NEWBIE Needs Help

Hello,

Im new to this website, and very overwhelmed with all the information. Here is my situation, I will try and keep it short.

I started getting headaches late June, they became constant July 15th (all this year) I would lie down, or recline and the headache would
100% go away, ALWAYS. I went to several doc’s and then a neurosurgeon, and I was told I have a bulging disk in my neck that is causing muscle spasms,
to go up my neck and cause the headache. I had previous disk surgery on a different disk with great success and trust him. I tried alternatives to surgery,
then ended up having surgery, woke up and for 9 days NO headache. Back up a little…

End of August I woke up spinning horribly. Couldn’t turn my head any direction not even a little bit, or the room, bed everything spin out of control. I had
this for almost 2 weeks, until I got an Epley done. PT said I had Bilateral BPPV. It worked, the spinning totally stopped. But when I got into bed, I felt yucky,
like I was going to spin, but I dont.

Moving forward… after surgery… after that 9 days, I got vertigo back a little bit. Didn’t stay around. But made me feel dizzy and yucky during the day.

I went to an otologist and he said I have MAV. Put me on Topamax and a low sodium diet. I took the Topamax for 3 weeks 25 mg. During that time I got vertigo again, and went and got the epley and again, went away.But this time the dizziness during the day is much worse. I went back to the doc and he wouldn’t increase the topamax or anything. Just said its a process wait it out.
I got another opinion. The 2nd Oto said he agrees with MAV but get off the low sodium diet. He also said that 25 mg of Topamax for 3 weeks is useless. Told me to stop and take Propranolol. So I stopped on November 7th. Felt better the next day and a half, then got a pounding chest, tight throat and headache. Which was a different headache that I had for like 90+days straight. It went on for about 4-5 days. Dont have anymore of that. Im to scared about talking Propranolol or Effexor which are his 2 choices.
I decided on 1 more opinion, as I just dont believe I have this diagnosis. I feel like they are confusing my headache associated with my neck, and putting it in the mix of symptoms. So the 3rd opionion ENT said. You have Chronic Subjective Dizziness. Because You had a headache for so long, and then got BPPV that every second of the day you are scared that the vertigo and headache are going to appear. The ENT said, you are waiting for the other shoe to drop 24/7
and this is creating a lot of anxiety that is excuberating your Dizziness. Told me no meds, try and relax.
So true, I am. I walk around like Im on egg shells, everytime I feel a pain in my head I freak out.

So is it MAV or CSD?
It seems like everyones story on here is worse than mine, so Im confused. Im dizzy in a sense. Its hard to focus and read on the computer. My eyes/vision just seems off, I cannot describe it. I feel as if Im moving, even when my eyes are closed. But my balance is fine.

Dr Hains website says Effexor is good for CSD and well its good for MAV to, so all my dx would be covered. But Im soooo sensitive with meds, Im afraid to try it.
I rather try Nortriptyline, but they dont like that. The docs.

Also before this happened I had major surgery last year Oct 2010, and right before that a small car accident, and right before that my dad passed away unexpectedly and then a few months before that my uncle. I just got back to work, and 3 months later this all started, I was doing fine until after surgery when the headache came back. So I’m a little depressed and totally have anxiety.

Oh and Kloponin- OUT of the question, brings on my vertigo. I hate that stuff.

Thoughts??

Thank you all!!!
Kristina

ps… I tried to make it short :slight_smile:

Hello,

Due to the information that you have written, I think you should read about low csf pressure. If you look through my posts, and click on the one about Duke, you can get some background. I would look at that and read the links from that post as well, and see if that rings a bell for you.

Thanks for the reply.
My headache is from my a disk in my neck. I thought about the leak as well, and for me the description of it doesn’t fit, except the lying down part.
I lean more to the dx of Chronic Subjective Dizziness. But when you have 2 docs saying MAV I thought I would check into it.
Seems like people with MAV are way more dizzy than Iam. So its hard to believe I have that. So who better to talk to, then others with it.

