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my freaking out monologue
9 Replies
bbass - May 12

I am seriously freaking out! In Feb. I started to get this positional headache. Horrible when standing up, but goes away when laying down. Went to a doctor and was told it was a migraine, given pills sent home. No relief...except when laying down. Went to my doctor and he said dehydrated, pumped me up with 3 liters saline solution, gave me pills and sent me home. Had a mri done of my head, it comes back unremarkable. (that's a good thing, I guess)I see my doctor again, I said I want to get off my meds to see if it helps. He says go ahead, don't think that's whats causing it, but if it makes you happy, you can try. He then said he thought my headache was anxiety related. I said, I don't think so, why would it go away when I lay down? He said I had orthostatic hypnotension and sent me to a cardiologist. The cardiologist said, are you feeling dizzy? I said no. He said see a neurologist if you have a headache.
So, I have taken myself off my cymbalta. It seemed like that helped. I had a constant neck and back pain, but headache seemed to be better. I have taken myself off of the trazodone.
Headache came back, so finally got my doctor to send me to a neurologist, a week and half before I had to go on a trip.
The neurologist did tests on me, and said that positional headaches are usually caused my csf leak in neck or spine..I was like, What? He also said that I had brisk reflexes in my knees, and was wondering what was causing it. So, decided to have an mri on my neck. Mri came back pretty normal. Have one bulging disk and military neck, but no obvious leaks or malformations.
So Tuesday afternoon, the day before I leave to go on a trip, he calls and says I have set you up to have a blood patch in one hour. Ok, to back track on that, he had put me on theophylline for 2 days but it made me very sick, then on prednisone for 3 days (I love it! Felt soooo good but didn't fix headache) after that he said, try caffeine up to 500ml before 5 a day, and we will schedule in for a blood patch to fix the csf leak in your spine. Caffeine helps so much, but causes me to be shakey and have anxiety attacks, but truly helps the headache. So, anyhow, he calls me up for this procedure the afternoon before my trip
and I get scared. Because I was leaving like very early the next day, and I am very sensitive to everything, so I was worried and reluctant, thinking how am I going to pack, or what if I have an adverse reaction to the procedure? Which requires one of those doctors that I can't spell but is the ones that put you out during surgery.
Sooo, the doctor says well, if you are not completely confident lets cancel it, I said I just don't know. He said, well, if you are not lying about your symptoms, you have a csf leak and this is all there is to fix it. But go on your trip and drink lots of caffeine.
Went on my trip, had a good time, except for the need for constant coffee and the crippling headache and fatigue.
Now, I am home and call the doctor to get the procedure, and get the run around. the receptionist is like well, he worked very hard to get you that appointment last time and you cancelled so....I have been home a week and a half!
Here is where the real freak out starts! My grandfather had a genetic ataxia disordor that starts with gait problems and involved the cerebellum. Since I have been back from my trip, I have been losing my balance, and lacking coordination. Of course I am jacked up on caffeine and my head and neck are so stiff that I can't turn them , and my ears are plugged. But I started thinking about this ataxia thing that starts in you 30s (35 here) sign can be extra brisk reflexes...and now I am freaking out...convinced that I have the beginning of ataxia. I called my cousin and she seems to remember my grandpa having to lay down alot because of headaches!!!!And I keep choking on stuff...another sign...
my husband says to stop ocd-ing about it, get the patch, see how that helps, if you have this other thing, deal with it when the time comes.
I am having body pain and brain fog (fibro stuff that seems sinister all of a sudden)
Good news is that my family doctor (who has never heard of spontaneous leaking of spinal fluid) called the one special doctor that starts with an a and they have called me and are trying to get me that procedure as quickly as possible. So now the neurologist with the god complex will be mad that we went behind his back to get this procedure done.
I have told myself today that-your mri was unremarkable, and your brisk reflexes could be because of the bulging disk in your neck, and the lack of coordination and balance is fibro related...and your ears are plugged!
OKAY. Thank you for letting me freak out. I have been freaking out to all my friends, but they don't have fibro, so they don't understand.
Man, I am already trying to decided between a cane and a walker. maybe one of those hovercrafts or rascals!, need this problem fixed...maybe then can go back on cymbalta and get off caffeine...


