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migraine stigma

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#1 monchichi_mommy

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Posted 10 August 2013 - 01:28 PM

    Hello all, I am in the process of being diagnosed right now and its not been an easy experience. I am 99% sure that my problems are being caused by N. I will be wide awake one minute and struggling to stay awake the next. I fall directly into REM sleep, when I'm not having insomnia. Also I get HH which are terrifying most times. I originally went to the doctor for migraines and after 3 months of trying to figure out the cause I think this is it. So I trekked back to the doctor and very, very nervously asked to be tested. To my surprise she agreed right away, however when I got home I noticed she hadn't ordered the correct test, she had ordered a test for sleep apnea. I called back and we argued back and forth for awhile so I called the sleep clinic who called her and got the correct test ordered. She also sent me to an ENT to look for any obstructions that might be causing apnea, nothing was there. So at this point I am pretty angry with my doctor.

 

     At first I was excited to get this figured out and maybe hopefully get a little better but a few days ago it hit me that this is going to change a lot of things. Its going to change where I can live (I need to be able to drive!), it's going to change how people look at me, and now I'm going to have all sorts of stigmas. Im really afraid of the first time someone suggests my parenting is affected by this. I know most of my family will be supportive but then there are the family members who don't know when a joke has gone too far, or the flat out cruel member of the family who will take any chance to put me down (I mostly avoid them anyway but cant avoid them all the time). 

 

     So now, I'm angry with my doctor, worried about my future, and trying to prepare myself for the idiots who will say mean things, but at the same time not get so defensive that I attack innocent comments. Also my husband and I were planning on having another child soon and now I feel like that's off the table. Any help you can give to this whole mess would be greatly appreciated.



#2 sk8aplexy

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Posted 10 August 2013 - 11:29 PM

As for the parenting side of it, I have no idea what to say.  Although, it's definitely not something people with Narcolepsy can not do...

Regarding the doctor/s side of it, you seem to be on top of it, in getting the proper test/s ordered, and set.  It is standard that they check for apnea, and if an apnea issue appears, it is standard that they cancel the following days MSLT and then try to first 'treat' the apnea matter, prior to setting possibly another MSLT.  That whole process can be a real mess, as for me (with minimal-moderate Idiopathic Central Sleep Apnea, which in my mind in my case may be directly related somehow to having Narcolepsy with Cataplexy) the process was dramatic, and was an over 9 month ordeal. 

There's very unfortunately, still a lot of misunderstanding by too many doctors and also sleep labs/techs, there can be a lot of presumptive judgment/s and attitude/s; so, be ready for such which I'll say again, you sound to be on top (aware) of it and expecting such.

 

It definitely takes some time to adjust, to grasp, and to fine tune whatever treatment/s or adjustment/s you manage to make. 

There definitely are stigmas, you have to choose who you can or want to tell, along with when and, how to tell them; doing so can be surprising in that, with some who you'd expect to be understanding, they may turn out to be completely thrown off not understanding, and of course vice versa occurs too...

There's a lot of juggling, unpredictability and limits of control/s; some seem to pull certain things off better than others, while the others may seem to manage things better than some...

 

You are, at the least, in a good place for reading and learning, venting and being.

Learning about the condition, the disorder, the disease is hugely beneficial and knowing, reflecting, recognizing, tuning into your own self, is also vastly value-able; being aware of your limits and boundaries seems to be very important when living with Narcolepsy (with or without Cataplexy).

I hope that you find a comfortable path and also find whatever confirmations that you need.  As well as, some benefits in whichever manner and/or ways, that do work for you.



#3 monchichi_mommy

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Posted 11 August 2013 - 02:01 PM

are there people who get on medication and what not that actually works?! it seems like everyone is saying they are still struggling with meds years later and cant drive or hold a job?!



#4 WVgirl

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Posted 11 August 2013 - 10:20 PM

I'm in the process of being diagnosed as well. It's been over two weeks since I had my sleep test and I am anxiously awaiting the results. 

