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5 months of hell, what is going on with me

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Posted 12/26/2010 7:17 PM (GMT 0)
Hello everyone, first post :)

Hope everyone had a great Christmas,


about five months ago I was at work and had some very odd pains on the right side of my face and neck (after about 15 minutes) it became a reality that I could not work proper and swelling was taking place. My Co-Workers rushed me to the ER in which the performed the following

- EKG
- Blood Tests
- CT Scan

I had two doctors examine me and both concluded that I was in good health, and what may have happened was an Ice-Pick migraine.

For a while after I was o.k, however suddenly I started having other strong symptoms come up including the following

- Dizziness when walking outside / in public (for example at wal-mart when pushing the cart I feel faint and push to one side more)
- Headaches daily
- Strange pressure on the top of my head
- tingling / pin like feelings in both feet and hands, it can go from one foot then to a hand
- sleeping issues (unable to sleep due to constant fear of what was happening to myself)

I tried to deal with the situation for a few months then decided I would get another opinion and made myself to three other hospitals, I have had the following done in the last two months

- Neurological exam done by hospital doctor (testing of motor skills / movement etc)
- Various blood test done (none done for chemical poisoning)
- CT Scan on head again with dye and without dye
- EKG done again
- Examined by my GP
- full eye examination by optometrist (with retinal scans done 8x)
- sinus examination by hospital doctor prescribed basic antibiotics

- The results again concluded that I was in "excellent" shape, the doctors this time sat me down and said they could not find any tumors or other life threatening issues, and the issues could possibly be due to my age and mothers history of chronic migraines. The doctor stated I have Cluster Migraines and stated it could last for weeks / months and at worst years

Now for an update as of the last 4 weeks

The pain has now become very different, migraines are still present almost daily. However they start from what feels like pressure in my neck, if I move the wrong way for example bending down I will feel a horrific pain in my head and need to stand up straight. Once this comes it lasts for the entire day

The dizziness is still present as mentioned before however at times I feel as if I will pass out or possibly throw up

At Christmas dinner I can feel dizzy yet again and at the same time confused and worried.

What is going on with me ? What do I need to do, my life has greatly changed in the last 5 months in the negative. I went from being an active / strong man to a person who has problems finishing a simple work day. I have lost the ability to remember things in the past at times and feel confused and dazed. My wife and family are greatly disturbed at what is happening to me.

I do have a neurologist appointment in early January, but I literally feel as if my body is shutting down on me

please help
Posted 12/26/2010 10:35 PM (GMT 0)
Oh my; I'm sorry to hear this; and i certainly know how you feel..I'm sure many of us do.

You're doing the right thing, getting with a neurologist. I do have cluster migraines and cluster feature migraines; I will get up to 9 headaches a day when it's at its worst. Clusters have very defining attributes, they are normally unilateral, tearing of your eye, nasal congestion, agitation, wanting to bang your head on anything.
An icepick is usually very quick, mine have never been associated with swelling or dizziness.

You've had a lot of tests, but I don't see an MRI/MRA/brain angio and I also don't see an cervical MRI; have any of these been done?

I know that your appointment probably seems like it will never get here, but it will and you're going to the right kind of Dr. Do yourself a favor; write a narrative of absolutely everything that you remember. Include any sensation, visual aberrations; funny smells, earaches. If you've fallen in the last year or so, make sure you let them know. It will help to get those things down on paper and it will help the dr. understand as well. Make sure you go with someone; another set of ears is essential.

If you don't think that this Dr. is the right fit for you, I would strongly suggest going to a major university or someplace like John Hopkins, Cleveland or Mayo.

Let us know how you're doing..
Janice
Posted 12/26/2010 11:00 PM (GMT 0)
I have not had any of the MRI tests done as my gp beat around the bush thinking my symptoms would go away. It was only until I was rushed to the hospital that he feuded months later to see a neurologist

The migrainr I an having now for the last five days is possibly one of the worse. I literally cannot move me neck in any direction without bringing on the sharp pain in my head

I don't know what to do I want to go to the emergency again but for what the most they do is a ct scan if in lucky.

Sorry for the spelling it's really bad now
Posted 12/26/2010 11:36 PM (GMT 0)
I'm sorry; I really wonder if this isn't related to your neck.
If you don't want to go to the ER; try this; a wash cloth, dampened, rolled up and put in the freezer. Lay on the rolled up wash cloth, with the cloth in the curvature of your neck. Dark room, cool, it may help some.
What abortives have they given you? I am appalled that an MRI hasn't been done...call the Neuro tomorrow, talk to a nurse or NP if possible. Tell them what is going on and that you have never had an MRI; can one be ordered by them prior to your visit to facilitate the visit? What can they tell you?..no? but maybe..yes!
If the cool wash cloth doesn't work, yes, go to the ER' tell the ER doc about no MRI..push your point, you are your own advocate.
Worried about you...
Janice
Posted 12/27/2010 12:15 AM (GMT 0)
Another thought..have you ever been to a chiropractor? I've been helped by mine..
Posted 12/27/2010 4:22 AM (GMT 0)
the problem with the neurologist is he is exceptionally busy and a well known person, so I have been told not to be pushy or I may loose my appointment date. to give you an example of how serious he is a 1500 dollar fine is put in place to those late to an appointment and a 3000 dollar fine if you miss the appointment. I rather hold on two more weeks then upset the one person who may possibly be able to diagnose my situation

i was very upset with my GP as he never took the situation serious no matter how I came into his office, at one point he actually told me to stop bugging him and deal with the migraines. It was only due to the hospital er doctor who was nice enough to actually call him and tell him how severe my situation had become, the er told me to have a blood test done to check for poisoning as I work with various chemicals, and my gp laughed and dismissed it.

