It's been 2 weeks since I've been able to get on the treadmill, and it's getting frustrating. I've been sick with nausea, vertigo/dizziness, headaches, swollen glands, etc. I have a test Friday called a VNG to find out where the vertigo is coming from and how to go about resolving it. Up until the vertigo started, I had been making some pretty great progress on the treadmill, getting my heart rate up to 160 with no symptoms.
When I saw Dr. Leddy today I brought up the fact that although my exercise tolerance was increasing, the feeling of being overwhelmed in social situations is still a problem. I get nauseous, fatigued, and headaches still when I'm in a crowd of people and sometimes just at home with Dan and the kids if it gets too loud. Even just going to church or to the store causes problems for me for the whole day.
He thinks that we should explore the possibility of it being two separate issues. He wants me to try and seek counseling for PTSD, and thinks that might be the problems I'm having in social situations. He said it could be a result of the head injury, maybe not knowing what happened in the first place. It could be any number of things. Does anyone have any experience with PTSD or counseling that has helped? I'd really like to hear about it if you have.
I'm waiting to hear the test results of the VNG to move forward on the vertigo, etc, and I'm actively looking for a PTSD counselor in the Lockport area who takes my insurance (again – any suggestions?). Please pray about these things. I've never really approached anything like this and am a little nervous and hopeful. If it really is a PTSD issue and can be resolved, this could improve my quality of life drastically!
I did some digging and found a couple articles that make me feel completely opposite. It makes me think there might be a link or a symptom overlap or something. What do you guys think?
On a positive note – I got my hearing date for Social Security Disability. It will be April 11, and we are really hoping to be approved. We applied in November of 2009, were rejected in March 2010, and just got the hearing date for our appeal. It's crazy how backlogged they are!
Thank you for all your love and support. God is great and faithful!
Love, Kate
Kate,
ReplyDeleteWe have lot of common symptoms (dizziness, nausea, fatigue, headache) and of course some you have I don't and what I have you don't.
Like you my biggest problem is in social situations where all my symptoms go on a crazy ride. Last week I went for dinner (felt like lot of noise but actually for normal people it is a quiet place) with some friends after about a year and my symptoms hit me strong. Thought I was going to faint few times.
When everyone enjoyed their food, conversation I pretended I am doing OK. That night I felt more depressed than happy knowing I still have long way to go and it took a day to recover. So biking doesn't really help in my biggest issues but I will keep doing it.
I have done those ear tests twice for my dizziness and even got some ear shots (3 times) and didn't see any improvement. I am not being negative here but be careful when they want to do any procedure. These tests also not like blood tests which you know probably. I have constant dizziness which is destroying my life. Vertigo comes and goes which I can handle. When I did the test second time I had vertigo which their system captured and Neuro-Otologist (?) said "OK. You have vertigo". Then wrote down I have anxiety problems, Meniere's syndrome etc., and gave me Klonopin. What a mess?
As you know with PCS symptoms can overlap. PTSD seems like a good suggestion and nothing wrong in trying it as long as not any serious medication involved. Keep us posted about the PTSD counseling and honestly wish you find good relief.
I have to appreciate you are trying all the venues and thanks for sharing. I sometimes feel like throwing the towel then keep pushing myself.
Good luck on all your efforts and I pray for you.
Best,
Sam.
I was actually diagnosed with PTSD before being diagnosed with post concussion syndrome. My doctor sent me to a psychiatrist and psychologist. They put me on medicine and I did Psychotherapy with the Psychologist. When I first started I could not be in a store or public place for more than 5 minutes without my anxiety going crazy. I would get so loopy, my headache would get worse, and I would become even more sick to my stomach. I would then be so exhausted for the rest of the day, sometimes days.