 

When I say "anxiously awaiting", I don't mean I'm excited about having N or not having it. I'm anxious because if I do have N, then a lot of frustrating things in my life will be answered- hopefully- and I can be on my way to being treated and starting to deal with the diagnosis. I'm nervous if I don't have N, I'll be back at the drawing board. I know that something is wrong with my body. I'm 21 years old and have been suffering with excessive sleepiness, vivid dreaming, and depression because of my sleepiness since I was a teenager. There are times during the day I couldn't stay awake if I tried. If I don't have N, then I honestly don't know what I'm going to do. My symptoms are affecting my performance in my internships, my job, my school work, and my relationships. 

 

I totally understand that possibly having N is making you worry about your future. I am too. I'm about to start my senior year of undergrad and feel like I'm not ready to face anything because of my health. I'm angry, sad, frustrated and embarrassed about my conditions on a daily basis.

 

I wanted to tell you all this to let you know you are not alone. I found this network and my eyes were opened as to how many people are dealing with the same things I am. Try not to be scared. Stand your ground. If you are sure you have N, then keep getting professional opinions. I plan on doing the same. 

 

Let me know how everything goes! 



#5 Ferret

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Posted 11 August 2013 - 11:50 PM

Yes, there are people on here who drive, have jobs and have found medication or lifestyle changes that work for them. I drive just not after 1 p.m. which works out OK for me since I'm up at six. After giving up my job as a Lab Tech at age 35, I operated my own business for nine years...that gave me flexible hours. After that I did volunteer work for nine years...again with flexible hours.
You will find out what works for you personally but don't expect a magic pill that will put everything back to "normal". It will take effort on your part to care for yourself and your needs. In doing that, you will be able to care for your family.
Gotta go...time for bed.

#6 Ferret

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Posted 12 August 2013 - 01:40 PM

OK Monchichi, here's my two cents. I suffered with a permanent headache for three years (before N). I finally discovered that it was caused by MSG. Are you using any packaged foods like the delightful, flavourful and easy Uncle Ben's rices? Any Campbell soups (other than tomato)? All of these ordinary packaged foods that we take for granted are loaded with MSG (and its various other names). No MSG = no headache (for me). Processed foods like lunch meats or bacon = chemicals = headache (for me). Anything that has a chemical in it = a headache (for me)...and there are a ton of foods with chemicals in them...even probably all fast foods. Food dyes are another source. I am a chronic label reader complete with magnifying glass.

You may want to start keeping a food and beverage diary that also has a column for how you feel...reactions may take place as late as 12 hours after the consumed offender.

If I accidentally consume MSG now, I will have a terrible nights sleep...tossing, turning and wild dreams...and a  headache.

Not consuming that kind of stuff helps with my sleep...I still have Narcolepsy with Cataplexy.

Other people have sensitivities to glucose, gluten or dairy...yours to find out if you do. 

Find out what sleep schedule works for you. For me, it's nighttime from 11 p.m. to 6 a.m. and an afternoon nap from 2 p.m. to 5 p.m. (my bad last night).

I did all of the above and managed a life for 25 years after a disaster with Ritalin and Imipramine (Tofranil) in 1986.

I started Provigil two months ago (100 mg. at 8 a.m. every day) and it has made me downright perky.

I also smoke cigs and mainline Diet coke. (that is NOT a suggestion  but merely a statement).

You WILL find what works for you. Chin up!

There is no stigma unless you let it be one. On the other hand, you'll find out whether you have friends or acquaintances.



#7 monchichi_mommy

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Posted 18 August 2013 - 12:39 AM

Msg isn't causing my headaches though I'm sure it isn't helping anything. I went on a 100% raw veggie and fruit diet for two weeks to see if that helped (I went into it slowly cutting things gradually so as not to go through carb withdrawlsr or anything) and there was 0 change I am eating healthier I'm on weight watchers and I'm exercising a lot trying to make myself as healthy as I can manage. I know me and if I try to go vegitarian, or vegan, or no carb or anything too drastic I will do great for a day then fall flat on my face. I guess its just kind of a scary process for me like wvgirl said it would explain so much and if that's not it I'm back to the drawing board with no ideas. I feel like I'm damned if I do and damned if I don't. Also the medicines freak me out I have had a lot of random reactions to medicines in the past from normal things like hives, to severe depression and paranoia and suicidal thoughts. I have a great support system so I guess now its just a waiting game. Sleep study is september 1-2 worrying won't change anything so I guess I will cross all these bridges when I get there.

