Migraines :(

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Permalink Reply by Beverly L. on February 3, 2012 at 4:36pm

Hi bell884, am Beverly L., and i suffer from chronic migraines... They are soooooooooooooo bad i pass out for maybe 2-3 days . And when i get up , it's like nothing never happened . Haven't been to the doctor about this in awhile ( after going for so long and so many tests , i just stopped going they couldn't find why they were so bad ) . I hope that you feel better and relax with them and most of all DON'T STRESS!!!!!! Bevely L.

 

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Permalink Reply by MsThang928 on February 3, 2012 at 5:07pm

bells884 said:

MsThang928 said: Thanks for all of the advice.  I noticed that everyone is mentioning taking Predisone.  I already take Predisone but am being weened off because I have developed Diabetes from long term Steroid usage.  I can't take any more Predisone and I have Kindney Nephritis so I can't take anti inflammatories.  I'm not sure what kind of drug Tigan is but I know Tramadol doesn't work for me. The other drum amp...., I don't know about either. I am already on Morphine ER and IM for breakthrough pain.  They don't help with the migraines at all.  By the way, I still have the migraine and the Drs dont seem to want to give me anything else.  Please help before I pull the rest of my hair out! :-(

 

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ModeratorPermalink Reply by janice on February 3, 2012 at 6:49pm

you know i did try something that helped that I did not expect at all. I had a killer migraine and it would not go away. well. i had to take a show before i went to the hospital because it had already been a day or two since showering (bc when you have one of those headaches even taking a shower is too hard)

but i got in and as the hot water fell on my head and back I actually started to feel better.

Someone had asked if I had tried heat before and i could not believe that heat  worked. it always hurts more if i go out in hot weather so i just assumed heat would hurt.

but it did make me feel better.

so now if i ever start to get one i try a hot shower and hot compresses.

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Permalink Reply by aboutmygirls on February 3, 2012 at 11:59pm

Janice, yes, I know exactly what you are talking about. And even after the migrane went away...it took several days to feel normal again. I was exhausted and felt like the migrane was going to come right back...like it was just hiding and waiting.

I have "cognitive" issues which started about 2 years ago....which is another reason the neurologist was thinking MS. I have done some crazy things, including getting into the wrong car, forgetting how to get to the dentist office (or home) with my children in the car, and the list goes on and on....so I can joke about lost brain cells with the best of them...LOL!!!!!

My brain flutters are never funny when they are happening...but you just gotta laugh afterwards or you'll lose it :)

janice said:

Man what an awful ordeal...i know that pain and it is like a migraine amplified by a million. i am glad youi found what works...and i have muscle relaxers and extra prednisone too if i need it for migraine. But thank God I haven't had to use it many times, and even when I do I actually get relief. Did you feel like you had lost brain cells when the headache went away after a big battle like that? no joking (which is really hard for me bc the jokes are trying to burst out about my brain cells...brain cell.)

but seriously I felt like there was a trial of dead tissue where the pain had been...I could actually feel the path the pain took during thew migraine rampage. did you notice that?

aboutmygirls said:

Ok, I have had migranes now for several years....but I only experienced them once every year or two and they only lasted 24-48 hours. They were horribly painful and I had light and sound sensitivity with severe vomiting. I was prescribed NASAL Imitrex because of the vomiting and I went to the ER several times and was hospitalized a couple of times because I had dehydrated so badly. That is my "migrane" history....

but then....a couple of weeks ago (before I even knew that I might have Lupus) I ended up with the worst migrane I have ever had. This migrane lasted 3 whole weeks and I wanted to die!!!! I was in the ER twice for migrane cocktails, I was given a headache cocktail by my Neurologist, and I was seen several times by my PCP who gave me injections of tigan and toradol. None of this lasted more than a day or so.

I was told to take benedryl, prednisone, tigan, etc...etc...etc... I was also told that I could no longer take the Imitrex because of the side effects and I couldnt take my fioracet anymore because of the other medications I was on .Finally my PCP gave me a shot of toradol and tigan and sent me home on prednisone and flexeril and a couple days later, it was gone.

I then found out that this was probably a Lupus Migrane. I am not sure how or why it happened and I pray that it never happens again...but I have to think that it was the prednisone and flexeril that helped cause it was gone a couple days after I began that treatment.

 

I am sorry that you are having such pain. I can totally sympathize with you and hope that you can get some relief. I wont be seeing my Rheumatologist until the end of this month....but I guarantee you that it is one of the first things that I will be discussing with him....other than the huge open ulcers I have in my nose!!!!

 

Good luck!!!

