Friday, July 13, 2012 Destination asks

Q: Desperate to stop this Migraine

I REALLY hope someone can help me. I have had this last migraine since December. (My migraines have usually wore themselves out in 3-4 months). I take Zofran to stop from throwing up and Zanaflex to relax enough to sleep at night. (I still wake up a lot from the pain).

In January my heart stopped from it. I have taken everything from steroids to Nerve block (shots in the back of the head) to Botox treatments (along with numerous medications) and nothing has broke it. I have been on numerous preventatives that have caused severe medical issues. I have wore out 3 doctors and am seeing many others. So far...no one can help.

My hair is now falling out and I am so fatigued I can barely get to room to room. I was very athletic (ran about 11 miles a day, lifted, practiced yoga...) until all of this, but now I struggle to walk to the next room.

I am so upset that I have to be so sick, fatigued, in pain, losing my hair, and paying out all this money to not get any results. I don't know what else to do. Does anyone have any suggestions?

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Answers (3)

Teri Robert, Health Guide

7/15/12 4:01pm

Hi, Destination,

I'm SO sorry you're going through all of this.

I absolutely agree with Nancy that it's time for you to get to a Migraine specialist.

Truly, I'm very alarmed by what you said about your heart stopping. Having Migraine can increase our risk of heart disease, but I've never heard of a Migraine making anyone's heart stop. What tests were run when that happened? Is there any history of heart issues in your family? What concerns me is that there may have been something else going on at the same time as your Migraine.

The same concern also comes to mind with the fatigue and hair loss you mention. Yes, fatigue can certainly be part of Migraines. Hair loss? Not so much. I'm not a doctor, and I can't give you medical advice, but I have to wonder if your doctors have ruled out other health issues such as thyroid disease that could be causing some of your symptoms. We see this all too often -- comorbid conditions (conditions that we have at the same time, but neither causes the other) overlooked because doctors and patients both just assume that all the symptoms are from the Migraines.

So, I guess I have two suggestions for you - seeing a good Migraine specialists and getting a good overall check-up to be sure nothing else is going on.

Please keep us posted on how you're doing?

Teri

Destination

7/23/12 9:38am

Thank you both for replying! It hasn't stopped yet. They did all kinds of tests when I was in the ER and more after. I have had several versions of MRIs and CAT Scans. I had the ekg. But I think I want them to run an eeg. I heard that I could possibly be having an ongoing seizure hidden as a migraine.

My insurance will not let me see a migraine specialist and I can't pay for it all out of pocket. They keep saying a neurologist is the same thing. They just don't understand. I think they believe this is a simple headache.

Some doctors think I may be losing hair due to the extreme stress from having pain, fatigue, and sickness all the time. I have two dogs and have a good chance of losing one. My stress has sky rocketed since Friday and I have been crying almost non-stop. That made the migraine worse.

I will keep you both updated. I go to two different hospitals July 30 and July 31. So hopefully they will have some answers.

Nancy Harris Bonk

7/23/12 4:41pm

Oh, what a horrible cycle you are in, I feel for you really I do. I'm not sure why your insurance "won't" let you see a Migraine specialist, but we have some good information in an article about patients being consumers that might be helpful for you; Patients as Consumers - Managing Healthcare and the Healthcare System

Does that help?

Nancy

Destination

7/24/12 8:49am

It does help, thank you! I am changing insurance companies in January. For now, my doctors are doing everything they can. I have wore out 3 doctors, but they are wonderful with trying to find other people that can help that my insurance will cover. I have 2 well known hospitals I am seeing this month, so I am hoping they can help.

I am on some vitamins and special shampoo to grow back my hair. It could be just stress making me lose my hair. My aunt had lost her hair when she had extreme stress so it makes sense to me. I am keeping up my faith. I by no means feel like killing myself, but sometimes I lose hope that God plans on me feeling better. Then I snap out of it and realize I am just feeling sorry for myself.

I have always had migraines and could always deal with them, but this one has lasted more than the 3-4 months I am use to. But it does help "meeting" people that suffer too. I am so sick and tired of hearing.."oh I get them too. Just take a couple of Tylenol and go to bed. You will wake up feeling great!" Really? THAT is not a migraine. THAT is a tension headache. LOL! Silly people! :)

Nancy Harris Bonk

7/24/12 10:32am

Glad my information was helpful. Yes, I love that reply too - as if by taking a few Tylenol would help stop the pain we ALL would do it! That would be too easy!

Keep me posted,

Nancy

Destination

7/24/12 4:52pm

Will do! The neurologist today gave me some new medication. I will pick it up tonight. I will let you know if it stops this migraine. I am also being sent out for physical therapy. It's worth a try! I just want to break this thing and get some energy back! I have a house and my bedroom is upstairs. Whenever I go upstairs I have to take a break half way up before I can continue on. I want so desperately to never have to do that again!

Nancy Harris Bonk

7/24/12 5:16pm

Thanks for filling me in. Acutally PT may not be a bad idea at all. Lots of Migraineurs have issues with neck pain and that may be part of a posture issue. Worth a try!

Nancy

Destination

7/24/12 6:34pm

Awesome! Makes me feel better. :) My first appointment is Thursday. I will keep you updated.

