Time for a Second Opinion?
 

I have been dealing with PCS for 4 months. Last week I returned to work for 3 days, but after a stressful situation with my boss, I started to have a relapse in symptoms. (Dizziness, feeling slightly disoriented, ringing in my ears, etc).

This weekend I started really struggling with temperature regulation, it's really hot where I live right now. I basically can not cool off once I get hot. This happened on Sunday, even though I stayed in the AC most of the day. All of my symptoms amped up, I ended up with a migraine, double vision (new symptom) and felt VERY confused and disoriented.

I went to the ER where they treated it like a migraine and didn't really care about my PCS. However, after some medication I felt slightly better and they sent me home. I followed up via phone with my neurologist this morning. This was the result:

He told me that the temperature regulation stuff, he's never heard of before and that it's not a PCS issue or a neurological one for that matter, so he doesn't think he can do anything about it. As for the relapse of symptoms, (I told him I feel like I'm back to where I was a week after the accident), he said that this is just normal stress. That even with a HEALTHY brain, I would STILL have these symptoms. I said understandly the stress might cause a headache, upset stomach, as I have experienced these before with "normal stress". However, I have never had ringing in my ears and double vision with "normal stress." He said that its just normal stress and with a day or two of rest I'll be fine. (I'm on day 6 of rest and still fee like garbage).

He also said it was a "normal stress" causing the new symptoms (double vision).

I basically ended the conversation feeling that this is "all in my head" and that the relapse or new symptoms aren't possible.

I really don't know what to do... but I know I certainly do not feel "normal." Do relapses this bad happen? New symptoms?

Should I want a second opinion? I have no one with experience with PCS in my life, and my family thinks that it's not really a big deal that I feel this bad again or have new stuff going on, so any and many responses from people who understand PCS would be great appreciated, so I know whether I'm going crazy or not....

I am not a doctor so my opinion can't be weighted heavily, but pre-concussion I had complex migraines and have experienced stroke-like symptoms during these migraines. I would say what you described sounds like a migraine. That doesn't mean it's not PCS related. Not sure how far a second opinion will get you but if you feel your doctor is not managing your symptoms well, then go to someone else.

Hmmmm thats true...

Would I still have ringing in my ears and double vision a few days later, without the migraine though?

I've not had double vision but i've had ringing in my ears all the way through PCS. I've been ignoring it. YEs, it's a loud ringing, but my concern is to fix the fatigue and headache. That's what personally bothered me the most.

I also had had ringing in my ears with PCS.. it was pretty much gone until this incident late last week. However the double vision is completely new.

It just seems weird that I have "new" symptoms this late in the game.

My terrible symptoms started only after 5 weeks. Ringing in the ears, constant dizziness, facial pain etc., I can't believe your neurologist said double vision is in your head.

I had been recovering quite well but had a setback at about the 12-day mark (caused by overexertion I think, in part from lifting my 45-lb nephew up a few times). I gradually bounced back from the setback, but I now have ringing in my ears. This is a new symptom - I didn't have it before the setback, which is frustrating.

However, I'm in the same boat as freezerdoor. My main concern is the other symptoms (mild but persistent headache, limited energy, waking at night, sometimes feeling a bit out of sorts), although I seem to be improving over time. The ringing in my ears is less troublesome to me, although I hope it recedes over time as well.

SmilinEyes,

What you have experienced from your neurologist is quite normal. Neurologists are often quick to discount concussion issues. If they cannot image it with a CT scan, MRI, EEG etc. They decide it does not exist.

All for your issues could be hormone related. Specifically thyroid and maybe the sex hormones.

It is unlikely that you will find a neurologist who is any better. There are very few neuros who really understand concussion.

A physiatrist may be helpful but it is a crap shoot. You will find them listed under Physical and Rehabilitation Medicine or vice versa. A physiatrist may be able to diagnose any lingering upper neck injury that has gone untreated.

Welcome to the club. Almost all of us have been where you are right now.

Yes, it is all in your head. Except it is physiologically in your head, not psychologically. Doctors just tend to get that mixed up.

My best to you.

The hormone thing is a possiblity. How would I check that out? Would I see my OBGYN or someone else?

The neck injury makes sense. Neck pain, etc was one of my prime complaints post accident. I had been given some steriods and it seemed to get better. But I get this weird crunching feeling when I turn my head certain ways, or sit certain ways. It seems that area where this sensation occurs, gets really tight when my symptoms are really bad.

Thank you so much for your suggestions. Both sound like things I should look into!