#8 monchichi_mommy

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Posted 18 August 2013 - 12:43 AM

And yes my family watches me very closely when I'm on new medicines. They put me on antidepressants for my migraines my mom called twice a day for two weeks to check on me and still asks once a day and my husband asks me at least twice a day and tries to talk to me about news stories or things that normally get me talking to see if my answers are skewed from what they generally would be

#9 squirrel!

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Posted 18 August 2013 - 08:16 AM

Hi!
I just wanted to tell you we have very similar stories. I am a stay at home mom of two and also in the process of being diagnosed. I also get migraines no actually they are what started me on the road to being diagnosed. I couldn't take ANY migraine preventative mess, they made me so sleepy was not functional. Finally we realized my severe sleepiness wasn't due o the migraines and being a mom. I have another sleep study tomorrow, hoping it shows something!!

Please keep me posted on how you are doing!

#10 monchichi_mommy

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Posted 31 August 2013 - 01:07 AM

Hello all. I have my sleep test Sunday and as if I wasn't nervous enough this week has held a few new things for me. I had my first bout of sleep paralysis and it was absolutely terrifying. I was stuck for probably 20 minutes, hallucinating, could only move my eyelids and that took intense concentration, and there was a very loud buzzing in my head. The next night my husband stayed up in the hopes of somehow helping if it happened again. When I went to bed the dog was snoring like he does every night so like every night I told him to roll over a few times. The second time my husband asked what I thought the dog was doing that was so loud and I said "he's snoring!" thinking DUH do you not hear that the dog is snoring louder than a freight train?! turns out Dog was not snoring at all so now I have to question how often I lay there shushing him and poking him for something he isn't doing. I feel like I cant trust my own mind and its terrifying, who do you trust when you don't even know if what you are seeing and hearing is reality?



#11 Hank

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Posted 31 August 2013 - 09:11 AM

What a mind game I don't believe anything my brain tells me when my eyes are closed.

 

One night I woke up because I heard our smoke alarms going off full volume- then it stopped. I woke up my wife who was sleeping through the whole thing. Turns out the alarm never went off.

 

At least the dog is safe to poke and push. Take it all with a grain of salt and try to get a laugh if you can.



#12 monchichi_mommy

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Posted 11 September 2013 - 12:32 PM

OK I am upset. Very, very, upset. I got my sleep results back today and was told nothing is wrong with me except stress. Doc prescribed me Xanax or a week and said if that doesn't help she will send me to a sleep specialist. Left and looked over the paperwork only to find she had sent the wrong information in AGAIN even after we had talked about this. She sent the request saying the indications for the study were snoring and EDS. I DO NOT SNORE!!! I have never snored except maybe once or twice when I had a really bad cold. She didn't include the fact that i'm having HH or sleep paralysis or that I fall directly into REM. The MSLT was inconclusive because even though I fell asleep during 3/4 tests I didn't reach REM well I was freezing. Their AC was broken in my room and it was unbelievably cold I had 8 blankets and was still cold! How are they supposed to get a good idea of my sleep patterns if Im sleeping in conditions ideal for a polar bear?! So I just called the doctor that evaluated the sleep study to tell him the things that were left off and he isn't in today he will be in tomorrow but his assistant will be out so I wont get a call back until Monday. here are my test results tell me what you think

 

 

sleep efficiency - 89.4 (greater than average)

latency to sleep onset 19 minutes

latency to REM onset 49.5 min (average being 90-120)

wake time after sleep onset 34.7 min

number of stage shifts 103

number of awakenings 30

 

 

 

Sleep stages     time (minutes)     %of test          normal

Stage 1              22.5                      5                     5

Stage 2              346.5                    76.2                50

Stage 3              26                         5.7                  15-20

REM                  59.5                      13.1                 20-25

 

Longest period of wake after sleep onset 7 minutes (the oximeter was cutting of finger circulation)

 

Arousals

leg movement 0

spontaneous EEG arousals 468 (HOLY CRAP!!!)