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Permalink Reply by aboutmygirls on February 4, 2012 at 12:04am

Janice, my Neurologists office also told me that Benedryl is supposed to work wonderfully for that type of headache. They gave it to me with my cocktail through my iv....but Im not sure how much good the benedryl worked. The nurse at the Neurologists office told me to take Benedryl at home if I needed to...but I think the Flexeril worked better.

 

Just wanted to let you know :)
aboutmygirls said:

Ok, I have had migranes now for several years....but I only experienced them once every year or two and they only lasted 24-48 hours. They were horribly painful and I had light and sound sensitivity with severe vomiting. I was prescribed NASAL Imitrex because of the vomiting and I went to the ER several times and was hospitalized a couple of times because I had dehydrated so badly. That is my "migrane" history....

but then....a couple of weeks ago (before I even knew that I might have Lupus) I ended up with the worst migrane I have ever had. This migrane lasted 3 whole weeks and I wanted to die!!!! I was in the ER twice for migrane cocktails, I was given a headache cocktail by my Neurologist, and I was seen several times by my PCP who gave me injections of tigan and toradol. None of this lasted more than a day or so.

I was told to take benedryl, prednisone, tigan, etc...etc...etc... I was also told that I could no longer take the Imitrex because of the side effects and I couldnt take my fioracet anymore because of the other medications I was on .Finally my PCP gave me a shot of toradol and tigan and sent me home on prednisone and flexeril and a couple days later, it was gone.

I then found out that this was probably a Lupus Migrane. I am not sure how or why it happened and I pray that it never happens again...but I have to think that it was the prednisone and flexeril that helped cause it was gone a couple days after I began that treatment.

 

I am sorry that you are having such pain. I can totally sympathize with you and hope that you can get some relief. I wont be seeing my Rheumatologist until the end of this month....but I guarantee you that it is one of the first things that I will be discussing with him....other than the huge open ulcers I have in my nose!!!!

 

Good luck!!!

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ModeratorPermalink Reply by janice on February 4, 2012 at 1:40am

lol I know about brain cell humor and you're right---we've gotta laugh.

I have had cognitive issues too. For instance, one day I was my daughter's house and when I walked outside to get in my car I didn't recognize my own car. I thought my son in law had some reson to switch my car with another. I didn't know it was mine till I got close enough to see my walker and stuff in the front seat. that made me feel so weird.

one day I put my pants of backward and didn't notice till almost lunch time. And they were zippered pants!! I'd understand it if they were stretch pants but they were zipper pants!

and I have been lost a couple of times while driving and trying to get to my house or my cousins.

so you are not alone

well, i better hit the sack. my tummy still hurts but i took some meds for it and hope it works.

ttyt:)

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Permalink Reply by Goldie on February 7, 2012 at 11:39am

Sometimes The headaches are brought on by bright light, at least in my case. That is Lupus, and it is aggravated with certain meds. I used to have to wear sun glasses in the house or keep the blinds closed.

We had window film put on all the inside windows of our house as it is very bright, and I wear sun glasses outside  even if it is slighty sunny. We will not use any of the new Compact Florescent Lights, as they really caused me problems.

I only get the sharp  pain for a few minutes, although it is very intense. That in turn causes stress, which we all know is a trigger for Flares.

I too am sorry you are having so much pain. Hopefully you will soon get some comfort.

 

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Permalink Reply by Lynn on February 7, 2012 at 9:37pm

I am so sorry you are hurting, I get them so bad they make me sick and the pain goes all the way down my spine. I hope you feel better soon.

 

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Permalink Reply by sunlover1978 on May 16, 2012 at 6:56am

Yes, I have suffered from migraines for years.  They began at the same time I started having a scalp rash.  Neither of these have been connected to my autoimmune issues as of yet, but from what I've been reading lately about Lupus, could be related.  My migraines are with aura, I lose vision and occasionally also speech.  I get numb along parts of my body, usually only on one side.  The aura starts about 20 minutes before the pain.  I also have nausea and vomiting.  The acute migraine lasts about 6 hours that I spend in vomiting and dosing often in the fetal position, somehow that seems to help.  No medications have ever been effective for me except sedation.  For two days after the acute migraine I feel like I've had a party bender and have a wicked hang-over.  I have lingering nausea and difficulty focusing my vision.  My cognitive function is also reduced.  Over the years I have identified several triggers including progesterone fluctuations, light, nitrates, sesame, and wheat.  I wear special glasses to block certain light spectrums, a tint called FL-41.  It helps, though does not completely control the migraines.  The combo of diet and glasses has reduced my migraines more than any prophylactic medication every did.