Check out the referral link I have posted many times at https://www.womensinternational.com/..._referral.html My wife uses this company. I needed supplemental Testosterone for a short period and DHEA for long term. The Thyroid hormone function is a common issue for heat regulation.

My doctors have all taken this very seriously and said they have heard it all before, it's all very normal, etc and very real. They seem to be very familiar with it all. I don't know where everyone is, but if you are in a small town (??) - maybe go to a big city for care....??? Just a thought. No idea if this is correct but something that I thought. If it's just a drive and a co-pay, it's worth it.

ugh....i live in a big city, still in the dark ages

Well then? I am at a loss. why are so many of you reporting that your doctors aren't helpful. So annoying, huh? They are supposed to know these things.

I live in Washington D.C. metro area and has access to many hospitals and specialists. Most with 30 minutes drive. No luck so far. Completed 2 years and still living with terrible symptoms.

freezerdoor,

The world wide level of concussion knowledge is grossly poor. There are some locations where one doctor has become knowledgeable about concussions and has raised the level of concussion knowledge in that area. Your 'expert' has said some things that make me think that even he is still lacking a bit of state of the art knowledge.

Childrens National in DC has a clinic that has some success although I disagree with may of the positions of Gerard Goia Ph.D., the director. He is a neuro-psych.

When I read the literature and transcripts of testimony before Congress, NIH, NFL, etc. and even some of the TBI lectures before med students lack some critical information. The Mayo Clinic web site is full of errors based on old ideas. I still find that many concussion experts are still missing critical bits of information. Robert Cantu, MD in Boston and Julian Bailes, MD in West Virginia are leading the pack of the true experts with Kevin Gruskiewicz, Ph.D. doing much of the research at UNC-Chapel Hill.

Mark - Yeah it's too bad... but specifically that the doctors don't seem to believe the patients... that's what seems unreal to me. I don't think I've ever experienced that. If I did, I think I would walk out and leave without paying my bill.

I'll take note of them if I need to visit another doctor in the future! thanks.

Curious what in particular you think my expert is lacking. Wonder if it's in my translation or truely something he said.

thanks.

pcslife - wow, in the DC area.. there are so many to pick from. I hope you find a better one. I can't remember what you said but I think you are the one that mentioned they just throw medication at you.

On a little bit of a tangent: With my very first appointment, I told my neurologist, "I DO NOT want medication, I am just here to talk to you and understand what I have and how to heal." She explained a lot to me and what to expect. She told me to expect about 3 - 6 months to heal and that I could control symtoms with drugs if I wanted to. Otherwise I was to rest both physically and cognitively but still do as much as I can daily without bringing on too many symptoms...and sent me off. I was back at her doorstep about a month later asking for drugs. : ) Hence the elavil and prednisone. What a great set of drugs they are too. : )

freezerdoor - I have hundreds to pick from literally and I dont need any referals from insurance company and can go to anyone I like. Believe it or not the first neurologist googled in front of me about PCS. She didn't explain nothing (probably don't know about it) and subsequent Neurologists as well. These Neurologists I have seen are supposed to be best and has to wait for 2 months for appointment.

I did take Elavil and other medicines they prescribed which only made my condition worse. I did the complete Prednisone dose for 3 weeks as well. If they prescribed Xanax in the beginning I am sure I didn't have to suffer so much and move out of my apartment etc., etc.,. They pretend they listened to me but they didn't. They didn't want to try anything but newer anti-depressants and Lyrica. You are very lucky you met the right Neurologist. Even I met psychiatrist and he gave me Abillify !! I don't know they wanted to help me or just want to make money from the drug companies. Disappointment after disappointments.

I will be seeing another neurologist my PCP recommended and let me see what happens. I don't much expectation but since my PCP really cares about me I just do it for my PCP.

pcslife. i'm sorry to hear of your struggles. keep us posted. I'm sure if you keep looking, you will find a doctor who will at least listen and work it out with you.

freezer, Your recent post shows her lacking <She told me to expect about 3 - 6 months to heal and that I could control symtoms with drugs if I wanted to. Otherwise I was to rest both physically and cognitively but still do as much as I can daily without bringing on too many symptoms...and sent me off.>

3 to 6 months??? There is no reason for such a comment. It is a shot in the dark to assuage the patient's concerns. No basis in fact.

without bringing on TOO many symptoms??? How many is too many?

She sounds just like the status quo.

I don't understand the concept of using Pred to over-rule the body's own inflammatory response. The inflammatory response has a purpose. It is part of the healing process. Pred for PCS is a definite off-label use.

