At the end of my rope, looking for support :(

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At the end of my rope, looking for support :(

Post  alk8980 on Tue Feb 19, 2013 11:46 am

I am 32 year old female, I have had migraines and constant head pain since I was 15. I used to be able to know when a bad migraine was coming and was able to get to a safe place to black out, but over the last few years things have gotten so bad and so unpredictable that I am afraid to go to far from home without someone with me. I don't know when they are coming, I have no warning symptoms. I have different and new symptoms everyday that consist of blurry vision, auras, severe ear pain, muscle pain, numbness, obviously head pain, speech problems, memory problems, cant concentrate, severe pressure in my head, chest pain, back pain and recently sometimes clear liquid drains from my nose when I bend over. I am extremely tired of hurting. Nobody around me understands, to them its JUST a headache. I am very depressed, have lost my job, and just don't function the way I used to. I have been to doctors and neurologists, physically they don't see anything wrong inside my head so they pretty much just push me out the door and forget about me. I have been on so many different meds that either make it worse or do nothing at all. Currently I am only taking cymbalta for the depression. I am sitting here, reaching out because I know that you all can understand the pain and frustration that I am going through. I really truely am at the end of my rope. I don't want to hurt anymore, I don't want my daughter to continue seeing me in this kind of pain, I don''t want to be a burden to those that are around me. I am really not sure that I can continue especially if things continue to get worse. I have recently made an appointment with an ENT, which the appointment seems to be an eternity away, and even with that have no hopes that he, along with all the other doctors I have seen, will be able to ease my pain. I am reaching out for some tiny little bit of hope that anyone might be able to bring me. Desperate for comfort!!

alk8980

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Re: At the end of my rope, looking for support :(

Post  Migrainegirl on Tue Feb 19, 2013 1:04 pm

Alk,

We do indeed understand the frustration. Hang in there. You may find some good ideas here.

It sounds like you need a good doctor or nuerologist who understands chronic migraines. Unfortunately many give up when they don't have an immediate cure. Not sure what the ENT will be able to do, but you never know I guess.

Have you tried any of the supplements or hormonal routes? I've had pretty good luck with that so far.
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Re: At the end of my rope, looking for support :(

Post  RMcClure99 on Tue Feb 19, 2013 4:49 pm

you are not alone I am going through much the same thing tried a million prescriptions and shots and nothing and the doctors all seem to think I am making it up for attention or something.... I hope you find your answer soon!

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Re: At the end of my rope, looking for support :(

Post  Jewishmother on Tue Feb 19, 2013 4:52 pm

I am so sorry for your pain and all that you are going through! Is there someone that you can vent to who will listen not only with their head but also with their heart and give you the hugs and support that you need? These websites have been vital to my keeping my sanity but I also know that it is important to have someone in front of you who can hold your hand and look you in the eye and tell you that some days we only make it through hour by hour, minute by minute.......but we do manage to make it through.

I do understand how frightening and frustrating to have such a wide range of symptoms that it is hard to leave the house alone. My symptoms are very stroke-like and I never know when they are going to hit so I certainly understand your anxiety. Do you have symptoms every day? It sounds like your brain is in overdrive and the migraine cycle needs to be broken. Do you know what your triggers are? You say that you have a daughter - you are not a burden to her or the other people in your life that care for you.........we who struggle everyday with migraines need to remember that even though we spend so much time and energy dealing with this disease that we still matter and make a difference in this world. Please remember that!

You are in Indiana? I am also in Indiana.......what part? If you would like you can private message me and I can give you a rundown of good neuros/bad neuros that I have encountered at least in west-central Indiana. Also our weather has been so erratic - do you think that has been a factor this winter? Please stay in touch and post often and let us know how you are doing! I am sorry if this post is a little rambling......have migraine coming on so having trouble forming my thoughts. Leslie
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At the end of my rope, looking for support :

Post  Cindy*W on Wed Feb 20, 2013 8:53 pm

I really feel your pain.