K

I have neck issues too. I think the weakened neck caused a weakness in the dura, and my csf leaks were in my neck in the C spine area. When I am not feeling well, my neck pain is heightened…not like a stiff neck, but like sharp pain…I was told this is a sign of low pressure (pain in neck or for some lower back)

I had more chronic disequilibrium, poor sense of myself in space. Vision was weird. I could see but could not process everything I saw, therefore complicated environments were impossible and caused problems. All sorts of sensitivities to light, etc. When I close my eyes, I sense movement…kinda floating like. I have a hard time tracking conversations, listening, following along, or adding to the conversation…or following a recipe. reading, then doing, and remembering more than one step at a time. I definitely have changes in my head when I change position, more problems with standing than sitting. Standing in one place harder than walking, first laying down causes a floating rush… One of the first things I noticed when they added spinal fluid after finding my leak, was that my vision was so clear…like I didn’t notice how bad it was until I instantly saw how good it was. All the sensitivities gone. No problem finding words or keeping up with conversations. Following recipes is a breeze.

My issue now is keeping the leaks sealed.

Many people with high csf pressure have similar symptoms, but they can take drugs like Effexor and others that reduce csf pressure, with low pressure you have to plug the leak. That can take a few tries for some.

Wow, that is crazy. Glad they figured it out for you.
I thought that I may have that early on, but was told no, no you dont.
Nobody really checked though, and my headache has been gone for 13 days now, so maybe not.
I did have a brain MRI and nothing there, but that was done in the very beginning before I had dizziness and constant headache
and before surgery. Hmmm…

Thanks again.

Hi Kristina, I also have the dizziness that inafog talks about, its more in my head, my balance is fine. I always wonder about csf leak since i had my third csection with a spinal 2 months before this kicked in, but then i think to myself shouldnt it have kicked in right after my surgery? Plus I have suffered with headaches my whole life, have a family history of migraine(my grandma)my ten year old son has been getting headaches for a couple yeats now too so this leads me to believe i have migraine more than a leak? Also for years I had headaches and now my primary symptom is dizziness, it can change I hear. This whole thing also started for me during a time I was unfer high stress, and postpartum. I always go back to what inafog says though because at my worsy, I feel like im in a huge fog. Like everything is surreal and Im not really there, I feel floaty and unable to follow a conversation or directions, basically feel drugged. The medicines Im on havr decreased that feeling a lot but I keep hearing how medicines can increase/decrease csf fluod so its all very confusing.

Hi Kristina,

I was diagnosed with CSD at the Mayo Clinic, you can read the whole story if your search my posts here.

My condition arose because I had a very bad case of BPPV/Virus in the inner ear and my brain over-reacted to the damage even after it was gone. So maybe your current condition is CSD caused by your brain over-reacting to all the trauma of the surgery, the headaches, etc.

They recommended an antidepressant. I took Celexa, then switched to Lexapro (same active ingredient). I am now about 75% better after two and half months.

If you suspect CSD, they normally recommend Effexor. In my case they did not recommend Effexor as the first drug since it also works on headaches, but I don’t need anything for headaches, since I already take atenolol for headaches (it keeps the migraines away).

That’s if you have CSD. If it is spinal fluid related, there are other threads here that can help you.

You are in a good place here, there are people who have gone through similar experiences that will help you.

Also before this happened I had major surgery last year Oct 2010, and right before that a small car accident, and right before that my dad passed away unexpectedly and then a few months before that my uncle. I just got back to work, and 3 months later this all started, I was doing fine until after surgery when the headache came back.<<

I’m very sorry to hear about the loss of your father and uncle.

I wonder if the type of major surgery you had is relevant. You didn’t say what the surgery was for.

-Wexan

Thanks for all the comments.
I went away for a couple days. No phones, computers, or doc’s. I feel much better. Headache free since November 5th.
Dizziness about 50% gone. Still have trouble concentrating/focusing on the computer. My eyes feel like they want to jump around a little bit.
Does that sound familiar to anyone?
I have been prescribed Celexa, and Valium. I heard the Celexa is great. Easy going on and off. But still haven’t tried it.
I already know I do well on Valium. One of the only meds I have been able to tolerate.

