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01-30-2013, 06:24 PM | #1 | ||
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Hi everyone,
I apologize if there has been a thread about this already. I searched a little but didn't see anything. I was lifting weights 2 years ago and had the onset of the most painful headache I have ever experienced. I've had a kidney stone and it ranked up there with the level of pain. It came on suddenly and stayed for a while but gradually eased up after a few hours. 2 days later I was doing some pushups and my ears started ringing and I felt "funny" in my head. My head felt awful, no pain really, just awful. Then came the dizziness (unsteadiness), hyperacusis, aural fullness, short bursts of extremely loud ringing, metallic taste,and continued tinnitus. After a few months, the symptoms began to subside VERY slowly to the point where I could function without being totally freaked out. As time went by I was able to see that something in my head somewhere was "broken". Whenever I try to lift anything more than 10 lbs. for a minute or so, the symptoms come back and, depending on how heavy or how long, stay for a day or two to a week or two. It's an awful feeling that only gets better when I lie down. I have had multiple MRIs, CT scans, balance tests, blood tests, etc. to no avail. I can't pick up my kids, carry groceries, etc. My life is completely different now and the only good thing to come from it is that God has become the center of my world (and my families). I know that there are many many people out there with similar problems. I feel so badly for everyone that has to live with these types of issues. They are the kind of injuries/problems that don't get enough attention from the medical community. People look at us and think "that guy looks like he's in great shape, what's the matter with him?" Sometimes I think I would rather have lost a limb or something. At least then people know you have a problem that doesn't need a lengthy explanation three times a day. If anyone that reads this has it or know someone that has had a similar experience, would you please email me. I have never met anyone with the same thing as me. I'm sure you can all relate... Thanks for reading this. God is with all of us and will help us through the tough times... |
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03-21-2013, 06:36 PM | #2 | ||
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Hello. I just found this forum today. I saw your post and thought I should reply ASAP. The same thing happened to me. I've never had headaches of any significance. On January 10th, I did a weightlifting class and got on a machine at the gym for about an hour. As soon as I finished, I had the worst headache ever, and it lasted over a month. The only relief I felt was while lying down. Sometimes, I was nauseated and vomitted after sitting or standing. I went to the ER on day 3, and the CT scan, MRI, and lumbar puncture were normal. Some doctors diagnosed me with migraines, others with tension headaches. On January 22nd, I developed double vision. My first neurologist diagnosed that as 6th cranial nerve palsy. He ordered an MRI with contrast. When that was analyzed, the doctors thought I might have meningitis and I was sent to the ER again. Meningitis was ruled out, but the doctors didn't have any more answers for me. On March 4th, I saw a different neurologist, and he immediately suspected a CSF leak. By this time, I had seen some improvement. My headache subsided after I was prescribed some muscle relaxers by a headache doctor, and my double vision was only on the right side. The neurologist told me that my body may be healing itself and said that we should hold off on a blood patch. He said the conservative treatment is lots and lots of bed rest. I had been forced to rest because I couldn't sit or stand. I missed almost a month of work in January/February. At the beginning of this month, I felt very good for about a week or two, but recently I've felt some of the symptoms I had earlier, though not nearly to the degree as before -squeezing pressure in my head and sore neck. I'm hoping that I will keep getting better if I continue to rest and take it easy. Please let me know how you're progressing.
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03-14-2014, 10:40 AM | #3 | ||
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Frankie,
How did things turn out for you? Did you have to get a blood patch? |
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03-27-2014, 08:25 PM | #4 | ||
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Hey I've been searching different threads on this same topic! I had the same thing happen to me bench pressing over 7 years ago and I still have no answers! It was making me and my family think I'm crazy. I'm the healthiest person I know and have tried everything to no avail. I know you posted this over a year ago but if you have a minute I would really like to talk with you. My life has been so turned upside down and switched around over this, I thought I was going to die for the longest time. Changed me completely, every fiber of my being has been tested. I happen to live in upstate ny too. Please email me if you have time to, it would be greatly appreciated! Thank you
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10-19-2014, 08:02 AM | #5 | ||
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I am glad I found this post. Three weeks ago I did a heavy leg day at the Gym. For three days I had a mild headache and felt off but not terrible. Enough that I didn't workout those days and I rarely skip gym days. On day four the headache got extremely bad on the drive to work and by 9:30AM I had to leave and go to the doctor. For a week I was treated for tension headache but everyday I would drive into the office and by the time I arrived my headache was killing me and so nausea I wanted to puke. Going home and lying down always makes it go away. After a week and half of this I was sent to the neurologist and am currently being treated for migraines which hasn't helped. Having always been a fitness buff and being mostly stuck in bed, missing work and family events for weeks and not know what is happening to me has scared the hell out of me.