ReplyDeleteAfter I started therapy things did improve. It was good to talk out my problems and the therapist gave suggestions on how to improve things. I can now go grocery shopping by myself with out too much of a problem, which is a huge improvement! I still get that feeling when I am in an especially noisy environment, or unfamiliar place but it is better than what it was. I think we the problems we are going through it is good for us to have someone to talk to without judging us and someone outside of our normal life that might be able to give us suggestions that we or our family would not have thought of our self.
Sam, thanks for sharing about your symptoms. It's really hard to endure any sort of commotion. I've gotten better at it over the past 21 months, but I'm not sure why. Maybe the treadmill therapy partially helps. I am open to going to a therapist to try and be evaluated for some sort of stress disorder. Some of the articles I read suggested that hyperarousal is a symptom of PTSD, but can be present in PCS.
ReplyDeleteIf talking to someone will help, I will certainly do it. I don't want to take any meds, though – I'm so sensitive to side effects. I'm just wary, because I don't feel like I'm anxious or nervous on the surface, so whatever is keeping me from being able to last long through activity is not obvious. I also pretend I'm fine a lot, and slip away to the bathroom to vomit a lot. You are not alone, and it's better to be honest I have found.
I woke up the last 2 days without vertigo. I put a call into the doctor yesterday to see if I can cancel the VNG test. I'm thinking the vertigo was a product of a virus or something. I'm so glad it's gone, and I'm so sorry you are dealing with the dizziness all the time. It's very frustrating and keeps you from being able to lead a normal life. Does the Klonopin help?
Don't throw in the towel! Take comfort in the Lord, His yoke is easy and He will carry your burden if you let Him.
With faith, hope, and love,
Kate
Kelley,
ReplyDeleteThank you so much for sharing your experience. I'm glad to hear that talking with someone helped you. It gives me hope that I can be helped too. I can last a good 30 minutes or so before I start getting nauseous, fatigued, and headaches. It used to be a lot less, but I feel like the treadmill therapy has given me regular exercise and increased my endurance.
I have an appointment with a therapist in my area who takes my insurance, but they can't get me in until mid-March. They have me on a cancellation list, and hopefully I will get in sooner. I don't have my hopes up, but I will try it and believe in it.
I continue to wish you the best and hope that you can find a better quality of life and get better!
With faith, hope, and love,
Kate
Kate,
ReplyDeleteThanks for your kind word and hope you find a good PTSD therapist. Who knows there will be a connection there and you can get lot of benefits as long as medication is not involved.
I was taken over by extreme dizziness (near fainting) last Friday and almost collapsed. I didn't want to go hospital because I have been there and done that. They run tons of blood tests again CT scan/MRI and send me home "Do what you can tolerate" !!
About Klonopin : I started with Xanax and one doctor switched me to Klonopin and increased the dosage. Both Klonopin/Xanax works only for short time and you know why (Benzos). Yes, it did help in the beginning in social situation with nausea, dizziness, headaches and I think it calms the brain and felt I am being cured but only for short time.
But I seriously advice to stay out of it unless there is no hope. I was able to quit Xanax (not pleasant)but Klonopin I cannot. If I did I hit with dizziness, nausea, stomach pain etc., Not sure symptoms are back or withdrawal symptoms. I am planning to change to Xanax again and try quitting. What a mess?
Constant dizziness (no break for 1 year and 9 months and counting) is something I am not sure how long I can handle.
I am even looking into Stem Cell Therapy for which of course I have to travel outside the country and with my condition I won't survive any flight (if only I can handle airport).
Sorry for the rant.
Best,
Sam.
I have also been diagnosed with PCS. It's been two years since my accident and I still have problems every day. I am having neck surgery due to my accident in a couple of months. It's nice to see a blog with this topic. It gets very lonely having this disability. My friends and family dont get it. I told my neurologist he should start a support group for people who are dealing with this every day. One day I could be on disability myself. I would love to follow your blog and chat some time....Cate
ReplyDeleteSo I just thought I would write back and give a little update. I had told you how much I am struggling at work with headaches and memory/concentration issues. And I know it was suggested that I should take some time off. Well a few weeks ago I finally came to a breaking point and my doctor wrote me off work for a least a month. I have short term disability though my work, but they are refusing to pay saying that I do not have enough medical evidence to prove total disability for my time off. As I am sure you know stress does not help the symptoms. This is so frustrating. What are your main symptoms that you are filing for disability due to?
