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Desperate for help!
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marie1999 posted:
Two years ago I was diagnosed with Complex Migraines and just a few months ago Fibromyalgia Variant. My Neurologist seems to have given up and has referred me to a pain clinic which I cannot get into until the middle of July. I have been on so many meds over the last two years and none have helped. Just the other day I had some more blood work done to check for anything auto immune and some X-rays of my left knee and hip because the pain in them makes it so hard to walk.
I haven't gotten the results of those tests yet, hopefully tomorrow.
Now I am having new symptoms, I have this terrible burning sensation in the left side of the back of my head and my entire upper back. I also keep feeling like something is wrong.
I have had a major increase in stress recently and don't know if that has anything to do with it or not but as usual when I develop new symptoms it terrifies me and then I have yet another thing to be stressed about.

If anyone has any idea what could be going on I would greatly appreciate it.
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jenlewi responded:
If you're not getting the care you need, seek another doctor. If you don't know where to find one, check your local hospital to see who they have on staff for the specialty you need. If you are frightened by new symptoms and can't get in to YOUR doctor right away, go to the ER and let them make an appointment for you with a doctor who will see you in a timely fashion. You are entitled to as many opinions as it takes until you believe you are being treated correctly by a doctor you trust.
 
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itmatsb responded:
Marie,
That's good advice from Jen, but definately keep your appointment with the pain clinic. That is your best bet, and it often takes a long time to get in to them. For me it took 4 months. Now the great neurologist that I got to see at the pain clinic, now has a one year wait list.

The pain clinic has special expertise with pain that you're not likely to find anywhere else. Wish you the best and keep me posted.

Sara
 
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carpetcrawler5 responded:
I agree, because at least some of your headaches could be caused by back pain issues.
 
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marie1999 replied to carpetcrawler5's response:
Thanks. I have since gotten the test results which were all negative. I still have my appointment with the pain clinic and really hope they will be able to do something. My Dr has also referred me to the Fibro clinic. I'm trying not to give up hope. I have had a second opinion and without any of my test results except for the MRI results he gave me the same diagnosis as my neurologist. They want to try a new medication called Savella. The problem is that I seem to get all the weird side affects from medication so they are not sure if they want to take that route since it is such a new med.
These things are frustrating because half the time I feel like everyone including the docs think I'm crazy and now I fear my 19 yr old son is going to be doomed to the same fate as me. He has been having headaches for about 1 1/2 yrs now and just recently he has been experiencing some of the same things I do like the jumbled thoughts. I took him to see my Dr who I think, thinks we are both crazy. He told us they don't sound like typical Migraines. I wanted to ask him what part of mine are typical especially since they have diagnosed me with A typical Complex Migraines with prolonged aura.
I also have a 10 yr old who has headaches as well. I have asked if migraines can be hereditary and never did get a clear answer.
I hope to find a way to manage mine so that they will have some hope.
Does anyone know if they can be hereditary?

I really do appreciate the feedback.
 
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jenlewi replied to marie1999's response:
Many things can be hereditary, but I don't think migraines are among them. If you are all suffering similar symptoms and your doctors can't find the cause in the office, you should consider the possibiliy that it might be an environmental issue, or perhaps a diet issue. I would consider the fact that two of your children are exibiting symptoms similar to yours reason enough to have your home tested for toxins. How long have you lived in your home? What kind of plumbing, carpet, paint, woodwork, etc. is there? Can your doctor or local health department suggest someone to test your home for toxins?
 
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marie1999 replied to jenlewi's response:
I did consider environmental and diet issues and discussed them with my doctor. He seems to think it is all just coincidence. He said that even though some toxins do cause headaches they also have flu like symptoms which none of us have. As for diet my older son and I have completely different diets so I have no idea what is going on. I only rent my home so we are looking into moving although I'm not so sure it will make a difference but I'm willing to try.
 
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jenlewi replied to marie1999's response:
If you're renting a home that's older, you should be able to get it tested for toxins by the local housing authority, free of charge, if your landlord is unwilling to do it for you. At the very least, you should check the carbon monoxide level in your house. Are the headaches worse when the furnace is on and the house is closed up for the winter? Has there been recent construction done nearby? There are literally thousands of potential environmental issues, with a variety of symptoms, so it's well worth checking into. If it is environmental, it should clear up quickly on its own if you move.
 