Unfortunately about the only thing you can do is search out a doctor who is interested in trying to find a solution for you and will give you what you need to control your pain so that you can live some kind of meaningful life.

I just lost my wonderful MD after 15 years so I am kinda in the same boat you are right now.

One thing I have noticed is that the younger docs coming up seem to be of the opinion that pain meds are not a good thing for chronic pain and don't like to prescribe them.

You know how that goes in the medical community.

Over the years, opinions change.

It's more likely that an older doc still believes in erring on the side of caution and treating pain when they need to.

Anyway that's the way it seems to me.

Don't give up.

Just keep looking til you find the Doctor that is the best fit for you and your situation.

You are worth the effort.

Please keep us informed on how you are doing.

Cindy
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Re: At the end of my rope, looking for support :(

Post  dcook60 on Fri Feb 22, 2013 6:21 pm

not sure if anyone has thought of this, but "clear liquid drains from my nose" could be a spinal fluid leak! the ENT may be able to check this out but i really don't know. as far as i'm aware, it's a diagnosis that most doctors wouldn't even consider.

a neurologist might possibly be a better choice, as an emergency appointment. i know neuros have been unhelpful in the past, but perhaps with this new symptom, one would be more apt to take you seriously? hoping for the best for you, and sending you comfort and hope, dianne
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Re: At the end of my rope, looking for support :(

Post  sailingmuffin on Sat Feb 23, 2013 3:57 pm

Hi,

I am so sorry you are having such a rough time. But you are in the right place.

I have had chronic intractable migraines since age 17, now 32. I also have a fainting disorder which causes me to faint anywhere between 5-20 times a day. Though it has gotten a lot better since I got Dora, my service dog who can alert to the fainting and also alerts to the migraines.

I completely get the isolation thing. Do you have any friends/family who can go places with you? I'd hate for you to black out alone. Also, we are here anytime.

I agree with the others- get to a neuro fast. If they can't help, see if they know someone who can. It may also be time to think about managing the pain with pain medications. Remember, you have to live with this as well. Please get all this checked out. Also ask the ENT if he knows of anyone else he knows can help you.

Pain free days,
sailingm
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Re: At the end of my rope, looking for support :(

Post  alk8980 on Sat Feb 23, 2013 4:43 pm

Thank you all for your posts! For years I have felt like I was some sort of freak that was crazy and was the only one having these problems now I am definately sure I am not alone. I am still in a horrible cycle that has been going for almost 3 weeks now. I so desperately, as I am sure all of you do, want to be able to go somewhere and enjoy it. I don't have any friends to turn to and I have been with my boyfriend for 3 years and at this point, he gets very pissy sometimes about me not feeling well. I am usually alone with my dog Haley, who stays by my side almost all the time. When I am alone and black out, I find her laying next to me when I wake up. I am currently in search of a headache/migraine specialist in northwest indiana and am also considering looking for a new GP, being that I was in ER and they couldn't get me into see him for a follow up for 2 weeks! Ridiculous!

alk8980

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Support

Post  doximom on Wed Feb 27, 2013 7:54 am

I don't have any answers here but want to reach out to you and let you know that I, too, understand what you're going through. The disappointment, etc. When my children were younger it was worse for me, because I was not reliable for them. I would say something like, I'll pick you up from school later, and then later I would have to ask a friend to go get them because I was incapacitated. Now they're teenagers and one of them drives, so it's a little easier.

Thank God for our dogs, right? My sweet dog also stays by my side when I am in pain, especially if it's bad enough to send me to bed. There are times, though, that she barks and wants to play and I'm like, ugh, please stop! But what comfort Smile

I would say keep looking for a good doctor who will not give up on you like the others. Is there a headache specialist near you? I'm sure you've already searched that... you may also want to try the naturopathic route (look for a naturopathic doctor, or "integrative medicine") because they tend to go beyond what the mainstream doctors do.

Good luck. Virtual hugs to you Smile

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Re: At the end of my rope, looking for support :(

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