ReplyDeleteSam,
ReplyDeleteI'm sorry – I changed my email address and forgot to update my settings for comments to be emailed to my new address. Sorry about your dizziness, but I know what you mean about not wanting to go get checked out. It seems like weird and random symptoms just come with the territory. I am all for not getting extra testing done, but be careful to take care of yourself.
It's frustrating to feel so crappy all the time and know that it's just going to be that way. I'm still not on any meds. It's so difficult for me to deal with any side effects. It's hard to stop them and even more difficult to deal with the other symptoms, but it's just better for me to not have meds.
I will post this week about my situation and give an update there. Please read it and hold on to hope. You can accomplish anything in Christ Jesus. Although He may let bad things happen, He is holding your hand all the way through if you let Him.
-Kate
Cate,
ReplyDeleteI'm so sorry that you have to deal with PCS. I can't imagine recovering from surgery and dealing with PCS. May I ask what happened in your accident?
It is difficult to deal with this if you don't have a support system. People want to help, but they always seem to do the wrong thing. They want to give you different diagnosis and tell you what to do, but they don't seem to understand that PCS is a real thing and that's what you have!
Glad you feel support through this blog. I started it hoping to find others and some support myself. As I was telling Sam, I forgot to update my email when I changed it, so sorry the response is late. I'm usually much quicker.
Keep faith that you will get better and know that you are held in the great hand of the Lord until that time!
-Kate
Kelley,
ReplyDeleteGreat to hear back from you! As I mentioned before, I forgot to change my email address with my blog, and wasn't getting posts! Sorry for the late response!
I'm so sorry you are struggling with work. I tried to work the first week after my initial concussion and was constantly vomiting and feeling dizzy and weak. It didn't work and I had to leave. I got short term disability through work for 6 weeks before I applied for Social Security Disability. It was rejected at first, but approved immediately after I appealed.
My doctor is used to the PCS diagnosis and wrote me total disability until I am better. The SSD application is very long and involved and I would suggest getting a lawyer to help you with the process. I didn't get a lawyer until I was rejected, but we appealed and I have my hearing date on April 11 – just a few more weeks!
It's standard procedure for any disability stuff to be rejected immediately. It's terrible for people who need it, but I suppose I can try to understand they are trying to protect themselves from the ones who are really scamming the system.
I am very blessed by the Good Lord to have a husband that supports me and we have tweaked our budget to make things work. It's amazing that I do have the opportunity to not work while I'm sick, and it's something I took for granted until it was pointed out to me that not everyone has that luxury. Now I realize that not everyone can afford to take the time to get better.
Keep trying, keep appealing. There are forms for short term disability that your doctor can fill out to say that you are totally temporarily disabled. Good luck! I know it's a horrible process and leaves you feeling like a fraud, even though you are really sick. You just have to press on. I'm praying for you and this process. Get help filling out the forms and talking to your doctor if you need to.
Love, Kate
Kate..I'm suffering a concussion for the past 6 months as well. I have some of the same problems.. dizziness or lightheaded..headaches, fatigue, etc.
ReplyDeleteI was wondering..what is the treadmill therapy? I read a little about the Univ of Buffalo and that they do exercise as a form of therapy.
Can you tell me more or show me where to find more info?
DA,
ReplyDeleteI'm sorry you find yourself in this situation. It can be so frustrating to have these symptoms and for there to not be any answers.
The treadmill therapy is a research study I am currently participating in. It is run by Dr. John Leddy at University of Buffalo Sports Medicine. It is a regulated exercise program that gradually increases your tolerance for activity. When I started, I could not get my heart rate above 100bpm without experiencing symptoms. Now, I am able to tolerate exercising at a HR of 160 bpm without symptoms.
