Ok so, I've been diagnosed with h form of pots for over a year now and I've discovered and beaten Multiple Myeloma in thee mean time, So now when I think things are going to get easier, viola, another RARE medical issue.
The Friday night before Christmas, my mother-in-law and I went last min shopping for the finishing touches on xmas. Needless to explain to you all, it was a lot of stress on my body. On the way home I got this massive headache!!! I mean horrid awful headache and I assumed I just way over did it and taxed my body into protest against me. Against my better judgement I took some pain meds and decided to keep going by wrapping the presents that night. So, as I'm wrapping I feel this completely odd and un-natural feeling of fluid leaking down my nasal sinuses. Then bending over to grab the wrapping paper off of the floor a clear water like like fluid starts dripping rapidly out of my nose. I found it odd but it actually relieved my headache some and the pain meds were kicking in. So, I ignored it and was hoping it would be an odd one time occurrence, like so many other odd things we deal with. But 30 min later again another couple of drips, not near as much. I thought I better just go to bed a rest and see if I can get this to stop. But, 30 min or so after I went to bed still awake I turn to my side and prop my head up to watch tv and again it starts pouring out of my nose. So, I summon the forces and have my sis take me to the ER. They totally dismiss me as it being allergic rhinitus, not ct, no testing of the fluids. So, Monday I go to my clinic and my reg doc is all full for the day so I see a PA who again totally dissmisses me. But I got a cup from him to collect the sample in because I demanded one. The next morning I bring them the nasal drippings and low and behold it is CSF leak, like I told him to begin with!!! Side note: I REALLY REALLY REALLY HATE IT WHEN A DOCTOR THINKS YOU ARE STUPID AND WON'T LISTEN TO YOUR INPUT!!!)
After that really long drawn out story, my question is is there any connection to POTS and CSF leak?? I read a post on here about another person asking something to that effect and I found an article mentioning pots and csf together (will post link below). But, can any one explain this is has anyone expierenced this?? I know there can be a connection with EDS and csf leaks but I don't have EDS. Any info would be greatly appreciated!
Well dang, I cant find the article I really wanted to post that had POTS as a possible cause of csf leak and not a misdiagnosed thing.
Also wanted to add, I am still leaking intermittently through my nose and post nasal and still have the horrid headache.
I know you finally got individuals in the medical community to vindicate you on it being a CSF leak. Has the caffeine and bedrest helped? Have you followed up w/a doctor since you tried that treatment and if so, with what result? Please keep me posted?
I am following up with a nuerologist on Feb 13th. I go in to see my GP every week for a check up and he has me on non-stop antibiotics until I see the neuro.
The caffeine does actually help a little with the headaches but not as much as I'd like it to. The doc has tried a couple of different pain meds for the headache also but nothing really seems to be very effective.
I have tried to stay horizontal as much as possible but I have to watch my 10 month old nephew while his Mom works. There is no one else who can watch him at this point. He will be going to daycare in 2 weeks then I will try to do the full bed rest thing.
The more I research the cranial csf leak, the more it looks like bed rest or surgery are going to be my only options. They can do blood patches for spinal leaks but they are not effective on cranial leaks. So I will commit to the bed rest 100% when I am free to do it.
Thanks for the concern and I will keep you posted as I can. The bright light of the computer screen makes my eyes and head hurt more so, I'm not on here as much.
Your folks aren't able to watch their grandson then? You definitely are in no shape to be watching out for your little nephew! I used to like a computer I used to use which had a dimmer on it because of the glare. I'm sorry you are in such pain with your head!
I saw lilmisspossey8088's post on a CSF leak (spontaneous cranial), as I was Googling any potential correlation between CSF leaks and multiple myeloma. I have EDS, POTS, and was diagnosed with a positive Beta 2 Transferrin in Nov. 2012, along with severe headaches/metallic taste in mouth etc. I had to research my symptoms first, and the tipoff to CSF Rhinorrhea was the fact that my grandfather had died at the age of 50 with a tumor pressing on eroded dura in the brain, which caused an aneurysm. So that's how I got the test- I asked for it, and the ENT thought I was nuts, but it came back positive. After that, I started taking Diamox, did the horizontal/caffeine thing, and hoped for another way besides cisternogram and lumbar puncture (which could cause more leaks and tears), to get a test to find out where the leak was. A year later, a surgeon offered to perform a ventriculotomy to insert dye into the top of the head, where there is less risk of tearing, without gravity pulling on the dura in the lower spine. Of course, the day they did the test, I was not leaking, but they did find a very elevated CSF protein (380), 7 times the norm. I had been failing that entire year, and I also had terrible problems in the neck with foraminal narrowing, stenosis worsening, and my bones from C5-C7 weakening. This was likely (possibly) crimping the CSF and causing it to back up into the head. Well, since last year, I've lost 40 lbs., look like I'm dying, and have severe bone pain. That's when a low IgM and M-spike on protein electophoresis turned up. So, now on to the oncologist for possible multiple myeloma, with bone signs. No neurosurgeon will touch the neck with EDS, so I have to wear a brace 24-7, am becoming paralyzed, and to be truthful, feel as if I'm dying. I hate that the doctors don't want to touch people with EDS, no matter how sick they are. I also have POTS and autonomic dysfunction, and as I grow weaker, I'm finding that the heart is going into the strange arrhythmic patterns more. The fatigue and pain are horrific. I hope you are feeling better lilmissposey; there is a CSF leakers group on Facebook, which is FANTASTIC. Lots of support there. Wishing you the best. Sincerely, Diana C.
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