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Not Sure What To Do---i Neep Opinions


Maxine
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Hi,

Last night my husband and I went out to dinner with my brother and his girlfriend. I started out with my usual low grade headache near the lower part of my head near my neck. It feels like a deep bone aches in my skull, and spreads to my who head eventually when it gets bad. Last night it got really bad, and with each step I took it would pound more. I get a little face numbness on the right, and my usual slurring of speech, and difficult word finding. I sound so dopey sometimes, and it's embarrassing. My headache was so bad, and it got worse when I turned my head to the right, sometimes causing intense sharp pain. When we got into the car I put my hard cervical collar on. I got SOME relief, but not complete, as I still felt a pulsating throbbing.

I'm trying to figure out the best explaination of my pain. It starts at the base of my skull, and works up my head like a "V" feeling like my temples are bulging.

I have this vertebral artery bulge, and I worry becuase my neck is so unstable near my cranium. The problem is that I have No left vertebral artery, so if something happens to this-----that's it.............. ;) I've never been one to suffer from consistant headaches, nor do I have a migraine history. My chin feels numb right now, and I'm starting another one of the headaches. They get worse the longer I sit up, or with upper body mechanics. I can hear little click, click, clicking :P -----even with my hard cervical collar on. My fingers are also buzzing, and a low buzzing in my forarms. My feet buzz ooo--- :o There's just all kinds of problems------------------including some crazy lows on BP. Thursday I had a reading of 73/58 standing.

Anyway, I'm trying to figure out what to do because I don't know how long I can wait. I have an appointment with the orthopedic surgeon at the cleveland clinic on Sept. 30th, and the neuromuscular doc at the CC on the 14th. Should I have my PCP call the CC to see if HE can get me in sooner, or should I call myself? I could call my EDS doc also, as he is willing to talk with the docs at the cleveland clinic any time. He knows the gravity of my situation.

Tomorrow I will be going to see my friend at the funeral home who is only 41 years old------------she passed away from complications of EDS that no one would have ever imagined from EDS hypermobile type. You hear stories of aortic ruptures happening to people with other types of EDS, but I would have never guessed it would have happened to one of my dear friends so close to home.

Maxine :0)

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Maxine, you don't have had a history of migraines and I agree that it does not sound like one since they tend to be unilateral. I would let your doctor know. If the pain is that severe and you have slurring, I'd keep track of it. At least keep a log of what and when and how it feels so that you can discuss it with your doctors. Your doc needs to be the one to push for an earlier appointment; remember they can't take care of you if they don't know what is going on.

I have a history of severe migraines, but they are far more classic than what you describe. I am sorry for the loss of your friend: (((((((((((gentle hugs))))))))))))))

Jennifer

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....or even consider going into the ER/urgent care. If nothing else, you will get some peace of mind. Your symptoms sound pretty severe and out of your norm. I know you hate that idea- especially after what happened to your friend- but try to expect the best. Let the personnel there know you are a complicated case and you do have appts. with specialists lined up, BUT these new symptoms seemed so alarming & so out of your norm- that you just want some reassurance that it's nothing serious. Tension, from dealing with your friend's unexpected death, could be triggering this new neurological stuff....but why not be sure? I'm keeping you in my prayers. Let us know what you find out.

Hugs-

Julie

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Thanks for your replies and support--I really appreciate it, and I feel bad I haven't replied to more postings. It takes me so long to reply, so I read more then reply.

Today is a little better, but still struggling. I watched my body mechanics better, but had to wear my hard cervical collar to keep my neck from moving. Sometimes it spasms and moves on it's own. The deep tendons have had some issues, and a lot of pain, and my neck has been pulling on the right----and of course the swelling is still there at the base of my neck on the right near my clavical.

The headache was so bad last night, I almost went to the ER. Here's the thing, my friend went to the ER, and the whole time the very high BPs were probably affecting her aorta, but they didn't care, they just kept telling her it was anxiety. She was very seriously ill.

The ER woudln't take me seriously either-----------------soooooooooo, I'm trying to hang in there until Monday. I'll call my PCPs office and have him call the Cleveland Clinic. I have the ph#s he'll need. If he won't do it, my geneticist should. If they don't call, then I'll call the Cleveland Clinic.

Tomorrow I'm going to the funeral home where my friend is, and I'm praying that my head won't hurt like it did last night. I'm wearing my cervical collar, using ICE, and tylenol. I think my cervical/cranial instability is affecting something in the lower part of my head---------------I hope it's not the vertebral artery.

