Any insight is appreciated

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Any insight is appreciated

Post  Benji1976 on Tue Jul 24, 2012 8:26 pm

It's been several months since my last post (shortly after a car totalling accident attributed to the mmigraine meds I was taking). I resigned from my Director of Sales position last week due to my ailments. I could just really use some help from the forum on where next to turn, if anybody has any suggestions.

While my neuro continues to be persistant that I'm suffering from migraines or some type of chronic daily headache, I'm still skeptical of the diagnosis. I've started taking detailed notes and here are my symptoms (typically 15 to 20 days out of the month):

Stinging/burning eyes
fatigue
muscle spasms (particularly around my eyes)
scratchy throat (occasionally)
head pain

The head pain is the worst. Sure, I get headaches but more than that it feels like I've been kicked in the head several times. Tender spots around my head that feel like bruises. They can be gone nearly as soon as they show up though which would be unlike a bruise.

Treatments so far:
Extensive blood tests (both through an Immunologist and Infectious Disease Specialist)
Prescriptions from my Neuro including Lyrica, Topamax, Zonegran, Depakote ER, and various triptans
Tons of antibiotics last year
Tonsillectomy
Accupuncture
Head massage

After my car accident in late April I started the accupuncture and Depakote ER (500 mg), and felt pretty damn good for the entire month of May. I really thought I had made a break through and then it started back in June.

This all began in December 2011 (20 months ago), and I just don't know where else to turn. I feel almost ready to give up on life. I'm 35, I've had a good life and I have great memories of happier times. I'm not giving up just yet, but I'm getting closer to that point and refuse to live a long life filled with pain management, lack of personal success, and being a drag on those that I care about.

If anybody has any ideas on a productive next step, I would appreciate any insight. I've thought about maybe going somewhere like Duke or Emory- maybe a place where a team of doctors could evaluate my symptoms. The bias among specialists (completely different diagnosis depending on the type of doctor that I see) has been costly so far and unproductive.

Thanks for any help.

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Re: Any insight is appreciated

Post  Jewishmother on Tue Jul 24, 2012 11:15 pm

I am so sorry that you struggling........please though it is worth it to keep putting one foot in front of the other. I do understand that it is difficult to face endless days of pain and frustration - you said that you do have people in your life that you care about - have you talked to them about how you are feeling? I also feel like a burden sometimes to the people I love but they don't feel that way.......I have to keep reminding myself that even with my migraines I can still figure out a way to live my life - maybe not the life I had planned but still one where I can make a difference in other people's lives.

It is a good idea to maybe go somewhere like Mayo or Duke and get a thorough work up. I assume you have had an MRI along with your blood work. Is your neuro a migraine specialist? You might want to also consider keeping a food diary. Do you notice anything that triggers your symptoms - food, activity, weather etc... I also have scalp tenderness and if I have someone massage pretty intensely it can release the pain. Think I am rambling now so will sign off but please stay in touch. L
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Re: Any insight is appreciated

Post  greent on Wed Jul 25, 2012 12:11 am

Sorry to hear about your pain, I can relate. I'm curious- why did they send you to an infectious disease doctor? Were you traveling before this all began?

I've thought of going to a research hospital also, but have yet to do so. I was considering flying out to one of the Mayo Clinics at one point, but that's a costly endeavor too. Just an idea- Emory or Duke might have a functional/integrated medicine department. Hope things get better for you.

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Re: Any insight is appreciated

Post  Migrainegirl on Wed Jul 25, 2012 1:52 pm

Unfortunately your story sounds much too familiar. Many of us started getting chronic headaches following an accident or injury of some sort. As my doctor explained it, an inflammatory situation is set up in which your body learns to have migraines. This is more likely if there is any family history of migraines. Unfortunately it seems to be really hard to get it to quit. And like you, many of us have found no relief and weird side effects from the various meds they try.

Some options to consider:
-chiropractic
-vitamin supplements (magnesium, vitamin D, butterbur)
- anti inflammatories
-Botox

Mainly it is important to keep trying things and don't give up. Eventually you will find something to at least lesson the frequency and severity of them so you can get your life back.

In the meantime, you may want to consider work you can do from home in order to stay working at a more flexible level you can maintain.