moodyme - May 12

hi bb, its ok, go ahead & freak. i do it all the time.I am worried 4 u bcuz, if the mri did not show any obvious leak then why do they want to give u the procedure? Orthostatic hypotension sounds right, as does a bulging disk and I do not know what a ‘military neck” is but know all to well about migraines, & lying down does not take away the pain,(just have to lay down when having one). I too went off of my cymbalta even though it helped some with the fms pain & a bit with the depression I had side affects (heart issues) cymbalta has been known to raise bld pressure, this could have been causing yr problem. I have very low bld. pressure so it did not hurt that but I have arthymimia & apnea (day & night) & it exacerbated those conditions. I think the doctors title u r looking 4 is an anesthesiologist. Any way, glad u felt a bit better on the prednisone but steroids r very dangerous. (not 2 b too bossy) but u sound a bit like me as far as going off yr meds. PLEASE!!! People, I am NOT advocating going off yr meds. This is a personal choice. I chose to go off “some” of mine because of this mentality; “these meds are killing me with all the serious side affects” & “this disease is hurting me soooooooooooo much,” ( but not killing me even though I feel like I am dieing some days or just plane feel like dieing.) so any way the anesthesiologist & yr gp may want to do this thing but yr mri was good, u do have a bulged disk which can cause headaches & the cymbalta was no doubt still in yr system as it takes a long time to get it out. I hope u get some good help soon, & oh, btw, I have a cane:) u may like to try that 1st. I don’t have to use it all the time but like it better than a walker! Ha! Good luck & hang in there, blessings.


bbass - May 12

Thanks for your compassionate response. I agree with you about the meds, but I miss the good feeling I had on the cymbalta. But it did mess with my blood pressure.
Apparently with spinal leaks, you can't always find them on MRIs, or that's why I have been told. My lower back (where they did not do a mri) is killing me and feels all burny and not right,so I think that is where the leak it. Shrug. What do I know? I just own the body, I'm not sure how it works.


Gabbie - May 13

bbs, Please try to calm down because your stress level is so high and after reading your post, I wish I could climb through this computer and give you a hug. Fibro can give you so many symptoms and it's not hard to think that you have all these terrible diseases. Years ago and before I had fibro symptoms, I was treated for military neck (my chiropractor called it soldiers neck) after taking an x-ray and seeing for some reason the natural curve in the back of the neck was gone. That part of the spine was completely straight and was causing all sorts of stuff, headaches, pain in my ears and I had a hard time even turning my neck from side to side or looking down. After a lengthy treatment, he was able to get that curve back into the neck and my symptoms caused by that problem went away. I have also been treated for TMJ which can cause headaches, neck pain, and ear aches. And, as a coffee drinker, if I don't have coffee when I get up, another BIG mug by 2:00 in the afternoon or skip the one after dinner, I end up with an excruciating headache from lack of caffeine. And it's a headache that is so painful I can barely see straight. It's unbelieveable how lack of caffeine can cause that. These are some of the things that you mentioned and I'm hoping that your symptoms are being caused by what I'm talking about. It's something to look into. I think all fibro sufferers can relate to you as far as being convinced that we have every disease there is because there seems to be an unending list of horrible symptoms that keep showing up, sometimes all at once and sometimes just a couple. And, to top it off, we don't necessarily look sick, so people think we're making it up. Stressing and worrying can sometimes magnify the fibro symptoms and even bring on more. Some medications can cause a lot of problems also. Before you agree to anymore tests and procedures, please consider some of the things that I've mentioned. Maybe you could ask your doctor for something to help you through this stressful time. I stay away from the meds prescribed for fibro (afraid of the side effects), however, I do occasionally take a xanax when I begin to stress and it's just enough to take the edge off for me to calm myself down. I hope that maybe I've helped you a little and will say a prayer for you for better days ahead.


bbass - May 13

Gabbie thank you so much for your help and support.
I have only recently became a caffeine addict because the doctor told me to start taking it. I have never had so much coffee and still felt so fatigued. Crazy. Thanks again for listening. We all need that.
Barbie Bass