The website is: http://concussion.buffalo.edu/ . There are articles explaining concussion and the program. If you are living in the Buffalo, NY area, please take the time to make an appointment. If not, maybe you can call and ask them some questions.
Good luck and please let me know if there is more I can do to help.
With faith, hope, and love,
Kate
I did read a little about it...but Buffalo is prob 5 hours away for me.
ReplyDeleteIs this something that I can manage myself or with the help of a personal trainer?
How long are you on the program and what symptoms has it helped?
another quick question...do you go out to a gym for the treadmill exercise or do you have one at home?
ReplyDeleteDA,
ReplyDeleteI'm not sure what the treatment would be for you, but I can tell you my experience and you can make those decisions for yourself. I don't want to mislead you or come across as able to diagnose and treat you. I am not a doctor, just sharing my experience. I would recommend that you see Dr. Leddy and he can work with you to diagnose and treat you.
With that said, when I first started seeing Dr. Leddy, I wasn't able to do any exercise without symptoms. My resting heart rate was 100-120 and any physical movements would increase it. I got out of shape from sitting and resting from my head injury.
My parents gave me a treadmill and it's in my living room. Certainly not practical for my small living room, but I cannot drive and it was the only thing that made sense. I use a heart rate monitor (VERY IMPORTANT), to keep an eye on my heart rate. My head injury was in June of 2009, and I started trying the treadmill in June 2010. I started with 1-4 minute sessions with a low speed of 2.0 or 2.5 and either 0 or 0.5 incline. When I felt symptoms, I stopped immediately.
I wasn't able to consistently get on the treadmill daily until October 2010. At that point, I trained at the speed and/or incline that kept my heart rate below 120. I noticed that symptoms would start when my HR hit 120, so I kept it below and stopped at the first sign of symptoms.
In November, Dr. Leddy suggested that I try to get on the treadmill every day for 20 minutes a day. I was able to do this at a speed of 2.0 and 0 incline. I did that every day and stopped if I had symptoms. In December, I was able to tolerate the 20 minute walks at a HR in the 130's without symptoms.
In January, I was able to do my 20 minutes at a HR in the 140's. I monitored my speed and incline to keep my HR within the 140-150 range after a brief warm up. I now am able to work in a 150-160 range without symptoms. The progress has been slow and has sometimes been halted by illness or an increase in symptoms.
I have been able to tolerate more physical and social activity recently. I do feel like the more I progress on the treadmill, the better I feel. Sometimes I take 1 step forward and 2 steps back. Please try to see Dr. Leddy or call if you can. It would be worth it, because he doesn't only have a way to treat PCS, but diagnose it with fMRI and other testing. Good luck to you!
- Kate
This comment has been removed by a blog administrator.
ReplyDeleteKate -- you said you went on the treadmill in 1-4 min sessions in the beginning. Did you do this several times per day?
ReplyDeleteNo, I always do the treadmill once per day. Please do not subscribe to my past treatment unless you are advised by a doctor. I am not able to diagnose anyone with PCS, and Dr. Leddy is.
ReplyDeleteBe careful getting on any work out equipment and have supervision in case of seizures, blackouts, complex headaches.
I've been on and off using my spin bike. My symptoms are more of over stimulation. I can't leave the house for more than an hour without a stabbing headache 2 or 3 hrs later. I also can only go on computer for a few mins at a time and tv is limited too. Even reading gives me problems.. I understand everything, I just get exhausted later...and then the headache.
ReplyDeleteAny suggestions on how to combat the over stimulation??
I might try going for short walks if it ever gets nice enough out!!!
kate...where are you? how are you feeling..you haven't posted in a while
ReplyDeleteHi,
ReplyDeleteI'm sorry about your over-stimulation. I totally know how you feel. I have a limit on all kinds of activity whether it be social, physical, or mental. Some days the limit can be pushed and I can do more, but some days I can barely tolerate 10 minutes of anything.