 

Respiration

Central apnea 0

Obstructive apnea 0

mixed apnea 0

hypopneas 9 lasting 20 seconds each 1.2 per hour

Respiratory Effort related arousals 49 lasting 12.8 seconds each 6.5 per hour

 

The apnea events all occurred in the 75 minutes I slept on my side

 

Total limb movements 0

 

During the study pulse ranged from 58 bpm - 115 bpm

 

MSLT

Only 1 of my naps was allowed to go the minimum 20 minutes

 

nap 1

nap duration 16.2 minutes

Total Sleep time 13.5 minutes

Latency to sleep onset 1 minute

No REM

 

Nap 2

Nap duration 19.6 minutes

total sleep time 13.3 minutes

latency to sleep onset 4.4

No REM

 

Nap 3

Nap duration 20.1 minutes

No sleep

 

Nap 4

Nap duration 23.7 minutes

Total sleep time 7 minutes

latency to sleep onset 8.4 minutes

No REM

 
 

 

 

 

 

 

 

 

 



#13 IdiopathicHypersomniac

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Posted 11 September 2013 - 02:02 PM

You have UARS and very poor sleep quality.



#14 monchichi_mommy

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Posted 11 September 2013 - 02:50 PM

Looked up UARS and I don't think so it wouldn't explain the HH and sleep paralysis and what I read said it happens in the supine position not in the lateral position like I was. Also my blood oxygen levels were 100 - 95% all night. The neurologist is now looking over the results with the proper notes about my actual symptoms so we will se what she says. Yes I am aware my sleep quality is poor I guess I should have listed that as a symptom



#15 IdiopathicHypersomniac

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Posted 11 September 2013 - 03:49 PM

HH when you fall asleep or when you wake up?  You did have a lot of RERAs though, so it looks like you have more than one problem.  That's a lot of spontaneous arousals -- that alone would make you very sleepy the next day, plus your stage 3 is quite low.  It's possible to have HH and SP without narcolepsy, but it's rare.  It could be that you're narcoleptic, but still in the development stage.  It takes years for the REM to show up on an MSLT.



#16 monchichi_mommy

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Posted 11 September 2013 - 06:53 PM

I was also pretty stressed during the naps. Usually when I nap I'm straight into a dream even if I'm only asleep for a few seconds. I have an appointment with the neuro friday and she actually listens so we will see what she thinks. And in the meantime I have xanex

#17 monchichi_mommy

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Posted 15 October 2013 - 11:13 PM

Ok saw a sleep specialist today and got diagnosed as narcoleptic. she said the reason I didn't have rem in my mslt was because of the antidepressants for my headaches. So now my options are to let them call it hypersomnelence and try to treat me with a few meds or get off the antidepressants and take a new sleep study. We are going to try Adderall (anyone with experience on this?) im going to do this while my doctor takes me off the antidepressants and if things don't improve take the sleep study again so they can try one of the vigils. On the right track!



#18 wannasleep

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Posted 17 October 2013 - 12:55 AM

Hi, I am new here and I wanted to ask a question if it is ok. I have not been diagnosed but after reading some of the experiences I think I may have Narcolepsy. I have been having something weird happening and I don't know if it is cataplexy or not. It usually happens when I am having one of my sudden sleepy spells but I have had it a few times when I am just a little sleepy. All of a sudden my shoulders, arms and neck feel very weak. Then my head will drop forward or backward and then my eyesight will start jumping. After that my eyelids will start fluttering and I cannot control it. This usually only goes on for 2 to 5 minutes. Does this sound like it could be cataplexy?

Thanks for any help you can give me.

#19 monchichi_mommy

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Posted 18 October 2013 - 12:15 AM

Honestly I couldn't say I don't have cataplexy but I sometimes do what I call the "nod and jerk" eyes close I fall asleep for a very very brief part of a second, my head droops and I jerk awake. I cant really control it unless I stand up and walk around which i'm usually too tired to do at that point. If that is what is happening to you I would say its just part of the sleep attack, if not, I would keep asking around, someone here will have your answer



#20 wannasleep

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Posted 18 October 2013 - 10:57 PM

Thank you for your reply. I get those little nod jerks too. It is so strange how you can suddenly be sooooo sleepy and then you nod off for only a few seconds or minutes and then you feel so much better. As soon as I can I will get in and get it checked out. The eye fluttering thing I get when my upper body gets so week feels different then the little sleep attacks though. I don't know how to explain it. Hopefully I will get answers soon.

Thanks again for your help.





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