Destination

7/25/12 9:53am

Hi everyone!

I just started some new meds last night. I will give you the names of them tonight. One of them is supposed to make me fat. :(

I am so fatigued that I can't work out, so I have naturally put weight on already. If this is supposed to make me fat (and if it works) what should I do to keep the weight down. I can't work out. Will a diet of mainly fresh fruits and veggies do it? That is what I do now, but I am already gaining because all I do when I get home is lay on the couch and watch televison, because I don't have the energy to hold up my head or anything. I struggle at work, but I want to work. The fatigue is horrible.

Thank you in advance!!

Nancy Harris Bonk

7/25/12 10:16am

What medication is supposed to make you "fat?" A potential side effect of some medications may be changes in appetite or weight, but let's keep our fingers crossed that you won't have that particular one!

As far as a "diet" goes, that really isn't my area of expertise, but I try to eat a lot of veggies, protein, fruit and stay away from as many carbs as I can!!

Hang in there!

Destination

7/25/12 11:04am

Thank you! I was bad and don't remember what it is called. I will look at the bottle tonight and list it here. Thank you again!

Nancy Harris Bonk

7/14/12 7:11pm

Hi Destination,

I'm so sorry you are not feeling well. Being sick for an extended period of time really stinks. I think the most important thing now is to break the current cycle of pain you are in.

Unfortunately, there can be times when a Migraine just doesn't respond to the medications we have, and it goes on and on. If your regular medications haven't stopped this Migraine by now, it's time to call your doctor for help. Sometimes, a steroid taper such as a Medrol DosePack will break the Migraine. Sometimes, the best treatment for intractable Migraines that aren't responding to medications is IV infusion therapy to get the cycle broken. For more information, see IV Treatment of Refractory Migraine.

Another step may be to see the expert in head pain, a Migraine specialists. You probably don't want to see anymore doctors, but it may be worth it to end this pain. You might want to think about it like this -when a pipe under your kitchen sinks breaks you call a plumber. He is the expert who fixes plumbing. You could call a handyman who can fix your broken pipe, and then fix lots of other things in your house. But a handyman fixes so many things he isn't an expert in plumbing. A neurologist treats so many different conditions, like MS, stroke, epilepsy and more, it is difficult for them to be experts in one area. A Migraine specialist is an expert who treats one disorder - ours - Migraines and headache disorders. When you get a chance, take a look at article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

Hang in there, and keep us posted,

Nancy

Destination

7/23/12 9:40am

They have done everything but run the IV with steriods. I will ask them about that. My insurance will not help me pay for a migraine specialist and I can't afford all of it out of pocket.

I will keep you updated! Thank you!

chrissygal

7/25/12 2:38pm

I have been living with chronic headaches and migraines since I was nine, 36 now. I so understand what you are going through. I also had to experience my hair falling out. It lasted for about four years. Very thin hair and falling out just by washing it. I soon started to really think about what was in my body and how I was reacting to things in my life. I new that stress was my number one cause to this.

I started eating really clean, I mean whole foods, alot of greens, fruits and cutting back on fast food and junk food. I also started taking Biotin, 5,000mg a day.

It took a while, since hair grows slow but within a year I started to see a difference. New baby hairs coming in and more of it. Plus I was loosing weight and feeling better. Even though this new lifestyle had little effect on my MONSTER, aka migraine disease, I did see many positive effects from it.

Hang in their.

Destination

7/25/12 3:54pm

Thank you! I am so glad I am not the only one losing hair!!

I will have to take Biotin. I am taking Hairomega DHT twice a day and using a biotin shampoo that my doctor had me get. My hair is falling out just like you described.

I am definitely trying to eat clean, but there are areas that I can still clean up in my diet. I will keep working on that. Thank you!

Destination

7/25/12 5:59pm

I am on the generic of pamelore (it is called nortriptyline). I think this is a preventative. It is supposed to make me get fat. The doctor also put me on Relpax. The Relpax is suppossed to make the migraine stop. So far it has not. *sigh*

Destination

7/26/12 8:39am

I am so sick today. Is there anything that I can do besides take my zofran. I can't take that at work because I get sleepy. Thanks in advance!

chrissygal

7/26/12 9:53am

In times like this you want to pamper your body like crazy. A lot of water, eating clean and fresh and focusing on letting your pain go. Breath and do some streches. Relax the mind with the body.

Hang in their! :)

Destination

7/26/12 9:54am

Thank you Chrissy! Will do!

chrissygal

7/26/12 10:02am

Plus give prayer a try. Talking to one that created you is a never fail to getting some relief.

I live on talking to my father.

Destination

7/26/12 10:56am

You're right. I believe in the Father. I know I am supposed to be learning something through all of this. God never lets bad things happen to us unless He can use it for good. At least that is what I believe.

Destination

7/26/12 3:41pm

I am feeling better. Thank you!

I have been trying to clean up my diet. One thing I am going to do is try to make my diet at least 50% raw fruits and veggies. I will tweak it from there, but this is how I am starting out. :)

Destination

7/26/12 8:08pm

Started physical therapy today. It was okay. They scheduled me for everyday. I think they are just after the money. I am going to call the doctor in the morning and ask how often he wants me to go.

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