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itmatsb replied to jenlewi's response:
To Jenlewi and Marie,

Unless Marie, you move to another house that has mold. Any house with flooding in the basement in the past can have mold. When I was growing up in elementary school I had constant headaches while we lived in an old house that had had flooding in the basement. As soon as we moved, the headaches went away. And again, when I was in my late 20s I lived in a new house that had had flooding in the basement and again, after a period of time, I developed headaches. Both times, the doctors thought it was from the house. That was pretty amazing considering the first time it was in the early 1960s. What an intelligent doctor. No one else in the households had the headaches, but I was especially allergic to mold from testing.

And I had no flu like symptoms either time. So much for what your doctor thinks.

Sara
 
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jenlewi replied to itmatsb's response:
Thank you for pointing that out. I was thinking of the building materials that were so diferent in the past, but mold is non-discriminatory regarding the age of the house. I remember becoming deathly ill when my parents replaced the carpet for the first time in our house. The material the old carpet pad had been made from had been reduced to dust from age, and it made me so sick that the decision was made to tear out ALL of the old carpet and get rid of any trace of the old padding while I was out of the house. It was a good deal more of a project than they'd planned, considering the two rooms the project was intended to include, but it led to the happy discovery that the house had beautiful old hardwood floors someone had covered with carpet! They still replaced most of the carpet, rather than refinishing all of the floors, but left a few rooms without carpets.

I couldn't go near the root cellar in my grandmother's house, for whatever reason. I doubt it was mold, though, as she kept everything so ridiculously spotless in a steel mill town! I know women of her generation took great pride in their homes, but the work involved in keeping everything dusted every single day is mind-boggling to me, and cleaning a crystal chandelier every day is completely beyond my comprehension.

I suppose allergy testing might also be helpful to determine if there's an environmental cause for migraines, since some things that are allergens aren't technically toxins.
 
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itmatsb replied to jenlewi's response:
Yes, our grandmothers and before them did work incredibly hard without the modern conveniences, e.g the washing machine.

As you allude to, dust can also lead to strong allergy reactions as well.

It's great that your parents were so understanding and did everything possible to take care of you.

Sara
 
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carpetcrawler5 replied to jenlewi's response:
Yes migraines can be hereditary.
 
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mymygraine replied to marie1999's response:
Hi Marie - I am coming to this discussion a little later, but I do know how frustrating all this is, and most primary docs and neurologist know little if anything about migraines. Here you will have to be your own best advocate and do some reading and searching on the web to get the correct information.

First, migraines are heriditary. Not sometimes, or part of the time, always. That has been shown scientifically. That does not mean every one of your children will have migraines, but it is passed on from parent to child. The majority of migraine sufferers are women, not men, and they are varying types of migraines, with and without aura, and many others as well. Some go away on their own, some continue on in different forms.
If you are having problems getting your doctor to give you proper support, find yourself a migraine specialist. This will be a neurologist that specializes in migraines and migraines only, and all neurologists are not migraines. Look for the Migraine Headache Assoc. on the web, and go to their site. They will have a list of specialists, and you can find one nearest you and call for an app't. You will probably have to wait, so talk to the PA and find out what to bring with you, and they will most likely send you a packet of information, including a diary they want you to keep until your appointment.
Go to Amazon and look at the books about migraines. There are many - some written by Drs., and some written by patients. Read as many of them as you can so you are informed. Also look for support groups where you live, to get some support for what you are going through. None of it is easy, and every person's migraine is different which makes it more frustrating.
Good luck, and keep us posted.
 
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itmatsb responded:
mymigraine is right that a headache specialist is also a very good bet to help you. But they also can be very difficult to find and around here, the wait list is about a year. And you usually need a referral for them to accept seeing you. But give it a try as well as your appt. at the pain clinic.

As far as your concerns about your doctor thinking you are crazy--if the doctor DID think that, then they wouldn't be referring you to a pain clinic and to a fibro doctor. It sounds like your doctor is taking you very seriously. And if you don't think that you're crazy, no one else will either. So be assertive with anyone that you meet about your limitations and suffering. I tell people that I am disabled by my migraines. And yes, I also suffer from fibromyalgia plus a whole lot of other diseases commonly found in people with fibromyalgia. So be sure to take yourself and your symptoms very seriously.

Once you find the right doctors, they will be able to help you far more with their specialties. If your migraines are chronic and intense, you will probably need at least several treatments. As you will see if you look at a lot of the other postings, many people suffer for many years with migraines and fibromyalgia. But the doctors should be able to mitigate your symptoms some.

Good luck.

Sara


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