Good luck!
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Re: Any insight is appreciated

Post  nicoleb on Wed Jul 25, 2012 2:26 pm

I am so sorry for all of the pain- emotional and physical- you are going through. You are at a place where people understand, and will take you seriously. Please, please, understand that there is a reason you are still here- even if you aren't aware of it right now.

A Immunologist and Infectious Disease Specialist would have been needed because the symptoms that you listed could caused by a number of different illnesses. Sometimes doctors would prefer to look for something specifically wrong, rather than saying "it's just migraines"; as that is kind seen as a cop out in the medical world.
I am sure that the information that they gathered still has use, if for nothing else, to prove that it isn't x,y and z.

One thing that I would suggest is a "whole body" approach. It is not just your head that is being affected- it is just where you are feeling the pain. It is possible with all of the antibiotics, prescriptions, and the tonsilectomy you may need a body cleanse of some sort. This will take out the build up of toxins that could be causing your migraines.

Also, there is a post by ZomigMan, back in June, that listed all of the foods/additives that some one who is prone to migraines may be sensitive too. Watch for MSG's and all of the names that they hide under.

Lastly, not only is pain depressing, but it is also stressful. Find a coping mechanism for your stress. Whether golf, yoga, meditation, or some creative activity- find something that will help you push the stress out of your mind. (this is part of the "whole body" approach. Yoga and martial arts talk about this as the mind-body connection)

I hope the best for you, and please keep us posted on your progress!
Much Kindess,
Nicoleb What a Face

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Re: Any insight is appreciated

Post  dcook60 on Wed Jul 25, 2012 6:40 pm

benji, my heart hurts for you. it is certainly a crummy place to be in; where you have your documentation of symptoms and no doctor yet consulted has a clue.....

going to a highly respected clinic WITH AN INTEREST IN HEAD PAIN might be just the ticket. this is hearsay, since i have not personally been to one of the "biggies", but mayo seems a bust for most head pain folks.

do your research before you choose a clinic. ask for feedback here. keep on looking; there is an answer somewhere. if not the "cure" we all hope for, then at least some way to be functional. alternative or conventional; doesn't matter as long as something helps.

i know you've already explored lyme disease or other strange and poorly-understood critter-borne diagnoses. there's also plain old "chronic fatigue syndrome", which is a bonafide disorder, but another nebulous thing, except for the person who suffers with it.

the scratchy throat in your list of symptoms made me think of that. i don't know how CFS can be ruled out, though. to my knowledge, there is no virus yet pinned down as the cause, but maybe there is new info since i last read about this.

i do not have this; i'm tired because i haven't slept properly for 25 years, but i don't have the crushing fatigue others have, nor the throat stuff. i have another lovely thing; fibromyalgia, which many doctors don't even believe in. my fibro and migraines appeared after an unknown month-long severe illness long ago, which was likely lyme, but nobody will ever know for sure.

CFS is something you could consider checking out, if you haven't done so thus far. keep on reading here for ideas. we care about each and every person who posts.

dianne (this forum is the main reason i'm as functional as i am, working 30 hours/week at my advanced age. i've been reading and posting for over 14 years.)

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Re: Any insight is appreciated

Post  Benji1976 on Wed Jul 25, 2012 8:27 pm


greent- yes, I was travelling in SE Asia when this all started. It was actually dcook that prompted me into action on the infectious disease testing. My primary care physician referred me to an Infectious Disease Specialist, but warned me that they had never accepted a patient he recommended. My sales profession has taught me to be persistent, and I got in and had a battery of tests- all negative. I had three Infectious Disease Specialists tell me that while its possible I could have something that's unknown to them, unlikely based on the timeline of my symptoms progressing.

nicoleb- I did the cleanse, plus lots of exercise. It didn't help my symptoms, but I did drop 25 lb.s and in better shape than my early 20s.

Migrainegirl- chiropractic and botox are on my short list of things I haven't tried. From the limited amount I can find online concerning the tender spots on my head, seems like it could be something known as epicrania fascia- botox is the recommended treatment.

Dcook- Your advice is always helpful and inspiring. I do think a clinic is an appropriate next step. If anybody has any suggestions on good ones to research, please share.

To the other posters, thank you very much for your thoughts and insights.
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