Just today after researching online I found out about low CSF headaches so I'm pretty confident this is what's going on. I'm going to go back to the neurologist with this information and hopefully get a treatment plan that works. I'd love to hear how each of you are doing. Were you able to resume your normal lifestyle? Does the problem reoccur months or years later? I'll post back in a few weeks with an update on my case. |
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01-26-2015, 03:32 PM | #6 | ||
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I thought I would give an update in case it helps anyone else. I went back to the neurologist and saw his assistant (PA). I brought up a CSF leak and her response was “no way”. She walked over and grabbed my neck and said: “see how tense your neck is, I’ll give you a prescription for muscle relaxers”. Even after explaining that stiff neck is a symptom of a CSF leak she completely disregarded it. At the checkout I let them know how disappointed I was that I was flat out rejected without even a discussion. The administrative staff there were top notch and got me another appointment with the original doctor in a week and half. That was very good as most have to wait months for an appointment. I was pretty worried and feeling very low at that point. I was worried it could take months or years to get a diagnoses.
In the meantime I decided to go back to my primary physician and explain the situation. He knows me and knows I wouldn’t make something like this up. I was very careful not to say I had a CSF leak even though I was pretty sure that’s what it was. I said I suspected it could be a CSF leak and it was my top candidate and I would like to have a test done to confirm or deny. After explaining all my symptoms he admitted he didn’t know much about CSF leaks so I asked if he would research it and see if he thought it was a possible candidate. He did and agreed my symptoms did seem in line with a CSF leak and it should be a candidate. I asked him to fax a letter over to my neurologist saying he suspected a CSF leak. At this point I felt my neurologist would at least have to have a discussion with me about it. At that appointment we did have that conversion and went over my symptoms and why I thought a leak was the top candidate. It really came down to it being positional. He ultimately referred me to Duke Neuroradiology. The team there is great and they have extensive knowledge and experience with CSF leaks. I got my appointment at Duke about three weeks later and first we did a lumber puncture and my pressure was 10.5 which is low. A CT myelogram confirmed it was leak. Just having the diagnoses was a huge relief. This first blood patch did not take so I went back for a second X-ray myelogram to find the exact location of the leak. I’ve since had 3 more blood/glue patches, I’m recovering from the 4th procedure. The leak is in the front of the spine making it hard to patch and hard to get at in general. The next step will be surgery at Cedars Sinai in CA. Good luck to each of you and I wish you a speedy recovery. I’ll post back when more progress is made. |
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03-18-2015, 05:44 PM | #7 | ||
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Hi...I had a car accident Christmas Eve...having very similar symptoms...contact me if you want, I will tell you what specialists are saying. I could use your input as well. Has been a very tough couple of months. Thank you.
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03-19-2015, 01:19 PM | #8 | ||
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Junior Member
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The blood patch I had on 1/20 was successfully. I didn't get a full seal of the leak and still have symptoms but much less than before. I have been able to resume working and life. Headaches are mostly gone. I do get neck stiffness later in the day. Ringing in the ears but I can deal with that. I do think the symptoms are getting better and I plan to see how things are in another month or so.
*admin edit* Last edited by Chemar; 03-19-2015 at 07:39 PM. Reason: NT guidelines re other forums/groups |
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02-20-2018, 11:22 PM | #9 | ||
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Did you get better?
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03-18-2018, 10:07 AM | #10 | ||
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I do have facing same problem, few drops fell from my nose for 1-2 months in 2017. after 2 months I did MRI scans, doctors failed to find any leak in operation theatre. god grace that I don't want those scary days back. Are you ok? |
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