Take short breaks and then try to get back into it. Sometimes I will copy and paste things I want to read and break up the paragraphs into shorter ones. It's easier to process smaller chunks.
As soon as you feel any sort of symptoms or start of symptoms, stop what you are doing if you can and lay down if you can. If you can't lay down, just find a quiet place to close your eyes.
That's what I do. Don't wait for the activity to overwhelm you.
I have had a rough couple of weeks, so that's why I hadn't posted. My neck pain and my every day headaches were elevated to the point where I could only handle very limited amounts of things. I was able to be on the computer for short periods of time. Thanks for asking!
I'm a little better today and wanted to try to respond to everyone.
Good luck!
Kate
are you still doing the treadmill??
ReplyDeleteI went to my son's baseball game the other day with the intent to get in my car if i felt it was too much...well the fire alarm at the school went off blasting right in front of my car so there was no escape! I was a mess..not from the alarm..prob from the game itself. I was a mess all day mon and tue too.
i can't deal with it anymore..no tv..no computer (well i cheat a little). barely read...going stir crazy.
I drive only in town when necessary (chiropractor) and if i have to take the kids to practice.
any other suggestions??
I am still doing the treadmill, but like I said it was very gradual for me to get to the 20 minutes I'm at now. I've had a couple of rougher days lately and have to revert back to what I was doing in the past.
ReplyDeleteWhen I started I was only getting on the treadmill for 1-2 minutes at a time at a very slow walk. You have to be patient and build up your tolerance. It took me a year to get to 20 minutes at a speed of 4.0, which is not even a jog (jog is 5.0).
Don't be discouraged by setbacks. I often feel that I'm taking 1 step forward and 2 steps back. I watch tv at a reasonable volume with closed captions on. Sometimes light reading is good for me (that hyper focus really helps you block out all other distractions to let your mind rest).
I haven't driven since I first got my concussion in June 2009. It's a horrible inconvenience, but not only does it hurt me – I can't concentrate that long, it makes my symptoms so much worse, but I feel like I would maybe hurt someone, because I'm not at 100%. I get rides, and I give up a lot because of it.
I'm sorry, I know this is really hard, but you can do it. I am in the mighty hands of the King of Kings and He gets me through each day. “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34.
Good luck. You can get through this!
Kate
From youth to the pros. Sidelines concussion testing programs and products should be mandatory for all contact sports.
ReplyDeleteI had a fall in June 2012 resulting in a mild concussion. I did have lose of consciousness for about 10 mins. I had a CT scan that day; no evidence of fracture or bleeding the first month Iwas a total wreck and I did not leave the house for a month. Eight months later I am still having symptoms and it feels as though some of my systems have been turned off and I don't know if they will ever be turned on again. I find myself not being able to drive past a certain area - like an invisible fence - but I think it is my safety zone. I to cannot tolerate much noise and I seem to be on an automatic people mover to get through my daily activities. I still feel as though I am operating on two different platforms if that makes any since. I still remember in detail of events I went through as I laid outside of my home unable to move and seeing the Light and not being able to hear anything. It was and has been a life changing event and I don't think I will ever be the same. My doctor suggested having treatment for ptsd and post concussion syndrome. That seems so overwhelming to me that I get anxiety thinking about it.
ReplyDeleteAnon,
DeleteI think what you are going through is pretty textbook PCS stuff. It sounds very much where I was at in the first year. I was very reluctant to start therapy. It took me 2 ½ years before I decided to try it. I found a woman who was physically disabled herself who specialized in trauma counseling. She was absolutely instrumental in helping me process some of my issues, but also in learning to communicate things with my loved ones, acquaintances, strangers – everyone!
I would recommend counseling to anyone going through what we are going through. I know it's overwhelming and seems like it wouldn't help, but I really think it did help me.
Good luck to you, and sorry about what you are going through!
Kate