I will try the cold cloth method asap , right now I am using a hot bottle. As far as medications I only react positive (dont laugh) to advil gel caps, literally nothing else helps. My pain was at a 8 / 10 with my last post. After taking two 200mg gelcaps my pain is at about a 2/10. I was prescribed tylenol 3 / codeine and it did not help in any shape way or form and made me very groggy.

ps .. i am unable to see a chiropractor as per advice from the neurologist secretary and the er room, as my situation is not fully diagnosed they stated I could have a stroke.

cheers
Posted 12/27/2010 2:01 PM (GMT 0)
Hi Alexkid,

I am so sorry to hear about what you have been going through!! Firstly may I politely point out to you that there is no such thing as 'Cluster Migraines'!! A Headache Specialist will confirm that to you! Migraine and Clusterheadache are two very different types of pain and symptoms. If you wish for more detail on this I am only to happy to clarify this with you.

I am very pleased you are seeing a Neurologist, is this particular one a 'Headache Specialist' do you know??? The best way to get a definitive diagnosis and to find a treatment plan for you is to see a Neurologist who is a 'Headache Specialist'.

Now, you may have to travel a good distance to see one, but you will be so glad you did. It took me years and years to be properly diagnosed, and it was finally a Neurologist who is a 'Headache Specialist' that found a way forward for me!!! Yes, I had to travel to see one!!!

Please let me know how you get on!

take care

Ann
Posted 12/27/2010 11:21 PM (GMT 0)
At MHNI, (Dr's Saper and Rozen (when he was my Dr.), call it cluster migraine and also at Cleveland Clinic, but I have seen it called cluster headache; I've also heard it called suicide headache. In any event, the pain is beyond anything else I've ever experienced.

I'm amazed at the neurologists fees!, but who knows what the background is behind that! I hope you find relief soon. Traveling for the best care is just a way of life, you have to get to the best..
Posted 12/28/2010 11:42 AM (GMT 0)
When you go the neuro, ask if you can see a chiropractor. If told no, be a smart alic like me, demand Full Body MRI, copy of results. You may not be able to see a chiropractor, but there is absolutely nothing wrong with having a chiropractor review your personal copy of your MRI. Then if the chiropractor finds your spinal cord out of align, etc, u know anything, go back to your neuro and say in my copy I noticed that "this and this and this didn't seem right to me." If you need to go to the hospital, try a teaching hospital. I only reccommend that because they have the latest technology and training. I have 99% praise for teaching hospitals, with what they do for me because of all my medical problems. The 1% is cuz my oncologist and I like to fight over my best treatment. He wants me on this med, I'm like "no way... last time you had me on it I internally bled." So its just a doc who dont listen bahh
Posted 12/28/2010 10:01 PM (GMT 0)
Thanks for the kind words and information everyone,

Still have my migraine comes and goes (not 24/7) have a lot of dizziness though.

Quick question, at times I am literally going crazy as I have had a span of nearly 2 / 3 months now with migraines occuring at least 3 / 5 days a week, in it's worst form

I would say near 10 days straight.

Do any of you have the same issues where the migraine lingers to long and stays with you ?

I keep telling myself its not a stroke / aneurism / brain tumor as just less then two months ago I had a CT scan with / without dye and blood work.

let me know, I think I may possibly be driving myself nuts
Posted 12/28/2010 10:10 PM (GMT 0)
Rebound migraines do that :)
Posted 12/28/2010 10:25 PM (GMT 0)
I can't tell you how many times, I thought to myself that I must be making this stuff happen, it must be my fault...maybe I'm just a nut case!, but I'm not and doubt that you are too; you probably wouldn't be asking the questions if you were.

When my headaches are at their worst, I can get 9 a day; the last period lasted 8 months. When I have a respite, it often feels like my head is bruised, or I have a hangover, that is not unusual. I also kept telling myself, it cant be xxxx because I would be impaired by a stroke or be dead by now!..seriously!

Hold on though, you're seeing the neuro soon. Always, always, always, get copies of your films (or discs) and copies of the report...always.

hang in there..literally and figuratively!
Janice
Posted 2/7/2011 2:03 PM (GMT 0)
update:

Thought I would post an update in regards to my situation,

As I visited my neurologist he did various checks on me physically, he then kept on asking me to read out items and in general tried to get me talking as much as possible. I explained to him how high of a dosage of advil I was taking and this was a very big concern with him.

He summed it up that I was addicted to advil and it was causing serious rebound headaches and possibly depression / anxiety.

He finished our first meeting with me getting the following

MRI Brain
Mri Neck
Migraine prevention medication (forgot the name)

The first week of no advil was absolute hell (throwing up / horrific headaches). it eventually went away and the headaches started to slowly get better. The actual dizziness and nausea however is getting worse

I had finished both the MRI of the Brain and neck, and the results came back, the brain had no issues, however the neck has a slight bone growth which should not pose any issues.

I am starting to wonder if anxiety is taking over me, as I constant think I am dying checking my heartbeat / wondering why my body does not feel right (this is an hourly basis)

cheers
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