If I get that same kind of pain again, I'll try the ER my PCP feels is the most likely to take me seriously. ;)

Maxine :0)

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I'm sorry to disagree with some of you but migraines do not just present on one side of the head, although that's how mine do most of the time. My neurologist said you can have them present all over your head as well as in your temples. Because I do not know much about your other health issues going on, I'm just guessing that you may be getting migraines. Have you ever tried migraine meds? Tylenol hasn't ever worked for my migraines since it isn't a drug that works on the blood vessels in your brain. The only way I can get rid of a migraine is to take Imitrex and maybe some naproxen sodium along with it. I also feel dopey when the pain gets bad and I have a difficult time concentrating. I also get the throbbing pulse when it feels like your brain is keeping time with some rock song!

Just an opinion from someone who knows what migraines feel like. I hope and pray you find some relief no matter what is causing this.

Brenda

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I don't have a history of migraines, and the pain is localized near where my cervical/cranial instability is. Migraines are not the issue, it's the vertebral artery that needs to be watched because it's enlarged, and I have EDS. The headaches get worse when I turn my head to the right, or tilt my head back. The headaches get worse with body mechanics. Migraines do not work that way, and they don't get better when you lie down. If I rest my head and body, and avoid gravity it's gets better----UNLESS of course I push too far, then I have to get the ICE, and use tylenol. There's also swelling on my neck near my clavical, and the more that swells the worse my headache.

My local neurologist finally got off the "MIGRAINE" wagon.

Today I went to my friend's funeral--------------she passed away from a ruptured aorta. This was a complication from her EDS. ANY vascular issues must be watched carefully. Her mother told me today to keep fighting to get this information out there in the medical community and anyone else who needs to know.

I called the cleveland clinic to try to have my appointment moved up, but I called too late. It has been a bad day, and I didn't think about calling until about 4:50pm------- :P . I'm calling my PCP tomorrow-------------it just feels broken back there, and it hurts all the way down to the middle of my back where I have a completely desiccated disc. Part of your face, hands, and feet don't get numb from migraines------------nor does your speech slur.

Maxine :0<

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I don't have a history of migraines, and the pain is localized near where my cervical/cranial instability is. Migraines are not the issue, it's the vertebral artery that needs to be watched because it's enlarged, and I have EDS. The headaches get worse when I turn my head to the right, or tilt my head back. The headaches get worse with body mechanics. Migraines do not work that way, and they don't get better when you lie down. If I rest my head and body, and avoid gravity it's gets better----UNLESS of course I push too far, then I have to get the ICE, and use tylenol. There's also swelling on my neck near my clavical, and the more that swells the worse my headache.

My local neurologist finally got off the "MIGRAINE" wagon.

Today I went to my friend's funeral--------------she passed away from a ruptured aorta. This was a complication from her EDS. ANY vascular issues must be watched carefully. Her mother told me today to keep fighting to get this information out there in the medical community and anyone else who needs to know.

I called the cleveland clinic to try to have my appointment moved up, but I called too late. It has been a bad day, and I didn't think about calling until about 4:50pm------- :blink: . I'm calling my PCP tomorrow-------------it just feels broken back there, and it hurts all the way down to the middle of my back where I have a completely desiccated disc. Part of your face, hands, and feet don't get numb from migraines------------nor does your speech slur.

Maxine :0<

Maxine, in some types of migraines all of that happens. Often times these migaineurs are admitted to the hospital thinking they've had a stroke! That being said, I don't think you need to go on the triptan merry-go-round. Imitrex might work for many, but not all migraines and I don't think that trying different triptans is going to get rid of the pain. I have migraines and I KNOW beyond a shadow of a doubt that the headache that I experience daily is NOT a migraine! (despite what the doc says, he can't feel the pain in my head!) Please, get it checked out!

Wishing you relief and healing!

Jennifer

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Thanks Jennifer,

I called the Cleveland Clinic today, and they moved my appointment up to the 9th. I can't help but think that this will be a waste of time also, but I have to do something.

Still feeling bad, and I think I'm getting a virus on top of that. BP is really low at 90/58 sitting, and my heart rate is also low at 60bpm. This is low for me----definately.

Maxine :0)

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Guest tearose

I hope you can hold out till the 9th! I also hope they can help you then if the symptoms are less. Sometimes being seen when at our worst may help.

You don't want to ignore a new problem when it is painful or worrysome. New issues need a look-see.

hang in there,

tearose

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