STAYLOR875 - May 15

Hi BB, I had to have the blood patch procedure done several years ago because I was having surgery and a doctor that was in training was trying to give me an epidoral and kept poking me in my spine and couldn't get it in right and then finally someone else did it. We did not know that the fluid was leaking and I told them something was not right and that I was feeling pretty bad with headaches and nausea. They sent me home from the hospital with a bottle of Valuim which I knew was not the answer. The next day after I got home I had the worlds worse headache and was vomiting so my husband called the hospital and the anesthesiologist told my husband to bring me to the hospital and he would have me fixed up in 20 minutes. He took some blood from my arm and injected it into my spine and he was right, within 20 minutes I felt like a new person. It wasn't a painful procedure and it didn't take much to do. I hope everything turns out ok for you but try to relax because freaking out can't be helping the headaches. Take Care, Sandy


bbass - May 15

Thank you Sandy, I hope I have the same experience with my patch procedure that I am having done on Thursday.


axxie - May 17

hi bb, yeah quite ok to freak out, I do sometimes, and that's when I find all these corolation of problems. Anyway, what I found, is, sometimes letting things alone, will solve themselves, if not, then they can pick me up and transport to the hospital. (just kidding). As for cymbalta, I'm on them then I"m off them, it's a thing, that sometimes I feel it doesn't do much, and then when I get really bad flare and anxiety level goes up, then I take them again. I don't tell people to do that, but you are your own best advocate. As for doctors and receptionist, they are the worst of the bunch, they think that they can just order you around. I have had my run-in with them, receptionist your job is to give appointments, you are not the doctor so don't try to be. As for you telling me that I have cancelled an appointment, sometimes it's inevitable that you need to cancell. If the doctor doesn't like it, then he/she can tell me. Man they get me worked up. I have missed appointments, because of life happening, the ones you just can't do anything about, if you don't want to see me, fine, tell me. If you doctors think you can pay a receptionist 24K and let her deal with the difficult patients, that your perogative, but mine if for you to accept me as a patient.


bbass - May 18

Thanks for you response Axxie. I think a great receptionist is a hard thing to find, and am sure that when a doctor finds one, it is a treasure. It makes all the world of difference talking to a kind person on the phone.
Well, I had to stop my pity party at my house,, because my husband just one-upped me. His severe depression is coming back and he is fighting it like a trooper. What a valiant man, my heart goes out to him. So gird up your loins...we all have to fight for our lives...
barbie bass (hope no one thought I was being vulgar in my choice of name bbass!)


belle1329 - May 19

Hi wanted to share something else nothing to do with me or fibro but about side effects. My aunt 92, fell 2xs with in a year and a half. got a bit dizzy and fell and didnt want anyone to know and tried to take care of it her self thinking she would be able to get up in a bit stayed on floor but became weaker and was there for 3 days until I visited and found her. long story short, she did not break anything, went to rehab, was doing well in there , came home with all kinds of NEW meds ( she has high blood, cholosterol, agina /heart problems , one reason she got dizzy and fell, and a UTI), I was tryng for Asstd lving and the dr. report to them said she had dementia! I was never told this and SHE HAS ALWAYS been sharp as a pin. She knows more than me at times!!!. She reads does crosswords watches the news etc. Now that she is home , the rehab recommended she not be alone, which I check on her everyday, she has a PT and visiting nurse for now until she gets into the asstd. She is doing well except for taking the meds, she gets confused, i set them up but she gets confused with them being so many and different, she did overdose but was ok, and I have straightened that situation out . again long story short, I researshed the side effects of all th enew drugs, and on of them was...confusion, depression short term memory weakness dizzyness slow hertbeat. diarrhea trouble sleeping unusual tiredness or weakness! So the Dr diagnoses this instead of thinking of the meds???? He always said she was very sharp now she has dimentia. Can you believe it, poor thing has all these symptoms she was thinking it was the meds and I told her no it could not be these were only meds for her heart chol etc. Then I saw this site and thought to check the side effects. Thank God I did. Im calling the Dr I want her off them and if they cant switch, Im thinking of giving her just the meds she was on before she went into the Nursing Rehab/hosp. Thanks for listening, this also causes stress for me and then fibro pain, although knock on wood, I have been feeling great with the weather change and exercise :) Maybe its a miricle but I do feel good. :) and Its been a while since I could say that!!!



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