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Bostongirl
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New Here Been suffering for one year
« on: Mar 18th, 2006, 9:58pm »
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Hi, my name is Jennifer. I was so happy to find this site but had to mess with it for an hours before being able to sign in!
     This all seems to have started two summers ago. I got a really bad headache and wound up with vertigo. The next 6 weeks were a fight to get to work. I was in pain, my left eye was swelling, I was tired, grumy, confused, couldnt sleep, couldn't wake up in morning, no motivation, etc. In the winter I got a respiratory thing and I drank wine on anti-biotics. I actually fainted. The next two weeks I had a headache and it was bad. My eye swelled and I got really nervous. Had an MRI came back fine. Went to neuro who gave me topomax. I didnt have good insurance than and It was 300. per visit. He said i had migraines but didnt tell me what kind. He did all kinds of bloodwork and nothing was there.
     All I can remember now is that I have been on a low level of function since at least the summer. My eyelid is droopy and I have a bit of swelling most days. I can't sleep at night. I am moody. I can't wake up in the morning. I have pressure either dull or sharp depending on the the instance behind my left eye, like something is back there building up pushing, I also get tender spots on my head, the pain varies as with the sensitivity to outside stimuli. Sometimes I can't answer the phone and usually lie in bed for days on end. I own my own business and have barely been able to keep up even with my employee's. I am the absent owner lately. I feel like no one can understand this. Like I am crazy. I was depressed but I think now that it is from the episodes. They last a day or maybe a week or maybe months. This last round so far is two weeks with a few minor breaks and varying degrees of pain in between. It got really bad last wednesday and I had had almost 3 weeks prior to that without a headache. Swelling stays but is not overly visable to others at times. I was so upset when they came back. It was bad one. The pain, the confusion, I felt out of sorts like I was drunk driving. I went to the Er and had a ct scan and mri fine.
     my social life has suffered due to lack of energy. I am useless when like this and have no motivation most times to even go to work or get out of bed. Sometimes I can force myself up and get to work for a few but I am not my normal self. I have noticed I am really hyper sometimes and others really tired. So tired. This damn eye thing.
     I really didnt get it for a long time. I recently found out that headaches could last this long and have other symptoms. Oh and over the summer I would get my but to work around 2 or 3 work until I had to get out of there and than drink wine. I see now that the headaches were maybe causing me to drink wine. I know now it makes it worse so I am not using that as my self med. The thing that gets me is that I do not wind up on the floor in pain. Course I never get out of bed. Oh and my nose runs or stuffs usually on left side. I do get different degrees of pain. SOmetimes bad others it is more annoying and the other things which come with it as well make it worse. I have a neuro appointment on Monday at 9:30. I am really worried I wont get up for it.  have only left the house 3 times in 10 days. My business has suffered, my relationship, my finances. I have even gained a little weight from lying around. I did start working out with a trainer. I was so happy not to have bad headaches for 3 weeks and was getting up earlier. My sleep pattern is really bad now. I cant sleep sometimes until 7 am even though I get in bed early. My bed has become my home these past weeks. WHat do I do? What should I take for this? This is horrible. I am so afraid. If I had a job where I worked under a boss I would be fired. Sometimes I think my employees should fire me!
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AussieBrian
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Re: New Here Been suffering for one year
« Reply #1 on: Mar 18th, 2006, 10:15pm »
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G'day, Bosty, and sorry that you're suffering but there's always hope on the horizon.
 
Headaches come in many, many forms and a correct diagnosis is imperitive.  We're not doctors here but, as LeLimey says, we're expert patients.  
 
Have you tried the Cluster Quiz over on the left?  It's not perfect but will give a flying start in finding out just what sort of headaches are bothering you and that's important because being treated for the wrong type means another problem is being left out in the cold.
 
Give it a go and let us know how you get on.  We'll help you every inch of the way.
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Bostongirl
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Re: New Here Been suffering for one year
« Reply #2 on: Mar 18th, 2006, 10:24pm »
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I am going to take it now. Did you think my symptoms sounded different? I am not explaining myself very well. It is so confusing because they come go come back and vary. The thing that stays is the eye thing, the nose thing, the pressure, the pain varies. Oh and the exhaustion where I still cant sleep!
I will take it now. Thanks.
Jen
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AussieBrian
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Re: New Here Been suffering for one year
« Reply #3 on: Mar 18th, 2006, 10:29pm »
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Atta girl.  Knowledge is empowerment.  Dunno who said that but information is our first defence against this beast and you're in the right place to get it.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
Sean_C
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Re: New Here Been suffering for one year
« Reply #4 on: Mar 18th, 2006, 11:57pm »
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Welcome to the board Jen, there's a few of us Bostonians here with ya Grin
 
Hope you find some relief soon  Wink
 
Sean........................... Grin
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chewy
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Re: New Here Been suffering for one year
« Reply #5 on: Mar 19th, 2006, 5:06am »
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Do you stay in bed with the pain or do you need to get up?
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Jasmyn
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Re: New Here Been suffering for one year
« Reply #6 on: Mar 20th, 2006, 4:38am »
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Sorry you are suffering like this.  Best to find the correct diagnoses so that you can get the right treatment soon.
 
Like Brian said, knowledge is power.
 
Hang in there.
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Bob_Johnson
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Re: New Here Been suffering for one year
« Reply #7 on: Mar 20th, 2006, 11:56am »
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First, it's critical that you find a doc who specializes in treating difficult headache problems. Too many neurologists do not have the training/experience needed. Surely, in your area, you should have a headache clinic--either free standing or associated with a hospital. Use the Yellow Pages and ask you primary care for guidance.
 
Second, education!
 
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."Wink
 
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
 
 
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Bob Johnson
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