I'd like to see the research that supports using pred for PCS. It can cause paranoia and other neuroses.

What is important is that you feel better. I hope the Pred does not prolong your recovery. The fact that she listened to you is also a big plus.

If I have a chance, I'll reread your previous posts and see what caused me to question her.

Yeah, "she," is the neurologist I've seen. I picked her out of a list in google. I think she has been good but she is no expert. She does deal with this a lot she said. She has some patients that go 2+ years to recover. She gave me that time line because she is hopeful but I pressed her for it.

She gave me prednisone when I told her I was taking 10 advil a day and my kidneys were starting to feel a bit sore. Then she gave me elavil way after the prednisone was done and I told her I'd be resuming the advil. She didn't prescribe anything unless I asked for it. I would still be on no medications if I had not asked or indicated that I was taking over the counter remedies myself.

The expert I saw is a "he". They are different doctors. I've had only one visit with him and no drugs were given. I had about an hour with him and two other doctors attending to me at the same time. I wish I'd been more prepared for that meeting but I did get what I wanted out of it so all is well. He gave me the exercise plan to work on.

"He" was hopeful as well that I would get better soon. No one will give me a time line. I just ask... "so do you think I'll be better by 3 months?" They nod and say, "Yes, I think so." No one will simply just say, "yes." I still take it as a yes because I want to believe it. He did tell me the headache could last a year or longer but I pressed him and said, "so in two years I would be better completely?" He thought so. I'm good with that. That is not a death sentence. If for some reason this goes on past the time I expect, I'll deal with it then.

On a bit of an emotional tangent --Unlike a lot of you, I didn't have a car accident or anything like that. I simply stood up into my freezer door. Didn't realize it was open by someone else in the family. It hurt but not too badly... but I blacked out for a second and sat down. I was a complete wreck for the next three days. Freezing cold, laying down, moaning, lol, the whole thing. Couldn't talk, think, felt like a complete imbicile. I got significantly better by day 4. Then by week 2 I was significantly better cognitively but not physically. Yes I have ringing in my ears, all that, big woop. The thing I want to fix is this inability to get my heart rate up. I've been working on that since before I went to this expert. I've been working on it for a few weeks now and already see improvement. I'm very hopeful. If I can get my stamina and ability to move around and exercise back, I'm golden. My only concern is the headache. It's still there. The elavil is masking it. The expert told me to not be on it for very long. Maybe 2-3 months tops. Oh well, you can't win them all. I'll deal with that later and just figure it out.

Mark - also, btw, they have all asked if I had any previous depression or ADD, or any brain chemistry imbalances. My answer is no. I have not had any brain chemisty imbalance that I know of. I have been very healthy without issue. I also do not know of any previous injury. Certainly, I do not remember any head injury of any kind. I've never even broken a bone. I'm nearly 40.

In your time researching PCS. Does this seem normal to you that I would develop PCS given how I injured myself?

The expert was concerned but we couldn't come up wiht answers on a discussion of my background. You could see his gears were turning and turning but we eventually let it go and moved the conversation on to healing.

Have you tried acetaminophen (Tylenol)? I use it for the head aches. It also has to be watched because of liver issues. I mix Tylenol and enteric aspirin. Combined, they give relief like codeine.

My concussion in 1996 was similar. I had to turn the water supply to a house off. It was outside (California) next to the wall. As I stood up, I hit the back of the top of my head on a low 4 x 10 beam extending off a low projection from the roof. Wow, did I see stars. I had to lay down on the lawn for 20 minutes.

That was the start of my journey trying to get medical help from M.D.s. Tried a few different drugs for the insomnia and head aches. Finally, after a few years, I was recommended to joint the head ache group class/consult. It was more toward learning to deal with the head aches and reducing stressful events. Sort of like Brain Injury Support group.

I think a lot of doctors give prognoses based on their own patients' experience. After coming to see the doctor and complaining for a few months, many just give up and deal with the concussion symptoms themselves. This is received as recovery since the doctor does not see them any more. Often, drugs are prescribed to assuage the patients concerns/anxieties, etc.

The 'try this and call me if it does not help' method of prescribing is the rule.

Wow, someone with a similar experience! My friends have all made up a better story of me as a navy seal or something. Anything but the freezer door story. It's just too simple.

No, Tylenol for me is like taking water. It's never worked. I take it for fevers. It works well for that. Although, I rarely mess with a fever. Better to get in a hot bath and make it really work!