The migraines are debilitating and there is unfortunately no cure, just learning how to use the 20 minutes of aura wisely to prepare for two days out of commission.  I have 4 little ones and one on the way....no sick days for mom!  When my husband has been deployed I would put all the kiddos in a room armed with snacks and lay in the door way.  I knew they were in a safe place and would be able to know if they left.  Life is hard!

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Permalink Reply by Beverly L. on May 16, 2012 at 11:54am

Hi there sunlover1978, Migraines, migrains, migrains , OH BoY !!! I hate them with a passion.. Mine are not as bad as they use to be , but as though you say 2days , takes away alot,exspecially whe there are kids involved-smile My kids are now grown but i totally relate to you . When i was in my teens and twenties, i could not handle no noise period, the smallest sound when having a migraine would drive my CRAZIE!!! Once i went to the doctors , and of course they thought that my storywas a lite over the top of how it would have my screaming in PAIN , but one day my sister viedo taped my ( without me knowning) , it was so funny when i saw it , man the this i said to people who didn't know i was haing a  migraine ,were a bit rude!! Sorry to those thatthis apply to !!!! i was not in my right state of mindat those moments is what i woul say to them, after i saw it. Moving on the doctors ran sooooooooooooo tests, i thought that i ws a pin cushion-LOL  At first there was nothing that i coul relate to that would trigger them -they just came! Then one nite - i think i was around about 25 /26 , my youngest son fatherin i were moving into our own apartment , my eyesigh went away totally, i thought that i was being punished for something i had no clue of . At that moment (ken) , was so afraid , he called 911, by the time they arrived i had passed out , woke up in the ER and was crying like a little baby , not knowing what had happened and didn't know what was going on , (ken) was trying to help me to clam down but that didn't work - I just wanted to SEE . The doctors came in and right then they took meto me to have a cat scan , well waiutng for the results and the doctor to come back into the room - i wanted to leave and just deal with it at home , but as soon as i stop talking ths doctor came in ,saying" Ms. Mitchell , what do you eat ? ( now at this pnt am like What do i eat ?? what does that have to do with my head an being able to see?, he says you are eating to much salt !!! Salt that is why i can't see ??!!! Yes his says. For years before this happened , if i would have known that i would ave stopped eatting salt !!! LOL   Now at the age of 44 , i can say hat am doing fine havn't had a server migraine in a couple of years , Thank GOD, and also my eyesight did come back in a couple of hours after that situation happened , me and KEN broke up and now we are the best of friends and are raising a 23year old son, whom has our 1st grandson. But back to the story point , try limiting your salt intake this MIGHT help , it worked for me and still to this day i rarely use salt, Ms. Dash has been there for me on everything!!! Hope that this helps and dont give up .... Beverly L.

P.S. sorry so long-SMILE 
 
sunlover1978 said:

Yes, I have suffered from migraines for years.  They began at the same time I started having a scalp rash.  Neither of these have been connected to my autoimmune issues as of yet, but from what I've been reading lately about Lupus, could be related.  My migraines are with aura, I lose vision and occasionally also speech.  I get numb along parts of my body, usually only on one side.  The aura starts about 20 minutes before the pain.  I also have nausea and vomiting.  The acute migraine lasts about 6 hours that I spend in vomiting and dosing often in the fetal position, somehow that seems to help.  No medications have ever been effective for me except sedation.  For two days after the acute migraine I feel like I've had a party bender and have a wicked hang-over.  I have lingering nausea and difficulty focusing my vision.  My cognitive function is also reduced.  Over the years I have identified several triggers including progesterone fluctuations, light, nitrates, sesame, and wheat.  I wear special glasses to block certain light spectrums, a tint called FL-41.  It helps, though does not completely control the migraines.  The combo of diet and glasses has reduced my migraines more than any prophylactic medication every did.

The migraines are debilitating and there is unfortunately no cure, just learning how to use the 20 minutes of aura wisely to prepare for two days out of commission.  I have 4 little ones and one on the way....no sick days for mom!  When my husband has been deployed I would put all the kiddos in a room armed with snacks and lay in the door way.  I knew they were in a safe place and would be able to know if they left.  Life is hard!

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Permalink Reply by worshipgirl on May 16, 2012 at 2:18pm

I have found some relief from caffeine and over the counter migraine relief pills. But when they get really bad, I close my eyes and pray for mercy.

Some people believe that certain foods may be triggers. You might keep a journal to see what potential triggers you may have.

I pray you find what works for you.

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Permalink Reply by Beverly L. on May 20, 2012 at 3:42pm

Hi Worshipgril, yes prayer goes a long way , keep doing what you are doing , (PRAY-Jehvoah,GOD) is the HEARER of all Prayers.

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