh my...but i'm sooooooo thankful that I've found this sight!!!
 

Gooseks
New Member


Date Joined Jun 2013
Total Posts : 1
   Posted 6/17/2013 9:22 AM (GMT -6)   
I am at a loss. I have had similar issues since I turned 38 and now I am 41. I have had EKGs, Nuclear Stress Tests, CT Scans, MRIs, inner ear eval, etcs. All of them came back normal. Most doctors have told me to just deal with it, you are a man it is in your head. The Neuro prescribed Lyrica for a period of time which just added on weight but did not do anything. I have tried topamax as well but the results were marginal. I typically get a pin and needles feeling near my ears and start to feel strange. I see many different lines and shapes at times. In some cases I can see a power cable or phone cord that seems to glow as if I can see the electrical current running through the line. I also feel like my limbs are harder to control during the first few minutes of the issue. There are times that a slight sharp chest pain near the left nipple occurs before or during the aura situation which just creates greater fear of death. In many cases I feel as though I am going to pass out and start having serious anxiety that I need to get out of the situation. However, I always tell myself that I am still here and have not died yet - just keep pushing on. Lack of sleep and certain lights are always triggers to this along with drinking alcohol the night before. I am getting to the point of just wanting it to be over as my ability to play along and act normal is getting tougher by the minute. I really don't know what to do and just can't handle the horrible experiences any more. I am really done with this and wish I could just have my life back. 

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 6/21/2013 11:26 PM (GMT -6)   
I didn't read all the responses here, but I was told by the pharmacist not to take more than 3 Imitrex a week.

I'd definitely check with your pharmacy to check about this. It may be that they're being extra safe given that I'm on medicine for other things, but he told me there was a risk of kidney problems if you take too much.

Good luck. I hope things get better for you.
Becky (aka Monkiray77)

Crohn's, Anxiety & Depression, Migraines, Chronic Lower Back and Right Leg Pain , Pulmonary Emboli (twice) & Pneumonia

Surgeries: 2 Bowel resections, appendix & gallbladder removed, July '11 Adhesions removed to prevent more obstructions

Meds: Humira, Warfarin, Prevacid, Prozac, Verapimil, Pravastatin, Calcium, Vit D3, Vit B12, Lortab, Zanaflex, Clonazepam

aura/anxiety
New Member


Date Joined May 2015
Total Posts : 1
   Posted 5/11/2015 4:07 PM (GMT -6)   
Hello - I am hopeful,yet discouraged to see so many fellow silent migraine sufferers on this site. I too have been recently diagnosed with basilar/acephalgic migraines after visiting a neurologist because I thought I had Dysautonomia. I have had every test possible, I think and everything comes back normal. Still I struggle with the silent migraine diagnosis. I am having a hard time figuring out what is anxiety and panic attacks and what is aura. I am tired all the time and dizzy most of the time. I get these "attacks" that are hard to explain, but it feels like this wave comes over me and I get ringing in my ears, it feels like my heart stops, and I'm going to pass out. This then incites a panic attack. Then I get vertigo and all I want to do is go to bed. Bright lights cause this or being on my computer. Also, loud noises. My neighbor's leaf blower did me in one day. I am frustrated because I can't find a medication to help me. I am currently on 10mg of amitriptyline which helps with pain I get because I also have TMJ. I am so sensitive to side effects of any other medicine I try and anxiety of side effects. It helps to know others are going through this so I don't feel crazy or like I'm dying. Good luck to everyone suffering. I pray we all find answers and cures.

Poulinm
New Member


Date Joined Mar 2016
Total Posts : 1
   Posted 3/6/2016 7:52 PM (GMT -6)   
I am very glad to have found this site, as I've been feeling like I'm losing my mind, as I have been suffering from these "silent" migraines for years now and have never found others who had symptoms like mine. I can have symptoms that will last 2 days or 2 weeks (currently in my 2nd week of my current migraine). I feel disoriented, dizzy, yet rarely have a severe headache. It is more the confusion and detachment from reality that bothers me. I have not found a particular trigger at the moment and find that I've had to "push through" at times when all I really want to do is sleep, as I am so fatigued. I hope others like me find this site so that they don't feel so alone, as this has been very frustrating.
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