Longshort, I do believe its CSD. Im so anxious all the time that my headache and / or vertigo will come back, I think about it every second of the day.
I have had 3 surgeries since July 2009. 1 Car accident and 3 deaths in the family, so Im stressed, sad, and in fear of my medical condition. So it sounds
right to me. Maybe I will give Celexa a try. I just thought I would try valium first, at bed only, since I know its okay. Klonopin causes vertigo for me.
My doc said it didn’t but the website for it says yes. and my pyschologist said its known for causing vertigo in several people. Im surprised how well people
do on it, on this website.

Wexan, I had Cervical/neck surgery a couple months ago and Periacetabular Osteotomy in Oct 2010. NOT to be confused with a hip replacement, my surgery was 1000% worse. But I did well with it. :slight_smile:

I now have back pain, since I was told to get out and start moving. I took the dog for a walk and threw his ball. 2 Weeks later, having spasms in my entire back.
Just cant win. Sigh…
But a headache that I have had for 4 months has been gone for 18 days, I will NOT complain. :slight_smile:

— Begin quote from “Kristina”

Still have trouble concentrating/focusing on the computer. My eyes feel like they want to jump around a little bit. Does that sound familiar to anyone? …

— End quote

I too get a feeling that my eyes want to jump about a bit. I’m not an expert, so for all I know there may be many causes of such a feeling, but when I get it it is very distinct.

In my case it is most easily noticed if it is present when I wake up. My eyes seem to be jumping (but a mirror shows they are not moving) about 2 or 3 times a second. At the same time I feel as if my level of consciousness/awareness is dropping and falling. I can’t function properly and feel truly ill.

I wonder if anyone else here gets this too or if someone can explain whether it is related to migraine.

-Wexan

A clue for me with regards to MAV is when you said you felt as if you are moving when you aren’t…that is classic for MAV. Also about the eyes moving, I get horrible Nystagmus with my full on migraine attack…its horrible. I don’t get the rotational dizzy with my MAV, I get a woozy head, like as if my brain were in a pool sloshing around…or as if i was a bit tipsy.
Its so hard, because when I try to explain to people some of my symptoms I feel like I am so descriptive, like it is so easy for others to understand, yet someone else may have the exact same symptom as mine, but they explain it differently…does that make sense? lol :mrgreen:

Pam

So I went away for a few days and my dizziness is pretty much gone, just having trouble focusing. I mean my eyes dont feel like they are moving at all.
I know when they are I had BPPV 2x. Mine feel like I just cant hold a stare or read alot online.
I dont think its MAV at all. Im really leaning towards Anxiety. Anxiety also does ALL this stuff to you.
It will make you feel like your moving, and headaches etc… I didn’t realize it until the dx, then I looked it up online.
And wow, Anxiety really is crazy. You never really know if its MAV or the CSD induced by anxiety, because all the meds for
MAV help the anxiety. :slight_smile: At least that works in our favor. Who cares what it is, just get rid of it right. lol.

I also see flickering light, peripheral (spelling?) vision. But my blood pressure is low and low bp can cause lights, and aura type stuff. Wierd!
I just read all these posts and bless your hearts, yours sound so much worse then mine. I mean, my headache is gone, and I can pretty much do anything at this time. Fingers crossed.

Thanks for all the help.

Well Im seeing a physchiatrist that diagnosed me with anxiety. Suprise suprise, dealing with all this, anyone would be stressed and anxious.
I never knew this. But anxiety can make you and things around you feel and look as if they are moving. So once again, Im leaning towards
subjective chronic dizziness. So I will finally try the celexa this week. I have had it for what 3 weeks now… lol just scared. But I mean
well big deal, you try it and feel worse, come off and feel back to the same “bad” its worth a shot. If it doesn;t work well Im trying effexor.
Have to, I got a son to play with. :slight_smile: