Chronic tension headache diagnosis and long term management

[Lost_Girl]

Hi I suffer from chronic pain. I have a bone shard impacting a nerve root at c8 being treated with cortisone. I have pain at c5 and c6 that is manageable without anything. However I have a constant headache and pressure in my ears that I have had for pretty much every waking moment for the last 7 months. As a result I have become depressed and I have insomnia.

After a trip to a neurologist I have been advised to cease sleeping medication and strong pain killers. I am now only on antidepressants.

A visit to my psychologist today has alerted me that depression does not cause headaches.   

Has anyone been treated for chronic pain with ONLY antidepressants and did it work?

I havr a referral now to a psychiatrist to check but it not until May. While I see if I can find something earlier I sm keen to hear if this has worked for anyone.

Thanks,

Carol

[Lost_Girl]

Hi jellylegs,

Thanks so much for sharing that. I really did find it helpful. I was put on SSRI initially and the headaches went but I had very bad side effects like uncontrollable shaking. They switched me to SNRI and then the headache came back. At last visit to my neurologist I asked why the SSRI worked and the SNRI didn't and he said the SNRI will work once increased enough. I asked why we didn't try other SSRIs and he avoided the question.

I also asked about one of the side effects I had knowing they were side effects as they were listed on the information sheet that came with the tablets. His response was that the meds absolutely do not cause teeth clenching".

He told me I would be on AD for the rest of my life. I asked if there were any alternatives to AD for tension headache and he said no. I have lost all faith in him. I went straight to the GP after that and have a referral to a new neuro later this month.

Both my GP and psych agree with me. The GP even listed some alternatives to AD for tension headache. The GP felt there had been no proper diagnosis and the neuro gave her no report.

I did increase the AD as he recommended but had a severe reaction. My GP told me to reduce back down which I have and am now working with her to stop these pending new neuro advice.

On reducing the AD I have started having a swag of other symptoms including; New muscle spasms in areas of the back not previously experienced. Muscle twitching in my left quadricep and my right eyelid. Pins and needle tingling and numbness in hands forearms and right toes.

The GP tonight threw out the possibility of multiple sclerosis but also said that it could be something else and deferred to the neurologist.

So, I am trying to practice not going down the rabbit hole of worry and instead focusing on choosing to be positive. I am reminded that there is little I can do before that meeting other than writing up my timeline of events, symptoms and treatment to date.

I am going to need more practice though.

Thanks again jellylegs, it certainly lends thought to the idea of tryong other SSRIs for the pain management should the neuro and diagnosis go down that path. I appreciate your time.

Kind thoughts,

Carol

[blondguy]

Hi Carol

I must be ignorant and I have no experience in chronic pain. I have a friend in Nova Scotia that fell 30 feet and had back injuries as a result whilst renovating. She has just given the pain clinic the flick and with her spinal injuries no one has scripted her any AD's. Like here on Oz the doctors/specialists are scared to prescribe the 'severe' pain meds because of the fear of litigation through addiction.

This is an interesting topic Carol. Even spoken through lack of experience I dont know anyone that has been scripted AD's for chronic pain.

I have also been helped even by just reading the pain LW is going through Carol. I have been trying to care for him and what you have done is wonderful. You have brought out the sun for him

Paul (Hugs)

[Lost_Girl]

I just realised that I used poor English in my last post. When I said threw out, I meant as in put the cards on the table so to speak.

To clarify in plain English, in my GP's opinion based on my symptoms she suggested that it is a real possibility that I may have MS. Next step neuro as there are also other things that present with similar symptoms.

[Guest_2350]

Dear Carol,

I am thinking of you. Waiting for a diagnosis and being worried of what may come is a horrible time. I am sorry you are having difficulties with your specialists. Try to keep your hopes up.

I would like to share with you that my cousin has MS and over the years has been able to successfully keep it in check with medication. It is possible and she is leading a fulfilling life. Of course it is difficult at times, but she is doing well.

I also have a family member who suffers from chronic pain and depression. The treatment of the depression has helped her to be able to live better with the constant pain and she is much better since the depression has subsided a little. I guess all chronic pain goes hand und hand with some kind of depression. It is so difficult to accept.

Take care, Yggy

[Lost_Girl]

Thanks Yggy,

I really appreciate that. I am trying to avoid looking everything up about it though I know a little. I want to avoid obsessing over it. Some of these new symptoms make it really hard.

It is encouraging to hear about your cousin. It's good to know it can be managed. I understand from what I have read thatveach case can be different and there is a wide range of level of impact to quality of life. I am normally a very positive, can do, person so I am sure when I know for sure what's wrong I will be able to take it on and accept it and go conquer the world. It's the unknown that I find hard as you say. The being in limbo is scary. Waiting is scary. I kind of wished she hadn't said anything.

I think my biggest issue is that I keep thinking that we will find the problem and "fix" it and life will return to "normal". This forum has helped me accept that depression will always be part of me now and knowing what can trigger it helps. I just haven't got to the stage of accepting the health issues due to that big question mark hanging overhead.

I think I may need to go over to the cafe for one of Kaz's monster shakes.

And Yggy, there you go again proving just how sweet you are! Big hugs xx

[Guest_5218]

Hi Carol. Thanks for the clarification of 'threw out'. I misunderstood at first.

So the possibility of MS has now been thrown into the mix! I have forgotten when your neurologist appointment is and cant see it as I scroll back - I think towards the end of this month? So the waiting continues for you in the meantime. I expect you will need MRIs if the neuro suspects MS, as I think it is one of the tools they use for diagnosis. Meaning further delays. So you could well have a bit of a wait ahead of you still. So frustrating!

I know it will be a relief once you finally have a label to put onto whatever it is that you have. Something that can then be treated appropriately. As you say, once you have a diagnosis, you will be able to 'accept and take it on'.

I know the waiting must be really hard, and indeed scary. Not knowing what is happening, or why, is scary! But you prove time and time again what a strong and determined woman you are. Whatever the diagnosis, you will conquer it. Life will return to normal again for you. I have great faith in you, and my thoughts are with you.

Much love and a gentle hug.

Sherie xx

[Lost_Girl]

Hi Sherie,

Thankyou. I am feeling really low. I will keep working on trying not to.

Appointment is 26th April. I have already had an MRI and there were no lesions at the time (7months now), however ms lesions can present on the spine as well but I am hopeful this is not the case.

Note to self...worrying about this before it happens is not only unproductive but non-sensical because I have no control over it and what will be will be.

Feeling like a big sook though.

Thanks for caring xx

[Guest_5218]

Carol, I understand.

Its been going on for a long time and you still dont have any answers. That must be so hard.

No wonder you are feeling tired and emotional. You may be feeling like a big sook right now, and you'd be very entitled to feel that way. But in reality you arent - you've been so strong and so patient for such a long time. Under the immensely difficult circumstances of continual pain, lack of sleep, and new symptoms every day.

Worrying about something that may not be, is just as you say - unproductive, and possibly even damaging. Dare I say it - why dont you spoil yourself today in order to get your natural resolve back into gear? Now what were all those 'spoiling yourself' options you mentioned to me yesterday? Go do some of them - you definitely deserve to be spoiled. Hugs to you ....

Sherie xx

[Lost_Girl]

Hahaha touche Sherie, that made me smile. Yes I will look at spoiling myself.

xxx

[Lost_Girl]

My specialist physio appointment for TMJ went very well today.

He is looking at the issue holistically and feels that he will ba able to assist with the tension headaches too. He has had other patients who also saw the same neurologist as me. They have come to him to look for alternative assistance for tension related issues instead of only progressing with AD meds.

It was mostly going through history and going through exercises to see what mobility I currently have. He did some work around the base of my skull and neck and I have some exercises to take home.

Feeling good. Feeling hopeful that this will help ease the headaches as well as tmj.

Next appointment Friday.

Haven't had time to spoil myself. The things I want to do are restricted a bit due to the fact I am shaking a lot today. Anxiety no doubt. I am relaxing now though.